Categories
Journal

Get Up And Do It Anyway

One of the most frustrating things about my disease is how unpredictably variable it is. I never know, day-to-day, how my breathing is going to be. A few weeks ago things were relatively easy and a positive outlook was easy to maintain. I could even summon some optimism about the future. The last week-and-a-half, things have been viciously hard. Walking just a few steps leaves me gasping for long minutes afterward. Something as insignificant as brushing my teeth is absolutely panic-inducing and leaves me trembling. Showering feels like being water-boarded. Even the smallest tasks leave me exhausted. It’s so easy to give in to despair; to want to quit; to want it all to stop; to want all this excruciatingly hard work to be over.

But then I remember all the other times when it was so hard I wanted to give up: that Christmas in a wheelchair, watching cancer take my hospital roommates, one by one, as my body tore itself open like an over-ripe banana; another Christmas in another hospital, staring at the grain of the tile, an inch from my eye, suffocating and certain it was the last thing I’d ever see; another hospital bed and a doctor telling me that if I didn’t start fighting, I was going on a ventilator that night, and probably never coming off.

Dozens of times more, I’ve wanted to give up, because this disease makes everything so goddamn hard. Hard like it’s been the last week-and-a-half.

But I don’t give up. I breath in and out, as best I can, and tell myself to make it to the next second, then the next minute. Minutes build hours, hours build days, and if you put enough days together, things will get better than they are now.

A lot of us –maybe most of us– are going through hard times of one sort or another. None of us know what each new day will bring. If your today is worse than your yesterday, dig in and fight for tomorrow, and the tomorrow after that, until things get better –and things will get better– so don’t quit. Build those seconds into minutes, into hours, into days. Accept that it’s hard. Accept that it’s excruciating. Accept that it’s terrifying.

Then get up and do it anyway.

Categories
Journal

The Comforting Roar of Eternity

Sometimes, usually at night, when the tide comes in, I’ll be sitting here in my living room, windows open, watching TV, wondering,

“What the hell is that roaring noise?”

Then I remember it’s the Pacific, just over the berm, clawing at the beach, just like it has for 200 million years –long before any of my kind were around to hear it. It puts me in my place, this ocean.

So I mute the TV and listen to the closest I’ll ever get to eternity whisper in my ear.

“You don’t matter.” It says. “You are nothing. This is all nothing. None of this means anything. I will be clawing at this beach 200 million years from now, long after your kind are gone.”

There are people I know who would consider this discouraging, or terrifying, or even heresy or blasphemy. But for me? It is a comfort like a mother’s embrace.

“It’s all been OK.” It says. “All you’ve worried about, and fretted over, and tortured yourself because of during long nights of doubt? It’s as insignificant as beach sand. It all gets washed away, eventually.”

And some part of me wishes that it weren’t true –that I’d mattered somehow. But I’ve seen enough of death to know that the ocean isn’t lying.

We fade within two generations, often sooner. We are sparks from a bonfire: beautiful, blazing, unique, and soon forgotten.

But that’s OK. It’s OK to be a spark that is born, rises, touches nothing, and fades away. That is the cycle. That is life.

That’s the truth the Pacific knows.

And sometimes, when I mute my TV, it whispers it in my ear.

Categories
Memoir

Drowning On Air

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.