Tuesday, November 17, 2015

On Being Ashamed of Being Unable to Breathe

I realized this weekend that I've spent over 40 years being ashamed of not being able to breathe.

I'm still processing the implications of that. I'm still trying to unpack the legacy shame handed me; still figuring out how it's going to feel to not be ashamed.

I have asthma. Most days I'm not affected by it, thanks to a modern drug I inhale every morning. But when it does flare, the flares can be severe, and they can be set off by just about everything--exercise, allergies, viruses, some chemicals, random perfumes, cigarette smoke, cold air. When I worked as a chemist I couldn't go down to the basement of our laboratory, where the chemical storeroom was. Something in the air there set off an asthma episode every single time. The basement was also our tornado shelter--this was in Indiana, where there are lots of tornadoes--and eventually my boss found me a carbon-filter gas mask to wear during tornado drills or bad storms.

I was ashamed of the mask.

When I was a child I could swim forever. I rode my bike to swim practice every morning, did the laps, rode home. Rode back when the pool opened and stayed there all day. At summer camp I won a bet by treading water for 45 minutes--I stopped only because it was time for dinner--and I was one of a handful of campers who swam all the way across the lake.

At swim meets I felt like I was drowning. I went off the blocks flat out, as hard and fast as I could. One-lap races weren't as bad--I didn't really need to breathe in one lap. But when I aged into 2-lap races I couldn't do it--couldn't breathe, needed to breathe, gulped for air. Flailed, swam, choked. Lost.

At the end of each and every swim meet my ribs would hurt from the effort it took to force air in and out of my lungs. This is actually end-stage asthma--the muscles between the ribs, the intercostals, can actually tire to the point of giving out. When your ribs hurt it's a very bad sign.

My family laughed at me. Such a terrible athlete. They didn't understand how I could be so bad. Maybe I should try a little harder? I was such a disappointment to them. Embarrassing to watch me, they said.

I've had three separate physicians tell me I was lucky not to have died after a swim meet. Lucky I didn't die in my sleep.

Sometimes I was afraid to go to sleep.

Over and over, my father bought me running shoes. He wanted me to go jogging with him. Sometimes I did. Afterward I wheezed for hours. I was in such bad shape, he said. I needed to go running every day. He really wanted me to go running every day.

I swam; I danced. I was fit. I couldn't breathe.

I hated running. Still do.

Asthma doesn't feel like being out of breath. It feels like a constrictive tightening inside the chest. Stiffening lungs send up mucus; I coughed and choked. When I played soccer for my house in college, we used to call time out so I could vomit on the field. Then I'd keep going. I wanted to be capable. Also I had no idea what was really wrong.

A sudden cold snap, a foxhunt on my green Thoroughbred mare. I felt panicked even though she was behaving well. Suddenly--too late--I realized I couldn't breathe. Couldn't talk to call for help--could no longer move air past my vocal cords.. I blacked out, toppled from the saddle. It took fifteen minutes for me to regain consciousness. Cell phones hadn't been invented yet and I was three miles from the nearest road. Members of the hunt helped me back onto my horse, walked me out to the closest trailer, took my horse back to her barn. I assured them I was fine. Fine.

So ashamed.

The blackout, and the six months of severe episodes that followed it, finally brought a diagnosis. I have asthma.

I'm always picked last in gym. I can't run. I'm not fast. I'm not coordinated. I can't catch a ball (nearsighted with no depth perception; I get glasses at age 17). I can't breathe through my nose at all (broken nose, sometime in early childhood, circumstances unknown, discovered and surgically corrected when I'm 19.) I'm an abuse survivor with a gift for dissociation, and I dissociate from all of it. The asthma doesn't feel as shaming when I ignore it.

I ignored it as much as I could.

When I started eventing my asthma flared during cross-country. I discussed it with my doctor, and for awhile had four different medicines that I took in the days leading up to a competition. I also had oral prednisone, for times when nothing else would work, only sometimes that wouldn't work either. I pulled out of an event one year in cross-country warm up, and waited for my coach, an Olympic athlete, to berate me. Unfit disappointing embarrassment to all.

She didn't berate me. I found her matter-of-fact sympathy harder to bear than the insults I expected.

Usually, if I had any trouble on course, I kicked on instead of pulling up. Several times I crossed the finish line in a state of near collapse. It made my family--not my birth family, my created family--angry. Why was a ribbon more important than my health?

I wasn't concerned about the ribbon. I was avoiding the shame. Power through, prove that I might not be such a disappointment after all. I would wheeze for the next month for letting a flare get out of hand--but at least I wasn't a weakling.

My husband has asthma. I've never been ashamed of him.
I'm not ashamed of my eyeglasses, either.

Two days ago I ran cross-country at 8:16 am. It was 27 degrees. I'd already had to use a rescue inhaler the night before, in the hotel, for reasons unknown. I could see trouble ahead. I dreaded failure. I hated, hated, hated, telling my coach I could see trouble ahead.

Lately I've been quite fit, thanks to my yoga practice. The last several times I've run cross-country, in reasonable weather, I've been delighted by how little I had to think about my breathing. Somewhere on course I'd realize I was breathing just fine, and I'd laugh, and it was great. But Sunday was so cold, and cold air usually shocks my lungs.

I walked the course in predawn shadows, fast over hilly ground, trying to push my lungs a little, and they were fine. I took my rescue inhaler ahead of time. I warmed up well--no coughing. Over the first fence--second--third--small tussle with the mare down the hill to the fourth, regarding who was in control of our ship--won--fine jump. Then the gallop to the fifth jump, a combination--and the sharpness in my chest, the constriction. Suddenly my concentration is all on breathing--I have to think about breathing in order to breathe. I'm not as forceful as I should be over fence 5A. I sit up and make 5B work out--but I'm less than a third of the way through the course and already riding less well. I can't do this to my mare. I pull up, one hand in the air, signalling to the fence judge that I'm retiring.

My coach walks over to me (it's a different coach). I wait for her to be ashamed.

She isn't.

And suddenly I understand that I shouldn't be, either. It's a new feeling. It leaves me shaky, not just from trying to breathe. I ride my mare back to her stall. My daughter strips off the mare's tack and takes the studs out of her shoes while I take off my safety vests and find my inhaler. Then my daughter walks my horse dry because I can't do it. I can't breathe well enough to walk at a normal pace. What on earth made me think I could have finished cross-country? I wouldn't have finished. I'd have risked blacking out again. Hurting myself, hurting my horse.

I can't help having asthma. I never could.

My current lack of shame makes me feel oddly vulnerable. I don't know what it means yet to say, "I can't do that. I can't breathe," and have someone say, "Don't worry. Try again once you can." I suppose I'll find out.


  1. This. 100% this. I run. I ride. I push myself hard. I have asthma, and I'm the first and only one to berate myself for it. To try to "push through it."

    It's embarrassing to be a fit almost-30 who can normally run mile on mile, and have to pull up a half mile into a run because I can't breathe. On top of that it scares me. If I can't stay this active, will I lose my ability? Will my disease leave me stuck indoors living a nightmare? Maybe I should just push through now and enjoy the fact that I'm able today.

    It's not right, maybe. But it's where my head goes. Asthma doesn't just steal your breath, it steals your strength and confidence.

  2. This post makes me angry. Angry that you were an adult before you had a diagnosis. Angry that you were being punished, and punished twice, for something that was beyond your control. Angry that you were made to feel ashamed. But you persevered and you're putting the shame behind you. You fight the good fight.

    C in DC


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