After saying, “I can’t march for miles,” I sign up for a 5K. Because: denial.

I’ve been writing about the election, and what the tension between being called to action and also being someone with a chronic invisible illness (fibromyalgia).

And I’ve written before about how:

  1. I have very little energy.
  2. I struggle to exercise.
  3. I’m in a lot of pain, most of the time.
  4. When I exercise too hard, I’m in terrible pain all of the time.
  5. The phrase “exercising too hard” in my case can refer to:
    1. Walking more than two city blocks.
    2. Getting out of bed too quickly.
    3. Doing a forward bend in yoga.
    4. Taking a bath.

What I haven’t written about before, and probably should, is that a big part of having a chronic illness is the frustration of looking normal (or in my case, like a regular out-of-shape fat person), but being in a lot of pain. You look normal, but you aren’t. The reasonable expectations of others are yours to dash at every turn. What fun.

Some people with an invisible illness wise up, get vocal, state their needs. Other people try to keep pretending they’re normal. I’m somewhere in the middle. I used to be way over on the side of pretending I was normal. I constantly over-did things. Pretty soon it became very apparent that this wasn’t a sustainable way to live. But I still like to see just how far I can push the envelope before I fold entirely, into a crumpled heap of paper under the desk. I don’t know why. I’m not ready to pull at that thread.

For instance, in the yoga incident on Sunday, I was invited to move into a somewhat quick forward bend. I knew I shouldn’t. I knew this class full of yoga teachers would advocate strongly for me (or anyone) to make any modification I needed in any pose, no matter how trivial. Or they’d be fine if I just stood there and smiled while they all did the pose. I knew this. Nevertheless I had the following conversation with myself:

Head: Forward bend, okay, I got this. Piece of cake! Mmmmm….cake. Can we make cake later?

Back: I AM NOT ENTIRELY SURE YOU HAVE THIS. Can we consult for a moment? I’m really not in top form right now. Maybe get a block? Maybe just stand in mountain pose while they run through this sequence?

Head: Did someone say something?

Back: …

Head: Here we go….   <bends forward>

Back: WHY?

Head: Huh, I seem to be in a lot of pain. Oh! And we’re doing another forward bend. Okay.

Back: <throws up hands>

Head: Ohhhhhh no. This is bad. I think I just broke the muscles. All the muscles in my lower back. Starting today, I will reconsider my life choices.

Back: I hate you.

The irony is that yoga is all about clueing the body into the mind, and vice versa. In yoga, we use breath and asana and philosophy to join the mind and body together – and heart, as one eloquent yoga teacher put it this weekend. Mind, body, and heart, integrated. We try to bring balance and peace into ourselves, with the desire that in so doing, we’ll see reality clearly, and be able to respond to our lives with wisdom and compassion.

Not grabbing a block for myself, was me not doing yoga “right”. Generally in yoga we don’t like to talk about right ways and wrong ways, but in this case, I think it’s fair to say, I did it wrong. And that’s the one time when my own yoga teacher will quickly offer a correction: when you’re about to hurt yourself. This class was all teachers, a group where it’s assumed you know enough not to leap into a pose and hurt yourself. What’s needed is more practice. We become what we practice. I need to practice choosing safety over the chance to join in.

I need to practice choosing safety over the chance to join in.

corpse-on-everest

On that note, guess what I did? You don’t have to guess, it’s in the title of the post. I joined a 5K run that happens on Inauguration Day, and supports Planned Parenthood. I can walk it, I don’t have to run. But that’s still three entire miles. I can’t walk a single mile. And I don’t have long to train. This was really sort of a dumb thing to do.

I’m not sure how I’ll handle it yet. Part of me wants to train and train, be like Rocky, only without the whole beating-the-shit-out-of-people thing. Overcome! And then on January 20th, show up and walk that three miles. Have Greg take a photo of me at the end. HOLLIE CAN TRIUMPH OVER ANYTHING! Oh and in the meantime, I’ve gotten my rock-hard calves back, and I’ve probably lost thirty pounds, and I’m on my way to curing fibromyalgia for myself, through the sheer magic of just being awesome. I’m so powerful when I put my mind to something!

Another part of me is like, “Well, considering the event fee was $23, and you and Greg both signed up, you could just not walk and consider that a nice $46 donation to Planned Parenthood.” There’s something so soothing in this way of looking at it. HOLLIE CAN TAKE CARE OF HERSELF AND BE PHILANTHROPIC. Unfortunately it also means that there are two race bibs that won’t get used that day, when the whole point is showing up. Solidarity.

I laughed (a little bitterly) about it later. Let’s run a 5K for something! I love events like this, it’s a great idea – for people to whom running a 5K is fun, and, you know, possible. The solidarity is very meaningful. I really, really want to be one of those people. I want the Athleta catalog to arrive in my mailbox without irony.

I saw this opportunity and thought, “Look, I can do something!” When, if I’m honest, was code to myself for, “Hey look, I can join in with a lot of other white people and feel like I’m effecting change! And maybe I’ll turn into the athlete I’ve always wished I could be!” Reflecting on it later, as someone with a body that might actually be harmed by attempting such an event, I could have just sent Planned Parenthood some money, and spent a few of my energy units reading a book to educate myself. What will I choose to do? I’m not sure. But I hope that by articulating this, I can remind myself that I need to stop reflexively “seeing if I can do things”, and work toward being kinder to my body, and wiser with my focus and energy.

10 responses to “After saying, “I can’t march for miles,” I sign up for a 5K. Because: denial.

  1. How about a compromise? Like having Greg take you in a wheelchair? I know that’s a big hurdle for a lot of ill folk but for me, a wheelchair means liberation. Cos you can be there! Supporting Planned Parenthood with money AND numbers! You can totally stick it to the man (monster).

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    • Where does one get a wheelchair? Such a strange question. I really like the idea, but I’m pretty heavy to push for three miles, I’m not sure Greg would want to do that. 🙂 I wish I had a little scooter or something for times like this, but then those are crazy expensive. I think I might try and walk as far as I can, and then maybe go off course and try to help out? I dunno yet. But yeah, I will be there, no matter what. Have to take a stand against The Orange Turdsqueeze, or TOT for short.

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      • More places than you’d think! You can hire them from the hospital, chemist, or accessibility supply stores to get a feel for them. Secondhand is another affordable option, I bought my first chair off Gumtree for less than half the price it would have been in stores. You could probably find some sort of gopher in the same places.

        There is a huge range in quality and features, but for you I think the most important is the distinction between transit and self-propel wheelchairs. I use a self-propel, which might seem counter intuitive as I’m only ever pushed in it, but they have much bigger wheels and therefore are more comfortable. Believe me when I say you don’t want to spend much time in a chair with small wheels. Brakes for the pusher are also important for going down hills etc.

        Honestly pushing someone isn’t as hard as it seems…..I often think I might be too much for my very small friends to push, as I am a Big Person, but everyone seems to manage pretty well. I’d really recommend giving some sort of mobility device a go, if it means that you can do things that would ordinarily make you sick. Save your spoons for the important stuff! Like holding up placards and booing.

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        • I’ll talk to Greg about this. I’m hesitant, but I keep asking myself why. Just a general discomfort with admitting I have this illness? I don’t know…hmmm. It really would be good to have a wheelchair, especially for emergencies. If we had an earthquake here, for instance (there’s a good chance Seattle will experience a very bad one in our lifetime), and we had to walk out, then a wheelchair for me would be almost necessary. I wouldn’t be able to walk more than a few blocks without one.

          I think it’s just really hard to admit that? To think about myself that way. Which I say gently, with compassion for myself. And others who have gone through this.

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          • You deserve compassion as much as anyone else – treat yourself as you would a dear friend. I was thinking the other day about why it is hard for people to accept mobility devices…..is it because we are conditioned to see them as signs of weakness? IDK. It is awful to realise and admit how much an illness affects you. But acceptance is the first step in living well with a chronic illness x

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          • I was thinking about this, too. I imagine being in a wheelchair, and I can feel this tension between the feeling that I’m an imposter somehow, and then the feeling that by using one, I’d be admitting I’m in this much pain. Both things feel scary. I haven’t examined it much beyond that. I think you bring up good points.

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  2. I can’t walk three miles either. Maybe we should do it together?

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  3. Consider that you could volunteer to hand out cups of water or tshirts or be the First Aid Station Dude. Solidarity without having to trek 5k. You could still give them $23.

    I didn’t sign up for our Cause Du Jour relay race (I forget if it’s for Parkinsons or Alzheimers or Meals on Wheels or something else), but when I heard they needed a driver for a van I was all over it. Race, no. Drive, yep. Win.

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