I have a C4/C5 complete injury, since June 2005. I suffer from autonomic dysreflexia symptoms A LOT. I deal with cold sweats, and chills on a daily basis. For the past two years, I've been suffering from this mystery chest pain/pressure. My doctors have done numerous tests, always ruling stuff out, but never coming up with any concrete answers besides, "it's probably neurological." No DUH?! Ya think? They've taken blood, X-rays, CAT scans, an EKG, ultrasounds and sonograms. My heart and lungs results always show as fine. I do have a history of DVTs (deep vien thrombosis-aka blood clots) in my left leg, which is common, and we (my doctors & I) decided against keeping me on blood thinners, since I have a filter, already in place to prevent clots from reaching my heart, or brain. All of my major organs, including my gallbladder have showed up as norma. With the exception of anemia, and the obvious, paralysis, every tests my doctors have given me come back "norma." So, I can't help but wonder if it's all just "normal," for someone in my condition.
The thing is, in order for these symptoms to be classified as autonomic dysreflexia, I thought there had to be an accompanying rise in blood pressure. Most of the time, my blood pressure & heart rate are fine. Yet I feel like I have the flu, almost constantly. I realize that some of my symptoms mimic having an UTI, but come on, can I really ALWAYS have a UTI? Since I have a supra pubic catheter, there's always a certain amount of bacteria in my urine. It seems almost impossible, to ever know for sure, what's wrong. I feel like UTI ends up being the scapegoat diagnosis, for all my problems, and the doctors way of getting around saying, "I have no clue." That's not to say my doctors are "bad," or don't know what they're doing. I've been to specialists, and the thing is, they can only do so much. They have to base their diagnosis, on my descriptions, which are of secondary, seemingly random symptoms. I'm sure it's as equally as frustrating for them, when they can't provide me any relief, or figure out the source of my symptoms.
I try to avoid antibiotics. They reek havoc on my bowel program, not to mention, constantly taking them, just breeds stronger bugs. My doctor & I have come up with a few possible reasons for all of my "sick" symptoms, that include: hemorrhoids, stomach ulcers, and gas. The symptoms vary, slightly, from day, to day, but I suffer from at least a couple, EVERY DAY. The chest pressure builds up randomly (I haven't been able to correlate a direct link to food, or time of day) and subsides a LITTLE when I lay down, versus sitting up. The fact that the pressure is usually worse when I'm sitting up, it makes sense that it could be hemorrhoids, since that's when there's more weight being distributed to my bottom. The other batch of symptoms I get include: cold sweats, chills, phantom sensations in my legs and feet, this odd, gross tingly sensation, all throughout my body, fevers and aches. I usually chalk them up to AD, but like I said earlier, my blood pressure is often low, or normal, while I'm experiencing these symptoms. My question is, are these symptoms really AD, or just freak neurological impulses, thanks to my screwed up spinal cord? I've experienced classic AD symptoms, like profuse sweating, goosebumps, and killer headaches, when my catheter has been blocked. In these instances, my blood pressure definitely did spike, and decrease, once the obstruction was cleared. I think the gas theory makes sense, since it's pain I can't feel, but I've tried products like Gas-Ex & Beano, and never get any relief. My diet is full of veggies, and fiber. It doesn't vary that much. I take the same dose of BP related meds, every day, and have BP every other day, so it's not like constipation is the cause. I do notice the cold sweats and goosebumps during BP, but figure that makes sense, since the stimulation is directly agitating the hemorrhoids. It's a vicious cycle, with the only solution, being a colostomy bag. If I've said it once, I've said it a thousand times, I will absolutely not consider getting a colostomy.
I take Pepcid for my stomach, so that should theoretically help with all the medication I take. If it is always gas that's the culprit, what can I do, besides what I'm already doing? I use topical treatments, and suppositories for the hemorrhoids, but considering I have to have a BP, I'm wondering if there's any other remedies, I haven't tried. I know from reading things online, that hemorrhoids, are quite common, among spinal cord injury patients. I'm wondering if anyone else, in my similar situation experiencing similar symptoms, due to hemorrhoids.
Other than the hemorrhoids, I have noticed a correlation to my period and feeling sick. When I was first injured, I didn't know I had my period, unless my caregivers told me. These past couple of years, I consistently run fevers, have cold sweats and aches, around the week of my period. I'm wondering if this is "normal" among women, with high level spinal cord injuries. I'm also curious, if perhaps I'm experiencing stomach cramping, that I can't feel, and that my brain is interpreting it as these AD like symptoms, even though my blood pressure isn't effected. I had a recent GYN exam, and everything was fine, but it HAS to be more than coincidence that my flu like symptoms increase like clock work, every month. My aunt suggested that I go on one of the birth control pills, that limits the number of periods you have, to a few times a year. The only problem with that idea, is that I'm worried about the possible weight gain, that taking birth control pills tend to cause. I watch my weight carefully. Considering I have little, to no functional movement, that also means having no means of exercising, to shed extra pounds. I already count calories, so I'm very hesitant to risk taking something, that may very well, make matters worse, or not help at all. I don't know many women with high level spinal cord injuries, but am hoping that someone might read this, and be able share their insight, about how their menstrual cycle has changed, or caused AD, since their injury. I never had much complaints, with cramping, or PMS, when I was on my feet. Now, I can't even feel my period. I just know I feel worse than usual, when I have it. I don't know if it's just a change based on aging, or something related to my injury. It's so hard finding concrete solutions, and/or answers.
The fevers and chills are the worst, of all the symptoms. The fevers I get usually start around dinner time, and last well into the early morning (2-4am). I've read that the onset of fevers, later in the day is common. I'm wondering why that is, and if it's just my body's way of expressing exhaustion. I almost always know when I have a fever, because I start to feel extreme fatigue. As soon as I start feeling tired, I usually ask someone to take my temp and I'm almost always right. The fevers are low grade, usually ranging between 99-100.5 degrees Fahrenheit. The weirdest (and most frustrating) aspect of my near daily fevers, is that they don't subside easily. I almost always take Tylenol, or ibuprofen, and lately, not only do the fevers NOT drop, they've actually INCREASED. I'm not sure how else to combat the problem, besides taking pills, and having someone place cool rags on my forehead. It's exasperating, having fevers so often, and having no obvious cause, or solution. Almost every night I start off uncomfortable, with just a sheet covering me, my fan on, and I toss and turn my head, because the discomfort prevents me from falling asleep. Some time during the night, once I've finally fallen asleep, my body cools down. By the morning, I've usually switched over to freezing, and have to have a heavy comforter on me. It's a horribly, redundant, annoying pattern. I know people with high level spinal cord injuries are extra sensitive to ambient temperature. I'm wondering if other people with high level injuries suffer from fevers, as often as I do, and if so, what theories they might have regarding causes/solutions.
Whether or not my chronic "illness" is caused by AD, or not, I'm just trying to see if anyone else out there is experiencing similar symptoms, and if so, if they've found anything for relief, that I haven't already tried. I'm constantly battling depression, and anxiety over all the loss and trauma that my paralysis has caused. Although I'm seeing a therapist, and take several medications, to help cope with the psychological impact that paralysis has had on me, it's extraordinarily hard finding joy, when I'm constantly feeling physically sick. If I could alleviate some of the physical discomfort, it would certainly have a positive effect on my mood, and make it easier to find reasons to move forward. Honestly, I feel as though (based on experience in dealing with doctors, and knowing my body) most of the discomfort is rooted in my spinal cord injury's, overall impact on my body, and the natural progression of time, given the insane amount of change and stress, my body has physically gone through.
Bowel program alone, seems to cause as much discomfort, as it causes. Unfortunately, it''s something I HAVE to have, in order to keep me alive. Obviously (besides the birth control option), there's nothing I can do about having a period. So really, I'm just trying to pin point what is causing what, and find out if there are other people out there, experiencing similar symptoms. From a medical perspective, I'm curious to know if fluctuating blood pressure, is the only qualifying characteristic to tell for sure if a symptom is AD related, or not. I often feel like my injury has condemned me to a life a chronic illness, that is just part of living with paralysis. Living this way, is certainly not normal. I have to rely on bp, medications and being dependent on others, just to stay alive. Those three things are a given, based on my condition. Having no cure in sight, makes the thought of having to live this way forever, seem hopeless. Every year, I seem to get physically worse, and therefore feel emotionally more desperate to escape. I want to know if all that I go through, is REALLY just TYPICAL, given my injury, or if it's just me. Any suggestions, shared experiences, feedback and/or ideas would be greatly appreciated!
Thursday, March 24, 2011
Friday, March 18, 2011
Gaming By Mouth
I'm quadriplegic (C4/C5 complete) due to a swimming accident in 2005. Before my injury, one of my favorite hobbies was playing video games. I'm thirty, and have been a gamer practically my entire life. The first gaming system I ever owned was a color computer, that hooked up to the TV and used huge eight track like cartridges. This was back around my kindergarten days, and I can remember using a simple joystick to play the Sesame Street educational games and a face maker game that I had for the system. My dad's a computer programmer. He had built his own hard drive at the time (1985), as well as owning an Amiga computer. I can remember being one of the only kids with a computer at home, in those days. We even had a color printer, with the old fashioned style paper, that had the holes down both sides & the perforated edges.
I remember learning "Basic" language in school, and using actual floppy (6 inch, skinny, floppy & square) disks to store our information. My second computer was a Comodore 64, which my brother handed down to me. TheComodore used floppy disks and Basic commands to "run" each game. It used simple joysticks to play the games, with one button. Some of my favorite games were: Quix, Friday the 13, Mission Impossible, B.C. Quest for Tires, Up & Down and Apple Cider Spider. At the time, my brother had the original NES. Both systems had hundreds of eight bit titles. Between the two of us we had dozens of games for each system. I can remember my best friend and I playing video games for hours! Growing up my friends and I also played outside a lot, played board games and with toys. Although we liked video games, our time glued in front of the television was more well balanced than it is for most kids today.
By the time my brother gave me his NES (around 1990), most of friends had one too. I fell in love with many of the Nintendo characters (Mario Bros., Yoshi, Toad, Princess Toadstool, Kirby & Zelda), and have been a loyal customer and fan ever since. When Super Nintento came out, my parents refused to buy it. I saved up my two dollar a week allowance and bought it for myself. I remember being so proud going to ToysRUs and handing over my huge wad of singles! SNES was a 16 bit console with a four button controller. It's funny, looking back, at how amazed I was by the graphics. I can actually remember saying how "real"' the graphics looked, which seems silly, compared to today's graphics. SNES remains to be my favorite console of all time, with some of my most loved games: Earthbound, Zelda: A Link to the Past, Super Mario World, Super Mario RPG, Tetris vs. Dr. Mario, Mario Kart, Bubsy and Donkey Kong Country. I've owned almost every Nintendo gaming system and/or handheld, with the exception of the most current system, the Wii.
At the time of my accident I had the three most current gaming systems at my apartment (I owned Gamecube & Xbox and my ex-boyfriend owned Playstation 2). I enjoyed playing games by myself and with friends in my spare time. In fact, the night of my accident I had been playing my Gameboy Advanced SP, just hours before I was injured. Gaming has been a favorite pastime practically my entire life. Despite my disability, I continue to enjoy gaming, by playing games with a mouth-stick.
Last year, I read about an amazing paralyzed professional gamer, named Randy that plays with his chin and mouth. Like me, Randy has been a gamer almost his entire life. Unlike me, Randy was born with his disability, and has only ever played by chin & mouth. Being a fellow gamer, and having had the experience of gaming with two hands, versus playing by mouth, I'm completely blown away by Randy's level of skill and the complexity of the controllers he uses. I consider myself to be a pretty good gamer, but certainly not good enough to go toe to toe, or in mine & Randy's case, mouth to hand, versus professional gamers. I'm in total awe of his amazing skill! "I'm not worthy" *bows head* LOL!
Personally, not being able to use my hands limits me to certain type of games. Given the fact that I can't hit multiple buttons at once (using a mouth-stick), I can no longer play most console games. The modern controllers have way too buttons and the games rely on complicated combinations. The way Randy plays is a bit too much work for me. I'm satisfied with the balance and selection of games I've found. The mouth-stick I use to type and use the computer is about twelve inches in length, with a plastic mouth piece and rubber tip (like a pencil eraser). Most of the PC games I play rely solely on the mouse (I use a trackball style mouse. The rubber tip of my stick makes rolling the ball easy). I use built in short cuts, like "sticky keys" and "click lock" in the control panel settings, to allow me to be able to drop, drag and highlight.
I started using a mouth-stick to play video games during my stay in a nursing home (2005-2007). A buddy of mine turned me on to a MMORPG (Massivly Multiplayer Online Role Playing Game- other examples include: World of Warcraft, EverQuest & Guild Wars) called Maple Story. For those of you not familiar with MMORPGs, they are games in which you create a character/avatar, usually a specific class within the game, in which you play with other people, in real time. They are like virtual worlds, where you can explore, form guilds, complete quests, chat, and play with friends, or people you meet within the game. They usually have loose story lines, that allow you to have freedom to play the game how you want. In fact, quite often people end up meeting up in the game just to chat & socialize with fellow players. I've met a lot of nice people, over the years playing Maple Story and even met a few of them in person (My friend Naama-aka Jane-stayed with me and went to one of my exhibits, back in 2009, traveling all the way from Israel).
As cheesy as it might sound, playing Maple Story contributed greatly to me being able to survive my stay in the nursing home, and keep my sanity. For starters, the style of the game is a classic side scroller, that uses the keyboard for controls. Allowing for customization of commands, let me arrange my keyboard so that I can hit the "jump" & arrow keys at the same time. The graphics are very animesc (I just invented that word) and reminiscent of many of my favorite Nintendo games. The whole look and feel of Maple Story fit right in with my tastes and playing gave me a much needed escape from the harsh realities of my life. Being able to socialize, and vent to real people, also helped to keep me distracted and helped keep me from becoming totally withdrawn and depressed. In the Maple Story universe, I don't look any different, from anyone else. When I meet people in the game, they have no clue that I'm playing by mouth, unless I tell them. As insignificant as that might seem, the fact that I could blend in and feel "normal" again, helped give me a confidence boost to be more social, and interact with people. Having been able bodied for the first twenty four years of my life, my disability brings with it a huge amount of body image issues, and I struggle a lot with how different I look in appearance, since my accident. To have the luxury of not standing out, actually made it easier to break the ice and talk about my injury, and my disability (in the article about Randy, it mentions him having similar feelings and about the sense of freedom that he feels, while gaming). It makes me feel good to be able to keep up and compete with my able bodied peers, within the game. Everyone I meet is always stunned and surprised when I tell them I'm paralyzed. It's hard for the average person to imagine how it is that I can type so fast, and how well I play the game. I usually jokingly say, "you should've seen me when I could use my hands!" I can only imagine how amazing a gifted player like Randy would be, if it were not for his disability.
Like I said earlier, for the most part, on the PC I stick to games that only require a mouse to play. There are tons of games that fall into this category, including many of the popular social networking connected games, likeFarmville, Bejeweled and SPP Super Poke Pets. My favorite genres include, hidden object (like Huntsville Mysteries), match three (like Jewel Quest), and simulation (like The Sims). Many of the games I play are for free, with optional features for purchase. Another great invention (besides the trackball mouse- which stays stationary, and requires you to move just the ball, instead of the entire mouse) that has widened the selection of games I can play, has been the touch screen. There are two types of touch screens, pressure and capacitive. I have games for both. The Nintendo DS uses a pressure based touchscreen, on which I use a knitting needle, attached to the end of a traditional mouth-stick. The hand held system comes with a small plastic stylus, however it's way too short & thin for me to use. The knitting needle tip, mimics the stylus tip and gives me the same amount of accuracy. I have over thirty games for my DS, that for the most part, rely totally on the stylus and don't require pushing any buttons (some have annoying microphone or button requirements, that I basically ignore, or get help with, if I can't, but that don't hinder overall game play).
The iPad uses a capacitive touchscreen, which uses the electricity in our bodies (literal touch) to work. Given the fact that my hands no longer work, I use a special stylus (called a Pogo) attached to the end of a mouth stick, which mimics touch. The capacitive fibers wear down over time, and need to be replaced, depending on how much you use them. There are tons of games available for purchase (many have "lite" version for free, to test games out) in the Apple apps store. As an artist, I also use my iPad to create digital art, in addition to using it for writing, reading and gaming. My iPad is almost as versatile as my PC, and I love the fact that I can sketch and create art on it. As far as the games go, the graphics and sound on the iPad are superior to that of the DS, and uses a much larger touch screen surface.
Below I've listed some of my favorite game titles/gaming websites, for each platform:
PC-
1. Maple Story MMORPG- http://maplestory.nexon.net/
2. Farmville- http://www.farmville.com/
3. SPP SuperPoke Pets! https://secure.superpokepets.com/spp/login
4. Big Fish Games- You can download & pay per game, or pay a subscription for full games. I enjoy playing "match 3" games & "hidden object" games. I enjoy: Huntsville Mysteries, Bookworm, Asami's Sushi Shop, Fishdom, Puzzle Quest 2 & 7 Wonders. All the titles I listed are mouse driven. http://www.bigfishgames.com
5. The Sims Series- http://thesims.ea.com/
6. Spore- http://www.spore.com
Nintendo DS-
1. Animal Crossing: Wild World- http://ds.ign.com/articles/673/673671p1.html
2. Mario vs. Donkey Kong series- http://ds.ign.com/articles/113/1134070p1.html, http://ds.ign.com/articles/735/735297p1.html
3. Final Fantasy IV- http://ds.ign.com/articles/887/887583p1.html
4. Final Fantasy: The 4 Heroes of Light- http://ds.ign.com/articles/112/1125729p1.html
5. The Cooking with Mama series- http://ds.ign.com/articles/733/733555p1.html, http://ds.ign.com/articles/837/837283p1.html, http://ds.ign.com/articles/103/1038659p1.html
6. Disney Princess: Magical Jewels- http://ds.ign.com/articles/831/831424p1.html
7. The Professor Layton Mystery series- http://ds.ign.com/articles/851/851856p1.html, http://ds.ign.com/articles/101/1017161p1.html, http://ds.ign.com/articles/111/1119632p1.html
8. Chrono Trigger- http://ds.ign.com/articles/932/932438p1.html
9. Fire Emblem: Shadow Dragon- http://ds.ign.com/articles/954/954421p1.html
10. Wario's Warehouse series- http://ds.ign.com/articles/587/587217p1.html, http://ds.ign.com/articles/107/1079712p1.html
11. Brain Age series- http://ds.ign.com/articles/702/702057p1.html, http://ds.ign.com/articles/813/813780p1.html
12. Dragon Quest IX: Sentinels of the Starry Sky- http://ds.ign.com/articles/110/1104879p1.html
13. The Legend of Zelda: Phantom Hour Glass (was very disappointed that Zelda: Spirit Tracks uses a button/stylus combo)- http://ds.ign.com/articles/822/822825p1.html
14. Pokemon Diamond (have to use buttons, but it is a turned based RPG, which makes that doable)- http://ds.ign.com/articles/782/782443p1.html
15. Yoshi Touch & Go- http://ds.ign.com/articles/595/595523p1.html
16. Age of Empires Mythologies- http://ds.ign.com/articles/933/933525p1.html
17. Harvest Moon DS Cute- http://ds.ign.com/articles/864/864320p1.html
18. Ninjatown- http://ds.ign.com/articles/924/924068p1.html
19. Gardening Mama- http://ds.ign.com/articles/969/969213p1.html
iPad-
1. Final Fantasy- http://itunes.apple.com/us/app/final-fantasy/id354972939?mt=8
2. Crystal Defenders- http://itunes.apple.com/us/app/crystal-defenders-for-ipad/id379052382?mt=8
3. Chaos Rings- http://itunes.apple.com/us/app/chaos-rings-for-ipad/id384090103?mt=8
4. Puzzle Quest- http://itunes.apple.com/us/app/puzzle-quest-hd/id398190768?mt=8
5. Color Cross HD- http://itunes.apple.com/us/app/color-cross-hd/id383300986?mt=8
6. Jewel Quest Mysteries: Curse of the Emerald Tear- http://itunes.apple.com/us/app/jewel-quest-mysteries-curse/id337188077?mt=8
7. Chop Chop Ninja- http://itunes.apple.com/us/app/chop-chop-ninja/id346877580?mt=8
8. Angry Birds series- http://itunes.apple.com/us/app/angry-birds/id343200656?mt=8
9. Smiles HD- http://itunes.apple.com/us/app/smiles-hd/id364871736?mt=8
Related Info:
1. Article about Randy- http://www.asylum.com/2010/04/13/amazing-pro-gamer-nom4d-plays-with-just-his-lips-and-chin/
2. Randy's YouTube channel- http://www.youtube.com/user/TheRealN0M4D
3. Video demo of me using my iPad (with Pogo stylus)- http://www.youtube.com/watch?v=H85Lb8Pyu9U&feature=youtube_gdata_player
I remember learning "Basic" language in school, and using actual floppy (6 inch, skinny, floppy & square) disks to store our information. My second computer was a Comodore 64, which my brother handed down to me. TheComodore used floppy disks and Basic commands to "run" each game. It used simple joysticks to play the games, with one button. Some of my favorite games were: Quix, Friday the 13, Mission Impossible, B.C. Quest for Tires, Up & Down and Apple Cider Spider. At the time, my brother had the original NES. Both systems had hundreds of eight bit titles. Between the two of us we had dozens of games for each system. I can remember my best friend and I playing video games for hours! Growing up my friends and I also played outside a lot, played board games and with toys. Although we liked video games, our time glued in front of the television was more well balanced than it is for most kids today.
By the time my brother gave me his NES (around 1990), most of friends had one too. I fell in love with many of the Nintendo characters (Mario Bros., Yoshi, Toad, Princess Toadstool, Kirby & Zelda), and have been a loyal customer and fan ever since. When Super Nintento came out, my parents refused to buy it. I saved up my two dollar a week allowance and bought it for myself. I remember being so proud going to ToysRUs and handing over my huge wad of singles! SNES was a 16 bit console with a four button controller. It's funny, looking back, at how amazed I was by the graphics. I can actually remember saying how "real"' the graphics looked, which seems silly, compared to today's graphics. SNES remains to be my favorite console of all time, with some of my most loved games: Earthbound, Zelda: A Link to the Past, Super Mario World, Super Mario RPG, Tetris vs. Dr. Mario, Mario Kart, Bubsy and Donkey Kong Country. I've owned almost every Nintendo gaming system and/or handheld, with the exception of the most current system, the Wii.
At the time of my accident I had the three most current gaming systems at my apartment (I owned Gamecube & Xbox and my ex-boyfriend owned Playstation 2). I enjoyed playing games by myself and with friends in my spare time. In fact, the night of my accident I had been playing my Gameboy Advanced SP, just hours before I was injured. Gaming has been a favorite pastime practically my entire life. Despite my disability, I continue to enjoy gaming, by playing games with a mouth-stick.
Last year, I read about an amazing paralyzed professional gamer, named Randy that plays with his chin and mouth. Like me, Randy has been a gamer almost his entire life. Unlike me, Randy was born with his disability, and has only ever played by chin & mouth. Being a fellow gamer, and having had the experience of gaming with two hands, versus playing by mouth, I'm completely blown away by Randy's level of skill and the complexity of the controllers he uses. I consider myself to be a pretty good gamer, but certainly not good enough to go toe to toe, or in mine & Randy's case, mouth to hand, versus professional gamers. I'm in total awe of his amazing skill! "I'm not worthy" *bows head* LOL!
Personally, not being able to use my hands limits me to certain type of games. Given the fact that I can't hit multiple buttons at once (using a mouth-stick), I can no longer play most console games. The modern controllers have way too buttons and the games rely on complicated combinations. The way Randy plays is a bit too much work for me. I'm satisfied with the balance and selection of games I've found. The mouth-stick I use to type and use the computer is about twelve inches in length, with a plastic mouth piece and rubber tip (like a pencil eraser). Most of the PC games I play rely solely on the mouse (I use a trackball style mouse. The rubber tip of my stick makes rolling the ball easy). I use built in short cuts, like "sticky keys" and "click lock" in the control panel settings, to allow me to be able to drop, drag and highlight.
I started using a mouth-stick to play video games during my stay in a nursing home (2005-2007). A buddy of mine turned me on to a MMORPG (Massivly Multiplayer Online Role Playing Game- other examples include: World of Warcraft, EverQuest & Guild Wars) called Maple Story. For those of you not familiar with MMORPGs, they are games in which you create a character/avatar, usually a specific class within the game, in which you play with other people, in real time. They are like virtual worlds, where you can explore, form guilds, complete quests, chat, and play with friends, or people you meet within the game. They usually have loose story lines, that allow you to have freedom to play the game how you want. In fact, quite often people end up meeting up in the game just to chat & socialize with fellow players. I've met a lot of nice people, over the years playing Maple Story and even met a few of them in person (My friend Naama-aka Jane-stayed with me and went to one of my exhibits, back in 2009, traveling all the way from Israel).
As cheesy as it might sound, playing Maple Story contributed greatly to me being able to survive my stay in the nursing home, and keep my sanity. For starters, the style of the game is a classic side scroller, that uses the keyboard for controls. Allowing for customization of commands, let me arrange my keyboard so that I can hit the "jump" & arrow keys at the same time. The graphics are very animesc (I just invented that word) and reminiscent of many of my favorite Nintendo games. The whole look and feel of Maple Story fit right in with my tastes and playing gave me a much needed escape from the harsh realities of my life. Being able to socialize, and vent to real people, also helped to keep me distracted and helped keep me from becoming totally withdrawn and depressed. In the Maple Story universe, I don't look any different, from anyone else. When I meet people in the game, they have no clue that I'm playing by mouth, unless I tell them. As insignificant as that might seem, the fact that I could blend in and feel "normal" again, helped give me a confidence boost to be more social, and interact with people. Having been able bodied for the first twenty four years of my life, my disability brings with it a huge amount of body image issues, and I struggle a lot with how different I look in appearance, since my accident. To have the luxury of not standing out, actually made it easier to break the ice and talk about my injury, and my disability (in the article about Randy, it mentions him having similar feelings and about the sense of freedom that he feels, while gaming). It makes me feel good to be able to keep up and compete with my able bodied peers, within the game. Everyone I meet is always stunned and surprised when I tell them I'm paralyzed. It's hard for the average person to imagine how it is that I can type so fast, and how well I play the game. I usually jokingly say, "you should've seen me when I could use my hands!" I can only imagine how amazing a gifted player like Randy would be, if it were not for his disability.
Like I said earlier, for the most part, on the PC I stick to games that only require a mouse to play. There are tons of games that fall into this category, including many of the popular social networking connected games, likeFarmville, Bejeweled and SPP Super Poke Pets. My favorite genres include, hidden object (like Huntsville Mysteries), match three (like Jewel Quest), and simulation (like The Sims). Many of the games I play are for free, with optional features for purchase. Another great invention (besides the trackball mouse- which stays stationary, and requires you to move just the ball, instead of the entire mouse) that has widened the selection of games I can play, has been the touch screen. There are two types of touch screens, pressure and capacitive. I have games for both. The Nintendo DS uses a pressure based touchscreen, on which I use a knitting needle, attached to the end of a traditional mouth-stick. The hand held system comes with a small plastic stylus, however it's way too short & thin for me to use. The knitting needle tip, mimics the stylus tip and gives me the same amount of accuracy. I have over thirty games for my DS, that for the most part, rely totally on the stylus and don't require pushing any buttons (some have annoying microphone or button requirements, that I basically ignore, or get help with, if I can't, but that don't hinder overall game play).
The iPad uses a capacitive touchscreen, which uses the electricity in our bodies (literal touch) to work. Given the fact that my hands no longer work, I use a special stylus (called a Pogo) attached to the end of a mouth stick, which mimics touch. The capacitive fibers wear down over time, and need to be replaced, depending on how much you use them. There are tons of games available for purchase (many have "lite" version for free, to test games out) in the Apple apps store. As an artist, I also use my iPad to create digital art, in addition to using it for writing, reading and gaming. My iPad is almost as versatile as my PC, and I love the fact that I can sketch and create art on it. As far as the games go, the graphics and sound on the iPad are superior to that of the DS, and uses a much larger touch screen surface.
Below I've listed some of my favorite game titles/gaming websites, for each platform:
PC-
1. Maple Story MMORPG- http://maplestory.nexon.net/
2. Farmville- http://www.farmville.com/
3. SPP SuperPoke Pets! https://secure.superpokepets.com/spp/login
4. Big Fish Games- You can download & pay per game, or pay a subscription for full games. I enjoy playing "match 3" games & "hidden object" games. I enjoy: Huntsville Mysteries, Bookworm, Asami's Sushi Shop, Fishdom, Puzzle Quest 2 & 7 Wonders. All the titles I listed are mouse driven. http://www.bigfishgames.com
5. The Sims Series- http://thesims.ea.com/
6. Spore- http://www.spore.com
Nintendo DS-
1. Animal Crossing: Wild World- http://ds.ign.com/articles/673/673671p1.html
2. Mario vs. Donkey Kong series- http://ds.ign.com/articles/113/1134070p1.html, http://ds.ign.com/articles/735/735297p1.html
3. Final Fantasy IV- http://ds.ign.com/articles/887/887583p1.html
4. Final Fantasy: The 4 Heroes of Light- http://ds.ign.com/articles/112/1125729p1.html
5. The Cooking with Mama series- http://ds.ign.com/articles/733/733555p1.html, http://ds.ign.com/articles/837/837283p1.html, http://ds.ign.com/articles/103/1038659p1.html
6. Disney Princess: Magical Jewels- http://ds.ign.com/articles/831/831424p1.html
7. The Professor Layton Mystery series- http://ds.ign.com/articles/851/851856p1.html, http://ds.ign.com/articles/101/1017161p1.html, http://ds.ign.com/articles/111/1119632p1.html
8. Chrono Trigger- http://ds.ign.com/articles/932/932438p1.html
9. Fire Emblem: Shadow Dragon- http://ds.ign.com/articles/954/954421p1.html
10. Wario's Warehouse series- http://ds.ign.com/articles/587/587217p1.html, http://ds.ign.com/articles/107/1079712p1.html
11. Brain Age series- http://ds.ign.com/articles/702/702057p1.html, http://ds.ign.com/articles/813/813780p1.html
12. Dragon Quest IX: Sentinels of the Starry Sky- http://ds.ign.com/articles/110/1104879p1.html
13. The Legend of Zelda: Phantom Hour Glass (was very disappointed that Zelda: Spirit Tracks uses a button/stylus combo)- http://ds.ign.com/articles/822/822825p1.html
14. Pokemon Diamond (have to use buttons, but it is a turned based RPG, which makes that doable)- http://ds.ign.com/articles/782/782443p1.html
15. Yoshi Touch & Go- http://ds.ign.com/articles/595/595523p1.html
16. Age of Empires Mythologies- http://ds.ign.com/articles/933/933525p1.html
17. Harvest Moon DS Cute- http://ds.ign.com/articles/864/864320p1.html
18. Ninjatown- http://ds.ign.com/articles/924/924068p1.html
19. Gardening Mama- http://ds.ign.com/articles/969/969213p1.html
iPad-
1. Final Fantasy- http://itunes.apple.com/us/app/final-fantasy/id354972939?mt=8
2. Crystal Defenders- http://itunes.apple.com/us/app/crystal-defenders-for-ipad/id379052382?mt=8
3. Chaos Rings- http://itunes.apple.com/us/app/chaos-rings-for-ipad/id384090103?mt=8
4. Puzzle Quest- http://itunes.apple.com/us/app/puzzle-quest-hd/id398190768?mt=8
5. Color Cross HD- http://itunes.apple.com/us/app/color-cross-hd/id383300986?mt=8
6. Jewel Quest Mysteries: Curse of the Emerald Tear- http://itunes.apple.com/us/app/jewel-quest-mysteries-curse/id337188077?mt=8
7. Chop Chop Ninja- http://itunes.apple.com/us/app/chop-chop-ninja/id346877580?mt=8
8. Angry Birds series- http://itunes.apple.com/us/app/angry-birds/id343200656?mt=8
9. Smiles HD- http://itunes.apple.com/us/app/smiles-hd/id364871736?mt=8
Related Info:
1. Article about Randy- http://www.asylum.com/2010/04/13/amazing-pro-gamer-nom4d-plays-with-just-his-lips-and-chin/
2. Randy's YouTube channel- http://www.youtube.com/user/TheRealN0M4D
3. Video demo of me using my iPad (with Pogo stylus)- http://www.youtube.com/watch?v=H85Lb8Pyu9U&feature=youtube_gdata_player
Tuesday, March 8, 2011
Shitty Day
Today has been a very shitty day, in every sense of the word. I hate to resort to vulgarities, but I feel as though it is the only word that can appropriately express the level of exhaustion and anger that I currently feel. I've been struggling more than ever to keep my sanity, and keep pushing forward, and today is a classic example, of the overwhelming tragedy and frustration that paralysis has thrust into my life. Despite my best efforts, I'm forever left feeling like a prisoner within my own flesh, and wanting anything to escape. I feel the need to share today's events, so far, to highlight the ugliness of paralysis, and shine a light on many reasons why living with paralysis has been, and continues to be so challenging for me. I'd challenge anyone to live through a few days like today, and still be able to be joyful and find motivation for wanting to keep living, paralyzed.
Today started like many mornings have, since my accident; sleepless and in pain. I spent the better part of last night uncomfortable, with cold sweats, chills, and mystery chest pressure, keeping me awake. I lie in bed trying to find comfort in the only position that doesn't hurt my shoulders (on my back- which is never how I used to sleep), and toss and turn my head, from left, to right, and back again. All the while, my mind is racing at top speed- apparently, the only speed I have- and I'm trying my best to ignore my discomfort. It's amazing how uncomfortable I can be, despite that fact that I can't actually feel most of my body. The little I can feel is full of annoyances, and the littlest of movements can trigger a leg spasm, move my hair out of place, create an itch I can't scratch, tense up my arm, or any number of stupid little things, that I can try to ignore, or call someone for help. I end up ignoring about half of my impulses, out of decency and consideration for my family/aides. Either way, most every night is a restless night, full of inner turmoil and despair. I can't help but beat myself up, over my accident and cling to the life I had. All of my memories bring with them a certain amount of grief, and I have yet to find a way to let go of what I lost (in both potential for the future and in reality). I spend most my nights trying to distract myself from negative thoughts, and find enough peace to fall asleep. Unfortunately, even sleep is not an escape, as many nights are filled with bad dreams, that make waking up seem somewhat better. I pray and pray, and ask God for a cure, to take me, and spare me the suffering, or at the very least, give me some measure of understanding, as to why my life has to be so difficult. In that respect, last night was the same as every other night since my accident; no answers and little sleep. Once I finally did manage to fall asleep, it was nearly 9am and my nurse was already on her way.
My nurse arrived around nine thirty, and so began my bowel program, most certainly my most hated aspect of life with paralysis. Bleary eyed, sick to my stomach, and depressed to be starting off my day in such a horribly violating way, I say nothing as my mom and nurse begin to strip off my adult diaper (wonderfully sexy garment) and roll me on to the sling. Next, it's time to get pumped up into the hoyer lift, and take the adrenaline filled ride, across the room to my most hated piece of furniture, my commode. It's impossible to explain to fear and mix of sensations that go through my mind, as my body is suspended in mid air, with no means of stopping myself from falling, or way to brace myself for impact. The hoyer lift makes me feel like I'm floating through the air (not in a good way), and unless you are paralyzed, it's hard to imagine how terrifying a small "ride" can seem. It is one small aspect of life that I've learned to tolerate, and although it makes me on edge, once I'm safely strapped into my commode, or landed in my wheelchair, it's not a big deal, and something that makes caring for me easier on my family/aides. As scary as it can be sometimes, it beats getting picked up and carried, which is usually more painful, and more dangerous, for everyone involved. Once I got strapped into the commode, the nurse wheeled me into the bathroom to begin the bowel regime. It's an awful necessity, that has never gotten any easier to deal with.
The only comparison I can think of, to accurately describe my feelings toward bowel program is rape. Although I realize that is a very strong word, with very negative connotations, hear me out. Before my accident, I was a very self conscious person (still am) and had many issues regarding the bathroom (still do). I was very private and couldn't stand the thought of using public restrooms, outside of my home, and a very few select friends' home to EVER "go number two." I can count on one hand the number of times that in almost TWENTY FIVE YEARS of my life on my feet that my IBS forced me into the shame and embarrassment of violating my own code of bathroom conduct. I find everything about poop, and feces related actions (aka-passing gas) humiliating, unladylike, and disgusting. If I had a choice, I'd negate the whole process all together, and have said many times, to many doctors, that I'd gladly trade in food, for a liquid diet, if it meant I could not have to "go" again. Obviously, that is not and option; I must eat and therefore poo. Having a spinal cord injury has made my worst fears a reality. It is truly Hell on Earth. Not only am I forced into revealing ever flaw, and every inch of my naked body, I'm forced into being violated on a near daily basis. Incontinence, and the anxiety over accidents, practically rule my life. I feel shame and embarrassment having to have other adult human beings not only acutely aware of my bodily functions, but up close and personal, in my face, and in my space, whether I want them there or not. I'm forced into accepting another human being, put their finger up my rear end, multiple times, every other morning, to stimulate my body into doing a process, it should be able to do naturally, and on my own. Personal space and privacy are luxuries that do not exist in my life. This morning, like so many other mornings, I had to make a "choice" to accept help, and accept having a bowel regime, despite my embarrassment, loathing, and revulsion to the process, because my only other alternatives are to become impacted, septic, and die, or have a colostomy bag strapped to my side (a bag full of the single most hated and embarrassing thing possible, in my mind). Do you really consider that a choice? I'm forced into accepting the bizarre, unnatural and repulsive, because the only choice, is to become sicker and/or possibly die. My paralysis shoves bowel program down my throat, and silences my voice, because there is no viable alternative. My body no longer answers to me, therefore I'm forced into answering to other people. Right now there is no cure. There's life; paralyzed. Take it, or leave it. That is my only real choice.
My list for reasons to want to die vastly outweighs my reasons for staying. The thing that keeps me here is fear. I don't have a strong faith in God (like many people have). Instead, I have a mountain of fear and doubt. I was raised Catholic, and although I don't believe in much of the religion, I do hope that there is a God. Catholicism is not a very flexible, open-minded religion, in my experience. I attended Catholic school for the first ten years of my schooling, and although I don't buy into most of the rituals and the emphasis the Catholic church puts on going to church and the Pope, the lessons I learned as a child, still have a hold on me. I wish that I had a strong faith in God, any God, because I have seen what peace of mind and strength that faith has given to other people. One of the reasons that turned me off to my childhood belief in God, was the rigidness of the religion I grew up. I consider myself to be a very open minded, liberal person, and those aspects of my personality make it extremely hard for me to believe in the triumphalist type belief system of most organized religions. I've read a lot about (and watched documentaries) about various religions. I enjoy history. I enjoy philosophy and the history of how religions were formed, and came to be. I've read a lot of the Old & New Testament of the Bible throughout my life. It seems absurd to me that God, an omniscient, omnipotent being, that has the capacity to create our entire universe, would be hung over petty rituals and/or the name by which we call him/her/it/them. I can't believe that if there is a God, that he/she/it/them would punish damn someone to an eternity of suffering, despite that person being kind, and good, because that person wasn't born into the right culture, time, or place, or didn't worship him/her/it/them by the right name. I can't stand that people are willing to hurt other people in God's name. It's horribly asinine to think that such a powerful, all knowing being, would want their/his/hers/its creation to waste its energy and time on hurting one another. If most people would be open minded enough to learn about other religions and consider each other, as equal, human beings, it would be obvious, that there are basic messages that transcend all faiths; to love one another.
Before my accident I probably would've classified myself as an Atheist. Now I guess I'm Agnostic. I'm not really sold on any particular God(s) or religion, but I do want to believe in something. Catholicism is very clearly opposed to suicide. Catholicism very clearly states that the only path to heaven is Jesus. I have a VERY hard time accepting both of those "truths." I have a lot of friends of varying faiths, that are good people, that contribute to society in positive ways and are kind to their fellow man. I can't bring myself to worship a God that would condemn my loved ones and friends to a firey abyss, just because they don't call him Jesus. If there is an afterlife I have to believe it's open to all good human beings and that if there is any judgment, that it's fair and just. I'll never be sold on the thought that God would care about insignificant things like clothes or what type of food we eat. My Catholic upbringing causes me to have a lot of fear and anxiety over what will happen to my soul, if I have one. I want to believe that God is not as rigid, jealous and inflexible, as Christianity, Judaism or Islam would have us believe. People say God only gives us what we can handle, but I feel like my life is proof that that isn't true. I can't handle the curve ball that life (or God) has given me. There are so many paradoxes, that keep me always doubting and questioning. I mean, if God loves me, how can he/she/it/them let me suffer? If God has a plan for us, then how can we also have freewill? I'm a logical, realistic person, that makes it very hard for me to believe. I know having faith means blindly believing, but it's not something I can force. On the other hand, the teachings that I was brought up with, very clearly state that I will go to Hell if I give up on life. The thing is, I feel like my situation is not average and I don't know whether God would consider not accepting help, as suicide. I'm not an able bodied person, putting a gun to my head, because my marriage failed, or I lost money in the stock market. My life is sustained by very unconventional means. I'm not healthy. I'm suffering.
It is my doubt and confusion over my faith in God and refusing help that keeps me here. Although I do feel sorry for family, in that I know they would be sad if I died, I feel as though I have already given them 5 1/2 years extra time with me, and I feel that my suffering has been sufficient enough to feel satisfied that I've tried my best, and given them my best effort. I think it would be selfish of them, and cruel to expect any more from me, and hope that despite their grief, that they would understand my death would alleviate my suffering. Besides, if there truly is an afterlife they can draw strength from knowing we'll be reunited. What stops me from giving into my wish to die, is my uncertainty over what will happen to my soul. It's horrible having anxiety over a soul I'm not even convinced I have. All I have is doubt. I'd like to believe that if God does exist, he/she/it/they knows my heart better than anyone, and knows how much I've suffered and how sorry I feel for wanting to give up. I'm don't think refusing help is the same as a healthy person committing suicide. Like I've said in a previous response, if I technically "left my life in God's hands" I'd be dead. I can't care for myself. I'm only here because the resources exist to keep me here. The problem is, I'm not happy. I don't consider this a quality life. I know I have talents. I'm aware I'm gifted in writing and art. The problem is, it's not enough. While I might have the ability to still do certain things, they're not enough to fulfill me. It makes me frustrated, confused and angry that everyone (including God-evidently) would be fine and respect the fact that I don't want to live dependent on machines. I can refuse a vent and get into heaven, but I if I refuse my bowel program, I'm committing suicide and will be damned to hell. Quality of life means more to me than quantity. Most people don't want to admit, or can't understand how awful my life is. No one would want my life for themselves. It seems very harsh to me that I'm forced to endure so much pain and that God would punish me, for not wanting to suffer. It takes A LOT to keep me alive; living a life I hate. The rules of suicide and what God would or wouldn't consider suicide, seem very unfair, confusing and ambiguous. It's fear and doubt that keep me here.
It's fear that keeps me pushing forward, on days like today, when I'm worn down and feeling like I'm forced into accepting horrible conditions. This morning during bowel program, I felt horrible. I was clammy, with cold sweat, and shivering with cold (phantom feelings of cold, in limbs I can no longer feel, on the outside). I wanted to disappear and run away, but I couldn't. Bowel program is the only option available (that I'm even unwillingly up to considering), to give me any sort of regularity and combat against incontinence. It is not natural. There is no privacy. Embarrassment doesn't matter. This morning I had the added discomfort of nausea, which is the only thing equally horrible to bowel program. There I sat, half nude, strapped to a chair, over a toilet, bent with nausea, no means to stop it, or way to clean up, no where to hide, no relief, and all the while I'm enduring my nurse forcing my body to expel what I no longer can. In that moment of nausea I wanted to die. I prayed to God to take me. I couldn't imagine my life any worse. Doubled over with nausea, and choking back tears, I felt I needed to get back into bed, and hoped that lying down would offer some relief. While having bowel program in bed disgusts me way more than doing it over a toilet, it's something I was forced to accept, every night, for the first year and a half, after my injury. Although I hated the thought of having to do it, anything that might take the nausea away, in that moment, was worth doing. I asked my nurse to call my mom in for help, and they rolled me back into the room, and hastily began getting me ready for the hoyer ride back to bed. Just as they started to lift me up, and I felt as though I would vomit, my body decides to defecate, all over my bedroom floor. My mom, and nurse, highly aware of how much this would upset me, rushed around and try to contain the mess, while at the same time get me safely back into my bed. By this point, I'm numb. This is the point where the mind starts to short circuit, because it just can't handle any more trauma. As the nausea subsided, I landed in my bed, and my nurse began to tend to me, while I watched my mother scrub my beige carpet, for the next hour, filled with shoulder pain. What could I do but just lay there and accept it? It's mornings like today that make me want to scream in rage, in the unjustness of it, and makes finding a silver lining to life, near impossible. Who would want this type of life for themselves? The only motivating force in my life to keep going, is often the fact that I feel like I have no other choice. I have to take it, or leave it for what it is, no matter how unhappy I am, or how much I hate the "choices."
It's days like today that make me question God's existence and what he/she/it/they think about my life, and make me question why I should have to continue living. It seems so cruel to me, that society and my religion (the belief system that I was raised with) expect me to endure living with paralysis. I feel like a loving God would understand my suffering and understand my need to escape. Surely, my Earthly parents love me as much as God does, and yet I know if they had it within their power, they'd have healed me right away. I can't even ask them to help me end my suffering, because society rather keep me living, no matter the price I have to pay. It infuriates me that our society (based solely on our laws) values the "life" of 3-5 day old cells (blastocysts) enough to not want to use them for research that could potentially alleviate my suffering, and that of millions of LIVING people, just like me. Our laws dictate that they rather see those cells be thrown away, rather than help me. That's how little my suffering matters, how easy it is to look away. We treat our pets with more respect, compassion and dignity, than we do people like me (people with extreme disability and chronic, incurable illness). I don't get the option to die peacefully. I have to suffer. I feel as though it is irrational and hypocritical to ask me, to expect me to, to demand I live this way. How can we put such a high value on something that has no chance at ever living (outside a womb), and turn a deaf ear to people that live and suffer, every day? How is it that we are compassionate enough to not want to see an animal suffer (when we know there is no cure and prolonged suffering is inevitable), but not enough to allow me to die in peace, with dignity and respect? Instead, I'm asked to live an impossibly difficult life, that no one would ever choose for themselves. Why can't I have the same rights that my dog and cat have? I can't help but feel outraged, and desperately sad, at how trapped I am. I feel like I'm stuck with choices I don't want to choose, and no way out. So here I sit, forced to somehow keep moving forward, while keeping my sanity. It's a predicament I wouldn't wish on my worst of enemies.
Today started like many mornings have, since my accident; sleepless and in pain. I spent the better part of last night uncomfortable, with cold sweats, chills, and mystery chest pressure, keeping me awake. I lie in bed trying to find comfort in the only position that doesn't hurt my shoulders (on my back- which is never how I used to sleep), and toss and turn my head, from left, to right, and back again. All the while, my mind is racing at top speed- apparently, the only speed I have- and I'm trying my best to ignore my discomfort. It's amazing how uncomfortable I can be, despite that fact that I can't actually feel most of my body. The little I can feel is full of annoyances, and the littlest of movements can trigger a leg spasm, move my hair out of place, create an itch I can't scratch, tense up my arm, or any number of stupid little things, that I can try to ignore, or call someone for help. I end up ignoring about half of my impulses, out of decency and consideration for my family/aides. Either way, most every night is a restless night, full of inner turmoil and despair. I can't help but beat myself up, over my accident and cling to the life I had. All of my memories bring with them a certain amount of grief, and I have yet to find a way to let go of what I lost (in both potential for the future and in reality). I spend most my nights trying to distract myself from negative thoughts, and find enough peace to fall asleep. Unfortunately, even sleep is not an escape, as many nights are filled with bad dreams, that make waking up seem somewhat better. I pray and pray, and ask God for a cure, to take me, and spare me the suffering, or at the very least, give me some measure of understanding, as to why my life has to be so difficult. In that respect, last night was the same as every other night since my accident; no answers and little sleep. Once I finally did manage to fall asleep, it was nearly 9am and my nurse was already on her way.
My nurse arrived around nine thirty, and so began my bowel program, most certainly my most hated aspect of life with paralysis. Bleary eyed, sick to my stomach, and depressed to be starting off my day in such a horribly violating way, I say nothing as my mom and nurse begin to strip off my adult diaper (wonderfully sexy garment) and roll me on to the sling. Next, it's time to get pumped up into the hoyer lift, and take the adrenaline filled ride, across the room to my most hated piece of furniture, my commode. It's impossible to explain to fear and mix of sensations that go through my mind, as my body is suspended in mid air, with no means of stopping myself from falling, or way to brace myself for impact. The hoyer lift makes me feel like I'm floating through the air (not in a good way), and unless you are paralyzed, it's hard to imagine how terrifying a small "ride" can seem. It is one small aspect of life that I've learned to tolerate, and although it makes me on edge, once I'm safely strapped into my commode, or landed in my wheelchair, it's not a big deal, and something that makes caring for me easier on my family/aides. As scary as it can be sometimes, it beats getting picked up and carried, which is usually more painful, and more dangerous, for everyone involved. Once I got strapped into the commode, the nurse wheeled me into the bathroom to begin the bowel regime. It's an awful necessity, that has never gotten any easier to deal with.
The only comparison I can think of, to accurately describe my feelings toward bowel program is rape. Although I realize that is a very strong word, with very negative connotations, hear me out. Before my accident, I was a very self conscious person (still am) and had many issues regarding the bathroom (still do). I was very private and couldn't stand the thought of using public restrooms, outside of my home, and a very few select friends' home to EVER "go number two." I can count on one hand the number of times that in almost TWENTY FIVE YEARS of my life on my feet that my IBS forced me into the shame and embarrassment of violating my own code of bathroom conduct. I find everything about poop, and feces related actions (aka-passing gas) humiliating, unladylike, and disgusting. If I had a choice, I'd negate the whole process all together, and have said many times, to many doctors, that I'd gladly trade in food, for a liquid diet, if it meant I could not have to "go" again. Obviously, that is not and option; I must eat and therefore poo. Having a spinal cord injury has made my worst fears a reality. It is truly Hell on Earth. Not only am I forced into revealing ever flaw, and every inch of my naked body, I'm forced into being violated on a near daily basis. Incontinence, and the anxiety over accidents, practically rule my life. I feel shame and embarrassment having to have other adult human beings not only acutely aware of my bodily functions, but up close and personal, in my face, and in my space, whether I want them there or not. I'm forced into accepting another human being, put their finger up my rear end, multiple times, every other morning, to stimulate my body into doing a process, it should be able to do naturally, and on my own. Personal space and privacy are luxuries that do not exist in my life. This morning, like so many other mornings, I had to make a "choice" to accept help, and accept having a bowel regime, despite my embarrassment, loathing, and revulsion to the process, because my only other alternatives are to become impacted, septic, and die, or have a colostomy bag strapped to my side (a bag full of the single most hated and embarrassing thing possible, in my mind). Do you really consider that a choice? I'm forced into accepting the bizarre, unnatural and repulsive, because the only choice, is to become sicker and/or possibly die. My paralysis shoves bowel program down my throat, and silences my voice, because there is no viable alternative. My body no longer answers to me, therefore I'm forced into answering to other people. Right now there is no cure. There's life; paralyzed. Take it, or leave it. That is my only real choice.
My list for reasons to want to die vastly outweighs my reasons for staying. The thing that keeps me here is fear. I don't have a strong faith in God (like many people have). Instead, I have a mountain of fear and doubt. I was raised Catholic, and although I don't believe in much of the religion, I do hope that there is a God. Catholicism is not a very flexible, open-minded religion, in my experience. I attended Catholic school for the first ten years of my schooling, and although I don't buy into most of the rituals and the emphasis the Catholic church puts on going to church and the Pope, the lessons I learned as a child, still have a hold on me. I wish that I had a strong faith in God, any God, because I have seen what peace of mind and strength that faith has given to other people. One of the reasons that turned me off to my childhood belief in God, was the rigidness of the religion I grew up. I consider myself to be a very open minded, liberal person, and those aspects of my personality make it extremely hard for me to believe in the triumphalist type belief system of most organized religions. I've read a lot about (and watched documentaries) about various religions. I enjoy history. I enjoy philosophy and the history of how religions were formed, and came to be. I've read a lot of the Old & New Testament of the Bible throughout my life. It seems absurd to me that God, an omniscient, omnipotent being, that has the capacity to create our entire universe, would be hung over petty rituals and/or the name by which we call him/her/it/them. I can't believe that if there is a God, that he/she/it/them would punish damn someone to an eternity of suffering, despite that person being kind, and good, because that person wasn't born into the right culture, time, or place, or didn't worship him/her/it/them by the right name. I can't stand that people are willing to hurt other people in God's name. It's horribly asinine to think that such a powerful, all knowing being, would want their/his/hers/its creation to waste its energy and time on hurting one another. If most people would be open minded enough to learn about other religions and consider each other, as equal, human beings, it would be obvious, that there are basic messages that transcend all faiths; to love one another.
Before my accident I probably would've classified myself as an Atheist. Now I guess I'm Agnostic. I'm not really sold on any particular God(s) or religion, but I do want to believe in something. Catholicism is very clearly opposed to suicide. Catholicism very clearly states that the only path to heaven is Jesus. I have a VERY hard time accepting both of those "truths." I have a lot of friends of varying faiths, that are good people, that contribute to society in positive ways and are kind to their fellow man. I can't bring myself to worship a God that would condemn my loved ones and friends to a firey abyss, just because they don't call him Jesus. If there is an afterlife I have to believe it's open to all good human beings and that if there is any judgment, that it's fair and just. I'll never be sold on the thought that God would care about insignificant things like clothes or what type of food we eat. My Catholic upbringing causes me to have a lot of fear and anxiety over what will happen to my soul, if I have one. I want to believe that God is not as rigid, jealous and inflexible, as Christianity, Judaism or Islam would have us believe. People say God only gives us what we can handle, but I feel like my life is proof that that isn't true. I can't handle the curve ball that life (or God) has given me. There are so many paradoxes, that keep me always doubting and questioning. I mean, if God loves me, how can he/she/it/them let me suffer? If God has a plan for us, then how can we also have freewill? I'm a logical, realistic person, that makes it very hard for me to believe. I know having faith means blindly believing, but it's not something I can force. On the other hand, the teachings that I was brought up with, very clearly state that I will go to Hell if I give up on life. The thing is, I feel like my situation is not average and I don't know whether God would consider not accepting help, as suicide. I'm not an able bodied person, putting a gun to my head, because my marriage failed, or I lost money in the stock market. My life is sustained by very unconventional means. I'm not healthy. I'm suffering.
It is my doubt and confusion over my faith in God and refusing help that keeps me here. Although I do feel sorry for family, in that I know they would be sad if I died, I feel as though I have already given them 5 1/2 years extra time with me, and I feel that my suffering has been sufficient enough to feel satisfied that I've tried my best, and given them my best effort. I think it would be selfish of them, and cruel to expect any more from me, and hope that despite their grief, that they would understand my death would alleviate my suffering. Besides, if there truly is an afterlife they can draw strength from knowing we'll be reunited. What stops me from giving into my wish to die, is my uncertainty over what will happen to my soul. It's horrible having anxiety over a soul I'm not even convinced I have. All I have is doubt. I'd like to believe that if God does exist, he/she/it/they knows my heart better than anyone, and knows how much I've suffered and how sorry I feel for wanting to give up. I'm don't think refusing help is the same as a healthy person committing suicide. Like I've said in a previous response, if I technically "left my life in God's hands" I'd be dead. I can't care for myself. I'm only here because the resources exist to keep me here. The problem is, I'm not happy. I don't consider this a quality life. I know I have talents. I'm aware I'm gifted in writing and art. The problem is, it's not enough. While I might have the ability to still do certain things, they're not enough to fulfill me. It makes me frustrated, confused and angry that everyone (including God-evidently) would be fine and respect the fact that I don't want to live dependent on machines. I can refuse a vent and get into heaven, but I if I refuse my bowel program, I'm committing suicide and will be damned to hell. Quality of life means more to me than quantity. Most people don't want to admit, or can't understand how awful my life is. No one would want my life for themselves. It seems very harsh to me that I'm forced to endure so much pain and that God would punish me, for not wanting to suffer. It takes A LOT to keep me alive; living a life I hate. The rules of suicide and what God would or wouldn't consider suicide, seem very unfair, confusing and ambiguous. It's fear and doubt that keep me here.
It's fear that keeps me pushing forward, on days like today, when I'm worn down and feeling like I'm forced into accepting horrible conditions. This morning during bowel program, I felt horrible. I was clammy, with cold sweat, and shivering with cold (phantom feelings of cold, in limbs I can no longer feel, on the outside). I wanted to disappear and run away, but I couldn't. Bowel program is the only option available (that I'm even unwillingly up to considering), to give me any sort of regularity and combat against incontinence. It is not natural. There is no privacy. Embarrassment doesn't matter. This morning I had the added discomfort of nausea, which is the only thing equally horrible to bowel program. There I sat, half nude, strapped to a chair, over a toilet, bent with nausea, no means to stop it, or way to clean up, no where to hide, no relief, and all the while I'm enduring my nurse forcing my body to expel what I no longer can. In that moment of nausea I wanted to die. I prayed to God to take me. I couldn't imagine my life any worse. Doubled over with nausea, and choking back tears, I felt I needed to get back into bed, and hoped that lying down would offer some relief. While having bowel program in bed disgusts me way more than doing it over a toilet, it's something I was forced to accept, every night, for the first year and a half, after my injury. Although I hated the thought of having to do it, anything that might take the nausea away, in that moment, was worth doing. I asked my nurse to call my mom in for help, and they rolled me back into the room, and hastily began getting me ready for the hoyer ride back to bed. Just as they started to lift me up, and I felt as though I would vomit, my body decides to defecate, all over my bedroom floor. My mom, and nurse, highly aware of how much this would upset me, rushed around and try to contain the mess, while at the same time get me safely back into my bed. By this point, I'm numb. This is the point where the mind starts to short circuit, because it just can't handle any more trauma. As the nausea subsided, I landed in my bed, and my nurse began to tend to me, while I watched my mother scrub my beige carpet, for the next hour, filled with shoulder pain. What could I do but just lay there and accept it? It's mornings like today that make me want to scream in rage, in the unjustness of it, and makes finding a silver lining to life, near impossible. Who would want this type of life for themselves? The only motivating force in my life to keep going, is often the fact that I feel like I have no other choice. I have to take it, or leave it for what it is, no matter how unhappy I am, or how much I hate the "choices."
It's days like today that make me question God's existence and what he/she/it/they think about my life, and make me question why I should have to continue living. It seems so cruel to me, that society and my religion (the belief system that I was raised with) expect me to endure living with paralysis. I feel like a loving God would understand my suffering and understand my need to escape. Surely, my Earthly parents love me as much as God does, and yet I know if they had it within their power, they'd have healed me right away. I can't even ask them to help me end my suffering, because society rather keep me living, no matter the price I have to pay. It infuriates me that our society (based solely on our laws) values the "life" of 3-5 day old cells (blastocysts) enough to not want to use them for research that could potentially alleviate my suffering, and that of millions of LIVING people, just like me. Our laws dictate that they rather see those cells be thrown away, rather than help me. That's how little my suffering matters, how easy it is to look away. We treat our pets with more respect, compassion and dignity, than we do people like me (people with extreme disability and chronic, incurable illness). I don't get the option to die peacefully. I have to suffer. I feel as though it is irrational and hypocritical to ask me, to expect me to, to demand I live this way. How can we put such a high value on something that has no chance at ever living (outside a womb), and turn a deaf ear to people that live and suffer, every day? How is it that we are compassionate enough to not want to see an animal suffer (when we know there is no cure and prolonged suffering is inevitable), but not enough to allow me to die in peace, with dignity and respect? Instead, I'm asked to live an impossibly difficult life, that no one would ever choose for themselves. Why can't I have the same rights that my dog and cat have? I can't help but feel outraged, and desperately sad, at how trapped I am. I feel like I'm stuck with choices I don't want to choose, and no way out. So here I sit, forced to somehow keep moving forward, while keeping my sanity. It's a predicament I wouldn't wish on my worst of enemies.
Friday, March 4, 2011
Taking Advice, Getting Feedback and Reasons For Sharing
I've gotten quite a lot of feedback, from my last two blogs, which I originally posted in the CareCure (online community related to spinal cord injuries)forums. Besides the wonderfully kind words of encouragement, and empathy, two of the key issues that were brought up were, possible alternatives to some of my most difficult obstacles and suggestions based on personal experience. I really appreciate all the ideas, feedback, life stories and concrete answers that people took the time to write. A few of the issues that I would like to highlight, and expand on reasoning, are the issuses of personal hygiene and my reasons for being so open about my life; even embarrassing and/or painful aspects of life, that most people find hard to discuss.
The number one, hardest aspect of living with paralysis for me is all of the highly intimate hygiene issues that I need help with. One of my biggest stressors is my bowel program (as itis for many people in my situation) and the only real alternative, would be to have a colostomy. This has been suggested to me, both recently and in the past. The thought of a colostomy bag is (to me) 1,000 times worst than BP. Just the thought of it depresses me. No offense, but it's definitely not for me Ideally, not having to go number two in the first place would be my solution. Unfortunately, that's not possible. The whole bodily fluid thing really disturbs me & grosses me out. I'd literally give up eating, if it meant I only had to deal with urine. As much as I love food, I gladly trade in a liquid diet, if it meant I could avoid needing to ever have a bowel movement. That's how much I hate the whole process, in general. I know it's a natural bodily function, that everyone does. I've just always been uptight about it. I guess you could say I'm somewhat "poopaphobic." I don't want to have to do it, or be around it, so the thought of having a bag of it strapped to me, is probably the worst case scenario I can think of. I've always been very private about bathroom & hygiene stuff, so being paralyzed is horrible. I find it disgusting and unladylike. I normaly would've never wanted to discuss it (and find it challenging to be so revealing), but feel it needs to be said, because the average has no clue, and would otherwise (and often does) take this fact for granted. I'm forced into having help with bathroom needs and it's never gotten any easier.
Sometimes I think being a woman, makes it even harder to accept & not be embarrassed. I don't know, but all my guy friends (able bodied & non) are way more easy going & less bothered by stuff like that. I mean let's put it this way, I dated someone for almost six years (also lived together for a portion of that time) and I never once passed gas in front of him. In the 24yrs I was on my feet I never once went number two in a public restroom. So you can imagine, having BP & a catheter is pretty much like hell on earth for me. Not to mention, as a woman, I have to also accept help every month with my period & other various feminine hygiene issues, that men just don't have. All in all, the adjustment to needing help with all personal care ADLs has been difficult.
Just the fact that so many people have to see me naked bothers me. I've always been self conscious and have had body imagine issues. My paralysis has not only made my body even more flawed, and less appealing, it also forces me into showing those flaws to numerous people (on a daily basis), over & over again. Its mortifying having to have someone else do stuff like brush my teeth, shave my under arms, clean my ears, help me blow my nose, acne, etc. I used to go to great lengths (as do most woman- doing my hair, make up, creams, shaving, plucking eye brows, getting manicures, exercise & diet) to look nice and to feel good about myself and feel as though I was pretty. It's not only embarrassing needing help with all personal hygiene needs, it also undermines my dignity and self worth. I'm forced into revealing every flaw and forced into having to ask for help, to look nice and correct imperfections, that under normal circumstances would be totally secret/private. It's all very challenging.
Like I've stated over, and over again, I'm just looking into all of my options. Living with paralysis has not been easy for me, and I'm tired of chronic sickness. This is not my first bout of serious depression, nor is it necessarily my last. Living with paralysis is a daily struggle. Choosing to fight to live the life that I have, is one of the few things that is still within my control. I will continue to do so for as long as I possibly can. I'm just the type of person that likes to think ahead, and take comfort in knowing that I'm in control of whatever aspects of my life that I CAN control. Paralysis has robbed me of almost all of my independence, so I'm forever seeking new ways to take back whatever control I can. My mind is one on the few assets I still have, and although it can at times be a curse (haunting memories and crippling grief) it has allowed me to be able to manage my own affairs and make decisions about my care, and overall quality of life. My mind continues to be the greatest source of pain, and although I realize that my perspective, way of thinking, and acceptance can change over time, I'm the only one that can make those changes. I struggle daily with the inner turmoil, of dealing with the life and choices paralysis gives me, and my sadness and desperate longing to have the type of life I once had. I realize it's a battle that only I can fight.
Last week I was chatting with an online buddy named Mariam about being so depressed lately. She's also a member of the AMFPA. We share a lot in common, in fact she's one of the few people on the planet that I feel like can truly understand where I'm coming from. We're around the same age, both artists and both suffer from similar spinal cord injuries. She's been injured for almost fifteen years now, and is one of those rare gems, in that she's somehow been able to keep it together, keep moving forward and find joy, despite being paralyzed. I had reached out to her, sending her a link to the CC thread, to get her point of view.
We had a long chat over Skype, and I really enjoyed our conversation. It always feels good to vent, but I particularly felt relieved talking with her, because I feel as though she really understands where I'm coming from, and has experienced much of the same struggles that I'm going through. She's amazingly positive and is seemingly much more open minded and receptive to going with the flow, and accepting her life with paralysis, much better than me. She'd probably agree with me, in saying that her current state of acceptance, and/or her strength and perseverance, as well as her current frame of mind, all took time, and that it might not make sense for me to beat myself up, for not being as strong as she is. She readily admitted to me, that living paralysis has also been a struggle for her, and that she also experienced a period of about two to three years (around her five year anniversary), where she was extremely depressed and in a similar dark state, that I'm currently experiencing. She was obviously, able to overcome it, and although she has her bad days, seems more well adjusted and happy with her life, living with paralysis, than I can ever imagine for myself, at this point.
During our discussion, I was expressing my wish for being understood, and how little I feel the average person really knows, what it's like to be paralyzed. I said I especially wished my loved ones understood how much I'm suffering, and how hard it is for me to live this way. Mariam then asked me, "What if they did understand? What difference would that make?" It was the first time anyone had ever asked me that, but I immediately knew the answer. I had to hold back tears to answer her, but managed to respond with a shaky voice, and tell her the answer that's been tugging at my heart and mind for a long time now. It's a two fold answer, that has been my driving force.
Firstly, I feel as though if people really understood what it's like to live a day in my shoes, they'd absolutely want to find a cure. I know in my heart, with 100% certainty, that anyone who could experience the grief, loss, fear, and sense of powerlessness that paralysis causes, that they'd want to fight with every ounce of energy they had to want to cure it. I feel as though, funding for research and emphasis on finding a cure to paralysis would take precedence and support would sky rocket, if more people really knew what it felt like to be paralyzed and to really comprehend how ethereal life is, and that their lives can change, as quickly as mine did, at any given moment. It is for this first reason that I pour my soul out to strangers and open my life up to the general public. As hard and as embarrassing as it can be at time, my goal is education. I want people to wake up, and understand what being paralyzed means.
Secondly, I feel as though if my loved ones truly understood my pain, and could experience all that I've been through, and all that I'm feeling, that they'd be able to let me go. This second part to the answer is what I told Mariam, and is what most often crosses my mind. I feel as though anyone that truly knew my pain, would be able to understand why I long to be free (by death, or by cure) and be at peace to let me go. I often think people expect me to keep marching forward, because they don't (and can't) know what they're really asking of me, and what a struggle it is every day. Although my loved ones might see my death as something horrible, and sad, I'm at a point where I'm tired of the daily battle and would welcome it. I just want to be free again. It doesn't mean I don't love my family and friends, and wouldn't miss them. They just don't understand how hard living can be. It's my hope that by sharing my thoughts and feelings I can help everyone (anyone who is willing to listen) to understand paralysis better and to motivate others to fight for a cure. Even if I never see a cure, I would feel at peace knowing I helped to prevent other people from ever having to experience all that I've been through, if I can inspire others to support finding a cure. Although I have little hope for a cure for myself, I do still wholeheartedly believe that a cure will be found some day. Again, I don't wish to upset anyone. I'm just being honest and sharing my thoughts, and where I'm at, right now in my struggle with paralysis.
Check out my buddy Mariam's website- I love her work!
www.mariampare.com
- Posted using BlogPress from my iPad
The number one, hardest aspect of living with paralysis for me is all of the highly intimate hygiene issues that I need help with. One of my biggest stressors is my bowel program (as itis for many people in my situation) and the only real alternative, would be to have a colostomy. This has been suggested to me, both recently and in the past. The thought of a colostomy bag is (to me) 1,000 times worst than BP. Just the thought of it depresses me. No offense, but it's definitely not for me Ideally, not having to go number two in the first place would be my solution. Unfortunately, that's not possible. The whole bodily fluid thing really disturbs me & grosses me out. I'd literally give up eating, if it meant I only had to deal with urine. As much as I love food, I gladly trade in a liquid diet, if it meant I could avoid needing to ever have a bowel movement. That's how much I hate the whole process, in general. I know it's a natural bodily function, that everyone does. I've just always been uptight about it. I guess you could say I'm somewhat "poopaphobic." I don't want to have to do it, or be around it, so the thought of having a bag of it strapped to me, is probably the worst case scenario I can think of. I've always been very private about bathroom & hygiene stuff, so being paralyzed is horrible. I find it disgusting and unladylike. I normaly would've never wanted to discuss it (and find it challenging to be so revealing), but feel it needs to be said, because the average has no clue, and would otherwise (and often does) take this fact for granted. I'm forced into having help with bathroom needs and it's never gotten any easier.
Sometimes I think being a woman, makes it even harder to accept & not be embarrassed. I don't know, but all my guy friends (able bodied & non) are way more easy going & less bothered by stuff like that. I mean let's put it this way, I dated someone for almost six years (also lived together for a portion of that time) and I never once passed gas in front of him. In the 24yrs I was on my feet I never once went number two in a public restroom. So you can imagine, having BP & a catheter is pretty much like hell on earth for me. Not to mention, as a woman, I have to also accept help every month with my period & other various feminine hygiene issues, that men just don't have. All in all, the adjustment to needing help with all personal care ADLs has been difficult.
Just the fact that so many people have to see me naked bothers me. I've always been self conscious and have had body imagine issues. My paralysis has not only made my body even more flawed, and less appealing, it also forces me into showing those flaws to numerous people (on a daily basis), over & over again. Its mortifying having to have someone else do stuff like brush my teeth, shave my under arms, clean my ears, help me blow my nose, acne, etc. I used to go to great lengths (as do most woman- doing my hair, make up, creams, shaving, plucking eye brows, getting manicures, exercise & diet) to look nice and to feel good about myself and feel as though I was pretty. It's not only embarrassing needing help with all personal hygiene needs, it also undermines my dignity and self worth. I'm forced into revealing every flaw and forced into having to ask for help, to look nice and correct imperfections, that under normal circumstances would be totally secret/private. It's all very challenging.
Like I've stated over, and over again, I'm just looking into all of my options. Living with paralysis has not been easy for me, and I'm tired of chronic sickness. This is not my first bout of serious depression, nor is it necessarily my last. Living with paralysis is a daily struggle. Choosing to fight to live the life that I have, is one of the few things that is still within my control. I will continue to do so for as long as I possibly can. I'm just the type of person that likes to think ahead, and take comfort in knowing that I'm in control of whatever aspects of my life that I CAN control. Paralysis has robbed me of almost all of my independence, so I'm forever seeking new ways to take back whatever control I can. My mind is one on the few assets I still have, and although it can at times be a curse (haunting memories and crippling grief) it has allowed me to be able to manage my own affairs and make decisions about my care, and overall quality of life. My mind continues to be the greatest source of pain, and although I realize that my perspective, way of thinking, and acceptance can change over time, I'm the only one that can make those changes. I struggle daily with the inner turmoil, of dealing with the life and choices paralysis gives me, and my sadness and desperate longing to have the type of life I once had. I realize it's a battle that only I can fight.
Last week I was chatting with an online buddy named Mariam about being so depressed lately. She's also a member of the AMFPA. We share a lot in common, in fact she's one of the few people on the planet that I feel like can truly understand where I'm coming from. We're around the same age, both artists and both suffer from similar spinal cord injuries. She's been injured for almost fifteen years now, and is one of those rare gems, in that she's somehow been able to keep it together, keep moving forward and find joy, despite being paralyzed. I had reached out to her, sending her a link to the CC thread, to get her point of view.
We had a long chat over Skype, and I really enjoyed our conversation. It always feels good to vent, but I particularly felt relieved talking with her, because I feel as though she really understands where I'm coming from, and has experienced much of the same struggles that I'm going through. She's amazingly positive and is seemingly much more open minded and receptive to going with the flow, and accepting her life with paralysis, much better than me. She'd probably agree with me, in saying that her current state of acceptance, and/or her strength and perseverance, as well as her current frame of mind, all took time, and that it might not make sense for me to beat myself up, for not being as strong as she is. She readily admitted to me, that living paralysis has also been a struggle for her, and that she also experienced a period of about two to three years (around her five year anniversary), where she was extremely depressed and in a similar dark state, that I'm currently experiencing. She was obviously, able to overcome it, and although she has her bad days, seems more well adjusted and happy with her life, living with paralysis, than I can ever imagine for myself, at this point.
During our discussion, I was expressing my wish for being understood, and how little I feel the average person really knows, what it's like to be paralyzed. I said I especially wished my loved ones understood how much I'm suffering, and how hard it is for me to live this way. Mariam then asked me, "What if they did understand? What difference would that make?" It was the first time anyone had ever asked me that, but I immediately knew the answer. I had to hold back tears to answer her, but managed to respond with a shaky voice, and tell her the answer that's been tugging at my heart and mind for a long time now. It's a two fold answer, that has been my driving force.
Firstly, I feel as though if people really understood what it's like to live a day in my shoes, they'd absolutely want to find a cure. I know in my heart, with 100% certainty, that anyone who could experience the grief, loss, fear, and sense of powerlessness that paralysis causes, that they'd want to fight with every ounce of energy they had to want to cure it. I feel as though, funding for research and emphasis on finding a cure to paralysis would take precedence and support would sky rocket, if more people really knew what it felt like to be paralyzed and to really comprehend how ethereal life is, and that their lives can change, as quickly as mine did, at any given moment. It is for this first reason that I pour my soul out to strangers and open my life up to the general public. As hard and as embarrassing as it can be at time, my goal is education. I want people to wake up, and understand what being paralyzed means.
Secondly, I feel as though if my loved ones truly understood my pain, and could experience all that I've been through, and all that I'm feeling, that they'd be able to let me go. This second part to the answer is what I told Mariam, and is what most often crosses my mind. I feel as though anyone that truly knew my pain, would be able to understand why I long to be free (by death, or by cure) and be at peace to let me go. I often think people expect me to keep marching forward, because they don't (and can't) know what they're really asking of me, and what a struggle it is every day. Although my loved ones might see my death as something horrible, and sad, I'm at a point where I'm tired of the daily battle and would welcome it. I just want to be free again. It doesn't mean I don't love my family and friends, and wouldn't miss them. They just don't understand how hard living can be. It's my hope that by sharing my thoughts and feelings I can help everyone (anyone who is willing to listen) to understand paralysis better and to motivate others to fight for a cure. Even if I never see a cure, I would feel at peace knowing I helped to prevent other people from ever having to experience all that I've been through, if I can inspire others to support finding a cure. Although I have little hope for a cure for myself, I do still wholeheartedly believe that a cure will be found some day. Again, I don't wish to upset anyone. I'm just being honest and sharing my thoughts, and where I'm at, right now in my struggle with paralysis.
Check out my buddy Mariam's website- I love her work!
www.mariampare.com
- Posted using BlogPress from my iPad
It's Hard Feeling Happy, When You're Feeling Sick.
As I mentioned in my last blog, I've been doing a lot of soul searching and actively seeking out answers to some tough questions. My state of mind is an ever changing battleground, where I find myself forever fighting to find reasons for why I'm suffering, and looking for motivation and purpose to keep moving forward. One of the biggest obstacles that makes living with paralysis such a struggle for me, is chronic illness and feeling physically sick. The near constant discomfort has left me feeling very worn down and has pushed me to examine my life very closely, and ask myself why I try so hard, despite my unhappiness, and if there are any solutions out there, and what all of my options are, regarding my life, as it is.
I recently discussed some of these questions with my doctor. He was kind of vague in his responses. He's a PA with a visiting physicians group. He sees me at home about once a month. Most of his patients are elderly. It gets frustrating at times (even when I go to the hospital) because most doctors (including mine) aren't specialized in dealing with spinal cord injuries. I feel like most of the time we're just playing a guessing game, trying to pin point why I'm feeling sick. Most of the time, I get told it's a UTI or possibly neurological. In other words, they don't really know for sure. Understandably, it's probably just as frustrating for them, because I can only tell them secondary symptoms (since I can't actually feel what's going on) like fever, chills, chest pressure, sweating, etc. Given the fact that I have a catheter, my urine specimens always come back positive for infection, so half the time I wonder if it's a UTI that's making me feel sick or something else. All we ever do is run tests, but never find anything concrete. Honestly, I don't know that a specialist could do much better. I'd just feel more confident if I had more access to doctors that had more experience dealing w/SCIs. The only place we really have in NJ for outpatient care is Kessler Rehab, which is an hour commute. It's just not worth going there, every time I feel sick.
Aside from the emotional trauma and dealing with an insane amount of loss, living with paralysis has been physically taxing as well. One of the biggest problems for me personally, is my ever diminishing tolerance for sitting in my chair. My ability to sit in my chair, be productive, go places (not that I'm often itching to go out) and do things, has gradually become more and more uncomfortable over the past couple of years. The discomfort and the chronic sickness has made it very hard for me to find joy in the things I used to. Ever since I had a bed sore (6cm wide and deep- at its worst- on my upper thigh, below my backside) back in '08 my tolerance for sitting just isn't the same. The first couple of years post accident I could comfortably be up in my chair for 8hrs a day, 7 days a week. Now, I get out of bed on bowel program days (which ends up being like 3 hours on a commode chair-for BP & my shower) and then spend the rest of the day in bed; sitting up in bed for an additional hour or so around dinner time. I try to get into my power chair on non BP days, but lately it all depends how I'm feeling. The thing is, I end up getting very uncomfortable in my chair after only sitting for a few hours. My symptoms vary, but it usually starts off with a clammy sensation, followed by weird tingling throughout my body, then further followed by a gradual pressure building up in my chest and/or abdomen. On top of that, I'm constantly dealing with leg spasms, phantom pain and tingling in my legs and feet. I end up asking my aides or family to check if my catheter is kinked, if my clothes are wrinkled, if Id had an episode of incontinence, or any other visible problem, and we almost always come up short.
I do periodically weight shift while I'm in my chair, and have only ever had two bedsores (one was on my elbow). Most of the time there's just no real rhyme or reason for why I start feeling symptomatic. The chest pressure gets really bad though. It feels like someone is filling me up with air and squeezing my sides all at the same time. I also start to get lethargic and feverish after about four hours of sitting. I've had various tests done to rule out serious heart or lung issues: blood works up, X-ray, CAT scan, sonogram & EKG. All of them came back fine. I take Prilosec OTC and have ruled out indigestion for the most part, because there's no obvious connection to meal times. I had a OBGYN exam to rule out anything on that end, nothing. Although, I have noticed a change in my cycle this last year, in the sense that around that week I feel worse than usual. During that week I'm usually achier, more tired and have more frequent fevers. All in all, it's been a vicious cycle, that has kept be bed bound most of the time. For whatever reason, the symptoms do subside a bit more when I'm lying down (not completely though). Knowing I'm going to feel uncomfortable makes me not want to bother getting up, which in turn lessens my tolerance for sitting up. It's a lose-lose situation. I'm just so tired of feeling nauseous, feverish, achy, and down right icky, 75% of the time. It's kind of like having the flu five days a week. It makes it very hard to be happy, or motivated, when you have the chills and feel discomfort.
I'm at my wits end. On one hand, I want to get up and be more productive. I end up feeling guilty and worthless for being in bed all the time. On the other hand, I legitimately feel sick, and lack the drive to do stuff and risk feeling worse. On BP days for example, I'm wiped by the time the nurse is gone, I'm showered and have eaten breakfast. Just sitting on the commode for three hours is taxing on my body, not to mention the constant stimulation the nurses have to do, to make me go to the bathroom. The whole process is both mentally and physically traumatic for me. It has also created hemorrhoids (how wonderful) that are directly irritated further by the entire process. I never had them before my accident, but I hear they are extremely painful. Although I can't feel the pain directly, it could be one of the contributing factors to my mystery symptoms and discomfort.
I end up chalking up a lot of my discomfort to autonomic dysreflexia, which is something many people with paralysis have to deal with. AD is the body's way of compensating for the fact that Ican't feel It is like nature's way of giving me a warning system. When there's something wrong, like my catheter being pulled, or an ingrown toenail, my body responds by elevating my blood pressure. The alleviation in blood pressure presents itself in different ways: chills, profuse sweating, muscle spams and throbbing headaches. If I start to feel symptomatic, I usually assume it's AD related and try to find the cause. If we do find a reason and fix the problem (such as repositioning me, or flushing the catheter) the symptoms subside almost immediately. Unfortunately, most of the time we don't find an obvious reason. So although I know my depression is a contributing factor to me being unmotivated and dissatisfied with my life, my reasons are not all in my head. My physical condition (aka-paralyzed) is the number one contributing factor to my depression, and my overall health and comfort has made it even harder to remain upbeat. Able bodied or not, no one likes being sick.
Having no real diagnosis or treatment for the chronic pressure, fevers (always low grade and always in the evening) and cold sweats makes me very frustrated and adds to my sense of hopelessness. As it is, I take over a dozen pills every day, and have the BP & catheter to contend with, all of which I absolutely hate. All of which, is unfortunately necessary to keep me alive, and relatively comfortable and healthy. The only problem is, it's obviously not working- at least not well enough. It's especially aggravating that I seem to be forever adding more pills and seeing few results. I take three different medication to help with depression, anxiety and insomnia (Pristiq, Remeron & Xanax). I take four different medications for my bowel & bladder related issues (Senekot, Colace, Detrol & Ditripan), on top of watching my diet. I watch my calorie intake and make sure to eat lots of fruits and/or veggies. Then there's the Prilosec, which is supposed to help with stomach issues and a multi-vitamin. It's bad enough being paralyzed, but feeling gross on top of that, just makes me want to curl up and sleep forever. It's like having a chronic illness, on top of a chronic condition. There's no cure in sight for my paralysis, and there's seemingly nothing to make me feel better. I wonder how many people with spinal cord injuries deal with similar problems. It's hard feeling like no one understands you and even harder feeling like there are no answers. I'm just stuck dealing with it; just like all the emotional pain.
Like I said, I've been feeling very down and tired of struggling so hard to cope with my situation, only to feel empty and sad. It's hard fighting for a life you hate living. That's why I started to seriously consider what it would mean to stop fighting. I mean, in terms of the physical and medical repercussions. It's not to say that I have already decided to stop trying. I'm literally just searching for answers. During these last five and a half years, few people have had any concrete answers to give me. There's no recipe for how to cope with having your life turned upside down over night, or how to deal with finding yourself complete stripped of yur independence. Everyone's situation and injury is different. The emotional scars and finding reasons to move forward have to be dealt with on your own terms. No one can say or do anything to make the emotional aspect of dealing with paralysis easier.
It's just infuriatingly frustrating when there's not any answers for the physical stuff. I get so angry sometimes. It seems so unfair that medical science has no cure; that they patched me up and sentenced me to live the life I have. It seems absurd and cruel to me at times, that my loved ones, doctors and nurses expect me to be happy, being paralyzed. It is not a high quality of life, no matter how you slice it; not to me. I feel I have the right to know all the options available to me, because at the end of the day, I'm the one living my life. I'm the one suffering, both physically and mentally. I'm the one that has to endure bowel programs, chronic aches, lack of privacy, cope with all of my memories and all of the loss. I never get a break from it. I never have the luxury of not thinking about it. I'm stuck, in every sense of the word.
I want to know what to expect if I were to say, enough is enough. What would happen if I stop having a bowel regime? What would that do, to a person in my condition? My doctor didn't really have an answer to that question. So I'm left wondering, who would have the answers? I'm not even sure who to ask, for some of my questions. That's why I've opened the subject up to general discussion. I figure there might be people out there who went through something similar with loved ones, or doctors, or nurses that have experience, working with people with paralysis and palliative care. My doctor thought I would qualify for hospice, if I decided to refuse nutrition, hydration and my treatments. He didn't know for sure. I'm wondering who would know. It's not as if I'm taking this matter lightly, and just saying I'm too sad, so I'm going to stop eating. I'm just curious to know exactly what my rights are and what to expect, from a medical perspective, if I chose not to sustain my life; if I decided to refuse help. In a way, I feel like everyone is tip-toeing around the answers, even if they know them, out of fear. It's as if people think the moment I have a few answers I'm going to die that very day. That's not the case. Surely, the thought of starving myself to death does not sound pleasant, and I'm in no rush to find out what it's like. I have looked into it though, as it is one of my only means of escape.
I've read up on the right to refuse nutrition and hydration. There is information based on eye witness accounts. For example, I read it's best not to intake any water at all, because it only prolongs the suffering. I read instead, you should just use a sponge to moisten the lips, to help alleviate the dryness, due to thirst and dehydration. I want answers, because if I really felt as though I absolutely had no will left to fight, I'd want to make my last days the most comfortable as possible. Refusing bowel program and what ever else, I'd decide to stop, would be careful decisions that I want to make based thinking things through and only ever as an absolute last resort.
I realize this might all seem morbid, and/or suicidal to the average healthy individual. The truth of the matter is, I have very little control over anything in my life and I've been hell and back. I know exactly what it's like to be on the brink of death. I've experienced being dependent on machines for life support. My life span is not that of the average person. I am not healthy. I know what it's like to feel like a burden and to have put family in the position to have to make life and death decisions for me. Therefore, I feel as though I both have to and want consider ALL of my options. I've already had to put my wishes down in writing, in my advanced directive, in case I'm unable to communicate my wants. I'm just at a place right now, where I want to know all my options, even if I decide to exercise while I still can communicate them. I mean, my living well basically already states everything I'm asking. I'm just wondering what I'd go through, and/or experience physically, based on medical experience and advice.
- Posted using BlogPress from my iPad
I recently discussed some of these questions with my doctor. He was kind of vague in his responses. He's a PA with a visiting physicians group. He sees me at home about once a month. Most of his patients are elderly. It gets frustrating at times (even when I go to the hospital) because most doctors (including mine) aren't specialized in dealing with spinal cord injuries. I feel like most of the time we're just playing a guessing game, trying to pin point why I'm feeling sick. Most of the time, I get told it's a UTI or possibly neurological. In other words, they don't really know for sure. Understandably, it's probably just as frustrating for them, because I can only tell them secondary symptoms (since I can't actually feel what's going on) like fever, chills, chest pressure, sweating, etc. Given the fact that I have a catheter, my urine specimens always come back positive for infection, so half the time I wonder if it's a UTI that's making me feel sick or something else. All we ever do is run tests, but never find anything concrete. Honestly, I don't know that a specialist could do much better. I'd just feel more confident if I had more access to doctors that had more experience dealing w/SCIs. The only place we really have in NJ for outpatient care is Kessler Rehab, which is an hour commute. It's just not worth going there, every time I feel sick.
Aside from the emotional trauma and dealing with an insane amount of loss, living with paralysis has been physically taxing as well. One of the biggest problems for me personally, is my ever diminishing tolerance for sitting in my chair. My ability to sit in my chair, be productive, go places (not that I'm often itching to go out) and do things, has gradually become more and more uncomfortable over the past couple of years. The discomfort and the chronic sickness has made it very hard for me to find joy in the things I used to. Ever since I had a bed sore (6cm wide and deep- at its worst- on my upper thigh, below my backside) back in '08 my tolerance for sitting just isn't the same. The first couple of years post accident I could comfortably be up in my chair for 8hrs a day, 7 days a week. Now, I get out of bed on bowel program days (which ends up being like 3 hours on a commode chair-for BP & my shower) and then spend the rest of the day in bed; sitting up in bed for an additional hour or so around dinner time. I try to get into my power chair on non BP days, but lately it all depends how I'm feeling. The thing is, I end up getting very uncomfortable in my chair after only sitting for a few hours. My symptoms vary, but it usually starts off with a clammy sensation, followed by weird tingling throughout my body, then further followed by a gradual pressure building up in my chest and/or abdomen. On top of that, I'm constantly dealing with leg spasms, phantom pain and tingling in my legs and feet. I end up asking my aides or family to check if my catheter is kinked, if my clothes are wrinkled, if Id had an episode of incontinence, or any other visible problem, and we almost always come up short.
I do periodically weight shift while I'm in my chair, and have only ever had two bedsores (one was on my elbow). Most of the time there's just no real rhyme or reason for why I start feeling symptomatic. The chest pressure gets really bad though. It feels like someone is filling me up with air and squeezing my sides all at the same time. I also start to get lethargic and feverish after about four hours of sitting. I've had various tests done to rule out serious heart or lung issues: blood works up, X-ray, CAT scan, sonogram & EKG. All of them came back fine. I take Prilosec OTC and have ruled out indigestion for the most part, because there's no obvious connection to meal times. I had a OBGYN exam to rule out anything on that end, nothing. Although, I have noticed a change in my cycle this last year, in the sense that around that week I feel worse than usual. During that week I'm usually achier, more tired and have more frequent fevers. All in all, it's been a vicious cycle, that has kept be bed bound most of the time. For whatever reason, the symptoms do subside a bit more when I'm lying down (not completely though). Knowing I'm going to feel uncomfortable makes me not want to bother getting up, which in turn lessens my tolerance for sitting up. It's a lose-lose situation. I'm just so tired of feeling nauseous, feverish, achy, and down right icky, 75% of the time. It's kind of like having the flu five days a week. It makes it very hard to be happy, or motivated, when you have the chills and feel discomfort.
I'm at my wits end. On one hand, I want to get up and be more productive. I end up feeling guilty and worthless for being in bed all the time. On the other hand, I legitimately feel sick, and lack the drive to do stuff and risk feeling worse. On BP days for example, I'm wiped by the time the nurse is gone, I'm showered and have eaten breakfast. Just sitting on the commode for three hours is taxing on my body, not to mention the constant stimulation the nurses have to do, to make me go to the bathroom. The whole process is both mentally and physically traumatic for me. It has also created hemorrhoids (how wonderful) that are directly irritated further by the entire process. I never had them before my accident, but I hear they are extremely painful. Although I can't feel the pain directly, it could be one of the contributing factors to my mystery symptoms and discomfort.
I end up chalking up a lot of my discomfort to autonomic dysreflexia, which is something many people with paralysis have to deal with. AD is the body's way of compensating for the fact that Ican't feel It is like nature's way of giving me a warning system. When there's something wrong, like my catheter being pulled, or an ingrown toenail, my body responds by elevating my blood pressure. The alleviation in blood pressure presents itself in different ways: chills, profuse sweating, muscle spams and throbbing headaches. If I start to feel symptomatic, I usually assume it's AD related and try to find the cause. If we do find a reason and fix the problem (such as repositioning me, or flushing the catheter) the symptoms subside almost immediately. Unfortunately, most of the time we don't find an obvious reason. So although I know my depression is a contributing factor to me being unmotivated and dissatisfied with my life, my reasons are not all in my head. My physical condition (aka-paralyzed) is the number one contributing factor to my depression, and my overall health and comfort has made it even harder to remain upbeat. Able bodied or not, no one likes being sick.
Having no real diagnosis or treatment for the chronic pressure, fevers (always low grade and always in the evening) and cold sweats makes me very frustrated and adds to my sense of hopelessness. As it is, I take over a dozen pills every day, and have the BP & catheter to contend with, all of which I absolutely hate. All of which, is unfortunately necessary to keep me alive, and relatively comfortable and healthy. The only problem is, it's obviously not working- at least not well enough. It's especially aggravating that I seem to be forever adding more pills and seeing few results. I take three different medication to help with depression, anxiety and insomnia (Pristiq, Remeron & Xanax). I take four different medications for my bowel & bladder related issues (Senekot, Colace, Detrol & Ditripan), on top of watching my diet. I watch my calorie intake and make sure to eat lots of fruits and/or veggies. Then there's the Prilosec, which is supposed to help with stomach issues and a multi-vitamin. It's bad enough being paralyzed, but feeling gross on top of that, just makes me want to curl up and sleep forever. It's like having a chronic illness, on top of a chronic condition. There's no cure in sight for my paralysis, and there's seemingly nothing to make me feel better. I wonder how many people with spinal cord injuries deal with similar problems. It's hard feeling like no one understands you and even harder feeling like there are no answers. I'm just stuck dealing with it; just like all the emotional pain.
Like I said, I've been feeling very down and tired of struggling so hard to cope with my situation, only to feel empty and sad. It's hard fighting for a life you hate living. That's why I started to seriously consider what it would mean to stop fighting. I mean, in terms of the physical and medical repercussions. It's not to say that I have already decided to stop trying. I'm literally just searching for answers. During these last five and a half years, few people have had any concrete answers to give me. There's no recipe for how to cope with having your life turned upside down over night, or how to deal with finding yourself complete stripped of yur independence. Everyone's situation and injury is different. The emotional scars and finding reasons to move forward have to be dealt with on your own terms. No one can say or do anything to make the emotional aspect of dealing with paralysis easier.
It's just infuriatingly frustrating when there's not any answers for the physical stuff. I get so angry sometimes. It seems so unfair that medical science has no cure; that they patched me up and sentenced me to live the life I have. It seems absurd and cruel to me at times, that my loved ones, doctors and nurses expect me to be happy, being paralyzed. It is not a high quality of life, no matter how you slice it; not to me. I feel I have the right to know all the options available to me, because at the end of the day, I'm the one living my life. I'm the one suffering, both physically and mentally. I'm the one that has to endure bowel programs, chronic aches, lack of privacy, cope with all of my memories and all of the loss. I never get a break from it. I never have the luxury of not thinking about it. I'm stuck, in every sense of the word.
I want to know what to expect if I were to say, enough is enough. What would happen if I stop having a bowel regime? What would that do, to a person in my condition? My doctor didn't really have an answer to that question. So I'm left wondering, who would have the answers? I'm not even sure who to ask, for some of my questions. That's why I've opened the subject up to general discussion. I figure there might be people out there who went through something similar with loved ones, or doctors, or nurses that have experience, working with people with paralysis and palliative care. My doctor thought I would qualify for hospice, if I decided to refuse nutrition, hydration and my treatments. He didn't know for sure. I'm wondering who would know. It's not as if I'm taking this matter lightly, and just saying I'm too sad, so I'm going to stop eating. I'm just curious to know exactly what my rights are and what to expect, from a medical perspective, if I chose not to sustain my life; if I decided to refuse help. In a way, I feel like everyone is tip-toeing around the answers, even if they know them, out of fear. It's as if people think the moment I have a few answers I'm going to die that very day. That's not the case. Surely, the thought of starving myself to death does not sound pleasant, and I'm in no rush to find out what it's like. I have looked into it though, as it is one of my only means of escape.
I've read up on the right to refuse nutrition and hydration. There is information based on eye witness accounts. For example, I read it's best not to intake any water at all, because it only prolongs the suffering. I read instead, you should just use a sponge to moisten the lips, to help alleviate the dryness, due to thirst and dehydration. I want answers, because if I really felt as though I absolutely had no will left to fight, I'd want to make my last days the most comfortable as possible. Refusing bowel program and what ever else, I'd decide to stop, would be careful decisions that I want to make based thinking things through and only ever as an absolute last resort.
I realize this might all seem morbid, and/or suicidal to the average healthy individual. The truth of the matter is, I have very little control over anything in my life and I've been hell and back. I know exactly what it's like to be on the brink of death. I've experienced being dependent on machines for life support. My life span is not that of the average person. I am not healthy. I know what it's like to feel like a burden and to have put family in the position to have to make life and death decisions for me. Therefore, I feel as though I both have to and want consider ALL of my options. I've already had to put my wishes down in writing, in my advanced directive, in case I'm unable to communicate my wants. I'm just at a place right now, where I want to know all my options, even if I decide to exercise while I still can communicate them. I mean, my living well basically already states everything I'm asking. I'm just wondering what I'd go through, and/or experience physically, based on medical experience and advice.
- Posted using BlogPress from my iPad
Questioning Life & My Options
I've come to a point in my life where I find myself at a crossroad. I’ve been struggling the last five and a half years living with paralysis. It’s impossible to truly express the emotional rollercoaster ride that I’ve been on, since June 2005. I’ve tried my best to be open, about my thoughts and feelings. I’ve tried very hard to convey the magnitude of loss that I sustained, due to my injury, as well as the hardships of living with paralysis on a daily basis. Despite my best efforts, I feel like the average person can never understand how much I’ve suffered and continue to suffer. Words alone, aren’t enough to garnish empathy; sympathy perhaps. Even the people closest to me, that witness all that I have to endure, can never know what it’s like to live in my shoes. Although I often seek advice from other people living with paralysis, the pool of people that have/are lived/living through what I have/am, is very small. There aren’t many women in their early thirties with high level, complete spinal cord injuries. Even those that are out there, everyone’s life before their injury and at the point of injury differ. It’s near impossible to find other women that were injured in their mid twenties, that also lost careers, relationships, and everything else in between. While I appreciate the input and advice I’ve been given by injured men, I feel a huge disconnect and feel very isolated and lonely. The few women I have met, that I do consider able to understand me, are mostly all struggling just as much as I am, to cope with the insane amount of loss and change that our injuries have left us with.
Paralysis is so unique a state of being, that many times the things I experience (sensations, or lack thereof) have no comparison to when I was on my feet. Unless you’ve lived through it, you have no idea what it’s like. Anything you imagine is pale in comparison to what it’s like to live with it. There is no way to simulate the lack of feeling, on such as scale as a high level spinal cord injury. I’m not just paralyzed, I’m imprisoned. I’m cut off from 85% of my body. I can only feel my head, neck, shoulders, some of my outer arm (only up to & not including the elbow) and half of my breasts (top half). It’s as if the rest of me no longer exists in certain respects, like outside touch, or stimulation. Unfortunately, I do feel phantom pains, pressure and discomfort, that has no real rhyme or reason, and usually has no medical diagnosis, or solution. There is no way to fully grasp how it feels to lose all sense of independence and dignity overnight. My spinal cord injury stole my ability to be self sufficient in a matter of seconds, and I’ve been wrestling with how to cope with the void left behind, for almost six years. My injury has left me feeling constantly vulnerable, anxious, depressed, full of regret, lost, deprived and scared. While I’ve tried my best to remain positive, despite the bleak reality that a cure is most likely never going to be a reality for me, I feel justified in feeling the way that I do. I’ve made proactive steps ever since day one, to stay as positive and as mentally strong as possible, so that I could somehow keep moving forward, against my inner dissatisfaction of my life and the compromises I’m forced into making every day. I’ve sought counseling, gone to therapy, take an ever growing number of pills (anti-depressants, sleep aides and anti-anxiety meds), share with my peers, write, paint, pray meditate, distraction, etc. and feel like I’m running on vapors and running out of options. I’ve been pushing forward more so for my loved ones, than for myself, and find it increasingly harder to find reason, and/or motivation to essentially keep torturing myself.
It’s maddeningly frustrating to feel like I constantly have to justify for why I feel so down. I get so angry inside and just want to scream sometimes, “are you blind?!” to those people who expect me to accept all that I’ve lost and just to keep moving on with a smile on my face. Most of the time I assume it’s ignorance that makes people have unrealistic expectations. Reality is, most people don’t have a clue what it’s like to be forced into (out of lack of choice) accepting help: to need another adult to bathe, feed, and dress you, to have no control over bodily functions, to need a bowel regime and catheter, to need another person’s help with intimate hygiene tasks, like mouth care, shaving and menstruation, to need help for the smallest and otherwise seemingly insignificant tasks like scratching and itch, or fixing a wrinkle in your clothing, almost total lack of privacy, to be devoid of sensations and cut off from almost all physical intimacy and near total deprivation of sexual pleasure. Is it right for people to expect me (and people in my similar situation) to keep living this way, knowing full well that no one would ever knowingly choose to live this way? I mean, when someone is newly injured there’s always the hope of a cure. Once an individual is medically stable, they’re pretty much stuck living with paralysis. Once reality really hits, and/or hope for a cure fades away, what choices are we left with? Do I really have a choice but to cope the best as I can? Is it right to impose such a harsh quality of life onto someone? At times, I wish I wouldn’t have had that initial hope; that I would’ve given up when death would’ve come easily. Instead, I fought (and continue) to live a compromised version of my old life. It just never seems to get any easier. In fact, coping has gotten progressively harder, and my hope for my old life has faded away. I’m nearly always sad and feel trapped, with few options.
Since my injury, I’ve thought long and hard about quality of life, and about death. I’ve had to. I’ve put my wishes down in my living will, and often wish I would’ve seriously considered what I deemed as quality, before my accident. If I had the living will I have now, at the time of my accident, I would’ve spared myself the last five and a half years of pain. After the trauma and sheer terror of my first year, post accident, I know for certain that I never want to live reliant on machines. I feel it’s bad enough to be completely reliant on people and medication, let alone needing a ventilator, or treatment like dialysis. I’ve been on a ventilator, completely paralyzed. It was a hell on earth that I never want to relive. As scary as death seems to me, it offers the hope of eternal life, or at the very least, an escape from the chronic sickness and emotional pain that I feel every day. Although, I have mixed feelings of sadness for my loved ones and fear, for myself, I find myself contemplating my own mortality on a daily basis. What options do I have? It’s not so easy as just saying, “I give up.” If that were the case, I’m sure many people that are living with paralysis would not be here. At this point, my future seems bleak and it’s hard to be in the dark state that I’m currently in.
There are like I said earlier, people out there that do have a better understanding of my situation, and are somehow able to surpass all of obstacles of paralysis and find happiness. So then I begin to wonder if I’m just weak, for not being able to find joy, and for being so unhappy. Of the people that I know that are living with paralysis, I can’t help but wonder how it is that some of them have continued to try moving forward for decades. I don’t want to live into my forties, if it means I’m still living in a chair. However, I find “giving up” takes perhaps more courage than just scraping by. What are my realist options? I have the right to refuse nutrition, hydration, medications and treatments. What does that really mean? I feel like a lot of my initial strength to fight to live, came out of ignorance and denial of what my life would be like. I’m at a point where I feel like I’m on the verge of going crazy, and I don’t want to choose to die out of ignorance either. The process I’d have to endure, in order to die, might be so unbearable that I might be tempted into backing out, and fight to live again. It’s a horribly sad thought that I’ve thought about many times. Understandably, most people don’t want to contemplate death, or indulge my suicidal tendencies, by giving me straight answers. Then again, up until recently, I was not seeking out specific answers.
I feel as though I’m battling myself, in finding reasons to keep moving forward. In the late hours of the night, I think about my life and the choices I’ve made. I beat myself up over regrets and find myself pleading and begging God to be merciful. Every night, for a long while, I’ve asked God (if he/she exists) to either cure me, or take me. Obviously, I’ve yet to get a response. I can’t help but wrestle with myself over morals and ethics. I wonder if giving up on relying on others is the same as taking my own life. The superstitious (or perhaps faith) part of me wants to know if God would consider refusal of help suicide, and what that would mean for my soul (if I have one). No one can give me concrete answers to those questions. All I know is that it is illegal for my loved ones, or medical professionals to assist me. Therefore, I can’t ask for an injection, or a handful of pills (a quick, peaceful death), without putting that person at criminal liability and/or horrible guilt. I know that if it were legal here (like in Switzerland) I could find it in myself to ask for help, but since it isn’t, I can’t and don’t expect anyone to ruin their own life, for the sake of ending mine. Therefore, my only real options are to refuse the treatments, medication and/or food and water that are keeping me alive. I am curious to know the medical repercussions of such a decision would be and what I’d have to endure, if I chose to exercise my rights. What kind of death would it be, to starve myself of food and water? How long would it take? What would happen if I refused to continue my bowel regime and/or stopped taking my medication? Would those decisions cause a lot of physical pain? Would I qualify for palliative care, like hospice? Would I be entitled to morphine, or something similar, to ease the pain and stress of hunger, impaction, and/or whatever discomforts that refusing those things would bring? What means would be the quickest, least painful way? I did ask my doctor some of these questions, but only got vague responses. I think that’s mostly because he wants me to keep on living, but also out of lack of knowledge. So I’m left wondering if I can find the answers, and if so where? Although part of me feels like a failure, or weak for considering death, I feel like I have the right to know the answers to these questions.
I hesitated to even post this, as I'm sure there are many that might not agree with, or condone this type of dialogue, or conversation. I also know that this blog will cause my loved ones pain. In fact, I posted this on the CareCure forums first (about a week ago), in hopes of connecting with other people with SCIs, and giving myself a chance to gather some feedback from people in similar situations. I stirred up a decent response, and have been continuing to reply to the ideas, and comments that people have shared with me.
I’m just looking for answers. I don’t expect anyone to advocate the thought of giving up on life. I understand that there are many people that are fine with their lives, and living with paralysis. I also expect that most anyone who reads this will probably try and dissuade me from taking drastic measures and offer me I pep talk. I’m not even saying that I am giving up. I just want to know what my options are, at this point in my life. I realize that I’m at a very low point; that’s precisely why I’m seeking help. I don’t want to feel miserable, but I am.
- Posted using BlogPress from my iPad
Paralysis is so unique a state of being, that many times the things I experience (sensations, or lack thereof) have no comparison to when I was on my feet. Unless you’ve lived through it, you have no idea what it’s like. Anything you imagine is pale in comparison to what it’s like to live with it. There is no way to simulate the lack of feeling, on such as scale as a high level spinal cord injury. I’m not just paralyzed, I’m imprisoned. I’m cut off from 85% of my body. I can only feel my head, neck, shoulders, some of my outer arm (only up to & not including the elbow) and half of my breasts (top half). It’s as if the rest of me no longer exists in certain respects, like outside touch, or stimulation. Unfortunately, I do feel phantom pains, pressure and discomfort, that has no real rhyme or reason, and usually has no medical diagnosis, or solution. There is no way to fully grasp how it feels to lose all sense of independence and dignity overnight. My spinal cord injury stole my ability to be self sufficient in a matter of seconds, and I’ve been wrestling with how to cope with the void left behind, for almost six years. My injury has left me feeling constantly vulnerable, anxious, depressed, full of regret, lost, deprived and scared. While I’ve tried my best to remain positive, despite the bleak reality that a cure is most likely never going to be a reality for me, I feel justified in feeling the way that I do. I’ve made proactive steps ever since day one, to stay as positive and as mentally strong as possible, so that I could somehow keep moving forward, against my inner dissatisfaction of my life and the compromises I’m forced into making every day. I’ve sought counseling, gone to therapy, take an ever growing number of pills (anti-depressants, sleep aides and anti-anxiety meds), share with my peers, write, paint, pray meditate, distraction, etc. and feel like I’m running on vapors and running out of options. I’ve been pushing forward more so for my loved ones, than for myself, and find it increasingly harder to find reason, and/or motivation to essentially keep torturing myself.
It’s maddeningly frustrating to feel like I constantly have to justify for why I feel so down. I get so angry inside and just want to scream sometimes, “are you blind?!” to those people who expect me to accept all that I’ve lost and just to keep moving on with a smile on my face. Most of the time I assume it’s ignorance that makes people have unrealistic expectations. Reality is, most people don’t have a clue what it’s like to be forced into (out of lack of choice) accepting help: to need another adult to bathe, feed, and dress you, to have no control over bodily functions, to need a bowel regime and catheter, to need another person’s help with intimate hygiene tasks, like mouth care, shaving and menstruation, to need help for the smallest and otherwise seemingly insignificant tasks like scratching and itch, or fixing a wrinkle in your clothing, almost total lack of privacy, to be devoid of sensations and cut off from almost all physical intimacy and near total deprivation of sexual pleasure. Is it right for people to expect me (and people in my similar situation) to keep living this way, knowing full well that no one would ever knowingly choose to live this way? I mean, when someone is newly injured there’s always the hope of a cure. Once an individual is medically stable, they’re pretty much stuck living with paralysis. Once reality really hits, and/or hope for a cure fades away, what choices are we left with? Do I really have a choice but to cope the best as I can? Is it right to impose such a harsh quality of life onto someone? At times, I wish I wouldn’t have had that initial hope; that I would’ve given up when death would’ve come easily. Instead, I fought (and continue) to live a compromised version of my old life. It just never seems to get any easier. In fact, coping has gotten progressively harder, and my hope for my old life has faded away. I’m nearly always sad and feel trapped, with few options.
Since my injury, I’ve thought long and hard about quality of life, and about death. I’ve had to. I’ve put my wishes down in my living will, and often wish I would’ve seriously considered what I deemed as quality, before my accident. If I had the living will I have now, at the time of my accident, I would’ve spared myself the last five and a half years of pain. After the trauma and sheer terror of my first year, post accident, I know for certain that I never want to live reliant on machines. I feel it’s bad enough to be completely reliant on people and medication, let alone needing a ventilator, or treatment like dialysis. I’ve been on a ventilator, completely paralyzed. It was a hell on earth that I never want to relive. As scary as death seems to me, it offers the hope of eternal life, or at the very least, an escape from the chronic sickness and emotional pain that I feel every day. Although, I have mixed feelings of sadness for my loved ones and fear, for myself, I find myself contemplating my own mortality on a daily basis. What options do I have? It’s not so easy as just saying, “I give up.” If that were the case, I’m sure many people that are living with paralysis would not be here. At this point, my future seems bleak and it’s hard to be in the dark state that I’m currently in.
There are like I said earlier, people out there that do have a better understanding of my situation, and are somehow able to surpass all of obstacles of paralysis and find happiness. So then I begin to wonder if I’m just weak, for not being able to find joy, and for being so unhappy. Of the people that I know that are living with paralysis, I can’t help but wonder how it is that some of them have continued to try moving forward for decades. I don’t want to live into my forties, if it means I’m still living in a chair. However, I find “giving up” takes perhaps more courage than just scraping by. What are my realist options? I have the right to refuse nutrition, hydration, medications and treatments. What does that really mean? I feel like a lot of my initial strength to fight to live, came out of ignorance and denial of what my life would be like. I’m at a point where I feel like I’m on the verge of going crazy, and I don’t want to choose to die out of ignorance either. The process I’d have to endure, in order to die, might be so unbearable that I might be tempted into backing out, and fight to live again. It’s a horribly sad thought that I’ve thought about many times. Understandably, most people don’t want to contemplate death, or indulge my suicidal tendencies, by giving me straight answers. Then again, up until recently, I was not seeking out specific answers.
I feel as though I’m battling myself, in finding reasons to keep moving forward. In the late hours of the night, I think about my life and the choices I’ve made. I beat myself up over regrets and find myself pleading and begging God to be merciful. Every night, for a long while, I’ve asked God (if he/she exists) to either cure me, or take me. Obviously, I’ve yet to get a response. I can’t help but wrestle with myself over morals and ethics. I wonder if giving up on relying on others is the same as taking my own life. The superstitious (or perhaps faith) part of me wants to know if God would consider refusal of help suicide, and what that would mean for my soul (if I have one). No one can give me concrete answers to those questions. All I know is that it is illegal for my loved ones, or medical professionals to assist me. Therefore, I can’t ask for an injection, or a handful of pills (a quick, peaceful death), without putting that person at criminal liability and/or horrible guilt. I know that if it were legal here (like in Switzerland) I could find it in myself to ask for help, but since it isn’t, I can’t and don’t expect anyone to ruin their own life, for the sake of ending mine. Therefore, my only real options are to refuse the treatments, medication and/or food and water that are keeping me alive. I am curious to know the medical repercussions of such a decision would be and what I’d have to endure, if I chose to exercise my rights. What kind of death would it be, to starve myself of food and water? How long would it take? What would happen if I refused to continue my bowel regime and/or stopped taking my medication? Would those decisions cause a lot of physical pain? Would I qualify for palliative care, like hospice? Would I be entitled to morphine, or something similar, to ease the pain and stress of hunger, impaction, and/or whatever discomforts that refusing those things would bring? What means would be the quickest, least painful way? I did ask my doctor some of these questions, but only got vague responses. I think that’s mostly because he wants me to keep on living, but also out of lack of knowledge. So I’m left wondering if I can find the answers, and if so where? Although part of me feels like a failure, or weak for considering death, I feel like I have the right to know the answers to these questions.
I hesitated to even post this, as I'm sure there are many that might not agree with, or condone this type of dialogue, or conversation. I also know that this blog will cause my loved ones pain. In fact, I posted this on the CareCure forums first (about a week ago), in hopes of connecting with other people with SCIs, and giving myself a chance to gather some feedback from people in similar situations. I stirred up a decent response, and have been continuing to reply to the ideas, and comments that people have shared with me.
I’m just looking for answers. I don’t expect anyone to advocate the thought of giving up on life. I understand that there are many people that are fine with their lives, and living with paralysis. I also expect that most anyone who reads this will probably try and dissuade me from taking drastic measures and offer me I pep talk. I’m not even saying that I am giving up. I just want to know what my options are, at this point in my life. I realize that I’m at a very low point; that’s precisely why I’m seeking help. I don’t want to feel miserable, but I am.
- Posted using BlogPress from my iPad
Thursday, February 10, 2011
Haiku: Wish To Be Set Free
Prisoner within
Trapped inside my own body
Longing to escape
Deprived of feeling
Yearning for lost sensations
Overwhelming loss
Haunting memories
Wishing for my freedom back
Wanting to forget
Praying for a cure
Accepting reality
Confronting my fears
Robbed of privacy
Feeling like I'm a burden
Stolen dignity
Envious of all
Dreaming of the life I had
Plagued by jealousy
Stranger in my skin
Life will never be the same
Wish to be set free
Trapped inside my own body
Longing to escape
Deprived of feeling
Yearning for lost sensations
Overwhelming loss
Haunting memories
Wishing for my freedom back
Wanting to forget
Praying for a cure
Accepting reality
Confronting my fears
Robbed of privacy
Feeling like I'm a burden
Stolen dignity
Envious of all
Dreaming of the life I had
Plagued by jealousy
Stranger in my skin
Life will never be the same
Wish to be set free
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