Coping with Using a Mobility Device the MS Stigma

When my partner’s dad started feeling that his days were numbered he began investigating retirement/assisted living homes. He called one day very excited with the news that he and the Mrs. Had found where they would move soon. Well known in Seattle, the Ida Culver House and we were happy for them. We too knew it was time.

A few days later he called to say it was off. The Mrs. Just couldn’t live among so many old people. (They were in their 80’s) Within a month he had a stroke and neither were allowed to move back to the apt. they had grown to love. Now the oldest sister was scrambling to find a home for them.

On our first visit to them in their new home Mr. greeted our disability service van; he was standing out front and looked better than he had in years. The place was very nice. The Mrs. Hated it. “All the people in wheelchairs,” she would say with disgust. (Yes, right in front of a woman with MS who had been using such a mobility device for years.)

They escaped back to their apt., Mr, used a walker (Mrs. Would tell us he didn’t really need it) and as he and she continued losing weight eventually he fell and she just left him on floor through the night, later saying, “He just gave up and didn’t want to get up.” (AARRGGHH) He would die with a few months.

Then Mrs. Had to be placed in a home since she was not cooking for herself and the oldest sibling was certain she had Alzheimer’s. Several different facilities were tried, the Mrs. Hating them all. (So many old people in wheelchairs and using canes/walkers.)

Flash backward to when I was using a cane. People I passed always had words of encouragement and “atta gal!” which I never understood. I’d made friends with a woman in her 80’s who ran 5 or more miles a day and she wanted me to run with her. She believed if I just put my mind to it I could do it. I used to be a runner and wanted to so much that I even asked my Dr. if he thought I could go for it. “I think you should try something you will succeed at and I think you will fall and hurt yourself.” (Was that comment because he saw that I could barely wall-walk 30 feet?)

Ruth and I had coffee and talked every weekend morning for years and the day I appeared in my scooter, well, I knew it was not going to be received well. Ruth kept on me about joining her mile runs and she gossiped/trashed on any senior she saw with a cane or walker. One woman she said “just needs some primal therapy,” had a deformed foot and moved an inch at a time, grimacing with each step; she must have been in her 80’s and low-income. One day I stopped in my scooter to greet her and she asked how scooters work. Thus began my educating her about getting an electric mobility device, which Medicaid got for her. It opened up her world and replaced her constant grimace with a smile. Meanwhile, Ruth’s distaste for both of we-the electric-mobiled ones of weak minds-grew.

After many months I couldn’t take it anymore. Ruth was assaulting my self esteem. It was difficult enough making the moves from cane to walker to scooter to power chair---without a friend’s weekly put-downs. I had to stop having coffee with Ruth. She is gone now after drinking too much (an ongoing battle of hers) and falling, moving to a nursing home and her spirit of a free lioness died there.

When I was first diagnosed with MS many brochures would arrive and I was often invited to support groups. I was afraid to go and see people in wheel chairs. I was afraid to see my future in the flesh. Now, I am afraid to go and be the scary future newly diagnosed people will see. Ironic? LOL

Talking about my problems has never been my thing. Even blogging about my problems is uncomfortable. Why dump my burdens on others who already have their own? My back can still take it and I reach out when needed. But, isn’t it funny how we judge other’s “strength of mind and willpower” by devices that will help them continue to lead a full life?

Sorry, Ruth, sorry you never appreciated the strength it took for Maxine and I to use a mobility machine. I never judged you for being, in your words, a drunk. Ironic. This must be a generational thing because young people never seem to have a problem with me in my power chair, but my new senior neighbors do. I see it in their eyes. One went on and on about why she had to use a cane “for now.” (She is in her 90s and recently broke her spine!)
They see me as a whipper snapper spring chicken who is plain lazy.

Oh well, been there; done that---better get used to it.