I was thoroughly burrowed in my bed when a familiar ache started creeping up the backs of my thighs. I had spent the day stretching out my contracted muscles, and they were pissed. If I didn’t take something soon, I would be awake in a few hours with pain too excruciating to fall back asleep.
“Babe?” I prompted my husband, Alec, with my best puppy dog eyes. “Will you go get my Ibuprofen out of my purse?”
When he came back with the bottle, he was laughing.
“I never expected the contents of your purse to get so quirky over the years. You have a full tin of mixed nuts, a giant bottle of multivitamins, and a full roll of duct tape.”
Laughing along with him, I added, “Believe me, I don’t want to carry the fucking duct tape around anymore!”
“You can probably take it out now,” he said as he handed me the pills.
“No way. The day I take it out is the day that stupid wheel will fall off. I just know it.”
With that, I swallowed the pills and laid back down, trying not to think about this not-so-new bureaucratic nightmare I found myself in.
My wheelchair broke on the way into work on an early December Tuesday. Alec and I were in a hurry (as we are most mornings), and as he hastily pushed me up the ramp and into the library where I’ve worked for the past twelve years, my chair wouldn’t move.
“What am I stuck on?” I asked aloud and we frantically looked for the cause so we could get moving.
“Oh my god,” I said when I saw it. “My wheel broke off!”
Alec followed my eye line to the front left caster wheel of my chair, now sticking out at an awkward angle. My stomach lurched as if I had seen an ESPN clip of a football player’s leg break. He tipped me backward, rolled me to my desk, and helped me transfer to an office chair as my coworker went searching for an Allen wrench to reattach the rogue wheel. We were able to tighten the screw, and the wheel seemed sturdy. Still, I was nervous the entire day and rolled around as gingerly as I was able, wincing at every little bump I rolled over. When it was still holding steady later that night, I figured the screw had just come loose over the two years I’d been using the chair and that we had indeed fixed it. I relaxed and continued rolling around without incident for the next week.
The following Monday, I was home alone and prepping dinner. As I started to pour a can of evaporated milk into my Crock-pot, a sudden shift slammed me into the counter and I dropped the entire can right into the pot.
Bracing myself on the kitchen counter, I looked down to see the caster wheel at the same awkward angle it had been a week before. Only this time, there wasn’t a soul around to help. I stared dumbly at the wheel for a few seconds, but when it didn’t magically correct itself, I popped myself back into a wheelie and made it to the kitchen table. I carefully transferred to another chair, heart pounding from the effort of the move and fear of falling.
It’s a strange feeling to be completely immobile. I’m so used to being able to move where I want when I want, that I forget my wheelchair is not actually a part of me, and without it, I am totally screwed. For a moment, I allowed the hopelessness in, but then it was time to take action. I knew we had a Ziplock bag full of Allen wrenches in the toolbox in the laundry room and decided to make my way to them. After gingerly lowering myself to the tile floor, I scooted on my butt toward the laundry room doors, lamenting our poor mopping habits.
Mercifully, I was able to reach the tool box from the floor. But no matter how much I tightened the screw, the wheel wouldn’t hold.
The coolness of the tile seeped through my sweats as I considered my options. I could call Alec, but it was just early afternoon, and I knew he couldn’t afford to miss work. I thought about calling my mom, but she was unable to drive at that time. So I took a deep breath and exhausted the final, and worst, option. I called NuMotion, the medical equipment distributor I had gone through to get my wheelchair two years prior. Shitty, staticky hold music became the soundtrack to my afternoon as I was transferred from person to person until I finally landed on someone helpful.
“This happened while you were in it?!” the voice on the other end of the line cried when I told him the situation. “Are you okay?”
He was the first person who had shown genuine concern and promised me that he had flagged my case as top priority. An emergency technician would be at my apartment that very evening to schedule a repair and bring me a loaner chair. I hung up feeling good about the situation and spent the rest of the afternoon Facebooking from the kitchen floor. Dinner was going to be delayed by a few hours, but at least my chair would be getting fixed ASAP.
But when the emergency technician showed up around 8:00 and rolled in the loaner chair, I knew I was in trouble.
“Sorry about this,” he said as he parked the behemoth chair in my living room. “This is the bottom of the barrel.”
Bottom of the barrel was right. The thing was twice the width of my usual chair, with giant leg rests that angled outward instead of downward. The entire time the technician was there, assessing the damage to my chair and asking me questions, I was eying the monstrosity he brought in, panicking at the thought of having to use it in other people’s homes during upcoming holiday parties. I wasn’t even sure it would fit through my wide doorways, let alone narrower frames at our family’s houses.
“How long will it take to get the parts in?” I heard Alec asking, snapping me out of my panic.
“I have to tell you thirty days,” the tech replied, checking off boxes on a clipboard. “But it will probably be a lot sooner than that. Says here you’re a rush order.”
He took down a few more notes of what needed repaired on my chair: both caster wheels, splash guards, brakes. Then he was gone and I was left staring at the loaner from my couch.
“Guess I should see if I fit through the doorways,” I said quietly.
Alec rolled it over to me, and I struggled to transfer into it with its giant leg rests in the way. Alec took them off completely, but then my feet dangled and pulled my hip muscles downward with an all-too-familiar painful tug. So he put them back on. I headed toward the bathroom, struggling to push myself with my arms forced into such a wide span.
The chair fit into our bathroom, but just barely. I had to pull my hand up from the wheel to keep it from getting smashed between the rim and the bathroom cabinet. As I transferred to and from the toilet, the back of my calf caught one of the metal footrests, leaving a deep bruise that would last through Christmas. My hopeful afternoon had turned into a hopeless evening, and I let loose right there, wedged between the cabinet and the doorway, unable to hold back my tears of stress and frustration.
It had been just two weeks since my mom had been on a ventilator in the ICU following three massive seizures. There were moments we weren’t sure she was going to make it, or, if she did, that she wouldn’t be the same woman we had always known. The stress of that trauma had finally started to dissipate now that she was home and recovering. And I couldn’t believe this mobility mess was happening now, right as I was regaining my equilibrium. My wheelchair breaking just became another shitty thing to deal with in the midst of a terrible December.
Alec pulled me out of the bathroom and wrapped me in a hug without asking what was wrong. He knew. He had been by my side every terrifying day in the ICU and understood that this was just a breaking point. Like the stripped screw on my caster wheel, I just couldn’t hold anymore weight.
He helped me to the couch, pushed the loaner chair aside, and began wrapping the broken caster in duct tape. I watched him in silence.
“Okay,” he said when he was done. “The screw is in there, and now it can’t come out.” He shook the small wheel to prove his point.
I eyed the encasing cautiously. I wasn’t so sure, so he hopped in the chair and wheeled around our apartment for a while before getting out and shaking the caster as hard as he could. It didn’t budge.
The next morning, one week after the original break, I rolled into work with my duct taped wheel while Alec tucked the loaner chair away in the library’s break room, just in case. I armed myself with an Allen wrench and the roll of tape in my purse, also just in case. My wheelchair and I could hold it together for a little while longer.
As it turns out, a “rush order” really isn’t that rushed. After Christmas, when I still hadn’t heard any news of the parts coming in, I called NuMotion to get the status of my case.
“Looks like we’re waiting on your doctor to sign the physician’s order and fax it over for insurance.” My stomach clenched in familiar fury.
No, no, no. Not this, I thought desperately. Not again.
When I was a part time wheelchair user, I used a lot of bad chairs. Like the loaner that was given to me, the chairs I used were meant for short term use, like in the case of an injury. These chairs are much cheaper than those made for permanent use, so I would get a new one every couple of years or so. But when I lost the ability to walk completely, my short term chair became a permanent one, and after a few years of use it had a whole slew of issues, including but not limited to: no footrest, missing right armrest, broken and torn left armrest, and no cushion. Sitting in that thing all day had become a kind of Medieval torture. Without a footrest, my legs fell asleep constantly while their weight pulled at my hips. The bar where the armrest should have been left my forearm constantly bruised. And without a cushion, the folding frame dug into the backs of my thighs, creating sciatic nerve pain that left me in tears.
It became painfully (literally) obvious that I needed a permanent chair for my permanent disability. I made an appointment with my doctor so he would write my proof of medical need, and then I was hooked up with NuMotion to begin the process of getting my new chair.
In early April of 2016, a NuMotion technician came to my apartment to fit me for the chair. He took my measurements, let me pick out the features of my new chair (treaded tires, white piping, easy-grip rims). He gushed about the engineers (a group of men in wheelchairs themselves) in Washington who made TiLite chairs. He spoke as though he wished he had the privilege of being a wheelchair user himself. His enthusiasm was contagious. By the time he left, I was so excited for my new chair that I thought my stomach might implode during the 70 day period it would take to manufacture and ship it. I spent afternoons watching testimonial videos on TiLite’s website and cried as wheelchair users described how comfortable they were, how much easier it was to navigate the world. I couldn’t believe that I was going to be like them in just a little over two months.
When the 70 day mark finally came, my chair did not come with it. I was disappointed, but understanding. I could hold on a little longer. And then another 70 days passed. And then another 50. Each day, I was in more pain than the day before. My thoughts turned dark and bitter like old coffee left to burn in the pot. Why couldn’t anything ever be easy? Why was my life so much harder than other people my age? What was the point of any of it? Pain has a way of clouding your brain, manifesting the physical torment as a mental beating. By the end of it all, my psyche was black and blue.
When all was said and done, it would end up being 191 days before I was finally able to transfer out of my decrepit chair for the last time.
So, why did it take so long? Oh, let me count the ways:
May- NuMotion decides that the two initial evaluations I had weren’t enough for their insurance review. They require me to make an appointment with my physician to make sure I have the arm mobility required for a manual wheelchair. I have been using manual wheelchairs for almost a decade by that point.
Early July- My doctor is supposed to fax NuMotion, and their representatives tell me he hasn’t done it. So I call the doctor’s office, and they tell me that NuMotion never sent them anything. It becomes my problem to find out what is actually going on.
Mid July- My doctor finally faxes over the paperwork NuMotion needs, but doesn’t fill it out correctly. It takes two full weeks for him to fax over the correction.
Late August- My order finally goes to insurance review, but the paperwork was missing a “start date”. Rejected.
Early September- My doctor fills out the paperwork again, this time with a start date. It goes back into insurance review.
Mid September- The order is rejected again. My doctor’s “8” looks like it could be a “5”.
Late September- My doctor fixes the “8” and my chair is finally approved. It ships two weeks later, and I finally get it on October 20.
These are touchpoints, but in between, there were angry calls and emails, tears and more frustration than I could handle. Every extra day that I was in pain caused by my old chair, I got a little angrier, until I could taste the bitterness of disappointment on my tongue all the time.
I had to be my own advocate. I had to call insurance companies to go over terms I didn’t understand and get loud with my own doctor’s office. On the days I couldn’t take anymore, I was lucky enough to have a mom in the healthcare field who could call and get loud on my behalf.
“Squeaky wheel gets the grease!” she texted me one of the days we were dealing with NuMotion.
“Yeah, well I’ve got two squeaky wheels!” I had replied.
Throughout the 191 day ordeal, one thought was more pervasive than the rest: What about those among the disabled community who can’t be their own advocate? What about those who don’t have family members who can help them? I had the privileges of energy, an Internet connection, and no language barrier. If I wouldn’t have had these privileges of self-advocacy, I may have never gotten my chair at all. If I wouldn’t have had the ability to diligently call, email, and keep track of all correspondence, my case would have been buried and forgotten. Sadly, this is the case for many disabled people. We’re using old, ineffective medical equipment, because the task of getting new mobility aids is seemingly insurmountable. Living with a chronic illness is draining, and I don’t place an ounce of blame on any disabled person who just doesn’t have anything left to give, including the strength to fight for their medical equipment. And really, why should we have to fight to have our basic needs met in a timely and reasonable manner?
One of the many issues is this: There are over a billion people with disabilities in the world, but we are still fighting to be represented in a diversified workforce. According to the Bureau of Labor Statistics, disabled people are far less likely to be employed in management positions, including those in healthcare and technical operations. Perhaps if insurance review boards and third party medical equipment distributors had a few more disabled people on staff, things would move much more quickly. Employing someone who understands the daily struggle of using dilapidated medical equipment means you’re employing a better advocate for those going through the process. It means that people like me may not have to wait half a year for the dignity of relief and mobility. It means having a knowledgeable voice that can say a loaner wheelchair should be reasonable and comfortable, that repairs should happen quickly.
When the repair department at NuMotion told me that they were waiting on my doctor to sign the physician’s order and fax it over for insurance, I knew I was going to be carrying around that duct tape for a long time. I’d been here before; I recognized that tree.
I hung up with NuMotion and called the doctor’s office, where I was promptly put on hold. I stared down at my duct taped wheel as I left a message with my doctor, pleading with him to sign the paper and fax it over. It was familiar and terrible.
Two months later, my mom was back in the ICU, this time for brain surgery. On a morning I was getting ready to go see her, NuMotion called, and I answered excitedly, thinking that they were finally calling to schedule my repair and it would be one less thing to worry over. Instead, the woman on the other end said they still didn’t have a signature from my doctor. Could I possibly give his office a call and try to get it moving? Again, I did. Again, I had to leave a message.
Hours later, my phone buzzed in my lap and I rushed out of my mom’s hospital room to answer the call from my doctor’s office. The woman I spoke with incredulously told me that NuMotion hadn’t sent them anything. Could I possibly give her the number of the repair department? I did. I never heard back. The duct tape and I would have to hold on for a little while longer.
At the time of this writing, it has been 64 days since the day my wheelchair broke in my kitchen. 64 days since I was told I was a rush order. 64 days of carrying duct tape and an Allen wrench on my person at all times. I still think of those who are left behind, the ones whose squeaky wheels don’t get the grease, whose 64 days turn into 191 days, until the days are innumerable, until they’re forced to give up and relegate themselves to the undignified life of constant discomfort and immobility. And I ask, why should it be this complicated? Why should people in desperate need of medical equipment be denied because of a doctor’s scrawled number? Why, in 2019, are we relying on fax lines to transmit medical documents?
Eventually, my wheelchair will be repaired. I’ll take the duct tape out of my purse and put it back in the junk drawer. I’ll smile as the technician takes the loaner chair out of my apartment. I’ll roll around without bracing myself every time my caster wheel encounters a bump. My immediate problem will be solved.
But in tandem eventuality, that loaner chair will be delivered to someone else’s home. That person will frown as the technician tells them it’s “the bottom of the barrel.” Maybe they’ll actually have to use it. Or maybe, they’ll be lucky enough to have someone in their life who will wrap the brokenness in duct tape, so it can hold for just a little while longer.
Update: Right before this post went live, I called NuMotion to check the status of my case. I was told that the parts had shipped and they scheduled my repair for March 13, making the total time 86 days from break to repair, a full 56 days over the original estimate. But I have to wonder, how much longer would it have taken if I wouldn’t have called? This is what I mean when I talk about the privilege of self-advocacy.