March 30, 2009

Listen to the rhythm of the falling rain

Listen, listen to the falling rain...
It was such a quiet day here today - just me, the mists outside, the cheeps of startled birds being hit by unexpected showers, the plink of raindrops on my downspouts, the tick tick of the drops hitting my windows. Soothing soothing silence. We forget, I think, the beauty of that silence.
I put music on some of the day, watched some youtube, but most of the day the loudest sound came from my clock, it's pendulum swinging endlessly to and fro. My brain, frazzled and shortcircuiting from pain yesterday and today and from exhaustion from pain, eased into itself like a snuggly comforter. It needed this - I had a conversation with a friend and could barely get the words to exit my mind - they were lost in the back somewhere, difficult to retrieve. Another gift from MS...
I'm off for a cup of Sleepy Time Tea and a warm bath before I nestle back into bed. The rain is still falling, gently, outside. It makes inside feel safe, warm, healing.

March 28, 2009

Oh what tangled webs we weave..

When first we start to believe....
Yesterday I felt great, super great,, body happier than it had been in ages. I actually didn't have any pressing complaints about its messages to me, I thought we had come to some sort of agreement. I exercised, but not too strenuously, just enough to get my body moving, and it felt good. I went for a walk.
And then bedtime hit - unspeakable pain. Writhing. I slept (haha) in my bed in all possible directions. No matter where I put my limbs, they were irritated, twitching, aching like toothaches all over my body. My feet spasmed, my legs jumped, my arms moved without my mentioning internally that it might be a good idea. My fingers played forgotten piano sonatas (from Stravinsky - some atonal something).
The only thing I can think is that some of the stretches I did yesterday aggravated a lesion in my spinal cord. I've always had problems with my neck, which is where the lesion is, and stretching my neck is not overly comfortable.
I've had a few nights like this. I lie there, too exhausted to get up, afraid of the pain that will scream through me when I try to stand (cos it does). After the first few agonizing steps, it's okay, but that first step is a doozie.
It is HORRIBLE. And now I'm afraid.

March 27, 2009

Looking out from behind my face

It's early spring here in this lovely country town. I'm striding along, cane swinging artlessly from one hand, balancing me as I weave gently from side to side. It's warm enough to go coatless - an unspeakable gift - but not one to be trusted, not yet, not til the plants kick in...and Easter is past...and the nights get above freezing...
As I walk along the road, past the Greek-Canadian-Pizza restaurant, past the storage facility located unattractively beside the churchyard, past the huge Catholic church that looks benignly down on the town, too old to have much vigor, I marvel at the concept that I've lived for over 50 years. It just doesn't seem right. Inside my head, I'm still less than 30, still wakening to the sun on my face, on my arms.
The cane doesn't matter. It's the inside girl who does, the one who is mentally running, skipping, filled with the joy of spring.

Age is an issue of mind over matter. If you don't mind, it doesn't matter. Mark Twain (1835-1910)

March 26, 2009

Movement & standing

All sanity depends on this: that it should be a delight to feel heat strike the skin, a delight to stand upright, knowing the bones are moving easily under the flesh.
Doris Lessing
So....insanity beckons....;-)

March 25, 2009

Life from the slow lanes - or guess when you are getting payment?

Oh, I am giddy. Totally giddy. First of all, I am applying for Employment Insurance during the worst recession we've had in years. Timely resolution of my case is highly unlikely. When I call the EI offices, I get: "Our call volume is high, please call back later" after which their automated call system hangs up.
And supposedely I am on EI for the next 4 months, at a whopping $440 a week. After the four months are up, I am supposed to be eligible for LTD. But my advisor there tells me there is often a 2-3 month wait while they clarify the doctor's diagnosis, etc. And I will also have to pay for my own health insurance, at a rate of $130 a month or so.
Plus, the health insurance doesn't cover all my medication costs (my MS drug costs $1400/month and it covers less than 2 doses, even if I pay for the most expensive coverage).
Meanwhile, I still haven't sold my house, still haven't been able to retun my car lease (needs more forms and approvals signed etc, etc) and on and on.
It's getting pretty grim. I was giggling helplessly on the phone with the insurance lady who thought it was great I had such a sense of humour!
And then she said, "Hope you feel better soon!"
I said, "Hey, that's the thing. I'm not ever going to get better. It's downhill from here."
Her response? "Well, it's good you can be up about it. The attitude will do you well. It's better than all those grumpy ones who call in..."
Endeavoring to be cheerful as I chow down on macaroni..

March 24, 2009

Split Personality

Love this photo. It looks a bit like what I feel - a series of photographs superimposed upon one another, the image of flight away from self, the stolid main figure.
I'm feeling a bit split, lately. On the one hand, I find the losses associated with MS to be mounting most unacceptably and just generally becoming a pain in the arse.
On the other, I have found this time off work liberating. The time needed to process my loss of livlihood, my current situation, my thoughts about my working life has been wonderful. I believe I've come to realize where my strengths are, where my weaknesses are, where I did well, where I erred.
As much as anyone can, of course. I am starting to shush my "social self" - the queen of shoulds - and give some room to my "essential self" -the queen if I want tos. It is feeling better all the time.
Of course, my want-tos may not be cans, so there may be some adjustments needed here and there, as with all things with this crazy disease. But at least I won't be spending so much energy on the areas where I feel I should - because usually I am wrong about that.
Tomorrow I go to the farewell party from my workplace for me. I am not really looking forward to it. First, I don't like goodbyes. Second, I really really hate insincere emotion, and there will be some of that there. And third, I don't know who will turn up. Could be really grim. Wish me luck...

March 22, 2009

Finding True North

I bought this book years ago, and have thrashed through it several times. I've written all over the pages, expostulating, cryptic notes with almost enough information to know what I meant. Right now, though, it seems singularly prescient. I recommend it highly. It seems to capture all the strengths based focus of Marcus Buckingham, Lerner's Dance of Anger and Dance of Intimacy, and Mind over Mood. It's also written in an engaging voice with a touch of humour.
I've found it intriguing and compelling, especially about the grieving process I am going through and will continue to go through with this disease. Martha Beck talks about the schism between our essential and social selves, and how our bodies somatize our emotional rejection of incorrect directions...
For the last three months of my work, I had a constant tear in the corner of my left eye. It got so bad I developed an infection from the constant dampness. When I left work, the tearing stopped. Was I grieving my anticipated departure? Or was my body grieving for where I'd got myself to, professionally? Or was it about something else entirely that I've somehow now dealt with, now that I have the solitude to dig through the long dark teatime of my soul?

March 21, 2009

Dreaming of dancing

In the morning, I lie in bed, listening to a radio station that plays a lot of my favorite tunes. I'm curled up under my covers, which I can't feel touching me, in a comfy viscoelastic mattress pad, which I can't sense. My body, weightless from lack of sensation, feels like air. In my mind, I start to dance - wild, Flashdance like pirouettes of grace and charm, spinning effortlessly, kicking my legs to impossible heights, twirling twirling, hair flowing outward, my neck supple and smooth, articulating my steps.
Today, I am totally light, airy, purged of the ropes that tie me to this earth. I spin and twirl for several songs, then stretch.
Time to start another day. I creak to a standing position, wincing with pain, lurching to my favored left side where my brain sends me regularly, grabbing the wall for support as I pull myself, crablike, down the hallway.
But in my mind, if I close my eyes, I can still see myself dancing, spinning, filled with forgotten joy of movement. I can't help but smile.

March 19, 2009


The numbness of MS is an odd thing - I can still move, still (mostly) organize my limbs to head to their appointed places, although the leg numbness is a more functional lack. I feel mentally numb, too, buffered from life, insulated from things. Part of it is most likely a self-preservation response to a life crisis - I know my crisis isn't as bad as some have, but it is a total annihilation for me, in so many ways. My world map has changed irretrievably and I'm lost. It would be terrifying if I allowed myself to feel it fully.
I'll have to peel off the layers of mental and emotional numbness, but it isn't easy. It involves grieving, and feeling totally shitty for hours and having eyeballs puffed up and leaky. It also involves physical activity, one of the things that makes me more aware of my physical space, my body, my self. That's not going to be easy, either, with a body that thinks walking across the room is quite enough for one day, thanks.
Had a talk with a good friend last night, who, although he has his own issues, also sees mine with unusual clarity. He laid some home truths on me, as it were, and my head is spinning.
But I'm bored with myself, bored with self-analysis. I don't want to look anymore into the pit that once was me. Usually, when I feel this way, I do something, anything, to end the numbness and distract myself from it - eat fudge, drink wine, take a man to bed. This time, I'm going to use the numbness as a tool, to guide me, and write my boredom with myself out.

March 18, 2009

Wheezing and wobbling in worn out shoes

Took my newly stabbed buttocks for a walk today - my first since my dear doggums went to another family who could play with him (as vs lie about and look at him). It was raining, so I had my Kansas City Star umbrella with me - it has all sorts of comic strips printed on it, including the ever-wonderful Calvin and Hobbes . It was a good thing, too, as the umbrella is tall enough to act as a light cane. It swings with a sufficient swagger to make the use of it as this less disabling than it appears.

So off I went, sauntering down to the post office, Queen's Radio Gah Gah playing in my headphones. It was the perfect pace down to the post office...

On the way back, I needed a slower pace - and I had stopped for coffee and a sit down downtown....The umbrella swung with more effect now, and my old running shoes developed a gasp to match mine - each step one shoe says "eeee", then "ahhh". Quite apropos.

Tomorrow, I'm wearing more cheerful shoes, to go with the cane I'm buying. It's all part of the new DA look - cheerful but deteriorating.

March 17, 2009

Acupuncture, or, Oy Vay, I have such a pain in the butt!

Went to my excellent physiotherapist today for an assessment of my legs as they are feeling distinctly weaker. She examined me and agreed, then suggested a technique she had tried for another MS patient that seemed to help her feel sturdier when she was walking. She inserted 3 acupuncture needles deep into my buttocks muscle, and attached them to a machine that sends electrical charges to make the muscles contract. She turned to electricity up to level 2, which was enough to make me cry out. The electrical current cycled on and off for 10 second bits for 15 minutes, then we switched over and did the other side.
Well, I'll wait to see what things are like tomorrow, but OH MY GOLLY, I am not a happy camper right now. My bum muscles are in serious spasm and my whole leg is unhappy, alternately sore and just plain toothachey. The rest of my body seems to have decided that since one part is cranky, the rest should get in on the act, and my neck and arm muscles are tense and sore.
So, I'm off with an antispasmodic to reduce the pain and a cozy bed to warm the muscles into relaxation. With luck this punishment will mean I can walk better tomorrow....

March 13, 2009

Fear and Trembling

The expression "fear and trembling" originally appears in the Book of Psalms, and recurs in the Yom Kippur prayer "Unetanah Tokef" - which describes man's inconsequential status of man vis-à-vis God, and his fear of the Day of Judgment:
The great shofar is sounded
A still small voice is heard
The angels are dismayed
They are seized by fear and trembling
As they proclaim: Behold the Day of Judgment!
Well, I don't think anything that grand is going on with me, but today I had a breakdown. I was at the dentist, and it occurred to me that I was never going to be able to afford the expensive caps they want me to get, that I would soon be losing teeth, that all of this was tied to my inability to work, that I still would have to spend hours being drilled by an unsympathetic dentist who lectured me about how I hadn't done anything properly etc., etc., pointing out that, yes, my life is one series of bad judgments and the MS is probably just a payback for them all.

It all hit me then, the thoughts of growing disability, the fears of dependence on someone, the loss of self this whole thing is causing me. Sure, I had pride, but most of that had already been beaten out of me. Sure, I thought I was valuable, but truth be told, none of us are. I thought I was independent, like Simon and Garfunkel's "I am a Rock", but no.

I am afraid. I am so so so afraid. I am afraid of losing everything, of being in a nursing home before I hit 65, of being unable to speak or write or see or drive or walk or sit or feed myself. I am afraid of the pain, which I am already getting to know. I am afraid of being alone in my pain and degradation.

I am grieving, and it's hard. I'm angry, and that's hard, too. It's unfair. There is no MS in our families, ever. Except now. They think MS might be tied to Infectious Mono, which I had, badly, from living in residence. No kissing involved. NONE.

I'm afraid today. Tomorrow will be better. Tomorrow, I'll be back to taking over my new, smaller world.

March 12, 2009

Mobility with style

So, as I lose my mobility, inch by inch, yard by yard, I am starting to examine the funky ways I can get around.
There are canes of course - which run the range from pretty floral collapsible things to long bull's penises, varnished and tough. I'd be tempted by the latter but men already have worries about size, so I think walking about with one that long might put an end to my dating entirely. So instead I am torn between buying a plain one with a comfy handle and painting it myself, and getting a fancy one like the photo.
Then there's the scooter option. I'm not enamoured of the walker idea. I'm hoping to do without that. I'm dreaming of a 5.5 mph scooter with a high street clearance that I can drive like a maniac all over town. I sense disabled activism in my future, as Kingston is not accessible by a long shot.

The problem is the idea of losing my walking ability seems novel now, just a minor incapacity as I still feel I can (mostly) walk. But like the numbness was just a fun thing to start (until it moved in to stay), as it gets more familiar, I am losing important things - my typing ability, for example (I can't feel the keys). And I am losing my ability to sew things cos I can't feel the needle anymore.
So I suspect the mobility thing might lost its novelty fairly soon. But in the meantime, I can dream of speed....

March 7, 2009

When you hit rock bottom....pick up those rocks and throw 'em

Feeling a bit like the alcoholic who finds herself lying in a public washroom in a train station with her head next to a toilet, wondering how the heck she got there today....
Went looking for an image that captured the feeling and came across the site you can link to from the title,, which had this funny saying on a T-shirt. I like it. Wrote myself a great big pity party post about all the things I've lost in this life: daughter, marriage, job, career, money, love, sensation, ability to move, strength, touch, religion, faith, home ownership, credit rating, car, you know, the lot. Some is due to my own decisions, which have been faulty generally - note to self - don't trust intuition! - But a lot has been due to this damn disease that I've been living with for years..
But there's one thing I still have, and oddly, a lot of MS patients seem to have, and that's this misplaced sense of optimism, the ol' weebles wobble but they don't fall down thing, the urge to find some way to go on, though the prognosis isn't good, the disabilities are nasty, and generally life sucks.
Maybe it's part of the disorder. But whatever, I'm grateful for it, and for the sense of humour that lets me pick up those rocks down at the bottom and juggle them, laughing as they fall (I have no coordination, remember?).

March 6, 2009

Attaining Nirvana, or life's lessons being learned

sometimes think my life exists to teach me lessons. Or like the demotivator says “Perhaps your purpose in life is to serve as a warning for others…”

I always feared people with mental illness and brain injuries (and pitied them) so I get given depression and holes in my brain

I always disliked needy people, so now I have a disorder that will require me to depend on the kindness of others.

I never cared about money, so now I am so deep in debt and so short on rations it has to become *the* thing I care about.

I’ve always overeaten expensive bad for me foods so now I have to drastically reduce my chocolate and eat more lentils.

I always loved sex, and now I am completely numb and can’t feel it, so I must focus on other sources of stimulation, like writing.

I always liked public speaking and persuading people, so now I lose my words and can’t control the tone of my voice, and must learn to listen.

I always liked to be DOING something, so now I have to sit a lot and use my brain.

I should be able to attain nirvana this way, at least.
If I come back in my next life as a cockroach, I’ll be pissed.

March 4, 2009

Finding my way

One gift this MS has given me is the need to completely redesign my life. And there are certain things I feel I need to do and lots I don’t. It’s an interesting process.

Met up with my health service manager friends yesterday and ended up at the end with two of them – one, the girl I wanted to work for, who is lefty trendy live for the moment, and the other, who is career driven and proud of it. It was like seeing myself split, and there I was, in transition between the two of them, moving from one to the other.

I was intensely grateful to see my two halves outlined in this way, looking at them both, turning the ideas of them both over in my hands, seeing the benefits of both, and then realizing my strongest draw was to the lefty trendy creative side, that it always has been and that it is a relief to have the divine push to go there. I am pretty dim. All of my life I have worked so hard at things that don’t come naturally to me, and discounted the things that do. Finally my body just had to up and quit to put me where I need to be.

March 3, 2009

Financial wrigglings, or how to squeeze a dime...

People often say that life happens the way it does to teach us lessons we need to know. I ended up married to an asthmatic because in nursing school I couldn't handle mucus. I still can't, but at least I know why now. And I know that any man who carries a handkerchief is NOT for me. Especially if they tuck it under your pillow when they sleep. Oog.
One lesson I've never learned, though, is budgeting. I've always loved a good bargain, but I've always overspent to a level that keeps my creditors happy and myself counting pennies for coffee.
So, now that I'm on disability and peering at living on half my income (after just switching to living on 1/3 of my income after leaving husband (see above)), I am desperately trying to figure out how to dig myself out of my current bad financial situation. While keeping healthy and etc.
So I am seeking help, advice, coupons. I'm taking advantage of all those insurances that cover you if your income goes down, I am tearing up credit cards, cutting back on phone plans, returning my leased car, etc. It's madness, but oddly purging. I will still be in debt until I die, but maybe I will now have to get hold of it.
And maybe the pressure to work without working will lead me to do those writing projects I have been putting off...
It's a hard lesson. I'm not happy about how hard it is to detangle oneself from debt and causes of debt. I mean, living without electricity or heating isn't an option in these parts. I do need to shower. And I am bound by phone contracts and so forth that have a death grip on my wallet. But I am finding a relatively sympathetic hearing from people, who seem to want to help me out.
There is kindness in the world. Thank God.
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