Romy Shiller, a medical mystery, not only tells the story of her brain surgery, lengthy coma and Akinetic Mutism, but she muses about reality, death, time, popular culture, psychic phenomena and dreams.

She applies her previous interest and scholarly work on the body to her new physical reality. Her positive attitude and unique philosophy are truly inspirational.

You Never Know, A Memoir by Romy Shiller, PhD. 

No Choice: Introduction

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.

Although what I went through was quite unique, my story was never a subject for a book – although, of course, it has become one. I continue to live the story and I could guess the ending, but I would rather leave it unfinished. To be quite honest, I prefer stories that are open-ended. I know this bugs many people who would prefer closure, things neatly wrapped up, but what can I say? That part of my story is not written yet. In my case, it would be very satisfying to know the end. But I do not. I know what I would like to happen. Whether it does or does not, only time will tell. These are the cards I have been dealt – like them or not.

I am glad that I can write this book, but I am a writer (amongst other things) so writing about what happened is second nature to me. I guess what I want you to know is that writing continues to be pleasurable to me. Even if I am not tickled about my physicality at present, at the very least there is that.

I do not have a loving and knowledgeable partner in life to mediate on my behalf medically, but I do have parents and brothers with a vested interest in my health and welfare. I feel so lucky to have them. They were, and are, a great resource to me. When I was in the hospital, they were all quite extraordinary. Faced with an imminent challenge, they really stepped up to the plate.

At times, I get ticked off. I am only human, after all. I do not want to be anyone’s mission, yet I find I am often people’s lesson. On an esoteric level, this is amazing; but on a physical level, I really do not appreciate it. I am not a so-called guinea pig. Lessons are interesting notions. I feel we can learn things vis-à-vis other people or situations. If I get hurt, however, that’s a different story. I have little tolerance for these kinds of mistakes. It becomes my lesson and I may not choose to participate any longer. For me, the idea of “choice” is a liberty I have here. Options are very good. The thing about esoteric lessons is how we choose to react to them. Personally, I love to see how this plays out in others. Sometimes I get quite disappointed, but this is about expectation, which I try to avoid. Expectations are so difficult to deal with: They are a major challenge.

I was pretty ambivalent about getting my PhD Now I am glad I have it. I like being called Doctor, even though I am not a Doctor of Medicine. I learned a lot and I know it speaks to my dedication, stamina and skills in addition to my intelligence. Maybe I need this degree because of the preconceptions that go along with disability. It seems to stun people when they find out. I am more than willing to see rationalization in this now. I am so glad that I have this in my pocket, whatever the reasons I might use now. The degree is not only an identity, it is part of my personal evolution.

I know that I have incentive enough to try to recover. Reminders, though well intentioned, feel insulting. And I do try, but I am also painfully aware of my physical limits at present. I believe I will overcome most of these in the future. Whatever disability remains, I will deal with. For me, there is no alternative; there is no choice. In addition to the earlier incidences, what you are about to read is where I am now.