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?

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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.