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My Mom's Simple Mantra That Gets Me Through the 'Full-Time Job' of Crohn's Disease

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I was raised on Long Island in a time when the world was safe and the scenery bucolic. When I was in high school, the biggest things we worried about were our grades, getting dates for the prom, and getting caught smoking in the girls’ bathroom — the stuff of “old” movies from a much simpler time. Back then, my mother had a simple mantra about life: “It is what it is.” Now, don’t get me wrong, it annoyed the hell out of me when she would point out that there are just some things in life that are the way they are, whether or not we like it, but her simple mantra eventually became prophetic for my life.

I was diagnosed with the Crohn’s disease when I was 18, in my third week as a freshman in college. It was my first foray into serious illness and, at that time, although I knew I was seriously ill, I thankfully had no idea what that really meant. In hindsight, I now realize it became my first, full-time job and one for which I hold a very lengthy medical resume.  Having a profession and a chronic disease is like having two full-time jobs — one that you can retire from and one that stays with you, forever. After college, where I earned a BS in a dual-major, I worked and went onto graduate school, continued working full-time, earned a Master’s degree and, eventually a doctorate, all while battling the full-time disease, surviving many, many hospitalizations, bowel obstructions, NG tubes, ileostomy surgery and the additional surgeries which followed the original ostomy surgery.

What I learned in those 35 years is that despite vacations from work, holidays with family and friends, and a first marriage that ended in divorce, my chronic disease never really took any time off.  When I called in sick from my profession it was because my “other job” took precedence. The disease waxed and waned and came and went in its often-debilitating intensity, but, in the long run, it never really “took a holiday” as the British say. Like an appendage, it became such a part of who I am and how I function (or don’t function when I am feeling poorly) that I never realized its constant and ever-active presence! Maybe I did realize its ongoing presence and my coping skill was to not allow it to be ever-present in my mind, or maybe I just realized that, no matter how debilitating it was or how frustrated I became, it didn’t really matter, because anger and frustration didn’t help.

What really mattered was my ability to keep moving and resilient to whatever my chronic disease had in store for me. Enter mom’s voice: “Honey, it is what it is.”

mom and her adult daughter sitting at a table
Jeanne and her mom.

Crohn’s disease doesn’t only attack the stomach or intestines, but can attack and damage any portion of the digestive track, from the mouth to the anus.  It can also morph into the rest of the body and often, in a co-morbid manner, affect areas of the body you don’t expect. So, even when the disease is not “active” inside of what is left of my small intestine (I had an permanent ileostomy in 1999) the fatigue, joint pain, muscle aches, headaches and/or side effects from the myriad medications I have taken to treat the debilitating secondary and tertiary symptoms also attack my body, as well as my mental health! But, what I hear running on a loop in the recesses of my brain is my mother’s voice saying, “Honey, it is what it is.” She never said it to lessen what I was going through, but to help me remember not to get too caught up in what I couldn’t change, because that would be futile.

So now, in addition to my trying to find my place in the world as a retired educational professional, I also take time to make peace with, and experience, the co-existence with my remaining full-time job, that of survivor of long-term, chronic disease. I acknowledge its presence in my life, I appreciate what I can’t change, but I also take the time to appreciate that I continue to have the ability to fight an insidious disease so many are lost to each year.

Mom, you might be gone from this world, but your simple phrase still resonates in my life, because you were right all along… sometimes, “It is what it is” and you just have to keep moving.

The Mighty is asking the following: What is the best advice your mom gave you while growing up with a disease, disability or mental illness? Check out our Submit a Story page for more about our submission guidelines.

Originally published: June 3, 2016
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