Yesterday, I spent all day in a big city hospital being the first patient there ever to receive a new treatment for Crohn’s disease. I met with my doctor, signed a consent waiver saying that I would not sue the hospital if I reacted badly to the treatment and then went to the infusion lab, where for an hour, an IV of the new medicine dripped slowly through a vein into my system.
For those unfamiliar with the condition, Crohn’s disease an autoimmune disorder that attacks the gastrointestinal tract anywhere from the mouth all the way down through to the colon (in my case, I have it in my throat, my stomach and both my large and small intestines). It also causes rashes, arthritis, fevers, exhaustion, nausea, lack of appetite, anemia, weakness, pain and eye issues.
In two months, I’ll start injecting the medication into my thigh or stomach every eight weeks to try to force my immune system into stopping its attack on itself. As my doctor said when I signed the form, I have to do it because even though the chances are slim that I’ll get better, if I don’t do it, I’ll surely not get better at all. At this point, there is no other option for me.
That’s what my life has become over the last 16 years, when after a year of incredible pain, discomfort and exhaustion had kept me in bed, often unable to care for my then 3 and 6-year-old daughters, I was definitively diagnosed with Crohn’s disease. I know it runs in my family, and right now, my biggest worry is whether I will pass this horrendous disease down to my daughters, who are 22 and 18 — on the cusp of adulthood, in graduate school and college respectively — about to set down careers, roots and plans for their own families. What have I done to them?
I went through infertility treatment to have my girls. They were hard-fought, hard-won pregnancies. They are, and forever will be, the babies I grew inside my body, the little girls I gave up a career for and happily dove into school volunteerism for — the young women I shepherded through adolescence during some very dark times, only to emerge beautiful, happy butterflies on the other side. I have given them, literally, all the best parts of me.
But I may have given them the worst of me too. My gastroenterologist said their chances of getting this disease are 10 times higher than the average person. Ten times higher, I muse to myself in a loop in my head. Ten times.
As much as possible, I try not to go there. I don’t allow myself to think about what it would be like if I actually did this to them. I try not to think about my nephew or niece, either, now 16 and 14 — bright, happy, active teenagers. They’re at risk too. I try not to get riled up when my daughter’s stomach hurts or she has a fever or she’s exhausted. I try not to worry about how pale she might look when I see her for dinner one evening.
Like most parents, I want my children to have what I never had. For me, that’s an advanced degree, an exciting career, more money, the ability to give their children and themselves everything they could desire. I want my daughters to be content as much of the time as possible, to be happy as often as they can be. To laugh; to be in love. I want them to achieve everything they want — which, because they are bright and hardworking, means they are likely to — if only this disease stays away from them.
My daughters are at the prime age for being diagnosed with Crohn’s. If I can get them through their mid-30s without the crushing news, we might be out of the woods. If the stomachache doesn’t materialize into days of mind-crushing pain, if the nausea is from a 12-hour bug, if the fever is from a flu that’s going around — we’ll be OK. Because they can’t not be OK. Everything in me, all of the good parts I put into them, is depending on it.