Senior Issue: My Journey From Colitis to Colgate
Perhaps most consumers of the Maroon-News throughout the previous four years would recognize my name in association with the “What’s Left” column. It has been a sincere pleasure to spread the socialist gospel throughout the campus community (only jesting here). I would like to sincerely thank the Maroon-News editors and staff for the work that they do on Colgate’s campus. I have tremendously appreciated the opportunity to express my political thoughts and opinions, even those which were less than prolific.
Colgate has had a habit of confronting me in ways which are unexpected, infuriating and profound. Throughout my entire undergraduate experience, one of the most provocative and incendiary questions ever directed towards me was the following: “Why don’t you ever open up more about yourself? Why do you close yourself off to other people?”
I would like to take this opportunity, my final submission to the Colgate student newspaper, to publicly confront that query, because I feel (and hope) that perhaps my experience living with an invisible disability might mean something to other Colgate students living with disabilities. After all, the frustration and loneliness which can arise from living with an invisible disability is the simple fact that it is invisible. While writing this piece is indeed something outside of my usual sphere of comfort, I believe that it is important – not necessarily even for me, but for others here on Colgate’s campus.
I was not quite a year old when I was formally diagnosed with severe ulcerative colitis (UC), along with a chronic liver disease, primary sclerosing cholangitis (PSC). UC is a chronic infection of the large intestine and causes innumerable issues throughout the body’s gastrointestinal (GI) system. The question of from where these conditions emerged was never important. What mattered more was the extent to which my childhood could be one as healthy and normal as possible. As a single parent, my mom always worked two or often three jobs to pay the various bills and cover my extra medical expenses. My grandparents took care of me and took me to doctors’ appointments when my mom was at work.
If you are unfamiliar with the consequences of a UC and PSC diagnosis, there are few pleasant things to say. The worst element was the crippling stomach cramps, ones which made my entire body shake and sweat until I reached the bathroom. I regularly wet the bed until age 11 and frequently had embarrassing accidents in school. My diet was a highly restrictive one (not fun for a young boy when he takes high doses of prednisone for 10 years).
Throughout the first 10 years of my life, all prescribed medications, treatments and therapies were attempted and eventually failed; several doctors began pointing out that unless surgical action was taken, my life might be at general risk. Under severe UC, the large intestine becomes inflamed over time until it reaches the point of toxic megacolon, often resulting in a sudden rupture. That could mean a one-way trip to the hospital. At age 11, I underwent a surgical procedure known as a complete colectomy – a removal of my large intestine. It is not an experience I would wish on any human being. From the catheter to the nasogastric tubes to the ileostomy which I wore for two months, I really believe that an entire layer of my life was defined in those 12 hours I spent in the operating room at Cincinnati Children’s Hospital.
I am so happy to say that my life and health are worlds beyond what they once were. In June 2021, I celebrated 10 years without a large intestine. While I continue to take certain medications for continued care and the occasional flare-up, I am beyond grateful for the new life that has been given to me. And the scars on my stomach remind me every day about the privilege of having health insurance, a right which is denied to millions of people in this country. The war for universal healthcare in the United States is one which is personal to me.
I have certainly struggled with the long-term consequences of my own condition. While in college, the most acute of these consequences has certainly been peculiar isolation from the social scene with alcohol being off-limits for me. In a social environment where so many relationships and bonds are formed under the influence of strong drinks, medically-induced abstinence is annoying at best and lonely at worst. These internal social and cultural clashes have forced me to look in the mirror and re-evaluate the terms on which I live my own life: What am I doing to create my own pursuit of happiness? Or am I living my life under the boot of some abstract “them”?
That is my own experience, hardly representative of all Colgate students living with invisible disabilities. To quote Robert F. Kennedy, “There are millions more living in the hidden places whose names and faces are completely unknown.” And I know that there are many who struggle with conditions far more serious than my own.
I am truly indebted to Colgate University for the financial generosity which it has shown to me over these past four years. Without such support, I have no idea where I would have gone after completing high school. Speaking directly to current students with invisible disabilities and those who have yet to become members of the Colgate community: Know that your condition is a damn gift that no one should take away from you. You will struggle, and you will often feel that it is you against the world. And you are not alone. You belong at Colgate, and Colgate belongs to you.
A • May 15, 2022 at 6:10 pm
Thought provoking and beautifully, brutally honest. Admiration comes to mind; although the word seems insufficient somehow.