Around February 14, 2013, I marked seven years of remission from Multiple Sclerosis.
If you’re wondering what that means, well… It’s complicated. Multiple Sclerosis is an annoying, persistent, enigma of a disease. Like many women, I was diagnosed with the Relapsing/Remitting form, meaning I experience discrete attacks, and in between I get better (but not always entirely). The attacks = relapses, and the periods in between = remissions.
I could go on and on about what = an attack, what my past with this disease has been like, and what my fears for my future are. But lately I don’t feel much like talking about that. It feels like MS is something of a ghost haunting me now. Some relic of something really bad from a long time ago and if I stay real quiet, maybe it won’t notice me and will just go away…
So the short of it is…
On Valentine’s Day 2006, I entered the hospital with a clinical pronouncement of “relapse” for the last time. I underwent treatment there for 5 days, and was then released on home care for another couple of weeks. It took about two months, but I recovered: almost completely. I expected, as was the pattern up until that point, that the whole thing would repeat again a few months later. Only it never did.
So I moved to California and started a new life. And here I am, seven years later.
Every year on Valentine’s Day since then, I’ve celebrated this fact by overturning one of the habits I believe helped me in my battle back from chronic illness:
I eat cheese.
Cheese was my favorite food, and I gave it up in 2005 along with red meat, poultry, all other dairy, and eggs in an attempt to eat smarter for my brain. But on (or around) Valentine’s Day, all bets are off.
There is such a thing as too much austerity. You just heard that from me.
So, Valentine’s Day this year rolled around, and looking at that lucky number 7 scrawled on my calendar, I planned the biggest cheese adventure I’ve ever had. One of my best friends, Kim, flew out from Detroit to spend the whole President’s Day weekend with me. I spent Saturday parading around the East Bay with her and a whole group of friends, eating everything dairy I could get my hands on (and drinking beer). On Sunday, we took off to Napa with Marlene for two more days of the same (except, sub beer for wine).
This was the best Cheese Day celebration ever, and not just because I eked out another year without a hospital stay. The real reason, like the disease itself, is more complicated and nuanced…
You see, remission from MS isn’t like remission from cancer. The disease never really goes dormant and, in fact, sometimes you can be getting worse even if you’re “in a period of remission.” Turns out that’s what’s been happening to me these last few years…
Just a few weeks before my Cheese Day celebrations, I got a new set of MRIs done. Those MRIs came back showing that the lesion load on my brain has been slowly increasing over the last two years.
At first I was shocked… I mean, how could that be happening if I’d been feeling so good? How could I not be having any attacks if my brain was deteriorating?
Then I was concerned… Should I change something in my treatment regimen? Were my medications not working any more?
Then I was really annoyed… Did this mean I didn’t have a f#@%ing right to EAT CHEESE ON VALENTINE’S DAY? Goddammit.
But THEN… I went outside and pruned my rose bushes. And a week later I went on vacation. And I told almost no one about the results of my MRI. I decided the cheese show would go on.
Because my brain has been deteriorating the last two years. That is a scientific fact. And at the same time, I have not had a relapse.
In fact, I managed to get married 2,500 miles away, adopt and train a rescue puppy, buy an old house, renovate it, and start a new job. All while having a brain that looks like swiss cheese (no pun intended! yum…) on gadolinium enhancement.
How that’s possible… I don’t know. Except that I am obviously even stronger than I thought.
And so to celebrate that fact, I ate:
- 2 pieces of pizza
- A grilled cheese sandwich
- Half a plate of macaroni and cheese
- 2 mac n’ cheese fritters
- A cheese quessadilla
- A custom-made fancy cheeseplate
- A veggie sandwich with cheese
And to all of you who shared it all with me, thank you. No matter what happens between now and Valentine’s Day 2014, we will celebrate again…
See all our pics of Cheese Weekend here.