Romy Shiller

You Never Know: A Memoir – Chapter 3: Hurry Up And Wait

In book on October 22, 2011 at 11:20 am

Available at all Amazon stores online

Sickness shows us what we are.

Latin Proverb

Remember that not getting what you want is sometimes a wonderful stroke of luck.

The Dalai Lama

Rain! whose soft architectural hands have power to cut stones, and chisel to shapes of grandeur the very mountains.

Henry Ward Beecher

I tell people that this is a life lesson. What have I learned? I have found out that I am much more resilient than I thought. When we are confronted by adversity, we really see what we are made up of. It is like a mirror held up to whom we really are. I think that “mirror” can be many different situations. We may think we know ourselves, but what a reality check. For me, it was very sudden, unexpected and completely unpremeditated. My initial reaction and continuing positivism constantly surprises me. If I think about it, I imagine I should be way more negative. But I have few, if any, regrets and I feel that my life has been quite interesting. I suppose that this is a part of it. People say I count my blessings. I guess I do.

I have also heard that I am afforded a second chance. Perhaps this is what I was supposed to experience during my lifetime. I feel like I had to grow up, to do certain things, to be able to express myself in certain ways – I had to be ready. What I do not think is understood is that this feels like an evolution to me. I have to put all I studied regarding “the body” into practice. What I learned is a kind of reflection of my present situation. For some reason, I make a relationship.

I now get the chance to look at my own internalized ideas about “the body.” I know that many people would simply focus on their disabilities, so I am pleased I do this. There is a shift in my non-academic perspective on beauty, for instance. The way I look now has been a substantial issue for me. That this is one of my challenges feels synchronous and unbelievable.

My attitude seems very strange to many people around me, but I continue despite formidable opposition. I could be like most people expect – but I am simply not depressed or distraught about my condition. Many people see themselves in me. They gauge my reactions on how they would deal with a similar situation. This is understandable but not applicable. In the past, I rarely ever did what anyone expected me to do.

This is not about denial; it is about acceptance. Acceptance for me does not preclude change. It is more about blending realities, weaving the idea of identity. Fluctuation and adaptation are important qualities. I truly view this entire experience as adding to my life. There are some things I cannot do now, but what an opportunity to experience and learn new stuff. The way I see it, most people don’t ever go through this. This experience means a lot to me. In many ways, I choose to see it as a positive over a negative. There are other things I could have experienced, but maybe I did not need to. I am not sure that I could have learned as much from anything else.

By writing this book, I have had the unique opportunity to reflect upon my life so far. To say my life has been very interesting doesn’t even begin to scratch the surface. I am so glad that I can see this, although as it was happening, I didn’t recognize how special it was at all. I have heard that when you are dying, you “review” your life. I feel like I am “reviewing” sans death. There are some things I would change if I could. I know there are some horrible experiences that have happened to others that I wish would vanish, for instance, racism, homophobia, rape, incest, child abuse, etc. These have absolutely impacted on my life. On the whole, I feel incredibly fortunate. My life could be very ordinary, which would be fine, but in fact it is extraordinary. If this were a work of fiction, I’m not sure I would believe it. If my life were a narrative, well, I would appear larger than life. Believe me, this is a weird kind of recognition. I am not special; however my divergences have led to some fascinating experiences and lessons. These I would not trade for anything.

I never felt slim enough or beautiful enough. What a wake-up call, what a friggin’ realization! I know these are issues that many women struggle with, but what a major lesson for me. I used to be good friends with a model. Talk about always feeling like you just do not measure up. She would never make me feel inadequate overtly, but what a standard. Not because of her, I felt fat and ugly most of the time. I still deal with feelings of inadequacy. It is a huge paradox because I was in an industry (performance) that valued looks. She was also married to a model. Getting together with them was so full of meaning. What a stunning family they were to me. Of course, they also had a “gorgeous” baby. Oy. I used to be an actor, so I did have a version of what I looked like beyond my perspective. You do not need to act in order to know what your “reflection” is. I still held on to the belief that I was less than acceptable physically.

Even though I had lovers and people were attracted to me, it was difficult to accept that I was all right. And I knew better on several levels, yet this was incredibly challenging for me. A friend once told me to avoid beauty magazines because of my issues with body image. I knew they airbrushed everything, including bodies to make them even thinner, but they were so compelling. Even if it is all ideology, it’s a bugger.

On the one hand, I deal with certain body images and issues that most women have to deal with, like beauty, weight and aging. (Some men, too, of course, but that is a different book. I once wrote an article that dealt with men as sex objects entitled “I Should Have Smelled Him, Obviously”[1] Now I would write about the detriment of viewing men as objects. In this age of “metrosexuality,” this would be very possible. At the time, I wanted access to the “gaze.” I wanted access to objectification.) Many of these issues are tied into images in magazines. I strongly believe these aspects reflect the era we live in. There is also ideology, but even this shifts with time. Could it be that the body and time are linked?

There was a barometer that I wanted access to – to how I wanted to look. It didn’t matter that it was fake. I believe that is why there is a fascination with Barbie®. Many of us have heard of that woman who had several surgeries to look like her. Cindy Jackson[2] has these quotes on her Web site: “The new and improved Cindy Jackson: A bombshell who wasn’t born that way… she lived a real-life Cinderella story.” (Joan Rivers); “No one knows more about cosmetic surgery – from both sides of the scalpel. She’s living proof of her unique expertise.” (The Times); “A trailblazing pioneer, she did the first and original Extreme Makeover 15 years before the hit TV series. In another 15 years, they’ll be doing what Cindy Jackson is doing now.” (no author attributed).

I do believe an unreal standard exists. The unreachable can be incredibly alluring. A temptation to achieve the unattainable exists. Someone I know very well used to be bulimic. We can take things to the extreme. This is understandable.

I recently heard that some guy found me beautiful. I have such a hard time believing that. Some part of me knows I am fine, but some part is messed up for sure. I don’t think more introspection will change that. I mean, I am aware of my problem, but this is a big challenge for me. There exists so much pressure in this area.

Then I have to consider that I am a disabled woman, along with all the preconceptions that go along with the term “disabled.” I know in this sense that I am a bit of a warrior. I call what I am experiencing “disability drag” and, because I have a permanent shunt in my head to drain excess fluid from my brain, I call this “cyborg drag.” In many ways, I embrace my “otherness.”

I thought I always knew that the physical was a manifestation of our culture. That is, what we imagine we look like is predicated by social convention. (Notions of beauty and ugliness have changed drastically throughout history.) Now I have to live as a disabled woman. This is very difficult indeed. I feel like I am judged on what I look like now more than ever. I find I am even harsh with myself. Gaining a bit of weight seems more detrimental to some than being physically disabled. Shocking but true. These days, some people prefer to have partners with “meat on their bones.” In old days, gaining weight was a sign of health and beauty. I was going to say that I hope people learn from this. But everyone follows their own path, right? Maybe that’s the lesson. Who knows?

I have heard “if only you were as before.” Heck yeah, but I am not; and if I stay this way, I still figure I have lots to offer. Sure I look different, but if that is the measure of my worth, that would suck. I do not buy into that. No matter how difficult my issues about body image are, I have a hard time believing that.

I have learned, as a result of my current situation that it’s okay to ask for help. Patience and having to learn to slow down have become very important. I can’t stand waiting for anything or anyone. This is definitely a lesson for me. Patience is such a big deal now. I am no longer on my own schedule. I find I have to wait a lot. This really bothers me. So does dependency. To be dependant on others for help now is so hard for me. You do what you have to, I guess. I may not like it, and I would do things differently if I could.

Health can mean so many different things to me. On the one hand, I am very healthy. I do not have high blood pressure, high cholesterol, a heart condition or diabetes. I do not eat fried or fatty foods or red meat. On the other hand, I had this brain problem that changed my life. So health, to me, is completely relative. I ride a stationary bike now, primarily for cardiovascular exercise. I listen to music at the same time. It affords me pleasure as well as a “healthy” activity. The process of getting into the seat is quite the ordeal. I also require straps for my left hand to hold the handlebar and left foot to stay on the peddle. There is exercise before the exercise. I need supervision for now, which means I am never alone when I do this.

I have become incredibly adept at blocking out what bothers me. As you can imagine, there is little privacy now. It has become necessary for me to hold onto privacy as much as possible. This can take a lot of energy, but what’s the alternative? I don’t think people around me realize how taxing this can be. It might seem like a small or simple thing, but it does require focus. Maybe I am more modest than I thought. If I were a nudist, for example, I imagine part of this would be easier for me. I am far from a prude, but I feel what is personal is personal. In a major way, I have had to revise and reprioritize what matters to me. I would not ordinarily think about these things, but my life is not the usual now. I now consider what I used to take for granted. Thinking about stuff is a bonus for me; however, the practical implications are always present.

Before the first surgery, I really wanted to wash my hair, but during an MRI (magnetic resonance imaging) they stuck green tabs on my skull. I didn’t want them to fall off. They were beginning to slip down. I mentioned this to the doctors and anyone who would listen, but was told it didn’t matter. They were going to use these tabs as markers in relation to a camera to align my head during the surgery. I felt like the Bride of Frankenstein. They were not painful, but they did prevent me from doing certain things, like washing my long hair. I took a shower the morning of the surgery, I made an effort not to wet an IV that was attached to me, and was very careful not to wet my head at all. Later on, my mother told me that she and a nurse washed and cut my hair. The first surgeon would not shave my head, but they did later on. They had to shave the left side of my skull to insert the permanent shunt in my head. I had very short hair for a while, which I do not remember.

I was also very skinny apparently. When I was in rehab, much later on, my friend Jennifer commented on this and said I was “slippery like an eel.” A mysterious and beautiful woman, Jen has very long (to her waist), dark hair and is a fabulous theatre director. She created Theatre Asylum, an innovative endeavour, and I used to be on its Board of Directors. Jen rediscovered her Jewish heritage and introduced me to the Minsk synagogue in Kensington Market, Toronto. I have never met anyone so creative and imaginative. She is an adventurer of the heart and spirit.

Now I have an MRI of my brain every year as part of a neurology checkup. This consists of a dye-injected IV inserted into my hand for contrast purposes. I do not look forward to this, to say the least. Things could be much worse, but this is quite uncomfortable. It is a major pain in the ass. Additionally, there is always the possibility that the tumour has returned. Can you say stress? Knowledge is good, but what a way to get it.

When I became conscious, my close friend Daniel P., who is dark, extremely handsome, a brilliant human being and very spiritual – if there is such a thing as soul-love, I have it for him – brought me a beautiful orchid that lasted an uncommonly long time in the hospital. Now I notice that flowers in general last a very long time around me. Many people have observed this – I do not question it. This is kind of eerie, I suppose; it is certainly economical – I love flowers. A total stranger once gave me a flower at a shopping centre. I put it in a vase and it lasted so long one of my physiotherapists, who visits me at home, mentioned something to that effect. I just thought it was pretty. It also reminded me how very kind strangers can be. My parents’ friends Sunny and Lenny, whom I love dearly, sent me gorgeous flowers in a vase with a floral design around the top. They sent me many stunning items, but I have to say I adore the vase. It is completely fantastic to me.

In the Spring of 2005 I went to the Tulip Festival in Ottawa, where I took photos for the first time since I left Toronto. My objective, even though we were in the capital and there were the Parliament Buildings to see, was to go to this festival. I mean, wow, a whole festival devoted to flowers – my favourite kind – tulips. It was a veritable sea of tulips. Colours were grouped together. There was a host of colours. I felt like I must have gone to heaven. I found it really spectacular and I was thrilled to be there. My computer is now surrounded by pictures of tulips. Some I took, some my dad took. They might be inanimate, but they remind me of when I was there and how awesome they are.

[1]  Fab Magazine, No. 195, August 1-14, 2002, pp. 118-120.

[2]  See <;

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