Blog Hiatus

I'm sure many of my blog readers have been wondering why I haven't posted any new blogs in over a month. It is because I was busy focusing my energy of finishing my autobiography. It is a project I started shortly after my accident, but kept hitting mental roadblocks and perpetually procrastinated on getting it done.

One of the biggest obstacles was my physical limitations and not being patient enough to work with dictation software. When I still lived at Cheshire I was limited to pecking away on my keyboard with my mouth-stick. I was a lighting fast typer when I could use my hands (never had to look at the keys) and can type surprising fast with my mouth-stick. The task just became tedious. A couple of the other residents highly recommended I buy the dictation software, "Dragon Naturally Speaking" and many of them used it regularly. I felt foolish speaking to the computer, and hated the fact I never had privacy and would have inevitably be overheard by roommates. At that point I decided against wasting the money, and kept on pecking away at the project.

For whatever reason, I only ever seemed to get the first thirty or so pages written. I kept hitting mental roadblocks whenever I tried recalling my time at Kessler. Honestly, I think I was so stressed out by the immediate issues, of being sleep deprived, stuck in a nursing home and dealing with the high stress level of each day, that I couldn't delve into the haunting memories and difficult experiences of my stay at Kessler. If anything, I wanted to run far away from those memories and much preferred to escape my miserable reality, through reading books, watching anime, spending time with friends and vegging out on video games.

After a while, I just stopped trying. I put the project on the back burner and focused my writing on current, day to day things. I used my MySpace blog as an outlet to vent my daily frustrations and every day struggles. When things became unbearable, and I hit my breaking point I switched gears and focused all my time and energy on getting myself out of Cheshire and into my own place. It took six long months of relentless researching, planning, pleading and begging, but I did it.

Once I was home I tried a few times to pick the book project up again, but would constantly spend all my time re-reading and re-editing; never making progress. I started focusing a lot of energy into painting, instead of writing and worked hard to build up a body of work worth exhibiting. I wrote about my artwork, as the book started to collect virtual dust, again. I was limited to the time I was able to be up in my chair, so I had to prioritize how best to spend that time, since it was when I could be most productive. I made the choice to paint and remained focused on that.

The book was always lingering in the back of mind. It bothered me, having it unresolved and unfinished. It wasn't like me to give up on anything I started. I caved in and bought the Dragon dictation software, hoping I could use it to be productive during my time in bed. I figured instead of playing my Nintendo DS, reading, or watching TV, I could begin putting my thoughts down and use my evening hours to write. I still felt silly speaking to the computer, but felt a little better knowing at least I had privacy. The software was glitchy and I didn't have the patience to do the training exercises. It ended up being more irksome than handy, and yet again I abandoned the project.

This past April my ex-boyfriend Jimmy resurfaced into my life. He knew I was struggling, and was at my wits end, with everything. He wanted to know how he could help me. I instantly knew that THIS was my opportunity to dust off my book file, and tackle the project once and for all. He was happy with the idea and we decided to begin working on it right away. I just knew that having HIM help me, would give me the accountability of meeting deadlines and the fact that it was OUR project gave me the focus and motivation I needed. I felt like deep inside there was so much I wanted to say, so much I wanted to share. I believed my story has the potential to help others and I felt like it would give Jimmy and I some much needed closure and mutual understanding. Although he'd remained in and out of my life over the last six years, there was a lot of things he missed out on. Out of all the people in my life, it was important to me that he understands my WHOLE experience with paralysis; from start to finish. I wanted him to understand my suffering and hope that having completed the project together it will put everything into perspective for him, and for us.

At first it was really challenging, just laying out the structure for the book and putting together a game plan. It had been so long since I had really thought about the dark days of Kessler and my time at Cheshire. I knew writing the book would open up a lot of old scars, but I felt ready and able to handle it. Luckily, for a large majority of my time post accident, I have kept blogs, or journals. I was grateful to have those entries to use as a reference, to try and create outlines of what I wanted to say in each chapter, and to put everything in chronological order, and to attempt to maintain a coherent flow, without too much repetition. If my memories were fuzzy, or I had gaps in my records I turned to family and friends to double check my facts, and to piece it all together.

Jimmy would come down to NJ (from PA) about once a week, or every other week and he would help me type huge chunks of chapters. I tried my best to write a little every day. Having my iPad was a tremendous help. As my health had declined, further and further my time sitting up has progressively decreased. Thankfully, I can write on my iPad laying flat in bed. It allowed me to keep up a fast momentum. Every so often, throughout the day or night I would write a few paragraphs. I tried to save the emotional parts about my relationship as my own personal project and forced myself to get those parts finished, between our visits.

The first third of the book was emotionally the hardest, but having Jimmy's support helped me stay focused and kept me on task. The last third of the book was the easiest part to write, because it focuses on the most current events in my life and my present day thoughts, opinions and struggles. I ended up writing middle portion of the book last, since I had the least amount of reference material to go off of. It took me a while, to interview friends and family and get the outlines finished. Once the outlines were completed, I just worked on checking off each topic from each list, until it was finished.

That said, from start to finish, it took me the past four and a half months of intensive writing to get the entire story down on paper. It's twenty one chapters long and over 250 pages. It was a monumental task, but I did it. I couldn't have done it without Jimmy and am eternally grateful for his assistance, in helping me realize my goal. The hardest part is over. I've said everything I want to say, and truly believe that he and I were meant to do this project together. For so long, we've both struggled over trying to make sense over why we met, and had such a wonderful, loving relationship, only to see our dreams get shattered and torn apart. This is not the life either of us wanted, or planned, but this book is something that we were able to turn our pain and tragedy into something good, and helpful; that hopefully will benefit others and inspire people to support research and change their perspectives on life and death. It will be our legacy and something that can continue to help, and inspire others to enact change, even once we're long gone. That feels good.

Right now I've been working with a couple of editors and trying to determine how much it will cost to get the book professionally edited. I've gotten some great feedback, but it's going to take a substantial (between $2,000-5,000) amount of money to get the job done right. I'm waiting to hear back from lawyer, to see if this is something I can use my trust for. We shall see. Honestly, I think it should be permissible, because it's definitely an expense that will go towards improving the quality of my life and hopefully that of many others. Once I get the editing logistics/fees ironed out and the book is edited and ready for publication, I plan to use lulu.com to covert the book into e-book (aka paperless) format. Once it's published it will be available to purchase through Apple's iBook app (on iPad), through Barnes and Noble's Nook and Nook Color and hopefully through Amazon's Kindle.

I'm super stressed, waiting to hear back from both editors with quotes and timelines. I'm even more stressed at how much it might cost me. I'm anxiously awaiting my lawyers input (and hopefully his approval). As soon as I have those answers, I'll know what is the best way to proceed. Either way, I have faith it WILL get published soon (within the next few months at the latest). I'm thrilled about it and can't wait to share my story (my WHOLE story) with the world. I look forward to hearing reader feedback! I'll keep everyone up to date on the progress and definitely inform you all once it's actually for sale. I'm so close, and very proud of myself. I hope readers will enjoy it, and that it will open some hearts and minds.



- Posted using BlogPress from my iPad

Foolish Girl

Innocent dreams, of a foolish girl
Blinded by a false sense of security
No control, no planning could ever make it be

One mistake, shattered lives
Body broken, beyond repair
Life forever changed, thrown into despair

Dreams disintegrate before my eyes
All I can do is lay and cry
Losing everything I've loved; what was once mine is gone

Can't repair the damage done
No matter how hard I try, how loud I scream
Life is harsh, cruel, and mean

I'm left inside a broken shell
Forced to live within my personal hell
Wishing I would wake from this nightmarish spell

My life is not a dream
Every day I'm faced with harsh realities
All I want to do is run

Devoid of joy, of hope, of fun
Surrounded by everything I want, so out of reach
Imprisoned in this lonely keep

Deprived of touch, of warmth and affection
Living has become it's own infliction
Every day, harder than the day before

I can't take this pain anymore
I long for everlasting sleep
I just want to be at peace






- Posted using BlogPress from my iPad

"The Sea Inside"

The other day I watched a very power movie, called "The Sea Inside." It is a Spanish film, that came out in the theaters, back in 2004. The story is based on the true, life story, of a quadriplegic man named Ramon Sampedro. He was injured in a diving accident (very similar injury to my own), off a cliff, nearby his home, into the sea. After his accident, he spent nearly thirty years fighting with the Spanish government, for the right to end his own life. The movie chronicles his uphill battle against the government, in a country, which is highly influenced by Catholic church. It depicts his day to day home life with his family, and caretakers, as well as the development of friendships, with two key women. One woman, named Rosa, is a local, single mother of two, who learns about his plight, through the media coverage of his case. The second woman, is a lawyer, who is battling with a debilitating neurological disorder, and decides to help him win his case, in hopes of securing her own to die, with dignity. Both women come to know, and love him, and end up helping him, in very different ways. In the end, Ramon gets his wish, despite losing the case, for the petition, to legally end his own life. The movie is extremely well written, acted, and touched my heart, and mind on many different levels. It is a story I can completely relate to, and Ramon's view points, and philosophy on life, are very similar to my own. If he were still alive, I'm sure we could talk for hours on end, about the cruelties of paralysis, and how important the quality of life is. I think if there's a heaven, we might become good friends. I'm interested to read his book, which was published shortly before his death, and am inspired by his tenacity and courage.

One of the things that struck me most about the movie, was the interpersonal relationships, between Ramon, and his family members, and the different dynamics each of them shared. It was insightful for me, and hit very close to home, to see the pain and anguish that his family members experienced, do to his injury, and the different way each of them coped, with having to help him, and also each of their varying attitudes, towards his wish to die. An especially poignant scene, is where his ailing father, who is normally very tightlipped, and somber, says something to the effect of "it's hard enough to lose a child; it's worse to watch a child, that wants to die." It's evident how much his father has suffered, watching Ramon suffer, and the feelings of frustration, and inadiquicy that must come along, with not being able to help his son heal. He is also torn between, his two sons, who argue bitterly, over Ramon's injury, and its impact on the family, as a whole. Ramon's older brother Jose, clearly feels resentment over his brother's life, and care being a burden and strain on the family, and yet he is the one most adamantly opposed to his brother's wishes to die. I found it interesting, that although he clearly blamed his brother for having a negative impact on his life, he seemed most affraid, and hesitant to let him go. I can't help but wonder, and compare my own situation, to Ramon's and think about all the stress, tears, and suffering my accident has caused on my family. Despite their spats, it was clear that Ramon was very loved, and well cared for. In fact his sister-in-law, Manuela, serves as his primary caregiver, and doted on him, as if he were her own child.

Ramon's case became a big media blitz, and caused a bit of scandal, given the influence of the Catholic church, and it's roots, into the heritage, and history of the Spanish goverment. One point in the movie, a Catholic priest, who was also quadriplegic, decided to make it his mission, to "save" Ramon, by going to see him, and try to persuade Ramon to change his views on living life, despite paralysis, and publicly suggested that perhaps it was just that Ramon lacked love and compassion, and that his petition for the right to die, was just a cry for help. Naturally, his comments both offended, and deeply hurt his family, whom loved him very much. Like myself, Ramon felt that this life is not a quality life. He believed like me, that it is a second best, compromise of the lives we once had, that strip of us of our freedom, and dignity. He was not happy with settling for life with paralysis, and neither am I.

It is not that I (or Ramon) don't appreciative the love and compassion my family and friends have for me, but love alone is not enough, to take away the physical and emotional pain that comes along with having to live such a limiting, unnatural way of life. Wanting to die, has nothing to do with lacking love, and/or support. Ramon's family was deeply invested and involved in Ramon's overall health, and well being. He had many interested, caring friends. I too have an abundance of love, and support. I am blessed with a strong network, of family, friends, and medical staff, to support me, and provide me with the best possible care, given my condition, and my limitations. I am grateful for the love, and interest my loved ones take in helping me, and being there for me. Unfortunately, love alone, is not enough, to counter balance the physical suffering, emotional trauma, loss of indepedemce, and losing the life I once had. There is nothing, short of a miracle, and/or cure, that can give me back (some of) what I lost, and make up for all the suffering I endure. Neither is very probable, or likely to occur, within the near future (or realistically speaking, even within the next decade.) I understand Ramon's wish to die, and respect his decision.

Its not to say I think all quadriplegics should die, or that their lives aren't worth living. I can only talk for myself, as did Ramon. He was not satisfied with having to endure the indignities that we're forced to face every day, every second. We don't get a break, and all the love in the world doesn't heal this type of injury. It doesn't take away the fevers, the cold sweats, the lack of privacy, or independence. Ramon's attitude was based around the idea, that each individual person has their own threshold for suffering, and while one person might find satisfaction in living dependent on others, and/or machines that, that low standard of quality of living should not be forced upon those of us that have to live it. After all, only Ramon knew what it was like to live in his shoes, and the personal hell that he had to endure, for almost thirty years, against his will. For me, and Ramon, paralysis is worse that being a prisoner. We are being punished, by being forced to live through unnatural means, against our will. That isn't fair, nor is it humane.

I can't speak for other quadriplegics, I can only speak for myself, about my struggles and the physical, and emotional impacts that paralysis has had on my life. I don't judge people who want to live this way, by calling them crazy, for giving in, for settling, for enduring, despite all the pain. I only know what I lost, what memories haunt me, what standards I hold myself to, and what brings me joy and fulfillment. It's easy to judge, when you don't have to deal with a fraction, of what I (or Ramon) went through, and in my case, continue to endure. No one has to sit every day, battling my inner deamons, frustration, disappointment and disgust, over the way I'm forced to live, but me. I think everyone should have the right to determine their own level of worth, and value, in terms of living, versus suffering. Let me worry about my own soul. Let God be my judge, instead of presuming his/hers/its purpose for my life.

Unlike Ramon (who cleverly had a chain of people prepare him a glass of water, mixed with poison, which he ingested, through a straw, on camera), my conscious would never allow me to jeopardize someone else's freedom (by making them criminally liable), or share the burden of the responsibility, for my death, by asking friends, or loved ones, to carry out, my wish to die. If/When the time comes, that I've reached my threshold, and can no longer continue to suffer, as I am, I will choose to excersise my right to refuse nutrition/hydration. It will not be quick, like Ramon's death. It will most likely, be days, or weeks, of slowly waiting to die. Although it might be painful for my loved ones to witness, it is the only option, that safeguards my loved ones, and keeps all the blame with me. Personally, I don't view my refusal of help, as suicide, rather the natural progression of nature. I feel as though my life is being sustained through artificial means, and do not find joy, or quality, in the lifestyle that paralysis has forced on me. I don't see my refusal of nutrition/hydration, any differently than my refusal to want to be hooked up to a vent, feeding tube, colostomy, or any other artificial life support. Right now, people act in place of machines. Either way, I'm unable to fend for myself, and would have died long ago, if I "left my life into God's hands." I think it's bad enough, I'm forced into a corner, where my only options, are to accept this low standard life, full of chronic illness, and no cure in sight, or have to starve to death. We treat our pets more humanely, and like Ramon, it really pisses me off, that God & religion, have such a strong influence, over laws, in a country where church & state, are meant to be separate.

During his campaign to die, Ramon befriended and fell in love with one of his lawyers, Julia. She was suffering from a degenerate neurological disease, similar to MS, and in my opinion, used Ramon's case, to give herself peace of mind, and as a selfish means, to try and use Ramon's case (in the event the government granted him permission, to die by lethal injection) as a precedent, to be able to end her own life, with dignity, before her disease effected her ability to reason, and/or memories. Whether intentional or not, and despite the fact that she was married, she toyed with his emotions, and even went so far as to help him write, and publish his book, and promised him that'd she'd personally help him carry out his wish to die, and die alongside him, once his book was published. Instead, she backed out of the deal, by letter, leaving Ramon, more heartbroken and suffering, than before she met him. Ultimately, it is a local woman, named Rosa (who fell in love with him, became his friend, around the same time period as Julia), who agrees to take the pivotal part, in helping Ramon, realize & carry out his plan to die. It is ironic, that during their first meeting, Rosa goes to meet him, in hopes of inspiring him to find a reason to live. Over time, she came to love and respect him, and finally understood, that the most loving gift, she could give him, was to recognize his suffering, and respect his wish to die.

Like Ramon, my wish is for people to understand how much I'm suffering, and to also respect my wish to NOT want to live THIS way. It is not a normal way to live. It is not easy, being 100% dependent on others (I find it frustrating that some people could accept & respect my wishes, to not want to be dependent on machinery, but yet expect me to accept being dependent on people). Being dependent on others is in many ways harder than being dependent on machines (which I have been), because there is shame, guilt, and judgement, involved in having to reveal yourself and be cared for by people. It is degrading, embarrassing and humiliating to have to be bathed, clothed, and fed, like a baby. It is extremely hard having to accept help, and share your private, personal space, when you have lived and are accustomed to being, an independent, self sufficient person.

Ramon was right, in that "this life has no dignity." I don't think that it's fair that such a low quality standard of life be forced upon people. I think people SHOULD have the right to die with dignity, and peacefully, if all life offers them, is a life of chronic illness, and suffering. People with incurable, debilitating diseases, shouldn't be forced into living UNNATURALLY long life spans, just because there are resources and means available to extend their lives. People like me & Ramon, should have a humane option, out of being otherwise, prisoners in our own flesh. I'm not saying that everyone in my shoes would chose to "opt out," I'm just saying that sometimes ending a life to prevent prolonged suffering, is more humane, than forcing someone who would otherwise be dead (because they can't care for themselves), to live and suffer.

My hope is that, if I do choose to one day stop accepting help, that those people closest to me understand my reasoning, respect my decision and know that I tried to live THIS life, for as long as I possibly could, for their sake (I do not go through all this Hell for myself. That point has come, and gone, a very long time ago). I hope that my loved ones will forgive me, and know that it is not for lack of love, that I want to leave them, but out of exhaustion and being tired of suffering. I wonder if Ramon's family have forgiven him, and have been able to move forward without him. I wonder how well, or poorly they coped with his death, despite knowing his wishes, and witnessing his suffering. I wonder if there is a heaven, and a God, if Ramon is there, beside him/her/it. I think if God exists, he/she/it will weigh the suffering, compassion, and generosity, of people like myself, and Ramon, and consider the amount of good a person has done, against the bad, and that a loving, all knowing God would forgive people, in our situation, for wanting to leave THIS life behind.





- Posted using BlogPress from my iPad

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. 

iPad Review (with people with disabilities in mind)

I've had my iPad for a week now & have to say, I'm loving it! I haven't gone nuts downloading a ton of apps, but I do have a variety that I think are worth mentioning. There are a few things I'd definitely like to see in the next generation of iPads and a few flaws, that Apple could probably address with software updates.

Overall, the functionality is pretty intuitive and I can do most things that anyone else could. There are a few multi-finger gestures that I can't do, but for the most part, I've been able to navigate quite well, using my stylus. Certain functions can be done in multiple ways, for example, you can enlarge or shrink pages by pinching and pulling at the corners or you can double tap. I have noticed that the iPad is very particular and is programed to sense tiny differences in movement, pressure and the duration of your finger or stylus is on the screen. Because it is so sensitive, it does seem to work more accurately and consistently with fingers, versus the stylus. There have been many times that I've been using it and I have to try to push the same area two or three times, before I get it just right. It can be annoying at times. I think the easiest solution would be, for Apple to design a capacitive stylus with a more precise tip. All of the capacitive styluses that I've come across (including the Pogo that I'm using) have a thick tip, about the circumference of a pencil eraser. If they could somehow narrow the tip to a point, it would make it easier to be accurate.

As far as accessibility to goes, I really think Apple should include some sort of override setting for the stylus. It would solve the problem of not being able to do multi-finger gestures and it would help the iPad to recognize the difference between stylus and fingers. I haven't tried the Voice option yet, but the ability to change font size and adjust the volume and brightness, in the settings menu is helpful. I'm very pleased that there aren't many external buttons. The only other "problem" I've come across in concerns of accessibility is that, some apps rely on movement and/or do not self adjust the orientation. In terms of being accessible, Apple should consider the fact that many people with disabilities cannot pick up, or move the iPadthemselves. I realize that there are only a small amount of iPad users with this unique problem, however, it is a concern to those of us dealing with paralysis and motor skill deficiencies. It's a minor issue that could most likely be easily resolved by giving users the option of shutting of kinetic features and/or individual apps could give users alternative means of controlling the device. 

The iPad technically, has no "correct" orientation, and is supposed to adjust itself based on the movement of the iPad itself. You can choose to lock the orientation if you wish, however some apps (mostly games) rely on kinetics, such as Nintendo Wii. In the game Sims3, for example, you need to shake the iPad as part of earning cooking skills. Since I can't shake, or handle my iPad, I'm destined for virtual cooking failure. It would be simple for creators to allow tapping as an alternative; just as lazy people have the choice to play their Wii from the couch. Kinetic gaming features are cool, but I don't see any justification for them being absolutely necessary. Many of the current apps already allow for customization, so I don't see why Apple couldn't make the kinetic features optional.

A lot of the iPad apps are iPhone apps that Apple has tweaked for use with the iPad. The one glitch I've encountered in several apps, is that they are only setup to work in the "portrait" position. This means, you're forced to use the iPad vertically, and depending on how you have to position the iPadin order to use it, vertical might not be the most convenient orientation. I for one, use my iPad in the horizontal orientation, because the height is shorter than the width, thus making it easier for me to reach/touch the entire surface.The current apps that only work vertically, could easily provide updates to rectify the issue. Some of the TV sites like, ABC, TLC and Discovery Channel do not (yet) automatically self adjust, or the home page is vertical, while the videos can be watched in either portrait or landscape. I'm hoping more apps will update the iPad apps to work in both orientations. I find it ironic that there are (at times) unnecessary kinetic features embedded into games and yet, apps that should respond to movement, to auto-correct the orientation of the iPad don't always work. 

My only other complaint is the inability to view or use anything to do with Flash. I think this is a big mistake, as tons of very popular websites use Flash and aren't accessible on the iPad. No Flash means only having a limited access to the web; which stinks. I'll be using my iPad primarily from home, so I rely on my existing wireless network for internet access. However, I'd be ticked off if I was one of the thousands of people that are paying extra for 3G (access on the go) service. I can't see paying full price for internet services, if you don't have full access. Some of my favorite sites rely on Flash, like HULU and Facebook games (like Zynga and Slide games). You can also forget about playing huge multi-player games, like World ofWarcraft and Maple Story. I can't even access the social section of my own website, because it uses Flash. If I really want/need to access Flash websites, I can switch off to my laptop. Apple would like you to think that the iPad is a smaller, more convenient version of a laptop PC, but that isn't true. The iPad has the potential to replace traditional laptops in the future, but currently, there are too many missing capabilities to make the switch from a PC to iPad alone. Right now, iPad's capabilities are stuck in between the versatility of a PC and the limitations of specialized mobile gadgets, like e-books. That said, the things the iPad CAN do are pretty sweet!

Two of the best features of the iPad are it's compact size (smaller than the average magazine) and its full touchscreen. The iPad is definitely easier to lug around than a laptop, and easier to read, and operate than smart phones. My dad is always complaining about the ever shrinking size of electronic gadgets; he says, "they're designed for Leprechauns." I know myself, that trying to use my cell phone or other electronic devices are difficult to use, because of my limited mobility. I no longer have the dexterity or fine motor skills required to push buttons that are a quarter inch in size. I'm sure many people with disabilities, and the elderly, find it frustrating, not being able to read or accurately press buttons. The iPad is great, because it allows for customization. You can increase the size and type of font of text and easily zoom the screen in and out, which makes for much easier reading. The lack of buttons is also a plus. The touch screen is far easier to operate than pushing keys or having to scroll and select things with a mouse. If I want to type on a PC, using Microsoft's on-screen keyboard, I have to use mouse to select and press each key. The process is so tedious that it's not worth it for me to use. My iPad's on-screen keyboard is huge and I touch each key directly, as if I were using a traditional keyboard. Being able to type laying down gives me more time in the day to write, answer emails and surf the web. Before I owned the iPad, I was limited to only typing if I was sitting and only being able to use the mouse, if I were laying down. Now, I have more options to how I spend my day, because I have extra time to write. 

The other great features of the iPad are: e-reader, social networking, productivity, gaming, music, videos and creativity. Even though there are limitations to surfing the web, it's great to be able to check e-mails and keep up with social networking sites, like Twitter and Facebook. The e-reader feature is awesome, and has all the best qualities of the top three competitors. iPad gives users the freedom to download and purchase books from a variety of sources, so you can shop around for deals and freebies. The fact that it has a full color touchscreen, makes it feel more like you're reading an actual book or magazine. The advantage is, you can store thousands of books into it's small size, customize the font and look up words, with it's built in dictionary and search features. Not to mention, for someone like me, that has to turn pages with a stick and has an elaborate set-up (tables and book stands), every time I want to read, the e-books are a godsent. My iPad has taken out all the stress that comes along with reading and made me more motivated to want to read. 

If you get tired of reading, there are tons of fun games, which are all operated by touch, similar to the Nintendo DS. You can also save space withiTunes, since you can store tons of your CDs and movies. It's pretty amazing how much stuff you can carry around in such a small device. There's also lots of great productivity apps, that give you the ability to work on the go, manage/organize information and jot down ideas. One of my favorite apps is Sketchbook Pro, which lets me create art. I haven't had the freedom to sketch in a long time. For me, the annoyance of having to ask for help every two seconds, (for an eraser or changing colors) takes away the enjoyment of drawing. The iPad sketch book gives me the freedom to switch colors and textures, as well as to make corrections on my own. It's amazing how well the program simulates different mediums and it gives you the ability to create work in layers. I'd say it's a must have for any artist.

I realize the iPad is a bit pricey, for the average middle class person. The good news is that it does come in several versions; the cheapest runs around $500. If you already own a smart phone, you might want to wait and see what (if any) changes they make to the next generation of iPads. The originaliPad is sure to drop in price as newer versions get released. If you don't own a laptop or a smart phone, you really should take a trip the Apple store and check out the iPad. Also, if you're thinking about investing in an e-reader, it's well worth the extra $100-200, considering everything the iPad can do. I'd highly recommend the iPad for people with disabilities, especially those people that enjoy reading and/or writing. It can take the place of bulkier, assistive devices, that aren't as versatile or easy to use. Plus, the iPad gives the user freedom to switch between tasks independently. I'm always grateful to have anything that gives me back a sense of freedom or independence.

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.