Another Door

I was diagnosed with primary progressive multiple sclerosis in 1997, after a year of being poked and prodded by neurologists trying to figure out why my feet were numb. Immediately following the session with the doctor where he showed me the MRI scans and told me there was no treatment, I went to my husband’s office and we cried together. 13 years later I’m in a wheelchair all day and in bed at night. Mind you I have a fabulous wheelchair, and a very comfortable bed.

For some reason years ago, my immune system decided to attack the myelin sheath on my nerves. I’ve read lots of theories about why this attack takes place. I changed my diet – gave up ice cream and milk – and anything else a human being might enjoy eating. I’ve had mercury fillings removed from my teeth. I’ve prayed and meditated and tried to stop thinking unpleasant things about other people. I continue losing feeling and control in my fingers and hands.

For five years after I was in the chair I drove a van equipped with hand controls. Even after I had to retire from full-time employment I was able to volunteer for efforts important to me. Then one day I pulled out of our parking garage and found myself unable to turn onto the street. After a little rest I returned to the parking place and never drove again. I couldn’t bear the thought of running into some poor innocent because I suddenly stopped being able to control my vehicle.

I comfort myself by thinking things like: at least I can still see (MS frequently blinds its victims), at least I can still talk (the progression of paralysis will eventually take my vocal chords and swallow capability), at least it’s not ALS (Amyotrophic Lateral Sclerosis takes people from healthy to paralyzed to dead in about five years). I am fortunate to have Tom who is always thinking about better ways or different ways to get things done.

Through the years Tom and I have had a good laugh at my foibles like bathroom accidents in unusual places. But even those eventualities lose their humor after awhile.

A friend of a friend recommended that I fly to Monterrey Mexico to receive a special infusion treatment using stem cells. Since it would have cost about $40,000 I paused to think about it. I'm glad I did because last month 60 minutes on CBS ran an exposé on the medical clinic doing stem cell treatments in Monterrey Mexico. I decided not to pursue that treatment option. I've had trouble getting Steve Croft's face out of my dreams, "and you spent how much on this cockamamie idea?"

On Wednesday I had an appointment to get my haircut. As the hour drew near I began to open the door, which has a powerful automatic closure device attached. Every time I pulled the door open a few inches it would slam closed again. I called my neighbor Hallie from down the hall to help. She wasn't home. I called my neighbor Chris, the police officer, to see if he was home and could help. I left a message since he wasn't home. Finally on the fourth try I got it open and got myself out. With some relief I locked the door and headed for the barbershop. Tom and I were both at the barbershop at the same time, when we got the call. Our lobby attendant called to alert us because the police had arrived and wanted to look in our apartment. We assured them I was fine. I rolled home as soon as possible and was glad to see the door had not been knocked down. Another day another adventure.