Some things flit through my mind and others stick…sometimes for days..sometimes forever.
Last night I watched a movie called A Short Stay in Switzerland starring Julie Walters as a physician suffering, and I mean suffering, from a disease that was eventually going to see her unable to speak, swallow, feed herself, walk and, in general, function. Her husband had died of the same thing and she knew full well what was ahead. She decided to leave England and travel to Switzerland where she could end her life without being labeled a criminal. Her three children were told and supported her although it wasn’t easy being told by your mother that she wanted to die. They went with her to Switzerland and it was heartbreaking to see what they went through. She did the deed and it was over.
The emotional relief I felt when she was finally at rest, when her jaw dropped and you knew it was over, was just incredible for me. I’ve long thought about this and often wondered if I’d have the intestinal fortitude to kill myself if I got to the point where my CMT life simply wasn’t worth living. And worst of all, if I had a life full of constant pain that couldn’t be relieved without being in a drugged haze. The pain I have had for the last 20 years is bad enough. I can’t imagine it worse but then I couldn’t imagine back then living with what I have already lived with for so long. The human spirit is an amazing thing.
I think the most difficult part of the movie was when she was saying goodbye to Flora, her beautiful cat. That just did me in. Animals don’t understand that you are going away for good. They just love. People understand and they love. Perhaps it was because my 15-year-old deaf/blind poodle was lying on a foot stool under the television that I felt so emotional about this scene. I know his days are numbered.
It takes tremendous courage to kill yourself, it takes tremendous courage to live on with the stresses of progressive deterioration. Either way, I think it should be our choice unfetted by laws or politics. We need to know we have the option of ending it when it simply becomes too much for an intelligent, brave, optimistic soul to go on.
If you get a chance to see the movie, don’t pass it up.
Speaking of stress, I had an e-mail yesterday from someone with CMT whose family is under a great deal of stress due to a conflict with a neighbor. He was asking if stress can make your CMT worse and have there been any research articles printed on it. I’ve been out of the CMT research loop for about eight years. But, he can search Medline for journal articles and any good university library can get them for him.
When I was in the loop and publishing the CMT Newsletter the question of stress came up often. We who have CMT know that stress can really do a number on our body. It only makes sense that if we have a compromised nervous system anything that unduly stresses that system will see a decrease in our ability to function.
When I asked the physicians who worked with me about stress they could only say that because they couldn’t, or didn’t have the opportunity to, measure the person’s level of function before the stressor, they couldn’t say definitively that the stress had made them worse. I think they were being asked because someone was proposing a lawsuit. We know if we’re being affected by the stressors around us. Trying to prove it is something else.
I remember a young woman with CMT who went blind after an automobile accident and from what everyone could figure out, it was from the stress. A seemingly simple fall resulting from catching your toe on a crack in a cement sidewalk can see you truly stressed for days. It changes your entire body composure, your homeostasis. That’s why we can easily fall again… everything is out of whack from the first fall.
Fighting with a neighbor is one of those situations that makes you feel helpless. It concerns your home: the place you are supposed to be able to retreat to for rest and healing. Unfortunately, the person you are fighting with is there, in the house next door, day after day. The problem needs to be resolved. The continual stress can be devastating.
I painted outside for three hours today. During those three hours I didn’t feel the heat, had very little pain and only looked at my watch when I heard the school bus pull up next door to left my neighbour’s daughter out at her driveway. It was some kind of heaven: water splashing over the rocks in the pond, the boat-tailed grackles gnawing and crackling in the cedars, the seeds from my Shademaster locust dropping like heavy flies on my drawing table. The bright colored pigments dropping off my brush give me more than food. Watching the pigment disperse over the water-laden paper is like watching feathers grow. The entire process lights up my brain and makes me feel alive. I have to paint more.
I promise I’ll make these shorter. It’s easy to go long; tough to be succinct. I have to get tougher on myself for your sake. Thanks for being there.