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.
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.
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?
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.
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:
