Tuesday, September 13, 2011

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

Monday, September 12, 2011

"Schwartz Center Rounds Annual Dinner"

I'm happy to announce that fifteen of my paintings are going to be on display (October 3, 2011) at Overlook Medical Center, as part of their "Schwartz Center RoundsAnnual Dinner." The event facilitator, Jeanne is a friend of mine. She and I met online about six months (through my many searches about palliative care and hospice). She is the "Ethics & Palliative Care Program Coordinator" at Overlook Hospital (here in NJ). I had contacted her, asking about patient's rights and shared a brief history about my accident, and my struggles. It turned out that she and I shared a mutual acquaintance (from Kessler). We shared email correspondences over a period of several months, and she was very moved by my blogs and artwork. Before long we became friends. She has been very supportive, and caring.

She came to visit me a couple of months ago, and we discussed the possibility of displaying some of my artwork at the hospital. She explained that she worked very closely with doctors, nurses and other medical professionals and thought that the medical community at her hospital could benefit from seeing my paintings and reading my writing. She said that part of her job entailed helping new doctors and nurses learn to be more compassionate and empathetic to patient's needs. I agreed, and was happy for the opportunity. I have often felt frustrated by the lack of help that medical science has been able to offer me, and upset by the treatments and lifestyle that I'm forced to endure because of my injury. I do believe my artwork could potentially help medical professionals better understand what it is like to live paralysis, and to suffer with chronic pain and illness. It has always been my hope, that by sharing my writing and my artwork that I would educate others and open people's hearts and minds.

I truly believe in order for a cure to paralysis being found, more people must understand how horribly and profoundly it can change a person's life and how difficult it can be to live with it, everyday. I have also come to believe strongly in patient's having the right to advocate for themselves and to have the right to die with dignity (when medical science can not offer a cure or relief to severely debilitating or incurable illness/conditions). I think it is important for medical professionals to do everything within their means to give patients the highest quality of life they possibly can, to listen to what their patients are saying and to alleviate suffering whenever possible.

I think it is crucial for the medical community and society at large, to recognize that some conditions are worse than death, and when/if a patient is mentally competent to asses his/her own situation, that he/she alone should be able to determine what lengths he/she is willing to go through to preserve his/her own life and those wishes should be respected. In many ways, I feel our society is more "humane" to our pets than we are to millions of people that are essentially forced into suffering, because there is no cure, or treatment available to alleviate their pain. Not everyone with an incurable, terminal, debilitating disease or injury would choose death, over life. However, I believe there ought to be a quick, peaceful alternative available to those who want it. I hope my artwork and my writing will inspire change.

I think this dinner at Overlook hospital is another small step in my journey to open hearts and minds towards suffering, quality of life and death. I really hope my works hits a soft spot and sinks in, for all the medical professionals that attend. I hope it makes an impact.The dinner itself is an annual event, and has an interesting history. I feel honored to be included in the tradition. I asked Jeanne to tell me a little bit about the purpose of the dinners and about their collective history. This is what she sent me:

"Schwartz Center Rounds were started by Kenneth B. Schwartz, a health care attorney from Boston, who died from lung cancer at a young age. He wanted to leave a legacy of support for professional healthcare workers to enhance and replenish their abilities to provide compassionate care for patients and families. He recognized that some of the most important work of healthcare professionals is to deliver compassion to their patients (hand holding, listening, laughing, combing hair, etc.).

The purpose of the monthly Rounds are to provide a forum and “level playing field” where caregivers from diverse disciplines (doctors, nurses, social workers, chaplains, dietary workers, etc.) discuss difficult emotional and social issues that arise in caring for patients. It is a forum to explore the human and emotional side of clinical medicine ---but with the focus on the patient-caregiver relationship rather than solely on the patient’s medical situation. Even though doctors and nurses cannot cure many conditions/diseases, they can still relate to one another and to patients and families in a way that provides hope, support and sustenance to the healing process.

We have these Rounds monthly and usually present a case that was difficult or emotional in some way. We often shed tears. Once a year, we hold a special “Rounds” where we invite a patient or family member to share their views about the experience they had. As you can see, your artwork and story will be a very powerful topic for discussion and expression of feelings from all.

Your paintings and your voice will carry your story to the hearts of each of those who come and will strengthen their ability to reflect on the suffering of all patients."

Good stuff :) I'm excited to hear the feedback!

- Posted using BlogPress from my iPad