Asthma. Six letters. Two syllables. One constant in a life perpetually in flux.
The frailty of the human existence, the whole of human suffering, can be boiled down to its essence when your ability to inhale, to exhale, has been compromised. To sit there, gasping for oxygen the way a celebutante seeks attention, the way the impoverished lay defeated after scouring their surroundings for nourishment. Without oxygen, there is no life. And with very little oxygen, a life can amount to very little.
My first real memory, at least, the first real memory that doesn’t need prompting or priming from witnesses, is of a nameless, faceless man being welcomed into our Niagara County home some 25 years ago, when I was a young, oblivious pup, with a bulky air compressor. Open it up, and there’s a transparent pliable tube and a spaceship-like plastic contraption.
Companion pieces: An eye-dropper of tasteless, colorless fluid. And another glass vial of yet another tasteless, colorless fluid.
This man instructed my parents (and, of course, I am paraphrasing, since I was four and since my memory of my meals from yesterday are foggy, I can’t imagine how patchwork my memory of events from a generation ago could be): “Take this spaceship-looking piece and unhook the top. Fill this dropper up to the 0.5 mark. Empty it into the spaceship-looking piece. Crack both ends of this glass tube. Liquid will dispense into the spaceship-looking piece. Screw the top back on.”
He continued, “Plug this tube into this air compressor nozzle. Plug the other end into this spaceship-looking thing. Place this mouthpiece into the mouth.”
And now, here I am, four years old, chained to a plastic, electrical monolith.
The man looked at me, “Hold it straight.” The man looked at my parents, “Flip the switch and turn it on.”
The noise that followed is the loudest, most unholy whirr I’ll ever recall. As the air compressor sucked pressure from the spaceship, the fluid began to steam. Deep breath in through the mouth. Deep breath out through the nose. Repeat for 15 minutes.
The smoke exodus out the front of the mouthpiece was bad. That was medicine, that was life, floating off into the either. Prevent that. Keep blowing. Keep inhaling. Keep exhaling.
A quarter-hour later, a 900 seconds of forcing a tyke to sit completely still, the switch was turned off. “How do you feel, son?”
And thus began a routine that commenced and concluded every day of my life for the next 15 years. The contraption, which became somewhat affectionately and somewhat disaffectionately monikered “The Machine”, became my de facto lifeline. A twice, and sometimes thrice daily link that allowed me, aspiring to just be a regular kid, several hours of uninhibited access to the most basic of all human needs: air.
But there would be mitigating obstacles to overcome. I watched in horror as a venerable army of stuffed animals were trucked out of my bedroom and to an undisclosed location, never to be seen by me again.
Pollen should be avoided. Basements became troublesome. Exercise with caution. Beware around dogs and cats. Watch yourself in the great outdoors. Don’t get yourself all wound up. You don’t know what mold is yet, but you will know it by the sound of your wheeze. And, for the love of all that’s holy, be careful in the cold. Here’s a cable-knit scarf. Wrap it around your head and don’t, under any circumstances, take it off. This is your life. Or … as much of it as your lungs will allow you to live.
When I was 9, New York State required a physical fitness test, and at that age, each student was expected to be able to run a half-mile, which in the dead of winter meant 18 laps around the gymnasium. After 5 numbing circuits, I knew I could go no further. But I could not quit. Too stubborn for that. No one can know I’m not normal. So I pressed on.
One by one, as the other kids finished up, they noticed my struggle. I would not stop. I would not walk. Each lap around, my teacher asking, “Are you okay?”
Of course I’m okay. I can’t tell you I’m not. That’s weakness. Pain. An admission of abnormality. 15 laps. 16. 17. As I completed my last, painfully slow trek as fast as my little legs and littler lungs could carry me, I laid myself out at the finish. Some kids cheered. Some kids snickered. 17 minutes it took me to run the length of seven football fields. They felt like 90.
Within minutes, I was rushed to the nurses office and my mom was called. My mother – and my god it must have killed her to see her baby suffering like that – watched me and shook her head. “Do you want to die?” I heard that a lot.
From times when I played out too long in the snow, to days when I ducked out of strapping myself to the machine to avoid the awkward “I need to go home for 20 minutes, but I’ll be back” with the neighborhood kids. The kids couldn’t know. They couldn’t see me weak. Nobody could. Bring on the basements. Bring on the woods and the weeds. Bring on the pools, as if my lungs needed more help drowning.
When I was in 9th grade, New York State required another physical fitness test, and at that age, each student was expected to be able to run a full mile, which at the height of allergy season meant four long laps around a stone track. By this time, my lack of endurance was no longer a secret. Concerned friends asked before we began, “You gonna make it?”
Pssssh … yeah … nothing to it, right?
I refused to walk. I refused to quit. Quitting is weak. An admission of abnormality. And I watched with horror as I was passed by the morbidly obese, by the pencil-pushing geeks, by the kid with that gimp because one leg is like four inches longer than the other. How were they doing this? Why couldn’t I?
By the time I crossed the finish line, I couldn’t speak. I couldn’t even moan. 15 minutes. Many could’ve walked faster. I made the lonely, wobbly trek up to the nurse’s office and there, waiting for me, was that spaceship-looking piece all queued up and ready for me to lock lips with it and regain what I’d lost. Well, the oxygen part of what I lost, anyway. My dignity’d long since abandoned me.
Pick-up games of football were awesome when you sat yourself out on first and second down to avoid over-exertion. Staring longingly at the snowball fights your friends on camping trips would hold from the comfort of a warm cabin with hot chocolate was another favorite pastime. Birthday parties where you needed to hide in the bathroom in self-imposed timeout with only an inhaler and your tears to keep you company were a welcome reprieve, as well.
You would never guess by looking at me or listening to me, but there was a time when I used to be a pretty decent soccer player. And I knew as long as I could conserve my energy and get off the field when tired, I could make a welcome contribution to the team. I did precisely that for 12 years of my life. I even tried my hand at baseball and basketball, too, with mixed-to-mediocre results. But soccer was my passion, the one sport I knew I could beat anyone at so long as I wasn’t too tired to try. And so in high school, I finally did try. Try out, that is. And, as the first informational meeting was held in the school cafeteria, and the coach handed out an off-season training regiment, I noticed a glaring obstacle that needed to be overcome.
Homework. In the form of running. Not just up and down a field. But real, distance, “go real far down the road and don’t come back” running. As in miles. Needless to say, I never did my homework. Or, I should say, I never completed an assignment. A half-mile was all I could stomach before I needed to turn around and walk back, puffing on an inhaler the whole way. Wallowing in defeat, one puff at a time. And forget cross-training with swimming. I’d rather be forced to run suicide sprints in the gym for an hour than swim for across open water for even 30 seconds.
As I made my way to our first practice in the fall, I knew I was at a significant disadvantage with that whole “you guys go on without me I need to sit here and stare at the flowers” thing, so I did the only thing I could. I tried to beat everyone in every distance run – even if they were just warmups. I think one time I came in 4th out of 26, but I usually finished in the back of the pack before sucking down Albuterol like it was Gatorade. It was hard out here for a gimp.
The coaches dug my intensity. They dug my commitment. They dug my ball skills and my field vision. I made the team. I played short, abbreviated shifts at center midfielder, because of course you put the kid who can’t run at the position that requires the most running. Two 5-minute shifts each half, and then a crunch-time shift. I scored goals. I notched points. But not enough to stop our team from finishing 3-10-3 and dead last in our division. Maybe if I could have played more, we might have had a winning record. Or maybe if I was European. Whatever was more probable.
I was hooked, but I knew I was going to need to up my endurance. I was going to need to learn to run.
And so that spring, the kid who couldn’t run signed up for the Track team. I listed my specialty events as the 100m, 200m and Long Jump. Because, well, running farther for any reason except from the cops is wholly unnecessary.
My first practice, we ran 2 miles as a warm-up. I finished dead last. I finished dead last in a lot of things in practice. But I surprised some folks, too.
One time, as a joke, they let me anchor a 4x400m relay for my team and go head-to-head against our fastest 400m runner on the other team, and the first three cats on my relay squad were so good ahead of me that I was spotted a 100m headstart. When I got the baton, I ran as fast as humanly possible, to the delight and awe of everyone on the team. I remember the cheers as I came down the home stretch, the long-legged gazelle-like athletic freak behind me gaining on me with every step. I kept telling myself I would not be beaten. I could not be beaten. And I sure as shit don’t quit. I ain’t weak. As he passed me with just a couple short steps remaining, I could feel my rage boiling. THIS IS NOT FAIR. I AM TRYING HARDER THAN YOU. So I gave him a nudge and dove for the finish, arm outstretched, holding the baton. I had won, if you consider running a quarter-mile in 90 seconds to beat another chap who ran it at a 5-minute mile pace, and oh by the way disqualifying yourself because you reached into the other lane with your elbow, a victory. I did. I broke the tape, and in life, breaking the tape is all that matters.
My team cheered and gave me this bizarre nickname “Sweetness” from that point on. I’m not certain what it meant, and I’m not sure that I want to. I’m sure it was derogatory. But I earned a shit ton of respect that day, even if it was mock respect, and I used that as leverage to propel me forward.
I gave my all every practice, every meet. I even medaled in the 200m and Long Jump on rare occasion. I knew if my lungs were going to fail me, my mind and legs would not. But I knew if I were ever going to shake my stigma of being special-needs, I was going to need to do something completely unexpected. Something grandiose. Something furiously, devilishly impossible for a man like me.
In Utica, where I went to high school, there’s this 15K (9.3 miles for you metrically-impaired) road race they host every year called The Boilermaker. It’s hilly and hellish and held in the heat of July.
I had watched my dad run it from the comforts of a water station outside his place of employment, and to me it always seemed like a pipe-dream. But I saw the way the community rallied around each and every runner, from the Kenyans who scorched it to the last stragglers who don’t know the finish line closed hours ago.
I remember my friends telling me, somewhat pithily, “Good Luck.” I remember trembling in fear at the start line. I remember starting in last – on purpose – so that I could say that I passed everyone who finished behind me.
As the gun went off, I knew I was in trouble. Those cop cars that follow the final runners never quite left my sight for the first third of the race. 40 minutes through 5k. I picked up the pace on the downhill stretch and ran the second third in 30. Then, finally, the long, slow uphill battle through that last mile. I staggered and stumbled. I started to walk. I wasn’t going out like this. My legs were numb, my lungs were on fire, my brain light-headed and woozy from the unprecedented torture I was inflicting upon my body.
As I saw the finish line I sprinted to the end. The clock is my enemy, the tape is my friend. Upon finishing, I was immediately helped concerned care-takers and rushed into the medical tent, where I was hooked my battered body up to a “Machine” and an IV. Dehydrated, exhausted, gasping for oxygen, I lay on a cot where my dad, who finished a full half-hour before me, came upon his son: red in the face, blue in the lips yet glowing in unmistakable pride. 9.3 miles in 1 hour, 54 minutes, and 37 seconds. I finished in the bottom 10% of all runners. But I was still a winner … if only in my mind.
When I told my mom I had finished, I can’t remember how she took it. I’d like to tell you she teared up that day, but in the spirit of allowing myself to paraphrase without allowing myself to exaggerate, I’ll just remark that I either recall that she did, or that I wish that she did, and so I just made it so.
Later that day, I was shipped up to the Adirondacks where I spent the next week hiking the five highest peaks in the Upstate mountain range, and did so with legs like jelly but an indomitable spirit. Altitude be damned. The kid who passed out running a mile two years ago, had just finished running 15000m worth of hilly road and hiking over 15000m of breathtaking mountain summits within the span of 12 hours. Even when you don’t break the tape, you can still be victorious.
“The Machine” was retired in 2002, when I was prescribed a drug called Advair. The discus, a mixture of a corticosteroid and an anti-inflammatory agent, has greatly improved my quality of life.
I once went five years without using a rescue inhaler. With it, I was able to continue running at little to no risk to my life and lungs. It is, put quite simply, the most effective medicine I’ve ever been prescribed for any physical or mental condition from which I’ve ever suffered. Is it expensive? Sure, at $300 without insurance it’s a financial catastrophe. One that’s worth every penny. Thank you.
I would run the Boilermaker six more times, with a best finish of 90 minutes. I hiked up Humphrey’s Peak, a 12,000 ft. mountain in Arizona, and Mt. Mitchell, the highest peak on the Eastern side of the Mississippi. In 2004 and 2008 and 2010, I ran half-marathons with a best finish of 2 hours and 11 minutes. In 2009, I biked 54 miles with my father, and in 2010, I biked 67 miles alone. Although I’m not an extraordinary athlete, I can at least claim I’m average, and that’s more of a victory to me than it probably should be.
On Christmas in 2007, my mom bought me what should have been a gag gift, but for me meant so much more. She bought me a stuffed bear. I know, haha, a 25 year-old opening up a present on Christmas and finding a plush toy. But as I looked at the blue and gold tag, it read the following:
“The Asthma and Allergy Foundation of America has certified this toy ‘Asthma Friendly’, manufactured from materials that will not accumulate high levels of household allergens known to cause Asthma.”
For a man who remembers the day when his Mt. Olympus of stuffed bears were taken from him for fear of causing late-night ER visits, the gesture was more than appreciated, it was adored. It is, to this day, the sweetest gift anyone has ever bought me, even if I am in fact far too old to properly appreciate a stuffed bear … But my kid, even if the tyke turns out just as asthmatic as the father did, is going to love cuddling up to it at night – at least, right after I finish telling my child everything you just read above; a series of bedtime stories that I hope one day inspires the little one to follow the dreams that will await during nightly slumber.
And when you, my as-yet-unknown future apple-of-my-eye awakes from your bed, and you do, in fact, chase those dreams down, I hope you run as fast as your lungs will allow. I hope that you do, kid, because if you spend your life conserving your breath, you’re going to miss all the milestone moments that will take your breath away.
POST-SCRIPT: In 2004, I had comprehensive lung function tests performed including chest X-Rays, spirograms and more. It found significant bronchial thickening, and it was discovered my lung function sits at 53% of normal.
After 6 more years of Advair therapy and exercise, that number had risen to just 54%.
It takes both my lungs to do what, in theory, the average human could do with one, and this has been the case for 27 years.
Thirtyist is a series of 30 tales of the 30 people, places, ideas and events that shaped the last 30 years of the life of someone of no particular importance – told in no particular order. To read them all, click on the post tag, “Thirtyist” or on the links below.*
(except in this case, since this is the first in the series)
2. My Iron Lungs