It's so subjective
"all of them have something special"

"I'm Not Dead Yet!" -- Monty Python

I was a little hesitant about putting up that last post, and I see that I had cause.  All of the hugs and messages of support have been wonderful, but I’m very sorry for causing distress to people who care about me.  That essay is as truthful as I could make it, but of course it’s not the whole truth about my life these days which, in general, continues to be very good.  I get grumpy sometimes (as do you, I’m sure!) but I’m never depressed.  I have a wonderful life. 

The essay came about because I’ve got these couple of non-TM related appointments coming up to see what might be done about what I referred to as these new, mundane pains.  I’d been thinking about how best to explain how my pain perception is scrambled to doctors I haven’t met before, who may not have much experience with people with similar conditions.  A few days ago, our unseasonable warm spell ended suddenly – temperatures dropped overnight from highs close to 80 to highs around 40.  Thinking about how my body responds to cold, I realized that it was very similar to how I was trying to understand the effects of the pain on my leg muscles.  When that realization bloomed, I knew I had the seed for a short essay.  I spent the next two days working on it and when it was done I felt it was truthful and well written (I particularly liked the bit where the signal messenger expires after valiantly making their way to the brain).  So I did what I do when I write something I like, and posted it.

I can certainly see how someone looking at my description and trying to imagine themselves in that situation would see it as a horrifying nightmare.  For many people struggling with this and other rare neuroimmune disorders it certainly is.  But I’ve always felt myself to be an incredibly lucky person, and I continue to feel that way.  I am fortunate to have a disposition that leans towards gratitude rather than depression.  I can’t take any credit for that.  Just as some people’s brain chemistry drags them into the dark of clinical depression, mine turns towards joy.  The delight in small things.  When I think about the long walks in strange cities that I’ll never take again, instead of feeling anguish at the loss, I feel deeply grateful for all of the fantastic experiences I’ve had.  The same with all of the other losses.  I wish, wish, wish that I knew how to help other people, with similar challenges, feel the same, but I don’t.  It’s just the way I’m wired.

And then there’s the amazing Lynn.  Anybody who knows anything about dealing with people with chronic conditions knows that the burden on the caregiver is at least as heavy as the burden on the patient, in some ways far worse.  It can break relationships.  But ours was strong to begin with and while we had some serious struggles in the earlier years of my diagnosis, we weathered them.  Sparks still fly, of course, but I’m willing to bet we squabble less than the majority of people in quarter century plus marriages.  She lets me push myself as hard as I can, even though I know it sometimes terrifies her.  The balance between doing for me and enabling me to do for myself is a delicate one and shifts a little day by day.  She is keenly attuned to it.  We continue to have wonderful times together.  There simply isn’t anyone I’d rather spend time with or who I find more interesting.  The fact that we find ourselves in this place at this time in our lives in astonishing.  How can I not be grateful?

Marian & Josie, of course.  Marian, the great unexpected joy of my life, 13 when her mother and I got together, who I bonded with quickly, grown into a marvelous, strong, generous, kind, and smart adult.  Her daughter, born when I was 49, giving me a taste of parenthood and making me a much better person than I would have been without her.  Grateful (again!) that on the cusp of 17, she still wants to spend some time with us and is as fascinating to me as she was when she was a toddler and we explored growing up together.

Yes, the pain and the frustrations of the physical challenges are my constant companions, but I know that so many people struggle with far worse.  And I can still do a lot.  I spent my usual five hours in the kitchen on Christmas Eve preparing the spaghetti and meatballs sauce that we ate on Christmas night after I fixed our traditional Christmas brunch of potato pancakes and champagne.  I make my own lunch everyday and fix our suppers three or four nights a week.  I do the kitchen cleanup every night (except for the wine glasses, which we agree aren't safe with me).  I pick up the guitar for 20 or 30 minutes most days, learning how to rearrange things to accommodate my limitations.  Because I have more loss to work with (to quote Jessica Lange) my singing has become more expressive than ever.  I play harmonica now, thanks to, and in honor of, the late, lamented Dan Boutchie.

I have time to write, which has forever been my passion.  The legend says that in Renoir’s old age, when his arthritis prevented him from holding a brush, his assistants strapped the brushes to his hands, and that accounts for the luminous, shimmery quality of the late paintings.  I’m not there yet.  I can still type.  I can still hold a pen.  What could I have to complain about?

Stipe sings, “Everybody hurts... so hold on... you are not alone...”

We all hurt.  We all suffer.  We all struggle.  And even so, every day brings countless stories of people doing such magnificent things that my heart swells with joy and wonder.  Gratitude.


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