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.
I don't think having a child would have made that much difference in terms of MS. My grandmother, her brother, and his two daughters had/have MS. My neighbor's mother has MS.
ReplyDeleteMy father was never really able to help care for his mother - we lived too far away. I remember my grandmother handled her MS with amazing grace and there was always an in-home health worker to take care of her. I I think having a strong support network is the best thing (besides awesome health care) that you can have whether or not you have kids.
Just wanted to say I stopped by and read your post.
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