A step away from books and gardens and general mayhem to talk about multiple sclerosis today at the beginning of MS Awareness Week.
MS is a chronic disease in which a person’s immune system attacks the myelin (a protective sheath that surrounds nerve fibers sort of like insulation around electrical wiring) belonging to the nerves of the central nervous system (brain, spinal cord, optic nerve). When the myelin is damaged it forms scar tissue. When enough damage occurs, the nerves sort of short circuit and produce a variety of symptoms ranging from mild to severe, from numbness to paralysis or loss of vision. About 2.1 million people worldwide have the disease, though that is just an estimate since reporting to health organizations is not required. No one knows what causes the disease. It isn’t directly heritable though it is thought genetics do play some role. It is not caused by environment though there are environmental factors. It is not contagious, though there is a suspicion that a virus or bacteria might be at the root of it all. What we do know: there is no cure.
You may or may not know that my Bookman was diagnosed with MS eight years ago. Ever since then he wears glasses with a prism in one lens to correct the double vision that led to his diagnosis, takes pills to help alleviate various MS symptoms, and gives himself a daily injection of a medication that helps slow down the progression of the disease. This year we are very excited because for the first time there are oral medications available that work just as well as the injectable. Bookman will be talking with his neurologist later this week about which one to take and hopefully within the next month or two, the daily jab with a needle will be nothing but a memory.
I asked Bookman if there was something he wished people knew about MS. His first response was, “It’s stupid and it sucks.” On further reflection, this is what he has to say:
I always feel sick. I never forget I have MS but sometimes I am able to not pay attention to it. MS doesn’t keep me from doing the things I want to do. It forces me to make adjustments but it doesn’t stop me. At the same time MS has made me aware of my body and my health, helped me know myself better, and has brought me even closer to Stefanie. I have MS, but MS does not have me.