My breath was shallow and rapid, the rasping attempts futile. I needed oxygen.

I leaned forward on the desk, fighting, focusing against my body’s panic as I pumped my stomach, forcing my diaphragm in, out, in, out. Nothing helped.

I couldn’t muster the breath to phone for help. I knew my girlfriend was at work, at her desk as always. I reached to the computer and logged onto the Web.

The keys clicked as my heart rate climbed. “Can’t breathe call 911.”

My cell phone rang. I opened it and her frantic questions elicited one grueling word. “Call.”

I slipped from the chair and sank to the floor as everything closed in. My dog came investigating the noise, then stood beside me worriedly licking my hand and arm.

“Is this how it happens?” I wondered. “This is how I die?”

… 

You make the best of what you’re given, hacking a path through available terrain. For me, in my time and place, that was a living in the bar and restaurant business.

My health was never a concern. I was an active kid, with a love of the outdoors and sports that stayed with me through college and into adulthood. In my early 30s, I gave up the automobile altogether for a bit to feed my hunger for biking. I would commute on the streets and hit the trails in my spare time. I loved riding, the wind, the sweat, the ache and ardor.

The caveat was my tobacco habit. Like all addicts, I rationalized that I would quit soon enough but still felt things were evened out by my exercise. My blood pressure was low and I still bore the appearance of someone ten years my junior.

In my mid-30s, my work schedule changed and I started using a car more until after a while I was hardly biking anymore. I was just too busy. It was then I noticed my lungs losing effectiveness and chalked it up solely to my lack of exercise.

By then, fate had landed me in the kitchen of a locally renowned chef and restauranteur, someone who had spurred a local culinary renaissance and trained most of the town’s hottest new chefs. Initially, all I wanted to do was finish a novel in progress, then market it in hopes of building funds to relocate. But my new boss was highly flattering of my performance, telling me I was as good as anyone he ever employed.

Slowly, I let the literary vision ebb. As I built contacts and a base of loyal customers, I formulated an idea for finding backers and opening my own place like his previous proteges. In that field, health insurance was a pipe dream that would have to wait until I had my entrepreneurial feet under me. When you owned a business, that was when you could afford it.

The restauranteur developed his own health issues and soon closed up shop. I went through a couple of other upscale jobs while my respiratory function kept degrading. Eventually, it began to impair me at work. I would find myself out of breath in the middle of a rush or growing light-headed in the 110º heat on the line.

I quit smoking but my breathing didn’t improve. I had trouble walking more than a couple hundred feet and the simplest tasks became taxing. I feared the worst and needed answers. A visit to a pulmonologist confirmed my suspicions. It was emphysema.

In that initial visit, two reactions from the medical staff stuck with me. First, there was the strange expression from the receptionist when I told her I would pay in full on the spot, then pulled $500 from my pocket and slid it to her.

The other was the puzzlement from the doctor. Lung function tests revealed incredibly low levels. My forced-expiratory-volume-in-one second (FEV1) was 12% of what it should be for someone my age yet there was no “clubbing” in my fingers, no blueness under the nails and my blood saturation levels were just barely below normal. The doctor couldn’t understand how I was functioning.

It was also puzzling that I developed the disease in my 30s, since the condition normally doesn’t progress to that point until victims are twice my age. He had a hunch.

Bloodwork confirmed I had Alpha-1 Antiptrypsin deficiency. My body didn’t produce a normal proteinase inhibitor that balanced an enzyme (neutrophil elastase) used to destroy bacteria. Without Alpha-1, the enzyme corroded my alveolar walls, snipping proteins and robbing my lungs of elasticity. The walls were still gas permeable but they couldn’t expand or contract normally.

They could give me medicine to make breathing easier but without augmentation therapy to replace the missing Alpha-1, my lungs would continue to deteriorate at an accelerated rate. The treatment involved weekly infusions of Alpha-1 derived from donated plasma. It was costly and continual.

Problem was, with my diagnosis, I wouldn’t be able to get insurance to cover it since it was then officially a pre-existing condition. Even the medicine to aid my breathing, a daily regimen of steroids that acted as broncho-dilators and anti-inflammatories, were prohibitively expensive. The doctor’s staff squirreled away samples from the pharmaceutical reps and slipped them to me every month.

But the augmentation couldn’t be handled like that. My doctor had an idea. “Look, you can’t cook anymore, right?” he said. “I think with that and your test numbers, you could qualify for disability so you could get Medicare. They’d have to give you the treatments.”

It didn’t matter whether I was capable of deskwork or not. What mattered was getting me on an infusion program without which I would die soon.

I had to start the approval process as soon as possible, something that normally takes about two years. One cynical theory I heard advanced was that the two-year wait is to see whether you’ll kick the bucket in that period or not, whether they can save every dime possible.

But during that two years, I would be dependent on the samples from the nurses because the out-of-pocket costs were so high.

… 

I heard the front door open and my girlfriend’s steps hammering across the wooden floor. She was frantic, putting the dog and cats away before the emergency techs came in. They eventually got me oxygen and an albuterol treatment then monitored me for a bit. My breathing slowed but my blood oxygen levels were still below usual.

“You need to get to the hospital,” one tech said. “Now, if we take you, it’s going to cost $500. If you can get to your car, you can save the money.” They knew I had no insurance and a chronic disease.

I took tentative steps, then had to stop. I would need the stretcher. They trundled me out as the neighbors all craned and whispered.

Inside the ER, I finally began to feel better. A couple of injections later, I felt fine.

One nurse stood over me asking questions and scrawling on a clipboard. My lack of insurance made no difference for admission.

“Are you allergic to anything?” she asked.

“Country music,” I quipped, pulling out an old Buddy Rich joke.

She laughed and said it was good sign that I had a sense of humor. It wasn’t so funny when they took a draw for my arterial gasses, an excruciating thing that began not with “You’re going to feel a pinch” but with “This is going to hurt.”

The cause of the attack was procrastination. I ran out of an inhaled medication over the weekend and was waiting for Monday to get another surreptitious sample from the doctor’s office. The lack of medicine was enough to cause an asthmatic attack. On top of the emphysema, it was dangerous.

I was in the hospital for three days. The total came to over $8,000.

After release, I worked with a liaison at the hospital to find financial help. Luckily, I stumbled across a local non-profit that gave one-time only aid to cases approved by a board. They had pity on me and paid the hospital bill but the ambulance and lab bills came out of my pocket.

The sole office employee for the foundation was a woman who had recently been diagnosed with fibromyalgia and had her own deep-seated worries flowing beneath our conversations. It wouldn’t be long before she would be seeking her own assistance.

… 

In 1999, my dog Lakota and I made a daylong, 10-mile hike through a nearby national forest. Four short years later I had to give up the restaurant business since I couldn’t handle the physical demands or exposure to inhalants.

I began work at a local public radio station. It was highly enjoyable but paid poorly.

I also found employ at a new local newspaper, a small alternative owned by someone I knew from years previous. Without my foot in that door, I likely never would have made their pages.

I finally qualified for Medicare and could leave the purloined samples for others in dire straits. My girlfriend married me but the insurance through her job was of no benefit.

My work at the newspaper gained notice when I picked up a few awards. It was common to encounter people who thought I was somehow living well due to local notoriety. The truth was that in order to continue to qualify for my disability, therefore having the insurance for the meds that keep my respiration even, that keep the augmentations that retard the destruction of my lungs, I can’t earn more than around $900 a month. Without my wife’s income, I wouldn’t be able to afford to live while still having the health care I need.

I'm on three inhalants and one infused drug. The inhalants – Spiriva, Advair and albuterol – keep my breathing comfortable in the steamiest region of the nation. Their annual out-of-pocket costs per year are $2,615.88, $3,983.88 and $1,499.88, respectively.

The infused drug is Zemaira, supplanting the Alpha-1 my body doesn't produce. It’s roughly $128,400 if paid out-of-pocket. 

Altogether, that's $136,499.64 out-of-pocket for meds every year. I have no idea the price of the weekly nurse visits to infuse the Zemaira. 

Were I to win a million dollars (after taxes) tomorrow and lose my disability qualification, thereby losing my insurance, the jackpot wouldn't even pay for a decade's worth of medication for me. 

That means my choices are to remain impoverished so I qualify for insurance for which I can't be excluded or to get a job making $150,000 annually just to be able to live at a minimal level. Were I in Canada, Britain, France or one of many other countries, this wouldn't be a question. Their medical systems would allow me to pursue a career like anyone else and not worry about health care. 

And still I hear the snide remarks from colleagues, family and acquaintances, wise cracks about the laziness and despicable uselessness of those on disability or who take part in our social safety net. I catch protestations about the welfare state and the leeches it breeds.

Granted, I’m biased but I think I’m useful, that I serve a purpose. I founded a cultural organization that has added value to our town, enriching lives, educating minds and bringing acclaim to long ignored artists in our midst. We’ve turned kids onto vocations and passions for artistry.

I’ve tried to say what needs to be said in print, to give voice to those who don’t have it. I’ve got a file filled with notes of gratitude from those about whom I’ve written. A story I penned resulted in an increase of aid to a homeless shelter.

Another story I developed and wrote tied together the actions of a corrupt state attorney general that has resulted in a federal investigation.

Meanwhile, my existence is only possible because of a version of a single-payer health care system demonized by those who benefit from my efforts.

… 

My lung function has improved to nearly 20%. I’m still not on supplemental oxygen but it will happen one day, most likely before I reach 60. Maybe. One thing apparent from all of this is that I was blessed with a remarkably and mysteriously resilient corpus.

To look at me, listen to me talk and watch my movements inside the house, you’d never know I was ill unless you noticed me pause my walking every 40 yards (depending on the weather) or how I have to catch my breath every time I bend over. Though I was once known for a ringing voice that could fill clubs sans amplification, I can barely sing and play the guitar simultaneously anymore.

When Lakota fell mortally ill at 15-years old, I couldn’t even pick her up and carry her to the veterinarian on that last night. And when she died, my lungs wouldn’t allow me to sob to the depths my heart sank. My breath was too shallow and I couldn’t draw the air.

My life expectancy has been hacked down. I’ll die at least a good decade before I would have otherwise. Still, I never questioned the illness, never wondered “Why me?” I know the universe isn’t unfair, just indifferent.

Emphysema is incurable and eventually fatal but I ultimately didn’t care. I once ran into a friend with the same disease and his wife asked me, “Aren’t you scared?” I just shrugged and said, “No, it won’t change anything except deny me valuing what life I have.” Fear is a prison.

One hundred years ago, I wouldn’t have made it this far and I’m already a decade older than most humans in history have ever reached. I’ve had my shot at life and created memories I’ll never regret. And as long as I can partake in art, in music, even as an observer, there’s more to be enjoyed. Life is between your ears.

That’s where I have to dwell. 

… 

After seeing what has become of the insurance business in the last decades, I have little doubt that if I had happened to have health insurance when I was diagnosed, the company would have found a way to cancel my policy. I would have been too costly over the long run.

The protestations about changes in our health care system are ridiculous. Public health and its resultant financial difficulties seem to me to be an aspect of the “general welfare” cited in the Constitution.

I also know that American culture has changed so much, greed and self-interest have become so central that it has eaten our collective soul. But it will change eventually, it’ll just take catastrophe to do so. Sooner or later, enough people will realize that everyone is considered a target of the insurance industry. Not partners, not consumers, but targets. At the same time they become prey for disease, they will also fill that role for the industry that seeks to profit from their misery. When enough discover it, things will change but there will be a lot of unnecessary suffering until then.

… 

Though I’ve adjusted, I still miss biking, hiking or just being able to take walks. I miss being able to go hear live music where I wish or even eat in certain restaurants because of the smoke.

I sometimes have dreams filled with activity, where I’m playing football again. Sometimes I’m just running down a street and the joy is overwhelming. My feet are light, my legs strong and the world rushes past.

In other dreams, I'm with Lakota again, loping like we once did across fields, just ecstasy and sunshine and all the crisp air we can pull in.