Sandals

How do you deal with a new, annoying symptom that looks like it's going to be permanant?

I've always hated wearing socks to bed. Cold feet are bad, too, but I like the sensation of bare feet under the covers. At least, I did - until I developed, not exactly numbness, but a sensory distortion in my feet that distances sensation... as if my feet were covered by socks. All the time. Including bed-time.

That started over ten years ago. Sometimes it's been worse, and even a bit painful - more like walking with fishnet stockings, or lumpier fabric, against my bare feet - but I've tried to accept it. After all, it isn't as disabling as my inability to stand long or walk far, with which I've also had to live. If I feel a need to complain, it makes more sense to complain about actual inabilities, not mere annoyances.

This has been a really rough patch in my life, which has caused stress, which has set off new problems. One result: I no longer feel like I'm wearing socks. Instead, I feel like I'm wearing rather tight sandals. All the time. I reach down to take off my sandals before, say, getting into the shower, only to realize that I'm barefoot, as I have been all day.

Given the "sock" business, I'm sure the "sandal" business will also last a long time, until something worse replaces it. I've been doing a lot of crying because of my rough year, and this annoyance is one more thing to set off my depression.

What shall I do to distract myself until I learn to accept it?

Pseudobulbar affect

Next we'll hear Vivaldi's _Il Cardellino ("The Little Goldfinch"), with Michala Petri, whose 54th birthday is today, on recorder.

Why is this performance the best I've ever heard? Why does the finch sound more like a finch? Is it Petri?

Why am I crying? PSA makes me cry at things that should make me laugh - is that why I'm crying? Or is it envy because Petri's only 54 and has had a career since she was 5, while I'm 61, my career never got going, and the little bit I had is gone?

Can I control my crying, and focus on the delightful sound?

Must I envy Petri for her talent, and cry at the thought of her success? Can I, instead, rejoice that the world has this beauty to enjoy?

Can I remember that this crying is PBA, not emotion? Can I stop looking for reason in this neurological symptom?

Can remembering that fact get me through to the true emotion I'm losing in this combination of symptoms and rationalization?

Stop rationalizing! You express inappropriate emotions. Your brain is lying. Do not empower the lie - fight for truth.

Dad's birthday, 2013

Mark wrote: Glad to hear life is treating Matt & Laura better & hope it is doing tolerably by Marion, too.

Dear Mark, Matt and Laura -

I think it's lovely that the country still celebrates erev Dad's birthday by setting off fireworks! I'm still proud of him, and still love him and remember him with joy.

Tolerably? Yes, I can just about tolerate life. I'm spending a bit less of my time crying and thinking of death. But after over a decade of receiving annual reviews that included only one complaint - "Marion has to remember to take her vacation!" - it's still very hard to live a life that is an eternal enforced "vacation"... there was a good reason I preferred to work.

I'm finding ways to fill the long empty hours with activities I can still physically (safely) perform. (The skinned knee from falling after carrying the laundry up the stairs is almost healed, and I'm timing things more carefully.) I'm becoming more secure in the belief that I'll be able to afford to pay people to do all the things I wish I could do, but can't. I'm slowly attacking the projects I've been putting off - some of them, for years.

The different flavors of Disability, Unemployment, and Social Security - from SSDI, to SSI, to SS Retirement, to MIT Retirement, to MIT's Prudential Insurance Disability program, to the John Hancock Long-Term Disability Insurance program I've been paying for through MIT, to COBRA, to the FSA account, to... (what have I missed?) are a constant torment, but I've gradually arrived at a point where I occasionally make it through an entire day without spending an hour or two on the phone with one or two of their representatives. I'm beginning to spend time on better projects: I'm recruiting singers for the annual Longwood Opera G&S concert on Aug 6, and will soon start on my annual Music to Cure MS concert.

I hope you're finding satisfaction in the day. I hope you're staying cool!

Love,
Marion

The job that made life worth living, that MIT kicked me out of, ended on June 3; on June 13 my former supervisor sent me a card, signed by everyone on the team, featuring vague wishes: "I wish you all the best" "Best wishes for your future endeavors" "Best wishes and good health" -

Oh, and "thanks," too: "We appreciate all you've done for the MIT Libraries" (If you appreciated it, WHY DIDN'T YOU KEEP ME???!!!) And from the supervisor herself, "Thank you so much for all your dedicated hard work over the years (YES, I WAS DEDICATED - AND WHERE DID IT GET ME??!)

It comes back to the New Yorker cartoon:

The winner

"Well, I'll hobble home now and try to get some dinner," he said.

I was in the kitchen, on the rolling office chair next to the fridge, holding the mustard I was going to put on the salmon. He was standing at the kitchen door, near the stove.

"Yes," I said, "Bursitis is painful. I had a fairly mild case of it in my hips last summer, but - it went away."

"It's not the pain so much," he said, still standing there. I wondered how I'd get to the stove to prepare my salmon. "It's the big lump of fluid rolling around in my knee, affecting the functioning of the joint. That's what bursitis is, you know - a swelling of the bursa around the joint, caused by an accumulation of fluid. It makes the joint harder to use." He demonstrated with some clumsy knee motions. "I guess it's not surprising, given what I've been going through all year."

"You mean, the flood, and all...? " He understood that I meant his project to look through every object that had been in the thrice-flooded basement, to decide what to salvage. It's been over a year since the last flood, and his possessions have stayed out in the yard, in the rain and snow. It's taking extra time to look through them because he no longer lives in our house; he left me and moved in with his girlfriend right after the last flood, right about the time I started having trouble standing and walking.

His mother was always vaguely sickly. His father always had to take care of her. Her wishes and limitations had to be taken into account before any plan could be solidified: Are we going to visit the grandkids? Yes, if she feels up to leaving the house. Are we going to church? Not this week; she isn't up to letting anyone look at her.

So the sickly one always won.

I contemplated transferring to the chair next to the stove. It's a stool, really, and it's tall enough to let me to work at the counter. So I'll be able to squeeze the mustard onto the salmon without standing - but I first I'd have to get to the stool. I can walk. I will walk. But then I'll sit.

themail@newyorker.com To the editor: That treadmill desk (May 20, "The Walking Alive", Susan Orleans) sounds lovely. I wish I could use one! Unfortunately, at this point in the progression of my neurological condition, sitting is a way of life:  My home features seating very few feet. On bad days I use my rollator (wheeled walker with seat) to get from room to room.  I rejoice in the hours I spend sitting at my computer, working or socializing without fear of falling and breaking another bone (as I did last summer) or of simply tiring myself to the point of cognitive/emotional malfunction (as I do nearly every day). I do not rejoice in the thought that one day my seating kluges will no longer be sufficient, and I will be confined to a chair for the rest of my life. The current fashion of demonizing sitting is painful and frustrating to those of us who have no other option.  Instead of scolding the seated, how about suggesting alternative exercises?  No, not swimming (a common suggestion) - how would I get to a pool without help?  How would I shower off the chlorine?  How would I get home?  -- I'm talking about isometric exercises, seated or reclining exercises... things we seated folks can do by ourselves, as simply and easily as the "walking alive" can walk at their desks.

Apoptosis is not an option.

I have to stay alive for the sake of others. Apoptosis is not an option.

OK, so I won't sing Und ob die Wolke at the staff concert. I'll sing O mio babbino caro... boring, and I can't even sing it well any more. And it turns out Bill is an excellent tenor as well as a decent accompanist, but he's too busy keeping DSpace running to think about singing these days... even so, he sounds dam good... better than me.

Apoptosis is not an option.