As many of you know, I've been struggling lately, with my situation, and life in general. Living with paralysis (especially a high level, complete spinal cord injury) is an ongoing struggle. Last weekend marked the ninth anniversary of 9/11, and it got me thinking of how fleeting life really is. So much has changed for me, since that fateful day, it's almost unbelievable. I'm certain, if anyone would have told me then, what I know now, about the world and my personal life, I would've have surely thought they were insane. Both 9/11 and my accident, have been hard realities to cope with. Both situations are life lessons, in how little control we have over our own lives, and how quickly life can change, or even end.
Although I thankfully did not lose a loved one that day, I know of people that have, within my community and even had a student, that had lost her father. I'm sure, for those families that did lose a loved one, the harsh reality of life's transient nature is still a raw, painful reality. While I'm sure nine years seems like a short time, to the victims families, I'm guessing most people have put the events of that day in the back of their minds. Yes, everyone else pays their respects, and honors 9/11 as a memorial, but I doubt most people take the time to reflect on the lessons of that day, or give thanks for the fact that they are still healthy, and alive. For most people, the after effects of 9/11 are a distant memory, as is the thought that each day is a gift. People tend to forget life's lessons, unless they have a constant reminder of its consequences. I mention my accident, as an example, because I live with the after effects of that day, every day. I can't put that day in the back of my mind, just as those people who were directly effected, by the 9/11 attacks, will be reminded of that day, every day.
I'm sure everyone old enough to remember the day of September 11, 2001, will never forget the details of that day. Living on the East Coast, New Jersey specifically, had a huge impact on how I was effected personally, by the terror attacks of that day, and how the attacks still effect me to this day. The Twin Towers, and lower Manhattan, had been a familiar sight my entire life. Growing up in Union County, I could often see the NY skyline, on clear days. My family moved a bit further south, when I entered high school, but about half of my neighbors in Old Bridge were all former New Yorkers, and most of them commute to the city every morning, by bus. My senior year, I dated a boy from Queens and went into New York regularly. He taught me how to navigate the subway system, which I love, and miss riding. As a college student, I took the train into the city at least once a month, my entire four years. I always had assignments to complete, by visiting the museums and galleries, plus I loved spending time downtown in Chinatown and Little Italy. Many times, I'd take the train into Manhattan by myself, and spend all day at the M.E.T. working on term papers, or just for fun. One of my favorite things to do was bring my sketchbook with me and just people watch, and wander the Egyptian and Asian sections of the M.E.T. Chinatown was my spot for my anime fix. Back then (1999-2003), anime (Japanese animation) was nowhere near as popular as it is now, and fans had to wait months, or years for current shows to be imported. I had a favorite shop on Lafayette St., where I'd buy ten to twenty VHS tapes at a clip. I was such a good customer that the shop keepers actually recognized me by face. A perfect day would be spent with my best friends, perusing the Chinatown shops, for anime, posters and memorabilia, then hit Little Italy for some coconut gelato, and take the train home, with my arms full of bags stuffed with all of my finds.
It just so happens, that I was taking a black & white photography course, in the fall of 2001. I had gone to lower Manhattan the Sunday before the attacks, to buy all of my photography supplies. That train ride was the last time I saw the towers standing, in person. Looking back, I'd like to kick myself for not photographing them, but who could've imagined they wouldn't always be there? The following day, my brother and ex-boyfriend flew into Newark airport, on a return trip, from FL and I remember my mom (step-mom) mentioning something about a small fire at the airport, which also felt eerie the following day, when we discovered one of the planes used in the attacks, had departed from Newark (the airport I've used most frequently in my life). Tuesday morning, I was on my normal commute to school, stuck in rush hour traffic, when the woman on Hot 97 (local music station) reported a plane hitting one of the Twin Towers. I distinctly remember thinking, "What moron flies that low, near the city?", assuming it was a small personal plane (in all honesty, I pictured an old fashioned bi-plane). Irregardless, I figured my rap station wasn't the best source for news, and decided to switch to a local news station. When I changed the station, an eyewitness was in mid conversation describing the crash, when he suddenly says, "Oh S**t, another plane just hit the buildings!" The announcer immediately cut the man off and started fumbling around, saying how the station couldn't confirm the man's claims. Within seconds however, the announcer says, that in fact, they had confirmed the eyewitness report with the AP. In that instant, everything changed. It was as if everyone around me, including the announcer (by the tone of his voice), had realized that there was no way that these crashes could be mistakes; these were deliberate attacks. People started pulling over and hopping out of their cars and whipping out cell phones, I imagine, in effort to locate family members, or friends. I continued on my way to school, and met up with a professor, that was my partner for a Freshman course, we were assigned to co-teach that morning. The campus was a bizzar mix of silence and chaos. There were some people still in classrooms, completely unaware of what was going on. In contrast, there were other areas where people were buzzing around, frantically trying to call loved ones, or groups of people, huddled around radios. The professor and I decided to head over to the University Center, where there were several tvs. It was already crowded in the lobby as we entered, and everyone was glued to their spot, looking up at the pictures of the black smoke, billowing out the side of the towers. I can remember thinking, "It'll be ok. They'll evacuate the buildings and be able to repair the damage." Only a few moments after that thought, I watched the first tower come tumbling down. The whole crowd gasped, and people started crying (including me), and hugging strangers. Not long after, the second tower collapsed, and we decided to head back to the office, still in shock.
Naturally, the University announced it would be canceling classes, so the professor and I went to our classroom to inform any students that might show up unaware. The eight o'clock classes were all letting out, and most of those people were learning about the attacks for the first time. Some of our students showed up, and I remember one girl in particular, that was in total distress, because they had closed off the city, and she had no way home and had not been able to reach her family by phone. I offered for her to come stay with me, if she needed too, but she declined. Thankfully, her family was fine, in the end. Back at the office, a good friend of mine, was also in a panic, over his dad, who was also eventually found. I called my boyfriend (at the time), to see if he had heard all that was going on. He worked for the phone company, so I was unsure if he'd had a chance to hear the news (because he was constantly in and out of his van, and various buildings). He was working in Newark at the time, and turns out that he was actually able to witnessed the buildings fall firsthand. It all seemed so surreal. With classes canceled, and work closing (I worked on campus), I decided to track down my best friend. It happened to be her twentieth birthday that day. Once I found her, and her boyfriend, we headed to her house and spent the rest of the day, glued to CNN. I'm sure it's one birthday she'll never forget.
In the weeks that followed, I stopped watching the news. I had begun having nightmares, of the poor people jumping from the burning buildings. I couldn't stomach seeing the images after a few days. Instead, I decided to go around New Jersey, and photograph all the makeshift memorials, that had popped up everywhere. The NJ Historical Society had asked my professor if he would help them document the memorials. Both my professor and I were interviewed byNJN, which is a a local tv station, about our roles in the project. A few of my classmates and I had our photographs displayed at the NJ Historical Society, in Newark, as part of a tribute exhibition. Ironically, the thing I remember most about the exhibit, was not so much the art, as book they had, listing all the victims from New Jersey and their respective towns. I can remember flipping through the pages and thinking about all the families that had been impacted, and how many lived in town I knew. It was a very moving experience.
About a week after the attacks, my stepmother began working with FEMA, as a crisis counselor. She worked under a special grant, named Project Phoenix, that provided free counseling services for victims' families, survivors and all the first responders. They were set up in Jersey City, and would ferry the people back and forth, to allow people to place mementos at the sight, and grieve. My mom can't talk about it much (for confidentiality reasons), but I remember some of the horrific descriptions of the site itself and can only imagine the terribly sad things she witnessed. I was (still am) very proud of her, for the work she did under that grant, which lasted at least a year (I'm a bit fuzzy on details). I'm sure she feels that way too. So many people (myself included) want to help, in a time of crisis, but don't know how, or can't. It's horrible, feeling helpless. The only downside (if you consider it that way), to my mom working at ground zero, is that she is now one of thousands, that has to be concerned (and has been examined for) with health related issues, due to all the toxins that were in the air. I'm sure all the first responders, survivors, and people like my mom, have long lasting emotional, and/or physical reminders of that day.
When I think about 9/11, or my accident, I can't help but still be in shock at how fast life can change. My whole life I've heard people say stuff, like "You never know, I could get hit by a bus tomorrow." However, when you're young and healthy, it's so easy to take life for granted. The unfortunate truth of the matter is, life can change in the blink of an eye; it doesn't matter how young, or healthy you are. Both September 11, 2001 and my accident are proof of that fact. The people that died in those towers were minding their own business, working. I'm sure the great majority woke up that morning, and started the day like any other day, and naturally, had no clue that they would never return home again. Just as, a split second mistake changed my life forever. One minute, I was healthy, happy, on my feet, and the next I was paralyzed, forever dependent on others, and all of my dreams were shattered. Although I didn't die, there is a great part of me that feels missing, and I do mourn over the person I was. In many ways, my life ended the moment I broke my neck; the life I had built, and the plans I had made. In retrospect, I wish I would have savored every moment on my feet. Knowing what I know now, magnifies all of my regrets. Every mistake, moment, or opportunity I didn't take, or missed out, seems intensified, because I know I'll never be able to have a second chance at experiencing them. Once time has passed, you can never get it back.
Some people try to protect themselves from disaster by avoiding life all together. I can remember my parents being wary of me going back into the city, after 9/11, and didn't agree with me traveling overseas in 2003. They were certainly not alone in their fears. Many people to this day, avoid big cities and/or flying, for fear of attack. I don't agree with that mentality, because I think it plays into what terrorists want; for us to stop living. I think living in fear, is the exact opposite of the lessons we should learn from catastrophic, life changing events. That is, that life is temporary, and that no one knows what tomorrow will bring. As cliche as that might sound, it is the truth and there are a million ways that life can change, and catch you completely off guard. Of course, it is important to be cautious, and mindful of the decisions you make, but it is equally important to recognize that there are always going to be factors outside of your control. For those people that are fortunate enough to be healthy and be able to care for themselves, the message, is to really enjoy life, and recognize how lucky you truly are. Once your health is gone, all the "problems" you think you have become secondary. Once you're gone, you're gone, so embrace your health and life, while you have it. Take the time to reflect and be grateful for what matters most, your health and the people you love.
Sunday, September 19, 2010
Tuesday, September 7, 2010
What About Research?
Someone asked me if I've been to the Rutger's Keck Center, here in NJ, in response to my recent blogs. The Keck Center is dedicated to finding a cure to paralysis. Dr. Wise Young is the Founding Director, and holds open house sessions, where he gives updates on their latest research. Dr. Young also pioneered a SCI research program in China, due in part, to all of the restrictions and set-backs in the field, here in the USA. I've been following his work since my accident.
Here is what I wrote, in response to the suggestion to attend Dr. Young's lectures:
I haven't been to the Keck center. I live in Freehold, which is not far from Rutgers, and would really like to go. Every time I've considered it, it somehow falls through. I try to keep up to date with "cure" info through the Care Cure forums & other websites, like the CDRF. I have a lot of respect & gratitude for Dr. Young and other researchers in the field. I'm just at the point where I can't see any practical implications for myself. I'm sure people will not have to suffer from paralysis, some day, and that's certainly worth fighting for. I just don't think that there's much probability that, that "someday" will be anytime soon.
I've always been a planner. I thrived on organization and time management, and owe a lot of success to those skills. In college, I wrote papers weeks before they were due. As a teacher, I would plan out my entire sequence of lessons, for the year, for each grade level (I taught art, grades1-5), in August. In fact, the Friday before my accident, I had been working on lesson plans for an "art night" exhibit that I was planning for what would have been the following year. I still have file folders in my file cabinets, marked "2005, 2006, & 2007" with projected budgets and vacation plans. It's my planning that kept me focus and gave me the peace of mind in always knowing (or so I thought) what was around the next corner. Having control (or the illusion of control) reduced my stress, because I always felt prepared. Unfortunately, it's those rigid, perfectionist type qualities in me, that make is so hard for me to deal with my accident. I went from being a borderline "control freak", to having almost no control over my life, whatsoever. Learning to "go with the flow" has been a tremendous struggle for me. My accident shattered the illusion of control, I thought I had, and opened my eyes to the reality, that all the preparation, planning and effort in the world meant nothing, at the end of the day. Most people can't even begin to grasp the reality of how fragile their lives are, because it such a scary thought. It forces us all to realize how powerless we are, to so many aspects of life.
Not knowing, when, or if I'll ever be cured, is terrifying. The prospect of living like this for decades is unacceptable, to me. It's funny (well, to me, and my warped sense of humor) but, I can remember setting a sort of "time line" for myself, during my stay in Kessler. Ten years, has been the limit, in my mind, since that day. I thought, "I'll try my best to be strong & give myself ten years, to be patient and see what science will bring. If they do find a cure, I'll still be young enough to fulfill my dreams, and if not, I'll have given enough to feel satisfied with my effort." As morbid, or crazy as that time line might seem, it has served as a light at the end of the tunnel for me, and given me something somewhat tangible to deal with. I guess, it's been my way of giving myself the illusion of control over my life, even though, deep down I know anything could happen. Having a limit, gives me a tiny bit of comfort. Although I don't have a specific game plan, for what will happen when I hit that ten year marker, it's just my attempt at creating a goal, that I can focus on. Here I am, at the halfway point, of my illusionarytime line, and I don't feel as though researchers are realistically any closer to curing me, than when I was injured. It makes me feel like there's a very bleak future awaiting me. Without a cure, that means I'm stuck living with what I have now. What I have right now, doesn't seem nearly enough, to want to keep struggling, for any huge length of time. Even the thought of five more years, seems near impossible to me, at the moment. Yet, if I knew 100% that, let's say, on June 1, 2018, at 3:00pm, I'd be up and moving, and caring for myself again, I know I'd have the strength to hang in there. Even the worst criminals get a definitive sentence, and know what to expect of their fate. Right now, as far as I know, I've been given a life sentence. My sentence could potentially be shorter, but no one can give me concrete answers, and the current conditions are horrible.
I realize, I'm looking for answers that no one can give. I know that no advice will solve my dilemma. I don't really know what it is I'm seeking, in terms of help. Honestly, I just want some one to save me, and make this all go away, or for me to wake up, and still have it be the morning of June 4th, 2005. I know that's not going to happen, but I guess, I also want the average person to hear my pain, and stand up and fight for me, and everyone else with paralysis. I want people to open their eyes, and change their priorities (by putting finding cures and alleviating suffering at the top of their lists).
Related links:
1. Keck Center- http://keck.rutgers.edu/center/center.html
2. Just A Dollar Campaign- http://www.adollarplease.org/
Here is what I wrote, in response to the suggestion to attend Dr. Young's lectures:
I haven't been to the Keck center. I live in Freehold, which is not far from Rutgers, and would really like to go. Every time I've considered it, it somehow falls through. I try to keep up to date with "cure" info through the Care Cure forums & other websites, like the CDRF. I have a lot of respect & gratitude for Dr. Young and other researchers in the field. I'm just at the point where I can't see any practical implications for myself. I'm sure people will not have to suffer from paralysis, some day, and that's certainly worth fighting for. I just don't think that there's much probability that, that "someday" will be anytime soon.
I've always been a planner. I thrived on organization and time management, and owe a lot of success to those skills. In college, I wrote papers weeks before they were due. As a teacher, I would plan out my entire sequence of lessons, for the year, for each grade level (I taught art, grades1-5), in August. In fact, the Friday before my accident, I had been working on lesson plans for an "art night" exhibit that I was planning for what would have been the following year. I still have file folders in my file cabinets, marked "2005, 2006, & 2007" with projected budgets and vacation plans. It's my planning that kept me focus and gave me the peace of mind in always knowing (or so I thought) what was around the next corner. Having control (or the illusion of control) reduced my stress, because I always felt prepared. Unfortunately, it's those rigid, perfectionist type qualities in me, that make is so hard for me to deal with my accident. I went from being a borderline "control freak", to having almost no control over my life, whatsoever. Learning to "go with the flow" has been a tremendous struggle for me. My accident shattered the illusion of control, I thought I had, and opened my eyes to the reality, that all the preparation, planning and effort in the world meant nothing, at the end of the day. Most people can't even begin to grasp the reality of how fragile their lives are, because it such a scary thought. It forces us all to realize how powerless we are, to so many aspects of life.
Not knowing, when, or if I'll ever be cured, is terrifying. The prospect of living like this for decades is unacceptable, to me. It's funny (well, to me, and my warped sense of humor) but, I can remember setting a sort of "time line" for myself, during my stay in Kessler. Ten years, has been the limit, in my mind, since that day. I thought, "I'll try my best to be strong & give myself ten years, to be patient and see what science will bring. If they do find a cure, I'll still be young enough to fulfill my dreams, and if not, I'll have given enough to feel satisfied with my effort." As morbid, or crazy as that time line might seem, it has served as a light at the end of the tunnel for me, and given me something somewhat tangible to deal with. I guess, it's been my way of giving myself the illusion of control over my life, even though, deep down I know anything could happen. Having a limit, gives me a tiny bit of comfort. Although I don't have a specific game plan, for what will happen when I hit that ten year marker, it's just my attempt at creating a goal, that I can focus on. Here I am, at the halfway point, of my illusionarytime line, and I don't feel as though researchers are realistically any closer to curing me, than when I was injured. It makes me feel like there's a very bleak future awaiting me. Without a cure, that means I'm stuck living with what I have now. What I have right now, doesn't seem nearly enough, to want to keep struggling, for any huge length of time. Even the thought of five more years, seems near impossible to me, at the moment. Yet, if I knew 100% that, let's say, on June 1, 2018, at 3:00pm, I'd be up and moving, and caring for myself again, I know I'd have the strength to hang in there. Even the worst criminals get a definitive sentence, and know what to expect of their fate. Right now, as far as I know, I've been given a life sentence. My sentence could potentially be shorter, but no one can give me concrete answers, and the current conditions are horrible.
I realize, I'm looking for answers that no one can give. I know that no advice will solve my dilemma. I don't really know what it is I'm seeking, in terms of help. Honestly, I just want some one to save me, and make this all go away, or for me to wake up, and still have it be the morning of June 4th, 2005. I know that's not going to happen, but I guess, I also want the average person to hear my pain, and stand up and fight for me, and everyone else with paralysis. I want people to open their eyes, and change their priorities (by putting finding cures and alleviating suffering at the top of their lists).
Related links:
1. Keck Center- http://keck.rutgers.edu/center/center.html
2. Just A Dollar Campaign- http://www.adollarplease.org/
Sunday, September 5, 2010
Response to Feedback: I'm Not Doing So Good :(
Thank you for your responses to my previous blog ("I'm Not Doing So Good"). My blogs post onto several sites, from Blogger.com so I thought it'd be easiest to post this here, as a separate blog entry. That way I can reply to everyone that left me feedback in one place, versus posting a bunch of separate comments. Besides, I tend to write too much to be accepted in the normal "comment" boxes. >.<
I'm not even sure what I'm looking for, in terms if advice. I realize that words can only do so much. I was forced to see a therapist, when I lived in the nursing facility, and often considered it more of an annoyance, than a help. Partly because, I had an AB (able bodied) person sitting across from me, giving me advice. It was infuriating at times, and I couldn't help but think, "Easy for you to say. You get to punch out and leave all this sadness behind at the end of the day. You get to go home to your normal life and care for yourself. You have the freedom to pick up and do things, as you please and the independence to do things for yourself. How on earth can you even begin to empathize with me, or have the audacity to tell me what I should do!" I've been trying my best to cope with everything, in my own way and rely on medicine to take away some of the overwhelming thoughts, or sadness. Unfortunately, my way doesn't seem to be working anymore and I feel myself sliding down, deeper and deeper into a dark hole.
There are times when I think, "Enough is enough. I've tried my best. It's not fair for other people to expect me to live this way. If my loved ones could (anyone for that matter) live a few days in my shoes, they'd understand and willingly let me go." On the other hand, I feel like giving up would just be another failure. I beat myself for my accident, and already feel as though I've ruined my life. To give up, on top of the mistake of my accident, sometimes makes me feel like I'd be an even bigger disappointment, than I already am (to myself, if no one else).
Then there's the fear of the unknown and what consequences would await me, if I gave up my will to live. I don't have a strong belief in any particular faith, and although I've been actively searching (and praying) for a relationship with God (if he, or she, or they exist), but have yet to find any answers. Faith isn't something anyone else can instill in me; if that were the case, I'd be a devout Catholic. I feel as though a faith in God would give me strength and inner peace, in believing that there really is some bigger purpose, or plan, and some sort of justification, for all of my pain. I think a faith in God would also give me the peace of mind that there's something better waiting for me, when I die. Without a heaven, it seems so pointless to even try. I mean, why prolong my suffering, just to die and go into non-existence? Then again, if there is a heaven, what am sitting around for? Why stay here, if I could be happy on the other side?
These are all questions that no one can answer for me.
The unknown adds a lot of stress, because it leaves me full of doubt, and guilt, over making choices. In a way, my accident drained me of confidence in my ability to make good choices. After five and a half years of suffering with the consequences, of one stupid, split second decision, it terrifies me to think that, giving up could be viewed as the wrong choice. It probably sounds silly, to some, but I'm terrified of screwing up my afterlife (if there is one), as horribly as I've already done with my life. Don't get me wrong, I'm not saying Im a horrible person. Actually, I think I'm a pretty good person. I was a good student, hard worker, law abiding citizen, generous and kind person. However, my accident is proof, to me, that none of that matters, if the mistake you make is bad enough. It's a philosophical/theological dilemma, that only adds to my confusion and stress, about my current situation. The lack of a relationship, or true belief in God, also adds to my overwhelming sense of emptiness, and loneliness. In a way, it feels like the ultimate rejection. Here I am, reading books (of many different ideologies), holy scriptures, praying and begging, with all my heart and soul, and all I get in return is silence and more of the same old stuff.
The unknown of the future is stressful as well. When I first got hurt, I believed strongly in a cure. I was hearing and reading researchers talk about all sorts of promising research. The timespan of "five to ten" years, that I heard countless times, seemed tolerable. I can remember laying in bed, at Kessler rehab, saying to two of my best friends, "Even if it takes a full ten years, I'll only be thirty-five. I'll still be young enough to do everything I want to do." Yet, here we are, five years later, and most of what I've read and heard has been disappointment after disappointment. President Bush vetoed the ESC bill, making research in that field slow to snail's pace. The CDRPA, that could've boosted support for research in many areas of spinel cord injury research, was held up in the Senate for years. Even now, there's a fight to overturn President Obama's support for research. Ironically, some of the most important, promising initiatives to support research for a cure, have been bogged down, by the selfishness and ignorance of only a few individuals. It makes me want to scream, and lash out, for every AB person to hear. I want every AB person to see and feel my pain, and understand why a cure matters. I wish there were a way to have selfish individuals (like the most recent road blocker, Judge Royce Lamberth) experience one week of living with quadriplegia, not to gloat in their suffering, not for revenge, but for understanding. I'm 100% positive that one week (without knowing if, or when a cure would be found) would be enough to inspire anyone to support research. The lack of a cure, or evidence of even a remotely close cure, that I could give me back my independence, has chipped away at my hope over time. I currently, have very little hope left, for any cure that could benefit me, in my lifetime.
My spinal cord injury has given me a perspective on life, that allows me to see the most basic, most important, most valuable aspects of life, that most people take for granted. Unfortunately, the majority of people are blinded by money, power, material possessions, and pride, and have lost the ability to see the obvious order of what their priorities should be; priorities that value the living, improve quality of life and focus on helping others. Either that, or people are so self absorbed, that they can't see the suffering around them, or don't care, until it directly effects their lives. The irony is, anyone can be injured, at anytime. Life can change in the matter of seconds. Just because you are healthy, and on your feet today, is no guarantee that tomorrow you won't be living life in a wheelchair. Finding a cure to paralysis should be among the top priorities for all humanity, not just those of us living with paralysis, at this moment. That's why my message, is almost always aimed at the average AB person. I'm in no way a role model, and have too many struggles, to presume I can give much coping advise to other disabled people. I just want to open AB people's eyes and minds, to what it means to live with paralysis. I'm crying out, "Look at me! Look at what I have to go through everyday. Help me!" I want the average person to look at my situation, and really have it sink in, that I could be anybody; that they could be me.
As far as writing goes, thank you for your compliments. Writing has always been helpful for me. I've kept journals, on and off, since I was eight. I've thought about pursuing bigger writing goals, like writing a book. I've even started working on a book, several times. I tend to hit a wall, when I have to dredge up the really painful stuff, and as time goes on, my memories are getting blurry (regarding details of the first couple of years post accident). Lately, I've been so depressed, that writing itself, has become painful. Having to focus on my thoughts and write them down, has been making me want to switch gears, find distraction and ignore my feelings. Writing my thoughts down forces me to shine a light on a lot of the things I've been trying to avoid thinking about. My iPad has given me some more freedom, to write at various times of the day, so sometimes I can jot down small pieces of what I'm going through. The ability to be more spontaneous helps. I uploaded the Dragon dictation app recently and I'm waiting for a new headset with built in mic to be delivered. Being able to blurt out my thoughts, might help, because it won't take as much effort to type and therefore, give me less excuses to avoid sharing. As embarrassing as it can be sometimes, I feel it is important for me to put myself (through expressing my feelings) out there. I think people are more likely to help, if they can put a face to a problem. I'm not just an example in a book. I'm living, breathing, and feeling, and can give a personal perspective of paralysis, that a medical definition, or diagnosis, fails to give. I'm trying my best, that's all I can do.
I'm not even sure what I'm looking for, in terms if advice. I realize that words can only do so much. I was forced to see a therapist, when I lived in the nursing facility, and often considered it more of an annoyance, than a help. Partly because, I had an AB (able bodied) person sitting across from me, giving me advice. It was infuriating at times, and I couldn't help but think, "Easy for you to say. You get to punch out and leave all this sadness behind at the end of the day. You get to go home to your normal life and care for yourself. You have the freedom to pick up and do things, as you please and the independence to do things for yourself. How on earth can you even begin to empathize with me, or have the audacity to tell me what I should do!" I've been trying my best to cope with everything, in my own way and rely on medicine to take away some of the overwhelming thoughts, or sadness. Unfortunately, my way doesn't seem to be working anymore and I feel myself sliding down, deeper and deeper into a dark hole.
There are times when I think, "Enough is enough. I've tried my best. It's not fair for other people to expect me to live this way. If my loved ones could (anyone for that matter) live a few days in my shoes, they'd understand and willingly let me go." On the other hand, I feel like giving up would just be another failure. I beat myself for my accident, and already feel as though I've ruined my life. To give up, on top of the mistake of my accident, sometimes makes me feel like I'd be an even bigger disappointment, than I already am (to myself, if no one else).
Then there's the fear of the unknown and what consequences would await me, if I gave up my will to live. I don't have a strong belief in any particular faith, and although I've been actively searching (and praying) for a relationship with God (if he, or she, or they exist), but have yet to find any answers. Faith isn't something anyone else can instill in me; if that were the case, I'd be a devout Catholic. I feel as though a faith in God would give me strength and inner peace, in believing that there really is some bigger purpose, or plan, and some sort of justification, for all of my pain. I think a faith in God would also give me the peace of mind that there's something better waiting for me, when I die. Without a heaven, it seems so pointless to even try. I mean, why prolong my suffering, just to die and go into non-existence? Then again, if there is a heaven, what am sitting around for? Why stay here, if I could be happy on the other side?
These are all questions that no one can answer for me.
The unknown adds a lot of stress, because it leaves me full of doubt, and guilt, over making choices. In a way, my accident drained me of confidence in my ability to make good choices. After five and a half years of suffering with the consequences, of one stupid, split second decision, it terrifies me to think that, giving up could be viewed as the wrong choice. It probably sounds silly, to some, but I'm terrified of screwing up my afterlife (if there is one), as horribly as I've already done with my life. Don't get me wrong, I'm not saying Im a horrible person. Actually, I think I'm a pretty good person. I was a good student, hard worker, law abiding citizen, generous and kind person. However, my accident is proof, to me, that none of that matters, if the mistake you make is bad enough. It's a philosophical/theological dilemma, that only adds to my confusion and stress, about my current situation. The lack of a relationship, or true belief in God, also adds to my overwhelming sense of emptiness, and loneliness. In a way, it feels like the ultimate rejection. Here I am, reading books (of many different ideologies), holy scriptures, praying and begging, with all my heart and soul, and all I get in return is silence and more of the same old stuff.
The unknown of the future is stressful as well. When I first got hurt, I believed strongly in a cure. I was hearing and reading researchers talk about all sorts of promising research. The timespan of "five to ten" years, that I heard countless times, seemed tolerable. I can remember laying in bed, at Kessler rehab, saying to two of my best friends, "Even if it takes a full ten years, I'll only be thirty-five. I'll still be young enough to do everything I want to do." Yet, here we are, five years later, and most of what I've read and heard has been disappointment after disappointment. President Bush vetoed the ESC bill, making research in that field slow to snail's pace. The CDRPA, that could've boosted support for research in many areas of spinel cord injury research, was held up in the Senate for years. Even now, there's a fight to overturn President Obama's support for research. Ironically, some of the most important, promising initiatives to support research for a cure, have been bogged down, by the selfishness and ignorance of only a few individuals. It makes me want to scream, and lash out, for every AB person to hear. I want every AB person to see and feel my pain, and understand why a cure matters. I wish there were a way to have selfish individuals (like the most recent road blocker, Judge Royce Lamberth) experience one week of living with quadriplegia, not to gloat in their suffering, not for revenge, but for understanding. I'm 100% positive that one week (without knowing if, or when a cure would be found) would be enough to inspire anyone to support research. The lack of a cure, or evidence of even a remotely close cure, that I could give me back my independence, has chipped away at my hope over time. I currently, have very little hope left, for any cure that could benefit me, in my lifetime.
My spinal cord injury has given me a perspective on life, that allows me to see the most basic, most important, most valuable aspects of life, that most people take for granted. Unfortunately, the majority of people are blinded by money, power, material possessions, and pride, and have lost the ability to see the obvious order of what their priorities should be; priorities that value the living, improve quality of life and focus on helping others. Either that, or people are so self absorbed, that they can't see the suffering around them, or don't care, until it directly effects their lives. The irony is, anyone can be injured, at anytime. Life can change in the matter of seconds. Just because you are healthy, and on your feet today, is no guarantee that tomorrow you won't be living life in a wheelchair. Finding a cure to paralysis should be among the top priorities for all humanity, not just those of us living with paralysis, at this moment. That's why my message, is almost always aimed at the average AB person. I'm in no way a role model, and have too many struggles, to presume I can give much coping advise to other disabled people. I just want to open AB people's eyes and minds, to what it means to live with paralysis. I'm crying out, "Look at me! Look at what I have to go through everyday. Help me!" I want the average person to look at my situation, and really have it sink in, that I could be anybody; that they could be me.
As far as writing goes, thank you for your compliments. Writing has always been helpful for me. I've kept journals, on and off, since I was eight. I've thought about pursuing bigger writing goals, like writing a book. I've even started working on a book, several times. I tend to hit a wall, when I have to dredge up the really painful stuff, and as time goes on, my memories are getting blurry (regarding details of the first couple of years post accident). Lately, I've been so depressed, that writing itself, has become painful. Having to focus on my thoughts and write them down, has been making me want to switch gears, find distraction and ignore my feelings. Writing my thoughts down forces me to shine a light on a lot of the things I've been trying to avoid thinking about. My iPad has given me some more freedom, to write at various times of the day, so sometimes I can jot down small pieces of what I'm going through. The ability to be more spontaneous helps. I uploaded the Dragon dictation app recently and I'm waiting for a new headset with built in mic to be delivered. Being able to blurt out my thoughts, might help, because it won't take as much effort to type and therefore, give me less excuses to avoid sharing. As embarrassing as it can be sometimes, I feel it is important for me to put myself (through expressing my feelings) out there. I think people are more likely to help, if they can put a face to a problem. I'm not just an example in a book. I'm living, breathing, and feeling, and can give a personal perspective of paralysis, that a medical definition, or diagnosis, fails to give. I'm trying my best, that's all I can do.
Saturday, September 4, 2010
Not Doing So Good :(
I haven't been doing too well, for some time now. My physical health hasn't been the greatest, which I'm sure has played its part in my overall decline. As many of you know, from reading my blogs, or living with paralysis yourselves, I have to deal with a certain amount of medical issues, on a weekly basis, that I struggle with, greatly. Even after five years of being injured, I've still yet to come to terms with needing help with personal hygiene & bathroom issues. I've yet to find a way, to "just deal" with having another adult shower me, dress me, and feed me. Worst of all, is the need for a catheter, bowel regime and constant fear of incontinence. They all bother me just as much as they did when I first got hurt. I try my best to block it all out, but instead of getting easier, it's becoming increasingly more difficult. Part of the reason, may be because, as time goes on I've had to deal with more & more related health issues, that are just wearing me down. I've had countless UTIs (despite trying to stay hydrated, taking various medications & attempting to be as sterile as possible), most of which, I've tried to tough out, without antibiotics, because they often render my bowel regime useless, which is ultimately more upsetting&can cause skin breakdown. There are times though, when I'm just too sick to ignore and either land myself in the hospital, or force me to breakdown and ask for an antibiotic. Even that is a hassle, because half the time, the laboratories kick back my specimen, without culturing it, because they think it's contaminated. Apparently, I live with a pretty outrageous amount of bugs in my system, because even though we explain it's from a catheter, I've had more than one lab reject my samples. So then, I'm stuck with taking an antibiotic that may, or may not clear up the infection, and the wonderful stress, of worrying about accidents. This is all on top of the dozen or so pills I take on a daily basis, just to stay somewhat functioning (mostly bowel & bladder related, with a couple anti-depressant, anti-anxiety meds).
Yesterday, I spent all day at the hospital for a UTI. I just took an antibiotic called Leviquin, about three weeks ago, that obviously didn't work. They took blood & urine, gave me a ridiculously strong IV antibiotic& a prescription. I was in the ER for about seven hours (two of which, were just spent waiting for an ambulance ride back to my apartment). The whole time, I'm trying my best not to freak out, or have a panic attack, because my absolute worst fears & experiences all revolve around the hospital. I spent the first year & a half, after my accident living in Robert Wood Johnson ICU, Kessler rehab, ST. Barnabas ICU, Cheshire nursing home, Morristown Memorial hospital and then back to the nursing home. Despite having daily visitors, most of the time, the large majority (mostly at night) was spent painfully, and terrifyingly, alone. I can't even begin to describe the loneliness, fear and sadness that I experienced, most nights. At times, I was literally at the brink of death, most times, just overwhelmed with loss and fear. I doubt anyone, has pleasant hospital memories, however, being hospitalized and totally paralyzed, feels like hell on earth. You are 100% at the mercy of the hospital staff, especially when you can't even hit a call bell, reposition yourself, get a drink, change the tv channel, work the bed controls, pick up the phone, or any other small comfort, that the average person can do. Plus, thanks to HIPA, I end up having to re-explain that I'm paralyzed, almost every time someone besides my nurse, or doctor enters the room. Honestly, I rather have staff read my chart, than have to explain why I can't make a fist, or raise my arm, or any other stupid thing. Even when I have family, or friends with me, I feel scared and lonely. I just want to be home, and I'm dreading the time when they'll have to inevitably leave me behind. The few times people stayed overnight with me, I still knew they'd eventually have to leave. Plus, I felt horrible, because I knew how uncomfortable & exhausted they must have been, trying to comfort me. As crazy as it might seem, I couldn't even watch a tv show or movie about the hospital, without feeling panicked. Although, thankfully, I haven't had to stay over night in the hospital, since I've been home, the fear is always there. Horribly, in the end, with or without visitors, I often still feel alone.
Short of having a person climb into bed with me, it's hard for me not feel alone. I can't feel people holding my hand. I can't feel much of anything. Other people with paralysis and therapists have said stuff like,"You can still feel your head, neck and shoulders.You can learn to substitue affection to the areas you can feel" and/or "intimacy is mostly in the mind." For me, paralysis has been extremely isolating and I feel extremely deprived. Not only do I feel emotionally cut off (because most people have no clue what it's like), but physically, alone. I so often, feel like I just want to be held and be able to embrace the person back. Not that a hug would really solve anything, I feel such a void in my life. A big part of that emptiness, is not having a signifigant other. Family and friends can only do so much, and although I love them and am tremendously thankful for the people in my life, there is ahuge, gaping emptiness inside of me. I miss having that other half, to hold me and make me feel safe. It's a different type of love and affection, and it's been lacking in my life for a very long time now. Sometimes, I feel as though, I'd be stronger and feel as though I would have more purpose, if I had a husband in my life. At the end of the day, my friends& family, all have their own lives, and I feel completely lost and empty. Part of my problem, is that I honestly still love my ex (the person I was with, when I was hurt) and our break-up isn't something I've been able to get past. Mostly because, we both feel like we'd be together, if I were never hurt. All my dreams were ripped out from underneath me overnight, and being with him was one of those dreams. The events that followed my accident, made it impossible for our relationship to work, and although I have no way of knowing how my life (or our relationship) would've turned out, up until this point, the abruptness of how it all ended, makes it unbearably difficult to move forward.
As unbearable as it's been without him, I'm full of doubts within myself as well. I don't know that I'd have been able to be there for him, if our situations were reversed, and that's an ugly reality, I didn't want to admit to myself. You think that love should be enough, but the reality is, that each case is unique and you really can't judge anyone, unless you've been in their shoes. Part of me feels like, if he truly loved me, we'd somehow be together. Another part of me says, I'm not sure how I'd handle it myself (in his shoes or even now, in my position). I don't really know how I'd deal with having a romantic relationship, on top of all of this. There's so much of my life, I'd want to shield, or hide, that I couldn't. I only know what I had, and recognize, it wouldn't be the same. Regardless of who I'd be with, the thought of letting anyone into my life in that way, both terrifies me and leaves me feeling very skeptical. Why would anyone want to willingly choose, to take on all the hardships that come along with my life? I'm trying so hard to run away from them myself, so why would anyone welcome them? Plus, there's my overwhelming sense of guilt, that I could never contribute even a fraction of what that person could. Also, there's my want to be with someone that's able bodied, because otherwise, I feel as though, it's just another friendship. How can I expect someone else to want something I don't even want for myself? Part of me feels like a bad person, for not being able to see past all the physical, but it's so much of the physical, nurturing aspect of a relationship, that I feel so lacking and that I miss.
My failed relationship with my ex, is just one of many hugely important goals/dreams that I've struggled with since my accident. There's the career I worked so hard for, achieved, then lost. Then, there's the dreams of marriage and children, I've had since I was a little girl; on top of ordinary goals, like owning a home, playing an active role in helping family & friends and common milestones. For the past five and a half years, I've been watching all of my friends accomplish the things I thought I'd have (and still desperately want). Every day, I see painful reminders of what I could've had, but ruined. It's not to say, I absolutely couldn't teach, get married, or even have children, in my condition. What most people fail to see, or understand, is that the aspects of' those dreams that I most looked forward to experiencing, would be gone. I can no longer do most of my favorite parts of my job, which include, the physical interaction with the materials, the hands on working & demonstration with the kids and the physical tasks of organizing, showing, managing and doing. Yes, the ideas are still there, but so much of what I loved, was making those ideas into reality. It's the kinesthetic, tactile sensations that I love most about art, and most of that is gone. Marriage and children, come with a ton of experiences that I'd completely miss out on. It kills me, to think I'll most likely never experience most of the things I've dreamed of my entire life. The compromises just seem so pale in comparison. I've looked forward to all the traditions of marriage, not just the piece of paper. I want to go try on wedding dresses in front of a million full length mirrors, WALK down the isle arm & arm with my dad, dance my wedding song with my husband, be carried through the threshold the night of my wedding, and make tons of love on my honeymoon. I've been dreaming, and wondering ever since I was a little girl, what it'd be like to be pregnant, feel my baby growing inside of me, having my husband rub my belly, decorate the nursery, go into labor, hold my baby in my arms, and breast feed. If I had a child, I looked forward to bathing it, feeding it, dressing it, rocking it to sleep and keeping it safe. I don't know that I could handle all the compromises and being a spectator. It breaks my heart, just thinking about it.
I've been struggling with all of these issues, since day one (June, 5, 2005). Instead of getting easier to cope, it's gotten harder and harder. Every year that passes, seems like a year lost, a dream gone forever. Every day that passes without a breakthrough, or a cure, it seems less hopeful. Every politician's decision or governmental set back to funding, seems like a punch to my face, like a personal attack. When people fight over research, it makes me feel so insignificant and worthless. How can people value cells, already predestined for the trash, more than me; a living, breathing, suffering, citizen? Why is there hardly any money or time to find a way to repair the spinal cord, but plenty of time and money, for war and exploration of other planets? Why is it ok for me to have to live this way? Why do so many people do foolish things, and/or even mean, horrible things, but get to spend full, healthy lives? It's getting to feel to be too much, too overwhelming, more hopeless, emptier, unbearable.
I've talked to my doctor about changing my anti-depressant medication, in hopes of helping me regain some ability to cope. I'm at the point where I feel as though nothing is taking off the edge, nothing is distracting enough. I feel awful, sad, lost, scared and lonely. I know I have people around me that worry,care about me and support me. Nothing is enough, and I feel helpless and horrible and don't want to feel this way. I'm skeptical of how much difference a pill will make, or even what talking about it can do. Nothing, short of fixing my spine can really serve as a solution, but I feel as though I've hit a wall. I feel worn out and at a loss for how to keep going forward, by just continuing what I've been doing up until now. I feel as though, I'm quickly unraveling, and it terrifies me. Asking for help scares me, but saying nothing scares me more. It's especially hard finding (or believing) anyone that really understands what I've beenthrough and what I'm going through. Many of my disabled friends/acquaintances are men, and I feel lack the ability to truly understand my perspective. I'm always concerned my honesty will upset the people that love me, and therefore hold a lot back. I'm at a point, where I feel I must speak up, to keep what sanity I have left. I don't even know how anyone can really help me. I know part of me, should just force myself to go forward, and do things, despite my lack of drive, or desire, but then I start to wonder who I'm really forcing myself for. Do I really want it for myself, deep down, or do I just not want to further disappoint myself & loved ones; but at what cost? My mind is currently just a chaotic mess of mixed emotions, sadness, frustration and fear and I'm desperate for some real solutions, if there are any.
Yesterday, I spent all day at the hospital for a UTI. I just took an antibiotic called Leviquin, about three weeks ago, that obviously didn't work. They took blood & urine, gave me a ridiculously strong IV antibiotic& a prescription. I was in the ER for about seven hours (two of which, were just spent waiting for an ambulance ride back to my apartment). The whole time, I'm trying my best not to freak out, or have a panic attack, because my absolute worst fears & experiences all revolve around the hospital. I spent the first year & a half, after my accident living in Robert Wood Johnson ICU, Kessler rehab, ST. Barnabas ICU, Cheshire nursing home, Morristown Memorial hospital and then back to the nursing home. Despite having daily visitors, most of the time, the large majority (mostly at night) was spent painfully, and terrifyingly, alone. I can't even begin to describe the loneliness, fear and sadness that I experienced, most nights. At times, I was literally at the brink of death, most times, just overwhelmed with loss and fear. I doubt anyone, has pleasant hospital memories, however, being hospitalized and totally paralyzed, feels like hell on earth. You are 100% at the mercy of the hospital staff, especially when you can't even hit a call bell, reposition yourself, get a drink, change the tv channel, work the bed controls, pick up the phone, or any other small comfort, that the average person can do. Plus, thanks to HIPA, I end up having to re-explain that I'm paralyzed, almost every time someone besides my nurse, or doctor enters the room. Honestly, I rather have staff read my chart, than have to explain why I can't make a fist, or raise my arm, or any other stupid thing. Even when I have family, or friends with me, I feel scared and lonely. I just want to be home, and I'm dreading the time when they'll have to inevitably leave me behind. The few times people stayed overnight with me, I still knew they'd eventually have to leave. Plus, I felt horrible, because I knew how uncomfortable & exhausted they must have been, trying to comfort me. As crazy as it might seem, I couldn't even watch a tv show or movie about the hospital, without feeling panicked. Although, thankfully, I haven't had to stay over night in the hospital, since I've been home, the fear is always there. Horribly, in the end, with or without visitors, I often still feel alone.
Short of having a person climb into bed with me, it's hard for me not feel alone. I can't feel people holding my hand. I can't feel much of anything. Other people with paralysis and therapists have said stuff like,"You can still feel your head, neck and shoulders.You can learn to substitue affection to the areas you can feel" and/or "intimacy is mostly in the mind." For me, paralysis has been extremely isolating and I feel extremely deprived. Not only do I feel emotionally cut off (because most people have no clue what it's like), but physically, alone. I so often, feel like I just want to be held and be able to embrace the person back. Not that a hug would really solve anything, I feel such a void in my life. A big part of that emptiness, is not having a signifigant other. Family and friends can only do so much, and although I love them and am tremendously thankful for the people in my life, there is ahuge, gaping emptiness inside of me. I miss having that other half, to hold me and make me feel safe. It's a different type of love and affection, and it's been lacking in my life for a very long time now. Sometimes, I feel as though, I'd be stronger and feel as though I would have more purpose, if I had a husband in my life. At the end of the day, my friends& family, all have their own lives, and I feel completely lost and empty. Part of my problem, is that I honestly still love my ex (the person I was with, when I was hurt) and our break-up isn't something I've been able to get past. Mostly because, we both feel like we'd be together, if I were never hurt. All my dreams were ripped out from underneath me overnight, and being with him was one of those dreams. The events that followed my accident, made it impossible for our relationship to work, and although I have no way of knowing how my life (or our relationship) would've turned out, up until this point, the abruptness of how it all ended, makes it unbearably difficult to move forward.
As unbearable as it's been without him, I'm full of doubts within myself as well. I don't know that I'd have been able to be there for him, if our situations were reversed, and that's an ugly reality, I didn't want to admit to myself. You think that love should be enough, but the reality is, that each case is unique and you really can't judge anyone, unless you've been in their shoes. Part of me feels like, if he truly loved me, we'd somehow be together. Another part of me says, I'm not sure how I'd handle it myself (in his shoes or even now, in my position). I don't really know how I'd deal with having a romantic relationship, on top of all of this. There's so much of my life, I'd want to shield, or hide, that I couldn't. I only know what I had, and recognize, it wouldn't be the same. Regardless of who I'd be with, the thought of letting anyone into my life in that way, both terrifies me and leaves me feeling very skeptical. Why would anyone want to willingly choose, to take on all the hardships that come along with my life? I'm trying so hard to run away from them myself, so why would anyone welcome them? Plus, there's my overwhelming sense of guilt, that I could never contribute even a fraction of what that person could. Also, there's my want to be with someone that's able bodied, because otherwise, I feel as though, it's just another friendship. How can I expect someone else to want something I don't even want for myself? Part of me feels like a bad person, for not being able to see past all the physical, but it's so much of the physical, nurturing aspect of a relationship, that I feel so lacking and that I miss.
My failed relationship with my ex, is just one of many hugely important goals/dreams that I've struggled with since my accident. There's the career I worked so hard for, achieved, then lost. Then, there's the dreams of marriage and children, I've had since I was a little girl; on top of ordinary goals, like owning a home, playing an active role in helping family & friends and common milestones. For the past five and a half years, I've been watching all of my friends accomplish the things I thought I'd have (and still desperately want). Every day, I see painful reminders of what I could've had, but ruined. It's not to say, I absolutely couldn't teach, get married, or even have children, in my condition. What most people fail to see, or understand, is that the aspects of' those dreams that I most looked forward to experiencing, would be gone. I can no longer do most of my favorite parts of my job, which include, the physical interaction with the materials, the hands on working & demonstration with the kids and the physical tasks of organizing, showing, managing and doing. Yes, the ideas are still there, but so much of what I loved, was making those ideas into reality. It's the kinesthetic, tactile sensations that I love most about art, and most of that is gone. Marriage and children, come with a ton of experiences that I'd completely miss out on. It kills me, to think I'll most likely never experience most of the things I've dreamed of my entire life. The compromises just seem so pale in comparison. I've looked forward to all the traditions of marriage, not just the piece of paper. I want to go try on wedding dresses in front of a million full length mirrors, WALK down the isle arm & arm with my dad, dance my wedding song with my husband, be carried through the threshold the night of my wedding, and make tons of love on my honeymoon. I've been dreaming, and wondering ever since I was a little girl, what it'd be like to be pregnant, feel my baby growing inside of me, having my husband rub my belly, decorate the nursery, go into labor, hold my baby in my arms, and breast feed. If I had a child, I looked forward to bathing it, feeding it, dressing it, rocking it to sleep and keeping it safe. I don't know that I could handle all the compromises and being a spectator. It breaks my heart, just thinking about it.
I've been struggling with all of these issues, since day one (June, 5, 2005). Instead of getting easier to cope, it's gotten harder and harder. Every year that passes, seems like a year lost, a dream gone forever. Every day that passes without a breakthrough, or a cure, it seems less hopeful. Every politician's decision or governmental set back to funding, seems like a punch to my face, like a personal attack. When people fight over research, it makes me feel so insignificant and worthless. How can people value cells, already predestined for the trash, more than me; a living, breathing, suffering, citizen? Why is there hardly any money or time to find a way to repair the spinal cord, but plenty of time and money, for war and exploration of other planets? Why is it ok for me to have to live this way? Why do so many people do foolish things, and/or even mean, horrible things, but get to spend full, healthy lives? It's getting to feel to be too much, too overwhelming, more hopeless, emptier, unbearable.
I've talked to my doctor about changing my anti-depressant medication, in hopes of helping me regain some ability to cope. I'm at the point where I feel as though nothing is taking off the edge, nothing is distracting enough. I feel awful, sad, lost, scared and lonely. I know I have people around me that worry,care about me and support me. Nothing is enough, and I feel helpless and horrible and don't want to feel this way. I'm skeptical of how much difference a pill will make, or even what talking about it can do. Nothing, short of fixing my spine can really serve as a solution, but I feel as though I've hit a wall. I feel worn out and at a loss for how to keep going forward, by just continuing what I've been doing up until now. I feel as though, I'm quickly unraveling, and it terrifies me. Asking for help scares me, but saying nothing scares me more. It's especially hard finding (or believing) anyone that really understands what I've beenthrough and what I'm going through. Many of my disabled friends/acquaintances are men, and I feel lack the ability to truly understand my perspective. I'm always concerned my honesty will upset the people that love me, and therefore hold a lot back. I'm at a point, where I feel I must speak up, to keep what sanity I have left. I don't even know how anyone can really help me. I know part of me, should just force myself to go forward, and do things, despite my lack of drive, or desire, but then I start to wonder who I'm really forcing myself for. Do I really want it for myself, deep down, or do I just not want to further disappoint myself & loved ones; but at what cost? My mind is currently just a chaotic mess of mixed emotions, sadness, frustration and fear and I'm desperate for some real solutions, if there are any.
Wednesday, August 18, 2010
Why all the hate?
I'm getting tired of seeing people post stuff about the proposed mosque that is planned to be built near ground zero. I've seen almost nothing but negative criticism and felt I wanted to add my two cents.
Not all Muslims are terrorists. Yes, it is a fact that radical Muslims were responsible for 9/11. However, radical Muslims do not represent all Muslims. Muslims, Jews and Christians all share the teachings of the Old Testament and preach the same core beliefs. There are bad people in every group. Human beings are flawed, and prone to violence regardless of religious ideology. Religion is a powerful motivator and has been the scape goat of horrible atrocities throughout history. The Romans persecuted the Christians, Egyptians persecuted the Israelites, Christians persecuted the Jews, Christians fight Christians (Catholics & Protestants), it goes on and on. I find it shocking how many people have become biased towards Muslims since 9/11. I judged people on an individual basis before 9/11, and continue to do the same.
My Christian friends (I was raised Catholic. I'm not atheist, just currently undecided) have been the most opposed and vocal to building the mosque. Yet, no one seems to remember (or wants to point out) how many people have been killed in the name of Christianity. Do the Crusades, the explorers or the Conquistadors ring a bell? Not to mention, most of the Nazis were Christian. They killed a lot more than 3,000 people, so does that mean we should stop building churches, so as not to offend anyone? Is it disrespectful to Native Americans or Holocaust survivors to build churches in their neighborhoods? Lots of contemporary murders are Christian, but you don't hear people calling Christians terrorists or treating them suspiciously. I really don't understand the double standard. The whole triumphalist attitude of organized religions is what pisses me off and makes it hard for me to believe in any one faith. I don't think I'll ever buy into the belief that good people will suffer eternal damnation, just because they called God by the wrong name. Every religious person thinks their belief is the right one, but that's no reason to stop others from practicing their faith. Our country was founded on religious freedom. The mosque is set to be built on private property, so the government should not have the constitutional right to oppose it.
I think it's horrible that "Muslim" has come to mean "terrorist" to so many people. Calling all Muslims terrorists is unfair and no different than being anti-Semitic; bigotry is bigotry no matter how you slice it. It is unfair to lump good Muslim people in with extremists and radical ideology. Prejudice is ignorance, bottom line. The facts are: 1-all religions can be (and have been) perverted & miss used, 2-government & religion are separate, 3-NYC is one of the most diverse places in the world & all citizens should be free to worship without discrimination, 4-the people responsible for taking those planes down died that day, it's not right to punish an entire religious community for their crimes. The truth of the matter is, dozens of upstanding Muslim American citizens were also killed in the 9/11 attacks. Why has everyone forgotten them? The Muslim citizens in those buildings were innocent people, working and contributing to our society; they were not terrorists. The men that hijacked those planes were terrorists. Al-Qaeda are extremists and they have killed more Muslims, than any other religious group*.
I just wish people could be more objective in their opinions and examine their own beliefs before judging others. Give people a chance to be good, instead of assuming they're evil. Didn't someone say something like, "He who is without sin can cast the first stone"?
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Saturday, August 7, 2010
Sick of Being Sick
I've been fighting cold sweats, fever and overall discomfort for a couple of weeks now. I finally decided to bite the bullet and take an antibiotic. I try to avoid them, as they almost always reek havoc with my stomach. On top of that, I'm waking up every couple of hours from the time I try to fall asleep, to the time I have to wake up. I haven't even been able to take a nap lately. I'm no stranger to insomnia, it's just that I'm more accustom to having racing thoughts keep me awake, which I try my best to turn off. Recently though it's more discomfort waking me up than anything else. It's especially annoying not being able to toss, turn or reposition myself. As it is, I've had to adjust to sleeping on my back, something I never did before my accident. I can honestly say, I haven't slept longer than four hours straight since I was on my feet and eventually, it always catches up with me.
Living in hospitals, rehab and the nursing home was the worst, because it was frightening being paralyzed and on my own (no family or friends with me) at night. Not to mention, perpetually noisy. I had zero control over the schedule or the waves of medical staff that constantly came and went. Living in my own apartment has helped to decrease my nighttime stress and there's certainly less noise. All in all, I still wake up tired most mornings. Part of the problem is the fact that I can't move, like the average person. Although I don't always feel uncomfortable, my body reacts to being in one position for too long and causes my legs to spasm, or I get sweaty or I get a weird tingly sensation, which eventually wakes me up. Either that, or I get too cold, or too hot, or my hair bothers me. Naturally, I need help to get repositioned. Sometimes it takes a few minutes for someone to hear me (especially if they're sleeping) and I end up being wide awake by the time the person leaves my room. At the nursing home, it was procedure to get turned every two hours (I felt like a rotisserie chicken half the time). I'd be lucky if I could fall back asleep before the aides would come again and cycle continued on and on, every night. Despite all my efforts (medication, meditation, white noise, etc.) of battling my insomnia, it's an on going issue.
Being over tired often sets the tone for my day. There's many days that my lack of sleep seems to zap me of all motivation. The first few years post accident, I got up in my wheelchair every day (regardless of how I felt, partly because I had no choice in the facilities). Ever since I got a bedsore on my upper thigh in 2008, sitting up has become hit or miss. Sometimes I feel fine and other times I feel like I can't get back into bed or lay down fast enough. It makes me not want to get out of bed at all. For the past six months (give or take) I've been staying in bed 5-6 days per week. My nurses, aides & family sometimes get annoyed with me constantly being in bed, because they worry about my overall physical and mental well being. I understand that it's good for my body to sit in my chair, for blood flow, digestion and breathing. However, I'm already forced to sit up for two to three hours on the days my nurse comes, so on those days, I'm ready to lay down once they leave. I don't see the point in going through the hassle of getting fully dressed and transferred into my chair, only to want to reverse the process an hour later. It's just not worth it to me.
Ironically, I probably sit up the same amount of time in my bed as the days I get up into my chair. The difference is, I can lie down when ever I want, in bed. If I'm in my chair, I need to be transferred and partially undressed. My catheter bags also need to be switched and cleaned. Given the hassle and the fact that my aides come at set times, getting up just becomes less appealing, especially if I'm already tired, or feeling sick. On top of all that, the only thing I can't do in bed is paint. The list of activities I can do on my own is pretty slim, so most days it doesn't really matter if I'm sitting in a bed, or a chair. I can even do most things while laying down: watch tv, read, talk on the phone, use my iPad, control my PC by mouse & play Nintendo DS.
I could understand concern if I was completely lethargic and apathetic and spent my entire days sleeping or being zoned out. To me, that's giving up and it's not the case with me. Most people just fail to consider that there's still a big portion of my day that is out of my control and spent doing things I'd rather not be doing. I can't do things on a whim, or instantaneously, because I'm always relying on someone else to assist me. On top of that, there's activities of daily life (ADLs) that are simple to a healthy person, but have become stressful and traumatic for me. Gong to the bathroom is the number one stressor in my life. I don't even usually discuss it in any detail, out of embarrassment and shame. Unfortunately, I have no choice in the matter. I have to eat, therefore I have to go the bathroom. Something that should be a personal, private matter, now practically dictates my schedule and involves several people.
Most people probably don't even consider how paralysis (high level injuries and severe degenerative diseases) can effect every tiny detail of someone's life. I think it's too disturbing, or sad for some people to even want to know. Then there's the people who could care less, because it has no impact on their lives. The truth is, anyone could be in my shoes. It took less than a minute for my life to change, forever. It frustrates me that most people don't see how lucky they are, just to be able to care for themselves. Things that were once second nature to me, like brushing my teeth, taking a shower or going to the bathroom, have become things I dread.
I cringe every other night, because I know the nurse is coming the next morning. Having to have a permanent catheter is bad enough, but needing a bowel regimen makes me want to disappear into the floor and never eat again. It's not something that's easy to empathize with, because most people don't even know what a bowel regimen (or bowel program) is and because the normal person has sensation. It can't be that bad right? Yes. Yes, it can. For starters, just the fact that another human being has to assist me with something I had been doing solo since I was probably three years old, is stressful. It's not an aspect of life I've ever been comfortable with, and now my feelings of embarrassment and stress are off the charts. Secondly, I can't feel any part of the process. I feel no urge to go, no indication that I've gone and no relief or comfort in having gone. A nurse has to essentially, manually stimulate my body to go and then continue to check inside to see if it's worked. I'm usually physically uncomfortable the entire time, because it forces my blood pressure to rise and the commode is not very comfortable. The whole ordeal can take up to two hours, and I have to go through it every other day. It's also very emotionally draining for me. Just imagine having a stranger (at first. I have several nurses that I've gotten to know over time) sit with you in the bathroom while you go, and then clean your bottom for you. It's horrific, even though that scenario doesn't cover the full extent of the regimen.
Even with a bowel regimen, there's always the wonderful anxiety that comes with being incontinent, and never knowing when or if my body may decide to "go" for no reason at all. Having to wear Depends in your twenties and thirties, is not an easy pill to swallow. Having the fear of an accident is on my mind every day, and especially if I have plans to go out or have people over. The threat of it happening is very real and often completely unpredictable. I try to avoid know causes, like antibiotics, but there have been many, many days where I've needed to cancel plans last minute. Either for fear of incontinence, or feeling ill if things don't go smoothly. I try my best to ignore it all when it's going on, but I'm never that successful. After that, I have my shower. Yay. Yet another person to see me naked and have to wash (aka touch) every inch of me. Then it's all topped off with having someone else brush my teeth, hair and feed me breakfast (like an infant). It's exhausting. Unfortunately, it hasn't gotten any easier over time, for me to deal with most of the daily ADLs.
I almost never discuss my personal care with people other than nurses, aides and a handful of friends and family. I'm writing about it today, because I'm just so fed up. I feel like people should know EVERY aspect of living with paralysis. Sometimes I feel like going outside to find a random huge crowd of people and start shouting through a megaphone all of the stuff I deal with, everyday. It also makes it hard for me to be sympathetic to most people (healthy), because their "problems" all seem so trivial and stupid to me. I'd welcome most things people complaint about, in exchange for being able to care for myself. I get so angry and upset, because people expect me to live like this and either have no clue what my (or other people in my situation) life is really like, or if they do know (medical professionals), they still have no cure, or solution. "Just deal with it, and move on."
The worst is when people tell me, "well, at least you're still alive." Yeah. Great! It's not exactly easy to just forget twenty four years of a "normal" life and just be content with living, for the sake of being alive. The fact of the matter is, I'm left with few choices. If I want to "move on" with my life, it means having to deal with ALL the stressors, every second of the day. It means acknowledging the fact that I'll be chronically tired, often sick (UTIs are very common with catheters, despite how clean you are), have instances of incontinence, reliant on medication, need assistance from others, be susceptible to skin break down, be at risk of dying from respiratory infections, weakening bones, and inevitably have to do things that make me very uncomfortable (for my own health and cleanliness). It's my life. Take it or leave it. I don't get a breather. I can't remove myself from the situation. There will be many days that I'm sad, ill, or don't want to bothered with anyone, or anything that's not absolutely necessary. I can't understand why or how people still expect more.
Just because I'm feeling ill or tired, or just don't want to get out of bed, doesn't mean I'm giving up. Although I might not be as busy as I was the first two years I've lived in my apartment (2007-2009), I still try my best to be productive. I'm still painting, albeit much less frequently. However, I've continued to look for ways to share my artwork and have been exploring digital art. I work on my website from time to time and try to post at least two blogs per month. On top of that, I'm always networking and hunting for ways to help advocate for a cure. My intentions are always to raise awareness. I don't strive to be an inspiration or motivator for other disabled people. Other people with disabilities (paralysis specifically) already know what it's like to deal with my day to day struggles. Either that, or they were born disabled and have a totally different perspective.
I can't speak for anyone else, but I can educate people on the facts and use my life as an example. I don't expect other people to cope the way I do. Every person has their own story. Every person that's had a spinal cord injury goes through a unique experience. Your lifestyle, age and health all factor into how much loss you have to face. Each injury is unique. My goal is solely to educate the general public about paralysis and open people's eyes to what it takes to keep moving forward and all the obstacles that come along with paralysis. No one should have to live with paralysis and I feel it's important that people understand why we so desperately need a cure.
Personally, I'm at a point in my life (and my injury) where I have a tiny glimmer of hope left for a cure(that I'll be able to benefit from), but live each day at a time. In my mind, I'll be paralyzed until I die. If a cure is found, that'll be fantastic, but I have to face the reality of the present. I can't plan my life around "someday", "might", or "if." The truth of the matter is that, most days I don't feel motivated. Many days seem overwhelming. I'm sick of being sick. It's incredibly hard having a chronic condition. There are certain things that are inevitable and at times it's hard to face the day, because I know what's coming. It's never easy, but I try my best. I think that's good enough.
Sent from my iPad
Living in hospitals, rehab and the nursing home was the worst, because it was frightening being paralyzed and on my own (no family or friends with me) at night. Not to mention, perpetually noisy. I had zero control over the schedule or the waves of medical staff that constantly came and went. Living in my own apartment has helped to decrease my nighttime stress and there's certainly less noise. All in all, I still wake up tired most mornings. Part of the problem is the fact that I can't move, like the average person. Although I don't always feel uncomfortable, my body reacts to being in one position for too long and causes my legs to spasm, or I get sweaty or I get a weird tingly sensation, which eventually wakes me up. Either that, or I get too cold, or too hot, or my hair bothers me. Naturally, I need help to get repositioned. Sometimes it takes a few minutes for someone to hear me (especially if they're sleeping) and I end up being wide awake by the time the person leaves my room. At the nursing home, it was procedure to get turned every two hours (I felt like a rotisserie chicken half the time). I'd be lucky if I could fall back asleep before the aides would come again and cycle continued on and on, every night. Despite all my efforts (medication, meditation, white noise, etc.) of battling my insomnia, it's an on going issue.
Being over tired often sets the tone for my day. There's many days that my lack of sleep seems to zap me of all motivation. The first few years post accident, I got up in my wheelchair every day (regardless of how I felt, partly because I had no choice in the facilities). Ever since I got a bedsore on my upper thigh in 2008, sitting up has become hit or miss. Sometimes I feel fine and other times I feel like I can't get back into bed or lay down fast enough. It makes me not want to get out of bed at all. For the past six months (give or take) I've been staying in bed 5-6 days per week. My nurses, aides & family sometimes get annoyed with me constantly being in bed, because they worry about my overall physical and mental well being. I understand that it's good for my body to sit in my chair, for blood flow, digestion and breathing. However, I'm already forced to sit up for two to three hours on the days my nurse comes, so on those days, I'm ready to lay down once they leave. I don't see the point in going through the hassle of getting fully dressed and transferred into my chair, only to want to reverse the process an hour later. It's just not worth it to me.
Ironically, I probably sit up the same amount of time in my bed as the days I get up into my chair. The difference is, I can lie down when ever I want, in bed. If I'm in my chair, I need to be transferred and partially undressed. My catheter bags also need to be switched and cleaned. Given the hassle and the fact that my aides come at set times, getting up just becomes less appealing, especially if I'm already tired, or feeling sick. On top of all that, the only thing I can't do in bed is paint. The list of activities I can do on my own is pretty slim, so most days it doesn't really matter if I'm sitting in a bed, or a chair. I can even do most things while laying down: watch tv, read, talk on the phone, use my iPad, control my PC by mouse & play Nintendo DS.
I could understand concern if I was completely lethargic and apathetic and spent my entire days sleeping or being zoned out. To me, that's giving up and it's not the case with me. Most people just fail to consider that there's still a big portion of my day that is out of my control and spent doing things I'd rather not be doing. I can't do things on a whim, or instantaneously, because I'm always relying on someone else to assist me. On top of that, there's activities of daily life (ADLs) that are simple to a healthy person, but have become stressful and traumatic for me. Gong to the bathroom is the number one stressor in my life. I don't even usually discuss it in any detail, out of embarrassment and shame. Unfortunately, I have no choice in the matter. I have to eat, therefore I have to go the bathroom. Something that should be a personal, private matter, now practically dictates my schedule and involves several people.
Most people probably don't even consider how paralysis (high level injuries and severe degenerative diseases) can effect every tiny detail of someone's life. I think it's too disturbing, or sad for some people to even want to know. Then there's the people who could care less, because it has no impact on their lives. The truth is, anyone could be in my shoes. It took less than a minute for my life to change, forever. It frustrates me that most people don't see how lucky they are, just to be able to care for themselves. Things that were once second nature to me, like brushing my teeth, taking a shower or going to the bathroom, have become things I dread.
I cringe every other night, because I know the nurse is coming the next morning. Having to have a permanent catheter is bad enough, but needing a bowel regimen makes me want to disappear into the floor and never eat again. It's not something that's easy to empathize with, because most people don't even know what a bowel regimen (or bowel program) is and because the normal person has sensation. It can't be that bad right? Yes. Yes, it can. For starters, just the fact that another human being has to assist me with something I had been doing solo since I was probably three years old, is stressful. It's not an aspect of life I've ever been comfortable with, and now my feelings of embarrassment and stress are off the charts. Secondly, I can't feel any part of the process. I feel no urge to go, no indication that I've gone and no relief or comfort in having gone. A nurse has to essentially, manually stimulate my body to go and then continue to check inside to see if it's worked. I'm usually physically uncomfortable the entire time, because it forces my blood pressure to rise and the commode is not very comfortable. The whole ordeal can take up to two hours, and I have to go through it every other day. It's also very emotionally draining for me. Just imagine having a stranger (at first. I have several nurses that I've gotten to know over time) sit with you in the bathroom while you go, and then clean your bottom for you. It's horrific, even though that scenario doesn't cover the full extent of the regimen.
Even with a bowel regimen, there's always the wonderful anxiety that comes with being incontinent, and never knowing when or if my body may decide to "go" for no reason at all. Having to wear Depends in your twenties and thirties, is not an easy pill to swallow. Having the fear of an accident is on my mind every day, and especially if I have plans to go out or have people over. The threat of it happening is very real and often completely unpredictable. I try to avoid know causes, like antibiotics, but there have been many, many days where I've needed to cancel plans last minute. Either for fear of incontinence, or feeling ill if things don't go smoothly. I try my best to ignore it all when it's going on, but I'm never that successful. After that, I have my shower. Yay. Yet another person to see me naked and have to wash (aka touch) every inch of me. Then it's all topped off with having someone else brush my teeth, hair and feed me breakfast (like an infant). It's exhausting. Unfortunately, it hasn't gotten any easier over time, for me to deal with most of the daily ADLs.
I almost never discuss my personal care with people other than nurses, aides and a handful of friends and family. I'm writing about it today, because I'm just so fed up. I feel like people should know EVERY aspect of living with paralysis. Sometimes I feel like going outside to find a random huge crowd of people and start shouting through a megaphone all of the stuff I deal with, everyday. It also makes it hard for me to be sympathetic to most people (healthy), because their "problems" all seem so trivial and stupid to me. I'd welcome most things people complaint about, in exchange for being able to care for myself. I get so angry and upset, because people expect me to live like this and either have no clue what my (or other people in my situation) life is really like, or if they do know (medical professionals), they still have no cure, or solution. "Just deal with it, and move on."
The worst is when people tell me, "well, at least you're still alive." Yeah. Great! It's not exactly easy to just forget twenty four years of a "normal" life and just be content with living, for the sake of being alive. The fact of the matter is, I'm left with few choices. If I want to "move on" with my life, it means having to deal with ALL the stressors, every second of the day. It means acknowledging the fact that I'll be chronically tired, often sick (UTIs are very common with catheters, despite how clean you are), have instances of incontinence, reliant on medication, need assistance from others, be susceptible to skin break down, be at risk of dying from respiratory infections, weakening bones, and inevitably have to do things that make me very uncomfortable (for my own health and cleanliness). It's my life. Take it or leave it. I don't get a breather. I can't remove myself from the situation. There will be many days that I'm sad, ill, or don't want to bothered with anyone, or anything that's not absolutely necessary. I can't understand why or how people still expect more.
Just because I'm feeling ill or tired, or just don't want to get out of bed, doesn't mean I'm giving up. Although I might not be as busy as I was the first two years I've lived in my apartment (2007-2009), I still try my best to be productive. I'm still painting, albeit much less frequently. However, I've continued to look for ways to share my artwork and have been exploring digital art. I work on my website from time to time and try to post at least two blogs per month. On top of that, I'm always networking and hunting for ways to help advocate for a cure. My intentions are always to raise awareness. I don't strive to be an inspiration or motivator for other disabled people. Other people with disabilities (paralysis specifically) already know what it's like to deal with my day to day struggles. Either that, or they were born disabled and have a totally different perspective.
I can't speak for anyone else, but I can educate people on the facts and use my life as an example. I don't expect other people to cope the way I do. Every person has their own story. Every person that's had a spinal cord injury goes through a unique experience. Your lifestyle, age and health all factor into how much loss you have to face. Each injury is unique. My goal is solely to educate the general public about paralysis and open people's eyes to what it takes to keep moving forward and all the obstacles that come along with paralysis. No one should have to live with paralysis and I feel it's important that people understand why we so desperately need a cure.
Personally, I'm at a point in my life (and my injury) where I have a tiny glimmer of hope left for a cure(that I'll be able to benefit from), but live each day at a time. In my mind, I'll be paralyzed until I die. If a cure is found, that'll be fantastic, but I have to face the reality of the present. I can't plan my life around "someday", "might", or "if." The truth of the matter is that, most days I don't feel motivated. Many days seem overwhelming. I'm sick of being sick. It's incredibly hard having a chronic condition. There are certain things that are inevitable and at times it's hard to face the day, because I know what's coming. It's never easy, but I try my best. I think that's good enough.
Sent from my iPad
Saturday, July 31, 2010
Not Good Enough
A poem (for lack of a better word. I don't exactly follow a set pattern or style. More like random thoughts...) I wrote a couple of months ago. I rather not go into detail on my thoughts behind it. Interpretation is up to you. Just thought I'd share:
Guess I wasn't good enough
Not enough to be your all
You've cut me deeper than you'll ever know
The pain runs through, down to my soul
I was holding on to a fantasy
All the while, you moved on
False hope
False words
Guess you were never who I thought you were
I just kept holding on
Don't know what I'd do if I were you
Things to good to be true
I was clinging to your memory
Seems I had things wrong
Broken promises
Broken dreams
Guess you were never mine
Thought all I needed was to do my time
The past pushed me on
Those illusions are all gone
You choose your path
My heart snaps
Lost love
Lost hope
Guess it's my fault for losing you
Don't know what I'm going to do
Blame myself for everything
Can't see what good the future brings
Bittersweet memories
Erase them from my mind
Impossible to stop
Impossible to run away
Guess I wasn't good enough
Not enough to be your all
You've cut me deeper than you'll ever know
The pain runs through, down to my soul
I was holding on to a fantasy
All the while, you moved on
False hope
False words
Guess you were never who I thought you were
I just kept holding on
Don't know what I'd do if I were you
Things to good to be true
I was clinging to your memory
Seems I had things wrong
Broken promises
Broken dreams
Guess you were never mine
Thought all I needed was to do my time
The past pushed me on
Those illusions are all gone
You choose your path
My heart snaps
Lost love
Lost hope
Guess it's my fault for losing you
Don't know what I'm going to do
Blame myself for everything
Can't see what good the future brings
Bittersweet memories
Erase them from my mind
Impossible to stop
Impossible to run away
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