COBRA and Crosby

Crosby claim:

I started telling you as soon as I found out last week, and have told you repeatedly since, that my COBRA account is ending tomorrow (November 30, 2013). I've told you repeatedly to STOP AUTOMATICALLY WITHDRAWING PAYMENTS FROM MY PRIVATE BANK ACCOUNT!

But I just received a letter from you stating that, as of 11/30/13, you are raising my monthly premium rates to $109.83.

If you withdraw $109.83 from my private account in December, 2013, I will hire a lawyer and sue Crosby, not merely for $109.83, but for $10,983.00, for emotional pain and suffering.

I know that "health professionals" make their livings off of sick people, so you increase our stress to make sure we stay sick... I just hope YOU get to experience this stress one day. AND I HOPE YOU SUFFER!

Handicap restroom stalls

This started as a theme about handicap parking spots, to which I added:

---

On a similar topic:

The handicap stalls in the rest room are for handicapped people. They are extra-large to leave room for scooters, wheelchairs, and walkers. They feature hand-rails so people with difficulty standing can safely sit and rise.

They are not extra-large so you have extra room to try on the dress you're considering - that's what the dressing room is for.

They often have sinks so handicapped people (who may be subject to embarrassing accidents) can clean themselves privately - not so that you can fix your makeup in private.

The seats are not high so that you can "feel like a queen" (yes, that's what I heard a non-handicapped gal use as her excuse for using the stall). They're not high to suit your long legs (your legs aren't that long!). They are higher than normal to make it possible for the handicapped to "transfer" (the medical term) from a transport device.

If you are using the handicap stall, and you're not handicapped, remember: as a result there may be a handicapped person in serious need, who may be less able than you are to "hold it".

Mind if I pee in your shoes?

---

Lisa (who I know has MS) replied:

Sorry, Marion, but I beg to differ.

There are no laws which limit the use of handicap stalls. There are laws regarding the use of handicap parking. I don't see why handicap stalls should remain unused "just in case".

---

To which I returned:

Lisa, I guess you don't have the standard MS bladder. (I know other handicaps that require similar support.)

If you'd ever risked heading home instead of waiting for the toilet, started peeing uncontrollably before you even opened your front door, peed down the hall to the bathroom (soaking your clothes from the waist down - including your shoes), dragged yourself barefoot and wrapped in a towel to your bedroom to find something dry to put on, threw yourself on the bed in total exhaustion, realizing that when you've recovered (in an hour or so, if you're lucky), you'd still have to wash the pee off the floor (in spite of usually having to hire a cleaner because you can't stand long enough to wash the floor)... and then burst into tears when you remembered that the front door was still wide open (with the key still in the lock)...

... maybe then you'd understand why disabled people need priority access to handicap stalls.

End-of-job/start-of-disability phone calls

On phone with the on-line pharmacy:
- (Me) My FSA will no longer be valid starting December 1, so is there a way I can receive and pay for my December shipment in November, so the co-pay will be covered by my FSA?

- (Me, in response to her question) No, I'm no longer an employee there. I've been on COBRA since July.

Many delays; finally forwarded to the COBRA expert - Surprise! A helpful person:

- (Her): Oh - so you're going on vacation in December (wink wink), so we'll send you the medication for December in November. Have a good vacation! Remember to pack enough clothes!

Meanwhile, I've learned not to assume that the people I'm talking with know what they're doing.

On the phone with the benefits folks:
- (Me): Please stop withdrawing money from my personal account to fund my FSA, because it's ending on 12/1
- (Her): My records say your FSA is ending on December 31.
- (Me): Really? How lovely! But could you please double-check? The Disability Officer told me yesterday that the FSA will no longer be valid as of 12/1. Are there any really new records that you may have missed?
- (Her, after some time on hold) Oh, you're right: your FSA will end as of 12/1.

... is that the end? No, I can't just phone and pull out of the automatic withdrawal... email first, and see what they'll demand next (and will they fix this before December 1?!)

Awards

I checked my 2012 SS report: The amount SSD is promising me is in line with the raise I got before MIT laid me off, so there's no reason to visit the SS office. The amount they've promised is the right amount.

So I phoned Prudential (MIT's Longterm Disability Program's agency) to tell them the amount, as they'd requested.

Thanks, the guy said. We'll need that figure, because we'll be reducing the amount we give you by the amount covered by SSD. [he tried to put it in a much more politic manner and got tangled, but that was the gist] Yes, you probably want to know: You've been accepted for the MIT program.

Can you work at all while receiving benefits? I'm not sure... hmm... I don't think so, but you should talk to people at MIT to be sure.

Is there anything else I can help you with today?

poison? razor?

Accelerated Cure Project volunteer spotlight

Lindsey of the ACP asked me if I'd be willing to be featured in their newsletter. Sure, I said, and wrote up a story answering the questions she asked. It was long... she'll trim it... but here's the original version I sent.

She asked:

• When did you first get involved with ACP, and why?
• Why did you decide to start Music to Cure MS? (describe a little of Music to Cure MS history and where it is today)
• What do you do to stay positive and motivated?
• Why would you recommend ACP as an organization to be involved with and volunteer at?

My answer:


I first heard about ACP in 2002, not long after it was incorporated (when it was still called The Boston Cure Project), and was intrigued: its goals and plans made so much sense! This was the most positive, active MS-related project I had run across. I wanted to do whatever I could to help.

I had studied music on a professional level, planning to perform opera. My MS diagnosis in 1988 made it clear to me that all the little problems and limitations which had been holding me back for decades were not going away - so it was time to find a new goal. Luckily, I already had experience as a stage director for opera and Gilbert & Sullivan, and it was easy to transition to a life as a stage director, concert organizer, and occasional concert soloist.

By the time I became aware of the ACP, the long hours required for directing were becoming too much for my MS-limited stamina - so it was time to find yet another goal. My desire to help the ACP looked like a good place to start.
I began contacting singers I'd worked with, seeking advice on creating a concert to benefit an organization fighting MS. The responses I got were not, "Is it worth the effort?", but, "When is it happening? What can I sing? How else can I help?"

As I've repeatedly found since starting this annual concert, mentioning MS to performers, audience members, sponsors, or others typically results in some people telling of friends or relatives with MS, and others admitting that they have it themselves. I visit local shops in the month before each concert, offering opportunities to publicize their businesses while supporting a nonprofit working for a worthy cause, and I find myself listening to stories of MS told by business owners who are eager to support us... while performers (including Barbara Quintiliani, the internationally-renowned soprano who performs in spite of her own MS) tell me their own stories. This is a key cause!

The first concert was held in October of 2003 in Arlington, MA. Our performance roster included over 20 solo and/or ensemble singers, three pianists, a 70+ voice children's’ choir, and a conductor. Our roster has shrunk to a more manageable size, but the concert keeps going. Every year I question whether it's worth doing again... and every year it's clear that everyone involved is looking forward to the next one.

We've never raised huge amounts. We've never enjoyed the overflowing audiences my performers deserve. But the concert is continuing, and always gaining new help.

Read about my first ideas in Boston Singers Resource: http://www.bostonsingersresource.org/resources/bsr-spotlights/marion-leeds-carroll/ and then see how the concert has grown over the years: http://singtocurems.org

You ask, what would your advice be for people newly diagnosed with MS?

• MS is different for everyone, and it changes for each MSer as the years go by. Enjoy what you have, don't mourn for what you've lost, and keep looking for the next good thing in your life.

You ask, what do you do to stay positive and motivated?

• I've fought depression all my life, since long before my dx. I often remind myself what I said when I was 19: "I have all eternity to find out what it's like to be dead, and only a few decades to find out what it's like to be alive." That's one thought that usually gets me over the worst spots. The second: making sure I have positive, happy people near me, doing positive activities, to keep me upbeat. Also essential: admitting my need for rest and solitude. (A friend shared this helpful Dilbert cartoon with me a couple of years ago: http://www.leedscarroll.com/Misc/images/resisting-a-rest.jpg)

You ask, why would you recommend ACP as an organization to be involved with and volunteer at?

• I'm tired of fundraising letters, calls and emails from organizations asking me to help them help MS sufferers. (Hello? I have MS myself, and rather than doing something for me, you're asking me to give you money? How can I be sure you're really supporting anyone besides your own paid staff?)

The ACP, on the other hand, doesn't claim to help individuals with MS. It sets out to support researchers as they ask hard questions, find good answers, and share their new knowledge, growing the data base the ACP set up and continues to build. (And we know the ACP, far from enriching itself on the project, is mostly led by volunteers.)

MS is incurable, progressive, and disabling, and we still don't really know what causes it. The ACP is focussed on solving problems that will help us all in the long run.

A MyMS Team member asked:

Does anyone here go to a counselor for assistance in dealing with MS and life? I am struggling to get through my day and wanted to know if anyone else goes to counseling to assist with MS and life/work balance?

============
I answered:

I've seen various therapists over the years, mosty for depression (even before I got my dx in 1988)

- some have been excellent help, allowing me to talk out my worries & giving me clear-headed advice and encouragement
- one got it totally wrong, spending our time listening to me and "topping" me with her personal solutions to her own problems
- a few have tried to talk me into antidepressants (not for me! - psychotropic meds always cause problems for me; some neurologists have tricked me into them, with bad results.)

A strange episode a few years ago changed everything: I started burting into tears for no apparent reason. I went to a therapist, desperate for help. I burst into tears in front of her, she asked me why I was crying, & I said "I don't know!"

My neuro finally found the answer: Psudobulbar affect. I cry when I turn my head in a particular direction, at a particular angle; I cry (instead of laughing) when something strikes me as funny; if I'm tired, I cry at anything slightly sad... This is an MS symptom, not an emotional problem: I'm not in complete control of the expressions of emotions, and give an appearance of reacting in inappropriate ways, EVEN IF THE REACTION HAS NOTHING TO DO WITH MY TRUE FEELINGS!

Realizing this was actually freeing: I no longer need to try to analyze things and figure out what childhood trauma caused my reaction. I'm free to live in the moment, and deal with problems as they come up.

It's frustrating in many ways: If I go to a funny show, I have to hide my face to keep people from seeing my sudden tears (trying not to sob out loud). I used to sing opera, but there are songs I can no longer sing because they make me burst into tears. I've embarrassed myself in public, trying to sing, losing control, and having to stop.

I'm going through a really bad period in my life (lost my job; PC pushing me into applying for disability; SSDI approving me at first try, but not giving me anything in writing) - so I looked for help this summer, and could not find a therapist to connect with.

In the end I've had to depend on myself and my friends to keep me going. I keep going back to my koan from decades ago: I have all eternity to find out what it's like to be dead, and only a few decades to find out what it's like to be alive... so I'll stay alive.

Patient Talk Blog guest post

Check out my guest blog post about last week's excitement - and plans for a better week ahead.

Government shut-down 2013

I have a dear friend who proudly declares herself not merely a Republican, but a Libertarian.

When I tried to point out (the last time I dared discuss politics with her) that some of us, having truly done all we can for ourselves, find that we *need* the governmental "safety net" set up by our fathers, she smiled and assured me that she, personally, would always take care of me.

The horrible degradation involved in turning, hat in hand, to a wealthy friend and praying for crumbs has obviously never occurred to her. In the Bible, it's expected that poor people will sell themselves into slavery; it's expected that the wealthy will leave the edges of their fields unharvested so the poor can glean... but we're also urged to set up systems so that the poor and the sick will be supported without embarrassment . That's what our fathers did - and that's what her co-party-members are seeking to destroy.

Perhaps she feels it's more warm-and-fuzzy to be protected by a friend, rather than supported by a cold bureaucracy. Sure! - but friends have their own lives, and aren't always there for the needy. My friend is about to move out of state. Can I still ask her for help?

It usually takes repeated tries to be accepted to SSDI. I was accepted immediately, with the ruling, based on my history, that I have actually been eligible since the year 2000. I've really done all I can! - but my doctor thinks I should be on Disability, and SS clearly agrees. I'm scheduled to go on SSDI in November... if SS is back by then.

My fuel provider, hearing of my lost job and impending SSDI coverage, urged me to apply for Fuel Assistance. From what I can see, I've been qualified for assistance for over a decade, so I should have no trouble receiving help - if the DHCD has any funds to release this winter.

Shall I ask my friend to pay my fuel bills this winter? How about my health insurance - will she pay the $4,751 per month for my basic medication, as well as my regular specialist check-ups?

Or must I glean from the edges of strangers' fields?

Good life with MS?

MyMs Team question:
So we all know that MS sucks, but is there anything good that it brought into your life?

========

My answer:

I had been putting off activities I needed for Life, but when I got my dx, I said, I'd better do all I can do before I become too disabled to do anything!

So I had a decade of performing, directing, editing a newsletter... all at a Community Theater level instead of the professional level I'd been hoping for... but it was good.

Then, when Life changed (disability revved up, husband walked out), I had a decade of using new on-line skills (building web pages professionally, using on-line graphics programs...) while continuing musical activities in a different manner (teaching singing, organizing concerts to benefit the Accelerated Cure Projec for Multiple Sclerosis - see singtocurems.org for details), and building a new relationship with a lonely co-worker... and it was good.

Then Life changed again: They laid me off from my job, and my doctor pushed me into applying for Disability. This has been horribly painful... but I keep finding work to do and people who need and want me. So - I have hope: The next part of my life will also turn out to be good.

Revenge

J comments about an email he received from the web list, looking for someone to build a simple site. "Oh, the Libraries web group?" I ask. "I'm not on that list any more." "No," he says, "not the Libraries list - it's a general U. list - I thought you were on it."

I spend a lot of time imagining sending an email to the unhelpful HRO who never mentioned any such list through all the months I begged her for help as my job slid down the drain. It has lots of words like "bitch" and "evil," and points out that, even though she has twisted things and backed me into a corner so that I can't sue my ex-employer for disability discrimination, I don't see why I can't sue her personally. I get very angry, and feel very bitter and depressed. I pray that she will suffer someday (soon!), as I have, thus becoming capable of appreciating the harm she has done me - the loss not simply of my job, but of the dregs of my health.

And then it hits me: She can't be hurt by anything I say to her. She will keep her job for as long as it suits them to let her keep it, and my feelings will make no difference to her life.

But I can be hurt by what I'm saying and thinking. I'm wasting my limited time and energy on negative thoughts and words, instead of helping others and myself, and building happy memories, plans, and hopes.

So I go out on my scooter, in the sun.

Circumlocution office

She phoned last Thursday, requested info I had already provided, & asked if I'd be in for the rest of the day - because, she said, she'd be phoning me with more questions.

So I stayed in all day. She never called. That was last Thursday... and she has never called again.

So I checked their web site (useless), & then called their office. My extimated wait time was 50 min - would I like to request a "call-back" when someone was available? Well, OK...

An hour later, I got a call from a non-native-English-speaker: I have to call a different number, and speak with (uncertain name - female, he insisted - but he clearly didn't undertand it himself). And of course, the office at that number closed early...

So I phoned today. And was put on hold for 15 minutes, while the friendly receptionist tried to sort out the answers... After a struggle, I got the right name (it was a man's name, not a woman's - in fact, when I pried it out of her, I recognized him as someone I'd spoken with in person 4 months ago)

Answers?
- The decision will come in "a couple of weeks"
- The mistake in their records can't be addressed until they've made the decision

Circumlocution office.

Seeking the source
of the pain,
I move my tongue, and find the tooth.

If we want that, she's the one to
I always turn to her if
We can depend on

she knows how it should
she can fix

You can depend

...I don't have the strength for
That takes more stamina than

Work Reimagined post

Posted on the LinkedIn "Life Reimagined for Work: Make Your Next Act Your Best Yet" board

Joyce Li says (in part), "I've defined my destination"

I reply:
@Joyce Li - You've defined your destination? Good luck! I've accepted the idea that I will never have an actual destination... life is about the journey.

I saw a great cartoon a while ago: a little girl saying, "What do I want to be when I grow up? I hope I'll be something that hasn't been invented yet!"

Joyce replies, "Marion, yes, life is a journey and the process itself is exciting. The destination gives us a sense of direction. It took a few years of soul searching for me to discover my destination. I am a writer, singer and a teacher at heart. What I am doing every day is moving me closer to my final destination."

I reply to her:
Joyce, I think we all have the same final destination... nothing you do in this world will get you out of it alive. And if you imagine that you are working towards a single career which you can inhabit for the rest of your life, you have a pretty wild imagination. Life doesn't work that way.

I, too, am a writer, singer, and teacher. I'm also a stage directer - I loved that, and wish I could still do it. There are a number of other things I used to love - things I lived for; things I dreamed of doing throughout my life, growing and changing, teaching others as I learned new layers of skill and wisdom.

Remember, most adults can be referred to as "temporarily non-disabled." Unless you die in your prime, you will come to a time when what you now think of as your "destination" has become your past, and your hopes will become your memories.

I'm the victim of an incurable illness that causes progressive disability. A lot of things that I used to live for are no longer possible for me. So I have to explore new options.

I lucked out the last time I was unemployed: I had an attack bad enough that I was incapable of working, so I took a course, learned a new skill - and ended up spending over 10 years in a brand new career, something that didn't exist when I was in school, that I could do in spite of my progressive disability.

Now that job is over. I'm still shuffling the cards in my hand: Some I must discard, much as I'd love to play them, because I no longer have the strength. (e.g. I loved being a stage director, but my limited stamina closes that choice.) I'm also seeing what cards I'm lacking: What new skills can I learn that will give me a hand I can play? Or how can I re-think the cards I already have, to make them into a playable hand?

My self-definition is pretty wide these days: I've spent over 25 years finding creative solutions for unexpected challenges, and that's what I expect to spend the rest of my life doing.

Is that my "destination"? Perhaps.

Unemployed, disabled, and older.

Posted on LinkedIn discussion thread "Unemployed and older"

I should start a new thread: unemployed, disabled, and older.

I started replying to Susanne, whose situation is similar to mine: I never made it very far up the ladder. People have been talking for a long time about "the color of your parachute", and about following your passion to live a fuller life ....well, that's pretty much what I did, right out of school, with the result that I never made a real living (like most artists), and have always been dependent.

In my late 30s I took a solid, boring, (low-paying) job to support my husband through an extra degree, thinking he'd then support me, and he did, pretty much (with temp/part-time help from me) for a long time... but ultimately his company shut down, and he's been unemployed (and well over 50) for over 5 years. (He also moved in with his girlfriend... but that's another story.)

Oh - did I mention? The good part of that boring job is that it gave me health insurance - so when I started having symptoms I couldn't ignore (probably as a result of taking that solid job) and got my diagnosis of MS (which I'd clearly had for over a decade, and which may have been the reason I'd stuck, instinctively, to freer jobs), I was covered... the condition is incurable, disabling, and progressive, but at least I get meds to slow progression.

I have not been able to work a full-time job since my late 30s. The one time I tried, I had a relapse and couldn't work at all for 6 months. But there was a good side to this, too: while too sick to work I took a course and re-tooled for a new career (note: I was around 50), which worked out to a wonderful part-time job (with full benefits) that lasted for over 10 years... before ending this summer.

So now I'm over 60, incapable of working full-time, looking for part-time, flex-time, telecommuting jobs (the only sort of job I can do by now). Another glitch: as part of a deal with my ex-employer, I'm not supposed to look for work at all just now, with the understanding that I'll apply for their long-term-disability program after 6 months... but their disability program is EVIL! If I'm accepted, for the first 2 years I will not be allowed to do the sort of satisfying work I was doing for them... and for the next 2 years I will not be allowed to do ANY work... and then I'll be out on my ear, without their support at all, expected to go on Social Security. My take? - I've applied for SSDI, which is less restrictive: I could get SSDI benefits while still earning pin money and keeping my soul nourished with satisfying work. If I get that, I plan to ditch the employer's plan.

Fortunately, I'm still the person I was when I was following my passion as a kid. I physically can't do what I did when I was healthier, and much of my dream is closed to me... but friends and neighbors, hearing my situation, have been giving me tasks that pay (under the table) for the basics, and keep my mind active. And I know I'll always find part-time/flex-time/telecommuting work, under-the-table or out in the open.

I'm sad about the death of my occasional fantasies: get a full-time, well-paying job & surround myself with the things normal people take for granted (smart phones? iPads? better shoes; better clothes; meals in restaurants; vacations...?). I'm sadder about the death of dreams that my condition makes impossible. But my actual life hasn't really changed much with the end of my wonderful job - I'm simply back where I was, with a few more skills to take to market.

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.