Sometime while I was still in high school, my mom began to have trouble breathing. She had never had asthma before; an albuterol inhaler helped for a while. Still, cold season was a nightmare, and later, so was allergy season, and every year seemed to get worse.
After college, I moved back in with my parents. She fought her way through the cold season, dutifully driving 20 miles (and later 40, after being asked to teach at a different campus) to a community college near our town, where she taught as an adjunct.
One night the following spring, she told me she could feel her asthma flaring up again, but also, her feet were numb, horribly. And there was something else still: “Look at these,” she said, and showed me a set of tiny, reddish-purple spots on her belly.
Hours later, I woke up to what I thought at first was the sound of my parents arguing, and walked out to the living room. Dad was trying to convince Mom to let him take her to the hospital. She said she’d just wait until morning and go to the urgent care clinic before class (she’d been hospitalized once before for her condition, received no diagnosis and an $18,000 bill we were still dodging). She looked gray and despondent, where hours before she’d looked flushed, almost serene. I took Dad’s side, and she caved. The following morning, she was transferred from the little community hospital in our neighborhood to the intensive care unit in Boise by helicopter; in fact, it crossed the highway just as I drove home from that morning, having been released from work early.
By the time my father and I caught up with her in ICU, she was under heavy sedation so she wouldn’t fight the ventilator. She also had a tentative diagnosis: some form of vasculitis, most likely Churg-Strauss. That’s an autoimmune disorder that causes blood vessels — often those in the lungs — to become inflamed.
Mom was in an induced coma for three weeks. She told me later she had glimmers of consciousness, almost all of them unbearable — hearing conversations and trying to join, getting weary of hearing the same Neil Diamond CD (which I had bought for her, because she loved him) over and over again. When she woke up, she was relieved, and confused and sad; when she realized she’d missed my brother’s birthday, she burst into tears.
Autoimmune disorders are usually treated with corticosteroids to bring the inflammation down, and they work, but heavy doses cause other problems. One is that they cause a loss of muscle strength. After Mom woke up, after weeks of intravenous prednisone, she’d lost 60 pounds of muscle.
One day right after Mom woke up, Dad got a call from the hospital. Mom had had a nurse dial the phone (she was too weak and uncoordinated) and cried so hard he couldn’t understand what she was saying. Someone, it turned out, had come into her room and asked her to sign a lien on our home, since she didn’t have any health insurance.
We knew a few weeks in the ICU would run upwards of six figures and that my parents would probably have to declare bankruptcy. We didn’t know Mom would be asked to sign her home away, not when she’d just woken up from a three-week coma. Not when she was still too weak to hold a pen.
My mom came home and didn’t set foot in a hospital for four more years. Then she got sick again. And a few months later, again. Then she went to the hospital for the third time in less than a year; after weeks where she showed no improvement, her doctor asked us to decide whether to continue life support. An hour or so later, I went into the hospital room alone, took her hand, and told her she didn’t have to fight anymore.
Now, I write about health care for a living. I volunteer in clinics that serve uninsured people. Again and again I meet people like my mom: people struggling to find full-time work that will provide insurance they can afford, people fighting their insurance companies to get needed care, people whose lives are on the line.
I don’t know what the solution is, but I know I have to be a part of it. Because I can. Because I can still hold a pen. Because I can still fight.
Christen McCurdy is a contributor, Costs of Care essay contest.
This post originally appeared on the Costs of Care Blog. Costs of Care is a 501c3 nonprofit that is transforming American health care delivery by empowering patients and their caregivers to deflate medical bills. Follow us on Twitter @costsofcare.