Little MS Big Shot

Wednesday, June 23, 2010

Inflated air

Fortunately my pride doesn't get wounded as easily as my body.

To deal with the pain in my foot, I've been wearing my winter boots. It's been in the 80s and 90s this week. And I've been wearing my winter boots.

Today I started to think that maybe I was being a bit ridiculous. I mean, sure, if anything touches my foot I feel like someone has touched a raw nerve and there's an explosion of pain. That makes walking in my regular shoes excruciating -- who knew how much I curl my toes with every step while wearing shoes? And I can't be barefoot outside. But my winter boots were a perfect solution -- they're big enough on the inside that my feet don't actually touch anything. They're secure enough on my feet that I don't curl my toes at all. And they're wicked adorable because they're a pretty purple. Sure, they don't match the Bermuda shorts I was wearing today ... but who wears Bermuda shorts anymore anyhow?

But while the winter boots were a great solution, I was doubting their necessity. "This is all in your head anyhow," I said. And I meant psychologically, not in the form of actual lesions on my brain.

Sure that I was imagining myself into this curious situation, and not really putting much thought into what I was doing, I kicked an errant balloon the kids had left in the middle of the floor.

Flashes of black and then white. A lightning-like explosion. And before the scream could even escape my lips I had crumpled to the floor beside the less-injured-than-I balloon.

I really hope it snows tomorrow.

Friday, June 18, 2010

Pain

I should never have told him over the phone. And certainly not when he was rushing back to work.

"Oh, honey? By the way ... and I don't want you to worry about this at all because it's no big deal ... but I thought I should probably tell you since it's been a few days now ... anyhow, my point is ... it's back. I'm having symptoms again. It's really no big deal, but I don't think I should drive anymore. And I'm in a lot of pain. But we can talk about all of this later."

I can only imagine his anxiety for the rest of the day. What a terrible way to spring it. What an awful way to reveal.

"It's back." Such an inaccurate statement. It's not like MS ever goes away. He knows that. I know it, too. But he summed it up just right when he was able to sputter out a few sentences in reply.

"I guess I thought we'd beat it. I thought we were through with it. I thought ... I thought it didn't really apply anymore."

I did, too. I mean, there were always the annoying symptoms present. There was the perma-numb hands, the constant itch in my scalp. The blurry vision from time to time and the spin-spin-spinning dizziness. All of those were frequent visitors, if not permanent boarders. But none of them were scary anymore. None of them were new or unknown. And none of them were painful.

Pain. The scariest reality in my orbiting world. I don't fear what comes after death. I don't even fear the idea of death. But I am terrified it will hurt. My only impetus for living forever is to avoid the pain of transitioning from life to death.

This isn't death. It's life. And currently it's physically and constantly painful.

Until it isn't. Maybe the pain will go away. Or maybe I'll grow accustomed to it and it will become the next item on the list of annoyances, of daily deal-withs. Maybe once it's no longer new and unknown it will cease to be deemed painful.

Or maybe pain never stops hurting.

Friday, January 29, 2010

Escaping light

I wrote this five years ago (to the day) for a creative non-fiction writing class. Funny to stumble onto it now ...

All I wanted to do was turn off the light.

There were no windows in Examination Room 2, but I was sure with the door open we would have enough light in the small enclosure to get by. As it was, the fluorescent rays showering down on us were almost blindingly white, too honest and revealing. I saw every wrinkle in his brow; I saw the complete lack of creases about his lips. There was no smile. This man never smiled. But the light I so desperately wanted to shut off made it all too obvious that today’s fixed expression was more stern than usual.

More than I needed reprieve from the brightness, I needed the light fixture to be quiet. Its humming, incessant burbling – it was deafening. “Have you no respect for the living?” I wanted to scream. “Have you no sense? This moment – I’ve waited for this moment for five months. Can’t I at least have my silence during this moment?”

The light remained on, and I remained disgusted with its brilliance and precision. I felt cheated of my concentration, robbed of the opportunity to hear the news and feel its full impact all at once. Deprived of the chance to die and resurrect and die again as Dr. Garland delivered first the diagnosis, then his cheery hypothesis, and finally the gloomy prognosis. I had MS. My immune system, for no reason whatsoever, had decided to make an enemy of the myelin in my brain and spinal cord. Dr. Garland began explaining in greater detail what the debilitating disease is and how, after five months, he was finally able to determine the culprit. But I couldn’t hear him. The humming from above was too loud.

The humming changed to a buzz, and from a buzz to a chant. The natives were getting closer. They were surrounding me, coming from every direction. Chanting, chanting. I couldn’t understand their words, but they were menacing, threatening. Snarling.

I coughed. Then I looked around. It was as though the chanting of the light told me to. Look, look, it said. Look at what I’m showing you.

I looked, and I was more aware than I had been. Not sad. Not scared. Not angry or confused. Just distracted by the humming. Just aware.

Aware. Aware of my chair. Never had a piece of furniture been built with such little regard to comfort. The brown, scratchy back was too straight; it refused to give even a millimeter for the sake of relaxed posture. And the bottom, though thickly padded and supposedly softened by years of exposure to patients just like me, felt as though it had been constructed of rock slabs. I wanted to sink, sink, sink and fall into oblivion, but the rock slabs forced me to remain erect, as though a false god or shrine to the virtue of dignity. “See this woman oppressed, yet look how she carries herself. She holds her head high.” I meant to show no strength. I felt no strength. I just felt the chair pushing, crushing my tailbone and wondered how I had sat in this abomination of a chair for so long without realizing its cruelness.

Aware. Aware of the whiteness of the four walls surrounding me. Again, if I could just turn off the light, that damned light. The walls were smooth, with no wallpaper, no border, no hint at an artistic brush stroke from its impeccable painter. Just meticulous and white, methodically made so and methodically maintained. It exuded sterility, perhaps meant to give comfort to individuals entering into the enclosure looking for cleanliness to correct their imperfections and impairments. I received no comfort from the surrounding walls. They were flawless but also loveless, they were uncaring and uncompassionate, unmoved by the news that my body was not, as they were, in perfect order.

Aware. Aware of my mother, sitting beside me in her set of rock slabs. She, too, was sitting erect, though her posture was that of high-alert, not discomfort. As I was studying the room about me, she was studying me, watching for signs of emotion, for cracks and holes in my facade of composure. She was searching for my reaction so she could formulate her own. I looked at the light switch, no more longingly but now desperately, pleading with God Above to somehow cut its source since I, myself, couldn’t rise from my rock slabs and flick the single switch.

But the light continued to rain down, exposing the sterile, stoic room. The perfectly lined cotton swabs in the clear, glass cylinder on the countertop, the three pamphlets on migraine prevention evenly spaced beside it, the sink without a water spot as though hard water never danced in its shiny silver exterior. All of it seemed so wrong, so out of place.

Wrong because it wasn’t spinning. Shouldn’t it be spinning? The entire planet was on its incredible trek around the sun, spinning and whirling on its own axis as it hurtled in its elliptical orbit. How could the world be making such a journey without impacting a single item in this sterile, stoic room? This unyielding, uncaring, unmoved room. The world would spin and spin, but nothing ever deviated in this room.

Dr. Garland continued his counsels. What to do. What not to do. What to think. What not to think. My ears accepted them all, and somewhere in my brain it was registered, catalogued and stored. I was nodding, asking questions. I was responding. But my words were drowned out by the humming. My brave front was exposed by the harsh lights.

The appointment ended. Another was scheduled for the following week. Decisions would have to be made, a course established and followed. But for today, we were finished. Other appointments would be on other days in other rooms. That moment was my last in Examination Room 2. I stood, grateful to peel away from the rock slab. Normally satisfied to follow others out of a room, I led the way. He opened the door and I escaped, leaving the light on and its honesty behind.

Saturday, March 22, 2008

Easter Dinner

Today I couldn't pass the potatoes at my husband's family dinner.

No big deal, right? They're potatoes. It was a new recipe that no one really loved anyhow, so it's not like anyone was clamoring for potatoes and I couldn't deliver fast enough. I don't think anyone even noticed that I was struggling. But there they were, a pot of potatoes sitting in front of me, and I couldn't pass them.

It's a funny thing, having worthless hands. I should be grateful I have hands at all. I certainly should be grateful that I have a husband who knows about my difficulty and passes the potatoes for me. But in my rotten moment of self-pity, I feel as though no hands would be better than unreliable hands.

If I had no hands, no one would ever ask me to pass the potatoes -- they'd just know they have to grab the potatoes themselves or just do without. If I had no hands, my boss wouldn't ask me to separate papers when they were too sticky for him to pull apart. If I had no hands, I would never have to pretend I have to run to the bathroom just to get someone else to change my little girl's diaper for me.

Why can't MS be a little more obvious? Why can't it make its presence a little better known? See what I'm talking about with the rotten self-pity? But if I'm going to be disabled, why can't it at least be clear. Why can't it at least be permanent. Tell me something like I'll never walk again, and that's fine. I'll cope with that. Tell me that I could lose the ability to walk at any time, but that it could come back at any time ... maybe. You know what that does for me? That robs me entirely of the ability to cope with the situation -- to experience closure.

Those were my thoughts driving home from that family dinner. Self-pity always turns into self-loathing. I didn't do myself any favors indulging.

And then, gratefully, I had a change of heart -- or at least perspective. Here it is, Easter dinner, and I'm ready to throw myself off a bridge (not literally) over the inability to pass a pot of lousy potatoes. What is the point of lousy Easter dinner, I thought. Hmm, to celebrate the resurrection of the Savior. He lived His perfect life for me, suffered in Gethsamane for me, died on the cross for me, and then rose three days later for me. And that's why we get together once a year and eat ham and those blasted potatoes.

My hands are completely worthless right now. I'm sure they'll regain some purpose soon -- I have yet to experience complete and permanent disability thanks to this disease (or any other for that matter). But whether they start working again in a week or a month or a year, and whether my legs go out on me next, or my eyes, or even my mind, none of it will be forever. That first Easter guarantees it. Some day I'll be whole.

In the meantime, I guess I'll just have to seat myself as far away from the potatoes as possible.

Tuesday, March 18, 2008

Goodbye hair

I can't wash the shampoo out of my hair.

It's a small thing. It's happened before. But the longer it lasts, the more it builds up -- it being the shampoo, of course, but also the frustration and the embarrassment. I'm a grown woman. I should have basic hygiene down. But my hands just aren't working very well. If I can see what I'm doing, I'm OK for the most part. And most other things I can fake well enough so far. But I have a grease spot and several centimeters of nasty dried shampoo caked on my scalp to prove that I'm failing and faltering.

Maybe it's time I cut my hair.

Thursday, February 21, 2008

What's the point?

Honestly, I can't say I have one. A point, that is, for this blog. I don't have anything special or amazing to say, nor do I have an audience to say it to.

I was diagnozed with multiple sclerosis in 2004. Since then the most dramatic events in my life haven't had anything to do with MS. I graduated from college. I got married. I had a baby. None of those were because of, or even inspite of, my multiple sclerosis. So far MS hasn't even been a supporting actor in my life. It would barely make the credits.

But there's always that phrase -- "so far." There's always the possiblity that MS will make itself known, and in a big way, in the future. I'm not after a second college degree, and I'm plenty happy with the first husband. But what about the second pregnancy? What about life in my 30s and beyond? I'm only 27, so I have a whole lot of time left for MS to make a mess.

That's not the point. There is no point. I just figure that if I'm going to have a life-altering disease (with or without the altering part), I might as well use it as my muse.