Day 83: I'm Not As Old As I Feel

Ok, the alumni basketball game I played in today at Ashland-Greenwood High School was fun. It's always great to see people you grew up with or watched grow up and check in and see how their lives are going. And it's definitely always good to play basketball. But there comes a point when you need to know your limitations and stick with your own. And by stick with your own I mean people your own age.

I have no business these days playing basketball against kids 20 or 25 years younger than me. Lord knows I may have decades of life experience on these pups, but life experience doesn't count for much when you're dragging tail up and down the court chasing the pups. The worse thing in the world is having a new puppy who bolts out the door and down the street, causing you to chase after him in desperation. That's what today felt like. Well, to be more accurate, that's what I feel like right now. I felt pretty good during the actual games, but it's always the aftermath that gets you. Right now, the aftermath is tearing the hell out of my legs, toes, shoulders, neck, and for some reason I still can't figure out, my butt.

I must have taken a tumble at some point while I was trying not to make a fool of myself. I guess old age is keeping me from remembering exactly when it occurred. In any case, it's pretty pathetic and humbling that the worse thing that hurts on me is my butt. What have I become? What does this say about me. Still, as sore as I am, and as bad as my butt may hurt, I'm pretty sure I'll be doing it all over again next year. Knowing my limitations isn't my strong suit. I'm not sure if that's a good or bad thing.  

Day 82: Reliving The Past With A Purpose, Part 5

This is the last of a series of five posts I set out to write concerning a period of time roughly 12 or so years ago when I was diagnosed with ulcerative colitis and what ensued after. I’ve never written about that time in a way that I’ve shared with anyone. Further, I’ve avoided for the most part thinking about that time or making sense of it—for numerous reasons, most of them being what I considered negative. Recently, however, I decided it was time to revisit those days and that time and try and find aspects I can take away that positively influenced me and provided lessons I might apply today.

I’m not so sure reliving the past is always such a good thing. I firmly believe some things should just be left alone, withering in the dust, and buried by time. Some things, though, need re-examined and made sense of. Some things linger on and influence our daily lives without us often even realizing it. I know plenty of people who have lived through some traumatic, life-altering event or another. Some dealt with event constructively and responsibly so they could move on with peace. Others choose to ignore the past, place blame where it may or may not belong, and allow the continue influence of that event to rear its head randomly whenever it decides to make an appearance. I’m not making a judgment about which route is best to take. I fully understand that some events are just too painful or embarrassing or hurtful or unpredictable to stare down again. I’ve done that for years. I don’t want to be that guy anymore. I don’t want to be someone who can’t look at the past and learn from it. Being that guy didn’t buy me anything but self-loathing, misguided and false notions, and a lot of uncertainty.  

I’m glad I’ve looked back on being sick, glad I revisited those days. Being sick, thankfully, wasn’t the end of the world for me, but the thing is, it could have been. It’s important to realize that. For more than a decade I’ve tended to look back on that period with mostly anger. I’ve tended to make excuses for why I may have behaved this way or that. Although I don’t feel as if I took a “why me” mentality, because I know anyone is up for grabs where life’s whimsy is concerned, I do feel I tended to gloss over some important aspects, the primarily one being that something positive can come from something negative. If anything, I’ve felt for years that I was cheated out of answers, and I was angry about it. I didn’t know why I was chosen to be saddled with this disease. I didn’t know what to expect. I didn’t know from one day to another what was going to happen, when it was going to end, how I would deal with it, or if I wanted to even continue. I still don’t have answers to most of the questions, but I’m learning that it probably isn’t important that I do.

What is important is accepting that those experiences occurred and taking away what I can and progressing for the positive. What’s important is what I do today, right now, this second. Truly, that’s the greatest lesson I could have learned. Why did I get ulcerative colitis? Because I did, that’s why. Why did it run so rampant? Because it did, that’s all. Why am I still alive? Because I am. That’s the real truth. I’m still alive, and that’s my real responsibility now, not feeling bitterness or a sense of loss. My identity and purpose isn’t being someone who had this “terrible” thing happen to him. My purpose is being someone who had something happen to him that might not have been pleasant but also got the opportunity to have things continue to happen to him, good and bad.

I’m a big believer in the Wheel of Fortune and Boethius and that no one is immune from having both positive and negative things occur at any given time. One day the wheel takes you on a ride all the way to the top and you can see for miles and the view is splendid and the people admire your position and anything looks possible. The next day the wheel takes you to the bottom and the view is restricted and lacking light and the people are stepping over you and keeping you down and making it back to the surface seems impossible. The secret is to not lament or congratulate your given position but accept that fortune will grant you what she wishes when she wishes, and although you can control and manipulate and shape a great many things, you can’t control them all. Don’t bemoan the fact that fortune’s not looking so favorably on you today. Don’t boast or brag that fortune has chosen to now favor you. Just accept each experience as something that you can learn from with the same approach.

That’s what I hope I’ve learned from these posts, anyway. I’m still alive. I still have my family. I have a daughter who I didn’t have back then. I get to watch them grow and succeed and fail and love and lose and sink and swim. I still have my friends. I still have my senses. I still have the ability to reason and learn and imagine and create. I still have the energy to rise and participate. I can give. I can spread compassion. I can encourage and prop up. I have all these abilities, and I’m starting to believe that being sick and the experiences related to that has allowed me to only fortify that potential and those abilities.

Today, having been sick and gone through surgeries and living with a body that’s been transformed means I sleep less than I used to and given up some foods I really loved and don’t have the stamina or reservoir of energy I once did and experience some discomfort and annoyances that I didn’t deal with before. But haven been sick and everything that implies has today made me more engaged, mentally stronger, more passionate, more aware, more alert, and I hope more enlightened. How could I not be thankful or feel positive about that?

Day 81: Reliving The Past With A Purpose, Part 4

This is Part 4 in a series of five posts I’ve set out to write concerning a period of time roughly 12 or so years ago when I was diagnosed with ulcerative colitis and what ensued after. I’ve never written about that time in a way that I’ve shared with anyone. Further, I’ve avoided for the most part thinking on that time or making sense of it—for numerous reasons, most of them being what I considered negative. Recently, however, I decided it was time to rethink those days and that time and try and find aspects I can take away that positively influenced me and provided lessons I might apply today.

Although I was listening pretty intently to the words Dr.Alexander “The King” Kingsley was speaking to me during our pre-surgery meeting—including his declaration that “anything can go wrong in a surgery, and there’s always a chance . . .”—I was more or less fixated on one particular thing he uttered: “There is a slight chance something might occur and you’ll be left impotent.” WHOOOOO, buddy! Say that part, again! Pretty much immediately, the thought ran through my head, “Jeesh, haven’t I’ve been through enough.” But I kept my mouth closed and my concerns to myself and kept listening.

The King was pretty cocky, but I liked that about him. Most surgeons are, I was told. They have to be. The King oozed confidence, and he left me reassured that I was making the right decision by having these surgeries. They would involve removing my by now very diseased colon and essentially rearrange my small intestine so that it would do the work that my large intestine had always done previously. More than the King’s warning of possible impotency, what I heard him say was I could expect to return to living a mostly normal life once this was over, although the transition wasn’t going to be easy.

Knowing what I know now, he was right. The post-surgery transition was pretty brutal, but back then I was so stoked at the prospect of leaving steroids behind and never having to deal with another day of UC, I was ready for everything. I was getting sicker by the day, and lots of experiments with medicines and a stay in the hospital to push steroids directly in my veins via IV hadn’t worked. About the only positive experience during this time was encountering my roommate in the hospital, a diabetic who literally wandered out of the building at one point and headed to the nearby gas station for a bag of Cheetos and Mt. Dew.

My expectations of surgery were all centered on the notion that everything would be fixed, I’d go on living, and despite some changes in diet and some annoyances here and there, I’d be good as new. The surgeries the King would perform were two-fold. The first happened over Memorial Day weekend. The second happened about three months later. Here are some of the gruesome details for those interested as told on the King’s Web site:

Surgery is indicated for patients who have life-threatening complications of inflammatory bowel diseases, such as massive bleeding, perforation, or infection. It may also be necessary for those who have the chronic form of the disease, which fails medical therapy. It is important that all reasonable medical therapy has been attempted prior to considering surgical intervention.

Historically, the standard operation for ulcerative colitis has been removal of the entire colon, rectum, and anus. This operation is called a Total Proctocolectomy. It cures the disease and removes all risk of developing cancer in the colon or rectum.

Another choice is Restorative Proctocolectomy with Ileoanal Reservoir. This procedure removes all of the colon and rectum, but preserves the anal canal. The rectum is replaced with small bowel, which is refashioned to form a small pouch.

I chose the latter route, Ileoanal Reservoir, or what most people in the trade call a J-pouch. The thought of living the rest of my life with a colostomy was in no way appealing, and I was prepared to do pretty much anything to avoid that. Still am. In hindsight, I made a good decision.

Following that first surgery, I was in the hospital five or six days. My mind is fuzzy to that time thanks to a steady stream of morphine, but it was difficult. I had seven or eight tubes coming out of all sorts of places. Nothing to eat or drink the first three days. No water, no brushing the teeth, no shower, nothing. I had a nice incision over a foot long right down the front of my stomach and a lot of staples holding things together. A lot of sleepless nights. A lot of discomfort. I couldn’t see my kids or wife as much as I wanted. I spent a lot of time alone. A lot of time wondering what I had gotten myself into. My insides hurt like hell. Once I did start eating again, my body had to completely relearn what to do. Further, in another three months, I had to do this again so the King could finish what he’d started. Over those three months everything had to heal and settle in first.

The first few weeks home sucked. I hurt, and I couldn’t lift anything, including our daughter who was about two and full of life. I couldn’t play with the other kids, and I was always exhausted. I couldn’t pitch in around the house, and although I was endlessly grateful for my parents and neighbors for helping mow the lawn and doing this and that, I felt horrible for not being able to help. Worse, eating again and discovering what and would not upset me was problematic. Nothing made sense. Things that were supposed to be good left me feeling horrible. Other food made me want to retch. I had loads of nightmares at night, and the staples kept me from standing up straight, to the point I was freaking out.

Still, there were bright spots. I was out of the steroid fog, and I could see clearly again. Within days I realized some of the damage that my episodes of steroid anger had done and started making amends. Elsewhere, there were lots of well-wishes from friends both after the surgery and once I got home. My friend Clark stayed with us a few days, and it helped take my mind off of all these changes taking place. What a godsend.

Slowly the weeks passed, and although it would take a while before I would fully get my stamina back (I still couldn’t finish nine holes of golf by late summer with my friend Chris, for example), I was ready for the second surgery. In some ways it was worse than the first. I hated my initial stay in the hospital so much, it made the second almost unbearable. My mood showed it. I hated the way things smelled. I hated the bed. I hated the sheets. I hated the noise and constant interruptions and nurses trying to find a good vein to use at 1 a.m. and so on. But I was ecstatic to get this all behind me. After that five-day stay in late August, I was home again and thrilled. Now, I could function as a normal human being again, albeit with a rejiggered digestive system that would need retrained.

That retraining didn’t prove so easy. There was extreme pain that I never expected, and it was constant, day in and day out. There was an abscess that was so painful, I thought about sticking my finger in a light socket just to take the edge off. Worse, there were setbacks. In January, I got sick again and couldn’t stay hydrated. I was scheduled to take a trip to Vegas for work, which I somehow managed to make, but once there, I barely left the hotel room for five days. When I got home, I went south in a hurry. Over two days, I went to the bathroom more than 60 times each day. My weight plummeted, and I was scheduled to head back to the hospital for more steroids.

“F*ck!!” I thought to myself. “I was supposed to be done with that sh*t.” I was irate, void of any faith in anything, and really starting to lose it. Mentally, I was giving up. I knew it, but I didn’t care. I was tired of dealing with this. I was defeated. The night before I was supposed to head to the hospital, everything crashed. My wife had taken the kids out for a deserved break from the insanity. As I did often back then, I got in the bathtub to try and calm down and hold it together. Only that night I couldn’t physically get out. I kept trying to lift myself up but couldn’t. My heart was racing like the wind. I felt like I was passing out. I was legitimately worried I was going to die in that bathtub alone, and I wasn’t having that. It took about 20 minutes or so, but I made it out and called my wife. We headed right to the ER. When we got there, I weighed about 135 pounds. I didn’t recognize my face in the mirror. I knew things were bad when my dad walked into the ER room, took one look at me, and his face immediately flashed an expression of worry I’d never seen before. My dad is bad ass and old school and tough as hell. Seeing his worry made me worry.

I gutted it out, though, and held on. No way was I going to leave my wife alone with three kids. No way was I not going to see them grow up. “Pump the damn steroids in my arm if you have to,” I remember resigning myself to. I’m glad they did. After that setback, I’ve never come close to those levels again (cross fingers) in the years since. A few more days in the hospital was a small price to pay for getting many years of relatively good health back in return. Each year following those surgeries has gotten progressively easier and better. My daily life still differs from most peoples in any number of ways, but I don’t think about it much now unless things get really uncomfortable or painful. It’s just the routine. It’s just the way it is. It’s just become normal. Besides, any inconveniences and limitations I have are pretty insignificant considering the alternative of being dead. Additionally, I think you learn early on that there’s always someone who has it worse, including the small children I’d hear or read about who also had UC, who were also taking steroids, and who had a hell of a lot longer to live with this thing than I would. Count your blessings, big boy. Count your blessings.  

Today, when I think about those times, I have a few long-lasting images that come to mind. One is pulling myself out of that bathtub and taking a good, long look at my face in the mirror. That face looking back spooked me. Literally. I never want to see it again. When I’m staring down something today that puts some doubt in my mind as to whether I can overcome it or even tackle it, I think of that face. As I mentioned previously, I don’t get scared about much anymore where harm to person is concerned. I may still be among the best worriers who ever lived, but I don’t get scared. The other image I have is of my head lying in my wife’s lap while she drove us to the hospital. I couldn’t hold it up, and I was a little worried we weren’t going to make it in time. I wanted comfort and contact. I remember her hand on my hand and thinking this isn’t so bad. I’ve seen her ability to comfort many, many people over the years, and I’m so thankful she was there at that time and did the same for me. Peace of mind. You can’t put a price on that.

Tomorrow, life today and what’s positive about it.  

  

Day 80: Reliving The Past With A Purpose, Part 3

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.

Day 79: Reliving The Past With A Purpose, Part 2

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. 

Day 78: Reliving The Past With A Purpose, Part 1

There was a period of time that stretched about 20 months long or so back roughly 12 or 13 years when the prospect of no longer being alive seemed a distinct possibility. There were a few days during that stretch when I wondered if I would be alive much longer, but there were a whole lot more days when I wasn’t so sure I even wanted to be. If not for having children to watch grow, help raise, and motivate me to keep ticking along, I’m not really sure there wouldn’t have come that one day when I would have stopped wondering and just given in to those feelings. And by no means is that an exaggeration or pity play. It’s just the reality of the situation.

All those years ago during that period of time, I got fairly sick, didn’t have a clue why, couldn’t relate in the least to what was happening, and didn’t approach what was happening and changing me with any realm of the proper knowledge or the appropriate mindset. Worse, the possible outlook as it was presented to me wasn’t one that was appealing in anyway at all. If not for a wife with scads of medical schooling, practical experience, invaluable knowledge, and endless patience and strength, it’s hard to imagine I would have made it through.

For one reason or another, I was reminded of this period about a week or so ago during a conversation I had with a lifelong, dear friend. I hadn’t really stopped to think about that period of time in many, many years with any real depth or true examination. I don’t like thinking about those days. Other than with my wife, I’ve never spent much time talking about them. For better or worse, in fact, my mentality has been to pretty much act as if nothing ever happened, avoid the subject, and with any luck never think about it again. And if not for a few medical conditions that stem from being sick back then that still linger on today, I mostly likely wouldn’t.

But a funny thing has happened from these daily writings in which I’ve focused myself to think in a positive manner: They seem to have taken a real toll and are making a profound difference. They seem to be changing my outlook on all types of matters, far more than I ever suspected they would. Combined, that conversation and the affect that writing this blog has made got me to thinking about the time when I was sick and the things I may have missed by burying them away. They got me to thinking about what I could glean from those days that is positive? What could I take away and learn from? What did I encounter that made me stronger, better, and wiser? What did I experience that left me more whole and complete? What transpired during that time that left me grateful and that may have repurposed my thinking? What can I re-examine about myself, and how can I use it to move forward?   

And so, that’s what I intend to do over the next four days—write openly and honestly about that time in the hope of discovering the positivity of that time. To dig up the pieces I buried deep, deep in a hole with the thought of never seeing or thinking about again and taking a look around. Trust me, I'd just as soon go on writing about individual musings each day, but what's the point of trying to change and become something better if you're only going to avoid the tough topics that might not be comfortable but hold the most value and potential to grow from?

What I’m certain of right now is that what I’m most thankful for is being alive. What I feel most positive about is having another day to breath. 

Day 77: What next?

Sometimes, failing to live up to your expectations is the best possible thing that can happen. It forces to examine what has occurred, where you didn't prepare well enough, where you didn't perform well enough, and then answer what you're going to do about it. Are you going to give up? Blame others? Make excuses? Or are you going to go back to the beginning and try again until your satisfied with the results? That's the lesson we should be teaching our children. Sometimes the best words we can speak to our kids are the hardest words. Sometimes, what our kids need is the truth, not another pat on the back. They need to know they could do better, and if they want what they are after, they'll have to do just that. They'll have to do better than they've done previously. I don't look forward to those conversations, but I'm thankful that I can have them. I'm thankful when they fall on ears that receive them as they're intended.