Community

Years ago, when I did " social work" type employment, all the programs and conferences I went to  were based on an idea expressed by First Lady Hillary Clinton," It takes a village to raise a child."

Life experiences have made me realize that a rewrite of Ms. Clinton's catchphrase applies to me these days. I would change her quotation to "It takes a community to provide quality of life to a differently abled person."

I used to think my life partner and caregiver Janet could meet all my needs, (beyond the services provided by the home health aide). After all, Janet is the MS Society’s Caregiver of the Year! But then something happened that made me realize how wrong I was.

It was Friday morning a week or so ago and my home health aide was not coming until about 1:30 PM. This was her last day for a while because she was 8 1/2 months pregnant and honestly, I was afraid to have her do anything. Anyway, Janet called me at about 10 AM and woke me from a sound sleep, causing me to have an extremely strong spasm. When I got off the phone with her, I realized the spasms were continuing and I was slowly but surely sliding out of the hospital bed. When I understood that I was in trouble, I managed to call back Janet and let her know that this was a 911 situation that I had no control over. The pillow we used to protect me from knocking into the hard metal rails of the hospital bed when I spasmed, was actually acting on one side as a ramp, causing my back to go right over the rail.

As I started to dangle over the edge, I dropped the phone but I could hear Janet's frantic messages on the answering machine to let me know she was coming and that she had reached a neighborhood friend who was on the way. By the time our friend Susan had gotten here, I was half out of the bed, trying to hold myself up with my right arm, which is not as strong as it used to be. In other words, I was almost on the floor. Anyway, Susan arrived in time to save the day and get me back in the bed. Janet arrived shortly thereafter.

 This close call us me to think about where I would be without my community. There are so many silly things… My friend who cuts my hair for example because I can't get into the chair at the salon. A large number of my community participated in the MS Walkathon, and supported me all the way through. Shortly after I was diagnosed with MS, a friend and her two dogs gave me weekly physical therapy sessions. When Janet needed a break as a caregiver, our friends volunteered to take care of me in shifts for four days so she could get away. Then there are the people who just come over to hang out for a while and make me smile And that's just the tip of the iceberg. I could go on for hours thanking people who have helped out in one way or another, and I still would miss a few.

 I am proud to say I am a community project. Without everyone's help, I'm not sure where I would be right now. I'm not feeling sorry for myself, I'm feeling thankful to all of you.