IN RETROSPECT
I apologize for the lengthy silence on my end. I’m still trying to find my blogger-grove, I guess, and with my Dad’s retirement party in Ohio and packing for my time in DC things have been a little frenetic. Still, I realize that it’s been almost two weeks since I posted and—as someone wrote to me in a where’s-the-next-post? e-mail this morning—“that’s just wrong.” So here we go:
Dad’s retirement party was a smashing success. Thanks to the planning committee and the seemingly tireless work of its chairperson, Katie, everything was (dare I say it?) perfect. Food, wine, gifts, speeches, presentations, more gifts, music, memories, even more gifts… it was a spectacular night. Dad’s former co-pastor, Deborah, was the keynote speaker and she gave a brilliant talk that was simultaneously hilarious and moving, the kind of tribute Dad deserved…. To my father’s great credit the word on everyone’s lips last Saturday night was Grace. Almost every speaker said that he had taught them about God’s Grace. And I gotta say—If that’s not one hell of a legacy, I don’t know what is.
My siblings and I, of course, had a hand in the evening’s festivities. In my family we do a lot of performing for one another; birthdays, anniversaries, graduations all require something dramatic to mark the occasion. Christmas morning takes hours because every other gift is accompanied by a reading or a song. Anything worthy of a celebration is worthy of a presentation, and the bigger the celebration, the bigger the presentation. So, for Dad’s party, we prepared 45 minutes worth of poetry, skits, and original songs. And it all went very well.
Being up there, though, performing in front of hundreds of people again, was interesting for me. It was one of those reality check moments that I occasionally experience, one of those oh-that’s-right-I’m-disabled moments. Shuffling around on those rented risers, trying to play guitar while standing, walking (sans cane) with my hands full of props, I felt very unsure of myself physically. Now, it wasn’t that long ago that I was performing it is no desert all the time, wandering around a stage for two full hours without a cane or a sibling to lean on, so it got me thinking, remembering how I got here.
Back in 1994 when I was still healthy and unendingly energetic, I severely tore my quad muscle while training for soccer, an injury that benched me for the entirety of my junior year. By the end of the following summer, considering that my leg was refusing to heal and my passion for theatre was growing, I opted out of my final season of high school soccer and instead joined a touring theatre group. At the time it felt a little like a choice between macho-teenage masculinity and awkward-teenage intellectualism, but I don’t remember feeling all that torn. From that point on I strongly identified myself as an artist and the athlete in me started disappearing. Still, in the years following my decision to quit soccer I had a bit of an inferiority complex when it came to my athletic abilities, and I remember times when I’d try to take part in sports and I’d think to myself, “I have to start working out again—I am so out of shape.”
Of course, I wasn’t really out of shape at all…. Well—I guess I was, but that wasn’t the real reason for my lack of strength. Looking back on that period of my life, I realize that there were a lot of warning signs that I simply dismissed in that way: “I am so out of shape.”
The summer before my freshman year of college, Kristin and Ken (my sister and brother-in-law) took me out in their boat on the Ohio River and tried to teach me how to water ski. I was determined to learn, but time after time, as the boat shot forward, I’d pop up for a split second and then hit the water with my face. I probably tried fifteen times. I just couldn’t pull myself out of the crouching position and up onto the skis—I just didn’t have the leg strength. “I am so out of shape,” I said to myself. “I have to start working out.”
Just after my arrival at Witt, I came across some guys kicking around a soccer ball. “Lemme knock one,” I said, and tried to give it the ol’ Stroeh-power-kick I’d learned from my siblings. Instead of sailing into the air and landing perfectly at the feet of the guy 40 yards away (as it would have done two years prior), the ball shanked off to my right, feebly rolling to a stop in the high grass. I was embarrassed and annoyed with myself and undoubtedly made some comment about injuring my leg—“Oh, man,” I probably said to the guys, “I ripped up my quad real good a few years ago and I still haven’t recovered. I gotta get back into shape.”
Then, of course, there was the “weird walk” I ignored for who-knows-how-long. My brothers noticed it in November of 1996 and made me see my doctor, who sent me to a neurologist, who sent me for a CAT scan… and the rest is sorta history.
But not only history, I guess, because it’s not over. The creeping slowness of my increasing weakness prior to diagnosis kept me blissfully ignorant of what was happening in my body, but now that I know that I have a progressively debilitating disease, one would think that I would be more attentive to increasing fatigue, or more pain, or changing sensation. And that’s not really the case. Prior to rolling into Rehoboth Beach I never would have guessed that I’d be sitting here today in the gorgeous Family Lodge at NIH, writing a blog about my impending surgery. But, now that I know what’s up, I look back and everything seems so clear; the warning signs were everywhere: Once in a while in the morning I have a difficult time pulling on my socks and tying my shoes… Sometimes at dinner I can't hold my fork properly... The frequency of cramps while playing guitar or writing in my journal definitely increased over the last year… Occasionally, while smoking one of my beloved Al Capone cigarillos, I'm unable to hold it between my forefinger and middle finger; it slips out and hits the ground (particularly upsetting if the ground is dirty and I'm outta cigars).
And it’s not only about my hands. Being back onstage last Saturday reminded me that there have been changes in my legs in the last few years too. Standing there with my brothers and sister, leaning on John so I wouldn’t fall, I knew that things were different. My whole body is weaker than it was a few years ago, I just didn’t notice it as it was weakening.
But HOW? I sometimes ask myself. How is it that I don’t notice?
And I don’t really know the answer to that. I guess it mostly has to do with the fact that, while I’m perfectly aware that I have NF, I just don’t think about it that often. Even with the braces and the cane and the soreness in my legs and back, I have other things on my mind—
“How am I going to end Act One?”
“Should this be in present tense or in past tense?”
“Would it be better if I spent less time writing and more time trying to get some stuff produced?”
These are the things that slam around inside my head all the time. There’s no room for NF. Plus, I’m an incredibly lucky guy with great friends and an amazing family. I have work that I’m passionate about and adventures I want to pursue, I have a beautiful apartment in a city I've always wanted to live in, my roommate cooks gourmet meals all the time and likes to share, and every Monday Bravo shows reruns of The West Wing all night long. Even with the pain and fatigue and weakness, I’m really quite content. And that’s how, I guess. That’s how I don’t notice.
As I write this, my left forefinger is twitching, teasing me, hinting that I’m going to have to start typing one-handed soon. So, I’ll close. My parents are staying down the block and Deborah (the brilliant former co-pastor) just got into town, so we’re going to go find some food. It's always fun to pick the restaurant when you know someone else is paying....
Dad’s retirement party was a smashing success. Thanks to the planning committee and the seemingly tireless work of its chairperson, Katie, everything was (dare I say it?) perfect. Food, wine, gifts, speeches, presentations, more gifts, music, memories, even more gifts… it was a spectacular night. Dad’s former co-pastor, Deborah, was the keynote speaker and she gave a brilliant talk that was simultaneously hilarious and moving, the kind of tribute Dad deserved…. To my father’s great credit the word on everyone’s lips last Saturday night was Grace. Almost every speaker said that he had taught them about God’s Grace. And I gotta say—If that’s not one hell of a legacy, I don’t know what is.
My siblings and I, of course, had a hand in the evening’s festivities. In my family we do a lot of performing for one another; birthdays, anniversaries, graduations all require something dramatic to mark the occasion. Christmas morning takes hours because every other gift is accompanied by a reading or a song. Anything worthy of a celebration is worthy of a presentation, and the bigger the celebration, the bigger the presentation. So, for Dad’s party, we prepared 45 minutes worth of poetry, skits, and original songs. And it all went very well.
Being up there, though, performing in front of hundreds of people again, was interesting for me. It was one of those reality check moments that I occasionally experience, one of those oh-that’s-right-I’m-disabled moments. Shuffling around on those rented risers, trying to play guitar while standing, walking (sans cane) with my hands full of props, I felt very unsure of myself physically. Now, it wasn’t that long ago that I was performing it is no desert all the time, wandering around a stage for two full hours without a cane or a sibling to lean on, so it got me thinking, remembering how I got here.
Back in 1994 when I was still healthy and unendingly energetic, I severely tore my quad muscle while training for soccer, an injury that benched me for the entirety of my junior year. By the end of the following summer, considering that my leg was refusing to heal and my passion for theatre was growing, I opted out of my final season of high school soccer and instead joined a touring theatre group. At the time it felt a little like a choice between macho-teenage masculinity and awkward-teenage intellectualism, but I don’t remember feeling all that torn. From that point on I strongly identified myself as an artist and the athlete in me started disappearing. Still, in the years following my decision to quit soccer I had a bit of an inferiority complex when it came to my athletic abilities, and I remember times when I’d try to take part in sports and I’d think to myself, “I have to start working out again—I am so out of shape.”
Of course, I wasn’t really out of shape at all…. Well—I guess I was, but that wasn’t the real reason for my lack of strength. Looking back on that period of my life, I realize that there were a lot of warning signs that I simply dismissed in that way: “I am so out of shape.”
The summer before my freshman year of college, Kristin and Ken (my sister and brother-in-law) took me out in their boat on the Ohio River and tried to teach me how to water ski. I was determined to learn, but time after time, as the boat shot forward, I’d pop up for a split second and then hit the water with my face. I probably tried fifteen times. I just couldn’t pull myself out of the crouching position and up onto the skis—I just didn’t have the leg strength. “I am so out of shape,” I said to myself. “I have to start working out.”
Just after my arrival at Witt, I came across some guys kicking around a soccer ball. “Lemme knock one,” I said, and tried to give it the ol’ Stroeh-power-kick I’d learned from my siblings. Instead of sailing into the air and landing perfectly at the feet of the guy 40 yards away (as it would have done two years prior), the ball shanked off to my right, feebly rolling to a stop in the high grass. I was embarrassed and annoyed with myself and undoubtedly made some comment about injuring my leg—“Oh, man,” I probably said to the guys, “I ripped up my quad real good a few years ago and I still haven’t recovered. I gotta get back into shape.”
Then, of course, there was the “weird walk” I ignored for who-knows-how-long. My brothers noticed it in November of 1996 and made me see my doctor, who sent me to a neurologist, who sent me for a CAT scan… and the rest is sorta history.
But not only history, I guess, because it’s not over. The creeping slowness of my increasing weakness prior to diagnosis kept me blissfully ignorant of what was happening in my body, but now that I know that I have a progressively debilitating disease, one would think that I would be more attentive to increasing fatigue, or more pain, or changing sensation. And that’s not really the case. Prior to rolling into Rehoboth Beach I never would have guessed that I’d be sitting here today in the gorgeous Family Lodge at NIH, writing a blog about my impending surgery. But, now that I know what’s up, I look back and everything seems so clear; the warning signs were everywhere: Once in a while in the morning I have a difficult time pulling on my socks and tying my shoes… Sometimes at dinner I can't hold my fork properly... The frequency of cramps while playing guitar or writing in my journal definitely increased over the last year… Occasionally, while smoking one of my beloved Al Capone cigarillos, I'm unable to hold it between my forefinger and middle finger; it slips out and hits the ground (particularly upsetting if the ground is dirty and I'm outta cigars).
And it’s not only about my hands. Being back onstage last Saturday reminded me that there have been changes in my legs in the last few years too. Standing there with my brothers and sister, leaning on John so I wouldn’t fall, I knew that things were different. My whole body is weaker than it was a few years ago, I just didn’t notice it as it was weakening.
But HOW? I sometimes ask myself. How is it that I don’t notice?
And I don’t really know the answer to that. I guess it mostly has to do with the fact that, while I’m perfectly aware that I have NF, I just don’t think about it that often. Even with the braces and the cane and the soreness in my legs and back, I have other things on my mind—
“How am I going to end Act One?”
“Should this be in present tense or in past tense?”
“Would it be better if I spent less time writing and more time trying to get some stuff produced?”
These are the things that slam around inside my head all the time. There’s no room for NF. Plus, I’m an incredibly lucky guy with great friends and an amazing family. I have work that I’m passionate about and adventures I want to pursue, I have a beautiful apartment in a city I've always wanted to live in, my roommate cooks gourmet meals all the time and likes to share, and every Monday Bravo shows reruns of The West Wing all night long. Even with the pain and fatigue and weakness, I’m really quite content. And that’s how, I guess. That’s how I don’t notice.
As I write this, my left forefinger is twitching, teasing me, hinting that I’m going to have to start typing one-handed soon. So, I’ll close. My parents are staying down the block and Deborah (the brilliant former co-pastor) just got into town, so we’re going to go find some food. It's always fun to pick the restaurant when you know someone else is paying....
Tomorrow's Post
I'll post tomorrow. I promise.
- D
posted by Dan at 2:25 PM
1 Comments:
i've got a whole team of dramaturgs working round the clock on the "good vibes" train. see you after the jump...
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