As mentioned in Part 1 of this series of posts, there was a period of time a 12 or years ago when I was fairly sick that contained any number of experiences that were both detrimental and positive. I’ve never written about that time in a way that I’ve shared with anyone else. The only writings I did concerning that period were journal entries, which for the most part were incredibly dark, scary, and not really for public consumption. I’ve avoided contemplating much about that time, particularly in terms of making sense of those days and what I could take away from them that was positive. Thus, the focus of this week’s blog entries.
For me, the years that I was sick break down into three distinct periods: 1.) Learning I was sick, 2.) Coming to grips with it and fighting the good fight, and 3.) Undergoing surgeries and making it alive to lead me to the present. Period No. 2 was the toughest. It was abysmal. Horrific. Life-altering. Painful. One, long, constant struggle to maintain sanity. It was a free-fall into mental states of being I didn’t know existed. It was a time I’d just as soon never relive in any way but have pretty much resigned myself to realizing that there are reasons to do just that.
Not to make myself into some kind of martyr or poster boy or pity case because I’m sincerely not, but coming through this stage was the most taxing experience I’ve personally gone through mentally and physically over a prolonged period of time. Those days affected me greatly, and they affected my family. The fact that I had three small children ages 1, 4, and 7 at that time only complicated matters. The fact that I had just started a new job in which I was expected to write about teaching others to use computers but could barely turn one on myself didn’t lessen the stress of the situation any, either. The fact that my body was changing every day, and not in ways I approved of in any way whatsoever, was the icing on a cake that was in no way appealing.
The thing about being told you’re sick with a disease that isn’t going away and that there isn’t a known cure for is that there really isn’t a period of adjustment you’re entitled to. You just start combatting it right away. If you don’t come out swinging, you just get farther behind. Initially, you’re barraged with so much information that doesn’t make any sense—including details about what you should and shouldn’t do now, what you can and can’t expect, what could and couldn’t happen, etc.—that your head is left swimming in a sea of confusion. Next, you’re filling out multiple prescriptions for medicines that you can’t pronounce and that you don’t understand and that you’re left trying to juggle a schedule for when to take this and when to take that. Then there’s the ordeal of telling people who need to know what’s going on, including your parents, kids, friends, etc., and explaining something that you don’t really understand. I’m certain I managed to bungle each of those tasks.
Honestly, after several examinations, being referred to a specialist, undergoing the indignity that is a colonoscopy, and more, I was beat before I ever started. Finally having it confirmed to me that I had a disease called ulcerative colitis was a relief by comparison. Still, I seemingly spent more time early on trying to remember the disease’s name and learning how to pronounce it than I did shifting through the mountains of new information that came crashing my way. Honestly, I don’t know how people who have no one they can count on to be supportive and knowledgeable by their side deal with situations like this. Several times during hospital stays, I recall doctors and nurses describing procedures and activities to me that I was going to have to carry on by myself once I got home, only they did so while I was in a cozy, drugged-induced state in which every word they spoke effectively sounded like “blah, blah, blah.” I was so naïve early on to everything happening, I was more upset about how all this was going to affect my softball playing for the summer than my health. Moronic. Despite the tailspin I found myself in, I remember feeling fairly optimistic about what was happening. I believed if I took my meds, life would carry on just as it always had.
I was wrong. Within a few days of pouring all this new medicine into my body, side effects started showing up. While shopping for plants at a local store, for example, my arm started going numb, I felt dizzy, and my heart started skipping for no apparent reason. I was alone and seriously wondering if I could drive home. Again, if not for my wife, someone with medical training who actually lived in my house, I wouldn’t have had a clue that these things were somewhat expected to happen. No long after that episode and a few others, the steroids kicked in with force, and they continued to kick in and kick in. To this day, even saying, hearing, or writing the word “steroid” causes a certain amount of panic to go off in my head and body. I’m fairly certain the negative connotations that I’ve attached to the word will never end. A decade or so removed from that time, I still feel tremendous empathy for anyone I know who has to take a steroid for any reason.
Prednisone was the steroid I was saddled with. The dosage was small at first, but as my condition continued to deteriorate and worsen and as it became evident all the meds I was swallowing each day weren’t helping much, if at all, the steroid dosage was increased and increased and increased. According to WebMD, a few side effects that takers of prednisone can potentially look forward to and grapple with include chronic trouble sleeping, increased hunger, nervousness, diabetes, Cushing’s syndrome (the emergence of a physically round or “moon” face, pink and purple stretch marks on skin, etc.), depression, abnormal heart rhythm, redness of skin, muscle weakness, visible water retention, trouble breathing, confusion, mood changes, acne, feeling faint, sensation of spinning or whirling, dizzy, excessive sweating, redness of face and neck, weight gain, numbness and tingling, and not feeling well.
Of those listed above, I experienced all, some more severe than others. At night, for example, I’d sweat buckets in bed, to the point I was toweling off. I only wish I’d been sleeping because other than a few hours a night, I didn’t. That lasted for months and months at a time. Further, sleep loss was a side effect of the other drugs I was taking, too. Elsewhere, although no food looked or sounded good to me, I constantly craved more and more. I could eat five candy bars and feel as if I was on my first bite. Strength-wise, once during a softball game, I was a bat, hit the ball, took off for first base, and fell down twice on the way because my legs gave out. My face “mooned” out so much, I looked like a hot air balloon. My back started looking like a topographical map. My heart routinely played a game of skipping beats, which terrified me at first but became so routine, I started to barely notice it. I was constantly depressed, and seeing in the mirror what I was physically turning into only worsened that fact. My weight went from roughly 180 to 210. One day while golfing with some friends, I crossed paths with a relative whom I hadn’t seen for a while. Upon seeing me, he said, “married life must be agreeing with you because it looks like you’ve been enjoying your wife’s cooking.” At a softball game, a different relative said, “I didn’t know they made lead-off batters so big.” They didn’t know what was going on, and I didn’t feel like explaining.
Worse than all that was the diabetes and mood changes that eventually came along. My diet was already restricted from UC, and trying to follow a diabetic diet was a complete failure. Plus, I was so ignorant and uninformed about diabetes, I’d make pretty significant mistakes that left me feeling horrible. “Hmm, a bunch of grapes should be good for me.” Wrong. My blood sugar would shoot through the roof, my heart would pound, and I’d lobby off another frantic call to my wife asking what the hell was going on. Unfortunately, my experience with diabetes and having to prick a finger throughout the day to draw blood and run tests and give myself insulin shots was only temporary. I’ve great respect for those who live with that disease every day and monitor it successful.
More troublesome than diabetes, however, were the mood swings, specifically the episodes of anger. They were too frequent, too unpredictable, and too damaging. The anger-steroid connection we hear about is true. Uncontrollable, indescribable fits of rage. Little to nothing could set me off. No one was safe from the ensuing wrath, either. My wife took the brunt of many unexplainable and unjustifiable fits. I would just get mad. Really mad. And for no good reason. Whoever was nearest at the time was the proverbial punching bag. Pillow not in the right place on the couch. BAM. Toy left outside. BAM. Dare to ask me where the can opener was. BAM. Many times in mid-rant I would think to myself, “Dude, you’re really f*cking up, here. You’re really out of line. Knock it off, now!” But I couldn’t stop. It was like watching a different person from afar. When I pause this very second and think about myself standing over my son, just a little boy with a scared look on his face and in his eyes at this man looming over him, I get tears in my eyes. When I think about the hours and hours I’d spend alone, isolated in a room or downstairs or in the backyard or anywhere else as to not risk exploding at some unfortunate soul, I get tears in my mind. When I think about the wedge I purposely put between myself and everyone else, I feel numb.
These memories and the sensations they still conjure are the reason I avoid those days and haven’t dealt them with fully. I’ve made plenty of apologies and managed to make reason of why I was this way or that way. I’ve made plenty of attempts to rectify those situations, but it’s impossible to not feel a good deal of lingering responsibility for behaving like a lunatic, especially in the presence of small children. For scaring them. For scaring myself. Impossible. Although my tirades only got verbal, every day I fought deep, strong urges to just break things. Anything. More than anything, I wanted to unleash and destroy a chair, smash a window, punch myself in the face. I’d resisted all that until I couldn’t anymore, and then I’d punch away. Better my face than someone else’s, I’d reason.
By the end of this period, when it was painfully apparent that I wasn’t getting better and probably wasn’t going to no matter what was tried, I was relieved. I wanted off of steroids so badly I really didn’t care anymore what the alternatives were. I’d just deal with them. After one hospital stay when I was hooked up to an IV over a couple of days to take steroids directly in the vein in the hope this would put me into remission, I was convinced it wasn’t going to work. Within hours of going home feeling better physically than I had in months and months, I went right back to feeling shitty. The writing was on the wall. Shortly after coming home from that hospital stay, I went south in a hurry, and my colon was beyond saving. It was also threatening to damage other organs, including ones I couldn’t do without.
The thing about steroids is that once you start taking them, you can’t just stop all the sudden. You have to wean off or you’ll just make the situation worse. So that’s what happened, but with the foresight of knowing that surgeries were in my future. Surgeries that would remove my colon and change how I’d live in the future in many ways but that would also give me some sanity and consistency. For the first time in a long time, I felt optimistic about the future and in somewhat control. It wouldn’t exactly be that easy, of course, but I’d find that out later.
Today, what I feel positive and thankful for about this period of time is I still have my family. For the most part, my girls were too young to now remember any of this. Unfortunately, my son was a bit older, and I’m sure some of those days affected him in some way or another. I have deep and long-lasting guilt about that. I’m thankful I’ve had the chance to apologize for being a lunatic, for being out of control. I’m thankful I kept fighting when I didn’t want to some days. I feel positive that because of those experiences, it takes a hell of lot now to frighten me or intimidate me or scare me. I’m thankful that I’ve taken on some challenges and experiences I’m not sure I would have otherwise. I’m thankful it takes a really strong, menacing presence to make me flinch. I feel fortunate that I believe I’ve seen the worst of myself, and although I didn’t like what I saw, I learned from it. I feel positive that if I hadn’t gone through those dark times and been challenged, I’d not appreciate the sun rising, the sun setting, and everything that transpires in between.
Tomorrow, thoughts on undergoing surgeries and embracing life again.
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