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Celebrating disAbility Culture!

Personal Stories


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Karen's Story

KAREN I want to attempt to document the challenges that Multiple Sclerosis has presented to me in my daily life. I was diagnosed in December of 1991 with what was then called exacerbating-remitting MS. Since that time, my life has undergone many changes.
Well, I guess I should begin by telling you what I was like before I was diagnosed with MS -- although I am no longer that person. She is my past and I am grateful to have been her, don't get me wrong -- but she bears little resemblance to who I have become.

The OLD Karen:
  • -was in gifted classes all throughout school and majored in advanced math and then Russian language
  • -could lift people up to 180 pounds and carry them across a room (was a caregiver for awhile -- how ironic!)
  • -had stamina to work from 5AM until 9 or 10PM every day - often without days off
  • -enjoyed shopping, traveling, walking, bicycle riding, reading, movies, etc.

The NEW Karen:
  • -has trouble doing simple math or following instructions with more than 2 steps
  • -does not have strength to open a can of soda by herself
  • -has to rest in between normal daily activities -- i.e. shower then rest then get dressed
  • -enjoys the same television programs over and over (because I do not remember watching them the first time!)

And now, I will try to reconstruct how I got from OLD Karen to the NEW (but not improved!) Karen. Would you believe it all started with an over-flowing toilet?!? Come with me back to the fall of 1991...

I was in an abusive relationship that I was trying to get out of gracefully, so when the first symptoms showed up, I just assumed they were the result of stress. I would have bouts of dizziness, weakness, exhaustion and occasional slurred speech. With everything else that was going on in my life, those were minor annoyances.

I didn't realize that something was seriously wrong with me until a night in November when the toilet overflowed. I tried to mop up the mess and could only do a few strokes with the mop before I had to sit down. I was terribly dizzy and wiped out by just that little physical activity. I was alone in the house at the time and I was afraid. When my roommate did get home, we went straight to the hospital.

Naturally, the interns at the hospital had absolutely no idea what could be wrong with me. They suggested I see my regular physician. I hadn't seen him in over 15 years, probably, but I made the appointment the next day. He ran some tests and did not know what was wrong either. He sent me to a neurologist.

Well, the neurologist did those charming little in-office tests -- and yes, I did know who was the President at that time! He wanted me to have an MRI but said that it seemed like one of 3 things --a tumor on my brain stem, a series of little strokes or Multiple Sclerosis. Out of those three choices, I was hoping for MS!

The MRI results came back showing several lesions that the radiologist diagnosed to mean MS. And so my odyssey with Multiple Sclerosis officially began...

Karen © 1998.

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