What you are about to read happened to me. I try to make no excuses. I am a big believer in personal responsibility. Did I choose to get a brain tumour? No, I did not. But I did react to it. I am pretty sure it is an unconscious kind of thing.
They say I am a medical mystery or, some say, "miracle"; I was in a coma for five months. I did not speak from August 2003 until March 2004 - even when I came out of the coma. The term is "akinetic mutism."
I really did not think of myself as a particularly happy person before the surgery. I am quite pleased with my response. On the whole, I was quite positive. I still am. I might get depressed in the future. If I do, I do. For now, I do not sit in dark corners, feel sorry for myself or take drugs. I laugh constantly. Maybe this is my disposition or constitution. Who knows? All I know is that I survived an ordeal of huge proportions, I am still surviving and, for many reasons, I am truly grateful.
This is not to say that physically I do not wish that I were back to the way I was. It would be so much easier on many levels.
It is very difficult for me to look in a mirror. In my mind's eye, I look (and sound) as I did before and, to be perfectly honest, I prefer that to what is in the mirror these days. It may be superficial, but that's how I feel. Of course, I can choose to see beauty on the inside, but it would seem I don't. That would be rational and even logical, especially at this point. So, you see, I know how difficult "choice" is.
So many people say I am an inspiration to them. I am conflicted about this because I never set out to be an inspiration. I did not cut off my own limb to save myself like that guy Aron Ralston did. I am no Lance Armstrong, who continues to inspire everyone who knows about him. They obviously did not set out to be inspirational, but they are. And in my opinion, they are mega fantastic.
I watched Oprah and saw two disabled guys who inspired me. As a result, I had a good dinner with my sister-in-law's dad, Bert, and his wife, Karen. They had not seen me since before the surgery. For me, watching this show was synchronistic. I made it personal, and it worked for me. I think awareness is key.
Anyhow, I have food in my belly and shelter over my head. For these reasons and more, I consider myself truly lucky. It is by no means easy, but at least I don't have to worry about the basics. If this had to happen, I am in pretty fortunate circumstances. I always feel encouraged; there seem to be many possibilities for me. This is a definite bonus.
I was never scared or frightened. I am still more interested in my condition than anything else. The interesting part was that I had very little or no control with regard to what happened. I had to give up the idea of control. This can be very liberating. It seems like I am a "glass is half full" - type of person. In any case, I really believe most of this stuff is intuitive. Like I said, maybe it is just my nature, but I simply felt this in my gut. I made the phone calls I had to make and I let nature take its course. This is not to say I was ever fatalistic - I asked many questions about my surgery - but I could do nothing about the tumour inside my brain. I had two lawyers help me with a living will and a will. You never know.
Weirdly enough, I also made plans in case I went into a coma. I assumed some part of me would "hear" stuff and I made my mom promise to read to me from my favourite book at the time and to play my music. She did. I remember nothing of this.
I am told I laughed or rasped appropriately at the punch lines of certain jokes at a time when I was still in the coma. I wish I could remember the jokes and the laughter, but I do not. Then again, I have a picture of myself at four years old at a birthday party I do not remember, at a house I do not remember. Even in late January, when I was out of the coma, there was an event that I absolutely have no memory of. Someone whom I know quite well came to visit me. Apparently I was quite vivacious at the time and I recognized her. So, for me, memory has little to do with consciousness. I was certainly perceptive at all these times, but the jury is still out on the specific meaning.
It is difficult for me to use a pencil or pen, so, in a sense, this book is my journal. It really never felt cathartic though; it was not a release, maybe because I am still dealing with my new physical repercussions. My handwriting is incredibly problematic now and my letters look very childish. In the very beginning of rehab, I could barely write by hand at all, so even this is an improvement. I really enjoy the process of writing, so the book was more of a compulsion - something I had to do and wanted to do. Maybe this book justifies what I went through and what I am still going through. In many respects, it hardly matters to me as long as it is beneficial and not detrimental to me.
I typed out my entire book using one bent finger. This was much slower than I am used to, and while it was a challenge, it did not feel daunting to me. I could really think about what I wanted to say because I had more time. I would get physically tired during this process, so I would stop and take breaks. I would do it again. Believe it or not, I simply would not let my present physical difficulties get in the way. I know it would have been very understandable just to stop; however, that is so unlike me. Also, outside of all the therapy I am doing, writing was a distraction. While my subject matter was about what I have to deal with now, there was a certain "project" aspect to it. I like projects.
Romy applies her previous interest and scholarly work on the body to her new physical reality. Her positive attitude and unique philosophy are truly inspirational.
The chapters are as follows:
No Choice: Introduction: an overview of what happened to Romy and how she felt
Why Not?: relates her philosophy on issues surrounding the surgery and the aftermath. It sets up a dream motif, and discusses that she is experiencing "Disability and Cyborg Drag;"
Sure: specifically deals with her symptoms and the type of brain tumour she had;
Hurry Up and Wait: deals with body issues and what Romy has learned from this ordeal;
Oy: is her 'reality' chapter, it also deals with her current vision problems and her avid interest in popular culture;
James-Paul:or Jamie was a close friend of Romy's who died six months before her surgery. He was an MD and he asked her to be his spiritual adviser-a non-religious endeavor.
Mush: deals with the feeding tube, the food she was initially allowed to eat and what Romy does not eat now;
What A Concept deals with her friends, family and that it was not surprising that new people were a part of her life;
The Wormhole: Deals with the death of Romy's grandfather, that her grandparents survived the Holocaust, her Jewishness, the corridor she used to take in the hospital to where she said her first word.
Blank: Deals with the coma.
Something Funny This Way Comes: After the coma she listened to and watched lots of Comedy tapes including Seinfeld and Ellen Degenneres;
Wind Me Up and Let Me Go: deals with Romy's love of coffee, her rehab and therapists in Toronto;
Before: Before she went into the hospital Romy did many things, visited lots of places, and lived in Paris, France; Montreal, Quebec and Toronto, Ontario.
C'est La Vie deals with the birth of her nephew and how she was brought back to an infantile state in the hospital;
Queasy: Her take on 'resistance' and how she moved to Montreal to live with her parents.
Aha: Deals with the various challenges of Romy's situation;
Like Watching Grass Grow: Romy's physical recovery and that she has been called a "witch";
Que Sera Sera: What the future holds for Romy Shiller.
About the Author
ROMY SHILLER is a pop culture critic and holds a Ph.D. in Drama from the University of Toronto. Her academic areas of concentration include film, gender performance, camp and critical thought. She lives in Montreal where she continues her writing.