Monday, January 28, 2013

No Regrets

This blog has been languishing for two reasons. First, the happy one: I have been busy getting my book, Americashire: A Field Guide to a Marriage, ready for publication in April. I could and undoubtedly will write more blog posts on this. But the blog post I have been avoiding writing is about what else has been going on in my life, namely being diagnosed with multiple sclerosis.

This did not come as a total surprise. Almost four years ago I had my first run-in with this mysterious neurological disease in the form of my first “clinically isolated event.” In laymen’s terms this meant I was slurring due to the inflammation of some lesions on my brain. But multiple sclerosis is called “multiple” for a reason, and I wasn’t diagnosed until I had my second “clinical event” this past December. This time the symptom was numbness in my face. It felt like I had been shot up with Novocain all along the right side of my head, only, unlike with Novocain, the numbness didn’t subside for several weeks. Despite the fact that my first neurologist had warned me there was a 75% chance I would develop the disease, I was still surprised when, after four years with no symptoms at all, the damn thing showed up again.

Four years ago when I had that first run-in with MS, it played an unexpected role in my decision about whether or not to have kids.  But first let me explain a little bit about the disease. MS is notoriously mysterious. Nobody really knows what causes it, there is no cure, and one person’s experience with the disease is no predictor of another person’s. Symptoms range from the temporary and relatively benign – like mine, thankfully, so far – to much scarier things like extreme fatigue and paralysis. Naturally, when I was first faced with such maddening ambiguity, I pressed my neurologist for specifics.  Wasn’t there anything I could do to decrease my risk of developing the disease?  After careful caveats, my neurologist mentioned there was one recent study that had demonstrated pregnancy may help reduce the risk.

His answer came as a shock. I had been considering the motherhood question for about a year at that point, and had been unable to muster much enthusiasm for the prospect. That first bout of symptoms had frankly been a convenient excuse to cease all thoughts of having a child while I dealt with brain scans and symptom treatments and multiple doctor visits. And now it was in my face. It struck me as a double- whammy of that old gem people like to use when arguing in favor of having a child: Who will take care of you when you’re old? Alongside that suddenly more tangible question, there was this more urgent variation of relying on a child to take care of me now.

But within a few weeks of getting that tidbit of information from my neurologist, I knew how I felt.  As I write in my book, having a child to lessen my chances of developing MS seemed “at best drastic and at worst teetering on the edge of unethical” – not unlike how I feel about having a child based on the wild assumption he or she would take care of you when you are old.  Now, four years later, childfree, and freshly diagnosed with MS, you may wonder if I regret my decision. Could I have held off this fate if I had given birth?

There are, of course, many things I have wondered about in the past two months: The implications of MS for my healthcare (eleven months to go until the pre-existing condition of Obama’s healthcare plan kicks in), for my marriage, and for my quality of life, not to mention how I, a needle-phobic, am going to deal with shooting up my medication every week for the rest of my life (or at least until a pill comes along).  That I should have had a child never got a second thought. 

Note: It hopefully goes without saying, but this blog is not intended as source of medical information on MS. Rather, I represent my personal experience with the disease and my healthcare providers. My current neurologist suggests the MS Society website as a reliable source of information and also gives no credence to the theory that pregnancy reduces risk.