One of the many annoying things about being completely paralyzed, and totally dependent on others is the fact I can't take care of my own things. Not being able to be self sufficient with my personal hygiene and toileting needs are by far, the worst most embarrassing, degrading and invasive aspects of being paralyzed. Not being able to take myself to the bathroom, wash, dress, groom & feed myself are the aspects of being paralyzed I hate most. However, not being able to take care of my things, and maintain my living space is the second worst aspect of not being able to do anything.
Even though I have help from people (aides, nurses, friends & family) and try my best to direct how I would like things done, and where things should go, I'm forever frustrated because no matter what, no one ever manages to do things exactly the way I would like. It boils down to two key problems. First off, there are just too many "hands in the pot." On a daily basis I've got three, to four different people helping me. Even though I try my best to be organized and label everything I possibly can, things routinely get misplaced. Either the person helping me doesn't put the item away (right away), and the item ends up sitting in the wrong spot for days (and then potentially gets moved by someone else- in the effort to straighten up) or it gets put away in the wrong place all together. The second annoying thing that is most frustrating is that most times things are not as clean, or orderly as I'd normlly keep them, if I could care for them myself. The old adage "if you want something done right, do it yourself" most certainly applies to me, for basically everything. However, my paralysis keeps me from being able to do anything besides giving verbal directions and asking for help, and then hope for the best.
I try so hard not to lose my temper, get impatient and to not let "the little things" get to me. In the larger scope of everything I deal with (and am forced to endure), thanks to paralysis, I really can't afford to obsess over material things. Rationally, logically, I understand my stuff is just stuff. At best, my material possessions offer me a small amount of comfort and distraction. They don't really impact, or influence the bigger, more pressing dilemmas, physical limitations and burdens I deal with. I have enough on my mental "plate" at any given moment, that would ordinarily seem completely overwhelming to the average individual. If I let myself get mad or upset, every time I come out of my room to see a dirty kitchen, or my aides can't find something I'm looking for, I would go absolutely mad.
I think what makes living with paralysis especially hard for me, is the type of person I was before my injury. When I was on my feet, living independently I had a classic "A-type" personality. I was what you might call, a "control freak," and definite over achiever. I planned my life down to the nano-second. I put a lot of pressure on myself to succeed in everything I did: as a student, as a teacher, as a daughter, as a friend, as a person. I hid every self perceived flaw and tried to be as close to "perfection" as possible. Being organized, and a planner helped me thrive and even though I often balanced a lot on my plate, I managed well.
I remember when I was in college, my friends and family would tease me, because every semester I created a color coded grid, allotting time for everything: from class, to study time, to work, to sleep, to time with my boyfriend. I kept my time management chart with me at all times (in my school planners) and had several posted (one in my bedroom and one posted at my boyfriend's). I always used green to signify "boyfriend time." My ex was a much more laid back, and a "go with the flow" kind of person, so he was always forever getting frustrated with me. Looking back, it was a bit over the top, but I know it helped to keep me focused and on task. I ended up graduating from college with a 3.9 GPA, and I definitely attribute that to my ability to multi-task and micro manage my life.
Being organized also definitely helped me to be a good teacher. I had my lessons planned out months in advance (so I was never caught off guard, or left scratching my head for things to do). Everything in my classroom had its place and my students were each assigned roles (which I alternated from month to month, based on my seating charts). Even though I had nearly five hundred students, in twenty different classes, I always knew what I was doing with each group, and easily juggled up to eight or nine different projects, during any given week. My classroom ran like clockwork, which helped my students to stay on task and made it easy to maintain control and give directions.
By the time I had started teaching, I had graduated from using my paper college planner (highlighters and tons of post-its) to a hand held electronic organizer (Palm Pilot). My Palm Pilot was my life saver. I relied heavily on it, to balance my time between work, graduate classes, family time, going to the gym, running errands and my social life. My apartment was always spotless. I had a particular way of doing everything: cleaning, laundry, keeping records, paying bills, etc. I had a particular way for folding my clothes. My closet was organized by color, and grouped according to the various types of clothing (strapless shirts, short sleeve shirts, long sleeve shirts, skirts, capris, kakhis, dress pants & jeans). My dvds, and cds were alphabetized (since I owned hundreds). I kept all my receipts, and paperwork neatly filed in filing cabinets. My books shelves were organized by topic. Everything was easy to find.
I tried not to let things pile up, and cleaned up after myself everyday. I enjoyed coming home to a clean living space. I loved the crisp, clean scent of Clorox wipes, Swiffer solution, laundry detergent, Febreeze and Glade Plug-ins. I liked being able to always know where my things were, and to have everything tidy, uniform, and in its place. I always felt more peaceful and relaxed when everything was put away and everything was clutter free and sparkling. I tried to keep my home and classroom clean and organized at all times, so if an uninvited guest, or surprise visitor (like my principal- at work obviously) showed up, I wouldn't feel caught of guard or embarrassed.
My paralysis has taken nearly every ounce of control, and power away from me. The only thing I can do myself (once I get set up) is paint, write, handle my finances, shopping and direct the people helping me. If it weren't for the computer, I would have an even smaller list. Since I can't handle, or put away my own things, I have to rely on my memory, for keeping track of everything. It's critical that my helpers follow through with my directions, so that there is consistancy and I know where everything SHOULD be. Even though my family, friends and aides try their best to follow directions, everyone has his/her own little quirks and their own standard of cleanliness. No one person does things exactly as I would. I've had to learn to bite my tongue many, many times and learn how to be flexible and to go with the flow. Despite the fact that I have vastly expanded my tolerance for patience, there I still some days when I just want to rip my hair out & scream.
There are some things that require demonstration. No matter how great, or poor my vocabulary is (in English or Spanish) there are just times when I wish I could just SHOW the person helping me what I want, or what I mean. At times it is exasperating having to explain, and re-explain myself. There are many times when I have an aide or nurse helping me, but I end up calling my mother or sister over, because they know what to do, or how to do it. It's much quicker (and less frustrating) to have someone who knows what I want to teach, or demonstrate to my aide how to do what I want. It saves me a lot of time and aggravation.
The other thing that has been so difficult for me since my accident is having to share my space (and all of my things) with other people. For one, I live in a two bedroom, two bathroom apartment, so there's not a tremendous amount of space. My mom and sister live with me and although they've gotten better over the years, their definition of "clean" and "organized" doesn't usually stand up to my picky expectations. Then you have to consider the fact that I have several aides and nurses, which also touch, clean and put away my things. It only takes one person to misplace something, and I'm stuck playing detective, hunting through the entire apartment. Plus, almost all the furniture and stuff (in general) in the apartment is mine. I expect the common areas which we share, like the living room and kitchen to be clean. It irks me when they're not because I feel embarrassed by a messy home (which my aides, nurses & visitors see) and it also ticks me off when I feel as though my things aren't being cared for properly. Although I'm not miserly or greedy, I do take pride in the things I buy and own. I think it's unfair (and frustrating) when I see my things being misused, or neglected.
Certain things that bother me, like crumbs on the counter, half empty cups, food wrappers, shoes and articles of clothing lying around, don't seem bother my mom & sister. It's little, in the scheme of things, but it's hard not to get annoyed or angry. I hardly ever see their room or bathroom, but do occasionally ask my aides and nurses about their conditions. I feel it's my responsibility (but get annoyed because they are adults & feel I shouldn't need to check up after them- or nag them) because it's my apartment. They might not be embarrassed by ring stains in the toilet, or toothpaste in the sink, but I am. In my house growing up (with my dad & stepdad) laziness, and sloppiness weren't tolerated. I used to groan & complain as a kid, but now I understand it's because they worked hard for what we had and wanted my brother and I to respect that fact, and help them maintain things.
I was taught (at home & at school) that people judge you by your appearance. If you dress sloppy and keep a messy home, people are bound to think less of you. First impressions matter (in matters of building personal and professional relationships and in getting a job), how you speak, carry yourself and maintain your home all reflect on the type of person you are. I've always held those lessons close to my heart. I always want to put my best face forward, in every aspect of my life. I try to take pride in myself (although it's challenging given my condition) and my things and want others to take notice of that fact.
It's frustrating having to share my space (although my family is very supportive & comforting in many ways- I'd much prefer to be independent). It's hard having so many other people touch me and my things. I try my best to maintain control over what I can, but know there's only so much I can do. I can't realistically hold my family, aides and nurses to my personal standards, and expect them to be as nit picky as I am. I know that's too much to ask, and every time I try, I only end up getting more frustrated, dissolutioned and agitated. My accident made me go from being a control freak, to having absolutely no control whatsoever overnight. It hasn't been an easy transition, learning to compromise, lower my expectations and having to just "let go" of certain things.
If anything, the biggest lesson my accident has taught me, is that control is just an illusion. We all think we have control over our lives, but in reality all the best plans in the world can be shattered in an instant. Control is a coping mechanism we each use, to give our lives order and purpose. Unfortunately, anyone can lose control (over everything) easier, and more quickly than most people care to acknowledge or realize. Even after everything I've been through, and as helpless as I am, I'm still guilty of trying to be "in control" of what little I can. I know at times it might be futile, or even possibly end up blowing up in my face (when things don't turn out the way I "planned"- nothing rarely ever does), but it's ingrained in my nature and a hard habit to break.
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Showing posts with label stress. Show all posts
Showing posts with label stress. Show all posts
Sunday, July 17, 2011
Sunday, May 16, 2010
Slacker
Lately I've been feeling like a complete slacker. Mostly because I have painted in a while, and have nothing concrete planned. It's important to me to feel like I'm contributing to society, especially now, since I'm no longer teaching. I want to be working. I miss my job terribly. Sometimes I think teaching full time, on an elementary school schedule would be near impossible for me, in my condition. On the other hand, I'm confident that I could still do my job, if I had the assistance I needed. Realistically, I'm just not sure that I'd have the health or stamina to handle a forty (more like sixty) hour work week. So I've tried my best to compromise and still feel like I'm giving something. I never want to feel like I'm just leeching off the system. There are already too many people out there that choose to be selfish and lazy and abuse the system. That's not me.
The past two years I've had something to prepare for, every couple of months. Starting with the fundraiser, I sat for several newspaper interviews, did several online interviews, prepared for the three exhibits, painted for MFPA, went to an artist forum & did the two television shows. Now that it's all finished, I feel like I'm just sitting around. Part of the problem is the fact that I just don't feel well a lot of the time. My tolerance for the chair has been weakened, ever since I had that really bad bedsore on my upper thigh. After three or four hours I often feel feverish, have the chills or this weird tingly sensation I attribute to my catheter being pinched, or going to the bathroom. Either way, they are uncomfortable symptoms that often have no visible cause. I think it's just my body's way of letting me know I need to lay down. During the past six months or so, I've also been dealing with mysterious chest pains. It's not so much pain, as it is discomfort, but it is very annoying and makes it hard to relax. It started out as a tightness in between my ribcage and has since migrated to my left breast. At times, it feels like I have a huge boulder on top of the area. Other days, it feels like a giant is squeezing me with all its might. The worst is when it combines with my neck/shoulder pain. Most recently, I've been getting a throbbing pain all through my back, especially in my lower back. It's all very odd and frustrating, because I can't feel the exterior; I only feel the interior. Could I really be feeling my bones and muscles? I doubt it. Regardless, I've had all kinds of tests done in hopes of finding a cause and haven't had any luck. All my major organs are fine. My breathing is good and my blood work is fine. That leaves me with, "it could be stress or neurological pain." Great.
Long story short, is that I've been staying in bed quite a bit, these past six months or so. Mostly because I don't feel it's worth getting up, if I'm only going to feel crappy and crave being in bed the whole time. My painting has taken a back seat, as it is the one thing I can't do in bed. Even when I do get up, it's so few and far between that I usually don't feel like using the time to paint. However, then I feel guilty, like I'm being lazy. I have ideas ready; I just need to get started. It's especially hard to force myself when I know I don't have a set deadline or schedule. The shows kept me motivated. On the other hand, I start to think, if I got my butt in gear and painted more, I'd have more work to potentially exhibit. Instead, I've been trying to work on my website and I got some really nice color business cards printed up. I thought it would be more professional and an easy way to share my information. They're a custom design with one on my paintings on the front, along with my website address and a statistic about spinal cord injuries on the reverse side. Luckily, there are a million ways to promote yourself and/or a cause using the internet. I plan to continue working on computer stuff, but I really do need a push to paint!
In efforts of motivating myself, signed up to participate in something.called "the sketchbook project." It's run by a group called the "arthouse co-op, out of The Brooklyn Art Library. I just happened to click on a Facebook ad for it the other night, because it looked interesting. Basically, you sign up, they send you a sketchbook, you fill it & send it back. All of the sketchbooks then go on to exhibitions as part of a cross country tour. Each sketchbook gets abarcode, which can be used to track the book & see if people looked at it. The tour includes exhibits in a bunch of major cities: Brooklyn, NY Austin, TX San Francisco, CA Portland, MEAtlanta, GA &Chicago, IL. Once it's over, people will be able to look at them in the Brooklyn Art Library. I also paid a small extra fee, for the book to be digitized and added to an online library. It sounds like a really cool idea and I'm excited about participating. All I have to do is choose a theme, use the book & not change it's dimensions. I chose the theme "Help!" I thought it was perfect for the purpose of advocacy. I plan on making my sketchbook about paralysis and my hope for a cure. The cool thing is, I can sketch everything on my iPad and then print and transfer them to the book. So staying in bed is no excuse! It'll be interesting to document my progress and follow the book, on its travels. I'll definitely blog about it once I get started.
Speaking of blogs, I had read this article about a paralyzed pro gamer (Randy) & thought it would make for an interesting blog, if I could interview him. I took a chance & contacted him through his youtube site. He agreed & most likely I'll be talking to him soon, through Skype.It'll be cool to compare notes with Randy & hopefully make an interesting blog. I'm sure there are people out there that think they can't play video games, because of physical disabilities. I'm hoping by sharing mine and Randy's techniques and stories we can inspire some new gamers. I've always been into gaming, but it's been especially helpful in coping with my situation. Gaming provides a much needed escape and source of enjoyment.
Long story short, is that I've been staying in bed quite a bit, these past six months or so. Mostly because I don't feel it's worth getting up, if I'm only going to feel crappy and crave being in bed the whole time. My painting has taken a back seat, as it is the one thing I can't do in bed. Even when I do get up, it's so few and far between that I usually don't feel like using the time to paint. However, then I feel guilty, like I'm being lazy. I have ideas ready; I just need to get started. It's especially hard to force myself when I know I don't have a set deadline or schedule. The shows kept me motivated. On the other hand, I start to think, if I got my butt in gear and painted more, I'd have more work to potentially exhibit. Instead, I've been trying to work on my website and I got some really nice color business cards printed up. I thought it would be more professional and an easy way to share my information. They're a custom design with one on my paintings on the front, along with my website address and a statistic about spinal cord injuries on the reverse side. Luckily, there are a million ways to promote yourself and/or a cause using the internet. I plan to continue working on computer stuff, but I really do need a push to paint!
In efforts of motivating myself, signed up to participate in something.called "the sketchbook project." It's run by a group called the "arthouse co-op, out of The Brooklyn Art Library. I just happened to click on a Facebook ad for it the other night, because it looked interesting. Basically, you sign up, they send you a sketchbook, you fill it & send it back. All of the sketchbooks then go on to exhibitions as part of a cross country tour. Each sketchbook gets abarcode, which can be used to track the book & see if people looked at it. The tour includes exhibits in a bunch of major cities: Brooklyn, NY Austin, TX San Francisco, CA Portland, MEAtlanta, GA &Chicago, IL. Once it's over, people will be able to look at them in the Brooklyn Art Library. I also paid a small extra fee, for the book to be digitized and added to an online library. It sounds like a really cool idea and I'm excited about participating. All I have to do is choose a theme, use the book & not change it's dimensions. I chose the theme "Help!" I thought it was perfect for the purpose of advocacy. I plan on making my sketchbook about paralysis and my hope for a cure. The cool thing is, I can sketch everything on my iPad and then print and transfer them to the book. So staying in bed is no excuse! It'll be interesting to document my progress and follow the book, on its travels. I'll definitely blog about it once I get started.
Speaking of blogs, I had read this article about a paralyzed pro gamer (Randy) & thought it would make for an interesting blog, if I could interview him. I took a chance & contacted him through his youtube site. He agreed & most likely I'll be talking to him soon, through Skype.It'll be cool to compare notes with Randy & hopefully make an interesting blog. I'm sure there are people out there that think they can't play video games, because of physical disabilities. I'm hoping by sharing mine and Randy's techniques and stories we can inspire some new gamers. I've always been into gaming, but it's been especially helpful in coping with my situation. Gaming provides a much needed escape and source of enjoyment.
Wednesday, May 12, 2010
A Matter of Pride??
Living with paralysis is not easy. The smallest tasks that most people take for granted, require help. It'll be five years since my accident, this coming June and there are still aspects of my life that are as hard to cope with as they were back in 2005. My physical wounds only took a few months to heal (what little damage that could), but my mental and emotional wounds still feel fresh sometimes.
I know every situation is unique and the life people have before their spinal cord injury plays a big role in how they cope to the drastic changes of being paralyzed. I've come across quite a few people that had no real direction, or motivation at the time of their injury, had a weak support system of friends/family and few, too little skills to fall back on. It is a blessing and a curse that I had already finished college and had begun to establish my career, when I got hurt. I have a lot of skills, real world experience and a strong support system of friends and family. Despite all that, there are many days I find it incredibly hard to find reasons why I should keep trying; why I should move forward. The inner drive that helped me to be successful on me feet, has been my source of strength, while living in a chair. I can only imagine how much harder it would be to go through all this without the support of friends/family. It makes me very sad to think about all of things I have and lost, but recognize the fact that I still have more than some people I know. I do feel blessed to have had the twenty-four "normal," healthy years that I had. Although I've only been injured a fifth of my life, the time I spent on my feet seems like a blink of the eye, in comparison to the last five years. It is the sheer fact that I worked so hard and achieved so much, that makes it hard for me to want to just give up. A part of me feels like I have to fix the mistake and get back everything and anything I can, so that I don't feel like all my efforts were a waste of time and energy.
The few months before my accident I felt as though all the pieces of my life had finally fell into place. I had the brief luck of feeling completely at peace with my life and happy about the prospects of my future. I don't know if it would really matter as to how I cope with my paralysis, if I had never felt accomplished, happy or proud. Maybe if my life before had miserable, I'd have even less reason to keep going. Contrarily, maybe I'd have less reasons to feel so sad, because I wouldn't have lost so much. I'll never know, but I believe that it is definitely a factor in why I'm able to find strength, while others can't. It's bittersweet to having felt so close to realizing my dreams, only to have it all abruptly taken away. I think part of me feels the need to salvage what I can from my old life, because I'm still chasing after those same dreams. In away, it's like how drugs addict, perpetually chase after the sensation of their first high; although no matter what they do, they never find it. I long to feel the peace and happiness that I felt, those few months before my injury.
Reality is, most of what I had is gone and there's no way to get it back. My material possessions, like my apartment, clothes, car, etc., have all been slowly replaced with newer, more accessible versions or given away. My career is gone, but it's not from lack of trying. I was a year away from tenure, so unfortunately I had nothing to use as leverage, in terms of fighting the district's decision. Although it's painful, I can understand the choice, from a business perspective. I now require a double salary (in a sense), because of my need for an instructional aide. Knowing what I know now, I'm not sure that I'd be able to handle a full time job (physically speaking and having to relying on others to get me ready and for transportation). I've found a compromise in painting. It's not as rewarding, but at least I still feel like I'm using my degree to create art and teach a message. The forth major loss (after my functional abilities,possessions &career) I've had to face is that many of my personal relationships have gone or changed. I feel as though I've tried my best to stay connected and I remain hopeful that those relationships might mend some day. My efforts just aren't good enough for everyone and I have to restrain myself, at times, from going back time after time to work things out, only to end up hurt, again. In all, at least half of my lifetime goals are on hold indefinitely and trying to be patient, while remaining hopeful seems impossible sometimes.
Everything now is a compromise. I live in my own apartment, but with roommates (currently family). I own a car, but need someone to drive it. I create art, but I'm not working in the field I love. I crave time alone and privacy, but need help for everything. I have a dog, but can't take care of her. The list goes on an on. No matter how hard my loved ones, nurses or aides try, no one will ever to be able to do things the way I'd have done them myself (and for certain things, I'd much prefer no help at all). Not to mention, each person assisting me has their own style and quirks. My day to day life is packed full of tiny compromises. Being what most people would classify as an "A" type personality, it has been exceptionally difficult having little, to no control. I like things organized and precise. I love my privacy and freedom to travel. I have high standards on how things should be done and often over do things or get things done in advance. I used to be the queen of planning & had my life charted out and color coded. All of these character traits helped me be a successful student and teacher and allowed me to take on a heavy load of responsibilities. Now, those same traits make it difficult to deal with my need to completely rely on others. I've slowly learned to embrace the motto of taking things one day at a time and have learned to be patient. I'm much better at "going with the flow," than before and have since realized that being flexible is my key to keeping my sanity.
So many disabled people I know have the attitude of, "we can do anything able-bodied people can do, only in a different way." I understand the desire to want equality and respect for people with disabilities, but the upbeat "can do" attitude just irks me sometimes. I feel as though projecting that image of "being just like everyone else" glosses over the reality of the situation and belittles the struggles that people with disabilities face every day. I rather educate the public about the challenges I face and the obstacles that are due to my paralysis. I think acceptance comes through understanding. If society is educated about the realities of paralysis, society will A- embrace the urgent need for a cure and B- be informed enough to know what people with disabilities capabilities and necessities are. I agree that people with disabilities should have equal rights in terms of employment and that more consideration should be made to making things accessible. That said, I'm a realist. The "can doers" get on my nerves, because they often only paint half the picture and sugar coat the situation. If we (those of us with paralysis) are "just like everyone else", then why should people care about helping find a cure? It bothers me that an uneducated public might think: "If things are ok, why not focus on other issues? After all, those people living in wheelchairs don't have it so bad, right? So what is people with paralysis have to do things differently? At least they can do everything we do."
The truth of the matter is, I can't do everything most people can do and neither can the millions of other people suffering with paralysis. Yes, if we (those of us with paralysis) have the right services and support, we can still participate in many things and live full lives. If given the opportunity, we can contribute to society and be productive and certainly deserve respect. However, the reality is, that we are helpless without other people. Our minds might function just fine and we may "call the shots," but in the end, we can not do it alone. At times, I think the "can do" attitude stems from the need to want to feel included or not wanting to wound a person's sense of pride. Some times I think, maybe deep down, the "can do" attitude means that person has accepted his/her disability and has given up on a cure. Other times, I think the "can doer" uses that mind set to help himself/herself cope with all the loss, while trying not to put emphasis on all the realities of life that come along with being paralyzed. However, society needs to see the whole picture. Many people are completely clueless of what a day in the life of someone with paralysis is like. The things that often go overlooked or seem insignificant to an able-bodied person are often big ordeals and stressful for people with disabilities. Toileting is a perfect example of something that the average person doesn't think about, because for them it is a private, personal matter and even if they have insecurities, they have the option not to share them. Going to the bathroom is a basic necessity of life, so no matter how unpleasant, or embarrassing it might be, my paralysis forces me to invite other people into my very private space, in order to help me. I have no choice but to cope with the situation. Cope, or go crazy, I suppose. I've had low self esteem my entire life, so I understand the desire to want to mask flaws or perceived abnormalities. Deep down everyone wants to fit in.
The danger of always acting like a "can doer"' is that it ignores the all the reasons why paralysis is so awful and it can back fire in terms of people's quest for equality. The expression "careful what you wish for, because you might just get it," often crosses my mind. For people with disabilities to be truly "equal" to mainstream society, that would imply that we don't need any special allowances or modifications. Naturally, that is absurd. Most people mean "equal opportunity," when they refer to being equal and do not that people with disabilities should be held to the same criteria as everyone else. I see a problem with this mentality. You can't have your cake and eat it too. I agree that people with disabilities should be given equal opportunity and should be provided with what ever adaptations, modifications or assistance they need, in order for them to be able to be included or productive members of society. However, I think it's critical that the average person know why modifications are necessary in the first place. For example, the fact that I rely on someone else to get dressed, eat, get in my chair and to provide me with transportation. It's not always feasible for me to be on time and I often have to cancel plans. However, these are issues outside of my control and should not reflect poorly on me or be counted against me. Trust me, I would love to be able to hop out of bed into the shower and out the door. Reality is, I can't and while I might have been a very punctual person before, it's not always the case now. People need to be educated. The more people know about various disabilities, the easier it is to promote understanding and acceptance. If more people really knew about the nuances of paralysis and how the disability effects the individual and the extended family, there would be a much louder cry for a cure. If more people understood the challenges of living with a disability people would be more aware and sensitive towards the needs of disabled community. Think about how many times you've gone out and thought, "Why isn't the ramp over here?"; "Am I going to be able to fit a wheelchair through there?"; "How am I going to open that door?." Most people don't consider things with disabilities in mind, partly out of ignorance and party because it hasn't impacted their life.
I think it's our job (those of us living with disabilities and those of us that have loved ones with disabilities) to get out there and help people see why we are fighting for a cure. I applaud others for trying to inspire and be role modes for other people with disabilities. I think it's important that we support one another. Don't get me wrong, I'm not totally against the "can do" attitude. I'm also by no means perfect or think I'm always right. I have a ton of insecurities and vanities. Everyone can benefit from a positive message. "Can doers" offer hope and inspiration to everyone, because of what they do, despite their limitations. I suppose there are certain aspects of my life that others might say are motivational or positive. It's certainly not my goal to be a downer or negative. It is my mission to be realistic. As embarrassing as it is at times, I open myself up to the public, in hopes of raising awareness. I'm not comfortable with my current situation. I'm not looking for pity, but it doesn't offend me when people express sympathy for my situation. I don't view that as degrading; I view it as sympathetic. You know what? I'm sorry for my situation too. It is sad to think about everything I lost and it's not easy living with paralysis. Pride is useless to me. I can't think of anything about paralysis that I'm proud of. I feel satisfaction and/or accomplished at times. I don't have to try. I certainly don't have to make myself uncomfortable in hopes of helping find a cure. I do what I do because I feel a need to educate people. In fact, I think those of us with spinal cord injuries have a valuable, unique perspective to share, because we can relate to both able body people as well as disabled body people. Spinal cord injuries can happen to anyone at any time and have the potential to radically change a life in a matter of seconds. People might not seriously consider the risk of disease, especially if they are young and healthy, but no one can ignore the potential of injury. Spinal cord injuries have nothing to do with genetics, diet, race or gender; everyone is susceptible. In a way I think of raising awareness as a moral obligation, in addition to its benefits of fostering understanding and raising support for a cure.
All in all, I just wish people would be honest. Be real. Be open. Let people in and help them understand why we need a cure. The bottom line is that, no matter how happy or how well someone copes with his/her disability, I'm 99% certain that anyone would gladly trade his/her chair in exchange for a cure. No rational human being would choose dependence, sickness and obstacles over health and freedom. Put your pride aside for the greater good (even if it''s just every now and then) and help fight for a cure. The more people you touch (effect, inspire, motivate and/or educate), the more people will care. I work on coping with my situation every day. I try to make the best of my situation, but I refuse to ever accept my paralysis. I know it's my reality, for now and even perhaps until I die, but I will never accept that it's ok. It's not ok. No one should have to live like this. At the very least, everyone deserves to be healthy and I would never wish this life on someone else. That is why I say it's my responsibility to do something, even if it's small.
I know every situation is unique and the life people have before their spinal cord injury plays a big role in how they cope to the drastic changes of being paralyzed. I've come across quite a few people that had no real direction, or motivation at the time of their injury, had a weak support system of friends/family and few, too little skills to fall back on. It is a blessing and a curse that I had already finished college and had begun to establish my career, when I got hurt. I have a lot of skills, real world experience and a strong support system of friends and family. Despite all that, there are many days I find it incredibly hard to find reasons why I should keep trying; why I should move forward. The inner drive that helped me to be successful on me feet, has been my source of strength, while living in a chair. I can only imagine how much harder it would be to go through all this without the support of friends/family. It makes me very sad to think about all of things I have and lost, but recognize the fact that I still have more than some people I know. I do feel blessed to have had the twenty-four "normal," healthy years that I had. Although I've only been injured a fifth of my life, the time I spent on my feet seems like a blink of the eye, in comparison to the last five years. It is the sheer fact that I worked so hard and achieved so much, that makes it hard for me to want to just give up. A part of me feels like I have to fix the mistake and get back everything and anything I can, so that I don't feel like all my efforts were a waste of time and energy.
The few months before my accident I felt as though all the pieces of my life had finally fell into place. I had the brief luck of feeling completely at peace with my life and happy about the prospects of my future. I don't know if it would really matter as to how I cope with my paralysis, if I had never felt accomplished, happy or proud. Maybe if my life before had miserable, I'd have even less reason to keep going. Contrarily, maybe I'd have less reasons to feel so sad, because I wouldn't have lost so much. I'll never know, but I believe that it is definitely a factor in why I'm able to find strength, while others can't. It's bittersweet to having felt so close to realizing my dreams, only to have it all abruptly taken away. I think part of me feels the need to salvage what I can from my old life, because I'm still chasing after those same dreams. In away, it's like how drugs addict, perpetually chase after the sensation of their first high; although no matter what they do, they never find it. I long to feel the peace and happiness that I felt, those few months before my injury.
Reality is, most of what I had is gone and there's no way to get it back. My material possessions, like my apartment, clothes, car, etc., have all been slowly replaced with newer, more accessible versions or given away. My career is gone, but it's not from lack of trying. I was a year away from tenure, so unfortunately I had nothing to use as leverage, in terms of fighting the district's decision. Although it's painful, I can understand the choice, from a business perspective. I now require a double salary (in a sense), because of my need for an instructional aide. Knowing what I know now, I'm not sure that I'd be able to handle a full time job (physically speaking and having to relying on others to get me ready and for transportation). I've found a compromise in painting. It's not as rewarding, but at least I still feel like I'm using my degree to create art and teach a message. The forth major loss (after my functional abilities,possessions &career) I've had to face is that many of my personal relationships have gone or changed. I feel as though I've tried my best to stay connected and I remain hopeful that those relationships might mend some day. My efforts just aren't good enough for everyone and I have to restrain myself, at times, from going back time after time to work things out, only to end up hurt, again. In all, at least half of my lifetime goals are on hold indefinitely and trying to be patient, while remaining hopeful seems impossible sometimes.
Everything now is a compromise. I live in my own apartment, but with roommates (currently family). I own a car, but need someone to drive it. I create art, but I'm not working in the field I love. I crave time alone and privacy, but need help for everything. I have a dog, but can't take care of her. The list goes on an on. No matter how hard my loved ones, nurses or aides try, no one will ever to be able to do things the way I'd have done them myself (and for certain things, I'd much prefer no help at all). Not to mention, each person assisting me has their own style and quirks. My day to day life is packed full of tiny compromises. Being what most people would classify as an "A" type personality, it has been exceptionally difficult having little, to no control. I like things organized and precise. I love my privacy and freedom to travel. I have high standards on how things should be done and often over do things or get things done in advance. I used to be the queen of planning & had my life charted out and color coded. All of these character traits helped me be a successful student and teacher and allowed me to take on a heavy load of responsibilities. Now, those same traits make it difficult to deal with my need to completely rely on others. I've slowly learned to embrace the motto of taking things one day at a time and have learned to be patient. I'm much better at "going with the flow," than before and have since realized that being flexible is my key to keeping my sanity.
So many disabled people I know have the attitude of, "we can do anything able-bodied people can do, only in a different way." I understand the desire to want equality and respect for people with disabilities, but the upbeat "can do" attitude just irks me sometimes. I feel as though projecting that image of "being just like everyone else" glosses over the reality of the situation and belittles the struggles that people with disabilities face every day. I rather educate the public about the challenges I face and the obstacles that are due to my paralysis. I think acceptance comes through understanding. If society is educated about the realities of paralysis, society will A- embrace the urgent need for a cure and B- be informed enough to know what people with disabilities capabilities and necessities are. I agree that people with disabilities should have equal rights in terms of employment and that more consideration should be made to making things accessible. That said, I'm a realist. The "can doers" get on my nerves, because they often only paint half the picture and sugar coat the situation. If we (those of us with paralysis) are "just like everyone else", then why should people care about helping find a cure? It bothers me that an uneducated public might think: "If things are ok, why not focus on other issues? After all, those people living in wheelchairs don't have it so bad, right? So what is people with paralysis have to do things differently? At least they can do everything we do."
The truth of the matter is, I can't do everything most people can do and neither can the millions of other people suffering with paralysis. Yes, if we (those of us with paralysis) have the right services and support, we can still participate in many things and live full lives. If given the opportunity, we can contribute to society and be productive and certainly deserve respect. However, the reality is, that we are helpless without other people. Our minds might function just fine and we may "call the shots," but in the end, we can not do it alone. At times, I think the "can do" attitude stems from the need to want to feel included or not wanting to wound a person's sense of pride. Some times I think, maybe deep down, the "can do" attitude means that person has accepted his/her disability and has given up on a cure. Other times, I think the "can doer" uses that mind set to help himself/herself cope with all the loss, while trying not to put emphasis on all the realities of life that come along with being paralyzed. However, society needs to see the whole picture. Many people are completely clueless of what a day in the life of someone with paralysis is like. The things that often go overlooked or seem insignificant to an able-bodied person are often big ordeals and stressful for people with disabilities. Toileting is a perfect example of something that the average person doesn't think about, because for them it is a private, personal matter and even if they have insecurities, they have the option not to share them. Going to the bathroom is a basic necessity of life, so no matter how unpleasant, or embarrassing it might be, my paralysis forces me to invite other people into my very private space, in order to help me. I have no choice but to cope with the situation. Cope, or go crazy, I suppose. I've had low self esteem my entire life, so I understand the desire to want to mask flaws or perceived abnormalities. Deep down everyone wants to fit in.
The danger of always acting like a "can doer"' is that it ignores the all the reasons why paralysis is so awful and it can back fire in terms of people's quest for equality. The expression "careful what you wish for, because you might just get it," often crosses my mind. For people with disabilities to be truly "equal" to mainstream society, that would imply that we don't need any special allowances or modifications. Naturally, that is absurd. Most people mean "equal opportunity," when they refer to being equal and do not that people with disabilities should be held to the same criteria as everyone else. I see a problem with this mentality. You can't have your cake and eat it too. I agree that people with disabilities should be given equal opportunity and should be provided with what ever adaptations, modifications or assistance they need, in order for them to be able to be included or productive members of society. However, I think it's critical that the average person know why modifications are necessary in the first place. For example, the fact that I rely on someone else to get dressed, eat, get in my chair and to provide me with transportation. It's not always feasible for me to be on time and I often have to cancel plans. However, these are issues outside of my control and should not reflect poorly on me or be counted against me. Trust me, I would love to be able to hop out of bed into the shower and out the door. Reality is, I can't and while I might have been a very punctual person before, it's not always the case now. People need to be educated. The more people know about various disabilities, the easier it is to promote understanding and acceptance. If more people really knew about the nuances of paralysis and how the disability effects the individual and the extended family, there would be a much louder cry for a cure. If more people understood the challenges of living with a disability people would be more aware and sensitive towards the needs of disabled community. Think about how many times you've gone out and thought, "Why isn't the ramp over here?"; "Am I going to be able to fit a wheelchair through there?"; "How am I going to open that door?." Most people don't consider things with disabilities in mind, partly out of ignorance and party because it hasn't impacted their life.
I think it's our job (those of us living with disabilities and those of us that have loved ones with disabilities) to get out there and help people see why we are fighting for a cure. I applaud others for trying to inspire and be role modes for other people with disabilities. I think it's important that we support one another. Don't get me wrong, I'm not totally against the "can do" attitude. I'm also by no means perfect or think I'm always right. I have a ton of insecurities and vanities. Everyone can benefit from a positive message. "Can doers" offer hope and inspiration to everyone, because of what they do, despite their limitations. I suppose there are certain aspects of my life that others might say are motivational or positive. It's certainly not my goal to be a downer or negative. It is my mission to be realistic. As embarrassing as it is at times, I open myself up to the public, in hopes of raising awareness. I'm not comfortable with my current situation. I'm not looking for pity, but it doesn't offend me when people express sympathy for my situation. I don't view that as degrading; I view it as sympathetic. You know what? I'm sorry for my situation too. It is sad to think about everything I lost and it's not easy living with paralysis. Pride is useless to me. I can't think of anything about paralysis that I'm proud of. I feel satisfaction and/or accomplished at times. I don't have to try. I certainly don't have to make myself uncomfortable in hopes of helping find a cure. I do what I do because I feel a need to educate people. In fact, I think those of us with spinal cord injuries have a valuable, unique perspective to share, because we can relate to both able body people as well as disabled body people. Spinal cord injuries can happen to anyone at any time and have the potential to radically change a life in a matter of seconds. People might not seriously consider the risk of disease, especially if they are young and healthy, but no one can ignore the potential of injury. Spinal cord injuries have nothing to do with genetics, diet, race or gender; everyone is susceptible. In a way I think of raising awareness as a moral obligation, in addition to its benefits of fostering understanding and raising support for a cure.
All in all, I just wish people would be honest. Be real. Be open. Let people in and help them understand why we need a cure. The bottom line is that, no matter how happy or how well someone copes with his/her disability, I'm 99% certain that anyone would gladly trade his/her chair in exchange for a cure. No rational human being would choose dependence, sickness and obstacles over health and freedom. Put your pride aside for the greater good (even if it''s just every now and then) and help fight for a cure. The more people you touch (effect, inspire, motivate and/or educate), the more people will care. I work on coping with my situation every day. I try to make the best of my situation, but I refuse to ever accept my paralysis. I know it's my reality, for now and even perhaps until I die, but I will never accept that it's ok. It's not ok. No one should have to live like this. At the very least, everyone deserves to be healthy and I would never wish this life on someone else. That is why I say it's my responsibility to do something, even if it's small.
Tuesday, January 26, 2010
Stressed Out!
As you can imagine, I've been dealing with a significant amount of stress since my accident. I would say my day to day stress level is relatively high compared to the average person. I say this based on my past experience and the comparison in the types of problems or stressors I dealt with before my injury versus now. I can also cite examples based on all my friends and family. I realize that all emotions or moods are relative; given that each person has different coping skills and life experience. Stress is not something we can really quantify so it's hard to compare stress levels between people. Not to mention, one man's problem could be another man's blessing.
My entire perspective on life now is different from before my accident and in many ways I feel like a completely different person. My accident changed me both physically and mentally. I think of my life in two parts and feel as though I have lived two separate lives. It's as if the "old Christina" died June 5, 2005 and the "new Christina" emerged. Obviously, this is figurative, because I didn't actually die. However many of my old thought processes and view points "died" and have been replaced with new ones. I imagine even if I were to be cured and on my feet again, that the experience of living with paralysis will have left me forever changed.
I have to admit that despite all the hardships and loss I've endured, the accident made me a much stronger person mentally. I've been able to deal with things that I never thought I could. The human spirit is pretty amazing and I even surprise myself at times. Most people think they know how they will react to stress or trauma, but I've found that a lot of people don't give themselves enough credit. I know for sure that if someone asked me how I'd react to my situation before I was injured, I would have said I'd rather be dead. There have been many times I've thought that since my accident. However, there is a huge difference in imagining something versus having experienced it. Prior to my accident I had never so much as broken a bone. My closet "brush with death" would have been a sprained wrist, four stitches or perhaps my old driving habits. In the past I imagined giving up would be easy in comparison to living with paralysis, but the fear I felt those seconds or minutes I spent under the water that night changed all that. I felt no peace or comfort when I was drowning. There was no white light or sense of calming. In those few moments, I felt overwhelmed with fear, sadness and fear. It's hard to let go of that fear, especially knowing what I went through in the hospital. The thought of returning to that state terrifies me. I was naive in thinking how easy it would be to just give up. The cliche "ignorance is bliss" rings true when I analyze my thoughts before my injury. There's no way of really knowing how much stress you can handle unless you are faced with it. For me, the experience of coming so close to death has made push to stay alive. My driving force is based on wanting to fix my mistakes and my hope for the future. Every time I think I can't possibly go on another day I try and remind myself of everything I've been through and everything I've somehow overcome.
I feel as though paralysis is the source on ninety percent of my stress and it is frustrating trying to figure out ways to cope. There is no guarantee that my paralysis will ever be cured, therefore I live with the fact that no matter what I do there are certain problems that might not ever go away. That is why I say that I have more stress than the average person. The only true solution would be a cure to paralysis. It is especially maddening when people suggest medication or talk therapy to me. I've done both with little success. I take medication, but still feel depressed and anxious. How can I not, given my condition? Isn't it normal to be bothered by paralysis? Who on earth (of sound mind) would be happy to be sick or have a chronic illness? I think it's only logical that my situation bothers me and find it useless to think I'll ever be completely satisfied this way. If there is no remedy for the source of all my problems, all I can do is find new ways to deal with secondary issues created by the underlying cause. I'm sure most people with chronic illnesses can relate. It's difficult to cope with symptoms or outlying issues, when you know you can't get rid of the root of the problem. It can become so overwhelming at times, because I know no matter how many days I get through, there is another day of the same stuff waiting for me. My paralysis effects everything; until it's cured I will always face certain obstacles and stress.
So many of life's stress factors have solutions or resolve themselves with time. Relationships, financial troubles, raising children and even grief can be worked out over time; the pain dulls or solutions are found. In my situation, there are many stressful things that I need to do just to stay alive. As much as it bothers me, I don't have the luxury of moving on, or getting over it. I'm faced with the consequences of my accident day in and day out. Although some things that used to bother me seem ridiculous to me now, at the time they seemed valid. I try and keep that in mind when I talk with family and friends. I can see how easily someone in my situation could slip into cynicism and bitterness. It's hard to be sympathetic when your problems seem so grave in comparison to the people around you. I can't tell you how often I've thought, "I wish those were my problems." It's at those moments I have to remind myself that most of my friends and family will never truly be able to see life from my perspective and I shouldn't fault them for that. I try and think about how I might have reacted before my accident and try my best to recall my past. I push myself to make an effort to take a genuine interest in my loved ones lives. I value them and don't think it's fair to drag them down with me or belittle their problems (regardless of how insignificant or shallow they might seem to me). No one wants to be around a grouch or someone in a constant state of self pity.
I've found ways to not only cope with my paralysis, but how to mask a lot of what I'm going through. In some respect I feel it's not fair to those around me, even if I start to feel overwhelmed by everything I've kept bottled up. Most times I feel disenchanted and see no point in discussing my problems. The majority of stuff that bothers me is directly related to my paralysis such as, needing help with every single little thing. I never get a break from people and never feel like a truly have privacy. I've been injured now for over four years and still haven't figured a way to deal with needing help with highly personal things, such as going to bathroom, being bathed, fed and dressed. Outwardly, I'm not breaking into tears every morning or going into hysterics, but on the inside there's a torrent of emotions running through me. If I do express my discomfort, most people try and brush it off or down play it like it's no big deal. I understand there aren't many right answers or advice to give. No words can ever make me feel 100% better. In fact, most of the time I find myself getting annoyed and/or frustrated with the person, especially if they are able bodied. My able bodied friends and family sometimes think they can imagine what it's like to be paralyzed, but they can't. It is one of those things that you have to live through to understand. The problem with imagining something is that you are limited to drawing from the experiences you've had. There is no experience you could have that compares to certain aspects of paralysis. Often times I can't even find the words to explain what I'm feeling, because it's unlike anything I ever experienced on my feet. It can be very frustrating, because no matter what I use as a comparison, it's just not the same . Sure, you could try and simulate the experience by restraining your limbs; to experience the discomfort of having to have help, or feel the sense of vulnerability. However, such a simulation doesn't even begin to truly mimic what it's like to be paralyzed. A good example of this is how nurse's aides often have to "ride" in a Hoyer lift to help promote empathy for their patients. Although some people might feel nervous at the thought of being suspended in the air, it's nothing close to what it's like for someone like me. For starters, an able bodied person can grab onto the machine for security. I have no way to stop myself from falling or brace myself if I do fall. Secondly, an able bodied person can feel the sling beneath them. I have no sensation below my chest and therefore, if I can't see what's going on it feels as though the rest of my body does not exist. Not to mention the fact that someone taking part in a simulated exercise knows that there discomfort is only temporary. If I knew for sure that I'd be back on my feet, it'd give me a tremendous boost of strength and motivation. It's the difference of an innocent person serving a short jail sentence and being on death row. In both cases the innocent person is being unfairly punished, but the person with a designated time frame has the advantage of knowing that it's temporary. If I knew the date of when a cure will be found I would have the peace of mind in knowing what I'm up against. A set time frame gives you something to look forward; there is an the end. Even if that magical cure date was beyond my lifetime at least I'd have an answer. My situation overwhelms me at times because of the uncertainty of ever getting cured. Granted, my accident is an example that, despite set plans, no one ever really knows there future. Plans give us the illusion of control over our lives, and there are times when life throws in surprises. However, there are certain definites, just as I know for sure that my birthday will be on July 4th, it would be awesome to know when there will be a cure.
One of the many bad things about stress is that can have a direct impact on your health. Stress, like many emotions, it is not limited to just effecting your mood. I think keeping all of my stress bottled up is having a negative effect on my body. Lately, my aides and I have noticed that I'm losing hair. Having long, thick hair that is prone to knots means I'm accustomed to losing a certain amount everyday, just by brushing it. Recently though, it's been much too much to be normal. I know it could be from a dietary deficiency, but I doubt it. My diet is well rounded with fruits, veggies and protein and it hasn't changed drastically in any way. My medicine and environment are stable, so I'm thinking it's got to be stress related. I've also been battling acne since my accident. My skin used to be near flawless, which I had chalked up to good genes. Now I'm beginning to wonder if other factors (like medicine) were keeping my skin so nice or if the problem is only related to my current situation. I have several theories as to the cause; stress being number one. I have been going to a dermatologist and trying various treatments, but none have been very successful. My body has already been through so many changes because of the paralysis and now it seems I'm creating more problems by stressing out. I know emotion/mood has an effect on health and healing, but it is near impossible for me to eliminate the stress, anxiety or sadness I often feel. My hair and skin are not only proof of stress, they are now also a new source of stress. I feel faced with a double edged sword.
I've decided to attempt to lower my stress level by writing letters to a few people close to me. I think some of the things that are bothering me could have solutions, if the people doing them are willing to compromise with me, or change. Although I don't particularly mind arguing, I'm terrible at approaching situations where I have to tell someone they are doing something that bothers me. I'm fine once the ice is broken, but I struggle to bring up the subject. I have the most difficulty when the issue effects me specifically. In other words, if you did something mean or bothersome to my friend, I have no qualms about opening my mouth immediately. I'm fine at speaking up to help others, but I stink at sticking up for myself. I often just bite my tongue or let the frustration roll off my shoulders. I can forgive easily, so minor annoyances often get overlooked. The problem is, if I ignore or avoid things when they are small, they tend to snowball into something big; making it even harder to address or fix issue. It is the one area that I have a hard time expressing myself. It's especially worst with adults and even more so the closer you are to me (relationship wise). Writing down my thoughts gives me the comfort of being able to say almost anything. I also get satisfaction in knowing I've said everything I wanted to say, without getting interrupted or forgotten. So, I'm hoping to break the ice with a few people, about a few issues that are resolvable. I'm hoping the letters will open up the dialog and that I'm able to get a little relief.
I have to admit that despite all the hardships and loss I've endured, the accident made me a much stronger person mentally. I've been able to deal with things that I never thought I could. The human spirit is pretty amazing and I even surprise myself at times. Most people think they know how they will react to stress or trauma, but I've found that a lot of people don't give themselves enough credit. I know for sure that if someone asked me how I'd react to my situation before I was injured, I would have said I'd rather be dead. There have been many times I've thought that since my accident. However, there is a huge difference in imagining something versus having experienced it. Prior to my accident I had never so much as broken a bone. My closet "brush with death" would have been a sprained wrist, four stitches or perhaps my old driving habits. In the past I imagined giving up would be easy in comparison to living with paralysis, but the fear I felt those seconds or minutes I spent under the water that night changed all that. I felt no peace or comfort when I was drowning. There was no white light or sense of calming. In those few moments, I felt overwhelmed with fear, sadness and fear. It's hard to let go of that fear, especially knowing what I went through in the hospital. The thought of returning to that state terrifies me. I was naive in thinking how easy it would be to just give up. The cliche "ignorance is bliss" rings true when I analyze my thoughts before my injury. There's no way of really knowing how much stress you can handle unless you are faced with it. For me, the experience of coming so close to death has made push to stay alive. My driving force is based on wanting to fix my mistakes and my hope for the future. Every time I think I can't possibly go on another day I try and remind myself of everything I've been through and everything I've somehow overcome.
I feel as though paralysis is the source on ninety percent of my stress and it is frustrating trying to figure out ways to cope. There is no guarantee that my paralysis will ever be cured, therefore I live with the fact that no matter what I do there are certain problems that might not ever go away. That is why I say that I have more stress than the average person. The only true solution would be a cure to paralysis. It is especially maddening when people suggest medication or talk therapy to me. I've done both with little success. I take medication, but still feel depressed and anxious. How can I not, given my condition? Isn't it normal to be bothered by paralysis? Who on earth (of sound mind) would be happy to be sick or have a chronic illness? I think it's only logical that my situation bothers me and find it useless to think I'll ever be completely satisfied this way. If there is no remedy for the source of all my problems, all I can do is find new ways to deal with secondary issues created by the underlying cause. I'm sure most people with chronic illnesses can relate. It's difficult to cope with symptoms or outlying issues, when you know you can't get rid of the root of the problem. It can become so overwhelming at times, because I know no matter how many days I get through, there is another day of the same stuff waiting for me. My paralysis effects everything; until it's cured I will always face certain obstacles and stress.
So many of life's stress factors have solutions or resolve themselves with time. Relationships, financial troubles, raising children and even grief can be worked out over time; the pain dulls or solutions are found. In my situation, there are many stressful things that I need to do just to stay alive. As much as it bothers me, I don't have the luxury of moving on, or getting over it. I'm faced with the consequences of my accident day in and day out. Although some things that used to bother me seem ridiculous to me now, at the time they seemed valid. I try and keep that in mind when I talk with family and friends. I can see how easily someone in my situation could slip into cynicism and bitterness. It's hard to be sympathetic when your problems seem so grave in comparison to the people around you. I can't tell you how often I've thought, "I wish those were my problems." It's at those moments I have to remind myself that most of my friends and family will never truly be able to see life from my perspective and I shouldn't fault them for that. I try and think about how I might have reacted before my accident and try my best to recall my past. I push myself to make an effort to take a genuine interest in my loved ones lives. I value them and don't think it's fair to drag them down with me or belittle their problems (regardless of how insignificant or shallow they might seem to me). No one wants to be around a grouch or someone in a constant state of self pity.
I've found ways to not only cope with my paralysis, but how to mask a lot of what I'm going through. In some respect I feel it's not fair to those around me, even if I start to feel overwhelmed by everything I've kept bottled up. Most times I feel disenchanted and see no point in discussing my problems. The majority of stuff that bothers me is directly related to my paralysis such as, needing help with every single little thing. I never get a break from people and never feel like a truly have privacy. I've been injured now for over four years and still haven't figured a way to deal with needing help with highly personal things, such as going to bathroom, being bathed, fed and dressed. Outwardly, I'm not breaking into tears every morning or going into hysterics, but on the inside there's a torrent of emotions running through me. If I do express my discomfort, most people try and brush it off or down play it like it's no big deal. I understand there aren't many right answers or advice to give. No words can ever make me feel 100% better. In fact, most of the time I find myself getting annoyed and/or frustrated with the person, especially if they are able bodied. My able bodied friends and family sometimes think they can imagine what it's like to be paralyzed, but they can't. It is one of those things that you have to live through to understand. The problem with imagining something is that you are limited to drawing from the experiences you've had. There is no experience you could have that compares to certain aspects of paralysis. Often times I can't even find the words to explain what I'm feeling, because it's unlike anything I ever experienced on my feet. It can be very frustrating, because no matter what I use as a comparison, it's just not the same . Sure, you could try and simulate the experience by restraining your limbs; to experience the discomfort of having to have help, or feel the sense of vulnerability. However, such a simulation doesn't even begin to truly mimic what it's like to be paralyzed. A good example of this is how nurse's aides often have to "ride" in a Hoyer lift to help promote empathy for their patients. Although some people might feel nervous at the thought of being suspended in the air, it's nothing close to what it's like for someone like me. For starters, an able bodied person can grab onto the machine for security. I have no way to stop myself from falling or brace myself if I do fall. Secondly, an able bodied person can feel the sling beneath them. I have no sensation below my chest and therefore, if I can't see what's going on it feels as though the rest of my body does not exist. Not to mention the fact that someone taking part in a simulated exercise knows that there discomfort is only temporary. If I knew for sure that I'd be back on my feet, it'd give me a tremendous boost of strength and motivation. It's the difference of an innocent person serving a short jail sentence and being on death row. In both cases the innocent person is being unfairly punished, but the person with a designated time frame has the advantage of knowing that it's temporary. If I knew the date of when a cure will be found I would have the peace of mind in knowing what I'm up against. A set time frame gives you something to look forward; there is an the end. Even if that magical cure date was beyond my lifetime at least I'd have an answer. My situation overwhelms me at times because of the uncertainty of ever getting cured. Granted, my accident is an example that, despite set plans, no one ever really knows there future. Plans give us the illusion of control over our lives, and there are times when life throws in surprises. However, there are certain definites, just as I know for sure that my birthday will be on July 4th, it would be awesome to know when there will be a cure.
One of the many bad things about stress is that can have a direct impact on your health. Stress, like many emotions, it is not limited to just effecting your mood. I think keeping all of my stress bottled up is having a negative effect on my body. Lately, my aides and I have noticed that I'm losing hair. Having long, thick hair that is prone to knots means I'm accustomed to losing a certain amount everyday, just by brushing it. Recently though, it's been much too much to be normal. I know it could be from a dietary deficiency, but I doubt it. My diet is well rounded with fruits, veggies and protein and it hasn't changed drastically in any way. My medicine and environment are stable, so I'm thinking it's got to be stress related. I've also been battling acne since my accident. My skin used to be near flawless, which I had chalked up to good genes. Now I'm beginning to wonder if other factors (like medicine) were keeping my skin so nice or if the problem is only related to my current situation. I have several theories as to the cause; stress being number one. I have been going to a dermatologist and trying various treatments, but none have been very successful. My body has already been through so many changes because of the paralysis and now it seems I'm creating more problems by stressing out. I know emotion/mood has an effect on health and healing, but it is near impossible for me to eliminate the stress, anxiety or sadness I often feel. My hair and skin are not only proof of stress, they are now also a new source of stress. I feel faced with a double edged sword.
I've decided to attempt to lower my stress level by writing letters to a few people close to me. I think some of the things that are bothering me could have solutions, if the people doing them are willing to compromise with me, or change. Although I don't particularly mind arguing, I'm terrible at approaching situations where I have to tell someone they are doing something that bothers me. I'm fine once the ice is broken, but I struggle to bring up the subject. I have the most difficulty when the issue effects me specifically. In other words, if you did something mean or bothersome to my friend, I have no qualms about opening my mouth immediately. I'm fine at speaking up to help others, but I stink at sticking up for myself. I often just bite my tongue or let the frustration roll off my shoulders. I can forgive easily, so minor annoyances often get overlooked. The problem is, if I ignore or avoid things when they are small, they tend to snowball into something big; making it even harder to address or fix issue. It is the one area that I have a hard time expressing myself. It's especially worst with adults and even more so the closer you are to me (relationship wise). Writing down my thoughts gives me the comfort of being able to say almost anything. I also get satisfaction in knowing I've said everything I wanted to say, without getting interrupted or forgotten. So, I'm hoping to break the ice with a few people, about a few issues that are resolvable. I'm hoping the letters will open up the dialog and that I'm able to get a little relief.
Sunday, December 20, 2009
Holiday Stress & Last Minute Gift Ideas
I’m feeling a bit stressed out, which is pretty normal for me during the holiday season. The holidays bring about so many mixed emotions. This has been a stressful time of the year for me my whole life. Growing up with two sets of parents (both divorced and remarried) can get overwhelming at times. You can’t be at two places at once, so you end up celebrating the same holiday multiple times. The celebrating, food and spending time with the family is always great; it’s the traveling & running around that is exhausting. Just getting to see the whole family can be challenging (for big or divorced families), not to mention attending holiday parties with friends and coworkers or spending time with your significant other’s family. Although I still do enjoy the winter holidays, some years I’ve felt like I needed to take a vacation to recoup from my winter holiday (be it school, college or working as a teacher).
The gift giving factor is what really makes the winter holidays (Hanukkah, Christmas, Kwanza, etc) more stressful. I’m the type of person that loves to shop and when I was still on my feet I’d stay at the mall for hours and get all my Christmas shopping done in one day. I find shopping in the mall less enjoyable since my accident, because it’s much harder to maneuver a wheelchair through big crowds. You would think a wheelchair would make it easier to be noticed and that people would take extra consideration in letting you get through the congestion of shoppers, but I find that most people walk around in a daze or are too focused on themselves to pay attention. Not to mention, people have a tons of bags, boxes and other obstacles to get tangled in. The stores themselves are not really laid out with wheelchair access in mind either and it can be difficult to impossible to pass through narrow rows of merchandise. There are even some stores I don’t even try to enter (like Claire’s) because they are so tiny to begin with and I usually can’t see half the merchandise over people’s heads.
It can get quite expensive when you have to buy for double the amount of people (two sets of parents, four sets of grandparents, siblings, etc). I don’t mind spending money on my loved ones (if I have it). In fact, I rather enjoy gift giving. It’s the process of finding and choosing the right gift for each person that can be a hassle. Having picky or difficult people to buy for can make staying on a budget challenging if their list of wants is small. I’m pretty fortunate in that most people I know are easy to buy for, because they have hobbies or specific interests. Luckily nowadays almost all stores offer online shopping as an alternative. Most websites even let you create wish lists, which is very helpful! Wish lists provide the buyer a range of things to choose from and the receiver still has some element of surprise when they are opening the gift. Wish lists are great because they remove the stress of figuring out things like sizes and colors. These days I do almost all my shopping online instead of going to the mall and wished all my friends & family would send me wish lists.
I tend to wait last minute to shop for other people, because it kills me to wait to give the gifts. If I shopped for Christmas in October, I’d end up buying double; having already given the first set of gifts away. When I was on my feet I could wait until December 22nd and still get everything accomplished. Online shopping requires more time and planning, because you have to consider the time it will take the items to be delivered to you. Naturally, most sites offer fast shipping alternatives, but be ready to pay an arm and a leg for it. I don’t think it’s worth buying something online if I have to pay half or more than the cost of the item itself in shipping fees. Convenience is nice, but it’s absurd to pay double the price of something I could buy around the corner. This year I’m stuck going to the stores, because I’ve procrastinated too long and have yet to buy a single gift for any of the adults in my life (shopping for kids is fun). I’d much prefer doing everything online, but that’s what I get for continuously putting it off.
If you still haven’t tried online shopping, I recommend you do. The important thing to keep in mind when you shop online is keeping your credit card information secure. Only shop on big name websites that represent well known retailers such as: Best Buy, Target, Amazon and ToysRUs. You might find seemingly great deals on smaller websites, but you are taking a big risk trusting “mom & pop” shops with your info. A smart thing to do is set up a PayPal account. PayPal is a service that acts as an intermediary between your bank and the retailer. They keep your info secure and a lot of retailers let you pay using PayPal (even smaller businesses). Try to minimize the number of websites that don’t accept PayPal; the fewer sites that have your info, the better. Most websites let you create an account, which can save your shipping and billing addresses along with your credit card info. I normally create accounts for the convenience of saving addresses and the ability to track my orders. However, I do not recommend saving your credit card information on multiple sites. Most online stores have multiple payment options and you can tailor your account to only save certain information. You can easily keep track of what you buy by having the order confirmations emailed to you or you can print out a paper copy. Online shopping is also a fast and easy way to compare store prices and read reviews on products.
If you are like me and are still looking for ideas and/or still have shopping left to do, I have a few suggestions that might help you out. As I said before, I know how hard it can be to choose the right gift for the right person. It might seem even more difficult when shopping for the people in your life with disabilities. The first obstacle can be the high price of anything labeled for use with people with disabilities. In my experience, I’ve found the equipment and supplies I use are almost always marked higher if they come from a store that is geared to sell to the disabled and/or medical community. It’s a sad fact. In many cases high prices are caused by the need for customized products and/or because manufacturers aren’t producing modalities and equipment on a large scale. That said, there are some really great gifts out there and many of them don’t require specialty shops. Some gift ideas just require a little ingenuity and creative thinking.
Although I chose these gift ideas with the disabled community in mind (spinal cord injuries and paralysis in particular), they are applicable to everyone. Here are a few of my suggestions for this holiday season:
1. I think we all too often forget that during the holidays our focus is supposed to be on the spirit of giving, spending time with loved ones and in many cases, religious traditions. Somehow those aspects of the holidays often get lost in the hustle and bustle of our commercialized society. That said, I think the very best gift you can give is a donation to a charity in the name or in honor of the person you’re buying for. For someone such as myself (with a chronic disease or permanent disability), I can’t think of a better gift. Giving to charities that support causes that the receiver deems important is like giving a double gift. You’re giving the hope to the person you gift and you give support to the cause itself. Most “causes” have official groups or organizations that raise funds for research for cures, awareness and/support. I suggest giving to well known organizations, such as The Christopher & Dana Reeve Foundation. There are even some websites that allow you to prioritize causes that are important to you and provide links to reputable charities; that way gift givers know exactly what causes/issues matter to you. www.giftback.com , www.justgive.org and www.heifer.org are three great examples of charitable donation gifting sites.
2. One of the hot items this year is e-readers. If you’re not familiar with the term, an e-reader or e-book is an electronical device that lets you store hundreds (even thousands) of books, magazines, journals and newspapers into a very convenient and small amount of space. The e-readers that are for sale all range a bit in size from about six to nine inches in height, five to seven inches wide and under an inch thick. They are incredibly light; usually weighing less than an average hardcover book. The big three right now are: Amazon’s Kindle, Barnes & Noble’s Nook and the Sony Reader. All three e-readers are fairly easy to use and can even be controlled using a mouth stick. All three e-readers allow you to purchase & download books using Wi-Fi, but you need to check coverage areas of each company before you buy. All of the readers use e-ink technology, which mimics the look of paper and doesn’t have glare issues like you’d have reading from a PC. You can even jot down annotations & highlight words in e-books and they all include built in dictionaries. While they all do relatively the same stuff, there are a few key differences you should consider.
• The Kindle has been around the longest and it currently comes in two models. The KindleDX is larger than most e-books at 9 inches, but it is still incredibly light & thin. Kindle DX gives you the option to read horizontally or vertically. Its unique selling point is its text to speech figure that can “read” text aloud. Unfortunately, the TTS (text to speech) feature is not compatible with all books. Some authors complained that it was discouraging consumers from buying audio books. I disagree. There is no comparison to a human reader versus a computer reader. TTS is nice for someone such as myself, because I can listen to books in bed without setting up all the equipment I need to read a traditional book. TTS doesn’t provide the tone or inflection a human reader could, nor does it understand the context of the words it reads. I view TTS as a convenient alternative to reading (especially for someone without hand function).Audio books are available as well if you get tired of listening to everything in a monotone, robotic voice. Kindles are only available through Amazon’s website, so your only way to test one out is to order one. You also need to buy all of your books and periodicals through Amazon. The nice thing is that the Kindle is ready to use straight out of the box. You don’t need a PC to access the web or use to the Kindle. There is a basic web browser included. It also includes 3G global coverage. There are no fees or contracts and Amazon will back up your books on their site. A couple of other selling points include: a built in PDF readers (or converter depending on which model), personal document service, Wikipedia, button controls for both left and right handed people and compatible applications for the iPhone and Blackberry.
• The Sony Reader comes in three models. The Pocket Edition , Touch Edition & Daily Edition, which is a bit larger than the first two. The Daily Edition is the closest in comparison to Kindle DX. It can be read horizontal or vertically and has 3G wireless capabilities. The unique selling point against the Kindle was its touch screen controls. However, the Nook also has touch controls and can compete directly against Sony Reader. There aren’t many unique things about the Sony Reader, but unlike the Kindle, you can see them in person and try them out in various stores. The other nice thing about the Sony Readers is the wide range of sites from which you can purchase books. You can find many books for cheaper prices or even for free. Sony gives you more buying options, whereas its two competitors make you buy books through them.
• The Barnes & Noble Nook was only just released (December, 2009), so there are still a few kinks that might need to be fixed and not many people have one yet. The Nook is available to try in person and the Wi-Fi service is free for all Nook owners, within B&N stores. That said, the Nook has a few unique features that make it stand out. There are two touch screens on the Nook; the upper area is for reading text and uses e-ink technology, while the bottom features a LCD scroll bar with color pictures of book covers (similar to iPods that can display album covers). The second feature exclusive to the Nook is the ability to share books with other Nook users. The LendMe feature is a nice option that many book lovers will enjoy because it allows them to share favorite e-books just the same as they would a paper copy.
My descriptions are good to get you started, but they are just short overviews. I suggest you visit each website and do a bit of comparison shopping yourself (www.amazon.com , www.sonystyle.com & www.barnesandnoble.com/nook ). Try reading reviews from nonbiased websites (www.cnet.com or www.pcmag.com are good) as well, not just the manufacturer’s websites. I’m leaning towards the Kindle for myself. I really like the TTS feature. The touch screen navigation is the only thing the Kindle e-books are lacking and I’m sure whenever Amazon decides to release a newer model it will include a touch screen as well. They are all a bit pricey (around $300), so you’ll want to weigh all the options. I’m an avid reader and although I love my books, they take up a ton of space. I think it’s pretty amazing to able to have a virtual library of books that can travel with you wherever you go! As a bonus, e-books are “green” in that they save paper and space. I think e-books are great gifts for anyone.
3. Getting dressed can be stressful for me, as I need help and have safety issues to consider. I tend to wear easy stuff like sweats and t-shirts if I’m just going to be in my apartment. I’d compare my style now (at home) to how I used to dress if I was going to the gym. I try to make life a little easier for my aides by only wearing my “normal” clothes when I have guests or go out. Much of my clothes from before my accident (pants especially) are no longer appropriate for me and I’ve given bags & bags full to charity. Being paralyzed and confined to a chair, I have to consider ways that clothes might damage my skin or create problems that I can’t feel. Poor circulation can create swelling, so tight or form fitting clothes can create pressure sores and/or constrict my catheter. I stay away from clothes with buttons, rhinestones, zippers or beading on the back, because leaning up against those things can break down skin quickly and create sores.
I can’t raise my arms over my head, which poses a problem for getting on certain shirts and jackets. Although the clothes technically fit me, most are not designed with disabilities in mind (it’s assumed that adults put their own clothes on).That doesn’t mean I have to wear hospital gowns or pajamas all the time. I can still wear trendy clothes as long as I keep those issues in mind and buy a bigger size if I’m unsure. If you are buying clothes for someone in a wheelchair you should keep the issues I’ve mentioned in mind. You might also want to check out specialty shops that sell clothes designed exclusively for people who use wheelchairs. I haven’t come across many that sell trendy or youthful styles (most are designed for the elderly), but you can find basics. www.professionalfit.com is one of the better sites I found.
4. My last gift idea is for the gamers in your life. Just because someone has a disability doesn’t necessarily mean they can’t enjoy the computer or video games. I was big into gaming before my accident and was really bummed out that I wouldn’t be able to play games again; after my accident, since I have no control below my chest. I only have use of my neck, shoulders and biceps. However, I’ve learned and/or invented ways that allow me still play games using a mouth stick. Luckily, there are tons of gaming options out there and hands are not necessarily required! Nintendo has developed some pretty innovative games/gaming systems that don’t rely solely on mashing buttons. Depending on the person’s needs and abilities, Nintendo Wii can be adapted to use with your arms, head or sip and puff. There are even sites that customize controllers to make it easier for people with limited hand function (www.gimpgear.us & www.quadcontrol.com). Nintendo DS is a portable system that has dozens of touch based games. You can figure out the game controls by reading reviews online (www.ign.com). Sometimes the back of the game box or online store description give enough information to determine if it’s touch based. I own over 30 Nintendo DS games that I’ve been able to play (and beat in many cases) by using a mouth stick. Ordinarily, a person with normal hand function would use the stylus stick that comes with the DS, but it’s a bit too thin and way too short to use by mouth. I adapted a mouth stick by adding a knitting needle inside of it, so that it has a pointy tip like a stylus, but is long enough to use. Using a mouth stick also gives me better control since it is thicker than a regular stylus and less flimsy.
As for the computer, there are hundreds of games that only require a mouse to play. I have a trackball mouse, which allows me to move just the ball and not the entire mouse itself (I use Kensington’s Orbit Optical Trackball, which only costs about $30). You can purchase games online or buy the software in stores. Most games in the following genres can be played by mouth stick: match 3 (such as Bejeweled), Mahjong, hidden objects (such the Huntsville Mystery Case Files series), simulation (such as Sims 3) and time management (such as Farmville). There are emulation programs that let you play console games (Xbox, PS3 & Gamecube for example) on your PC and users can customize key settings. Most console emulators are not licensed by the gaming companies, so I’d avoid going that route. Lastly, there are some pretty neat gadgets out there that can be used by people with little to no motor function; such as someone with a high level spinal cord injury like Christopher Reeve. These gadgets use eye movements or speech recognition to control a wide range of functions on the computer (www.nuance.com & www.eyegaze.com are two examples). You can surf the web and write with both types of equipment/software and even create art with the optical devices. This type of technology can be a gift of freedom to those people who are otherwise “locked in.”
I hope my tips are helpful. Even if you’re done with all your holiday shopping this year (you’re lucky!), you can use these ideas for any gift giving occasion. I will be braving the mall and the crowds this year (and possibly snow). Try and choose meaningful & practical gifts that fit in your budget and remember that the presents aren’t the most important part of holidays. Wishing everyone a happy and safe holiday season!
The gift giving factor is what really makes the winter holidays (Hanukkah, Christmas, Kwanza, etc) more stressful. I’m the type of person that loves to shop and when I was still on my feet I’d stay at the mall for hours and get all my Christmas shopping done in one day. I find shopping in the mall less enjoyable since my accident, because it’s much harder to maneuver a wheelchair through big crowds. You would think a wheelchair would make it easier to be noticed and that people would take extra consideration in letting you get through the congestion of shoppers, but I find that most people walk around in a daze or are too focused on themselves to pay attention. Not to mention, people have a tons of bags, boxes and other obstacles to get tangled in. The stores themselves are not really laid out with wheelchair access in mind either and it can be difficult to impossible to pass through narrow rows of merchandise. There are even some stores I don’t even try to enter (like Claire’s) because they are so tiny to begin with and I usually can’t see half the merchandise over people’s heads.
It can get quite expensive when you have to buy for double the amount of people (two sets of parents, four sets of grandparents, siblings, etc). I don’t mind spending money on my loved ones (if I have it). In fact, I rather enjoy gift giving. It’s the process of finding and choosing the right gift for each person that can be a hassle. Having picky or difficult people to buy for can make staying on a budget challenging if their list of wants is small. I’m pretty fortunate in that most people I know are easy to buy for, because they have hobbies or specific interests. Luckily nowadays almost all stores offer online shopping as an alternative. Most websites even let you create wish lists, which is very helpful! Wish lists provide the buyer a range of things to choose from and the receiver still has some element of surprise when they are opening the gift. Wish lists are great because they remove the stress of figuring out things like sizes and colors. These days I do almost all my shopping online instead of going to the mall and wished all my friends & family would send me wish lists.
I tend to wait last minute to shop for other people, because it kills me to wait to give the gifts. If I shopped for Christmas in October, I’d end up buying double; having already given the first set of gifts away. When I was on my feet I could wait until December 22nd and still get everything accomplished. Online shopping requires more time and planning, because you have to consider the time it will take the items to be delivered to you. Naturally, most sites offer fast shipping alternatives, but be ready to pay an arm and a leg for it. I don’t think it’s worth buying something online if I have to pay half or more than the cost of the item itself in shipping fees. Convenience is nice, but it’s absurd to pay double the price of something I could buy around the corner. This year I’m stuck going to the stores, because I’ve procrastinated too long and have yet to buy a single gift for any of the adults in my life (shopping for kids is fun). I’d much prefer doing everything online, but that’s what I get for continuously putting it off.
If you still haven’t tried online shopping, I recommend you do. The important thing to keep in mind when you shop online is keeping your credit card information secure. Only shop on big name websites that represent well known retailers such as: Best Buy, Target, Amazon and ToysRUs. You might find seemingly great deals on smaller websites, but you are taking a big risk trusting “mom & pop” shops with your info. A smart thing to do is set up a PayPal account. PayPal is a service that acts as an intermediary between your bank and the retailer. They keep your info secure and a lot of retailers let you pay using PayPal (even smaller businesses). Try to minimize the number of websites that don’t accept PayPal; the fewer sites that have your info, the better. Most websites let you create an account, which can save your shipping and billing addresses along with your credit card info. I normally create accounts for the convenience of saving addresses and the ability to track my orders. However, I do not recommend saving your credit card information on multiple sites. Most online stores have multiple payment options and you can tailor your account to only save certain information. You can easily keep track of what you buy by having the order confirmations emailed to you or you can print out a paper copy. Online shopping is also a fast and easy way to compare store prices and read reviews on products.
If you are like me and are still looking for ideas and/or still have shopping left to do, I have a few suggestions that might help you out. As I said before, I know how hard it can be to choose the right gift for the right person. It might seem even more difficult when shopping for the people in your life with disabilities. The first obstacle can be the high price of anything labeled for use with people with disabilities. In my experience, I’ve found the equipment and supplies I use are almost always marked higher if they come from a store that is geared to sell to the disabled and/or medical community. It’s a sad fact. In many cases high prices are caused by the need for customized products and/or because manufacturers aren’t producing modalities and equipment on a large scale. That said, there are some really great gifts out there and many of them don’t require specialty shops. Some gift ideas just require a little ingenuity and creative thinking.
Although I chose these gift ideas with the disabled community in mind (spinal cord injuries and paralysis in particular), they are applicable to everyone. Here are a few of my suggestions for this holiday season:
1. I think we all too often forget that during the holidays our focus is supposed to be on the spirit of giving, spending time with loved ones and in many cases, religious traditions. Somehow those aspects of the holidays often get lost in the hustle and bustle of our commercialized society. That said, I think the very best gift you can give is a donation to a charity in the name or in honor of the person you’re buying for. For someone such as myself (with a chronic disease or permanent disability), I can’t think of a better gift. Giving to charities that support causes that the receiver deems important is like giving a double gift. You’re giving the hope to the person you gift and you give support to the cause itself. Most “causes” have official groups or organizations that raise funds for research for cures, awareness and/support. I suggest giving to well known organizations, such as The Christopher & Dana Reeve Foundation. There are even some websites that allow you to prioritize causes that are important to you and provide links to reputable charities; that way gift givers know exactly what causes/issues matter to you. www.giftback.com , www.justgive.org and www.heifer.org are three great examples of charitable donation gifting sites.
2. One of the hot items this year is e-readers. If you’re not familiar with the term, an e-reader or e-book is an electronical device that lets you store hundreds (even thousands) of books, magazines, journals and newspapers into a very convenient and small amount of space. The e-readers that are for sale all range a bit in size from about six to nine inches in height, five to seven inches wide and under an inch thick. They are incredibly light; usually weighing less than an average hardcover book. The big three right now are: Amazon’s Kindle, Barnes & Noble’s Nook and the Sony Reader. All three e-readers are fairly easy to use and can even be controlled using a mouth stick. All three e-readers allow you to purchase & download books using Wi-Fi, but you need to check coverage areas of each company before you buy. All of the readers use e-ink technology, which mimics the look of paper and doesn’t have glare issues like you’d have reading from a PC. You can even jot down annotations & highlight words in e-books and they all include built in dictionaries. While they all do relatively the same stuff, there are a few key differences you should consider.
• The Kindle has been around the longest and it currently comes in two models. The KindleDX is larger than most e-books at 9 inches, but it is still incredibly light & thin. Kindle DX gives you the option to read horizontally or vertically. Its unique selling point is its text to speech figure that can “read” text aloud. Unfortunately, the TTS (text to speech) feature is not compatible with all books. Some authors complained that it was discouraging consumers from buying audio books. I disagree. There is no comparison to a human reader versus a computer reader. TTS is nice for someone such as myself, because I can listen to books in bed without setting up all the equipment I need to read a traditional book. TTS doesn’t provide the tone or inflection a human reader could, nor does it understand the context of the words it reads. I view TTS as a convenient alternative to reading (especially for someone without hand function).Audio books are available as well if you get tired of listening to everything in a monotone, robotic voice. Kindles are only available through Amazon’s website, so your only way to test one out is to order one. You also need to buy all of your books and periodicals through Amazon. The nice thing is that the Kindle is ready to use straight out of the box. You don’t need a PC to access the web or use to the Kindle. There is a basic web browser included. It also includes 3G global coverage. There are no fees or contracts and Amazon will back up your books on their site. A couple of other selling points include: a built in PDF readers (or converter depending on which model), personal document service, Wikipedia, button controls for both left and right handed people and compatible applications for the iPhone and Blackberry.
• The Sony Reader comes in three models. The Pocket Edition , Touch Edition & Daily Edition, which is a bit larger than the first two. The Daily Edition is the closest in comparison to Kindle DX. It can be read horizontal or vertically and has 3G wireless capabilities. The unique selling point against the Kindle was its touch screen controls. However, the Nook also has touch controls and can compete directly against Sony Reader. There aren’t many unique things about the Sony Reader, but unlike the Kindle, you can see them in person and try them out in various stores. The other nice thing about the Sony Readers is the wide range of sites from which you can purchase books. You can find many books for cheaper prices or even for free. Sony gives you more buying options, whereas its two competitors make you buy books through them.
• The Barnes & Noble Nook was only just released (December, 2009), so there are still a few kinks that might need to be fixed and not many people have one yet. The Nook is available to try in person and the Wi-Fi service is free for all Nook owners, within B&N stores. That said, the Nook has a few unique features that make it stand out. There are two touch screens on the Nook; the upper area is for reading text and uses e-ink technology, while the bottom features a LCD scroll bar with color pictures of book covers (similar to iPods that can display album covers). The second feature exclusive to the Nook is the ability to share books with other Nook users. The LendMe feature is a nice option that many book lovers will enjoy because it allows them to share favorite e-books just the same as they would a paper copy.
My descriptions are good to get you started, but they are just short overviews. I suggest you visit each website and do a bit of comparison shopping yourself (www.amazon.com , www.sonystyle.com & www.barnesandnoble.com/nook ). Try reading reviews from nonbiased websites (www.cnet.com or www.pcmag.com are good) as well, not just the manufacturer’s websites. I’m leaning towards the Kindle for myself. I really like the TTS feature. The touch screen navigation is the only thing the Kindle e-books are lacking and I’m sure whenever Amazon decides to release a newer model it will include a touch screen as well. They are all a bit pricey (around $300), so you’ll want to weigh all the options. I’m an avid reader and although I love my books, they take up a ton of space. I think it’s pretty amazing to able to have a virtual library of books that can travel with you wherever you go! As a bonus, e-books are “green” in that they save paper and space. I think e-books are great gifts for anyone.
3. Getting dressed can be stressful for me, as I need help and have safety issues to consider. I tend to wear easy stuff like sweats and t-shirts if I’m just going to be in my apartment. I’d compare my style now (at home) to how I used to dress if I was going to the gym. I try to make life a little easier for my aides by only wearing my “normal” clothes when I have guests or go out. Much of my clothes from before my accident (pants especially) are no longer appropriate for me and I’ve given bags & bags full to charity. Being paralyzed and confined to a chair, I have to consider ways that clothes might damage my skin or create problems that I can’t feel. Poor circulation can create swelling, so tight or form fitting clothes can create pressure sores and/or constrict my catheter. I stay away from clothes with buttons, rhinestones, zippers or beading on the back, because leaning up against those things can break down skin quickly and create sores.
I can’t raise my arms over my head, which poses a problem for getting on certain shirts and jackets. Although the clothes technically fit me, most are not designed with disabilities in mind (it’s assumed that adults put their own clothes on).That doesn’t mean I have to wear hospital gowns or pajamas all the time. I can still wear trendy clothes as long as I keep those issues in mind and buy a bigger size if I’m unsure. If you are buying clothes for someone in a wheelchair you should keep the issues I’ve mentioned in mind. You might also want to check out specialty shops that sell clothes designed exclusively for people who use wheelchairs. I haven’t come across many that sell trendy or youthful styles (most are designed for the elderly), but you can find basics. www.professionalfit.com is one of the better sites I found.
4. My last gift idea is for the gamers in your life. Just because someone has a disability doesn’t necessarily mean they can’t enjoy the computer or video games. I was big into gaming before my accident and was really bummed out that I wouldn’t be able to play games again; after my accident, since I have no control below my chest. I only have use of my neck, shoulders and biceps. However, I’ve learned and/or invented ways that allow me still play games using a mouth stick. Luckily, there are tons of gaming options out there and hands are not necessarily required! Nintendo has developed some pretty innovative games/gaming systems that don’t rely solely on mashing buttons. Depending on the person’s needs and abilities, Nintendo Wii can be adapted to use with your arms, head or sip and puff. There are even sites that customize controllers to make it easier for people with limited hand function (www.gimpgear.us & www.quadcontrol.com). Nintendo DS is a portable system that has dozens of touch based games. You can figure out the game controls by reading reviews online (www.ign.com). Sometimes the back of the game box or online store description give enough information to determine if it’s touch based. I own over 30 Nintendo DS games that I’ve been able to play (and beat in many cases) by using a mouth stick. Ordinarily, a person with normal hand function would use the stylus stick that comes with the DS, but it’s a bit too thin and way too short to use by mouth. I adapted a mouth stick by adding a knitting needle inside of it, so that it has a pointy tip like a stylus, but is long enough to use. Using a mouth stick also gives me better control since it is thicker than a regular stylus and less flimsy.
As for the computer, there are hundreds of games that only require a mouse to play. I have a trackball mouse, which allows me to move just the ball and not the entire mouse itself (I use Kensington’s Orbit Optical Trackball, which only costs about $30). You can purchase games online or buy the software in stores. Most games in the following genres can be played by mouth stick: match 3 (such as Bejeweled), Mahjong, hidden objects (such the Huntsville Mystery Case Files series), simulation (such as Sims 3) and time management (such as Farmville). There are emulation programs that let you play console games (Xbox, PS3 & Gamecube for example) on your PC and users can customize key settings. Most console emulators are not licensed by the gaming companies, so I’d avoid going that route. Lastly, there are some pretty neat gadgets out there that can be used by people with little to no motor function; such as someone with a high level spinal cord injury like Christopher Reeve. These gadgets use eye movements or speech recognition to control a wide range of functions on the computer (www.nuance.com & www.eyegaze.com are two examples). You can surf the web and write with both types of equipment/software and even create art with the optical devices. This type of technology can be a gift of freedom to those people who are otherwise “locked in.”
I hope my tips are helpful. Even if you’re done with all your holiday shopping this year (you’re lucky!), you can use these ideas for any gift giving occasion. I will be braving the mall and the crowds this year (and possibly snow). Try and choose meaningful & practical gifts that fit in your budget and remember that the presents aren’t the most important part of holidays. Wishing everyone a happy and safe holiday season!
Wednesday, December 9, 2009
Hacked
I’ve been playing this online game called MapleStory (MS for short) since 2006. A friend introduced me to MS when I was still living in the nursing home. I was big into gaming before my accident & it stinks that I can no longer play 95% of my console games. At the time of my accident I had Nintendo Gameboy SP, Gamecube & Xbox. Since I can’t use my hands I’m limited to hitting one key at a time with my mouth stick. Most modern games require multiple button combos to play, so when I found MS it was awesome to be able to adapt the controls and be able to play with my mouth.
For those of you that aren’t gamers, MS is what you call a MMORPG (Massive Multiplayer Online Role Playing Game). MMORPGs consist of thousands to millions of players. You create a character and name and you can play with and interact with other real life people. Most MMORPG have loose open ended storylines that allow you to choose from a variety of things to do and allow you to customize your experience. The game worlds are online social communities which allow you to meet new people, play with friends and work as a team, to meet objectives, win achievements and/or complete quests. Typically there are specific class types, which you choose from early on such as; warrior, mage, archer, bowman, ninja and pirate. Some games offer subclasses as well. Your class determines what kind of equips, weapons and items you’ll need and which skills you’ll acquire. You advance in level and skills through gaining experience, which is usually given in points that correlate to the monsters you kill or as rewards for completing quests. Each subsequent level requires more experience points than the last level and special abilities and skills are usually increased with each level. Some MMORPGs charge subscription fees to play (like World of War Craft), while others offer free access. Although MS is free to play, there are tons of optional items you can buy to enhance your game play. In both types of MMORPG you gain an in-game currency, which you need to buy equips, weapons and items. In MS the game currency is called “meso.” In a free access game like MS it becomes increasingly harder to rely solely on game currency alone, so many people buy the optional currency to take advantage of the specialty items. In MS the cash shop items are purchased with “NX” which you can buy on the company game site or in gift card form.
Maple Story is unique in that it is a 2D side scrolling format; similar to the old 16bit systems, like SNES and Sega Genesis. Its cute anime inspired look and overall game design make it a family friendly game. The monsters and environments are adorable (most) and although you kill monsters, there isn’t the guts, gore and realism of other contemporary games. For the most part teamwork is promoted over competition, as there is little player versus player game play.
As I mentioned before, I was still living in the nursing home when I started playing MS. My time spent at the nursing home was the hardest and darkest period of my life. I was extremely depressed. Maple Story provided me with a much needed escape from reality. As corny as it sounds, MS played a huge role in helping me retain my sanity that first year post accident. It was a distraction from my sad situation. It gave me the opportunity to meet new people and hang out with friends, without ever leaving my room. In Maple Story I am the same as everyone else; no one can tell I play with a mouth stick unless I choose to tell them. Given my situation, it’s a good feeling to be able to fit in and feel equal to everyone else. MS gave me a few hours every day where I could escape reality and not focus so much on my sadness.
Gaming can be very addictive and there was a time when I played MS at least five or six hours every day. I don’t play nearly as much now, but it is still an enjoyable part of my life and I often use my time online to simply socialize. I’ve met some wonderful friends through MS, from all over the country (as well as a few other countries) that I would’ve never met otherwise. I have a lot of free time, being unemployed. Since I’ve been back in my own apartment I’ve become more involved with advocacy work, for finding a cure to paralysis. I’ve had opportunities to exhibit my art and have to split my time in the chair between work & play, so to speak. Overall, if I were to calculate all the time I’ve spent playing MS this past 3 ½ years, I’m sure I’ve easily invested several weeks of my life online. That probably seems excessive, but you have to keep in mind that I have way more free time than the average person and the first year I played I used MS as an escape. Being newly paralyzed and living in a nursing facility is a reality I’m sure anyone would like to escape.
I know a couple of people that play MS without spending money on NX, but on a whole, I’d say the vast majority of players invest in NX. It is near impossible to keep up with friends (level and skill) without NX. When I first started playing in ’06 the game environment was much smaller and most NX items were just covers for in game equips and weapons that didn’t have a functional purpose; purely cosmetic. As the game has grown, so has the cash shop. There are now certain aspects of the game that can only be accessed with NX (such as Amoria party quest). Most NX items expire in 90 days, so if it’s something you feel you need you basically end up spending what you might spend on subscription to other games. Since I can only hit one key at a time with my stick it has become increasingly more difficult to play without NX. There are certain items which I buy regularly to be able to play on par with traditional players (people that play with 10 working fingers). I rely heavily on my pet and pet equips to pick up items, mesos and use potions. If I had to pick up items myself or heal myself it would be too frustrating to play once I reach a certain point. Fighting monsters gets harder with each level and I can’t hit two keys at a time, so without NX items I’d have to constantly switch between attacking and healing. Not only would it slow me down, it would force me to waste tons of mesos on extra potions. Without a pet, I’d die very often, which is frustrating and wastes time and experience points. I keep a regular stock of safety charms; in the event I do die my charm saves me from losing experience. At high levels (120+ out of 200) it can take hours, if not days to gain a level, so if you die without a charm you waste a significant amount of time. There are special tickets which double points and drops. I buy double experience regularly. I level much slower than most players as is, so 2xs experience helps me to keep up with friends. On average, I spend $40-$60 every 90 days, which is comparable to subscription fees. There are times where I’ve been playing more often and I tend to spend even more during those periods. I like NX items; they make the game more enjoyable for me. On a whole, I don’t mind buying NX. I look at buying NX like buying console games, which I used to spend just as much on, if not more.
You gain game currency (mesos in MapleStory) by killing monsters, doing quests and selling rare game items. Many people (including me) make tons of mesos selling equips, scrolls and rare items. Some rare items are monster drops, while others are won in gachapon (a lottery type game feature which requires NX tickets to play); both methods rely solely on luck. Rare items and good equips (give high status boosts) can cost several hundred million mesos! Since the prices are set by players the prices/value of items fluctuates. You also use mesos to buy potions to heal or boost stats, as well as use certain in-game services, such as; transportation between areas and item creation. I’ve easily made and spent billions of meso over the past several years. I’ve had a few lucky sales (most recently I sold an elemental wand for close to 900mil meso) which in turn, allowed me to buy really good equips and rare collector items like chairs. My account consists of a 4th job level hero (133/200), 3rd job level priest (114/200), two 2nd job characters and a low level character for storage.
The difference in buying a game outright versus subscribing to game access or buying digital items is that there is a much higher risk of losing your investment with online games. I can hold a Gameboy DS game in my hands. I know my console games are here, safe in my home, available to use at anytime and only cost me a onetime fee. Since I started playing MS I’ve easily invested hundreds (maybe even over one thousand) of dollars over the past 3-4 years. Again, that might seem exorbitant to a non-gamer, but keep in mind that console game systems cost $200-400 for the system and $20-60 per game. The good news with console game systems is that you can trade them in for a little cash towards a newer model and short of a burglary on my home, my investment is safe and sound.
Maple Story is the first and only MMORPG I’ve ever played. It is also the first online game I’ve invested real money in (buying NX). In terms of overall investment, I’ve dedicated almost 4 years of time and had built up an impressive collection of equips and items. I’ve always known that hackers existed in MS. In fact, they were everywhere when I first started playing. You could see them fighting with no damage, vacking all the monsters and items off of map, botting or stealing drops. My second year playing there was a massive hack of most guilds, in which most guilds in my server (Windia) were disbanded. Since the guild hack I’ve been paranoid to accept trade requests, I avoid hanging out in the free market and I disable my chat and trade abilities. MapleStory security has improved a lot since I began playing and I actively take my own precautions. At least six months to a year ago I switched from using Internet Explorer to Mozilla Firefox because I read about hack threats and a few friends suggested the switch as well. I’ve changed my password and pin over time and I stay away from sketchy websites. I seldom use instant messages & when I do it’s with people I know. I don’t add random buddy requests. I have a pop-up blocker and subscribe to Trend Micro antivirus software, which in theory, gives me my own firewall and protection.
All that said, I sign in to play MS today, only to discover I’ve somehow been hacked. Needless to say, I’m devastated. I could see if I was completely naïve and didn’t take any proactive steps to protect myself; the fact that I do and yet I still got hacked makes me furious as well as crushed. How much more do I have to do to protect myself? What is my antivirus doing? It’s designed to provide me with “internet security,” but given this incident, clearly my information is not secure. Putting the time factor aside, the hacker stripped my account clean off any/all equips worth meso, including (off the top of my head because 1- I didn’t keep a running inventory of my things, 2-I’m too flustered at the moment to try and make a comprehensive list & 3- It’s highly doubtful Nexon will reimburse or return anything); two devil sunrise swords (mine being 116attack), toy maker equips, round pink chair, Olivia chair, countless scrolls, all the inner tubes, another 100+ sword, all the holiday even equips I collected (which is almost all of them since Halloween ’06), priest equips that gave me +50int stat boost and the 700mil mesos I had in my storage. So in essence, I was robbed of at least $300 in permanent NX items/modifications, easily 1-2bil mesos worth of equips and 700mil in fluid mesos.
I sit here scratching my head at how I was hacked and whether or not the theft will only include my MS account. Should I be panicking because I paid bills online today? Are my bank accounts next? I feel overloaded of mixed emotions and many questions. Most importantly, is the invasion over? Although they might seem like pointless pixels to some, I was robbed of items that were rightfully mine. Unlike a house robbery or mugging, there is no insurance to cover my virtual property. I feel just as violated. It doesn’t matter that the stolen goods were virtual. They were my equips, my items, my account; paid for with actual time and money. What if anything can be done? I’m going to report it to Nexon (company that owns MS), but what will they do about it? Given how easy it is to trade, drop or sell items, is there any way to trace my things? Even if they could find all my things, what happens to the person that buys them thinking the seller is a legit player? Will they return my 700mil mesos, if nothing else? How can I prove what I lost? Then of course there’s the bigger concern of all the other potential info and virtual things I own. Why is it that I use a paid antivirus program and hackers still broke through?
I was on MS just last week and all was well. Whenever the account was hacked has got to be in the last 10 days (at most). In terms of my actions, the only thing I can come up with is the fact that I used Internet Explorer this past week. The Trend Micro software and a couple other programs use it as a default browser and a couple of flash games I like work better. I did a manual scan (right after I discovered I’d been hacked) & sure enough, it found a bunch of cookies; thanks to Explorer. Why is it that threatening things are blocked on Mozilla and get through on Explorer? I’d gladly take Explorer off my computer, but I tried that once in the past & Windows did not react kindly. Besides, the damage is done.
This whole experience has left me angry & feeling vulnerable. It saddens me to quit playing MapleStory. I’ve had a lot of fun playing. I’ve seen dozens of players come and go these past four years. If my buddy list, guilds and general experience are representative of the MS community, I’d say I’m one of the few (out of millions) that have stayed relatively active for that long. Nexon will be losing a reliable, dedicated customer; whether or not they care is questionable. I’m wondering what to do next. Regardless that it’s a bunch of pixels, it was a collection of things I worked hard to get (Hard in terms of gaming; I realize it seems trivial in terms of life and importance in general.). Legally speaking, I paid for quite a bit of it with real money. With everything I’ve been through in my life; divorced parents, the death of my sister, my accident and subsequent paralysis, this doesn’t rate as super high in terms of trauma. It is the principle. MapleStory has played an important role in my life post accident and everything taken represents a collection of things that has given me a bit of happiness, despite my lowest times. It’s not the first time important things have been stolen from me. Lord knows, my accident robbed me of an entirely different life.
The computer empowers me and gives me freedoms to control my personal info, shopping, banking, socializing, advocacy and bill payment. If I can’t trust “secure” sites like Facebook, Yahoo, Best Buy, Bank of America or Internet Explorer at all, how can I safely use the internet? I’m shaken, disappointed and confused on where to go from here, in terms of my virtual life.
For those of you that aren’t gamers, MS is what you call a MMORPG (Massive Multiplayer Online Role Playing Game). MMORPGs consist of thousands to millions of players. You create a character and name and you can play with and interact with other real life people. Most MMORPG have loose open ended storylines that allow you to choose from a variety of things to do and allow you to customize your experience. The game worlds are online social communities which allow you to meet new people, play with friends and work as a team, to meet objectives, win achievements and/or complete quests. Typically there are specific class types, which you choose from early on such as; warrior, mage, archer, bowman, ninja and pirate. Some games offer subclasses as well. Your class determines what kind of equips, weapons and items you’ll need and which skills you’ll acquire. You advance in level and skills through gaining experience, which is usually given in points that correlate to the monsters you kill or as rewards for completing quests. Each subsequent level requires more experience points than the last level and special abilities and skills are usually increased with each level. Some MMORPGs charge subscription fees to play (like World of War Craft), while others offer free access. Although MS is free to play, there are tons of optional items you can buy to enhance your game play. In both types of MMORPG you gain an in-game currency, which you need to buy equips, weapons and items. In MS the game currency is called “meso.” In a free access game like MS it becomes increasingly harder to rely solely on game currency alone, so many people buy the optional currency to take advantage of the specialty items. In MS the cash shop items are purchased with “NX” which you can buy on the company game site or in gift card form.
Maple Story is unique in that it is a 2D side scrolling format; similar to the old 16bit systems, like SNES and Sega Genesis. Its cute anime inspired look and overall game design make it a family friendly game. The monsters and environments are adorable (most) and although you kill monsters, there isn’t the guts, gore and realism of other contemporary games. For the most part teamwork is promoted over competition, as there is little player versus player game play.
As I mentioned before, I was still living in the nursing home when I started playing MS. My time spent at the nursing home was the hardest and darkest period of my life. I was extremely depressed. Maple Story provided me with a much needed escape from reality. As corny as it sounds, MS played a huge role in helping me retain my sanity that first year post accident. It was a distraction from my sad situation. It gave me the opportunity to meet new people and hang out with friends, without ever leaving my room. In Maple Story I am the same as everyone else; no one can tell I play with a mouth stick unless I choose to tell them. Given my situation, it’s a good feeling to be able to fit in and feel equal to everyone else. MS gave me a few hours every day where I could escape reality and not focus so much on my sadness.
Gaming can be very addictive and there was a time when I played MS at least five or six hours every day. I don’t play nearly as much now, but it is still an enjoyable part of my life and I often use my time online to simply socialize. I’ve met some wonderful friends through MS, from all over the country (as well as a few other countries) that I would’ve never met otherwise. I have a lot of free time, being unemployed. Since I’ve been back in my own apartment I’ve become more involved with advocacy work, for finding a cure to paralysis. I’ve had opportunities to exhibit my art and have to split my time in the chair between work & play, so to speak. Overall, if I were to calculate all the time I’ve spent playing MS this past 3 ½ years, I’m sure I’ve easily invested several weeks of my life online. That probably seems excessive, but you have to keep in mind that I have way more free time than the average person and the first year I played I used MS as an escape. Being newly paralyzed and living in a nursing facility is a reality I’m sure anyone would like to escape.
I know a couple of people that play MS without spending money on NX, but on a whole, I’d say the vast majority of players invest in NX. It is near impossible to keep up with friends (level and skill) without NX. When I first started playing in ’06 the game environment was much smaller and most NX items were just covers for in game equips and weapons that didn’t have a functional purpose; purely cosmetic. As the game has grown, so has the cash shop. There are now certain aspects of the game that can only be accessed with NX (such as Amoria party quest). Most NX items expire in 90 days, so if it’s something you feel you need you basically end up spending what you might spend on subscription to other games. Since I can only hit one key at a time with my stick it has become increasingly more difficult to play without NX. There are certain items which I buy regularly to be able to play on par with traditional players (people that play with 10 working fingers). I rely heavily on my pet and pet equips to pick up items, mesos and use potions. If I had to pick up items myself or heal myself it would be too frustrating to play once I reach a certain point. Fighting monsters gets harder with each level and I can’t hit two keys at a time, so without NX items I’d have to constantly switch between attacking and healing. Not only would it slow me down, it would force me to waste tons of mesos on extra potions. Without a pet, I’d die very often, which is frustrating and wastes time and experience points. I keep a regular stock of safety charms; in the event I do die my charm saves me from losing experience. At high levels (120+ out of 200) it can take hours, if not days to gain a level, so if you die without a charm you waste a significant amount of time. There are special tickets which double points and drops. I buy double experience regularly. I level much slower than most players as is, so 2xs experience helps me to keep up with friends. On average, I spend $40-$60 every 90 days, which is comparable to subscription fees. There are times where I’ve been playing more often and I tend to spend even more during those periods. I like NX items; they make the game more enjoyable for me. On a whole, I don’t mind buying NX. I look at buying NX like buying console games, which I used to spend just as much on, if not more.
You gain game currency (mesos in MapleStory) by killing monsters, doing quests and selling rare game items. Many people (including me) make tons of mesos selling equips, scrolls and rare items. Some rare items are monster drops, while others are won in gachapon (a lottery type game feature which requires NX tickets to play); both methods rely solely on luck. Rare items and good equips (give high status boosts) can cost several hundred million mesos! Since the prices are set by players the prices/value of items fluctuates. You also use mesos to buy potions to heal or boost stats, as well as use certain in-game services, such as; transportation between areas and item creation. I’ve easily made and spent billions of meso over the past several years. I’ve had a few lucky sales (most recently I sold an elemental wand for close to 900mil meso) which in turn, allowed me to buy really good equips and rare collector items like chairs. My account consists of a 4th job level hero (133/200), 3rd job level priest (114/200), two 2nd job characters and a low level character for storage.
The difference in buying a game outright versus subscribing to game access or buying digital items is that there is a much higher risk of losing your investment with online games. I can hold a Gameboy DS game in my hands. I know my console games are here, safe in my home, available to use at anytime and only cost me a onetime fee. Since I started playing MS I’ve easily invested hundreds (maybe even over one thousand) of dollars over the past 3-4 years. Again, that might seem exorbitant to a non-gamer, but keep in mind that console game systems cost $200-400 for the system and $20-60 per game. The good news with console game systems is that you can trade them in for a little cash towards a newer model and short of a burglary on my home, my investment is safe and sound.
Maple Story is the first and only MMORPG I’ve ever played. It is also the first online game I’ve invested real money in (buying NX). In terms of overall investment, I’ve dedicated almost 4 years of time and had built up an impressive collection of equips and items. I’ve always known that hackers existed in MS. In fact, they were everywhere when I first started playing. You could see them fighting with no damage, vacking all the monsters and items off of map, botting or stealing drops. My second year playing there was a massive hack of most guilds, in which most guilds in my server (Windia) were disbanded. Since the guild hack I’ve been paranoid to accept trade requests, I avoid hanging out in the free market and I disable my chat and trade abilities. MapleStory security has improved a lot since I began playing and I actively take my own precautions. At least six months to a year ago I switched from using Internet Explorer to Mozilla Firefox because I read about hack threats and a few friends suggested the switch as well. I’ve changed my password and pin over time and I stay away from sketchy websites. I seldom use instant messages & when I do it’s with people I know. I don’t add random buddy requests. I have a pop-up blocker and subscribe to Trend Micro antivirus software, which in theory, gives me my own firewall and protection.
All that said, I sign in to play MS today, only to discover I’ve somehow been hacked. Needless to say, I’m devastated. I could see if I was completely naïve and didn’t take any proactive steps to protect myself; the fact that I do and yet I still got hacked makes me furious as well as crushed. How much more do I have to do to protect myself? What is my antivirus doing? It’s designed to provide me with “internet security,” but given this incident, clearly my information is not secure. Putting the time factor aside, the hacker stripped my account clean off any/all equips worth meso, including (off the top of my head because 1- I didn’t keep a running inventory of my things, 2-I’m too flustered at the moment to try and make a comprehensive list & 3- It’s highly doubtful Nexon will reimburse or return anything); two devil sunrise swords (mine being 116attack), toy maker equips, round pink chair, Olivia chair, countless scrolls, all the inner tubes, another 100+ sword, all the holiday even equips I collected (which is almost all of them since Halloween ’06), priest equips that gave me +50int stat boost and the 700mil mesos I had in my storage. So in essence, I was robbed of at least $300 in permanent NX items/modifications, easily 1-2bil mesos worth of equips and 700mil in fluid mesos.
I sit here scratching my head at how I was hacked and whether or not the theft will only include my MS account. Should I be panicking because I paid bills online today? Are my bank accounts next? I feel overloaded of mixed emotions and many questions. Most importantly, is the invasion over? Although they might seem like pointless pixels to some, I was robbed of items that were rightfully mine. Unlike a house robbery or mugging, there is no insurance to cover my virtual property. I feel just as violated. It doesn’t matter that the stolen goods were virtual. They were my equips, my items, my account; paid for with actual time and money. What if anything can be done? I’m going to report it to Nexon (company that owns MS), but what will they do about it? Given how easy it is to trade, drop or sell items, is there any way to trace my things? Even if they could find all my things, what happens to the person that buys them thinking the seller is a legit player? Will they return my 700mil mesos, if nothing else? How can I prove what I lost? Then of course there’s the bigger concern of all the other potential info and virtual things I own. Why is it that I use a paid antivirus program and hackers still broke through?
I was on MS just last week and all was well. Whenever the account was hacked has got to be in the last 10 days (at most). In terms of my actions, the only thing I can come up with is the fact that I used Internet Explorer this past week. The Trend Micro software and a couple other programs use it as a default browser and a couple of flash games I like work better. I did a manual scan (right after I discovered I’d been hacked) & sure enough, it found a bunch of cookies; thanks to Explorer. Why is it that threatening things are blocked on Mozilla and get through on Explorer? I’d gladly take Explorer off my computer, but I tried that once in the past & Windows did not react kindly. Besides, the damage is done.
This whole experience has left me angry & feeling vulnerable. It saddens me to quit playing MapleStory. I’ve had a lot of fun playing. I’ve seen dozens of players come and go these past four years. If my buddy list, guilds and general experience are representative of the MS community, I’d say I’m one of the few (out of millions) that have stayed relatively active for that long. Nexon will be losing a reliable, dedicated customer; whether or not they care is questionable. I’m wondering what to do next. Regardless that it’s a bunch of pixels, it was a collection of things I worked hard to get (Hard in terms of gaming; I realize it seems trivial in terms of life and importance in general.). Legally speaking, I paid for quite a bit of it with real money. With everything I’ve been through in my life; divorced parents, the death of my sister, my accident and subsequent paralysis, this doesn’t rate as super high in terms of trauma. It is the principle. MapleStory has played an important role in my life post accident and everything taken represents a collection of things that has given me a bit of happiness, despite my lowest times. It’s not the first time important things have been stolen from me. Lord knows, my accident robbed me of an entirely different life.
The computer empowers me and gives me freedoms to control my personal info, shopping, banking, socializing, advocacy and bill payment. If I can’t trust “secure” sites like Facebook, Yahoo, Best Buy, Bank of America or Internet Explorer at all, how can I safely use the internet? I’m shaken, disappointed and confused on where to go from here, in terms of my virtual life.
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