Tag Archives: multiple sclerosis

It’s all about the ^$&#*%^% attitude…

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One of the most annoying things about having a chronic disease (I have a few) is that people JUST WILL KEEP TELLING you it is all about having a “good attitude”. “Think positive,” they chirp at you, as they take off for exotic travel or even a job that you can no longer manage to do. Or toddle off for a day wandering through the shops, also impossible.

It’s seriously annoying and the official support people are bad about it too. I’m coming up to my 14th year officially with Multiple Sclerosis and what do I get in my email box from the MS Society but yet another perky article about someone who is ‘living well’ with MS.

Well, good for him.

I think in general I have a good attitude about the disease that is eating my brain. I work out, I take steps to maintain my abilities, I push myself to remain involved despite the horrendous fatigue and pain blah blah blah I deal with every day. I try not to complain. Because of this, people think I’m more able than I am, and when I bow out of things, they look askance at me, not knowing how much of my life I spend recovering (or rather, not recovering), lying on my couch like a beached carp. It’s not always fun.

And then they offer the helpful advice – which gets offered in piles despite my increasingly tired expression. “You should eat this/seek counselling for your inner trauma/exercise more/learn a language/try dancing/singing/avoid sugar/do pot/take supplements/meditate.”

Photo by Tima Miroshnichenko on Pexels.com

As anyone who knows anyone with MS should know (and there are a lot of you out there!) the disease is unpredictable, even by the experts. They still don’t know a cause (except maybe Epstein-Barr virus) and there is no cure. Treatments may or may not have a positive effect. Trust us, we’ve tried them. All of us with it try our best to live our lives within the parameters we’ve been given, and the people I know with MS have a sense of humour about it overall – we laugh with each other and find positives even without the help of our well friends.

But when the blues hit, and they do, both from the actual brain damage caused by the disease, and the heartlessness of its incurable, progressive nature, being told we need to change our attitude is completely enraging.

This is true for all sorts of chronic diseases – arthritis, diabetes, cancer. It’s as if the thought of having to see people actually inhabit their disease (which one must do to deal with it effectively) is impossible for people to stand. We suffer. It’s the reality. Pretending we don’t is like telling a suicidal person they should just get over it.

Instead, I wish people would be understanding, just be there, without the need to comment or judge or make a big deal of it. I realize this is a difficult request.

In the spring, I went to visit my son and his partner, and we went for a hike along a snowy ridge. By the time we were done, I couldn’t lift my legs adequately to take off the gripper things I’d attached to my boots. My son looked at me and without a word, bent to help me take them off. I felt like Vera Stanhope, when her Sergeant bends to put on her booties at a crime scene. No comment, no judgement, just there.

It was the perfect intervention. Not done with pity, not offered when not needed, not pushy or demanding of thanks. Perhaps those lucky enough not to have a chronic disease (YET) could take this example forward.

I know having this catastrophe happen to me has taught me a lot about how to approach the inevitable need to proffer advice. I’m still learning, have a long way to go. I was a nurse before my forced retirement and nurses offer help, even if it isn’t asked for…

But improving my attitude isn’t going to make one whit of difference to anything. So stop %$*^%#% telling me it is.

On anger, depression, Robin Williams, Terry Pratchett, and writing

I read an article yesterday by Neil Gaiman about Terry Pratchett, author of the fantastic, funny, wise, and seriously wonderful Discworld series. Neil was asked about Terry, about how he must be such fun.

Neil told a story of Terry, about how he’d been furious one time and about how he’d told Neil that it was the fury that drove him to write. He was furious about his Alzheimer’s. I felt a surge of recognition.

Though I try to out a good face on it of acceptance and “enjoy each day”, I am completely furious that multiple sclerosis has robbed me of my life. Scrape the surface of my cheer and you’re likely to see tears or rage. I spent years, years, educating my mind. I was moving rapidly forward on my career, heading for a position where I could have significant impact on things. I wanted that, I tasted that, I respected people with a mission. And then MS came and struck my brain. Cognitive assessments tell me I should concentrate on things requiring no more than 20 minutes concentration.
This is very true for complicated tasks, and , alas, my writing. So I’m trying to shift my focus to less verbal/executive/numerical things, to more generalized creativity, but I feel the loss. I feel it every day I get up and am baffled by simple tasks. It breaks my heart, every day.

And so I rage. And like many, I turn that rage inwards, towards depression. Part of the depression is because of the MS brain damage – perhaps the depression associated with Parkinson’s damage was the final push for Robin Williams, poor and wonderful man. Part is because, like Terry and Robin, I share the telescope-turned-backwards view of a progressive, disabling disease that will not just kill me, but will make me a crippled, incompetent, incontinent, dependent thing first.

It’s all about generativity. About the ability to contribute in some meaningful way. For Terry and Robin, perhaps the thought of no longer being able to be brilliant is/was too much. I’m not burdened by assumptions of brilliance – I’m nowhere near these guys on the scale. They bring (still) joy to millions, I might do the same for a few, and I’m content with that, most of the time.

Other times I grieve what I might have been.

And then I give my head a shake and vow to make every minute count while I can still manage those twenty minutes. So I pick up my pen, my creative projects, my advocacy, my friendships, my joy, and surge onwards…

Because it’s the rage that fuels me, too.


Creativity and madness

I’ve struggled with depression for years. It started with my multiple sclerosis and was the first symptom spotted. Coincidentally, I restarted writing.

My family always tells me I’m the creative one, the one who thinks oddly, out of the box (though I would argue my older brother is also gifted in this area – and my kids are wildly so). I know that, during my brief career in management, I was often on a completely different page than many. This led to feelings of failure and isolation and utter hopelessness…

So, now, I’m having a bad bout with the MS – blurred vision, muscle spasms, pain, confusion, the whole package. And depression. And I feel at these times, any challenge is beyond me, AND, at the same time, my life is meaningless if I don’t do something important. It’s a tough place to be stuck. So I decide to quit everything I am doing and try new things in a flurry of trying to succeed at anything, anywhere.

51TTMH+FdgLAlong comes Maria Popova’s excellent Brain Pickings today: Creativity and Mental illness. Sometimes, at my most paranoid, I think she secretly knows me, her postings are so appropriate for the day…

And suddenly I don’t feel so alone. There are many others here in the murk (with occasional northern lights and lightning) here with me.

Now all I have to do is decide. Do I quit the writing game? Or do I listen to my chafing neurons and continue?