I was diagnosed with multiple sclerosis almost 4 months before my middle child was born, so all 3 of our kids have never really known me without it. Nothing drives home the fact that you have a disability quite like a kindergartener’s crayon drawing of you in a wheelchair. As they grow, their awareness of “daddy’s sickness” is growing too and they’re starting to ask questions. They know it’s in my brain and given the electronic world they’re growing up in, they seem to readily accept problems with connections (wiring) between my brain and the rest of me. They also understand that it’s not like a cold and or an infection that can be caught or given to someone else. Someday they’ll learn about genetics and heredity and I’ll have to bite the bullet and explain that because I have it, their chances of getting MS are a little higher than average.
The kids were all born within 5 years of my medical retirement from the army, so they only have a few memories of me actually being in. However, there are pictures and stories of various shenanigans so it shouldn’t be surprising that after a talk the other day about me being to blame for some………ok, most of my scars, one of the kids asked if I had done something to cause my multiple sclerosis too. How do I answer something that I’ve asked myself countless times? Why and how did this happen? Admittedly, I’m more concerned with what we do now but I do realize the importance of unraveling the how and why.
A local neurologist diagnosed me. He’s an excellent neurologist and has a few other multiple sclerosis patients, but he’s a headache specialist, so, soon after the diagnosis, I started seeing an MS specialist. At our initial visit, she asked a ton of questions and at one point remarked that even though MS isn’t inherited per se, it does tend to run in families and I had no family history of MS whatsoever. At this first point, she had no idea about my army background and said that minus a family history, there were a couple of theories being floated around as to how this happened to me and that they both surmised a genetic predisposition and some sort of environmental factor or event that triggered the immune response. She then asked if there was a chance I could have been “over” vaccinated and therefore had an overstimulated immune system. Hmmm, I’ve had a few over the years. All the normal ones, plus smallpox, yellow fever, rabies, anthrax, and plague. She then asked if I had been exposed to anything else, another illness perhaps, that could have put my immune system intohigh gear, so I had to share that I’d caught Q-fever in Afghanistan 6 years prior and had just finished an 18 month, 2 drug regimen for the chronic version when it came back to haunt me.
On top of those two possibilities, a year or so back, I read an article about a possible connection between head injuries and MS. As luck would have it, an old SF buddy was in town and over dinner reminisced about a time when I was the tail gunner in a truck and had been knocked out when a tree branch hit me in the back of the head just under my helmet edge and slammed me forward into the gun. My wife laughed and said that she was surprised I’d never mentioned it before. When he told the story, I instantly remembered the event, but had forgotten it entirely up to that point…….almost 16 years. I’m no expert, but no recollection about being knocked out can’t be good. I remember my other concussions (that was 3 of 4) so that probably makes it worse. The jury’s still out as far as a connection with MS goes, but I seem to be maxing out on possible contributing events.
So I guess the answer to the question of whether or not I brought this on myself is……..who knows? If there is a way, or ways, to contribute to developing MS, I’m guilty of a few I suppose, but what about everyone else? Some have a family history, but many don’t. Are there a huge variety of triggering events (ex.Epstein Barr Virus), or is it completely random? Remember consistently inconsistent? Maybe MS is also randomly random. Everyone who had EBV or even shares my experiences doesn’t have MS, so it’s either random, there’s many, many triggers, or there’s something completely different waiting to be discovered.
My kids are way past the point of thinking I know everything, so I guess it’ll be OK if I just say “I don’t know.”, when asked this question. I may never know how it happened, but it’ll be OK with me if they find the answer to “what do we do now”, before they unravel the mystery of “why”.