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Wednesday, April 4, 2012

The Roots of Multiple Sclerosis for Me


When I was going through some of the worst symptoms of Multiple sclerosis (MS), such as migraines, depression and panic attacks, I found that if I sat down and wrote a poem about it, I could often write my way out of how bad I felt. It was as if by naming the pain, and describing it, I could take away its power to cause me harm.

The other day, I was sorting through poetry I’ve written, and seeing the path of MS through it for years. In the past, I thought it was the path of Lyme or of environmental allergies. It still is those, but perhaps MS is the overarching concept that ties it all together. Reading some more research today, I learned one more tidbit about the Epstein-Barr Virus (EBV) that I found interesting. You probably know that it’s a major precursor to MS. Many people with MS carry signs that they’ve had EBV. The more well-known name for EBV is mono as in mononucleosis. My brother had mono in high school, but the rest of us didn’t. So, when I read about EBV and Lyme being variables that were common in MSers, I figured Lyme was my ‘entry’ disease. However, it turns out that only about a third of people exposed to EBV develop mono. Chances are, since my brother had it, and we lived in the same home, I was exposed to EBV, too, and carry it in my blood. So, I have two of the most common precursors to MS. Peachy!

Does that mean anything in particular? It doesn’t change that I have MS and have to deal with it, but it might open up other treatments that might help. If something comes out that lets one rid oneself of the markers for EBV or Lyme, then I will pursue both.

One question that comes up is when was I exposed to each of these. My older brother, Dave, was in high school when he had mono, and he is two years older than I am, so I was a teenager. I think Lyme happened at a much younger age, My family spent a lot of time hiking and camping, and playing in the woods. We didn’t worry about bug bites in those days. If you itched, you scratched. You tried not to scratch, so it would heal faster. That’s all I remember. At three years old, I had a bad reaction to some antibiotics I was on. I had a blood disease called thrombocytopenic purpura. I had a vitamin K shortage and my blood wasn’t clotting. It was easily remedied, but even so, I went for blood tests for it until I was 18 years old. I don’t know what my health was like before that, but I do know from old report cards that I missed 30 days of school some years in elementary school. Looking back, I would guess I got my tick bite before then, and that my sensitivity to antibiotics, foods, and other things started then.

One of the common denominators of Lyme, MS, and allergies is depression. I’ve had my fair share. It makes me feel as if I cannot breathe. Depression scares me so much, I want to run away from it, as fast as I can go. Here’s a poem written during one bout:

Where is Hope?

She woke to dreary blue, muddy green swirled in burnt sienna,
depression like ballast pinning her mind to the mattress.
The dark corners of her life offer hope no quarter,
she can barely see into them now.
They trap sadness in so many vials;
the dim light glints off old green mason jars
covered in dirt and spider silk.

Sneaking back into the cosmos of dreams;
she thinks, if the clock turns forward one more hour
daylight will illuminate these bleak recessed corners.
This mournful desolation will be pushed back
behind the latched cupboard door.
But in her dream she sinks in black quicksand,
death’s dark veil closes over her.
She starts from sleep.

Fear pounds at her psyche’s portal.
Panic chases her, runs her from her bed.
To lure her submerged mind from opaque shadows,
she turns on every single light,
catches her breath, slows her pulsing heart,
wills herself not to dwell in the nightmare.
She dodges the toll of despondency 
     until hope finds its way back.

© Kit Minden


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