I do not have MS, but MS has me.
The above is somewhat of a twist on the usual adage uttered by those impacted by this absolute asshole of a disease.
For those unfamiliar with it, MS stands for multiple sclerosis. There are a few different types of the disease, but they all boil down to a person’s immune system attacking its central nervous system, thereby short circuiting a good chunk of what the brain tells the body to do. It’s like the frayed charging cable for your smartphone: Sometimes you can jiggle it juuust right to get the wires to make contact and charge the phone (what it’s supposed to do) but most of the time it just sits there, the juice lost somewhere in a bad connection.
And sometimes it fights back, like with my wife’s legs.
When we met, N— was a triathlete and phenom at running 10k & half marathon distances. Our first dates included a couple of long-ish runs around lakes or area running trails. The proposal came the evening after we participated in a relay marathon. And the wedding? That was in the middle of the 2009 Las Vegas Half Marathon, where we jetted up to LV the day before, ran, got hitched, and jetted back to be at our respective jobs the next day without telling a soul for two weeks. And after that, we ran and biked and swam and had almost enough adventures to last a lifetime—even after she was diagnosed with relapsing remitting MS in early 2011, roughly a year after we married.
Explaining how MS and its symptoms work can be complicated, so I use an analogy of sorts involving tides at the beach. We know that when the tide comes in, the water level is up and that all kinds of junk can wash in with it. Jellyfish, seaweed, and anything else in the ocean. When the tide goes back out, some of that junk remains on the beach, effectively destroying what was a pristine stretch of sand. Relapsing-remitting (RR) MS—probably the most common form of the disease—works in that similar fashion: Tide comes in, symptoms flare, tide goes out, everything’s more or less back to normal. But other forms of the disease—the progressive forms—are more devastating. Tide goes in, symptoms flare, water level stays put; that’s the new normal. Then the tide comes in again, symptoms flare, water stays put; that’s the new-new normal. Repeat.
That I know of, there are just two progressive: Primary and secondary. Primary is the most aggressive form of the disease with flares in symptom activity occurring several times over a relatively short period of time, like a year Secondary progressive is less frequent in flare-ups; N—’s not had a serious flare-up in probably three years. But it was a big one exacerbated by an infection she picked up twelve or so months after the birth of our second child. It literally crippled her.
Prior to that infection, N— could still walk and get about OK on her own. But once it hit and her fever spiked, she was paralyzed. As the fever subsided, the paralysis abated but left a scar. First, she could walk with a cane; then, hobble with a walker; now, she’s in a wheelchair with immense, almost constant pain in her legs. This pain is oftentimes accompanied by spasms in her legs, uncontrollable twitching that pays no mind to where she is or what she’s doing: Sitting, sleeping, and so on.
N— likens her legs to those of a Barbie doll: They’re stiff and don’t bend. But, as her husband and caretaker who transfers her in and out of bed, wheelchairs, toilet, and elsewhere, I find them more like a firehose. Sure, her legs are tough to bend and move, like a Barbie doll’s, but when a spasm hits—and they do and at always the most inconvenient or inopportune moments—her legs fight back with such strength and ferocity that any efforts at bending or adjusting are unravelled in an instant with the need to wait for the spasm to pass before starting over again.
To say this is frustrating (for me and even more-so for her) is a serious understatement.
N— is my second wife. That first marriage disintegrated in a horrifyingly dramatic fashion over several months, but it taught me a lot what it takes for a marriage to be successful: reciprocity—give and take. And, as N— and I eloped, I thought seriously about the vows a couple takes when they wed:
I take you to be my wife, to have and to hold from this day forward, for better, for worse, for richer, for poorer, in sickness and in health, to love and to cherish, until death separates us.
Folks whose own marriages have fallen apart have blamed something or other on their spouse, or something that happened involving their spouse, to which they quip that “they didn’t sign up for.”
But, yeah, they did.
Those vows are kind of all-encompassing, covering SO much territory—all the bases so to speak. So when N— was diagnosed with this disease, we learned more about it (we were both somewhat familiar with the basics, both of us having done charity bike rides for MS) and how, as a couple, we could work with and for each other as our life together would be changed and challenged in ways most folk (thankfully) would never be able to comprehend.
This isn’t to say it’s been easy. Despite our respective schooling and analytic ways of looking at practically everything (we put more research into running strollers than we did for daycare for the first kid), we still make a lot of boneheaded decisions when it comes to our relationship. Each can take the other for granted or not speak in the right tone or do any number of other things that cause additional discord not already impacted by the MS factor. But we’re still committed to one another.
Last December marked ten years since we ran through the streets of Las Vegas shouting, “Bride & groom, coming through!” The original plan was to go back to Vegas to renew our vows, this time inviting our families to bear witness. Life, however, had other plans, though we still renewed our vows and invited family and friends. The ceremony was held in a side venue at our favorite coffee shop, and, while N— was able to stand for the ceremony, she did so with the support of a walker; her dad had pushed her wheelchair down some ramps built by the coffee shop owner just for the occasion and then the aisle to get her to the alter. Sure, it might not sound idyllic for most, but, for us, it was perfect, just like the first one.
A month later, there are still spasms in N—’s legs, and there are spasms in our relationship that cause us to have to stop and wait for things to settle down before we can come up with a plan, let alone move on and execute that plan.
For me, I continue to reflect on previous mistakes, as well as those vows. I cannot hold N— the same way I used to—not physically, anyway. There’s a lot I have to improve upon as a husband, a father, a human being. But I have a pretty good guide through those vows. And I’ve a pretty good anchor to what’s important in the form of N— herself.
While I don’t “have” her like we have most things in life, I’m glad I have her as a part of mine. And that I will cherish and hold onto long after death separates us.