The Hope That Holds You Back

During a prolonged medical leave from college, I had to come to terms with the permanence of my disability. But improvement has many faces.

Did you know that it hurts to walk with a cane?

It starts with a burning pain in your upper arm. Your muscles are being used in a way they’ve never been used before, your weight perched precariously at an angle previously unknown to your body. Then your joints start to complain about the somewhat unnatural movement, repetitive, day in and day out. Your other shoulder will start to hurt sometimes, too, now that you’re carrying all of your earthly possessions with your non-cane arm. I developed a neuroma in my foot after limping to the right for five years.

No one warned me about any of this. There were no instructions for use the first time I bought a cane, no strengthening exercises on the label. Not one of the dozens of doctors I saw during my ten-year diagnosis experience mentioned the potential side effects of cane use. I learned all this myself when I was on medical leave from my college for the first time.

You see, the thing about chronic illness is that they call it an “illness”. When I applied to colleges as a senior in high school, I did not lie. I told interviewers that I was “sick”. Which was true. But the implication of “sick” is that one day you will get better. And I believed I would get better.

Maybe one day all the diet and exercise changes would revolutionize the way I lived. Maybe one day they would develop a cure. It was possible, the doctors had told me. Many people who had what I have get better.

Back then, doctors believed that.

I was one of the very, very early diagnoses of Postural Orthostatic Tachycardia Syndrome. I received this diagnosis as a terrified seventeen-year-old, trembling faintly in a sterile office at the Mayo Clinic in Rochester, Minnesota. We’d traveled fifteen hundred miles so I could be seen.

It was the culmination of almost a decade of doctors, medical tests, and abject terror. Before this day, no one had been able to figure out why I was suddenly losing vision. No one knew why I’d get so dizzy that I couldn’t stand up, or why I would lose consciousness when I tried to shower. But an hour after I arrived at Mayo, they knew. They’d been doing research into this particular “illness”.

But even they were inexperienced with it. The prevailing idea back then was that, with appropriate diet and exercise, most patients could go back to having a normal life. When I mentioned this to a specialist a few years ago, that I’d been told that I would eventually just get better, she looked at me in confused horror. “But that’s not how it works,” she said. “There is no cure for POTS.”

I know. I know that now. But when I was seventeen and being courted by elite institutions around the country, I didn’t. I truly believed that if I worked hard enough and dedicated enough time and energy to my recovery, I would come out okay. I dismissed my doctors’ recommendations that I should stay in Florida with my parents, maybe attend community college if I was desperate for higher education. After all, I’d found out in the halls of Mayo Clinic that I was a National Merit Finalist. A few months after I got home, I was accepted to a top-five school.

I would be okay, I reasoned. I was drinking my six to eight liters of water a day. I was eating a high-salt diet. I was doing my regular exercises, even if they made me feel like death warmed over. I was doing everything right. I could go away to college like I’d been dreaming about for almost eighteen awkward, nerdy years. I wouldn’t have to give away the golden opportunity that was sitting in my mailbox.

I ended up going to a school that is known for its academic rigor and intense student culture. It’s a difficult school for even an able-bodied student. I quickly discovered that I was not able-bodied. Going to early-morning classes proved to be problematic, and walking between classes was even more so. I got stranded more than once, too exhausted to finish the six-block walk back to my dorm. I became very familiar with the various cafes throughout campus; I spent quite a bit of my life recovering in them.

It all came to a head near the end of my second semester of school. I was unbelievably tired all the time. I was missing classes, too dizzy and exhausted to physically make it to the classrooms. I’d fall asleep the second I got home, letting my homework fall to the wayside. There were mornings that I’d wake up and just sob in my bed, knowing that I had to get up — and knowing that I couldn’t.

My mental health, never reliable, took a nosedive. I loved the learning and still do, more than almost anything I’ve ever known. But I was beginning to realize that I couldn’t handle the work. Physically and mentally, I was breaking down. My room was a disaster. I was behind in all my classes. I felt like a ghost drifting from place to place, too tired and transparent to interact with those around me. I felt like I would be a ghost in a more literal sense very soon.

I broke down in April of that year. I knew I couldn’t do it anymore. I knew I would quite literally die if I went on like I had been. I was already, in retrospect, fairly close. So I finally reached out, desperate, for help. I called my parents in tears and finally had to admit to them what I’d been hiding for months. I had failed. I hadn’t managed to overcome my illness. I wasn’t strong enough, or dedicated enough, or smart enough, to push my way through the pain and finish out the semester.

My parents were terrified. They’d never heard me like this, and whatever they heard sent them to the brink of panic. My mother flew out immediately, and I will be grateful forever. She advocated for me and helped me limp to the student office, where I applied for a medical leave of absence. We decided that clearly I hadn’t had enough time, enough diet and exercise and water, to improve. That maybe after another year of treatment, I’d be well enough to return.

I was hospitalized. As soon as we could get another appointment, I was taken back to Mayo. The doctors there were politely confused. Why was I there? Hadn’t they already told me the only things I could do?

But there had to be something else. I was desperate for it. I’d been doing everything they told me to do and I still wasn’t better. My vision was still blinking out every time I stood up, and I was still lurching into desks as I tried to make my way out of the classroom. It felt like weights had been tied to my entire body, and they just got heavier and heavier and heavier.

Maybe, it was theorized, I still wasn’t doing enough. I was sent back to Florida. My local doctor and therapist grilled me about my daily habits. Was I drinking water? Eating salt? Minding my nutrition? Exercising every day?

There was another side to the promise of improvement, I was discovering. I had been told, with some optimism, that if I stuck to the regimen I’d been given, I would get better. But I wasn’t getting better. So, those around me reasoned, I must not have been sticking to the regimen. Blame started to seep into my interactions with those around me. I just wasn’t trying hard enough.

If suspicion and exasperation were starting to become regular guests at my appointments, though, they were full-time residents in my own mind. No one blamed me for my failings as much as I did. I wasn’t trying hard enough. Wasn’t good enough. Wasn’t passionate enough. I won’t describe the next two years in detail because they were largely lost to the deluge of depression. It wasn’t a good period in my life.

But even on the most miserable of days, sometimes a thin shaft of sunlight will poke through the clouds. For me, my breakthrough was born from irritation. I had been in a store with my father and had found myself leaning, like I often did. It was like my body subconsciously knew how much of my precious energy was being expended on just remaining standing, so it instinctively sought out physical support everywhere I went. I’d lean on tables, walls — even people, if I knew them well enough. I often didn’t even realize I was doing it.

This time, I was listing towards a store display. This time, the support my body had chosen was on wheels. And this time, I fell flat on my face. In public. I wasn’t badly injured, but I was humiliated and angry with my body once again. Living with that body felt like one betrayal after another, and this had apparently been the final straw.

If I had to lean, I was going to lean on something solid. I was tired of needing help from my family or friends whenever I got up, clutching to their hands like a lifeline as my vision blinked in and out and the world dipped beneath my feet. I asked my parents to buy me a cane.

There was a mental hurdle here, I’ll admit. In my head, for some reason, physical malady was some kind of zero-sum game. Resources had to be conserved for those who needed them most. And canes? Canes were for disabled people. The elderly. You know, people who had real problems. I was just “sick”. I wasn’t disabled. I would get better one day. It felt presumptuous for me to use a cane. Like I was a liar stealing something tangible from the world’s most vulnerable. A pretender to their pain.

Sometimes I wish I could go back in time and shake my teenage self. It was just a damn cane. They sell them en masse at CVS. I wasn’t taking anything from anyone by using one. Canes exist to be helpful to whoever needs them, from the permanently disabled to the temporarily inconvenienced. I fully believe that accessibility devices should be available to anyone who might benefit from them for whatever reason. But that’s me now. Back then, I still had this gnawing feeling inside of me that I was stealing something that I wasn’t entitled to.

It worked, though. It was no cure, obviously, but when I used a cane, I had slightly more energy at the end of the day. I had something safe to lean on when I had to stand for long periods. Best of all, I didn’t need to hold anyone’s hand when I was getting up. I would grip my cane now until my knuckles glowed white. And I could stand up unaided.

Independence, I’ve learned, is addictive. It’s something that I’ve been fighting for my whole life. I was striving for it when I left home the first time despite warnings from my family doctor. I was trying to cling to it when I refused to ask for help. It was the main drive behind getting my first cane. It is still, to this day, one of my primary concerns when it comes to treatment options. I will always do whatever I can to be able to move unencumbered by a dependency on others.

When I was twenty years old, that “whatever” was buying my first wheelchair.

It wasn’t a very good one. Just a low-quality hospital-style manual wheelchair. It was what we could afford. And the first day I took my wheelchair to the mall, I expected to feel that same combination of shame and freedom that I felt while using my cane.

Mostly, it just hurt like the dickens. Learning to use my cane had hurt. I’d ached for weeks while I was building up the appropriate muscles. But the day after I used my wheelchair for the first time, I was in agony. I remember lying in bed with my hands clutched into claws that I couldn’t seem to straighten out. They were frozen into the position I’d used while propelling myself, a sort of rigor mortis I was suffering while still alive enough to feel pain. About five years later, I learned that in addition to POTS, I also had Ehlers-Danlos Syndrome, a connective tissue disorder that was to blame for my near-constant pain and that was probably the culprit in my first wheelchair misadventure.

I eventually learned more about wheelchair use. Google became my best friend, because no one else had any advice for me. I learned that the kind of wheelchair I had wasn’t designed for self-propulsion. I learned that if I wore batting gloves more of the skin would stay on my hands after pushing. I learned to start slow.

That said, my final realization, after weeks of slowly wheeling myself around my apartment complex, was that propelling a manual wheelchair took as much energy as walking. These days, a wheelchair is always my final resort. It is used only when I have someone to push me, an electric alternative, or when I am well on my way to the hospital.

Back to the cane, then. After the agony of the wheelchair, the relatively minor pain associated with my cane seemed negligible. I practiced walking with it every day. Soon, it started to feel like an extension of my own body. Another limb.

I remember sitting in my therapist’s office one day, leaning forward on my cane, and him nodding his head at me in approval. “That’s such a natural position for you. I’ve never seen you look so comfortable.”

“Comfortable” isn’t really a thing that happens when you have POTS, EDS, and a couple other minor maladies I discovered throughout the years, but I was the closest that I’d ever be. After a few months of some of the worst paperwork I’ve ever suffered through, I was approved to go back to school.

My initial feelings were nothing but excitement and joy. I’d made it through! I would be okay! For real, this time. My five-limbed body was finally prepped and ready for the university experience I’d always craved.

Still, the doctors assured me that I could “get better”. Still, I identified as “sick”.

Things would change once I returned to school. Do you know who gets accessibility accommodations at American universities? Is it “sick” kids? No. It’s disabled ones. I hesitantly accepted these accommodations at my doctors’ behest, but the label fit me awkwardly, a coat that belonged to someone else. Again I felt like a fraud, stealing resources from students who needed them more than I did.

That said, things were changing, both externally in my life and internally in my mind. While I’d been on medical leave, I’d made the painful decision to cease treatment. Not the diet and exercise — I still followed that religiously. But the experimental treatments that my parents used to hang their hopes on. The medications and the procedures and the therapies, none of which worked.

I had come to realize that these experiments were making me worse. Even the medications that didn’t actively impede my health were wreaking havoc on my mental state. I was pouring all of my hopes and dreams into the idea of a cure. I’d told myself that I’d live my life once I was cured. I’d go back to school once I was cured. I’d start dating after I was cured. I’d pick up hobbies after I was cured. I’d learn to love myself after I was cured.

What I let go of during medical leave was the hope of a cure. It let me move on with my life and go back to school. But what I hadn’t let go of yet was the hope of recovery. That one day I would just “grow out of it”, like my doctors had posited. I’d learned to stop putting off my life until I was cured, but until I gave up on recovery, I don’t think I could ever fully conceptualize my experiences as an intrinsic disability rather than a temporary illness.

What I learned immediately upon my return to school, however, was that no one around me had those compunctions. People saw the cane. They saw the note in my file. That was enough.

About a week after the beginning of the semester, I ran into a student that I’d been friends with before I left. “Sarah!” he said, stopping dead in the hallway. “Where have you been?”

On leave, I admitted awkwardly, trying to only give the barest of details. As we talked, though, and I nervously tried to steer our conversation back to the research program that we both shared, I realized that his eyes were not on my face. They weren’t just below that, either, an indignity I would’ve preferred to the actual truth. No, his eyes were glued to my cane.

As I brought up more and more subjects with increasing desperation, his research interests, mine, school politics, recent events, his responses started to fade into one or two word replies as he stared at my cane.

Finally, he did what we were both waiting for, and he asked what was wrong with me. To him, at least, I was firmly in the category of disabled. My own feelings had very little to do with it.

I stammered out a reply. I can’t remember what it was. He left.

We didn’t talk again.

Suddenly, the question was everywhere. My invisible illness was now extremely visible. I grew to dread elevator rides because it was almost inevitable. The person next to me would sneak glances, and the air between us would grow heavier and heavier as the elevator climbed from floor to floor. I would count down, waiting for it.

“What’s wrong with your leg?”

“Nothing,” I’d reply sometimes, my smile thin and forced. Sometimes I’d elaborate on that. Sometimes I wouldn’t. There was nothing wrong with my legs that wasn’t also wrong with the rest of me, but explaining that felt like uncovering a wound every time.

“What happened?”

I’d lean my head back against the wall and sigh sometimes, so tired of the most boring and intrusive question on earth. “I was born,” I’d say, referring to the genetic aspects of my problem, and my voice said it was a joke, but my eyes didn’t.

I often closed my eyes.

I eventually got used to strangers asking invasive questions. I even got used to the ones who wouldn’t let me leave until I answered them, following me or blocking my path until I slaked their curiosity.

I joked about it once to a friend when we went out for lunch, and she said, “Wow, I can’t believe people would be so rude!” as we entered the door to the restaurant. The host waiting inside looked at me, looked down, and then asked, “So what did you do to your foot?”

The look on my friend’s face was priceless. I remember laughing until I almost cried.

That’s all you can do sometimes. Once a man working the front desk at a hotel wouldn’t check me in until I told him what had happened to me. “Was it something horrific?” he asked, leaning forward, a gleam in his eyes. I laugh about that story now, about how incredibly weird That One Guy was, but I remember crying about it when I got to my room. Tears are weird like that. They can be happy and sad at the same time.

It took a year or two for me to come to terms with the facts. I had left college “sick”. But upon reentry, I had gained the label of “disabled”. It was a label that was chosen for me, and these days I can acknowledge that it’s an accurate one. But at the time, my brain rebelled against it. Accepting the label of disabled meant giving up “sick”. It meant giving up getting better. And that hurt.

But, like I said, so does using a cane. It hurt like hell until I got used to it. Until I’d trained my muscles to do it properly. Until I learned the tips and tricks that made it more bearable.

The heart is a muscle, too, I suppose. I trained that, too. When friends I used to love stopped answering my calls. When strangers felt entitled to the most terrible moments of my life. When I had to approach my professors, eyes cast downward, at the beginning of each semester and beg them for whatever accommodations they were willing to give. When I received a litany of other diagnoses to go with POTS.

Just as I had to work up to walking with a cane, I had to work up to identifying as disabled. My return to school was a rebirth of sorts, but not a smooth one. I had to relearn the sound of my own footsteps going down the hallway (step, step, thud) and I had to renavigate my place in society. I had to test the boundaries of what I was capable of and how much people would put up with before getting angry. How many missed assignments. Lunches. Dates.

But as long as you’re alive, you move forward. I started reading disability activism. I started learning my rights as a disabled student. I started to reimagine what my life would be, and what kind of people I would be sharing it with.

The day I finally applied for a disabled parking placard, I cried. I cried the first time my friend parked in a disabled space so I wouldn’t have far to walk, too. But those tears, like many others, were a mixture of happy and sad. I had finally given up getting better. For years, I had tried to constrain that hope in my chest, feeling it flap desperately against my ribs, and letting it finally fly away left that space feeling empty.

But for once, it hurt less. And I could fill that empty space up with whatever I wanted.

I’m not going to pretend that everything got better after that. I still struggled in school. I got some severe injuries after dizziness-related falls and was hospitalized several more times after overdoing it. I tried to traverse the LGBT dating scene as a disabled woman and did not always find it welcoming.

I came to know systemic discrimination intimately, and I lost out on academic opportunities due to it. I also lost a lot of friends. A few years later, I even had to take a second medical leave.

I still faint in public sometimes.

But things did get better. I learned to use resources intended to help disabled people and learned to stop feeling bad about doing so. I found new friends who loved me even when I couldn’t perform for them. I accessorized with dozens of multicolored accessibility devices. I started going to movies alone, dinners alone, traveling alone. Independence is still mine as long as there is a cane in my hand.

Nine years after I enrolled, I finally got my degree. I cried, and so did my parents. It was relief more than anything, I think. Relief that I’d gotten the certificate, that it was finally over, but also relief that I’d lived. That I’d made it through. I think it gave us all some faith that I could keep doing so. The fear in the back of all of our minds lessened, just a little bit.

Acceptance, for me, was not the end of my story but the beginning. Not a destination, but a path that I’m still on.

I will walk it with five limbs, and I will be okay.