I was twenty-nine years old when the doctor gave me three-to-five years to live. I had a rare genetic illness called Alpha-1 Antitrypsin Deficiency that, in it’s worst form, caused early-onset emphysema. I had the worst form. A lung transplant could prolong my life, I was told, but it was a very risky with a mortality rate of around 80%, five years after the operation, and an eventual failure rate of 100%. Not to mention that the lung transplant was far from a cure: with the associated medications, lifestyle changes, a certainty of organ rejection, and still-present disability looming over transplant recipients, it is often described as trading one chronic illness for another.
There was no possible happy ending to my story. One way or another, my illness was going to cut my life short.
It was June, 2002 –over eighteen years ago– that I had to start trying to wrap my head around that fact. My children (now grown college students) were infants. Looking back on my twenty-nine year-old self from the perspective of the forty-seven year-old man I am today, it feels like I was not much more than an infant myself. In the time that has elapsed between then and now, I lived a life and tried to realize some dreams. I had highs and lows, successes and failures, wins and losses that I could not have imagined, sitting there in the doctor’s office, eighteen years ago.
And now it’s all coming to an end.
“Three-to-five years” might have proved to be spectacularly pessimistic nearly two decades ago, but today it is optimistic to the point of near-ridiculousness. My lungs function at around 18% of their predicted capacity. I am continuously on supplemental oxygen and require multiple inhalers and breathing treatments every day, just to keep moving. Even with those, I don’t do too well. I can walk about twenty feet over flat ground before I get so winded I have to stop. Unloading the dishwasher, cooking a meal, tying my shoes, showering, brushing my teeth –all leave me gasping for breath the way you might after holding your breath underwater for two minutes. A common cold or flu often sends me to the ICU and sends panic and terror ripping through my brain like a wildfire. It feels exactly like drowning on air, fighting to suck in breaths that do you no good while sympathetic but useless people stand around and watch you die.
A couple of years ago, during a hospital stay, I was seized by a coughing fit. I was able to bring up the congestion just far enough to completely block my airway, but no further. There I was, feet over the side of a hospital bed, 10 feet from the nurses station, silently choking to death, hot panic moving my limbs independent of any conscious direction on my part. I wound up on the floor, on my hands and knees, spinning silently in circles, like a dog chasing its own tail, because when you can’t breathe your body takes over and tries to get you away. No one remains immobile when they’re asphyxiating. I still don’t know how I cleared my airway, but I remember lying on the floor for minutes afterward in a pool of my own spit and snot and vomit, sobbing. The staff had been alerted by the various monitors I was wearing, but couldn’t do anything once they got there except watch me convulse on the floor and fight to breathe. A nurse knelt on the floor beside me, rubbing and patting my back, the way one does with a sick child.
“Oh, honey.” She kept repeating softly to me, like a mother.
I have spent the last two years trying to qualify for placement on the lung transplant list, even though I am not a good candidate for transplant. I was rejected for placement in January, 2019 and given a list of things that required treatment before I would meet the criteria for listing. It includes behavioral changes, mental health treatment, extensive dental work, and the treatment of several systemic genetic ailments that have plagued me my entire life. My own body, temperament, social circumstances, and psychology are all barriers to transplant.
If I manage to successfully change who and what I am, I might be able to convince the transplant committee I’m a better candidate than I actually am and manage to get listed some time next year. Leaving alone that to do so would screw an actual qualified candidate out of a very rare set of lungs, I’m not sure what benefits I would see. Even after listing, there are no guarantees, and I might very well undergo all the treatments and lifestyle changes and deprivations required and still die waiting for transplant. Or during the surgery. Or shortly after. Even a successful transplant would likely grant me an extension on my life of less than ten years, and most of that filled with its own sort of disability and medical challenges and restrictions.
A lung transplant isn’t something you want, it’s just the least bad of two terrible options. A few years ago it was far enough out on the horizon that I didn’t really have to think about it. Now it’s close enough that it knots my guts every waking minute. Trying to qualify for placement has become a bigger stressor in my life than the disease itself, and has forced me into a life of isolation and austerity. A large part of me wants to just walk away from the transplant process and let the disease take its natural course, but the memories of terror-filled moments where I’m desperate to draw a breath flood in and drive me forward toward this goal I don’t really want and won’t likely qualify for.
Like most people with severe disability and terminal illness, I think about suicide a lot. It used to be a general sort of “what-if-I-have-to” mental exercise –a way to peek ever the lip of the abyss without walking up to the edge. Now it’s harder to think of it in the abstract. I spend hours sitting on the edge of the abyss, feet dangling over the yawning mouth of eternity, weighing the relative merits of various methods, trying to imagine the circumstances under which I’d swallow the pills or squeeze the trigger. It doesn’t take much imagination. When the alternative is slow strangulation, nearly anything else seems preferable.
Also like a lot of people with terminal illness and disability, I find myself utterly alone at the end. Five years ago I lived in a different town, was engaged to the love of my life, had roots in a community, had solid connections and friendships I believed I could count on. Now I’m standing here alone, a solitary figure among the smoldering ruins of what used to be a life, but is now just an exercise in dogged perseverance.
I awake every morning alone on the couch in my living room. I lie there all day, watching normal people live their lives through my windows, as the sun traces it’s daily arc across the sky. In the afternoon I eat my one meal a day (if I eat any more often, breathing becomes tortuously hard), then wait for the sun to extinguish itself in the Pacific so I can fall asleep on my couch again. I never see other people. I have no human connection in my life. There is no one to hold me at night when the cold fear in my stomach builds into a knot of angry bees that make me feel as though I’m going to snap in half from the strain. No kind words, no soft touch at my cheek to brush away the tears that are barely held back these days. Just me looking into the abyss and the abyss looking back.
I wonder why I’m doing all this. What is it for? Certainly many of the people who know me would like me around as long as possible, but they aren’t the ones who have to experience “as long as possible.” My life has become a misery that I endure, not something that I enjoy, and I have to find something that I connect to that gives my life some sort of meaning. This blog is a result of that.
If nothing else, I need to document this for others who are out there, suffering alone, so that maybe, some day, someone else out there will type “dying alone with emphysema” into Google and find not clinical papers written by doctors, as I did, but instead something written by someone who was living it, as they are, and faced all of the terrifying, daunting challenges they face. Maybe they’ll come here and feel less alone, if not less scared.
But at the end of the day, this is for me. This is my cosmic message-in-a-bottle, my way of tossing a piece of myself out into the Universe as a way to say, “This is who I was. This is what it was like to live my life. This is what I was all about.” It’s a way to motivate myself to get up off the couch every day, if only for a little bit, and to do something worthwhile with the days I have left.
I hope some others find something useful in these pages. I hope those who know me find something of myself that they can hold onto after I am gone. I hope that, maybe, I can find a way to come to terms with what is happening to me and find some peace before I go. I hope that’s not too much to ask.
Bless you my Friend…love you.
I can’t wait to read what else you share. I think of you every day!
Brian it feels as though your words are ripping my heart right out of my chest. I love you so much and Pray for you regularly. I wish I could reach out and help you but the most I can do is the best I can do, keep lifting you up to God asking him to help you according to His will. I love you Brian.
Thanks for sharing.I will be seeing you soon my friend. Around October 5th. Love and miss you buddy. Hang in there we’re going to make it so you get that transplant. May he watch over you and protect and give you comfor tGod Bless you my friend
. See you soon Buddy.
I have just found your blog after idly Googling your name after it found it’s way into my mind years after I’d last thought of it. About 15 years ago I was an avid reader (and far less prolific contributor) to the old .org of a certain musician. Anyway, I always enjoyed your contributions, and it turns out I never forgot who you were. I just want to say that you write beautifully, and this blog will surely leave a worthwhile and valuable legacy for those suffering too. If your time here is indeed short at this point (and I sincerely hope you are able to both extend your life and find some quality of it somehow) you’ll not be forgotten, even by many people you’ll never meet. Similarly, even when you’re alone, as you so vividly describe in this post, you will be in my thoughts.
Love you, man.
Brian…I am so blessed to have found your words. Thank you for writing them.
Thank you so much for reading them!
Very heart wrenching! I am a ZZ alpha. Diagnosed 5 years ago at age 75. Thank goodness for Nation Jewish Hospital in Denver and the Alpha World for support.
Thanks for reading! Sorry to hear about your diagnosis, but glad you’re getting good care!
I am so touched by your story! I don’t know how to respond other than to pray for you and offer support. I know that may not be much at this time I just felt after reading your story I needed to reach out!