I have Crohn’s disease. Crohn’s is an autoimmune disorder that wreaks havoc on your gastrointestinal tract. I like to think that Crohn’s is solidly in my past since I have been asymptomatic for over five years now, but once a Crohny, always a Crohny. I spent two years of my life in bed unable to eat, writhing in pain and doped up on myriad medications with endless side effects (pancreatitis, seizure, mood swings). So with the knowledge that it could strike back at any time, as well as the terrible memory of its excruciating pain, I live with a certain amount of fear. And abandon. Because, what if I got sick again tomorrow?
Years before I ever met my husband, when I was so desperate for relief that I seriously considered a colostomy, my doctor urged me to try a groundbreaking new drug called Remicade. At the time, it cost upward of $5000 per treatment, was prepared onsite the morning of the appointment, and was administered by I.V. It was also made of mouse proteins, which I’m sure my vegan husband would have detested. It had been in testing for many years but FDA-approved for only 18 months, so I called the drug company to find out how it affected women of child-bearing age. Did they follow patients for extended periods of time after the treatment? Did the drug interfere with fertility? Did it cause birth defects? The drug company’s answer: “We don’t study that.” Wow, what an impressive way to avoid liability! Of course this led to anxiety about whether I could ever become pregnant, and if so, would my children be born healthy. Thankfully, I answered these questions for myself two years ago to my great relief and satisfaction.
Although I may no longer exhibit physical symptoms, the psychological scars of my tortuous past will take a lifetime to heal. My experience changed me, and it influences my decisions every day including how I parent my child. For example:
- Because food was my enemy for so long, once I could eat again I indulged in every craving I felt. I considered it a blessing that I could eat and so I ate. And ate. And ate. Even today, when I have a craving, I act on it, and G-d help the fool who stands in my way (usually my husband). I am working on craving healthier foods these days, and I am trying to instill good eating habits in my son. I don’t bring candy into the house so when he sees it at the store he still has no idea what it is. He is also vegetarian and I do my best to get him to eat his veggies. But ultimately, I do let him eat what he wants when he wants it, so we’ve gone through many phases where he would only eat one type of food. We’ve cycled through potatoes, tomatoes, chocolate milk, white bread, almonds, and fruit-flavored jellies we call “Scooby Snacks.” As long as he’s eating something I feel content that he’s getting food in his belly, but I know this lack of discipline is going to come back and bite me in the butt….sigh.
- I always thought that stress caused or at the very least aggravated my disease. So for me, “don’t sweat the small stuff” literally means, “don’t worry yourself sick.” When I adopted this mantra, not only did I have to relinquish my spot as America’s Top Drama Queen, I had to dismiss my entourage of drama princesses as well. To some, I may seem unsympathetic. You’re upset because you accidentally dyed your hair the wrong color? I’m so sorry you’re distressed….NOT! Get over it. Move on. Or color it again. Life is too short to fret over that piddly shit all the time. And yet, I fear that I won’t be sensitive to my son’s bumps and bruises, physical or emotional. At his age, spilled milk is a big deal! I need to remind myself that at two his scale of upset differs from a grown adult and warrants a different response.
- It is no surprise I acquired a profound fear of a relapse. But more unexpectedly, I became aware of the fragility of everyone’s lives around me. Everybody gets sick or hurt eventually and it’s just random that I survived my experience. So now I am a bit spontaneous. Not in a crazy, reckless sort of way, but more of a “I’m letting my son skip school to go to the movies with me” kind of way. I am a big believer in creating special moments by doing special things for any reason or no reason whatsoever. Most of the time my husband gets this, but I wonder if my son will appreciate it in the years to come or just think I am nuts.
- My history also makes me somewhat paranoid and obsessive-compulsive about diagnostic tests. When I was pregnant with my son, I took blood tests before and during my pregnancy. Because I digest food differently, I sometimes fail to properly absorb B12 and iron (and who knows what else). Therefore, I checked my blood for every vitamin and mineral I could because I didn’t want to have a deficiency that could lead to an easily preventable birth defect. In this case, I do think my hyper-vigilance was justified.
With my son having just turned two, I can see how my Crohn’s affects my parenting decisions more and more. With the belief that I shouldn’t sweat the small stuff, I seldom pick any battles over his behavior. I indulge his cravings like I do my own and my flair for spontaneity resists discipline and scheduling. So far I’m happy with the way things are turning out….but as I always say, you never know what tomorrow will bring.