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

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. 

Faith, or lack there of...

Although I grew up in a Catholic household and attended Catholic school for ten years, I never really bought into the belief system. I guess you could say that I've been an analytical person my whole life, and tend to question things that don't seem logical to me. It's very hard for me to trust in anything that isn't supported with evidence or cold hard facts. I guess most people just follow through believing and/or practicing what ever religion their parents are, or the religious beliefs of their country. On a whole, the adults in my life are not overly religious, so that might have influenced me to doubt or question my religion lessons in school, and later in life. Even as a small child, I had a difficult time believing in the stories of the Bible and magical characters like the Easter Bunny or the Tooth Fairy. Other than telling my Kindergarten class that Santa Claus didn't exist, I tried to play along and not to ruin it for my friends and siblings.

I tend to enjoy playing devil's advocate and like to question or pick apart subjects and have mini debate sessions with my friends. It can be a bad habit at times, because it makes it near impossible for me to enjoy movies, television or books at face value, without over analyzing every detail. It impacts my social life at times, in the sense that I often read into situations more than necessary and end up creating undue stress or anxiety for myself. Generally speaking, I'd say the ability to analyze facts and assess social situations are both good qualities. My problem is that in the past, I tended to only apply my analytical skills to my studies, career and planning, while acting spontaneously and carefree in other aspects of my life. Sometimes, when I look back on my life I wish I could've been more consistent and took the time to think through all the choices I made. I always joke that I'm book smart and life dumb. Although my accident has given me a new perspective on life and opened my eyes to so many things; the one thing that has always remained the same is my lack of faith in a higher power.

Logically, I have an extremely hard time believing in any concept of God. I rely heavily on science and enjoy learning about how things work and why things do the things they do. I love learning the history of things and understanding how and why things are the way they are. In general, I like having answers and proof to back them up. I would imagine most people feel the same way. It is comforting when someone is able to offer you a reason or a solution to your questions. On the contrary, it's frustrating and stressful when no one can give you a straight answer or fix a problem you might have. My spinal cord injury is a perfect example of a puzzle without a solution. Not knowing how to fix my spine is infuriating. The fact that so much time and energy is spent on finding answers to other questions, when we (humanity) still haven't solved the problems of our own bodies seems absurd to me, but that is a whole other topic. What baffles me, is how people can have faith in something they have no proof of, or logical reasons for why or how it exists. In fact, I'd argue there is equal evidence, if not more, that should discourage people from having faith, yet people continue to believe. I'm fascinated by faith and often envy those that have it. I want to know what motivates people to have such one sided relationships and what influences them to believe.

Prior to my accident, I'd probably consider myself an Atheist. A lot of people confuse atheists with Devil worshipers, although they are very different. At the time of my accident I was at an all time low in terms of having faith in any deity, either good or bad. My childhood was filled with obstacles that ultimately turned me further and further away from believing in God. My parent's divorce and the death of my little sister (among other things) were enough to disprove the existence of a loving God. As I got older and learned more about the origins of religions (the reasoning and cultural history behind belief systems), I became less mystified and more aware of man's role in the creation of rituals and rules. Even now, it turns me off when I think about the corruption and bloodshed that has occurred and still occurs in the name of God.

The night of my accident I believed I was going to die and it terrified me. When I was face down in the water, unable to move and could barely see because of the darkness, I accepted the fact that my life was about to end. That night was the first of several nights in which I almost died (due to high fevers). It was during those first few weeks that I first felt the terror of not knowing what would happen if I died. Before my accident I would have said, "You die and that's it. Heaven and Hell are just fairy tales men made up to teach morality." Words are easy to say when you have no experience to back them up. Once I actually experienced coming so close to death, it's as if a switch turned on inside. The tiny flicker of doubt of "what if" has pushed me to find answers. When I do die, I don't want to find out I was wrong. Some might call it "guilt" or "fear," but regardless of my motives, I have felt the need to work on, or develop some sort of faith in God.

Now, I guess I'd be classified Agnostic. I've come to believe in some sort of higher being, but I'm not sold on any one religion, or name for God. Here again, logic steps in and makes me think that if there is a God, it created all of us and so why should it care what name we call it by? My religious friends all have arguments as to why it has to be their God, but so far I'm just convinced I have to be a good person and love my fellow man. When I describe a person as "religious," I mean someone who believes in a specific God/Gods and lives their life according to the specific rules of said God/Gods. I don't think someone has to necessarily be church going or radical to be religious.

On one hand, I envy my religious friends, because their religion gives them peace of mind and security in knowing that there is a certain purpose or plan for their life. On the other hand, I feel suffocated by the thought of having to buy into one group's set of beliefs. I don't like the thought of only a select group of people (worshipers) reaping the benefits of God, while the rest of humanity is doomed. I don't know that I'll ever be able to understand that mind set. Why should children, ignorant people or people that lived before a specific religion existed be punished for a choice they were never given? I'm trying to keep an open mind, but I can't even begin to trust in a God that would punish 99.9% of the beings it created. Why would God create us only to pit us up against one another? Who is to say which group is right? Even religions that are similar can't get along. I mean Jews, Christians and Muslims all worship the same God of the Old Testament and yet, still have been willing to kill one another over technicalities. The thinking of most modern organized religions keeps me from getting involved because it often tends to be black or white, with little room for thought or questions. Why did God bother to give me a brain if I'm only meant to follow blindly like a robot? Why give freewill if everything is already planned? So many people tell me that my accident is part of "God's plan." Doesn't that imply that I was forced to break my neck; that I never had a choice?These are the types of questions that make it hard for me to have faith.

I'm taking the time to read/learn about all different religions in my search for answers, as well as my desire to understand why people think the way they do. I'm interested in knowing what motivates people to believe. I'm especially interested in knowing how/why people that have faced horribletragedy or overcome tremendous obstacles have faith and if/how it impacts their ability to cope. I think having a stronger faith would give me more mental strength to keep moving forward. I'm met with the paradox of wanting to build faith, but not having much faith as a foundation to build from. I find it funny that I ask God to help strengthen my faith. It's as if I'm asking God to help me believe in him/her, just in case he/she actually exists. How does faith get stronger when you never receive any answers or proof to justify your questions? It's a riddle I find very difficult to deal with.

Of all the religious people in my life, I'm curious to know what factors influenced them in deciding which religion to believe: What factors make them believe in it?; How or why they think their religion is right and if they believe other religions are wrong?; What benefits do they feel they get from having faith?; Do they feel their questions are ever answered, if so how?; What proof, if any, do they feel they've seen that has validated their belief system?; What do they think about death/dying?

Art Education: Bringing Light to Contemporary Issues

Although it's been four years since my accident I still think about my "old" life on a daily basis. I can't speak for other people in my situation, but personally I find it impossible to not be reminded of everything I had and lost. One of the aspects of my old life that I miss the most is my career. It saddens me to think about all the years I spent in collage and all the time and effort I put into my work. I was truly blessed to know what I wanted early on in life and to have the motivation and talent to achieve my goals. So many of my friends floundered through college and/or chose career paths that they are unhappy with. I genuinely loved my college experience and my career. Not many people can say they enjoy their job. I have pictured myself as an art teacher ever since I was in junior high and although I always believed I'd create art on the side, I never envisioned myself as a "starving artist." I chose teaching because I wanted the stability of a steady job and for my love of children. Being an art teacher was the perfect profession for me, because I got to create art every day and inspire children to love art just as much as I do. It was also greatly satisfying to see the children creating and to see their finished artwork. Children's art is special because it captures the world from their perspective. I couldn't help but feel happy and re-energized when I would see all my students' work. Displaying the finished projects was one of my favorite things to do, because I was so proud of the work and wanted everyone to see how wonderful it was. Hanging displays also gave me the opportunity to teach the concepts or history behind each lesson to the larger school community.

It was (and still is) important to me to teach children to appreciate art and understand the vital role art plays in our every day lives. All of my lessons included historical examples of art work and highlighted the reasons behind each piece of artwork or specific techniques. This way, my students could learn about practical uses for art as well as understand how art impacts humanity and how all cultures use art as a form of expression.

I suppose there is a certain irony to my life, in the sense of how my career path changed. Most art majors in college would probably say their dream is to be a successful artist in terms of exhibiting and selling their work. In fact, it irks me that a lot of people use teaching as a "fall back" career option. My dream has always been focused on the teaching aspect of art education and never so much on my own artistic fame or success. That is why I say it is ironic that I find myself outside of the classroom and "working" as an artist.

Once I began painting again, after my accident I focused primarily on skill and technique. I joined the AMFPA and the paintings I give to them I create with the intention of them being able to reproduce them and raise money for the organization. I paint mostly still-lives for the AMFPA and working on them is great practice and skill building for me.

As many of you already know, my personal artwork focuses on my feelings and struggles with paralysis. I choose not to sell my work at this time and rather use it as a teaching tool. Although I am no longer in my classroom, it is my hope that I can educate others through my art. The paintings I've had in exhibits all touch on different issues that impact my life. Some of my work is highly person and depicts specific challenges I face or events that were traumatic. Creating each painting helps me to flush out certain emotions and thoughts I've kept bottled up. In this sense I'm sharing a small part of my burdens with the viewer. It is my hope that when people see my work they walk away with a new perspective on paralysis and desire to help raise awareness. Anyone is subject to injury and I think it's crucial that people understand that they could very easily end up in my shoes. Empathy is more important to me than sympathy. I want people to have a greater appreciation for what they have and to think about how they might feel in my situation. Many of the struggles I face are general issues that all people with disabilities can relate to. I also think it's important to shed light on the big picture and to highlight current events that impact my life, both directly and indirectly.

So, I guess you could say I am still teaching, just in a different way. I'd prefer to still be in my classroom, but am grateful that I still have an avenue for inspiring others to love art and to use art as teaching tool. I've been fortunate that people have taken an interest in my work and have supported me in my goals. I'd like to exhibit more in the future and will continue to grab opportunities to raise awareness whenever I can. For me, fame is not a concern. If I can help educate others about paralysis and in turn help find a cure, that's all that matters to me.