It Was 20 Years Ago Today

A funny thing happened to me on April 2, 2001, kind of a belated April Fool’s joke: My neurologist told me I had multiple sclerosis.

For weeks I had found myself fervently praying that I had Lyme disease, whose symptoms sometimes mimic those of MS. No such luck. An MRI scan, a spinal tap and blood tests, none of them individually conclusive, together pointed to the fact that my body had decided to start attacking itself. Apparently thinking they are doing the right thing, certain misguided cells have taken it upon themselves to destroy the fatty myelin sheath that coats the nerve cells in my brain, leaving scars that prevent the nerves from doing their jobs.

Why, I wonder, couldn’t they attack the fatty cells in my thighs instead?

As it stands, I have to get used to the idea that my favorite organ is under siege, and that there’s not a lot I can do about it. Despite huge technical advances in the last decade, despite the introduction of new drugs that might help slow the disease’s course, despite the heroic efforts of doctors and researchers all over the world, MS remains poorly understood. Nobody knows what causes it. Nobody knows how to prevent it. And nobody knows how to make it stop.

That, my friends, is the lede of the story I wrote for The Washington Post health section in August, 2001, a few months after I was diagnosed with multiple sclerosis.

If you had told me then that, 20 years later, I’d be here to blog reflectively about an incident that had shaken my soul and scared the shit out of me and made me, for the first time, really reckon with the harsh facts of mortality and ability and cognitive function and the prospect of being a burden to my loved ones… well, I don’t think I would have done one thing differently, to be honest.

I am among the extremely lucky: my MS was diagnosed early, apparently, and my incredibly wonderful neurologist Stephen Conway — shoutout!!! — immediately prescribed daily (now thrice-weekly) injections of Copaxone (which I at first had to draw from a vial into a syringe before injecting, but which now comes in a handy pre-filled syringe), and, knock on wood, my MS has barely progressed. Like I said, I’ve been so very lucky.

In the meantime, so much has happened: my two amazing children have become two amazing adults, leading lives of which I am so proud I can hardly believe it. I have suffered from debilitating OCD — and recovered. I have suffered from all-consuming bulimia — and recovered. I have had breast cancer — and, so far, at least, I have survived. I have left a long marriage, moved into my very own home for the first time in my life.

Some might look at that and say, wow, she’s had a pretty rough time of it.

I look at that and think, wow, I am so very lucky — and so very grateful. I’ve found joy, strength, and inspiration in my independence. I’ve traveled alone, lived by my own rules, followed my own schedule, read when I want to read, frolicked in the ocean, and made so many dear friends along the way. Life, as they say, is good.

Since I wrote about my diagnosis, much has changed: whereas there were but four approved DMTs (disease-modifying therapies), including Copaxone, when I was diagnosed, there are now more than a dozen, and more are being developed and released all the time. Awareness and understanding of MS, a complex and confusing condition whose only consistency is its inconsistency, has increased by leaps and bounds, and the support network for people with MS and those who love and care for them has grown exponentially.

But, for all of that, multiple sclerosis remains an elusive, and for now incurable, disease.

I don’t make a practice of soliciting for charitable causes; the ones I believe in and support may not be the ones you believe in and support, and I don’t expect my friends to shell out their hard-earned money to help my pet causes. But just for today, on this 20th anniversary, because I honestly believe that it’s an honest, hardworking, and effective organization, I’m allowing myself the luxury of suggesting, if you are so inclined, to make a donation to the National MS Society. Not for me; I’m fine. But I think of all the young people (MS most typically is diagnosed among women ages 20 to 40; men with MS tend to suffer more challenging courses) receiving the diagnosis I received 20 years ago today, and I’d love to think the information they glean when they Google is far less grim than what I encountered way back then — and my heart just wants to help.

Before I close, I want to thank my daughter Sophie, my son Charles, and all the phenomenal friends and family members who’ve stood by my side throughout my journey.

Like I said: I am so very, very lucky.


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