Daily thoughts

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.


4 Responses

  1. I had a good friend who at the age of 24 killed herself. She wasn’t sick or suffering, she just thought life was unfair. No one liked her new psychotic drug addled boyfriend (they killed themselves together) & she didn’t get into her Uni of choice. She just gave up. On the other side I knew a delightful little boy, who was born with so many physical issues, he spent most of his first 4 yrs in hospital. He struggled to learn to walk, talk & he never ate. Was always fed through a tube. He never complained. Every day was a new adventure & we always had so much fun, he had so much love to give. He was such a fighter but he died the day after his 4th birthday. Why couldn’t they swap? She didn’t want to live but he did. I dont always think that suicide is courageous.

    My thoughts are that you should be able to end your life with dignity when you feel the time is right but how do you know when that is? I know that 5 yrs ago I thought I couldn’t cope if things got physically worse, but they did & i did. It would have to be hard to know when to draw the line. Do you think just another 2 weeks? Another month?

    I do agree though, that it should be an option. We shouldn’t have to suffer.

  2. Hi LInda, I just LOVE YOUR NEW SITE!!- I have thinking about answering but have not gotten around to it. But keep up the good work. And your words have set me to thinking and I do mean to write!

  3. I just read this post for the first time today. Over the past couple of months I have had the most mind-numbing pain in my foot. I was a crumbling crying mess. MRI’s came back normal and the Dr. thinks it was nerve pain. I was sure I would actually die of a heart attack from pain. I was prescribed a short term dose of vicodin, they barely touched the pain. I’ve always got by on asprin, ibuprofen, and the very occasional tramdol. Here in Ohio the Governor has declared war on prescription drug abuse. My doctors don’t see me scream and cry and it was literally the most horrific thing I’ve ever experienced. I think that had it had not let up I would have definately had to consider “Exiting life”. I love living. it’s not giving up. It’s looking at all the pieces and trying to decide if it’s worth living. I am thankful it’s stopped for now, but I am scared of it’s return. I hope that someday it’s legal to get assistance for ending suffering here in the U.S. I hope that laws will change and compassion and common sense will prevail someday. I’ve known many people who have compassionately ended the suffering of there pets. It wasn’t giving up, it was “too much”. When will humans ever be given the same compassion that we have for our beloved pets? I am going to find that movie and watch it, thanks Linda. Janis Ohio

  4. Thank u for sharing ❤

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: