Sunday, October 26, 2008

Long Day's Journey Into MS or a Story of Pathological Denial

Some of you have read this already and I apologize for the repetition. It feels a little self indulgent (ok, majorly self indulgent), but what the heck, isn't that what a blog is for? :)

This is the story of how I discovered I had MS.

Bending my head forward one day to examine something closely, I had the sensation of warm water rushing down my chest, arms and legs, right down to my toes. It was so tangible, I looked up at ceiling in shock, prepared to see a cascade emerging from above.

But like a surreal scene in a horror movie, there was nothing. No crack, no hole, no leak, no water. I tentatively patted myself down, feeling for moisture. Nothing. I lowered my head again and it happened again, but now I felt shooting pain along with it, like heated wires. I recalled the feeling that had gone along with the sciatica I had in my last two pregnancies, so I assumed my middle-aged spine was springing a leak. A disc problem, the result of years of poor posture and, well, just years. Fascinating, I thought idly, how we are put together, that everything is so connected something in my neck can affect something in my toes. And with that burst of genius, I did not give it another thought. This amazing sensation was a new part of my existence, whether I lowered my head to write a check, to put on a tee-shirt or follow the hymnal at church. Uncomfortable, but surely benign. Because I did not get sick. Ever.

Years earlier, I had experienced several episodes of numbness in my legs, from the hips to the toes, for about four weeks each time. I was afraid to drive because I had trouble feeling the pedals. Utilizing tremendous common sense, not to mention regard for public safety, I drove anyway; I simply was afraid the whole time. Pinched nerve, I thought. I did mention it to my doctor when I went in for a rare visit. He agreed. I did not get sick. Ever.

Years before that, I had dealt with an eight week bout of vertigo. Treated with Antivert, nothing really helped until it finally, gradually, dissipated. Once over, I put the incident out of my mind. Like the intermittent numbness I had in my hands that I first noticed while visiting my family in Ireland. Like the muscle spasms that cause my hands to jerk dozens of times a day. Like routine bouts of dysphagia. Like the back spasms I have three or four times a year that are crippling in their intensity and last for days. When I allowed myself to think about it, I chalked my symptoms up to neuroses. I was dizzy because I was unhappy at my job. Ten days with my mother in Ireland and it was a perishing miracle that all I had was numb hands. Surely I couldn’t swallow because I was trying so hard to lose weight I was making myself crazy. The back pain was the somatization of stress. I could think of no rationalization for my hands twitching, therefore I ignored it.

My left hand, where it rested on the warm surface of my laptop, began to feel pins-and-needles numb in May of 2005. The numbness gradually spread up my arm. I thought, hmmm, carpel tunnel. But, as a nurse, I knew the wrong areas were affected. Maybe something from the heat of the laptop? Then my right hand started to go numb. Over the next few days, it spread up my right arm as well. I couldn’t feel textures. My handwriting was unrecognizable. I went to push my hair behind my ear and couldn’t feel either the hair or the ear. I ended up ineffectually slapping at the side of my head. This scared me enough to call the doctor, who ordered a spinal x-ray. Totally normal, as we had both expected. Because I…you know the rest.

That month I was offered a new position after three miserable years working at a job I hated. I passed the physical with flying colors. Although it had been hard to produce enough urine for the drug test. Again. Because another one of my problems, conveniently ignored, and certainly not discussed, was an inability to urinate at times, despite having a full bladder. One night I had gotten up and, half asleep, shuffled to the bathroom. Where nothing happened. My eyes flew open as I completely woke up with a start and thought, “Oh my God, I AM SO FAT I HAVE BROKEN MY BLADDER!!” (I am obsessed with fatness.) But I did nothing, told no one, thought of it no more. Each time, I put it out of my head. Sort of. For a growing anxiety and fear was creeping ever so slowly into my consciousness.

I started my new job as a Director the first week of July. I was happy and proud of myself. And I was slowly dying.

My hands were so lacking in sensation that I had cramps from gripping the steering wheel driving to and from work. I had to pick a pen up with one hand and place it into the other in order to write a confounding scrawl. My feet started to get numb, then my legs, then my groin.

My girls and I went out to Lancaster to get a new puppy the first week in August. We rambled up and down through the lush farm fields of Pennsylvania. We ate breakfast at a stuff-yourself-all-you-want Pennsylvania Dutch restaurant, giggling non-stop because we couldn’t stuff ourselves nearly as much as we wanted and because we were the only ones in the place under 80. We drove by an Amish family in a horse drawn buggy, whose little boys waved sweetly and enthusiastically at us as we passed them. And then we brought home our adorable Isabella. But that lovely day was shadowed by the fact that I knew there was something terribly wrong with me. I knew it, but couldn’t process it. A pinched nerve, a pinched nerve, I whispered to myself. You are really sick, something whispered back. I shut that out.

Next: I get worse.


Anonymous said...

I'm having trouble expressing my reaction to your story Marie. I am so sorry you have been handed this debilitating illness. I'm going to run over to your shout box to finish this up. ~ tricia

Marie said...

You are so sweet Tricia. I really don't want people to feel sorry for me. Well, ok, maybe a little lol.

Part of the reason I am posting my story is to help people understand what it is like to devlop something like this when you've been healthy your whole life.

For people who do have health problems, I hope they can see they are not alone.

But mostly I hope people see we all have something. We all have something shitty we have to deal with at sometime or another. And it really helps to empathize with each other, to support each other, to nourish each other. Whether through art or words or laughter. That is what I find is so awesome about the internet.

Marie said...

P.S. Another thing about telling my story is that is has been very therapeutic. It was two years before I could even bring myself to say MS, nevermind acknowledge I had it.