I will never forget the night I told my then boyfriend/now husband that I had been diagnosed with Multiple Sclerosis. We had been dating for a little more than three months, and were enjoying a casual dinner at Bertucci’s (college date spot, baby!). It went like this:
Me: Um, I, like have something to tell you.
Me: Well, um, I just found out I have this thing called MS and it’s really serious and I might be in a wheelchair one day and I just wanted you to know and I totally get it if you are freaked out or anything.
Him: I’m not freaked out. Or anything. Can you pass the bread?
I had a really hard time understanding his non-reaction, and obviously hashed it out for hours with my roommates while we listened to Indie girl Rock and drank soy chai lattes. I never really understood it until years later when he explained that he “just never really thought you’d get that sick.” Me neither. At age 20 I was a type A Summa Cum Laude every day jogger heading toward a PhD and a tenure track professorship. MS wasn’t in my plans or even on my mind.
When we said in 2008 that we’d be together through sickness and through health, we meant it. We just didn’t realize how soon we’d be tested on those promises. The truth is that I’ve had MS since 2003, but even in the face of a relapse or two, neither one of us thought I was that sick.
So when my most recent neurology appointment showed disease progression, multiplication of brain lesions on my MRI, and increased disability, we were both caught off guard. It finally feels like this qualifies as the “in sickness” part of that promise.
For a perfectionist, even a recovering perfectionist like myself, this news was heart wrenching.
I was eating right, exercising, taking supplements, seeing my CAM doctors. There must be some mistake. But, there wasn’t. I’ve felt my disability and spasticity increasing and my cognition and memory clouding. I’m exhausted and run down. But I’ve chalked it up to mothering challenging children, extreme default parenting, and maybe a slight autoimmune issue. Nothing I can’t handle.
I’ve known my neurologist since I was 21, and she has been understanding about my desire to choose a complementary and alternative medicine (CAM) route instead of prescription medications (and their side effects). But she asked me, “How well are you honestly able to follow the self prescribed CAM protocol in light of your current life?” Without saying it outright, she insinuated that I would decidedly not be dancing at my grandkid’s or even my children’s weddings if I was to keep going on this trajectory. I might not be dancing at my twins’ elementary school Special Person Dance in a few years.
There are big decisions to make. My neurologist made it clear that it was time to do something (i.e. go on prescription medicine) and laid out three less than appealing choices. She also made it clear that the decision was ultimately mine and mine alone. Her recommendations from top to bottom:
- Drug 1-not quite FDA approved for MS treatment, but has the best results. A twice-yearly IV treatment. Among the possible side effects is PML, a fatal brain disease that has prevented me from going on other MS drugs in the past.
- Drug 2-another intravenous drug that attacks the immune system’s B-cells. 5 treatments over 5 days accompanied by chemo like side effects and a need to be away from my (cute, but germ carrying) kids for at least a week or two. Requires extensive blood work 1x a month for 4 years. Good for preventing steroid-requring relapses, but not really for the disease progressing that I’m experiencing.
- Drug 3-a oral immunosuppresant that has been on the MS drug market for 5 years. Sound good until you hear that possible side effects include your heart potentially stopping, macular edema, and that pesky PML. You actually have to take the first dose in the doctor’s office and be monitored for 6 hours just to make sure you don’t experience cardiac arrest.
These, are my options.
(Yes, I am picking out the scariest side effects. It’s called anxiety, people.)
I’ve thought about little else than this in the past two weeks. I’m researching alternative options* and reaching out to anyone who might know more about the choices my doctor provided. I’m still trying to “fix it” by changing my diet and trying to de-stress. I’m being more open with my friends and family, and especially with my husband.
But, I’m torn between owning up to my neurologist’s statement that the final decision is ultimately mine, and recognizing that someone else’s life is tied so deeply to the decision I make. I might be the default parent, but he is the default decision maker.
I know that whatever choose, even in the likelihood that it will be very different than the one he would pick for me, my husband is all in. He will never say we should’ve/could’ve/would’ve. He will never say I told you so. He will probably never even tell me what he would pick. He will just see me through.
I’m realizing that, for us, is what the vow is really all about.
*There is one more option in experimental phases. I will most likely designate a separate post to that in the future if I get involved with that study.