Romy Shiller

You Never Know: A Memoir – Introduction

In book on September 8, 2012 at 8:58 am
 

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; https://shillerarticles.wordpress.com/2011/10/16/you-never-know-chapter-2-sure/
  • Hurry Up and Wait: deals with body issues and what Romy has learned from this ordeal; https://shillerarticles.wordpress.com/
  • 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.

 

 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.

\

 

FOR IMMEDIATE RELEASE                                     

Romy Shiller, PhD and “medical mystery,” turns her shattered life into an inspiring adventure

  

MONTREAL, PQ ( CANADA) – MARCH 18, 2008 – In the midst of an eclectic career as a Toronto writer, academic, actress and communications director for an animation school, Romy Shiller was diagnosed with a brain tumour and lapsed into a post-surgery coma that lasted five months. She finally emerged from the darkness stricken with Akinetic Mutism—a partial paralysis that made it very difficult to move or talk—but still possessed her enthusiastic intellect and zest for life. One of her team of doctors and physiotherapists called her survival a “medical mystery,” one she sought to explore during her painstaking rehabilitation. Typing with “one bent finger,” Shiller created her new book You Never Know: A Memoir (Trafford Publishing), her musings on illness, rehab, pop culture, quantum physics, dreams and psychic phenomena. Applying her unique philosophy to her new physical reality, Shiller is a witty, fascinating and inspirational guide through life’s most severe twists.

Before her brain tumour diagnosis, Shiller enjoyed an offbeat career. A pop culture critic, she wrote articles for magazines as diverse as fab and Canadian Theatre Review and some of her articles were chosen to be included in university textbooks and courses. Having studied drag for her Ph.D. in Drama, Shiller enjoyed performance and had acted in a television series on YTV called System Crash. For doctoral research, she became a member of the very popular and acclaimed 90s performance art group called The Drag Kings where she did female to female drag. They were widely profiled in media such as Maclean’s Magazine, W Network, Xtra! to the Toronto Sun who ran a controversial photo spread – twice – of the troupe shot in the men’s dressing room of the Toronto Maple Leafs. She received a call-back for a lead role in Mamma Mia but was told she did not look old enough. Shiller had studied voice at the Royal Conservatory and with a private coach before that because she loved to sing.

Now in a wheelchair, Shiller can no longer sing or swim or dance. Because of her rehabilitation, she now has much more control over vocal chords and has more movement in her limbs. She even avoids certain foods for fear of choking. “The limitations of my body are substantial,” she says yet her optimism remains boundless, surprising everyone—even herself. Though her book describes her long rehabilitation in detailed, unsparing terms, “I really view this entire experience as adding to my life,” she writes. “I was prepared to deal with my own circumstance in pragmatic and spiritual ways.” Shiller has received warm wishes from singer Liza Minnelli while Raemali King, widow of King World CEO Roger King, includes Shiller on her personal prayer list, which she distributes around the globe.Whatever one’s beliefs, Shiller writes, “prayer is good energy” and, as she did before her surgery and coma, she continues to use the energy she has. “I now have an opportunity to help others by example. I strongly believe in doing what you can.”

About Romy Shiller

Romy Shiller is a pop culture critic and holds a PhD in Drama from the Graduate Centre for Study of Drama at the University of Toronto as well has a BA from McGill University. Her academic areas of concentration include gender performance, film, camp and critical thought. She was born and raised in Montreal, then lived in Paris then Toronto before moving back to Montreal where she currently resides. She speaks fluent French and English.

About her new book You Never Know: A Memoir

Shiller’s inventive and uplifting book uses her illness, brain surgery and coma as merely the starting points for a sprawling discussion of time, reincarnation, quantum physics, pop culture and the nature of life itself. By sharing her story with candid insight, good humour and gritty realism, Shiller hopes to infuse people with hope.

Book is currently available at amazon.com and amazon.ca and to order at all bookstores or order online at www.trafford.com/07-2081.  141 pages; quality trade paperback (softcover); catalogue #07-2081; ISBN 1-4251-3691-5; US$15.00, C$15.00, EUR10.25, £7.74

 


“The very title, “You Never Know”, suggests open-mindedness, which is the prerequisite for the unexpected to occur. This aptly describes the author in her journey through the adventure which is her rehabilitation process. A sense of humor, reflected anticipation and patient determination, all within the context of a worldly, educated and insightful individual, come together to culminate into a stimulating perspective of the adventure of re-integrating into life. The process has been as enriching to me as the book will be to all those that will read it.”

– Francisco Gregorio, physiotherapist, director of ERD Inc.


 

 

 

reader reviews

Amazing story from a talented woman, July 20 2010

This review is from: Amazon.ca

Romy Shiller began 2003 as an intelligent, vivacious and successful woman with a PhD in drama. Five years later she is the same talented academic with interests in pop culture, but has survived a sudden brain tumour and coma. She now has a speech impediment and is confined to a wheelchair, requiring a lot of assistance in daily life. She painstakingly typed this book with one finger, and that alone impresses me.

In You Never Know, Romy segues between the story of her coma and recovery, her current life, and reflections on the nature of humanity, being a “cyborg” and more. She ia a trained singer, but now her voice won’t co-operate. She is not enamoured of her new appearance. Nevertheless, she remains a “glass half full” person. I think this is what struck me most, her incredible optimism and drive to continue making the most of life in spite of circumstances that would probably overwhelm me.

The descriptions of her coma are fascinating – she remembers little of this time, but remembers dreaming and was apparently responsive at points. I imagine it would be helpful to anyone with a loved one in this circumstance, but she doesn’t dwell on the experience and the book moves back and forth through different parts of her life. She muses over death, Madonna, self-image, sexuality, her Jewish ancestry, romance, laughter and drag queens. This is no dry account of recovery, it’s these vignettes and meanderings which make the book particularly enjoyable.

Since this was published, she’s published two more books. I look forward to getting into “part two” of her biography.

http://www.amazon.ca/product-reviews/1425136915/ref=cm_cr_dp_hist_5?ie=UTF8&showViewpoints=0&filterBy= 

An Inspiration, February 18, 2010

This review is from: Amazon,com

A book that will truly inspire you and make you think. Romy talks openly about her life, difficult experiences with her health and her fight to survive. She’s a very strong woman and makes you feel like anything is possible. She reminds you to enjoy your life because you never know. Highly recommended book from someone that typed her story with an open mind and one finger.  J. Pelliccia

http://www.amazon.com/You-Never-Know-Romy-Shiller/dp/1425136915/ref=sr_1_1?ie=UTF8&s=books&qid=1280442003&sr=8-1

This review is from: WeRead.com

Very interesting look inside the mind and how Romy thinks. I mean that in a much more profound way than her general thinking; more about the workings of the mind. This is a book about someone who really does “get it”, living the reality not just talking about it. She lives what she preaches. I found one paragraph particularly deja vu…that the secret is in quantum physics. Not sure if that was meant to be so revealing or not – but it was. Not a book for everyone but for those who enjoy a deep exploration along the edge of life and existence and think outside the box. I am glad it was written and I had the privlege to venture into Romy’s mind. Fascinating place and fascinating book.

http://weread.com/reviews/1425136915/You+Never+Know+:+A+Memoir/FBK-142513

This review is from: Amazon.com  

The ultimate in individual and family courage!!! May 24, 2008

If I ever again start to feel that I or my loved ones are going through a difficult time I’ll just go back to this amazing story of Romy Shiller and recognize that it could be a lot more serious and scary.

This young lady’s fight and survival against all medical odds is inspirational. The fact that she’s obviously a maverick and subscribes to Frank Sinatra’s philosophy of “My Way” has no doubt been and will continue to be instrumental as she keeps making progress.

If you want to marvel at one young woman’s strength and the never say die attitude of her incredibly supportive parents I heartily recommend this easy to read but most meaningful book! Martin Baker

http://www.amazon.com/gp/cdp/member-reviews/A2R10Q4R0F8H6I?ie=UTF8&sort_by=MostRecentReview

This review is from: Amazon.ca

A truly inspiring story. No household should be without a copy! May 15 2008

Romy Shiller is a competent, intelligent, sincere individual, who has not only survived from a serious brain tumor removal and long term coma, but has also demonstrated unbelievable strength and perseverance that has undeniably been her driving force during her recovery. Living each day to the fullest, with an open mind, she is truly an inspiration to myself, both personally and professionally.
T. Frishling

http://www.amazon.ca/product-reviews/1425136915/ref=dp_db_cm_cr_acr_txt?ie=UTF8&showViewpoints=1

 

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