Living with the mystery of the unknowing

 

"Life will call on you to confront its uncertain hurdles." Dr. BLR

 

As I sit and type this essay, I’m wearing my Apple AirPods Max, the blue, really cool, and expensive ones, and listening to Andrea Bocelli. I’ve been a fan for many years, particularly of his Italian songs. While I don’t speak Italian, even though I know many curse words and some conversational phrases from my days working at a pizzeria, I’m fascinated that he’s been blind since age 12, plays the piano, and sings beautifully about things he’s probably never seen. 

His story echoes those of people with similar disabilities who never let their disability define who they are or what they can or cannot do. I bring this up because, as someone with a disability, you’d never know it unless I told you. I have been living with a gastrointestinal disease, ulcerative colitis (UC), for approximately 24 years and counting. Doctors don’t know what causes it, and to date, there is no cure. Only those who suffer can truly understand the poor quality of life of someone experiencing this condition. We live knowing that anything can trigger it, and the timeframe, if any, for it to calm down is a mystery. 

Over the years, I’ve had numerous flare-ups, some of which left me hospitalized and requiring blood transfusions, which I had to undergo even though I was concerned about receiving less-than-perfect blood. Once the side effects subsided, I went on with my life until the next episode.

Times were difficult when I had to work. Depending on the assignment, I needed to make sure my supervisors knew my situation and that I needed to be near a restroom. Rushing to relieve myself was only one of the issues I endured. The pain was by far the worst. Imagine your stomach and internal organs inflamed and burning like an inferno. If only I could douse it with ice water. Afterward, your organs knot up for no known reason. The pain is unbearable, and the meds prescribed by your doctor for pain relief only work for a short period before it starts again. If you don’t know, this is how addiction starts. Yes, I was prescribed opioids, and when the pain came back, I popped another pill. Fortunately, I was a very disciplined person and knew my limit. Once I was able to manage the pain, I weaned myself off them. I took Advil periodically, even though it’s not recommended for anyone with UC. These are some of the issues I’ve faced.

When times were good, I sometimes forgot I had this disability until it reared its ugly head again. Then I spiraled down that rabbit hole of despair, a side effect of certain medications my doctor prescribed. They should strongly warn that a significant side effect of certain drugs is suicidal ideation. I’ve been down this dark path on numerous occasions because my mind told me I was either going to have my colon removed and would have to wear an ileostomy bag, or I would get colon cancer. I wasn’t happy with either potential prognosis, which is why my mind wouldn’t let me shut it down. 

I couldn’t tell anyone about these thoughts because they would probably ask me to seek out a mental health professional. However, I am mentally strong and understand that these were just fleeting thoughts I could handle. I sought the help of a psychiatrist to address my sleep issues. Of course, like most doctors who make their money off the number of scripts they write, I was prescribed an antidepressant, Lexapro. It helped, but it destroyed my libido, and that is a story for another day.

After several years of dealing with this while I was working, I eventually retired, and my issues seemed to subside. A flare-up here and there would prompt my doctors to suggest experimental medications, but the extreme pain kept me beholden to whatever they prescribed to stop it, and I was constantly running to the restroom at all times of night and day. It is truly frustrating. 

Now you’re probably wondering why I’m talking about this. During my teaching, I often share my story on this topic. Invariably, a student will approach me and say they, too, have a gastrointestinal issue and that they were surprised I’d be so open about mine. I didn’t realize this affected younger people. I thought it was a disease acquired later in life. A few friends have shared that they have had their colon removed and have been living with an ileostomy bag. They appeared to have adjusted well, but each case is different. I hope my admission will help others who have to experience this unforgivable disease. Maybe one day there will be a cure. Fingers crossed. 

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