9 Oct

(This is the first of what I hope will be many guest posts from fellow sufferers with tales of woe that you shouldn’t be afraid to laugh out loud at while reading.  This week it’s my friend Teresa Mees – and I just can get enough of her funky stuff)



You know it

Two weeks ago I found out I have scoliosis.

Don’t care.

I mean, when I was in 4th grade, this probably would have been sad. Dramatic, even. (And, by the way, props to our school “nurse” who did 30-second scoliosis “screenings” which involved us bending over while she “assessed” our spinal integrity. Good miss on this one, Nurse Mary. But anyway.)

Now, I’m 41. Lacking the motivation to look up the actuarial data on a female with MS, I’m guessing my life is probably a bit more than half over. (Half-dead, perhaps? Yeah, perhaps.) (Please do NOT feel the need to correct my life expectancy in the comments.) And at this point in my theoretical life, I’m comfortable making some sweeping generalizations. Because I’m a literature geek, let’s call it “identifying major themes.”

The theme? The thing that would be a totally safe paper topic if your assignment were to examine the book of my life, the first topic in my own personal Cliffs Notes? The safe “A?”


If you looked at me and missed my crooked-ity, you would fail. Hard. As a matter of fact, if you are going to overlook my crooked, don’t even bother coming to class. Just stay in bed and sleep off your hangover.

First, there was this: when I was eight, I had a tumor. I mean, it tried to kill me and all, but it didn’t. (Score one for modern medicine!) But there’s more: it was in my neck, and it was enormous, and it destroyed a facial nerve and my jawbone and a portion of my skull. Oh, and my thyroid gland. Not to belabor the point, but since the day it was removed, the left side of my face has been completely paralyzed, largely disfigured, and more or less numb. I have been, since that day, The Girl With The Crooked Smile. (This is kind of how people describe me. I’d be lying if I said it doesn’t still hurt from time to time, but mostly… it doesn’t.) I had lots of reconstruction (which, in truth, resulted in crookedness in other parts of my body, but the details are too, well, detailed for me to write about them this morning), with limited success.  Weirdly, the thing that bothers me most about my face is that, because the skull behind my ear was removed, I cannot for the life of me get a pair of glasses to sit straight on my face. I need glasses. Plus I think they make me look all intellectual and smart. But I don’t wear them much, because they are so crooked that they make my skin crawl. (And, just to drive it home, I can’t wear contacts because of the facial asymmetry.) So I don’t wear the glasses, resulting in my vision become increasingly asymmetrical. (Crooked, even.)

In any case, I’ll skip 20 years of emotional hell and just say that the whole incident was not easy. (If I don’t win “Understatement of the Year” for that sentence, no one deserves it.) But I won that battle. I still vacillate between feeling above it all, feeling sympathetic to those who are compelled to point and stare, flipping a big “Fuck You” to those same people, or feeling vulnerable. But I am confident and self-assured. I won.

Skipping another chunk of time, a few years ago, I started having pain in my left face. Searing pain. Pain that made me cry. Pain that landed me the emergency room, more than once. Crooked, one-sided, vicious pain. I was diagnosed with trigeminal neuralgia (caused, a physician told me, by the tumor-induced physical trauma of my childhood). I was sent on my merry way with anti-seizure meds and narcotics, which made me so high that my darling (really, he is darling) father came to stay with me because I couldn’t be trusted with my own children.

But the pain didn’t go away. It got worse. My left arm became numb (and when it wasn’t numb, it felt like it was on fire). Then my left leg stopped supporting me. I ran into so many things that my left leg was a continuous bruise. Crooked. Crooked. And crooked.

Thus began The Multiple Sclerosis.

It is the Grande Dame of Crooked, really. At least for me. At least for right now. Vertigo is my biggest problem this month, and I kind of appreciate it (when I don’t hate it). Vertigo makes it seem like the rest of the world is crooked, and I’m straight. It’s a nice break from always feeling like I’m screwed up.

But cue the music! Gloria Gaynor sounds about right: I Will Survive! (Nothing pulls at my heartstrings like a cliché.) I have a messed-up face. I have the MS. But I have a killer body. I’m a trainer at a gym. I’m getting a super-whammy national certification in Pilates instruction. All this crookedness will not get me down!

So two weeks ago I was at my crazy-awesome Pilates course, and the physical therapist who is teaching was watching me practice an exercise. She said: “Wait. Do you have [pregnant pause]…?” Me: “Probably. But what are you talking about?” She: “…scoliosis?” She proceeded to do a real assessment of my spine, and it was written on my vertebrae like a chapter title. “Chapter Five: Scoliosis.”

Right, then. This killer body? A façade. It is as twisted as the rest of me.

Yes. I am crooked. To the core.

Post-script #1: I have never asked, “why me?” But I do wonder at what point this turns into piling on. I steadfastly refuse to wonder what’s next.

Post-script #2: I am not usually such a downer about any of this. I’m usually pretty damned—ahem—balanced and funny. But this week? This day? I am tired. I’m out of levity. As anyone with The MS will tell you: it is a roller coaster. To ride it intact, we have to learn to ride the emotional hills. To deny the truth of the downs would be doing myself, and (more importantly) all my beautiful friends in MS, a disservice. And that? Would be truly twisted.


4 Responses to “Crooked”

  1. momalomjen October 9, 2011 at 8:34 pm #

    Oh, I didn’t know how much I missed your writing until I read this. Thank you. And here’s hoping for NO MORE DIAGNOSES! You know, except for World’s Best Mom.

  2. Vicki October 10, 2011 at 2:57 am #

    I love you, even if you are crooked. You are one of the most beautiful people I know.

  3. Ali October 11, 2011 at 12:06 pm #

    As I told you over the phone, I would have not gotten the “easy A” on this one. You — dear sister — have been anything but crooked in all ways through my eyes. To read these aspects of your reality is unsettling to me. But I know it is all true. Entirely too true. So true that I don’t want to believe it all of the time because it hurts me to know how much you hurt. I love you.


  1. Guest Posts, The Jam, The (overly dramatic) Reading, So Special(ist) « our lady of the multiple sclerosi - October 10, 2011

    […] my friend Teresa was awesome enough to lend her Tale of Woe™ as the very first guest post on this blog.  Her post racked up the most views this little […]

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