murielle

LJIdol: Wheel of Chaos
Prompt: Quality
25-06-20


I was diagnosed when I was about thirty-seven/eight years of age with (what is now generally called) ME/CFS (Myalgic encephalomyelitis/chronic fatigue syndrome.) At that time, I had been ill for eight or nine years (probably much longer) with a long list of symptoms and though the catalog of symptoms has been changed for political reasons a few times since, mine have pretty much stayed the same. Political? Well, funding for research is hard to come by so changing the list of symptoms to align with some other similar disease makes the money flow a little easier. Long-COVID is our most recent companion disease.

ME/CFS is what is termed an invisible disease. That just means most of the time we who have it don’t look that ill, or disabled. I have been accused of malingering, just being lazy, faking it—whatever. Even had a doctor tell me once that while she believed in Fibromyalgia she did not believe in CFS. I really liked her, but did not like that.

So, Fibromyalgia? I also have that and MCS, Multiple Chemical Sensitivity. The trifecta! Sorrows come not single spies but...never mind.

What does that have to do with Quality?

Well, in Canada we have this little thing called MAID: Medical Assistance in Dying. So, there is a lot of talk about the Quality of life in this country. More, I imagine than in other countries where they don’t have MAID. Not too long ago there were two women with MCS who opted for MAID because it was too hard for them to find a safe place to live without exposure to chemicals their bodies couldn’t tolerate. My heart breaks for them.

Quality of life means different things to different people, obviously. Once, when I was facilitating a support group for those of us with any of these diseases there was a couple who came once, one had one of the above and the other didn’t. The other’s main complaint was that they couldn’t go dancing anymore. To someone like myself who has a very restricted life and really doesn’t go out except for medical appointments, once or twice a year to church, or on very rare but special occasions, lunch with a friend and who tries to be open minded, I had a difficult time wrapping said mind around that. But, for that spouse it was a hardship. Something they had shared that they could no longer share.

Recently, my pastor asked me to write an article about what it was like to live with ME/CFS. I said I would think about it but wouldn’t promise anything. Truth be told, I was stumped. Living with this disease takes all my energy, I think about how I’m going to feed myself, what I’m going to feed myself, when I’ll be able to shower and will I be able to wash my hair when I do. Everything I do takes a lot of thought and planning and prioritization. And there are some, I’m sure, who would say I have no quality of life. I disagree.

I can still love, feel joy and laugh, and reach out (by phone) to friends. I can still pray and write and read and knit and do many things that are gentle, slow activities that I enjoy enormously. And as difficult as my life may seem, I’m not interested in the alternative.

Back in the Fall, my doctor put me on a new medication. It was a disaster. I explained to her that it hadn’t just put me back a few weeks, months or even years, it had put me back decades in my journey to recovery. As heartbreaking as that has been, ending my life is just not an option. I suppose it comes down to how we each define the quality of our lives. If I can still comfort a friend going through a hard time, if I can still pray for those who are suffering, if I can still offer a little hope through peanuts and water to a squirrel or two, or kitty-sit the pastor’s cat for a week or so, I have purpose. I have joy. I choose life.

Deut. 30:19.