Self-activating

"I'm trapped in a self-activating engine that evolves and seeks decay." Sabri Hakim
Well, aren't we all, really?
I'm plotting my evolution over the next while after I move to the big city, where opportunities abound for physical exercise, arts, pottery, jewelry making, mind expansion...while recognizing the way my body is seeking decay.
Can I sign up for cross-country skiing lessons now, in the summer, not knowing how I will be in January, if I will be able to walk, let alone ski in January?
Today, walking home, my right foot tripped me several times on the uneven pavement. One time I nearly tipped forward into a fall, even with my cane. How fast the decay? I don't know.
Can I sign up for hand building pottery, or will my hands be too weak to press the clay into shape? Will they spasm with pain after each session, or will it strengthen them? I don't have any idea.
Can I not sign up for these things and concede defeat? I don't think so. I hate being defeated.

I think, as always, I'll plunge forward, grabbing life with both hands, pulling on it hard and hoping I can hang on.
I'll sign up and activate myself, lest I perish in an explosion of boredom and self-pity.
But I'll know that I may not be able to hang on, for all that I want to. Sometimes, despite myself, the grip fails, and things drop to the floor.
It's not defeat, really. It's just winning the alternative. Right?

Exploring Insomnia

Lately I've been exploring insomnia. I blame my radio reception. I used to turn on CBC late night when I couldn't sleep and the ongoing news stories about countries all around the world would usually ease me off again - unless it was "Radio Africa, rise and shine", which is accompanied by loud music. Now, in my rural sound-proof zone, I'm stuck with a top 40 station and try as I might I can't get my legs to stop trying to dance. I'd try silence, but the chattering monkey mind just won't let me, and even if I ease it off into some quiet mumbling place, my body plays traitor and the leg pains start. Or I twitch. Or I can't resist tracing out where my numb bits are.
It's frustrating. I am so tired already during the day and then to not sleep puts me even further behind on my energy imbalance.
And don't the thoughts at 3 AM make for restful slumber? Right now I am spending a lot of potential sleeping time thinking about the minutae of my move. I realized with a start I packed part of the internet access I am supposed to return (those darn phone filters). I obviously packed my satellite receiver, but have no idea where or when, and it was foolish as I don't need it. My important documents have gone walkabout. My house is in a total disaster state and I can't see where anything is at the moment, yet I am too tired to do anything about it. And then I get thinking the thoughts of a single person late at night....
Why am I alone again at night? Why don't I have anyone here to help me, to comfort me? Why can't I lose weight and be more attractive so I won't be alone at night? Etc. Then I vow exercise, eating right for the next day...
But when daybreak arrives, I am too tired to function, so do neither...
And, all alone in the town that always sleeps, I wish some sweet coppers would come knocking at the window, just for the company. They'd have to bring the cake, though -I've already eaten all of mine.

body and art

I'm not only my spirit but my body, and who can decide how much I, my individual self, am conditioned by the accident of my body? Would Byron have been Byron but for his club foot, or Dostoyevsky Dostoyevsky without his epilepsy?

W. Somerset Maugham, The Razor's Edge, 1943

Exploring hope

Way back in high school, I taught myself "advanced Placement" Biology - the course that was supposed to get you out of the first year of University Biology. There were no classes available, but I had an understanding teacher to mentor me and I did well enough to pass the exam and get the credit. What I remember most of that course was my dissection of a fetal pig. I worked my way through the poor piggy's body, but the biggest day for me was the day I dissected the brain. I felt reverential, although piggy's brain hadn't developed much in its fetal life. But I knew then I was touching something magical, holy, beyond understanding.

Since then I've had a fascination with neuroscience, which seems oddly appropriate given my MS. Sometimes I think the body knows what is happening to it before it shows clinically...I adore reading and studying about the marvelous things our brains are, the PET scans that isolate areas of response, the amazing system that takes a few chemicals and uses them to regulate everything from scratching our noses to singing to figuring out our taxes to thinking about God. It is astonishing.

I just opened a book by Norman Doidge, MD, called "The Brain that changes itself" - all about brain plasticity and the miraculous way brains can, if not heal, redirect their energies to covering for lapses. The first story almost made me weep. It's about a man who had a huge stroke and was rendered immobile and speechless. He was taught to reorganize his brain by his son, who spent hours teaching him to progress as children do - crawling to walking, sounds to short words to long sentences. This alone was wonderful. But when the father died, several years later, on a mountain climbing expedition (!), the autopsy showed that over 90% of the nerves through his brainstem, that most important of parts of the brain (The bit that regulates basic functions, balance, breathing, etc.) had been destroyed by the stroke - the lesion was still there and had not healed, but the brain was able to work around this damage.

Inexplicable, and thought impossible. So many stroke sufferers are given the standard 4-8 weeks rehab and then left to live with what they have left at that time. But both this story and the tale of Jill Boldt Taylor's stroke recovery prove that this is not enough. More recovery can happen...

So of course, this being an MS blog, it does occur to me that some of the same things should be possible for MS sufferers. But how to work with this changing disease to reroute what must be, essentially, like construction season in Canada - pylons up everywhere, sections being repaired in unusual locations, new areas of destruction created daily, slowdowns and big lumpy bits. It's an interesting thought. Can we create side paths, detours, that would allow nerve impulses to wend their way around the changing landscape, and if so, how?

The bad Buddhist

from the Karate Kid:
Miyagi: Wax on, right hand. Wax off, left hand. Wax on, wax off. Breathe in through nose, out the mouth. Wax on, wax off. Don't forget to breathe, very important.

I just spent the last few days trying to put a smile on the face of my 2000 Echo, newly re-acquired from my son and in need of some care and maintenance. As a poor student, my son didn't have the cash to maintain it - or the time. Anyway, I cleaned it, washed the upholstery, touched up the scratches, and put on a wax coating.
Then it came time to remove the wax. Wax on, wax off. By this time my hands and arms were begging for mercy. But I couldn't just leave it covered with waxy streaks....
As I struggled with the project, I got to thinking about how much I prefer the wax-on parts of life - the initiation of projects - rather than the tidying up of the finishing bits. I have untold numbers of unfinished projects and actively resist finishing things. I have to do my novel drafts in the "3daynovel" contest to force a deadline, otherwise I lose interest and put it aside.
I used to be a fifty-yard dasher in junior high school - the one track event I was good at. I've always been good at the rapid response to a challenge, much worse at sticking things long term...
Another learning this MS will give me. As a chronic disease, it's going to stick around for awhile. I won't be able to give it up or put it aside when it becomes tiresome. I'll have to deal with it as it comes, strive to be as complete as I can despite it. Instead of driving the agenda, I will have to sit back and just be.
Not my usual way, not at all. But a way of grace nonetheless. Maybe I'll learn something vital. Like how to accomplish things carefully, without overdoing it so that, unlike with the car, I don't spend days in pain following all out effort.
And to not forget to breathe. Very important.

Remyelination! It could happen!

Research on remyelination of nerve cells is progressing with collaboration - what a concept! Maybe maybe, this disease will be cured in my lifetime! Wouldn't that be wonderful for all the young folks that are being diagnosed now, at the start of their working life...
Fingers and toes crossed til they spasm....

It's a puzzlement...

as Yul Brynner as the King of Siam would say...
I feel completely discombobulated, lost, at sea. I've been packing up my house, getting ready for my move to Ottawa, and I feel like a blind person after the furniture has been moved. There is less STUFF about me, all of it tidily in boxes (or most of it anyway), but I feel at a total loss with what to do with myself. My interests have been packed. My big computer is in the shop, being antivirused. My leased car has gone back to its home, leaving me with an old vehicle that has been wandering the world in the caring but not maintenance focused hands of my ex and my son.
All of this change has created another mess of anomie. I can't seem to keep my thoughts straight, can't focus on what remains to be done. I forget to eat, snatching cheese on a fly by the fridge..cookies on a fly by the cupboard. Real food tastes alien. It could be another flare up, recovering from the past busy weeks, or maybe not having my stuff about it confusing me. Or maybe it's the endless rain and grey skies of this non-summer that is messing with my head - every time the sun comes out I get busy looking for things to do outside, then the clouds are back before I get out there!
In any case, I can feel my neurons shortcircuiting. I need rest. Lots of rest.But first I just have to do these few more things......

The black dogs

Churchill referred to his depression as his black dogs. It's a wonderful expression. Dogs follow you. They want to be with you even when you are tired of their company. They are familiar, and comforting, and warm. They come when no one else will.
And they pass wind at the most annoying times.
I've been battling my own black dogs of late. Although they are familiar and friendly, they do shed all over my life and I find myself with mouthsful of hair and the inability to swallow or speak. They seem to grow or shrink as my life goes, right or wrong.
About a month ago, they were very large. They curled up with me at bedtime, crowding me out of slumber, breathing doggie breath over my dreams, making it almost impossible to breathe. I spoke to my dog handlers then, asking for help. Some gave useful advice. Some ignored the huge behemoths sitting beside me. Eventually, life unstopped and the forward motion kept them running to catch up with me. They'd been lying about a long time.
But eventually they caught up, and it seems no amount of persuasion will shoo them away.
Perhaps they grow on the weight of my bad decisions, or the fatigue associated with MS, or the endless, creeping, subclinical pain that makes movement hard and joy harder.
Right now they are curled in the corner of the room, watching me. I throw them a treat now and then and they catch it in their jaws, swallowing rapidly so they can watch me with that curious doglike vigor. I don't want them any closer, so today I am running again, sorting, packing, cleaning, preparing. Perhaps the activity will wear them out and they'll sleep.

Paying paying paying for being disabled...

So here I sit, the eternal optimist, trying to face every day with the mystical, ever-changing MS with joie-de-vivre and and looking for the blessings hidden in this tornado that has invaded my life.
And then, a cow gets flung about in the tornado and kicks me in the head. In this case, a financial cow. Ah well, I think, what is money but happiness tokens? But sometimes the number of tokens becomes rather too low for comfort. Or some big floating cow kicks too many at once out of my pocket.
At these times, I can't help wonder how many times I will be made to pay for this thing that has happened to me. I've had to give up my job, I've become financially shaky, I've sold my house and left behind the dreams I had only a few months ago. I lose sensation, I lose my ability to walk, something that I have always loved, I lose my chances to plan for a future filled with new opportunities.
It is balanced with blessings - the time to write, the friends that have stayed by during my challenges, the people who try to help me. I am grateful for these, and other blessings I cannot enumerate. I'm really not complaining. There are so many that have far more trials than I have had.
But c'mon. It's time for a break. I thought I was getting one with my progress with a house sale, an apartment rental, new friends and possible love interests - but it appears there is a fly in my tornado soup, and he's doing the crawl. Quickly. In a very healthy fly way.
I'm just signalling the waiter that perhaps I could have another bowl. One with fewer bugs in it. I'm so tired of fishing them out.

Judgement

Judging you, judging me.....
We spend unconscionable hours carving the world into us and them, he and she, friends and foes. We obsess about what some guy on the street shouted at us, as if it were us he was shouting at, and not the world. We ascribe to ourselves so much importance that we think each and every movement or thing we say is being weighed and perhaps found wanting by others.
It's impossible with MS to keep this up. First of all, I can't think too much about what others think when I am working as hard as I can to figure out what I think! Besides, it's too exhausting to keep track of rights, wrongs, angers, frustrations. Much easier and better to let go, forget, move along. Accept others. Not that I should be a doormat - no -like all creatures we should move away from noxious substances - but those substances are perhaps only noxious to us - and who are we to judge their overall value?
I used to think I was important, crucial to the world, had meaningful things to contribute. I found myself getting angry at those who didn't find the same things important. Now I realize that, today, the most meaningful thing I can contribute is a smile to a weary mother, coping with sticky ice-cream laden youngsters, or a positive comment to an artist, or a warm hug to someone who needs one. We are only important in 5 minute segments. All we can hope to do is accrue enough good, caring 5 minute segments to make life worthwhile, and to make a contribution to the world of people around us.
And that I can do, even with MS. Even on a bad day.

Shaking the Magic Eight Ball

"The only thing that makes life possible is permanent, intolerable uncertainty; not knowing what comes next." Ursula_K._LeGuin.

It's what I like best about MS.
Seriously. Each day is filled with little wrapped presents, some old smelly goose eggs, some beautiful gems. Some are bland as rice, some are as sensual as a lemon tarragon sauce, or the smell of freshly rained on roses.

All of them are unexpected. And so the surprise makes them tolerable. If I knew what was in any particular box, it would ruin both the pleasant surprises and the less so.

I know in the back of my mind that the future outlook for this condition is not pleasant. I know that the numbness in my toes will never go away, that my failed dreams of being a pianist, a dancer, a potter, a painter will all likely never come true as my hands spasm and twitch, drop things and lose sensation. I know my plans to hike the Appalachian Trail or camp across the southwestern US are likely gone.

But today, I can walk and think and write and laugh. I can dance in the privacy of my living room. And those little boxes are enough on the good side for me today.