If I had been
to write this as my third grade summer assignment, my title would have been,
“The Worst Summer Vacation Ever!”
But I haven’t
been in third grade in a long, long time and this wasn’t a summer assignment. And if I’m truthful, it wasn’t the worst
summer vacation I ever had either.
Though it was far from the best, it surely wasn’t the worst. I don’t even know if I could call it the most
memorable one either. It was just the
least convenient.
When I talk
about the summer of 2009, I refer to it as
“when I got sick.” Inevitably, people who aren’t in the know
will ask what happened, and when I tell them I was diagnosed with multiple
sclerosis, the response is always some variation of the following: their faces
contort with a mixture of discomfort and sadness like I just told them I was
consecutively fired from my job, my dog ran away, and was given five more
minutes to live.
“Oh I’m so, so sorry!”
I assure them
that I’m fine, that it’s no big
deal. I don’t think they believe me,
that I have my game face on, that I’m just trying to be brave. This is not the case. I am the biggest complainer you will ever
meet, quick to let the world know when I’m upset over something, first to
comment about bad wait service, vocal about the injustices of the world. And I’m also a terrible liar. If I wasn’t fine, I certainly wouldn’t say I
was.
But I am
fine. Really. I am.
This isn’t
saying that what I went though wasn’t horrible, because it was. I said a million times that I wouldn’t wish
those six weeks between June and August
on my worst enemies (and believe me, I have quite a few of them!) Having MS
sucks. It’s annoying and frustrating and
yeah, at times really scary too.
It was not, however, the end of my life.
Soon after I was diagnosed, my favorite cousin called
going on. He’s super spiritual and does yoga for an hour and a half every day and only eats organic and preaches healthy living to anyone who wants to listen (and even to some who do not). Despite his quirks, his was the first diaper I ever changed 29 years ago and that bonds to you to a person, so I was genuinely happy to hear from him. After the requisite pep talk that came from every person who found out, he said, “You know, Rebecca, this is going to change your life. From now on, you’ll constantly refer to your life as pre- and post- MS.”
Um, no, no I won’t.
I know he meant
well, but if anything, what he said just pissed me off. Getting diagnosed with MS was not some
life-changing, life-affirming thing that I was grateful for. I have heard accounts of cancer survivors who
have said they were actually happy to have gone through the experience because
of the gifts it brought them. This is so not the case with me. If I could go back in time and magically take
it away, I would do it in a heartbeat.
Believe me, I had other things planned for that summer, and lying on my
couch, numb from the neck down, watching hours of bad television was not what I
wanted.
I have a friend who, when her sister-in-law got diagnosed with breast cancer, started making and selling stained glass pink ribbons to raise money for a cure. I can’t tell you how many male students of
mine wear “I love boobies” wrist bands (though I’m sure it’s more because they
love boobies and less about cancer awareness).
I even read about someone who dyed her poodle pink (with vegetable dye, so no reason to be outraged) to raise awareness. To all of them, I say, good for you. If that works for them and makes them feel proactive, then they should go on with their bad selves!
MS is not the banner I choose to live my life
under. I saw someone at the local
grocery store with a license plate that read MS WALK. Really?
I don’t know anything I feel so passionately about that I want to
advertise it everywhere I go. Maybe that
means I’m a terrible person because I don’t feel that strongly, but I just
don’t. Having MS is a thing in my life,
but it is not by any stretch of the word my
life. It’s a thing, but it’s not the thing.
I am fully
aware of how horrific MS can be. Lucky
me, I have a fairly mild case that is being aggressively treated. I haven’t had the debilitating exacerbations
that I’ve read about online and heard about through friends of friends of
friends. I know this is a serious
disease that has ruined many people’s lives… but it hasn’t ruined mine.
MS = no
fun. I wish I didn’t have it, but it
really isn’t that big of a deal. I am
well aware that because I do indeed have a not-so-serious case, I don’t have to
deal with the majority of crap that most people with MS have to deal with. This isn’t life-ending. It isn’t life-affirming. It just is.
What good will it do to spend hours bitching and moaning about it? I
am just saying that for me, I needed to see everything that happened to me in a
different light. I needed to accept it,
make peace with it, and yeah, even laugh about it. I mean, what else can I do, really? It isn’t like my life stopped when I got
diagnosed. There is still a kid to
raise, bills to pay, a house to clean, a job to do. Life hasn’t stopped because I found out I
have MS, and really, if you want to know the truth, life now isn’t a whole lot
different than life before June 2009.
MS is
inconvenient, but you know what, a lot of things in my life are
inconvenient. I have thin hair and I’m
going grey, I’m chubbier than I want to be, and I occasionally get psoriasis. All inconvenient things, but I don’t plan on
getting a license plate for that any time in the near future.
This is not a
survivor’s story; it’s just a story, my story. Bad things went down those six weeks, and –
call it therapy – I need to talk about it.
I’m angry at the medical community for telling me nothing was wrong with
me because they couldn’t figure it out.
I’m angry at my body for attacking itself. I’m angry at the mean things that coworkers
said about me when I was in the hospital.
And, because responding with physical violence probably isn’t a good
plan of attack, I guess I’ll write it down.
No comments:
Post a Comment