Meet David…husband of colitis sufferer Dalia
We were barely married two years, had a new baby, and my mother in law was in town, when a lot turned in to much more. Routines, and life in general, were totally different, which is why at first we blew off the symptoms as nothing more than the results of so much change and exhaustion that came with this wonderful stage of life. We would later discover that the pains, the frequent bathroom trips, and the stomach virus like symptoms were actually Ulcerative Colitis. As one does, we did what we had to do to manage this new life and 12 years later here we are with 3 healthy kids and still playing Russian roulette with this illogical, barely understood, and hard to manage or predict illness.
UC has its way of taking the fun out of things, and its lack of predictability can certainly make regular life interesting. Just as your favorite movie spy always knows his or her way out of a room we have learned never to be too far from a restroom, the perfect public/non-public options for emergencies, and I can see a “situation” coming with some of the more common triggers like sudden temperature changes, a strong coffee, or taking it too far with spicy foods. Hiking of any kind is too anxiety building, the beach is cute, but not if the temperature of the water is too cool, and most movies or TV shows come with a break or two. Even conversations are often interrupted at the most random moments, and our children have had the joy of hanging out with their mother in public restrooms all too often!
As a guy, I find my male ego to be most affected by the powerlessness. Don’t get me wrong, I never would have imagined my wife would have the ability to make a bathroom uninhabitable for 15 to 30 minutes, which is an area in which I always saw myself taking the lead, but I can let that one go (pun intended). What’s really hard, harder than the disappointments of missed moments or events, or things we just don’t even do because she is too afraid to risk it, is not being able to help. I go through my moments once or twice a year when I spend a few hours on google trying to “fix it” with a new diet, another set of foods that may not work, or another theory about anti-anxiety medicine and marijuana (I think we should try the marijuana anyway) but so far, I have not been able to find the fix for an illness that greater minds than mine have lost the battle with. For me, this is hard, because I hate nothing more than a situation I can’t fix.
Faith certainly pays a role in our ability to cope. Where powerlessness starts, the greatest power begins. We often remind ourselves that while we are duty bound (pun intended) to make our efforts, everything else is decided by G-d. If our lot in life, as a couple and as a family, is to live with this, we will and we will make the best of it. Still, I sometimes fear what all these medications will mean for our future, for her health, and for the health of our children. There again, I surrender to my faith, but that’s another part of the ride. There are good times and more challenging moments.
Ultimately, life with a spouse that suffers from UC or any of its nefarious cousins is just that, its life. It would be easy to focus resentments and frustrations toward it, but for what purpose or gain? Sure, it’s played a role in almost every major and minor moment of our lives since joining our family just after the birth of our son. It’s been with us as a dark cloud casting fears during every pregnancy, or discussion of another. It’s impacted choices regarding breastfeeding. It has influenced vacation plans, and ruined others and it’s managed to make a 90 minute movie at least 112 with special sound effects during bathroom breaks, but hey… so what. We won’t let it flush our lives down the toilet.
Chin up, Life’s a gas.
Disclaimer: Nobody suffers more than the person stricken with this illness. This essay is written to highlight the perspective of those living with someone that suffers from Crohn’s or Colitis, but should in no way be misunderstood as a lack of empathy toward our loved one who suffers most. Laughter is healing, so let yourself giggle once or twice, its ok.