in which I am shrinking

Oceanside, Oregon

I want to talk about body issues, but I need to work my way there. Stick with me, okay?

My neurologist put me on a new drug. He told me there were good results with Topamax and Neurontin together as a migraine prophylaxis. I’ve been on the mega- dose of Neurontin for over a year now, so we thought we’d give it a try. There’s also a theory about a the tie between seizures and migraines, and Topamax is a strong anti- epileptic.

(As an aside: at this point, I’m on— well, with the Topamax, I’m on three different anti- epileptics. Damn. I should be radiating some sort of seizure- preventing forcefield at this point, actually. Where are my damned superpowers? Screw this: I’m knitting myself a cape.)

I’ve been on Topamax now since early July, and I hit my full dosage in August. It’s a mixed bag. I don’t get migraines much any more. When I do, HOLD ON TO YOUR GODDAMNED HAT, but still, I’m not having mid- level continual migraines for months straight, and I’m not having weekly spikes anymore, either.

So: headaches have improved, and that’s a huge plus. Let’s put that in the “pro- Topamax” column.

In the “cons” column, though, food has become a serious challenge.

At first, I was fine, but as I titrated up, I started to become nauseated by food. It’s no big deal, I thought. I went through this when I upped my Neurontin dosage. It will pass.

It isn’t passing.

I’m learning to work with it. I can take in a LOT of calories in liquid form via juicing, smoothies, soups, and protein shakes- if I can drink it, I can get it down, but food is hard. Some days I can do it, but most days I’m forcing down a half- meal. I have zero appetite- I don’t think of food until I see other people eating.

In addition to that, Topamax causes the body to shed weight, even without the food aversions. So- even if my appetite was normal, I’d be losing weight.

It isn’t good.

So far I’m down thirty- six pounds since the beginning of August.

My doctors know. They aren’t worried. They’re completely blase about it, actually. It’s pretty normal, they tell me. It’s just what happens with this medicine, they say. How’s your head? they ask. It’s better, I say. It’s better. But when will this stop? And then they shrug. But your headaches, they say. Your migraines are improving, yes?

They can’t tell me when this will stop, but they say it will be fine, not to worry, it isn’t a big deal. They shrug a lot. Somewhere in there, I imagine they are saying: Ladies love to lose weight! Be grateful! Stop worrying, they tell me. You will be okay. Stop being a baby, it’s not a big deal, is the subtext.

It’s a big deal to me.

I know I shouldn’t complain. Most women would be thrilled, right? Society tells me I should throw some sort of party, buy a slinky little black dress, consider myself liberated, drink an appletini or some other nauseatingly trendy overmixed crap drink.

I don’t want to do any of that. I want to cover up in hoodies and cargo pants.

As a younger woman, before my disease really manifested, my body and I got along like gangbusters. We were one: I told it what to do, and it obeyed with eagerness and grace. I hiked, I swam, I climbed anything that would stay still- I was an athlete. In the military, I lived in the gym and I trained constantly; I was ripcord muscle for SERE, perfectly prepared to hike for days with a 70 pound pack. I ran for stress relief. I inhabited my body.

For a time, my illness took that from me. I became sick, I lost the ability to use my legs properly. I lost my balance. I lost the proper use of my hands. I couldn’t walk correctly, much less run; I couldn’t hold or hand- write anything, so climbing was right out. 55 pounds climbed on to my frame from years of doctors playing Russian roulette with my diagnosis and medications, from years of being sick with no sign of hope.

The last almost- three- years have been a lot better, though, and I’ve been taking my body back. I was okay with being 55 pounds heavier and walking. I was okay with being a much rounder girl who could run 10 miles. Oh, I was so damned okay with being 55 pounds heavier and having that absolutely perfect ustrasana. Size doesn’t matter at all when you’re staring down the possibility of being bedridden or in pain for the rest of your life. Size doesn’t matter when you go from a diagnosis of chronic, progressive neurologic illness to suddenly being able to move again, to live again, to do things, to be in the world, to be in your body. Forget size, forget fat, forget how I looked: I had a body that could do things.

I was okay with that body. No, more than that- I was in love with that body, intoxicated with that body, that capable, living body. That’s what I’m saying. We were happy together. I knew that body. I taught yoga with that body. I ran with that body. I learned how it moved, how it balanced, how it worked. I took it back from my disease and re- inhabited it.

Suddenly I have this new body.

I don’t know this body.

I also don’t get the chance to know this body, because it keeps changing. If I don’t watch my calorie intake religiously- and I don’t, because there is just so much going on lately, so I just keep slipping- I lose more weight. I lost four pounds this week.

I go to pull myself into a shoulder stand and I risk hurting myself, because I no longer know how much weight I’m lifting- my legs are lighter now, and they go too far, or I under- compensate, and they don’t go far enough. I shift into a deep twist and I miss the placement of my arm because my breasts are so much smaller now. I lift my legs to shift out of bed and overshoot the hitch in my hips.

These are things I think most folks wouldn’t notice- most people barely move, just stand and sit and walk without thinking about it all. I don’t live that way- between the heightened body awareness of chronic illness and the heightened body movement awareness of being an athlete and a yoga teacher, I notice this constantly, and I feel trapped in a strange and changing body.

This all comes down to my OCD tendencies, I know. Control issues. I hate that this is happening, and that I can’t seem to stop it, and that my doctors can’t/ won’t do anything about it. I don’t like this change. My body is already an issue for me, and this isn’t helping.

Everyone notices it, too. They comment. They tell me I look great. They ask me for my secret. They congratulate me. It makes me wonder what they thought of me when I was 36 pounds heavier, when I felt at home in my own skin, when I felt beautiful and powerful and strong. It makes me feel angry and small and hard.

I know people are just trying to be kind and sweet. I know people are trained to equate slender with beautiful. Maybe it’s true. I don’t see it, but maybe they do. Either way, there’s no harm, and I’m getting better at sublimating the anger I feel when people talk about my body and the changes that have happened in the past two months. They are trying to be complimentary and kind; I need to meet them with kindness, too.

I know there is nothing wrong with my body at this or any size. It is ridiculous to hate on my body at any size. I’m just feeling off and out of place because this all happened so fast, and it all feels so foreign. The weight loss will slow down- all of my doctors assure me of that, it will slow down eventually, probably in another 15- 20 pounds at most, and then I can begin to settle into my new body. I have an irrational fear that they are wrong- that this weight loss will never, ever end, that I will shrink away into nothingness- but the educated part of my brain knows that is silly.

I’m struggling.

I’m trying to focus on the positives. Less headaches from this drug. A smaller body means I need less yarn to make a sweater.

Yeah, that’s about all I have, but it’s not a bad list, actually. Those are two pretty major pluses.


Here is the worst part, the part I’ve been working myself up to share, because it is awful and shameful and absolutely true.

Recently, peeling through Tumblr, I came across a piece of “thinspiration”, those images anorexics use to motivate themselves. It was horrible, all bones and angles; like something out of Dachau, thinning hair and skeletal pelvis, monstrous and so terribly, terribly ill. It was hypnotizing and dreadful.

I keep thinking about that image.

The truth is that as upset as I am about my body changing, about all of this, there is this horrible scrabbling clawing thing inside me that would gladly become that poor stick woman in that photo if it meant I could live without chronic pain, if I could guarantee that I would avoid being bedridden, that I could attend my daughter’s college graduation, attend her wedding, be present in her life, in my life, in the lives of the people I love. I would give up everything, wear five sweaters in the summer, I don’t care: I’d take a drug that would drop my weight to 89 pounds and turn me into a walking skeleton if I just knew I could be here. This thing inside me doesn’t care if I look like I’m 75 at 40: it wants to play with my grandbabies, goddamnit. It wants to drink tea and read books on my deck in autumn for the next 40-50 years. It wants another 40- 50 years of waking up with Sam. It wants. It fucking wants.

The truth is that even if this drug drops me to a scary, terrifying, fragile weight, if my doctors say it isn’t hurting me, I’d keep taking it, because it works. I can do things again. I’m more functional than I’ve been in ages.

The truth is that I’m still that girl who went to Afghanistan. Hard and half- wishing I were a softer girl, but I’m not. I’m not. I never was. I would give almost anything to survive. That’s what I am.

I am surprised at my own shock, every time I come across this part of myself. It’s like I forget it is there.

  One thought on “in which I am shrinking

  1. October 7, 2011 at 8:57 pm

    Sarah, I’m sorry this is sucking for you! You may be tough, but you’re not hard. You are one of the warmest, most generous, most loving people I know. And those grandbabies are gonna be some lucky.

    • October 19, 2011 at 9:42 pm

      Thank you, Kate. It’s taken me a really long time to get back to the comments on this post, but I really appreciate it.

  2. jesh
    October 7, 2011 at 10:39 pm

    Reading this is a little bit like looking into my brain; I’m doing the topamax with a side of being unable to eat thing too.

    Next week I will bring you hugs and buy you a drink, if you’re up for it.

    • October 19, 2011 at 9:45 pm

      I wish I’d had a second to grab that drink this past weekend. How are you holding up? Are you able to deal with liquids at all? Feel free to email me- I’d be happy to talk.

  3. October 8, 2011 at 3:58 am

    I hope the weight loss stops soon. These medications can have such miserable side effects and even when the doctors have our best interests in heart, they can not often empathize enough.
    My loved one with MS has had remarkable improvement with vitamin D. It can be a safer thing to try for MS, if you are not already taking that.

    • October 19, 2011 at 9:47 pm

      Ummeyusuf, I agree- medication alone isn’t always the answer. Vitamin D has been a part of my therapy for a while now, and it helps a great deal. I take what would seem an enormous amount of Vitamin D to most people. 🙂

  4. Adee (kiwigirl42 on Rav)
    October 8, 2011 at 7:19 am

    I have chronic migraine and its shit. i’m glad your migraines are lessening but topamax is a tough drug. Unfortunately any dose over 12.5mg gave me a raging frontal headache so I had to stop it but I certainly found it hard to eat. I’d give my left arm or my legs if it meant my headaches stopped. I’ ve had really bad ones every day for 7 wks now and its an unbearable life – good luck x

    • October 19, 2011 at 9:56 pm

      Adee, I’m so sorry the Topamax didn’t work for you. Is anything else working for you lately? I’m finally coming to a place where food is becoming less of a challenge- not easy, but bearable. It’s still not a cure, though. I hope you find something that gives you some relief.

  5. JuliaA
    October 8, 2011 at 11:53 am

    you write beautifully–intelligently and expressively.

    it is so strange, the changes our bodies go thru with chronic illness. i was ridiculously thin at one point, and people told me i looked great, not knowing that my thinness was due to chronic illness. then i gained, back to my former body, and it took a long time to adjust–you get used to a body, its shape, its functionality, and that shifts and you feel displaced, lost. (tho gaining *functionality* never feels wrong–it’s such an incredible rush!)

    i’m losing weight again, and it very much is a control thing. i can’t control my energy, i can’t get around well, i feel so little control of my body sometimes. but i was shaped a certain way, and used to it, and now that’s changing. despite the elastic waistbands of the bedridden lifestyle i feel strange in my clothes.

    seems like it shouldn’t be a big deal so much. but i cling to any control i can manage, and my body’s size seemed like one constant i could count on.

    “…ithis horrible scrabbling clawing thing inside me that would gladly become that poor stick woman in that photo if it meant I could live without chronic pain, if I could guarantee that I would avoid being bedridden…”

    i would be happy being skeletally thin for that too. or heavier than i’ve ever been. the desire for robust, dependable health–it’s so, so strong.

    • October 19, 2011 at 10:00 pm

      Thank you, Julia. I spend so much time feeling as though most people have no idea what I am feeling- that no “average” or “normal” person would understand these things- that I can’t tell you how much it means to me to be heard, although it makes me sad that you understand what I’m saying because you’ve been ill as well.

  6. Susan
    October 9, 2011 at 10:54 pm

    Sarah, I’m proud of you for naming your terror about embracing the side effects of your medications. That took a huge amount of courage to first name them for yourself and then say them out loud on the blog. Truly courageous.

    Interestingly the same sort of conversation has been happening here. About body, changes, disease, and medications.

    In this house the next action is working through the how of getting to the goals in a healthy way. Step by step we will get there in this house. Naming the fear was a very hard first step.

    • October 19, 2011 at 10:02 pm

      I think that giving a name to the fear- and then really voicing it, giving the idea room to flesh out- that’s the worst part, isn’t it? After that it’s just working with the idea. At least, I’m hoping it gets easier from here. All the best to you.

  7. Mel
    October 10, 2011 at 9:10 am

    There aren’t really any good words here. Just sending love and support. And thinking that being “hard” and… fierce? Determined? Hard-wired to LIVE? are different things maybe. You’ve never struck me as hard.

    • October 19, 2011 at 10:02 pm

      Thank you, Mel.

  8. Megan
    October 16, 2011 at 10:27 am

    Hey Sis. I don’t care if you’re 300 pounds or 90 pounds. You are and always will be my big sister and I love you no matter what. I’ll be here for you running marathons or bedridden. There’s nothing wrong with wanting something as important as an ability to live your life. You appreciate what most take for granted, and you know what’s important. Your ‘hardness’ makes you strong, but it’s not hardness like you equate it to be. Your ‘hardness’ is strength. As someone earlier said, you’re warm and kind and loving. Love always, Megan.

    • October 19, 2011 at 10:02 pm

      I love you, Megan.

  9. October 17, 2011 at 9:15 pm

    Sarah, you’re beautiful no matter what. I know migraines suck, we’ve discussed this =P My solution is to write down every time you eat or put it in your phone. Then, when you have time, calculate your calories, carbs, etc and decide the best route to take in maintaining your intake. You may also want to see a nutritionist who can help you with this issue. I honestly wish I had the losing weight issue, but my meds make me put on weight. it’s horrible.

    You will be strong and work through this as you have worked through everything. Keep trying and everything will level out as it did before. Goodluck and much love!

    • October 19, 2011 at 10:04 pm

      Hey, Liz. Agh, a food journal. You’re right. I hate it, but you’re right. I am working with my doctor and a nutritionist is in the works (waiting on insurance approval- I have to lose exactly 40 pounds before I get to see one).

  10. October 19, 2011 at 4:23 pm

    From one chronically ill Sarah to another.. thank you. This. This exactly. Not the same, but the same enough. It is almost impossible to summarize or explain to someone how it feels to always be at odds with the body you inhabit, and try to figure out or come to peace with.. only to have it slip away again as soon as you settle into some kind of state, any state. Going with the flow and drowning have so much in common that sometimes it is a little hard to hold on.

  11. Cali
    January 12, 2017 at 9:04 am

    I know this is from so long ago, but I wanted you to know how much I appreciated this. I can relate to every bit of this. Four years ago, I lost 30 lbs in two months on Topamax. I got down to 83 lbs. I thought I was going to die, honestly. And people kept saying how great I looked. Just. Thank you. I thought I was alone in this.

  12. Patricia Hare
    July 15, 2019 at 11:57 am

    I just came across this. You could be writing my life story. This is me- and no one understands. I am sorry for you as I am sorry for myself. Nothing to do but carry on…

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