My wife’s brain has not had any activity in about five years. Which is awesome.


My wife’s brain has not had any activity in about five years. Which is awesome.

I’ll admit that, when we started dating, I didn’t really know what Multiple Sclerosis meant. I barely knew what it was, but had no clue why it was “Multiple Sclerosis.” For those like me, “sclerosis” is an abnormal hardening of tissue, basically scar tissue. Multiple, obviously, just means more than one. Traditionally, if you have one bit of abnormally hard tissue in your nervous system, that’s bad, but that’s all it is. You get a second one – boom, that’s MS. (Today, they’re quicker to consider the possibility of MS even at the first sighting.)

The sclerosis are referred to as lesions, and the formation of new lesions is referred to as activity. So MS is about the only situation where it’s good to say there’s no activity in someone’s brain.

Rebecca had an MRI Monday, and the results came back – no new activity since the last MRI, and none for almost five years.

I share this because a friend contacted me earlier today to ask about her experience; his doctor suspects he may have MS. I share this to say there is hope. I share this because not that many years ago, five years without activity would have been a miracle. I share this to say that the war against MS is being fought, and it is being won. I share to say, keep fighting.

MS Awareness Month 2018: Blessings and Monsters


March is Multiple Sclerosis Awareness Month.
 
Last year, Rebecca and I really couldn’t help but promote MS awareness when we spent the better part of a week in Cullman so she could receive what may be her final MS treatment. You take off that long, and folks are inevitably going to be aware.
 
MS Awareness has become a different sort of thing for us over the past year since that treatment. Our awareness of Rebecca’s relationship with MS has evolved in that time. Free of some of the worst of it, and gradually and tentatively letting go of some of the fear of what tomorrow could be like, I think we’re both a little more of the realities of day-to-day post-Lemtrada life with MS. There have been days where it’s so obvious that the progress since last March is incredible. There have been days where it’s obvious that an indefinite treatment is not the same thing as a cure. Rebecca has always amazed me at how she perseveres; it’s easy for someone to not know what she deals with. I admire her so much, and have such a deep respect for her strength.
 
Without question, though, MS Awareness for us over the past year has included a deep-seated awareness of how incredibly blessed we are – to live in the time we do, to have the resources we do, to have the doctor we do, to have the community we do. Take any of those things away, and life could be very different.
 
One member of that community is Amy Kibbey, who has shared with Rebecca experiences from her own battle. I’m grateful to her (and so many others) for that, but I also really respect her efforts to share the blessings we experience with others.
 
Rebecca has been a beneficiary of the National MS Society, an organization that Amy supports each year through Walk MS. Here is a link to how you can support her Walk. The fight against MS is a fight which can be won and is being won. The Walk, and the Society, really do make a difference.
 
I’m not asking people to give. I really believe these battles are fought best by passionate people. Everybody has a battle. MS may not have touched your life. For you, the monster facing you or your family may be diabetes or cancer or any number of others. It so, I’m not asking you to fight MS, and don’t judge you for not. Fight your monster. Fight hard.
 
But I did want you to have Awareness.
 

Multiple Sclerosis Awareness Month: The Monster She Fights


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Yesterday began Multiple Sclerosis Awareness Month.

Appropriately enough, Rebecca Hitt and I spent the day in Cullman for what could possibly be her last MS treatment. Possibly. Hopefully.

Rebecca’s experience with multiple sclerosis isn’t really a secret, but it’s not something we talk about a lot either. Honestly, it’s just sort of something that is.

She’s fortunate. We’re fortunate. If you follow us on Facebook, Rebecca doesn’t seem like someone struggling. We live full lives. There are people who have struggles with MS far far greater than she does. For Rebecca, it manifests in many “little” ways — heat can be more oppressive, she feels random constricting, her balance wanes randomly. It’s not always there, but it’s always nearby.

It’s easy not to know it. I respect her greatly for that. I’m half a foot taller than Rebecca. When we walk side by side, for every three steps I take, she takes four. You don’t notice it, but she’s always working a little bit harder. For those around her, that’s what her MS is like. She’s walking beside you, and you never notice how much more she puts into it than you, how much harder she works for it than you. It’s easy to miss. She makes it easy to miss. I’m proud of how brave she is. I’m proud of the positive attitude with which she undertakes her days.

For others, MS is a very different thing. They can’t walk beside you, because they can’t walk. It’s a condition that manifests itself in so many different ways. For some, it’s unnoticeable for years. For others, it’s crippling from its first appearance. We’re fortunate that hers is more benign. But we’ve also been always aware that could change at any moment. In MS, your body attacks its own nervous system. If you’re lucky, it does so in a way that causes mild annoyance. If you’re unlucky, it does so in a way that impairs you dramatically. Either way, it does so suddenly, randomly and without warning. We’re grateful for today, but we never know about tomorrow.

Save that, hopefully, now, we have some idea. Rebecca yesterday completed the second round of a relatively new treatment called Lemtrada. She took infusions for five days last year, and for three days this year. The treatment,a repurposed chemo, strips away her immune system. A new one grows, which, hopefully, decides not to attack her nervous system. It’s not a cure, they tell me, but a treatment that, hopefully, has permanent results. I understand some of it, but if you ask me too much about it, you’ll discover it’s one of those things that for me borders on Clarke’s Third Law – “Any sufficiently advanced technology is indistinguishable from magic.” I work at NASA, and this stuff befuddles me.

So far, it seems to be working. There’s noticeable improvement already from last year’s treatment. Hot days are less oppressive. The random constricting is less constrictive. She has more energy. Hopefully, those trends will continue and be amplified by the second round. We joke about that last change. At eleven years my junior, it can be hard enough to keep up with her as it is. If she gets any more energy, it’s going to be hopeless. I’ve joked that they should just half-Lemtrada her so I still have a shot.

But as nice as the improvement to the symptoms are, the biggest change will be not having to worry about tomorrow. She’s not had any new activity, any new lesions, any new attacks on her nervous system since round one. That’s a good sign. We’re never beyond worry – this is a new treatment, less than a decade old, so no one knows what year ten looks like. And nobody knows for sure what year two for Rebecca Hitt looks like. But maybe we can worry a little less.

We’re blessed. Crazy blessed. Blessed to live in a time that this is possible. Blessed to have insurance that will pay for it. Blessed to live near a doctor – Dr. Christopher LaGanke of North Central Neurology Associates – that’s been a pioneer in this treatment. (When we started dating and she told me about her condition, I pointed out that now that she was working in Huntsville, she could probably get a better doctor here. She just told me to Google her doctor. I did. I never suggested that again.) We’re blessed by casual miracles, wonders so seamless you miss the wonder of them. But they’re there. And we’re grateful.

So that’s my Multiple Sclerosis Awareness Month story; my part for boosting awareness. I generally don’t ask or encourage others to give or work for a particular cause, and particularly not health-related ones. The sad reality is we all have our own monsters. If you’re reading this, you have felt the sting of cancer or heart disease or diabetes or any of the other thousand natural shocks that flesh is heir to. I believe we fight hardest when we fight our own monsters, so encourage you only to do so. But we become stronger through understanding each other’s monsters. And by knowing there are others fighting ours alongside us.

I’m honored to fight alongside Rebecca. I’m humbled by the way she perseveres and by the attitude she maintains. I admire her spirit and her strength, and proud and grateful to be part of her story.