The day I realized something wasn’t right with me physically I was in the downstairs of a new three-story house being built in the country outside of Lincoln. I was 29, working as a house painter, and wondering what I was doing with my life and how I could change my position. It was a beautiful spring day, the grass was growing tall and thick throughout the rolling hills outside the window I was looking through, and I could hear the birds singing their hearts out. As with many days, I wanted to be elsewhere.
Although the beauty of that particular day made anything seem possible, it was painfully obvious to me that my career options were extremely limited, or at least they seemed that way. I felt as if I’d literally painted myself into a corner that I couldn’t get out of. My resume had gaping holes in it, it had been many years since I’d done professional work in the field I studied for, and if I had even one ounce of self-confidence at that time it would have been a miracle. I hadn’t actually resigned myself to believing that I’d always be a painter, but I wasn’t exactly enthusiastic about the future, either.
What I do remember actually being grateful for at that time was having a new baby in our home along with two older kids who were wonderful, vibrant, funny, energetic, and exuberant. I had the energy to go home most nights and be able to play with them and take joy in their lives. There were no deadlines looming over my head or worries about what stress I might introduce into my life the coming day. Other than not hitting the ceiling with a roller, there aren’t many expectations of a house painter.
That lack of stress pretty much changed in an instant, though. On that particular afternoon, I felt a sudden and unexpected horrible pain in my stomach accompanied by sweat covering my entire body. I got nauseous like never before and felt the strangest urge that my stomach was going to explode. It was unlike anything I’d ever felt or experienced, and this was coming from someone who had tied more than a few good drunks on in his life and had plenty of experience with feeling crappy. Later, other signs that indicated something spooky was going on started to show up. Blood, dizziness, fevers, extreme urges to rush to the bathroom, and more. Simply put, chaos came crashing through the door uninvited and unwelcome but unwilling to leave.
Up to that point in my life, I had always been physically fit or reasonably so. I was always pretty athletic growing up, and I always had plenty of energy. I didn’t tire easily, and I was always up for playing some kind of game or another. I had played sports literally my whole life, and anytime that I had been hurt or sick previously, I just gutted my way through it. I never once considered something physically would ever alter my way of living or mentality.
Within a few days I discovered the cause of what was making me feeling progressively more rotten. Ulcerative colitis. I’d never heard of it, and when I was told what it was, I still didn’t understand. I repeatedly had my wife explain the highlights of the disease to me, but still it didn’t register. I was told that UC was something I’d have to live with from that day on, but that there was a good chance I could manage the symptoms with medicine. I was told all sorts of things honestly, but I listened with half attention, talking myself into the realization that if I swallowed a few pills it would all go away eventually, the same as a headache. So naïve.
The doctor I was paired with was a G.I. specialist but young. Very young. Seemingly no older than me at the time. Although our age similarities enabled us to correspond very well and comfortably, there was a part of me that wondered if I’d be better off with someone with more experience. “Maybe this guy isn’t getting his diagnosis right,” I thought. Looking back, he was perfect for me, and I couldn’t be more grateful for the patience, comfort, and care he provided. He gave me faith in the medical field and that there were doctors who generally cared. Many were the times he’d call when I was most sick to check on my condition, including several times while he was traveling out of state. Always, his nurse would relate my calls directly to him and get back to me within an very acceptable timeframe with answers. Each time during our frequent face-to-face meetings, he took all the time necessary to explain any question I had and lay out my options, expectations, etc. He was a gift.
A few things stick with me about those initial weeks of learning I had this thing in my body. One, I remember hearing the words “there is no known cause” and “we don’t know why you have this.” That was hard to swallow. I wanted to know what I did wrong or had eaten that I shouldn’t have or gone where I didn’t belong. That wasn’t possible, though. The medical field suspects UC hits people with immune system problems, and it’s possible that genetics factor in. Similar to Crohn’s Disease, UC is a form of IBD (inflammatory bowel disease), and it eventually targets the large intestine in most people who have the disease. Beyond that, what I was left with was “this is what could happen, and this is what we’re going to do to make you feel better.” Back then, I didn’t own a computer, let alone know how to use one, so Googling UC to educate myself wasn’t an option.
The other words that stick out from this time and that had the greatest effect on me were “there is no known cure.” The potential good news I was given was that medicine could control the symptoms and put the disease into remission. I might experience periodic flare-ups, but I’d live a fairly normal life. The potential bad news was that the medication wouldn’t work, I’d never go into remission, and we’d have to explore alternative solutions if the symptoms got out of control. Guess which route my body decided to go?
Today, looking back on those early weeks and months upon learning my life was about to change forever, I realize something huge. I sincerely believe that whatever cosmic force that is at work in this world blesses us with gifts if we’re willing to recognize and accept them. My gift was my wife, an ICU nurse who immediately took charge of acquiring information, stressing to me the importance of doing this or that, and holding my hand through the many appointments. She asked the important questions I wasn’t prepared or educated enough to. More importantly, she was a fantastic mother, and when the days eventually came when I couldn’t make it outside to play with our kids or take them to the park or leave the bathroom long enough to even read them books at night, she did. Especially in those early days, when I was still so oblivious to what was ahead for me, she kept a straight head on her shoulders, was solid as a rock, and took control of making sure I swallowed the scads of pills I took several times a day. She oozed calmness in my presence when my mind was melting. And even when all the side effects of those medicines started kicking in with earnest, she stayed the course of positivity. I love her for all that, but I admire her for that, as well.
More than anything I wish the drugs had worked. They didn’t. But it would be many months and many visits to the doctor and a hospital stay here and there before I had to resign myself to the next step. Those months were by far the worst I’ve experienced personally, and for so many reasons, I’ve long tried to not think about them after the fact. Although I’ve been able to pick select experiences from that time and make sense of them, I’ve never really dwelled very long thinking about the really dark days and what they turned me into and how they caused me to act and behave. I’ve certainly never written about them in any kind of constructive way. That’s something I’ll hopefully do in tomorrow’s entry.
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