Writing about multiple sclerosis for over a decade, advocating, campaigning, ‘ambassadoring’, insurance paperwork, doctor visits and experiencing MS symptoms just like you, it can sometimes feel like my life is all-MS, all-the-time. It’s not, but it can sometimes feel like that.
Living with MS – rather than suffering from it – is important, but sometimes I have to remind myself to live beyond my disease.
I once had been a research subject in a Quality of Life study for people living with MS. There were great questionnaires that we would fill out about how we saw our lives as we tried to live with the disease. I took copies of one of these survey sheets and gave them to the dozen or so men that were in my MS self-help group in Seattle (we called our group “Poker Night” so no one had to say they were going to a support group meeting).
When the meeting began, everyone was handed two copies of the same survey. They filled out one and I collected them (they had anonymous markings so I could make sure that the second batch matched the first). We then went around the room and everyone had 5 minutes to talk about themselves – where they were from, what they did, what they loved – without mentioning anything about multiple sclerosis.
We found out about aspects of the lives of the men we’d known, in many cases for years, but hadn’t heard of because it was, well, an MS support group. Everyone enjoyed the exercise and then I had them fill out the second form.
When I compiled the data, the quality of life score for each person raised by as much as 30%. Just one hour of not thinking about, talking about or hearing about the disease we know so well and these guys felt better about their life in general. And some of them felt nearly a full third more hopeful, happy, and encouraged about their future. One hour!
Sure, it was an unscientific study, but each and every one of the people involved answered the questions in a more positive manner. Even flawed in method, the underlying concept is sound. If we focus on something other than MS, we will feel better about our lives.
It can be difficult, sometimes, to focus outside of a disease that can affect so much of our brain, body, lives and loves. That’s one of the reasons I so love gardening as a hobby. I can do it in a way that I completely forget (or almost completely) that I have MS. It takes my mind away from the symptoms, from the difficulties, from the unknowns. I can just be in the garden with the plants.
It’s important to live in the life beyond MS from time to time so that we can be more than our disease. So our brains remember that there is life to be lived and that life can still be very good.
Wishing you and your family the best of health.