While growing up, I never felt as if I was a part of a team. I was the second of four children. The oldest was a boy and the two youngest were girls who were born only 20 months apart and shared their bedroom. Everyone call them the girls, which made me feel weird since I was a girl, too. I was not included in the girls, and my brother had special privileges because he was a boy. I felt sort of drifted apart from all of them, not fitting in anywhere.
None of my siblings have Crohn’s disease. They all are perfectly healthy individuals ranging in age from 43 to 50. All three have intense careers outside the home and also love physical activity. My brother is a management consultant who travels almost constantly. Last year he flew from his home in the Denver area to Cleveland, Ohio, every week for nine months. Because he’s an independent consultant, his work can, and often does, take him anywhere. He’s also a huge bicyclist, sometimes going on 50- or 100-mile trips. He also climbed Mt. Kilimanjaro last year.
My second youngest sister is a college professor. She works many hours a week, teaching classes, and advising students- she also loves yoga.
My youngest sister is a math teacher who tutors on the side. On top of that, she is working toward her Principal’s certification, which requires she attend a Monday night class and a Saturday class each week for a year. She loves going to the gym daily and has two teenagers.
And then there’s me. I’m a writer, a novelist and essayist. I also help seniors in high school work on their college essays. It’s all work I can do on my own time from my home. I’ve raised two daughters and they are both out of the house now. One is in college, and one is in graduate school. I am able to work around my Crohn’s disease. I can take a nap or not work one day if I’m feeling really awful. I also can reschedule things if necessary.
My siblings can’t make time to nap or change their schedule if necessary. They are too busy, each of them working 10 to 12 hours a day at their careers outside the home. My sister was sick last week with the flu and was out of work the entire time. She still has not fully recouped, but today she’s forcing herself to go to work and to her class after work. She just can’t take another day off; her schedule doesn’t have that kind of flexibility.
I started to wonder, “What if she had Crohn’s?'” Would she be able to maintain her workload and still function? I’ve considered full-time work and each time I consider it I’ve come to the same conclusion: I can’t do it. It saddens me, but it is just the way it is. I’ve managed to cobble a career together that works around Crohn’s.
When people say to me that it is a shame that I have Crohn’s, I tell them I’ve taken one for the team. (My teammates being my brother and my sisters.) I was the “best” person in the family to get it. I don’t work outside the home. Even though it was hard when my girls were younger, I no longer have to worry about taking care of them when I’m sick.
So, after more than 40 years of feeling like I wasn’t on the family team, I’ve finally become one of them.
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