Putting a title on a post before it’s written is like trying to predict the outcome of a game that hasn’t started yet. I prefer to let things play out so the name can reveal itself organically. When I do that, I never feel confined to the parameters of the title and I can go anywhere my imagination takes me.
My first gastroenterologist tried to title my story before it was written, a fairly common practice in the medical field. I might be a realist and a glass half-empty type of gal, but I don’t need my future read by an over-educated, under-experienced physician devoid of bedside manner.
Sometimes—especially the times when you’re sitting on an exam table with your pants off, about to be scoped up your ass by a male doctor who, under different circumstances, might be dating material—sometimes, it’s hard to remember that we have choices, especially when fear is desperately trying to convince us to surrender control to someone more qualified to make the decisions.
I was probably sick with ulcerative colitis for at least a year before I was diagnosed. I didn’t have insurance at the time so I was ignoring symptoms left and right to avoid paying out of my thin pockets. By the time I was admitted to the hospital, I hadn’t slept in weeks due to constant abdominal pain; I was 20 pounds underweight; and my digestive tract was already so clear that drinking two gallons of liquid laxative during the colonoscopy prep didn’t do a damn thing.
To say that night was bad is a gross understatement: It was the worst night of my life. So, when Dr. Kao decided that it was a good time to tell me that I had an incurable form of bowel disease called ulcerative colitis, you can imagine my reaction. The only thing that saved him from getting punched in the face was that I was still heavily sedated from whatever GLORIOUS drugs they had given me during the colonoscopy.
I listened from my hospital bed as he rattled off facts about my body in the most academic and just-deal-with-it-already tone of voice that I’ve ever heard. I would need to be medicated for the rest of my life to prevent flare-ups and I was at increased risk for colon cancer, necessitating regular screenings. As if his inspirational speech wasn’t enough, he finished it off with this statement of hope:
Your life will NEVER be the same.
The sentence made its way through the narcotic fog, into my ears and down my throat straight to my heart where it imploded into a thousand tiny suicidal pieces. I can honestly say it’s the only moment in my life that I have seriously considered killing myself.
Your life will never be the same went round and round in my mind and with each rotation, I heard something different:
Your life will never be worth living again.
Your colon will eventually be removed.
You’re never getting married.
You’ll have to live with a J-Pouch.
You’re never having kids. .
Your ex-boyfriend is madly in love with a new woman already.
You will never be touched again.
You have the most disgusting disease on earth.
You will never be loved again.
If there was ever a time for fear to bully me into silent submission, this was it.
While I was obsessing over the end of my life, Dr. Kao was already well into talking treatment with my mother. I perked up. I already knew my options. Like any good sick person, I had done my due diligence on Google and scared myself silly on self-diagnosis sites. I had already played the UC scenario out and I knew exactly what I was willing to put my body through.
I cut off the doctor and spoke for the first time, “Are you talking about steroids?”
“Yes,” he answered.
“I won’t do it. What are my other options?”
“On a scale of 1 to 10, you’re at about an 8. For someone in your condition, I strongly suggest a round of steroids. It’s relatively—”
“I’ll be fine—I’m young, I don’t drink, I don’t smoke and I know my body can fight this. Is there a milder form of medication you can give me?”
“I can prescribe you a high-powered anti-inflammatory. That’s as mild as it gets.” He paused for a minute, annoyed that I wasn’t taking his recommendation and then continued with a threat, “But if you don’t show improvement in two weeks, we’re going to have no choice but to take more aggressive measures.”
“Fine,” I said, “I’ll be better by then.”
I was told to stay away from pain relievers other than Tylenol, take four Asacol pills four times a day and return in two weeks for a follow-up appointment.
I don’t know if you believe in divine intervention or not but I’m fairly certain that a higher power took over for me that day. I’ve heard that God will do for you what you can’t do for yourself and, sicker than a dog and lying at the foot of despair, there’s no way I could have stood up for myself without supernatural help. I was given a gift of strength and courage.
I believe that being sick does not mean that I have to give up the right to live according to my ethics and values. At the time I was diagnosed, I strongly disagreed with the use of immunosuppressant drugs and was unwilling to subject my body to the ruthless side effects of steroids such as hydrocortisone, prednisone, and Remicade. I had already seen the pain they brought my own mother, who became a guinea pig for all kinds of drugs that “managed” rheumatoid arthritis by suppressing her immune system. She was left virtually defenseless against the common cold and couldn’t hug her own grandchildren for fear of contracting a deadly sniffle or cough. It got to the point where I started crying every time my mother sneezed, because I thought it signaled her death.
I guess you could say that I wasn’t willing to go to any length to fight UC, so I try not to think about what would have happened if my body hadn’t responded to the Asacol—if I had been wrong.
Two weeks later I looked so good that Dr. Kao didn’t recognize me and repeatedly asked my cousin (who lived with me) if I was lying about having no pain and only one or two bowel movements in one day; he could barely fathom that I was the same girl who just 14 days earlier was reporting one or two trips to the bathroom an hour.
That day, I’m pretty sure the Doctor learned a few things that medical school had failed to teach him.
Having a chronic illness is just another kind of long-term relationship—it’s ever changing, always evolving and requires constant work to keep healthy. Just like with people, I have to set boundaries and bottom lines with my disease in order to take care of myself in a way that empowers me to keep going.
I didn’t choose ulcerative colitis, but I can choose how I respond to it. This year, that means the Specific Carbohydrate Diet.
If I had left it up to Dr. Kao, I would have been filed and forgotten under Your Life Will Never Be the Same; but I think somebody more qualified to choose titles should make that decision—somebody like me.
It is true, though, your life will never be the same—because it’s going to be infinitely better.
