Day 30

A picture of someone I miss:

one of these things is not like the other ones...

This one I've had in mind for over a month now, and in all that time I still haven't figured out exactly what I want to say.

I've already explained that Matt was like my evil, mirror-universe Jiminy Cricket; he was also the first person other than my parents to drive me to the hospital while I was writhing in pain.  He did that for me, freshman year, on just a few weeks' acquaintance.  (I'm pretty sure, it being freshman year and all, that he also had to find the hospital.)

Years later - after the Class of 2003 graduated (Dash-less, as you can see) and Matt moved out to L.A. to pursue his career in comedy to inevitable success - he looked at me in one of his rare moments of calm seriousness and said, "I don't think I ever went to an Axies show.

"I'm a bad friend."

I don't remember how I replied, but perhaps now you understand just how gifted a comedian was my friend Matt Carey.  Even in the most solemn and serious of moments I can remember us sharing, Matt said something utterly laughable.

Matt moved out to Los Angeles in January of 2004.  On December 3rd of that year, he suffered a heart attack and died.  He'd just broken a record of comedic success at Improv Olympic in Hollywood; in another two weeks, he'd have been married.

This grief process took a long time, since I spent the first eighteen months after his death intoxicated as often as possible.  I've long since found acceptance, but I will always miss Matt.  I miss his gifts for understatement and for overstatement; for boiling things down just a little bit below their essence; for convincing me of the absolute truth of whatever ridiculous lie he'd concocted on the spot; for standing in a hospital room and making me laugh at my pee in a bottle even while I'm horribly ashamed of it (that, by the way, was the other indignity of Day 25).  I miss his ability to make everyone around him just a little bit better, and a hell of a lot funnier.

But in quiet moments of internal debate, when a choice of actions is before me - when I waver between the wallflower and the wild child, I can still hear his voice.

"Come onnn, Daaave..."

Day 29

A picture that can always make me smile:

Vassar, 2001-ish.  If wis.dm were still around, what they'd be saying...

Is it the fro?  The pick in the front?  Wearing my (Ray-Ban) sunglasses (inside) at night?  The amazingly collegiate collegeness of it all?  Three of the funniest and most brilliantest Vassar Girls in our crew?

It's all of those things and more.  The smile I get every time I view this picture may be a shallow one, but the prompt didn't ask for a picture that always made me smile deeply and meaningfully.

Heather (on the left) is the only person pictured I still have any regular contact with, although I know where Roxy and Katie are and what they're up to.  In fact, the other picture I was thinking about is of me and Katie (on the right), dancing up a serious sweat at a friend's wedding three years ago. But this one has given me so many more smiles over the years.

Day 28

A picture of something I'm afraid of:

This is the closest I could come. Well, it's the closest an exhaustive Google Image Search could come.

I grew up believing with certainty in my eventual Greatness; I'd even chosen - early on - the field of battle upon which I would emerge not just victorious, but unscathed, unchallenged.

Life took over, reality set in.  As a twenty-four year old active addict suffering from depression and Sickle Cell, I deserted the field, battle unfought.  The coward's path, which could lead only to Mediocrity.

I got stronger; I realized that I didn't have to win an Oscar to be satisfied with my contribution to the world.  This other path I've chosen is harder, but fits into reality better.  I know I can do unique and meaningful things with my life, things that will last; I no longer fear Mediocrity.

There's a long distance between Mediocrity and Greatness, isn't there?  A crowded field that narrows along the journey, until you're picking your way down the gilded narrow path with little company in sight.  What I fear is being lost in the field, having my contributions lost in the field, somewhere just north of Mediocrity and way south of Greatness.

I don't need to be Great; I need to be Notable.  I need my contributions to have scope and somewhat indelible impact.  I need that, not to soothe my inner teenager's pride but to answer The Question: what the hell has all of this suffering been for?  What was the point of enduring indescribable emotional and physical torment for the first too many years of my life?

If I can't make the innumerable shit-storms of the past count for something, and count big, it's gonna be awfully difficult to find Meaning in the path I've walked whenever I reach its end.

Day 27

A picture of me and a family member:

Outside of church, ca. '98-'99

Yep, Cat's in the Cradle, that's us.  Or at least it will be, someday, when I have a wife and family and a job that actually keeps me busy and pays the bills.  So we're pretty much stuck at the end of that verse where the son's all, whatever with your affection I just want the car.

I'm not entirely being fair to myself.  Let's just say Dad and I have our similarities and our differences, and the interplay between the two has occasionally led to very bad, very loud arguments which are a thing of the past.  These days, not every disagreement is an argument, and the arguments we have are wholly civil.

Of course, I had to teach him that an "interruption" is not what happens when he reaches a period, there's a pause, and I start to say something but he's decided he still has the floor - but hey.  He's the Dad.

 As with every generation, I look up to him, and still I see all the ways I'll do it "better" when it's my turn; hopefully, this will not merely entail trading one set of character defects and family dysfunctions for another.

Day 26

A picture of something that means a lot to me:

ca. 2007

So, here we are.  The Four Horsemen, as we sometimes refer to ourselves - named not so much after the forerunners of the Apocalypse as for Ric Flair's wrestling squad (two of us have an ongoing love affair with the now-WWE).

I've already introduced you to myself, to Ian and to D; the fourth Horseman is my brother Freddy.  I often think of him as a little brother - this is less because of the fact that he's two years younger than me, and more because of the difference in our life experiences and our perceptions.  Fred has, on the surface, an easygoing nature that belies the serious consideration he gives to much of his life; he just doesn't trouble himself with too many things that don't affect him directly.  He also often sees black and white where the other three here pictured see only shades of gray.  It makes for some interesting exchanges, this diversity of point-of-view.  It's also worth noting, though what it means we aren't yet sure, that Freddy is the only one of us who's been able to find and secure any real long-term committed relationship.  In November, he'll be married to his girlfriend of nearly four years.

What means so much to me is the friendship that sprung up between the four of us.  I met Ian in first grade, D in tenth; I met Fred the next year (also tenth grade; long story), on the basketball courts at lunchtime.  Freddy met D a few weeks later, and they bonded over their aforementioned love of wrestling.  When Ian moved into my house in the Summer of '98 - a dubious and storied move with still-echoing repercussions - the circle was complete.  The bond between the four of us survived all sorts of melodrama (shared equally, I believe) and Machiavellian manipulation (mostly Ian's, he'd admit); unsurprisingly, girls were at the center of it all - less surprisingly, the same girl in a few different cases.  I won't cheapen this bond or myself by evoking that tired and misogynistic rhymed couplet, nor would I so devalue the friendships I had with those young women - nevertheless, it was this bond of bros that passed the tests of time, distance, and conflict.

Now, these men are my touchstones to my adolescence, my compatriots forging forward into adulthood, my support system when I'm sick, and my comedic partners in sickness and in health.  This is a friendship without which I don't think I'd understand myself or my life half as well as I do; certainly, I'd be diminished, and that life would be much more difficult to live.

A Sickle Cell Sufferer's Guide, Part 1

 "Med-seeker."  "Clock-watcher."  "Junkie."  The last is my favorite, because it's the most honest I've heard.  People really think these things about us, don't they?  They have no idea what it's like, for us.  In our personal orbit, our allies are the hematologists - occasionally - and the career nurses, usually the ones who've had some pediatric experience, who've been there and know our suffering to be real.  Here's our first hurdle, my comrades: convincing other people we're really in as much pain as we claim.



We suffer from a disease that almost only affects Black Americans - this creates a socio-political dimension, an angle that has nothing to do with our health and everything to do with our appearance and the stereotypes other people have about us.  This is not a second hurdle, my friends; it's a sad reality that raises the height of the first one.


There are other hurdles, of course, depending on whether or not we can even afford the frequent health care we require, and whether or not we have access to the quality of care that will get us back on our feet and back to our lives quickly.  I've been so fortunate, to be able to afford that high-quality health care, to be able to remove that concern from the front of my frequently troubled mind.  If this has not been your story, I am pained to know it.  But we share so many other battles, don't we?


I'm thirty years old; I've just pulled myself out of yet another bout with Sickle Cell, and I'm in the cleanup phase.  You know what I mean: the drugs are just about fully flushed from my system, the swelling from the infiltrated IVs has started to recede, I don't feel the urge to crawl in to Mommy's bed and huddle into the fetal position so often; but there's still recovering to be done.  I've got homework assignments left to turn in, this blog to reinvigorate, and oh yeah my life to live again.  Because it feels like a little hiatus from life, doesn't it? It feels like we have to stop and drop everything and dedicate the full powers of our hearts and minds to coping with this pain and what we must do to arrest it.  In fact, that's exactly what our bodies require of us, and we have no choice but to obey - that level of pain is so much harsher a master than any Simon Legree.

When the whips of our master finally subside, there's a moment of shocked relief, of returned breath, of looking around the room and waiting for the next blow to fall.  Even as we return to our daily lives, that waiting often fails to leave us in peace, doesn't it?  We'll get so excited about new opportunities, only to remind ourselves that our vision of the future is contingent upon our ability to rise up and face it.  It's easier, so often easier, to surrender any notion of a future; to live day-to-day, not in the healthy way espoused by 12-Step Recovery and therapists everywhere, but in the manner of the terminal patient who wonders upon each sunrise if he'll be granted the gift of seeing the sunset.


Each of us has our list: the List of Things I Really Wanted To or Almost Got To Do, But Got Sick Instead.  My list is not short, and there are some very big items on it; but I've begun a new list, the list of Things I Got To Do Even Though I Was Afraid I Couldn't - and it's growing fast.  These are the little resiliency tricks I want to share from time to time.  I also want to share my experiences, the ones I know you can relate with, because the single most empowering two-word phrase in the English language is "Me, too."  I know, literally, your pain.  I have felt it, and the despair that comes swiftly behind and sometimes well ahead of it.


I want to pass along my little tricks for hospital survival, like how not to strangle that one nurse that's driving you nuts (remember, she's on a long shift, doesn't understand Sickle Cell, and will be out of your life in just a few days).  I want to remind you that the humor of the gallows is your friend.  I want you to know, and I want to remind myself, that a full life is possible for each of us - as long as we know how to cope with its necessary interruptions.


Its dull and throbbing, sharp and stabbing, seemingly never-ending, universe-narrowing, are-you-sure-that-scale-only-goes-to-ten-asking, emotionally crushing interruptions.

Day 25 (The Return)

I'm feeling much better.  Still got some school to catch up on, but what else is new?  Let's move on.
A picture of my day:

The IV's connected to the IV pole is connected to the AC power is connected to the wall.  The nurses can still hear me saying, "I will never break the chain."

Okay, that's not entirely true, I just wanted to quote two songs in my first paragraph (and I wanted one to be Fleetwood Mac).  I do unplug the IV when I feel like sitting by the window - in that case I go from being chained to a wall via an ungainly yet sensitive apparatus, to being chained to an ungainly yet sensitive apparatus.  Huzzah!

It's not all bad, but it's mostly pretty bad.  It hurts, with a pain indescribable to those who haven't felt it.  People who suffer from migraines are pretty close to the mark; however, I've suffered from some pretty debilitating migraines, and while the side-effects are gnarly, the pain is just not as bad in intensity.

When I'm hospitalized, my day becomes a tedium of sleep and pain and indignity (one unmentionable such is pictured; can you spot it?), and being seriously mindful of the fact that I'm now a recovering addict mainlining a powerfully addictive drug.  The doctors and nurses ask me questions about how much pain I'm in, and how much pain I can tolerate, and seem shocked that - though I am in the hospital to recover from this crisis - I toe the line very close to that upper limit of pain tolerance.  I'd rather have some pain than be lit on morphine these days.  I've played the atavistic Laudanum Patient in the past, and it only brought me more pain - literally, since abusing opiate painkillers hyper-sensitizes the brain's pain receptors.

When I first got sober, I was afraid that life as a recovering-addict Sickle Cell patient would be a constant tightrope walk; this was a thought sprung of despair, and despair came with it.  I was wrong; it's only an occasional tightrope walk, and I have the assistance of many good people in picking my way carefully across when the need arises.  Now, it's a thought of realism, and pragmatic hope comes with it.

I used to watch crap-awful TV during my incarcerations.  As a child, my mother watched ABC soaps; since she was bound by her love to sit by my suffering side all afternoon, I watched them too, without complaint - bound by my gratitude and my love.  (The only possible benefit of this was that I met Sarah Michelle Gellar and Nathan Fillion long before Joss Whedon did; this benefit is dubious.)  Now, Netflix Streaming whiles the hours away.  I watched all of Dollhouse during my hospitalization, and all of Avatar: The Last Airbender during my brief home recovery.

I could write an entire book about the days of Sickle Cell crisis and recovery; perhaps that's a task for another time.  Or another post!