Stop and Smell the Roses
There is a point where in the mystery of existence contradictions meet; where movement is not all movement and stillness is not all stillness; where the idea and the form, the within and the without, are united; where infinite becomes finite, yet not.
I have always thought that nature was magnificent, but recently 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 coffee with a woman who I am sure feels I should be miserable and unproductive. Sorry to disappoint, but 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. 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 eye I see out of bounces up and down like it 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 in the foreground 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 that 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 that 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 believe in a metaphorical "inside" of the body. I will just say that I feel as though I am co-existing with an image that feels anomalous. The outside world might perceive me in a very wrong way.
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 once 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, it would be comforting if I did. 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 I would participate? Is it better to not get an invitation or an explanation?
I am ashamed to say the following because many people do not have enough to eat, but my lack of an invitation for many group lunches or dinners deflates me. I do not think that most people I know would say, "We will not invite a disabled person." If someone's disabilities prevent access to a certain place and everybody goes there, then the 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 challenge in my life. In a very lucky way, I see my bigger picture. I am able to negotiate the negative well.
I think that because my attitude is bizarre to most people I know, I need to explain a few things. This is not the path I would have chosen, but it is my path. Sure, it is very difficult and different than before, but there is a chance here to experience something new. I am not the kind of person who would succumb to a so-called crisis. I look for chances in life, and to me, this is a very interesting chance. Again, I would not have chosen it, but I can deal with my condition. Maybe I have the opportunity to transform how disability is perceived. That would be an honour indeed.
I was watching the film Groundhog Day for, like, the thousandth time and realized that while I might not like my condition, my choice is to do something with it. Every day 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 I want 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 that I write books: "You could do nothing." I try to do what I can despite my circumstances. In Groundhog Day, Rita says something to the effect of "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 a fear of being trapped - in this case it would be by circumstance. 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 the lack of awareness and sensitivity I encounter. Most of my anger results from other people, not my disabilities. There are people in my life with attitudes 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 ça change." My physicality may have changed, but I am still me. I had 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 had never had before. I was wearing sandals and later admired my toes in a café. My attendant laughed.