Keeping life normal in the face of extraordinary pain

Matt-Fugate_home_1574_800How would you live, if you had a condition nicknamed “the suicide disease?”

My husband, Matt, has MS. Multiple Sclerosis is a nerve disease that affects the myelin, or protective coating, of the nerve; it means, literally, “many scars.” MS is an unpredictable disease that afflicts about one out of every 750 people in the United States, the majority of whom are women. There is no known reason for why someone may get MS, and there is no cure.

Matt was diagnosed seven and a half years ago, several months after our second daughter was born, so we are not newbies by any means. But we have been relatively lucky. Until two years ago, Matt was basically in remission.

Two years ago, the MS hit Matt’s trigeminal nerve HARD. The trigeminal nerve is responsible for sensation in the face and motor functions like biting and chewing. It’s the largest of the cranial nerves, and has three major branches that lead to the eyes, the mid-face, and the jaw. When the nerve is compromised, it can cause excruciating pain. Matt says it feels like an ice pick is being jammed up through his molars through his eyeball.

The official term for this affliction is trigeminal neuralgia (TN). Its nickname is the suicide disease.

Matt’s most recent flare started peaking over Thanksgiving weekend – a time when there was a lot of socializing to do (talking can hurt) and eating (chewing can hurt). At one point, the pain was so intense that Matt dropped a soft-shell taco he was trying to eat and cried out involuntarily, tears in his eyes. At the dinner table, in front of our daughters.

We’ve never kept Matt’s MS a secret from the girls.  They’ve watched him inject his medicine three times a week, we talk about it in front of them, but it was truly intangible to them until this flare. Fortunately they are compassionate little girls, and even at 9 and 7 understood instinctively that their very best behavior was called for, at least for a little while. We explained that Daddy’s pain was temporary, that we were sure the doctor would find a new medicine that would help, despite our own fears that maybe we were wrong and our luck was running out.

It didn’t surprise me that both girls had trouble getting to sleep that weekend. What surprised me was that they were afraid to explain why. “Are you worried about Daddy’s MS?” I asked.

Yes, they nodded. Then the younger of the two said, “What does it mean for his life?”

Good question, I thought. Until the TN, we thought the worst that could happen would be Matt losing some or all of his mobility.  We planned for it.  When we moved into our house five years ago, our requirements were simple: to find a house that had everything we would need on one level; bedroom, bathroom, living room, kitchen. We were hedging our bets, and we lost. You can’t really have an environmental plan for TN. It doesn’t matter where the rooms in your home are. How do you live with unpredictable pain so intense that its nickname is the suicide disease?

“Do you mean the length of his life?” I asked her. She nodded solemnly. I explained that people with MS live a “normal” lifespan, and she needn’t worry that Daddy was in any imminent danger. In an effort to help her see how normal things really were, I said, “Daddy is still Daddy – he’s still doing everything he always does; he’s even still doing the dishes and laundry!”

This was enough to help her sleep… but mine wasn’t so restful. Matt is a stand-up comic. His voice is his instrument. He often says that he would prefer to lose his mobility to his voice. If he loses his ability to do his job, what does that mean to his life? Forget the physical pain – the psychological pain of not being able to pursue the vocation you love, at least in some form, is unthinkable. I’m a fixer, a solver of problems, but this one is way beyond my scope. All I can do is be positive and try my level-best to keep everyone calm.

Since Thanksgiving, Matt has been able to switch to new meds and has gotten through what we hope is the worst of it. He’s had several successful shows, and is working on a TN bit (that’s comedy jargon for “joke”). No spoilers – you’ll have to catch him at his next show (Minneapolis, January 3-4) if you want to hear it!

In the meantime, I think the answer to “how you live with the suicide disease” is, “as normally as possible.” Because life is too precious to waste with worry.