Remember in the 80s when sitcoms were mainly about hilarious miscommunication or other crazy hijinks? And then every once in a while, there would be an episode dedicated to “tackling the tough issues” and it was billed as A Very Special Episode. Well, buckle up. Because this is a Very Special Post. And there are tough issues to tackle.
(Ignoring my journalism training, I’m going to bury the lede. So read on if you will. Sorry, Professor Richardson.)
Regular readers may know that I fall down more than the average person. I stopped running a couple of years ago because of a particularly bad tumble. Early this fall, in one of my (usually futile) attempts to get in better shape, I noticed that on very long walks, my right foot was slipping a little bit. I wasn’t tripping over it, but I could feel it brushing or slipping along the ground.
I went to my family doctor, who agreed that it wasn’t normal.
I went to a neurologist, who stuck a bunch of needles in my foot and leg and gave me some electric shocks. (I asked him if it would hurt, and he looked at me like I was an idiot. Of course it hurt.) He determined that I actually have weakness on my whole right side.
Next: an MRI of my brain and spinal cord. Two hours, in a mask, in a tube. This is very boring but it actually wouldn’t have hurt if I hadn’t left my hair bundled up in an awkward knot under my head. Let that be a lesson to me. (Disclosure, that is not my actual brain up there. I haven’t seen mine.)
Next: a lumbar puncture. It’s the same thing as a spinal tap (and it goes all the way to eleven). Upside: it comes with lots of novacaine. Downside: it is followed by a five day crushing headache.
None of those are the tough issues, though. This is the tough issue:
It turns out that I have primary progressive multiple sclerosis.
Shocking. Just shocking. It’s been at least a couple of months since doctors started asking me if I was experiencing any numbness or tingling (which I’m not, by the way) so a diagnosis of MS was not totally out of the blue. Do any google search for those two words and MS is all over the place. But I guess there’s no way to prepare for the news that your life is going to take a different path from the one that you’ve always expected. And not in a good way. It knocks you back.
I have a lot to learn, but here’s what I know so far. There are two kinds of MS. One is much more common, and involves “attacks,” or periods of greater intensity of symptoms, followed by periods of remission. One is much less common, and involves a steady increase in symptoms over a period of time that varies from person to person. My MRI findings (which will be verified by tests on spinal fluid and blood) indicate that I have the less common form. From what I’ve been told so far, there aren’t really proven drug therapies for PPMS. I’ll just be managing health and symptoms as best I can. I might have trouble walking in a year. Or in a decade.
What I don’t know could fill volumes. What can be predicted and what cannot? How will my family be affected, especially John? What can I do to be as strong and healthy as possible for as long as possible? What are the smartest ways to live my best life? I’m supposed to have an appointment with a specialist to help me start figuring it all out.
On a deeper level, I’ve been thinking about these things:
I need to plan wisely for the coming decades of my life. Things are going to change, and I want to plan for the worst, but hope for the best.
This moment, this very week or month or year, might be the moment when I’m in my very best physical and mental shape, and I should take advantage of that as much as I can. Right away.
I need to think about my priorities, and make sure that all my love, energy, passion and time are spent on the people and things that mean the most to me.
And actually, all those things are true for every single person, MS or not.
I got this news during a week when, tragically, many families in Connecticut had their hearts irrevocably broken in a way just too terrible to bear. And there are people every day, everywhere, who get worse news than mine. So to put it in perspective: I’m ok. My family is safe. I’m loved and supported by an amazing network of friends and family. Whatever else is coming, we’ll deal with it.
I’m sure I’m going to be writing about MS on this blog — writing about things helps me process them — but I’m not going to link to any more posts like this on Facebook. I don’t think this is the kind of thing people want to be thinking about over their morning coffee. So feel free to check back here directly if you want the updates, and please comment here rather than on Facebook.