I Feel Ashamed of My Chronic Illness

It was the second-to-last assault. Jonathan was my best friend at the time, and when he stepped forward to hug me hours after the assault, with no acknowledgement of or apology for his earlier use of force, I felt the ground sink under my feet. Two giant hands seemed to press down on my skull. And as I climbed onto my bus home, I felt nauseous. The tunnel vision closed in. My skull throbbed. It was my first encounter with vertigo as a migraine aura. And it was the beginning of a slow transition into chronic illness.

I was 31 years old.

*             *             *

But I didn’t know what was coming. I went on with my life like everything was normal. I went to dance rehearsals and performed that summer. I took a life planning class. I went to work.

And I started getting migraines more frequently.

I’ve had migraines since I was 12. They began a few months after my father attacked and beat me. But they had always been manageable. Attacks occurred only a few times a year. It hardly impacted my life at all.

Now, after divorcing my abuser and being assaulted by two friends, migraines started happening every week, sometimes multiple times a week.

And then the vertigo returned. I couldn’t sit up in bed without the room spinning. I couldn’t read. Sound made me nauseous. When I stood, I had to reach for a wall to steady myself. I became afraid of going down the stairs, certain I would trip and fall. I missed a week of work.

The fall of 2012 my doctor diagnosed me with BPPV (benign paroxysmal positional vertigo), taught me the Epley maneuver, and sent me home. A few days later, the vertigo went away on its own. I thought the maneuver had done the trick. She’d got the diagnosis right.

But we weren’t even close. It would be three more years before we figured it out.

*             *             *

In the meantime, each spring and fall, the vertigo and migraines became more debilitating and lasted longer. The time I spent trapped in bed, swaying and weaving downstairs to the bathroom only when I had to, stretched from one week to two weeks to three. By the time I started grad school in 2014, I was losing a month of my life twice a year.

If our society were less ableist, less prone to body shaming, less obsessed with health culture, I probably would have been able to admit that the Epley maneuver, along with a rare dose of sumatriptan, weren’t enough. I probably would have faced the fact that I’d been given the wrong diagnosis.

Instead, I pressed on. Health, I believed, was a sign of personal virtue. My six-pack abs proved that I was a badass. I was strong and persistent. And what was perseverance if not the choice to never, ever give up?

I walked to and from the gym, the swimming pool, the supermarket, my job at a local college, and my rented room. The walks became harder. My stride was uneven, less controlled. My balance faltered. I began to feel exhausted, my muscles screaming for me to stop, when I’d jogged for only 10 minutes. Chronic pain entered the picture, first arthritic pain in my spine. Some days, I cried. I had to quit my job at the college.

But still, I told myself all I had to do was power through it. If I just kept a positive mindset and made myself go to work and lift weights and jog and act like everything was normal, I would have my old body back, and everything would be fine. I told myself this over and over, like a mantra.

If I just try hard enough, if I am strong enough, I can make all this go away.

*             *             *

One of the reasons for that approach was my ballet training. Its no pain, no gain philosophy had taught me that the only failure was stopping to rest when my toes were bleeding. The only failure was taking a breather when my thighs quaked from exhaustion. I kept one pair of pointe shoes for a long time. Blood had soaked through the layers of fabric and glue and paper, leaving a rust-colored stain on the peach satin. I was proud of that stain. It meant my body couldn’t beat me.

And this is how we think. The body is a thing, an object, that we can conquer. Control. Discipline. And, when it does not obey us, we can even kill it in defiance, as the heroine does in Million Dollar Baby. As the disability began to bleed from one month into two, my doctor referred me to a physical therapist, and I believed if things kept going this way, maybe, in the end, it would be better to die than to live like this.

*             *             *

But then I had to live like this. And I didn’t want to die.

In the autumn of 2015, I missed over a month of work. I had used up all my sick leave and had to get a doctor’s note for extended medical leave. Chris Morrow, my physical therapist, the only PT in Washington state who is board-certified in neurology, also wrote the required letter permitting me to return to work. That was on October 14, 2015.

He directed my supervisor to lower the lights for me. But this wasn’t possible, or safe, to do in the public library stacks where I did most of my work. He directed my supervisor to give me frequent ten-minute breaks. And although my supervisor suffered from vertigo herself and was eager to accommodate me, my coworker (let’s call her Dee) resented having managed our workload by herself for almost two months. She openly complained that a balance problem wasn’t disabling. I had no business taking so many breaks or so many sick days, she said. She didn’t see what the issue was. I was just lazy and trying to get out of work. So why was everyone indulging me?

My supervisor would have let me take those frequent breaks. But I hadn’t even begun to deconstruct my own ableism. I listened to Dee, and I took her prejudiced nonsense seriously. The end result was that I felt too guilty to take care of myself. I wanted to prove to her that I wasn’t the slacker she accused me of being. I wanted to show her just why I was such a valued employee, for years before she ever came along.

It was my first encounter with an ableism that targeted me. It opened my eyes to the constant pressure everyone with disability faces: the judgment, the pity, the constant assumptions that really, it’s easy to fix if only you tried. And the inhumane belief that your disability is due to character flaws or mental illness, such as anxiety, or poor stress management skills, especially if disability sets in during adulthood. So I fell back on my ballet training. My athlete’s mindset of can-do positivity: Push through the pain. You can beat this! Make it happen. Prove your worth!

To exactly no one’s surprise, the vertigo and migraines worsened. Within three months, I could no longer leave my bed. If I so much as tried to wobble out the front door and into the daylight, the migraine blinded me, clenched my skull in a vise, and ensured that the world swayed and bucked underfoot so that I could no longer walk.

I now had no job at all. I received doctor’s orders, which I forwarded to the library, to cease all work for the foreseeable future if I didn’t want things to become even worse. Chris warned me that if I kept pushing myself, I wasn’t just going to need breaks and sick days. I was going to risk losing my ability to work at all.

And I was only halfway through my master’s program.

*             *             *

I will always think of 2016 as the year of cures.

I tried massage, acupuncture, elimination diets (removing onion, wheat, gluten, meat, dairy, sugar, caffeine, alcohol, citrus, and many other potential migraine triggers and contributors to inflammation). I redoubled my commitment to meditation, Cognitive Behavior Therapy, yoga, breathing exercises, balance exercises, and essential oils. I dramatically increased my intake of blueberries, kale, and fatty fish. People prayed for me. A sister-in-law bought me magnets. Why not? I thought. Why the hell not?

I carefully logged every migraine as well as my symptoms at the end of each day. Soon, I had bar charts and line graphs and months of numbers. I could accurately track whether my migraines were getting worse or better or staying the same.

Massage was soothing. Acupuncture freaked me out. Sticking to an anti-inflammatory diet for several months did nothing but increase my grocery bills. Meditation triggered attacks because sitting still in one position for more than five minutes can lock up my muscles, and tension always brings on an attack. Cognitive Behavior Therapy greatly helped the way I felt about becoming chronically ill, but it changed neither the frequency nor the duration and severity of attacks. Yoga made me nauseous and, more than once, triggered a migraine, especially yoga classes touted as “migraine prevention.”

Breathing and balance exercises, done consistently and under the supervision of my physical therapist, have helped manage my vertigo. But it’s still there, and sometimes it prevents me from working. Essential oils are nice but completely ineffectual. Same for prayers. And the only magnet I’ve encountered that did anything to a migraine was the powerful one in the MRI machine, which stopped a migraine in its tracks.

The truth, the one that few able-bodied people can wrap their heads around, is that chronic means chronic. Disability means disability. Treatments may reduce severity, but they are not cures. Chronic illness operates like a sine wave: some months are worse, and a couple months each year I can jog and picnic outdoors and travel and strap into my motorcycle gear and ride my scooter. But the good months don’t mean I’m getting better, and the bad months don’t mean I’m getting worse.

Regular cardio workouts, balance exercises, regular meals, regular sleep, CBT, and relaxation practices all help. But to be honest, they mostly help me live with this. As my neurologist gently reminded me when I got especially excited over one almost migraine-free month, it is chronic.

There is no cure.

*             *             *

I never realized how deeply ableism runs through our culture until I had to dismantle it within myself. As numerous friendships petered out or faded completely, I had to look more closely at my occasional frustration with my friend, Jana. She’s had cerebral palsy her entire life and relies on a wheelchair. Most people look at her and make all kinds of assumptions, usually negative, about her abilities and intelligence. I know because I have seen it. We worked together for nearly 16 years.

But my ability to see other people’s ableism didn’t mean I was innocent of it myself. I wasn’t. Sure, I knew she was brilliant with her major in English and her minor in mathematics. She has taught and tutored both subjects for decades now at a local community college. She is one of the best educators I have ever known, with her commitment to listening to where students are and then asking open-ended questions that push them to the next level. She has this remarkable ability to make students do most of the work, while ensuring they feel completely safe and supported and cheered on. I have seen her level-up a student’s grasp of a thesis or a short story theme or an essay’s organization with one question: “Okay. Why?” I am the educator I am because of her mentorship.

But I still got frustrated with her limitations. The fact that I always had to go see her, and she couldn’t come to see me, frustrated me. The reality that accessibility had to take precedence over my own convenience and that there would be long stretches of months when she didn’t have the energy or ability to fit in social dates, it annoyed me. I felt like our friendship was one-sided and unfair.

That was bullshit.

I slowly learned, being on the other side now, that none of that is true. People with disabilities are doing the best they can, and that includes self-care. If they can’t hang out for three months, it’s because they can’t. It has nothing to do with you. Once I became pretty much house-bound for over a year, Jana and I began to Skype. We started talking about disability and disability rights, access, and ableist expectations. She taught me how to advocate for myself. Her lifelong experience with navigating ableist systems made it possible for me to complete my M.Ed. The new depth of our friendship, and the new ways I understand her, have taught me above all that I truly never can know another person’s experience until I share it. This applies to all groups and identities.

Short of actually becoming part of a marginalized community, which just isn’t possible for most identities, asking questions and initiating a dialogue with people whose experience differs from your own is the only way, and the one that is a responsibility for every compassionate person.

*             *             *

My life is very different now. But I’m grateful that I can still sometimes see movies in the theater. I was unable to do that for almost two years. I’m grateful that I can sometimes ride a bus or walk down a noisy street or take a day trip and only be out of commission for days afterward, instead of weeks or months. My mood, when I am out, is almost always euphoric. But I know this is possible because I only do these things occasionally. I know this is because I’ve learned to follow Chris’s advice.

It’s because I work from home, cutting out the commute that can induce a migraine with impressive predictability. And because I work from home, I can control lighting, work breaks, lunches, noise. My pay is not what it would have been had I entered the job I went to school for, but I did earn my M.Ed. with the help of Jana and the ADA. And I do work and earn money. Still, I am amazed by how many people don’t want me to, by how many people, Republicans especially, claim to believe in personal accountability and want everyone to earn their own money, but then roll back disability rights that ensure we can work and afford to live.

This blog has been all about the traumatic violence and abuse that contributed to my disability. But it’s time for the next chapter of my story. It’s time to dive deep into what it looks like to pursue my dreams and goals in different ways, ways that are accessible and personalized for my health and abilities. Ways that aren’t necessarily recognized or valued by the larger world, but that’s part of the point. Does something count for less just because a disabled person has to do it differently?

The answer is of course not. But if you need convincing, if you just aren’t quite sure, drop by my blog sometimes. I’ll show you that the biggest triumphs are sometimes the smallest, the most creative, the gentlest. Keep on keeping on, folks. We’re not done yet.

Advertisements

4 thoughts on “I Feel Ashamed of My Chronic Illness

  1. I’m here, listening to your story, learning from you, grateful you’re sharing your complex life experience with us. Your writing is not just enlightening, but also beautiful. As long as you speak, I’ll listen.

  2. By far, you are anything but done. Now entering new territories in which, again, your insight, compassion and empathy shall help others. I, for one, will think more deeply regarding chronic illness. Thank you for bringing us words we need to hear. May your writing, expression, become your biggest advocate for demystifying ableism. You are cherished. 💜

Leave a Reply

Please log in using one of these methods to post your comment:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s