My story

I was a 28-year-old graduate student living in a small apartment in Connecticut with a spastic kitten named Henry when I first got sick. At first nobody knew what was going on. My digestive system suddenly went out of commission, like an engine seizing up in a car. I was hospitalized for several weeks while the doctors tried to settle on a diagnosis. Some rare virus from my travels in Western China? A ruptured spleen?

Some days I felt so sick I couldn’t watch college basketball on the hospital television—seeing athletes in their prime exerting that much energy was too tiring. Every day had periods like getting held underwater by a wave, unbearable but then okay again. When I woke from sleeping, there was that brief moment of re-remembering my shitty situation: Still in a hospital gown, still can’t eat. Still held under. Alone in a dream that wasn’t a dream.

Eventually they figured out that I had Crohn’s disease, an auto-immune disorder that causes inflammation in the intestines. Or ulcerative colitis. Or both, kind of. Apparently it doesn’t really matter because the treatments are nearly identical. I had never heard of any of it. All I knew was that I was fine and then out of nowhere I wasn’t fine at all. This thing had landed on me from the inside.

At first I made the mistake of thinking that the more people who knew about my condition, the more help I would have. But instead I just had to field all of that concern and contradicting advice. My friend’s mom recommended not eating vegetables for the rest of my life. An old girlfriend said I should absolutely get acupuncture, while in the hospital if necessary. She knew a great woman in New Mexico. Someone else said I should drink only aloe juice. I should start smoking cigarettes. I should fly to South America and see the healer guy. No, only eat vegetables. Get the surgery right away, it worked for someone’s cousin. Yoga cures everything. Wait, no, don’t do acupuncture, it’s nonsense. Peanut butter has the right kind of protein for me. Nothing spicy. Eat anything at all, it really doesn’t matter. Just not lettuce. Don’t eat peanut butter because the oil is always rancid and rancid oil is bad for my gut. No smoking! Do not let them do surgery of any kind. Have I considered getting in better shape? No stress, this condition comes from people who can’t handle stress and so do not stress about anything because it’s only going to make it worse. Sometimes spicy foods can help.

After a few weeks of being sick, I could see that this wasn’t the kind of situation that gets better on its own, like the flu or a broken bone. I had a debilitating disease with no cure. It felt like everything about my life would be different, like a line had been permanently crossed. I knew it wasn’t going to kill me, but it didn’t feel like I was going to live very well either.

I’ve been getting infusions of a drug called Remicade at the infusion center in San Francisco every eight weeks for almost twenty years now. Most of the other people in the infusion center are much sicker than I am. They are getting some form of chemotherapy with medicines that sound like words from a future language. I assume most people are dealing with cancer but I can’t tell what body parts are affected. What I can see is that everyone is fighting. They are fighting with their wigs, with their out-of-season winter hats, with the help of their friends or moms or daughters. Most people are fighting by themselves. They’re in a fight for their lives, while I’m mostly fighting for my quality of life. Still, it feels good to do it together, even if we rarely say a word.

Fortunately, I’ve responded well to the medicine. I haven’t been seriously sick for years. I’m in what my doctor recently called “deep remission,” which, when he said it, felt like having my probation lifted. I’m mostly fine these days.

Eventually though, I’ll be facing illness again in some way. We all will. Unless some other, scarier tragedy strikes first. Sickness isn’t something that makes us special. It’s not something that happens to a few of us. It just looks that way because it doesn’t happen on a schedule, and we don’t like to think about it.

In the meantime, I’m celebrating the good stretches by trying to make sense of the observation that when it matters most—when someone we love needs our support—it seems most of us don’t know what to say. And worse, when we don’t know what to say, we tend to say things that only add to the burden. We are talking through our feet, always on the verge of putting them in our mouths. Flowers offer a worthy alternative. Flowers can mean anything. I’m sorry. Congratulations. Thank you. Feel better. But they all say what really matters: I’m here.

Tucker Nichols