I am not my disease

I am not ms.  I have been ms but I am not now, nor have I been ms in a long time.  When I was first diagnosed I instantly morphed  from being a woman, wife and mother to woman, wife and mother with MS.  I didn't like it.  I felt ashamed of having a disease as if it was something dirty, something that marked me as less than a whole person. I dreaded telling people, especially people in my church.  I felt cursed and abandoned by God. I felt that I had slipped lower on His list for some reason, as if God keeps a good and bad list like Santa Claus.
I felt very sorry for me.  I was dizzy every time I stood up.  Pains in my face came in waves that made my eyes tear.  My eyes crossed on their own any time they felt like it.  My arms were too weak to hold a hairdryer to fix my hair in the morning.  I was so exhausted I felt like I wore a lead suit all day.  Then I went to bed, woke up the next morning and felt just as bad.  Well-meaning folks sent me literature from the MS society that included information about wheelchairs, braces and techniques for sexual relations when normal relations were not possible.  I had a 9 year old and a 2 year old baby and didn't know if I was going to be able to take care of them.  I had visions of wearing diapers myself.  There were no medications available - not much hope the neurologist could offer.  I was 33 years old looking down a long, hopeless road of illness.  It sucked to be me in 1986.


  1. In 1986, I was pregnant with my first child and had optic neuritis. I wasn't diagnosed then, but knew what it was. I had the same fear about not being able to care for my child. I appreciate your honesty.


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