What’s on your MS bucket list?

One of the things my occupational therapist uses to strengthen and improve the coordination of my hands is a type of moldable therapeutic plasticine. I call it “serious” putty, as there is nothing silly about it, and the way we “play” with it isn’t particularly fun.

She has me use it in various ways, but one of her favorites appears to be having me find and uncover increasingly smaller objects hidden within it. I doubt that at any point in my life I would’ve been able to say exactly what I’d be doing at this age, but I definitely wouldn’t have guessed I’d be playing hide-and-seek with wooden beads and Play-Doh. I suppose fate really meddled in my best-laid schemes.

Then again, I never really had any schemes, and I don’t think I actually believe in fate, so I doubt I could say that it meddled in my plans at all. I can say for sure that multiple sclerosis (MS) did, though.

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I never used to be one to make a bucket list, for the same reason I never really made New Year’s resolutions. I never had a list of things to accomplish before I got too old or too “unalive,” but even if I had, I think MS would’ve changed it all anyway. It’s a bit ironic that I didn’t have a list before my diagnosis over a decade ago, but I have one now. Since this disease makes it hard to plan even 20 minutes from now, much less 20 years, making a list might seem illogical and even impossible, but I do actually have an MS bucket list.

In my lifetime, I’d like to see a cure for MS. I remain skeptical that even if one were found tomorrow, it would help me very much. But in that case, it wouldn’t really be for me anyway. I know the statistics, and I know I haven’t increased my children’s odds of having this ailment much, but I would like for them to never have to worry about getting MS.

I don’t mean for that to come across as self-centered. The same thing goes for every man, woman, and child on the planet. I think we can all agree that the world would be a better place without MS.

I’d also like to see improved and more effective treatments for MS before I shuffle off this mortal coil. Some new treatments have been developed since my diagnosis, so I think this is an item that likely will happen.

And while it might not be certain to happen, a therapy that repairs the damage caused by MS lesions is another thing I optimistically have on my list. Stopping the disease process would be quite an accomplishment, but reversing it, even by a little, would be nothing short of miraculous.

While I patiently await these things, I’d also like to see improvements in assistive devices for people who are disabled by the disease. The perfect ones would have to be made with the input of the users, though. Using myself as an example, I’m not an amputee, nor am I paraplegic or quadriplegic. But I must adapt tools and other devices that are made for people with other disabilities to my own needs. Necessity may be the mother of invention, but disability is its cruel stepmother. Considering the pace of technological and mechanical advances, I feel really good about having this item on my MS bucket list.

The last thing on my list is a vital part of all the others. Anything I’d like to see happen with MS in my lifetime has raising awareness at its core. I’ve written previously about how my concept of that phrase has changed over time. It doesn’t entail merely knowing what the words “multiple sclerosis” mean or simply having an idea of what the disease is. It’s knowing how much MS affects patients and the people closest to them. A better understanding of that is certain to prompt the type of innovation that will allow me to cross items off my MS bucket list.

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