SUNRISE LESSON #3.2
|SUNRISE LESSON 3.2
I will attempt to describe my MS experience, as trying to imagine being blind or deaf right now is just not a possibility.. Because it has been literally 25 years, and I have lost all of my journals, we are all at the mercy of my memory! Like a revisionist historian, I will be able to tell you the story from the eyes and perspective of today, knowing what I know now. . . .I will choose a few tidbits from my memories at random. . . it has gone on for so long that it is now just a funny waking bad dream!
I began in earnest to have bizarre symptoms during 1984, my last year of law school--random numbness, dizziness, trouble seeing, trouble talking clearly (a horror because I do not drink, though my parents were alcoholics), trouble walking straight, double vision when I could see, and a little unpleasant digestive trouble..
It was all terribly, frighteningly unpleasant, and; having trouble with unplanned bathroom functions was over the freak-out limit, as I was about 24 at the time, and fairly dignified!! Stuck-up B. would fit nicely, thank-you. I think I must know the location of every public bathroom in every location I frequented--that includes Memphis, Litte Rock, east Texas, east Tennessee--you name it, I had the mid-South covered!.
The part of all this that gave me the most fits was strange: it was disclosure, not symptoms! It was having anyone find out what was wrong--even my parents. They lived in Litlle Rock at the time; I would barely tell any of my own friends back in Little Rock because I just couldn't afford for it to get back to my parents; they were already in their 60's, and in ;poor health. My parents are gone now; I wish I could have shared this with my dad,but knew he would have felt compelled to share it with my mom, who was bi-polar and out of control.
After my mom died in 1990, I talked with her next-door neighbor, and she asked me about the MS! I was aghast and asked her how and when she had found out. She admitted that she had found out long ago from her best friend, who happened to be my high school boyfriend's mother, with whom I was still close! Small southern towns. Litte Rock was one, back then.
My main fear in all of this is that I would be judged as inferior, defective, undesirable,, and pitied. Retarded is not an appropriate label anymore, and that one never hit my lips,but it was clearly there in my mind.
The basic disease itself has been a trip. There is nothing consistent about it; there is not one set of symptoms for all MS cases. My favorite description is that it's like waking up each morning with a different used body, different from the one I had been awarded the previous day. I can remember the frighening experience of having to walk up the steps to my first job as a lawyer, and describing the sensation as walking at a "revolving tilt." That was from the dizziness and weakness--an icky combination of symptoms.
I have been VERY lucky. My symptoms have been mild and painless. i dom't count falling down as either mild or painless--in the course of my 25-year adventure, I have broken my hip, pelvis, nose, elbow twice (the last time, it even grew back as two!!). back (from falling over at the eye doctor's office), rib (from walking our dog), and I'm not sure what else!! I think that's enough!
It has been an adventure, one I wouldn't sign up for again (I'm not positive that I ever officially signed up in the first place), but also not too awful, either. My wonderful husband married me AFTER I was diagnosed, and is an incredible person. I began to date him at the beginning of our sophomore year in college in 1978; we married in 1988. I was diagnosed finallly in 1987. . .a long saga of love!!
BUT, I still say that I have become a better person from all of this!
I know that I am lucky--as old as my MS is, I should be an immobile, blithering idiot by now, or maybe even dead. But instead, thankfully, I am just a realitively healthy, non-symptomatic person in a chair with a diagnosis of MS. Because of the size of the house in my new surroudings, I can only be in two places: the kitchen, at the kitchen table (directly in front of the droning TV, usually with the whole family present) or in our bedroom (usually off limits because there is no one who can help me catch my 5 wayward cats). (My sixth cat is exiled to the kitchen because she is so cute and interactive, I guess.) So, anyway, I am here in the kitchen either writing, cooking, eating, or talking to myself. Leaving the house is difficult; there is no good, safe way for me to exit or enter. So, I am pretty much stuck here full time, writing, cooking, eating and talking. . .to myself! But despite all of this, I am happy.