According to the Migraine Research Foundation, 2% of the U.S. population suffers from chronic migraine, a severe disability that dramatically impacts quality of life. For some chronic migraineurs, the condition shifts from episodic to chronic because of long-term medication overuse. For others like myself who are new to migraine treatments, sometimes migraine simply becomes progressive, and treatments that are introduced become less effective over time. The reason for this is poorly understood. In other words, we just don’t know.
But like most suffering people, I feel a compulsion to know. I need to know why, with a clutching hunger in my belly.
Yet I’m split right down the middle. I live as two people. One half of myself tells the other half that I’m just sick. I will soon be well. Soon, I’ll be up and around. Soon, it won’t be chronic anymore.
The other half knows I’m in denial. But this half has problems of its own. It whines about how much I don’t deserve this. I’m a full-time grad student, a part-time writer, a part-time employee. In two months, I was going to begin a teaching internship at a university. I’m a newlywed. A feminist. An independent woman. An amateur bodybuilder. A runner and dancer and spinach-smoothie lover. I had great abs. Just six months ago, I dramatically lowered my cholesterol without medication. I don’t deserve this. I don’t have the time for it.
Implicit in all this self-pity is a set of nasty assumptions about people with invisible disabilities. Chronic migraines, arthritis, chronic heart conditions—other diseases corroding the bones or organs, eroding one’s ability to interact with the world—I have some real biases there.
Maybe even prejudices.
I know that for me, it started with Heidi, an elementary school friend who injured her knee in fifth grade. It lasted for months—so long in fact that her crutches seemed to become an extension of her body. Most of the school started saying that she was faking it just to get special treatment. I had been her staunch defender at first, but as time passed, even I started to doubt her. And that was my first lesson in the public shaming and suspicion of anyone who shifts from able-bodied to disabled.
I think most modern cultures harbor a deep distrust of anyone who illustrates the inherent fragility of the body, the transient nature of health and able-bodiedness. Sure, we all called Christopher Reeve brave, and we admire Michael J. Fox for continuing to work—but there was still that immediate, visceral repulsion to Reeve’s sliced windpipe and the rattle of his ventilator, or Fox’s wild tremor and his uncontrollable, roaming eyes. Then, too, it was easier to forgive Reeve because of his square jaw and fine, Roman nose and the fact that he fell to disability honorably, as an athlete. American culture forgives attractive, athletic movie stars of much.
Less honorable in our culture are the people whose bodies just walk out on them and shut the gate behind. It’s the most treacherous betrayal for the brain or the bones or the heart or the blood to just go bust and shutter our lives, cuff our bodies and put us under house arrest. We loathe these examples because they prove it could happen to anyone with the right genes, the right cluster of environmental triggers.
I’m no different. I used to look at such people–people who suddenly became disabled–with such judgment. Contempt, even. I told myself if they had just consumed less alcohol, exercised more, managed their stress better, treated their anxiety—it would never have happened. Their collapse showed a lack of will power or self-control—rather than a bodily fact. Somehow, they deserved it. Somehow, disability isn’t real. It’s a trick of the mind. A result of poor choices. Able-bodiedness is the only reality. The only normal. I reassured myself that it isn’t a natural state of the aging body or the body with certain genetics. It’s a character problem. A mental block. A failure of the person. Not the body.
When disability runs silent and unseen, without wheelchairs or white canes, when a screen of ribs or a skull cloaks the truth, I put the responsibility all on the person. If only they hadn’t. If only they would just. Then it will all be better.
Yet my own reality has proven these prejudices false. So I split into two minds. If only I had. Soon, I will be better.
Only this morning I recognized it for what it is: Not denial, not truth–but a prayer. Soon, please. Soon. There but for the grace of god, go I.
And even grace doesn’t heal all. Sometimes there is only life and the hours and what we can do with them. Less than we once could, but still more than nothing at all.
2 thoughts on “Facing up to My Disability and My Prejudices”
2015 was the year my body gave up on me, showed me I can’t take my digestive system for granted, forced me again and again to break my word and not show up to meetings and then be awkward while apologizing. But there’s one thing I learned to like about this condition that now is becoming a chronical handicap: the way I feel when an episode is over, done with. The joy I take in the first cup of tea I can drink, the first bite of food, the fact that I’m given another chance to enjoy life, until this thing strikes again. Sure, I sometimes get angry when it happens again, when I see how much I miss out, but once I accepted that this condition was not temporary, I was free to not feel like a failure every time it happened. When I’m sick, I’m sick, and when I’m healthy, I’m healthy. While I learned my limits, I also learned how to say no.
All this to say that I truly understand what you’re going through and the way life changes in front of your eyes. Keep writing about it. You’re not alone.
Thank you so much, Roxana. I had no idea you were going through chronic health struggles, too. It’s amazing how quickly it can happen. I totally identify with the freedom you found in accepting it was here to stay. I just got there–so hopefully I’ll continue to grow the peace and wisdom that I hear in your own story. Wishing you the best health and fullest joy you can have~