I have had MS for over 30 years though I was not diagnosed until 1984. This was before the years of MRIs and CT scans and the only way a patient was diagnosed was by eliminating everything else. I was hit with a series of unexplained high fevers when I was 26. Then they went away and nothing further occurred until I got a cold. I ended up with a limp which again went away until I became pregnant (for the 4th time) with our son. I lost the feeling in my feet and was sent to a neurologist.
Because I am small, 5’ 2” and about 100 lbs., the first doctor felt it was pregnancy related. When it began to get worse, I went to another neurologist and by now I had a fair idea that something serious was wrong. This second neurologist said it may be pregnancy related but he wasn’t sure. When I asked why he said he had seen the same thing in men. I knew this was his way of telling me something really was wrong but no doctor likes giving a diagnosis for an incurable disease to a young woman when she is pregnant and there is neither a cure or any treatment. Over the next three years I had another miscarriage and my symptoms grew worse. My limp became permanent and I never regained the feeling in my feet. I had seen a number of neurologists and finally went to a sports medicine doctor who was part of the San Francisco 49ers organization.
He asked me to bring all the tests results I had and all my xrays. As soon as he read the results of my lumbar punctures and saw the amount of proteins in my CNF and the look of my xrays he told me there was no doubt that I had MS. I was 33. As I was driving home all I could think of was thank God I didn’t have ALS and that there was nothing wrong with my child. When I got my family together, my husband nd I told them what was wrong. While everyone was devastated, we set about deciding how we would handle the situation. I decided to continue to work and not tell anyone until I could work no longer . I did tell my closet friends because I needed a large support system around me.
I must say, I was not overwhelmed by the diagnosis since I did have a successful marriage, a close family and a very large circle of life-long friends. In 1989 I had to stop working and, shortly thereafter, needed a hand-controlled vehicle. In order to continue feeling useful, I began volunteering; first as a hospice caregiver and then for a family services agency for the poor of our county. I found that as long as I kept busy doing important work, MS didn’t affect my life to any great extent. It wasn’t until I could no longer drive that I realized I was going to have to do something that didn’t require leaving home on my own. I installed a chair lift so I could get into my home. I then renovated my home so it was accessible for wheelchair access. My kitchen and bathroom allow me to work and shower from my chair. The rest of my home is wheelchair accessible and beautifully remodeled including carpets, furniture and my computer center. But the best was yet to come.
I started painting when an artist friend gave me her canvases, paints, brushes and everything else I would need to get started. My first efforts are attached. I received my first commission for $1,500 and my City Gallery is having a showing of my art next June or July. Overall, MS has changed my life significantly but has not made my life unhappy. I now have a talent I didn’t know I had. Staying home lets me do some of the things I do best; cooking, painting, counseling other MS patients, writing, etc. No one gets through life unscathed. MY cross to bear is MS but it would be so much worse. I have a happy, 35 year marriage, a wonderful son, and loving friends and family who surround me with love. I have been told I am inspirational because I live a full and happy life even with this insidious disease.
I don’t know if that is true but I do know that if you wake up in the morning, you have to do something with your day. Being disabled doesn’t mean you are unable to do extraordinary things. Many able-bodied people have incredible gifts that they never use or worse, abuse. Living from a wheelchair is as much living as it is standing. I have done both. Would I prefer not to have MS? Yes. But, the life I lead today is only possible because I have MS and, in the end, it may be the best thing to ever happen to me.