Wednesday, February 24, 2010

File Under: TMI

Raise your hand if you’ve ever spent three days in the hospital just to have a bowel movement. Anyone? If you were sitting in the room with me, you’d probably notice my hand is not raised. But don’t let that fool you. If either of my arms were functional, they would be raised high in the air, albeit with a hint of sheepishness. We are not supposed to talk about these things after all.

We called it Big Job when I was a kid. As in, “Mom! Dad! I have to go Big Job!” I didn’t fully appreciate the validity of that label until a few weeks ago, when I was in an ambulance speeding to the emergency room. The hospital folks didn’t refer to it as Big Job however. They called it a Blockage, caused by severe constipation. It’s one of the fringe benefits of ALS they don’t tell you about in the brochure. But it’s also pretty serious, and in the most literal way possible, the whole episode scared the crap out of me.

Staying regular is a universal challenge, especially as you get older. I remember reading an oh-so-clever “You know you’re over 40 when…” book when I was a kid. Every other joke was some variation on how “getting some action” no longer meant what it used to. Of course I had no idea what “getting some action” meant in any context, but the cartoons with a dad sitting on the toilet were hilarious. Now that I think about it, prune juice became a regularly stocked refrigerator item around that time.

I’m only 37, but the onset of ALS has moved up the regularity battle a few years. Lack of movement + weak abdominal muscles = no action. When you’re paralyzed, using the facilities is tedious, time-consuming, and downright exhausting. Indeed, I’m sick of planning my next bowel movement. Calling it Big Job is a monumental understatement. Picture a half-naked guy in a sling, sitting on a commode chair made out of PVC pipe, with a bucket underneath. Trust me, it’s a shitty situation for everyone involved.

Perhaps that’s too much information. The whole routine definitely falls in the “I never thought I’d be doing this” category, and it’s a real load off my mind to share this crap with others. I’ve even thought of pitching it as an episode of “Dirty Jobs” on Discovery Channel. How cool would it be to have host Mike Rowe wiping my butt on TVs around the world? Maybe you need to be in my situation to appreciate such a scenario. Yeah, probably you do.

My brief hospital stay was certainly embarrassing (em-bare-ass-ing!) But, and there’s always some sort of butt at this point, it helped me realize how emotionally constipated I was as well. I had been holding in my sadness, frustration, and anger for far too long. Ignoring my emotions created an undercurrent of depression, and worse, distracted me from appreciating all that I have. I lay trapped in that hospital bed, away from my girls and my home, and suddenly the dam burst open. I cried for hours. Letting it all out, in more ways than one, helped me return home with a renewed vigor. Time to start writing again, continue my Legacy Project, end the self-pity, and live the life available to me. Time to shit or get off the pot as they say. It won’t be easy of course, but nothing worthwhile ever is. More crap will get in my way, but now I know what to do with it.

PS. One last thing, if you’re tempted to comment on the distasteful subject matter of this post, please don’t bother. The last thing I need is more shit from anyone. ;)

PSS. Beg your pardon. That is the first and last emoticon I will ever use.

Sunday, December 06, 2009

Breakfast in Bed





Friday, October 09, 2009

Legacy B-sides: Part 3

Short and sweet. Mark and I watch some home video of a fantastic fall day back in October of 2007 (the opposite type of fall weather we’ve had this year), and I lament the loss of my pants…Click here.

Sunday, August 30, 2009

1825 A.D.

“O me! O life! Of the questions of these recurring, of the endless trains of the faithless, of cities filled with the foolish; what good amid these, O me, O life? Answer. That you are here, that life exists, and identity; that the powerful play goes on and you may contribute a verse. That the powerful play goes on and you may contribute a verse."

Today is the five-year anniversary of my diagnosis. I hadn’t planned to expend much energy on that fact, much less acknowledge it here. But some intense emotions have found their way to the surface this past week, and I now sit here in awe. Statistically, I should be dead. I shouldn’t even be eating or talking anymore. And how can it be I have two beautiful daughters, a rock star wife, and an incredible network of family and friends to love and support us? Despite the considerable decay of my body, today I am overwhelmed with humility and joy.

Our journey has been shocking, frustrating, beautiful, daunting, frantic, intimidating, magnificent, majestic, mind-blowing, terrifying, and wonderful. It has also been quite literally breathtaking, since my breathing capacity is less than half of what it used to be. My arms and legs are nearly useless, although my legs can still bear weight, and my right hand can drive my wheelchair. I need help with just about everything, and can rarely be alone. Lately I have struggled to make this choice, but today I choose to celebrate and rejoice in the myriad ups and downs of this journey. I am fortunate for all of it.

As I’ve mentioned before, to deal with the initial shock five years ago, I would often play a little mental game. I would pretend that on August 30, 2004, I was killed in a car accident, and I had been allowed to come back with ALS. Instead of counting down the number of days I had left, I would count up, and every day of my life from then on would be a bonus.

I am at 1825 and still going. The powerful play still goes on. And I still have a verse to contribute.

Tuesday, August 25, 2009

Legacy B-sides: Part 2

Mark and I talk tools, technology, mind reading, anal-retentive spreadsheets, the relative cakewalk of my ALS up to that point (early 2007, just over two years A.D.), and the single most important concept in the entire universe.

Click here.