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?

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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.

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?

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.

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.

The Royal Hunt of the Cockroach

Let's see... My years in Manhattan (long ago, my children) were an exciting and happy period. I dropped out of grad school (/long story), took a low-paying and undemanding day-job, moved into my own little rent-stabilized apartment on the Upper West Side (remember when barely-employed people in Manhattan could afford an apartment?) and took over the kitten that a friend found himself stuck with when the roommates who brought her home moved out and left her behind. 

I was taking voice lessons and singing lots of Gilbert & Sullivan, a bit of opera, and some seasonal religious music... what more could I want out of life? Nobody thought about the price of oil back then. 

My apartment was on the 5th floor of a 9-story building, and the super kept the heat blasting so that it would make it up the pipes to the top story - so to keep from melting, I left all my windows open all winter. 

One day I was greeted at the door by a very excited cat, who kept rushing to the window, then back to the door, then back to the window. Sure enough: a pigeon was inside, perched above the sill. I'm afraid Kitty was pretty disgusted with me when I trapped the bird in a shirt and pushed it back out the window. 

We were reconciled the day the giant flying cockroach flew in. Living across the hall from the trash chute, I was pretty used to roaches... but this was HUGE, and it FLEW. 

I was nervous, but Kitty turned out to be a Mighty Hunter. I never knew cats pointed, but Kitty tracked that creature, found it, and showed me where to get at it, like the best-bred English Pointer. I flushed it out, it flew and hid again, Kitty tracked and pointed, I flushed again... until, with team-work, we got it trapped in a corner and I made the kill. 

Then it suddenly hit me: that was one flying roach. What will I do when its mate seeks revenge? 

The day came, and soon. There I was in the tub, naked, reaching for the soap, when I looked down to see a huge roach just like the one Kitty and I had killed, there in the drain at my feet. 

I could kill it with a sponge - but the sponge was on the sink, and the sink was forward and to the left... could I reach it without either stepping on the Fearful Flyer, or setting it flying into my face? 

Clever creature to attack me in the shower: no chance to call on Kitty for reinforcements. (I've had cats who don't mind water, but Kitty was not one of them.) I knew I couldn't spend the rest of my life standing in the shower turning into a prune - so I took my courage a deux mains, reached for that sponge, and succeeded: I found that the roach's mate, softened, no doubt, from grief, was an easy prey, even in my solitary state.