Who Knew? is a continuation of Romy Shiller’s book You Never Know: A Memoir. Romy is considered a medical mystery and applies her previous interest and scholarly work on the body to her new physical reality. Romy’s intense belief that we can meet and overcome challenges prompted her to write this book. People expect distress when faced with a life-altering situation. Who Knew? proves that there are options available to everyone when it comes to facing challenges. Romy looks at internalized ideas about the body. She provides a new approach to physicality (how we utilize the body) and image (how we perceive the body). Our culture is obsessed with looking a certain way. Opting out of conventional modes of appearance is liberating. This book and Romy’s attitude are not about denial; they are about acceptance. Acceptance for Romy does not preclude change. It is more about blending realities, weaving the idea of identity. Fluctuation and adaptation are important qualities. Romy’s non-malignant brain tumour operation and subsequent five-month coma have left her in a wheelchair, with a voice/speech impediment called dysarthria. Romy Shiller is proof we can overcome our challenges.
Chapter 2: I always thought that nature was magnificent but I saw ducks in a pond and acted like I was six years old at a great birthday party. Warm wind was rustling leaves on a tree - I inhaled. A jazz band was playing in a park - I closed my eyes. It seems like the smallest things take on a new significance now. People find it strange when I say I feel blessed. I remember telling a neurologist that I feel blessed and she was shocked. I imagine some find my diminished physicality sorrowful and tragic. I had a coffee with a woman who I am sure feels I should be miserable and unproductive. Sorry to disappoint, I feel the opposite. While I know she does not want me to be unhappy, it would be expected. In addition to many things I feel blessed to be here. Ducks, wind and music feel magical to me. I do not take my existence for granted nor do I feel small things are insignificant. In lots of ways that which was beautiful to me is now heightened. I am unafraid of death but life can be very good. Even though I am utterly convinced I will be fine after life that does not take away from this reality. I went to a small Rose Garden the other day. The colours were varied and quite fantastic. I inhaled. Imagine my surprise when I discovered there was no scent. So I simply stared at them. Even though the right eye I see out of bounces up and down like one is on a trampoline, they were magnificent to me. I have a thing for flowers. One does not face a life-threatening situation and not change a bit. There are certain qualities about my personality that are foregrounded now. Aging might also be a huge factor. I am much mellower, less stressed, nicer and more productive. Certain qualities have been challenging like "patience" and slowing down. It is kind of ironic and somewhat discrepant, my mind is very quick but physically I must be slow to accomplish various simple tasks, like picking up or putting down a cup so I do not inadvertently spill the liquid inside because my hand shakes. If I think about it, I have to bring "being in the moment" to a very precise level. I do not want to give the impression that my life is a bed of roses. If it seems that way, I do not let it get thorny. Many things bother me but I have discovered that my discomfort zone encompasses a very high threshold. I can bear a lot. I remember I had cats that completely destroyed my furniture with their claws. I did not get angry. I figured cats will be cats. I have always been this way. I went out with a bunch of people and thought "holy cow, I must be strong." Certainly this thought was not precipitated by anything they did, it is just that I truly believe that most people who know me very well have a big problem with me. I often wonder, if Stephen Hawking looked different or if he spoke like most people, would his intelligence change? I do not fit into a stereotypical mold and I am sure that for many, many people I know that would be comforting. I am not invited to several things. This is hurtful and insulting but most of all it is so predictable. Do people imagine that if I thought I would be burdensome or if I knew the place was inaccessible, that I would participate? Is not getting an invite or explanation better? I am ashamed to say the following because many people do not have enough to eat...my lack of an invitation for many group lunches or dinners deflates me. I do not think that most people I know say "we will not invite a disabled person." If my disabilities prevent access to a certain place and everybody goes there then a disabled person is left out. This is not about blame it is about complicity and responsibility. There is collateral damage. I cannot access the stairs to where my nephews reside. I cannot visit them, and hence a relationship suffers. You do not have to be a genius to see the connection between disability and access here, eh? There is a cliché involving a good-girl disabled person. I think I am very nice but the way I think is far from a cliché. Like many people there is disappointment, heartbreak and challenges in my life. In a very lucky way, I see my bigger picture. I am able to negotiate the negative well. I was watching the film Groundhog Day for like the thousandth time and realized I might not like my condition but my choice is to do something with it. Every day it is the same thing because my physical changes are very slow. It is a long way from easy to be internally strong about this. I might not have "dark nights of the soul" but at times one wants to awake. What I realized when I watched the film was that my road, my path is to be very active without physicality. You know, I met a woman in my elevator who marvelled that she always bumps into me, "you could stay in your apartment," she said. An attendant was inspired by the fact I write books; "you could do nothing." I try to do what I can despite of my circumstances. In Groundhog Day, Rita says something to the effect that "it does not have to be a curse; it is how you look at it." My perspective does not regard this negatively. For me, my condition is an opportunity to live a new kind of life. Most people do not understand this. I am not living with pain, I do not have cancer, I do not have a debilitating terminal disease - I may not have the same body as you, but I am LUCKY. There are two sides to a coin. If I only focused on what I cannot do I would be doomed because there is so much stuff I cannot do now. I choose to focus on what I can do. Many able-bodied persons feel they should appreciate their status. Good, but if something does happen it does not have to be the end of the world. People have an idea of being trapped. As I have heard, we are our own jail-keepers. Even a prisoner can be free in the mind. There is so much bullshit in my life and I know that most people can relate to this. Life can feel harsh, cruel and unfair. At times I want to throw in the towel for sure. I often wonder at a lack of awareness and sensitivity. Most of my anger comes from other people - not my disabilities. There are attitudes in my life I consider very negative, hypocritical and ultimately destructive. Maybe my expectations are too high and I have to release these because everyone is entitled to their lessons. Bummer though. I think of what people said after the horrific events of 9-11. "We cannot let the terrorists win by being miserable or giving up." My resilience is a personal weapon. In the face of everything I do not give up, and if I feel miserable it does not last long. Some people do drugs or drink to deaden what they are feeling but I am sure that does not last and who would want to be a slave to addiction if they could avoid it? I was going for a pedicure and thought "la plus ca change..." My physicality may have changed but I am still me. I obviously internalized several ideas about beauty - now a pedicure is about what I like. I got a gorgeous plum shade (Siberian Nights by Opi) that I never had before. I was wearing sandals and later admired my toes in a café. My attendant laughed.
Romy Shiller is a pop culture critic and holds a PhD 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. Website: www.romyshiller.com