As you may know, my beloved Bookman was diagnosed with Multiple Sclerosis in 2005. I’ve been posting about MS Awareness week since 2006. This year I have been hemming and hawing and almost hawed myself out of posting about it not because things have been bad, far from it, but because of fatigue.
Nine years with MS and Bookman is doing really well. He has no new symptoms and things go on in a not-getting-worse kind of way. There are good days and bad days, but having settled into a sort of normalcy of living with a chronic illness one gets used to it but also tired of it. Tired of thinking about it, tired of talking about it, tired of hearing about it, tired of cheerleading and fundraisers and awareness weeks. And certainly one gets tired of living with it.
And that’s why I finally decided to post for Awareness Week. Because while Bookman isn’t getting worse, he also is not getting better. There is still no cure. Scientists still don’t know what causes MS. There have been some interesting discoveries over the past year that might eventually lead to treatment therapies that could, if not cure the disease, at least repair some of the neurological damage and keep it from getting worse. The time it takes for these things to develop means it could be years or a decade or more and for people who have an unpredictable chronic disease that is a really long time. My being tired of all of it is nothing compared to how Bookman and millions of others who actually have MS feel.
Bookman has benefited from one development over the past year. Prior to spring of 2013 there were no oral MS medications and Bookman had to give himself a daily injection. Now there are not one, but two oral medications. Bookman started taking one of them in May and so far so good. No major side effects and since he hasn’t had any relapses we assume the medication is working as well as his injectable medication did but it will be awhile before we know for sure. It was a bit disconcerting when he first started the oral medication to hear is neurologist say, “well we’ll know in a few years whether or not it works.” We’ll know it is working if he doesn’t have a relapse and he has a couple MRIs that come back showing no new myelin damage. In the meantime my skinny husband is grateful he no longer needs my help to squeeze up some imaginary fat on the back of his arms for an injection. And we both happily watch the years of injection site scars slowly fade from his arms, hips, legs and stomach.
We remain grateful for health insurance and his good general health. But not a day goes by that we don’t both look at our framed broadside of Jane Kenyon’s poem and know that one day it might be otherwise.