The frailty of the existence and thin veneer of life get thrown into sharp relief when your ability to inhale and exhale have been compromised. Imagine, day after day, gasping for oxygen — walking up stairs, sitting at home, or just during a casual night out with friends. This has always been my life … it still is.
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.
My first real memory is of a nameless, faceless man being welcomed into my family’s home almost 35 years ago, when I was a young, oblivious pup. (I assume in modern parlance these people are called “Medical Device Technicians,” but I can’t truly be certain of said banalities.) He was carrying with him a bulky rectangular thing which could be opened up, and it looks a little something like this:
Contained within: a transparent pliable tube and a spaceship-like plastic contraption, along with accouterments like an eye-dropper of tasteless, colorless fluid, and another glass vial of another tasteless, colorless fluid.
So, to give you a crash-course in how this works: you take this spaceship-looking piece and unhook the top, fill the eye-dropper up to the 0.5 ml mark, and empty it into the spaceship-looking piece. Then, you crack both ends of a glass tube so liquid will dispense into the spaceship-looking piece.
Then, you screw the top back on, plug a tube into an air compressor nozzle, plug the other end into the mouthpiece, and then place this mouthpiece into your mouth.
I did this, and then I flipped a switch on the box, and listened to an unholy, whirring rumble fill the room. 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. I repeat this for 15 minutes. I am four years old, chained by a plastic tube to an electronic monolith.
A quarter-hour later, after some 900 seconds of forcing a tyke to sit completely still, we were finished up. My parents asked me how I felt. I felt a little better. Compared to what? I do not know. I’d been in and out of emergency rooms my entire life.
And thus began a routine that commenced and concluded every day of my life for the next 15 years. A twice-, sometimes thrice-daily ritual that allowed me, aspiring to just be a regular kid, several hours of semi-uninhibited access to air. Some people can breathe for free. I never could — and I still can’t. And it costs more every day.
I have, for most of my life, been able to move air into and out of my lungs at somewhere between 50 and 60% normal for a human my size and age. That has, with rare exception, never changed. It has defined my life, and limited it in ways I will probably never fully understand or calculate. This has, predictably, occasionally made me a sad, bitter person — but also a persistent one.
When I was nine, 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 the Upstate winter meant 18 laps around the gymnasium. After less than five 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. I was not okay, but I could never admit that. Not to kids who were far more okay than I ever would be.
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. There were cheers and snickers for the wheezing weakling who took 17 fucking minutes to run the length of seven football fields.
Within mere seconds, I was rushed to the nurse’s office and they called my mom, and she looked at me and, as she often asked in those days, asked me, “Do you want to die?” I never answered her honestly. Hell, I’m still not sure of the answer.
I would occasionally play out in the snow, and come in from the bitter cold to breathe into this spaceship thing for 20 minutes and then show back up trying to explain away inquisitive queries from comrades, “Hey, man. Where’d you go?”
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?”
Pfffffft … 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-pushers who’ve never moved faster than a walk, by the kid with that gimp because one leg is like four inches longer than the other, by the kids even the bullies felt were too weak to beat up. 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. 18 minutes. Many could’ve walked faster. A few of them did. I made the lonely, wobbly trek up to the nurse’s office and there, waiting for me, was that spaceship-looking piece all cued 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 had 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. Another favorite pasttime of mine was staring longingly out the windows of a warm cabin at the snowball fights my friends would host on camping trips. Birthday parties where I needed to hide in the bathroom in self-imposed timeout with only an inhaler and my tears to keep me 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.
Yet, 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 gassers in the gym for an hour than swim 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 my whole default programming of “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 warm-ups. 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. My teammates called me “gimpy.” It’s 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. Or had both lungs. Whatever was more probable.
I was hooked on high school soccer, and I’d always been, but I knew I was going to need to up my endurance. I was going to need to learn to run.
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, the track coach 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 anyway. I broke the tape — and in life, breaking the tape is all that matters.
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. 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 hope it’s in tribute to Walter Payton. I’m more certain it’s derogatory.
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 yet, I knew if I were ever going to shake my stigma of my sick-as-fuck respiratory system, I was going to need to do something completely unexpected. Something grandiose. Something furiously, devilishly impossible for a man like me.
In Utica, New York, 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 signed the fuck up.
I remember my friends telling me, as I prepped myself to lace them up, “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. 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.
I wasn’t going out like this. 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 rush me into the medical tent, where I 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. She, more than likely, said nothing of note at all.
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 15000 meters worth of hilly road and hiking over 15000 meters 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, had 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‘d ever been prescribed for any physical or mental condition from which I’ve ever suffered. Expensive? Sure, at $300 without insurance it’s a financial catastrophe. A financial catastrophe that was worth every penny.
I would run the Boilermaker race 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 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 not about to die, and that’s more of a victory to me than it probably should be.
2016 marked my 30th anniversary of being diagnosed with Asthma. I celebrated with a cigar. Because why the fuck not. It’s now 2019.
This morning, I had my semi-annual lung function test at the pulmonary doctor’s office, where they take a chest CT scan, run me through a variety of breathing exercises and listen with a stethoscope to determine just how gravely doomed I am and estimate how many years I’ve left to live. The verdict? 2–5 years remained.
The numbers from the tests, as expected, weren’t great. Diagnosis: Asthma. A normal lung for a man my age can breathe out 3.64L of air (almost a gallon) in one second. I can breathe out 2.37L, about 65% of average, which is to say demonstrably terrible for a man my age — if I was over 40, they’d check me for COPD — but this was about right in line with my normal. My lung age is in the late-70s.
Between three and six seconds of a forced exhale, the average man my age can breathe out another 3.96L of air. I can breathe out 1.30L. That’s 32% of average, and if I was over 40 and smoked three packs a day, you would swear I have emphysema. I do not. I simply don’t have it in me.
Sure, scary for most humans, but standard for me. If I were older, you’d tell me I had a couple good years left and dope me up with a long-term cocktail of steroids, oxygen tanks and the shit they peddle in those commercials with the elephant to keep me alive as long as humanly possible.
That’s the bad news. That’s the news I haven’t stopped receiving since before I knew how to spell “news.”
The good news, as always, comes from the CT scan. The doctor told me that my lungs, aside from the smallest of airways, are perfectly clear. Not inflamed. Not constricted. Not scarred. Not obstructed. No bronchial thickening or allergic sinusitis. Nothing. It is the first time in my life (I think), and in the seven years in particular since I started seeing lung doctors, that I had been given the seal of approval: “Hey, man. It may never get better … but probably won’t get worse until you’re much, much older.”
Imagine: your lungs like an upside-down tree. Your trachea is the trunk, your bronchial tubes are the big branches, your bronchi are the smaller branches, and they keep deviating out from that until you get to the leaves — which are the air sacs. My Asthma is almost 100% contained within the twigs. My leaves are green and lush (my Oxygen concentration is at 98–99%, which is normal, and, also, this means I, again, do not have emphysema) and the branches are all healthy and thriving.
And there is more good news. My Asthmatic coughing has subsided and been replaced by the more subtle weak cough caused by laryngopharyngeal reflux disease, caused by the inhaled corticosteroids that I use to keep the Asthma at bay. It’s caused by stomach acid leaking into the top of the trachea. This is far less serious.
I have no wheezing. I haven’t had an honest-to-god Asthma attack — I should asterisk this with a bold when I have been able to afford my medicine and take it regularly, ahem, summer of 2012 — since 2002. I have Advair (2002–2014) and Symbicort (2014-present) to thank for that. The attacks I have are so mild and short-lived that they do not even require me using Albuterol, which is just one of the many drugs I’ve taken to beat my Asthma back. Maybe tens of thousands of puffs in my lifetime.
The small airways are where Symbicort has its limits. The particles are too large to reach into the small airways. Imagine trying to shove an African Elephant into your bathroom. And so that’s where the fire still burns. This manifests itself in me getting winded walking up stairs, or doing more than 15 seconds of CrossFit, or bending over to tie my shoes (my spare tire around my waist doesn’t help with that, either).
But the fire is contained. A controlled burn. One that my doctor seems totally convinced I can live with for reasons I’ll get into later.
Dymista, my nasal spray, has essentially eliminated my allergies — aside from shots of Fireball, which made me sneeze uncontrollably for three minutes. And that’s when I quit Fireball. Not because of asthma, but because I’m not fucking 24 anymore.
Singulair (which is a pill and so I often forget to take it) has been a long run’s best friend — it keeps my small airways open juuuuuuust enough to keep me from running out of breath (too quickly) but not enough to notice in day-to-day life.
So. About that running … there is no doubt running has helped bring me back from the brink. Since 2014, I’ve run 13 (!!!) half-marathons, a 10-mile race, and five 10Ks. I’ve also biked 50 miles twice … yet those are just the races.
All that has done something magical — it has taken my lung capacity to new heights. In October 2012, my IC (the sum of the amount of air I can breathe in and out and the amount of air trapped in my small airways) was 72% of normal. In October 2019, it stands at 105%.
I can breathe out, in sum total, a 100% normal amount of air. It takes me a while — again, because of my small airways — but it gets out there. Because I run, I have lung capacity, which allows me to run farther, which allows me to breathe more air in and out. My lungs are not perfect, but they’re operating — knock on wood and/or lung tissue — perfectly normally … at least by my standards.
And, you know what else has helped? Singing. Anyone who has heard me sing knows how loud, how long, and how intense I can hold a note. There isn’t a soul alive with (air-quotes) “my lungs” who could be able to do all that if the air wasn’t there. The basic numbers say it isn’t possible. But now we know it is.
There are some medicines I can take that will dig deeper into my lungs and destroy the fire in the small airways — there’s prednisone (not optimal long-term because holy god the side-effects like bone atrophy and organ failure), I could take a crazy dose of singulair (not recommended because of drowsiness), or I could try new drugs just released from U.S. clinical trials like Qvar or Alvesco. But I don’t need to.
In seven years, my small airways haven’t gotten any worse. And there are new drugs in clinical trials that could be the magic bullet to fix the entire airway — not just the big and medium stuff. The hope is out there that in short bursts my lungs could function like a normal pair. Maybe. If not, well … who knows.
This past Sunday, I ran 13 miles. Again. For a race. To prepare for a marathon. My second. My immunologist thinks I’m fucking insane.
“With the numbers you have on this paper, you should be hyperventilating, and taking your rescue inhaler six times a day, and in the ER all the time.” He paused. “These numbers don’t tell the whole story.”
They don’t. Because since I started running long distances in 2014, my resting heart rate dropped 31 BPM. I’ve lost 45 pounds. And my lungs — well, most of them, anyway — have opened up. They’re not losing steam at inopportune times. They’re not degenerating. They’re healthy-ish. They’re (am I jinxing myself here?) normal-ish.
Who knows where I’ll be later in life. Could my asthma — now finally beaten to a hapless shell of its former self with a cocktail of nasal sprays and inhaled steroids and intense cardio endurance training — have finally lost the war its been fighting so well for so long?
It’s too tantalizing to think. And, well, wrong. I found out not long ago I have an IgG deficiency. I don’t make enough of an antibody to guard against respiratory infections. As it turns out, it wasn’t exercise or allergies that ruined my lungs … I’ve had a low-grade lower-respiratory infection in my small airways my entire life, and it’s never gone away.
But I’m breathing. And as long as I can do that, well, I’m going to keep fighting the good fight.
On Christmas in 2007, my mom bought me what should have been a gag gift, but for me it 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 was 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 — should someone ever feel compelled to think my genes are worth passing on to their kid, too — is going to love cuddling up to it at night … even if the tyke turns out just as asthmatic as the father did.
I look forward to one day telling my child (should I actually have one) everything you just read above and more; a series of bedtime stories that I hope one day inspires the little one to follow the dreams that will await her during her 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.
John Gorman. One functional lung. 17 years of soccer. 13 half-marathons. One full marathon. In 2016, I was given 2-to-5 years left. I’ve made it three. I’m going to make it two more just to drive by that clinic and flip everyone the bird. Yeah, I’m petty. It’s fine … I’ll sob and hug them after.
37 solid years. All the races. And I’m fucking glowing and glistening in the sun … as always. Not bad for a kid who couldn’t even play outside.