Small Reminders of a Big Disease
A while back I slipped one of those orange MS bands onto my wrist– you know the type, right? It seems every disease has its own colored silicone bracelet to wear as a visible reminder of their cause. I was heading off to Florida to speak at a conference, and put it on to make a statement. Returning to Ohio I was back in long sleeves and the orange band was quickly hidden by the long sleeves of my shirt. These bands are light weight and are unobtrusive – I barely notice I have it on. But every day as I dressed for work I received that visual jolt as I spotted that flash of orange on my wrist.
It’s not like I really need a reminder that I have MS – I have lots of other little things that remind me of that fact. These nudges can include the sudden urges to find the nearest restroom or staggering when I walk down the hall at work as if I had imbibed in that 3 martini lunch of the 1970’s. I also get those serious jolts to remind me I have a chronic disease when I open the mail that includes all the associated medical bills. But that orange band is much less obvious – it is just a quiet reminder that Multiple Sclerosis is my companion and a part of me, and taking the band off won’t free me from that fact.
Often times I can push aside thoughts of MS and live what I think of as a fairly normal life – work keeps me busy and there’s little time to think about other things and that helps block out the voice of MS playing in my head. Spending time with the family and friends is the same way most of the time - I lose sight of the MS as I get into visiting with our grandchildren or an evening of playing cards with longtime friends. Not thinking about my own MS allows me to feel almost normal.
It was casually mentioned to me a while back that a family member was concerned I spend too much time studying, writing and advocating for MS, and perhaps it would affect me in a detrimental way; their thinking was with all of my time spent focusing on MS maybe I would make myself emotionally and physically worse. Interestingly I find it is just the opposite – the reality is I have MS and nothing will change that, but by doing so much with it through research, writing my blog and advocacy work, my attention is focused in a positive way. Particularly when I am in the midst of major MS projects, I have little time to think about my own personal relationship with MS. It is too large of a problem to come down to being just about me.
Funny how I can do the big mental things associated with multiple sclerosis and not have it affect me. Instead, it’s during those quiet moments when I am doing ordinary things like drying off after a shower or pushing up my sleeves to wash my hands and I spot that simple orange bracelet and instantly make the connection and have the reality check that I have MS.
Wishing you well,
How well do people around you understand MS?