I remember the exact day that I knew something was wrong with Sean. It was spring 2013 and Sean and I had gone on a 6 mile run to trail for our upcoming Tough Mudder. We stopped every 2 miles to complete a series of cross training exercises in public parks — push ups, burpies, and squats — before running again. As we neared the end of our route, Sean started to slow down. His hip hurt, he said, and I should keep going. I hesitated, not wanting to leave him behind but knowing that I needed to finish strong to keep my confidence up for the race. I took off toward home, leaving him to stretch on a street corner.
Sean walked the rest of the way home. One month later, we completed the Tough Mudder. Even though he crushed the race itself, he hobbled around for weeks afterward. He worked at a physical therapy clinic and his coworkers were puzzled. It was a sports injury, they thought, but it didn’t seem to be getting any better.
By the time several months had passed, Sean was packing ibuprofen and often doubled over in pain. I frequently woke up in the middle of the night to find him sleeping on the floor, pale, sweating, writhing. The bed hurt his hips and his back, he said. He couldn’t get comfortable. There were a few nights of deep panic at 2 am, moments of considering trips to the emergency room. His primary care doctor didn’t know what was wrong but recommended heat and ice. It was a sports injury for sure, the doctor said, caused by the race. It should get better.
Sean also had bone density tests and he got screened for celiac, which runs in his family, but both tests came back negative. My now father-in-law is a doctor so he decided to give Sean an MRI while we were home for the holidays. A week later he called with news: there was swelling and fusion around the base of Sean’s spine. He thought it could be a condition called anklosing spondilitis. My roommate at the time, who was in physical therapy school, came to me around the same time with a picture from one of her textbooks. She thought it was ankolosing spondilitis, too, she said. She pointed to red areas along the base of the spine, indicating swelling.
Still, Sean didn’t go to a doctor. I read horror stories online, saw the pictures of hunchbacked old men, read symptom list after symptom list. He stood doubled over in pain in his kitchen, and in my kitchen. He could barely walk down the street with me and I vacillated between rage and sadness, constantly wishing that this were happening to me instead. Finally, in a fit of rage one afternoon, I called him from the local CVS where I was buying both of us new toothbrushes. “I’m breaking up with you,” I declared. “If you don’t go see a doctor right now, I’m breaking up with you.”
That first doctor’s appointment was deeply relieving. Somehow his diagnosis had ceased to be scary — now, I just wanted someone more knowledgeable than me to tell me what to do. I was ready. Our doctor was a tiny redhead who looked like she was our age. She specialized in anklosing spondilitis and said she’d rarely seen a more token case than Sean. The autoimmune disease usually presents as a sports injury in men in their early twenties. Often, because that patient population is least likely to see a doctor, these men live in pain for years. In Sean’s case, the fusion of his spine had been caught early so very little damage had been done. However, he needed to keep moving so his spine couldn’t fuse — that was most important, the doctor said. He started taking high dose NSAIDs right away and adjusted his diet (we lived Paleo for a few months, at which time we discovered the below recipe), but neither treatment could touch his pain and the NSAIDs gave him stomach problems. We flew from Boston to Seattle that Christmas and after 6 hours on the plane, Sean could barely walk.
He started humera the next week. It worked almost immediately. Three months later, the man who couldn’t even walk down the street ran a 5K race, coming in 10th overall. Humera comes with risks, yes, but the risks were worth his life. The risks were worth having our hobbies back, him being able to move again. Now he takes the drug every 4 months instead of every 2 weeks. Doctors say they’ve never seen someone respond to treatment so quickly.
We were 23 when Sean was diagnosed with AS and I still feel heavy when I think about those months. I remember Sean doubled over in pain, me screaming at him to please, please get up, angry at his helpless response to the disease and angry at my own response to his pain. Watching a loved one endure a chronic illness feels deeply wounding and immaculately helpless. But when we got married, I looked back on those days again and thought, “We can do this because we did that. We can do anything.”
Sausage Potato Soup
Serves 4. Recipe adapted from 40 Aprons.
- 1 pound Italian sausage
- 1/2 t crushed red pepper flakes
- 3-4 medium yellow potatoes (cut into 1-inch pieces)
- 1 medium onion (diced)
- 2 cloves of garlic, minced
- 4 cups chicken stock
- 1 cup shredded kale
- 1 can coconut milk
- salt and pepper, to taste
Push the Italian sausage out of its casing and cook it over medium heat in soup pan, until there’s no more pink. Remove the sausage from the pan, then put the pan back over the heat and add the onions. Cook for 5 minutes, until translucent, then add the garlic and cook for another 2 minutes.
Poor the chicken broth into the pan, then bring to a boil. Once the mixture is boiling, add the potatoes and let them cook for about 20 minutes, until they’re tender when pricked by a fork. Reduce the heat to medium, then add the coconut milk, kale and crushed red pepper flakes. Cook for 5 more minutes, until everything is heated through and the kale is bright green. Add salt and pepper to taste, and enjoy!