The Unspectacular Exploits Of The Immobile, Hyphenated Squid-Boy

It didn’t take long before my chest had healed enough for it to be unbandaged, I got the real shock of getting to see and be able to assess the stark changes that would now be a permanent fixture of my bodily landscape. Not only was the old, faded scar beneath my left breast now accompanied by a long, puckering, scabbed over wound with prickly translucent sutures running up and down the full length of my sternum, but I also had a series of four long rubber hoses jammed two by two into either of my sides to drain the fluid that had been accumulated in my lungs while I began to recover. Those creeped me out far more than the fact that some guy had cleaved open my chest and proceeded to root around with my organs while I slept it off. As cool as a kid might think looking like Doctor Octopus would be for a little while, it’s a whole ‘nother bit of unpleasantness to feel bits of sharp, hard plastic shifting around just beneath your skin whenever you try and move or turn around even slightly.

You get to have that much constant discomfort as a consistent part of your daily routine, and you learn to adapt yourself. Making mental note of how which degrees of movement would cause the tubes to shift or grind against my innards, and doing my damnedest to avoid them, which was easier said than done. The level of mobility that lent me was exactly the level of mobility of spending most parts of my day playing Nintendo with my feet and urinating into a medical-grade jug. I guess that’s a fine lifestyle, if you’re into living like a semi-functional beached whale. Eight year old boys however, are a peculiar breed who are typically hyped up on sugar and a special form of cooties. Even in my weakened state, I wasn’t having with any of that noise.

One day, I made the cocky mistake of rejoicing aloud in triumph to my mom and a nurse at my unexpected emancipation when one of the tubes fell out of my side and hit the floor with a wet thump. Unfortunately, this sense of newly liberated freedom was short-lived as the nurse walked over, knelt down and grabbed the tube and took it away for a moment before coming back with a new, sterile one. She muttered an apology to me and told me to try and stay calm as she inserted the new tube where the old one had been. Not much warning, no anesthetic, I just felt a quick, hard push accompanied by a lot of screaming on my part. My young mind may have exaggerated the pain of it, but the way I’ve recalled it ever since, I can’t think of any physical pain I’ve encountered in my life that was worse or more disturbing than being awake for my “stabbing”.

From there, the road to recovery was slow. I spent over a week in a hospital bed at Mayo with my Mom and Grandmother staying in the room with me for as long as the doctors would allow visitors and periodic calls from my Dad back home while he worked to keep the bills paid. The time I spent at Mayo after the surgery was finished and I woke up added up to about a week, but I remember the time passing as if it were a month. Fortunately, I had a huge stack of comics, video games, and cartoons to help pass the time.

Then came the nightly blood tests. Nurses, entering the room quietly at night with needles and prickers and menacing, snarling nurse fangs, drooling for their nightly fix on my sweet, sweet O negative. These nightly acts of aggression were neither appreciated nor enjoyed. The repeated assaults built a level of aggression into me that would fill more and more with each encounter. Incensed with rage, I became a scourge to every nurse in the place. I didn’t trust them and I made it a happen to tell every single one of them as much when they walked through the door. Turning towards the inner darkness that kept me immobile in my bed and frustrated in the world around me as these four tubes in my chest held me into place, looking like some eight-armed octopi, I resigned to my fate.

I would become the Squid!

The toys I had accumulated from friends, family, and mystery donors had become the weapons in Squid Boy’s arsenal for this great battle. Come at a guy twice daily to prod him with needles, and I don’t care how good your intentions are, there will be hard feelings. Having had enough, I made my intentions known to this poor woman, with as much venom as a seven year old boy could muster.

“Come any closer with that needle, and I will shoot you in the head.”

Fortunately, the only shooting taking place would be from the barrel of a spring-loaded accessory that came with a Batman action figure (Circa the first Michael Keaton flick) that would launch little plastic projectiles as far as maybe three or four feet with the ballistic power of a beetle crashing repeatedly into the face of a lit lightbulb. The nurse, feeling sorry for me, played along in the interest of humoring me and getting her job done, allowed me to “shoot her in the head” while acting like it really hurt before I let her go at me with the needle again. It wasn’t the last of the blood tests in my time at Mayo or beyond, but the nurse’s willingness to play along with exorcising my frustration was enough to get me over a certain degree of the frustration that had been plaguing me. After that point, I swore I’d never get touched by another needle as long as I lived. Despite this, my do-gooder nature coupled with my universal donor blood type make me a frequent target of the Red Cross’ Vampire Call List and I got my first tattoo on my 30th birthday with intentions on probably getting a couple more before too long. (Again, sorry Mom…)

So much for that, Squid-Boy.

T’was The Night Before Major Invasive Surgery…

The ages of 0 to around 6 years old, I have very little recollection of. The time my memory really kicked in and I consider my life to have truly “begun” oddly enough happened at the time when it was looking very likely that it was closer to it’s end. When the time finally came for my second surgery, my parents were, needless to say, on pins and needles. One of my first vivid memories was of the days that lead up to my surgery in Rochester Minnesota at the world renowned Mayo Clinic. We showed up a few days early to see some of the sights in the area and hopefully do a few things to lighten the mood and have some fun before the inevitable came up. The stress was compounded by the fact that my dad was unable to come with us when we first went to Minnesota because of work, so our trip consisted of myself, my Mom, and my Grandmother. Our stay was taken care of by the local Ronald McDonald House, (which means I will refrain from any McDonald’s bashing for this particular post as a sign of good will.)  consisted of all the “fun” my mom could cram into the time period before we hit the zero hour and I would go back under the knife for the first time in nearly seven years.

It was a couple  of weeks before my seventh birthday and by the time my birthday was going to hit, I would have, in the best case scenario, been laid up in a bed on an entire slew of drugs. We spent our time going from activity to activity which I’m sure must have cost them a fortune. A trip to the Minnesota Zoo, which I honestly don’t remember a damn bit of, no matter how hard I try.

The night before my surgery, and one of the most fun experiences of my early life that I remember to this day was spending several hours in a local arcade playing the Teenage Mutant Ninja Turtles Arcade Game with my mom.

We died.

We died a lot.

All said and done, my mom stuck it out like a trooper and kept us in quarters until we beat every level of that game from beginning to end. By the end of that couple of hours, we had ended up pumping about fifteen bucks into that machine together, which, in the days where playing a game on an arcade machine only cost a single quarter meant we died at least sixty times before we were done.

I had a lot of fear looming over my little head as the days before my surgery edged closer. It became a point of dread for me, even though I remained blissfully ignorant to how much was truly at stake once they put me to sleep. I was just worried it would hurt. I was worried I might wake up in the middle of it and panic when I saw my chest laid open like Freddy Kruger had gotten a hold of me. I worried about what the scars would look like. Practically every exaggerated, childish nightmare scenario that could have sprung from something like this came into my head at the time.

For that night though, all those bad thoughts just sort of went away without acknowledgement. All I remember from the days leading up to my long hospital stay were happy ones, spent with my parents, doing fun things and feeling extremely loved. The fact that my parent’s marriage was in the final stages of unraveling and the sense of fear that they clearly must have had about what was going to happen to me remained completely undetected in my eyes. My mom and dad had extremely good poker faces and the fact that they were able to keep me so positive more than likely had a lot to do with how I recovered later on.

If I ever have a child with a health problem like my own, I only hope that I’m able to do the same for them that Betsy and Allen did for me. I can only imagine the horrible thoughts that were coursing through their heads.

Don’t Dump Sack The Reaper

“I went into the hospital in 1946, with advanced tuberculosis, and altogether I spent three and a half years in the hospital. By the time I got out I had had 10 ribs removed, one lung collapsed, a piece of the other one removed, and there were some severe complications from an experimental drug that was used to keep me alive. During these years I was given up for dead several times. One doctor told me that I could not live, I just didn’t have enough lung capacity, and I should just go home and sit quietly and I would soon be dead. Now, I am blessed with a rotten attitude, and my response to statements of this nature is, Fuck you, no one tells me what to do!”  – Hubert Selby Jr., February 24, 1999, LA Weekly

As we’ve previously determined, death and I have grown to have a complicated relationship.

 

Something unlocked in my head on the day that I learned the full scope of my first years and how close I came to losing it all. There’s a certain perspective that can come with the idea of coming that close to meeting your maker. I’m glad that I didn’t have a clue about it until my teenage years when I was about to become all “dark and brooding” anyway and was able to enjoy a mostly regular childhood. I have my parents, particularly my mother to thank for that. In the face of all that uncertainty and darkness, I’ve grown a pretty good sense of humor about it all. When you come from a background that limits you from certain activities like playing sports or running around rough housing for long periods of time like a normal, growing boy, you can either be depressed about it, or find a way to adapt.

My way of adapting was through humor. As I got older and grew to better understand things, gallows humor became a driving force in my personality. I can’t help it, when it comes to storytelling, I like things on the dark side, because it wouldn’t be a story if “everything stayed okay” all the time.  If you can inject some sort of humor into something horrible or sad, then you’ll make me your biggest fan. Around my teenage years, I began referring to my life past the age of eight when I had my second surgery as “my borrowed time” and it’s been a terminology I’ve stuck with ever since. I used “my borrowed time is now old enough to drink legally” in a speech to some officials of Connecticut government on behalf of the American Heart Association shortly after I turned 29.

I know that in saying things like these that I tread close to the territory of those who paint their finger nails black and expend an alarming effort to avoid contact with direct sunlight, but I assure you, this is not the case.  I have a deep love and passion for life and feel that anyone who worships the idea of dying is wasting their precious and short time here on this planet. The idea of suicide angers me to an unreasonable degree, and I understand that people who feel this way really don’t think that there’s another option for themselves, and while I’m sad for them, I just can’t bring myself to respect that kind of mentality, given my unique place in life and my relationship with defying odds and expectations.  Knowing now, how close I’ve come on repeated occasions to dying adds a degree of preciousness to my life as a whole, as well as the concept of the future for me.  Essentially, since the day I was born, I started living on borrowed time. My borrowed time began extending slowly over all these small periods of time, the time between my birth and first surgery, the matter of years between my first surgery leading up to my second surgery, the time after my second surgery as I began to not just recover, but flourish in ways no one ever expected me to. To this day, I’ve grown up to be thirty years old and counting.  I’m a successful, published writer after pursuing my dream for over a decade, I’m finally getting through college, and I’ve become a massive health nut who works out like a fiend.  All of the limitations I had had placed on me growing up, I’ve gone on to obliterate most of them as time went on.  My relationship with death has informed the way that I live my life and how I will continue to live it until the day that borrowed time finally decides to expire.

Death is not something to be feared. Everybody does it, sometimes it happens to us sooner than we would like. We never know when our time might come, so blah, blah, blah, “YOLO” this, “carpe diem” that. Death is not something to be embraced. Sitting around dwelling on the end as though it were some hot, malnourished guy or girl in skinny jeans with a pallor to their flesh not unlike egg nog, is just as much a waste of time. Have a healthy respect for it. Try not to go careening wrecklessly into it, but don’t deprive yourself of new adventures out of anxiety over it. Try and keep your personal levels of irresponsible stupidity to a minimum. Just know that there’s no reason to fear it.

Know this intimately and you may notice that you tend to care a lot less about the more trivial things in life.

A Little Piece Of Land In Georgia

      Soon after receiving the news of my health situation and rushing me to the specialists at Egleston Hospital (Now known as CHOA) in Atlanta, Georgia, my parents and I reunited for a brief matter of minutes before the decision was made to fast-tracked into a surgical suite. There, I underwent a heart catheterization which showed them the sizable hole in the wall between my two ventricles. At the time, major surgery on newborns was a mostly unheard of idea, so instead, they chose to perform a more temporary measure that commonly helped to buy children a bit more time. The procedure  that involved a small incision just below my left breast and the placement of a surgical grade rubber band around the  in my heart to keep more fluid from escaping than necessary. The hole between my ventricles was big enough that the rush of  blood that was escaping was going fast and with enough force between the two chambers that it could potentially cause a lot of damage if it were to be left to run unchecked.  The entire procedure was never meant to be any sort of remedy to the situation so much as a prophylactic measure to hopefully buy me some chance at a slightly extended future.  The idea was that hopefully with this band, I would live several more years until A) medical science advanced enough to tell doctors how to fix this problem and B) my body had matured and developed enough to withstand the type of surgery that would have entailed.

My stay at Egleston lasted for about six weeks. They performed the surgery when I was 2 days old and afterwards they kept me all that extra time to monitor my medications. I had a lot of trouble with eating at the time and ended up losing two pounds in all my time in the hospital. I went from being the biggest baby in the nursery where I was born to losing a solid 2 pounds in just my first few days. It got to the point that they began adding a special formula to the milk they fed me to give me some extra calories. My entire family remained on pins and needles for the first couple of weeks of my stay. Eventually, my dad ended up needing to go back to work while my mom stayed on maternity leave and my Grandmothers from both sides, Grandmother Foster and Grandmom Ward stayed with my mother and I at the hospital the entire time.

My parents had told me sugar-coated versions of all these facts and stories as I grew up, because I was a curious child who always knew I was different from other kids and wanted to know why.  I knew I had a heart problem and I knew that one day I would need to have another surgery to fix the problem. We just didn’t really talk much about what could happen if I didn’t get the surgery or how dire my situation had been. It’s part of why, despite my particularly extreme circumstances, I feel like I had a relatively happy childhood. I wasn’t abused, I didn’t live in poverty, (although there were some rough times in our later years, but that’s a story for another time) and I never felt unloved in those early years. Even when friction began to build in my parent’s marriage, they managed to keep my brother and I insulated from it.

As a teenager, well beyond the years of my getting through the second surgery and seeing a marked improvement in my health and well-being, I started asking more questions of my parents, who had long since divorced and become more apt to sharing some of the more darkened details of the circumstances of my formative years.  The biggest revelation I had revealed to me was that my grandmother and grandfather, who had bought a cemetery plot for themselves at Brooks Cemetary in Brooks, Georgia, had sent my Aunt Kathy, one of their older daughters out of the hospital on the day they heard the news about my defect diagnosis to buy a small piece of space for my remains to go, in the seemingly very likely event that I passed in the days that followed.  Since my grandparents have passed, we haven’t been able to find record of whether or not that space of land is still sitting there in my name. For all we know it’s been sold off a long time ago and is occupied by some other departed soul. One thing remains for sure, the idea of having a grave site waiting for you practically all of your life can have a, shall we say, dramatic effect on a young man as he grows forward into adulthood.