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