Passover

I won’t post pictures, because I’m firm in my belief that most adult males –especially those whose feet have spent many years in combat boots– have no business exposing their toes to polite society, but trust me when I tell you that my feet are grotesquely swolen.

My left foot is much worse than my right –a dead giveaway of the pulmonary hypertension and the heart failure that goes along with my disease. For years, as soon as doctors or nurses would hear of my emphysema, they would immediately start poking around my feet. I always felt so lucky, so gratified, to be able to respond that I didn’t have any swelling.

I also didn’t have much congestion. I would read horror stories about end-stage emphysema patients who battled constant congestion and obstruction, fighting for every breath –drinking pineapple juice for hours a day in a vain attempt at relief.

The thing was, in most of those stories, their lung function was better than mine.

In emphysema patients, the number you’re most concerned with is the Forced Expiratory Volume, or FEV1. It’s a measurement of how much air you can clear from your lungs in a given amount of seconds. Contrary to popular belief, emphysema isn’t about not being able to get oxygen in, rather it’s about not being able to breathe air out and clear the CO2 that builds up. Your lungs are like a balloon that you can’t empty, and thus can’t fill with new, oxygenated air.

Your ability to clear your lungs is measured as an expected value, based on what the average healthy person of your age would be able to do.

For the last 10 years, my FEV1 has never been higher than 23%. I am currently around 14%. You can basically think of that as my lungs function at 14% of what they should, for my age.

But most patients –and doctors– shorten all of that until the FEV1 simply means “lung function”, regardless of age, so that people just compare their raw FEV1 number as if it were a hard metric of what you could expect

For years I would measure myself against others who had my disease based solely on FEV1. I was at 23%. Someone else was at 30%, but dealing with never-ending congestion and hypertension. I dealt with neither. I concluded that, like the Israelites in Egypt, I had somehow been passed over. I heard horror stories about what this disease was from people whose FEV1 numbers were far better than my own, and falsely concluded that I had been spared.

What I failed to take into account was age.

Most emphysema sufferers are elderly. The FEV is adjusted for age. Their 30% was not at all applicable to my 23%. Most 40-year-olds do not have emphysema. I was a statistical outlier.

I thought I had skipped out on the hypertension and the congestion and the burning, ripping pain of it all. But I hadn’t. It just hadn’t happened yet.

And now it has.

My left foot is so much bigger than my right. Every time I inhale it sounds like drawing chalk across a slate. When I cough I sound like a seal barking. I had deluded myself that I was immune to it all, but in the last six months, every month brings a new, cruel reminder that –not only will I not beat this– but that I am fast running out of time.

So I hope I get some stories written down before I go. I hope there is something meaningful left behind. I hope that, when it all comes to a head, and then passes like a summer storm, that there will be something left of me that was worthwhile.

I hope I will have left something that justifies all this suffering; some potentially profound beauty that outweighs all this tragedy.

But even if there isn’t–even if I leave nothing of substance, and am never remembered beyond the memorial service– I hope that those of you who have known me have been touched enough by my existence that you have found some happy interaction, or token, or memory, that is precious enough that you will have judged my life worthwhile.

And if not, at least let it be said that I never wore sandals in public.

Miracle Baby

I was born at about 10:30 P.M. on January 21st, 1973 –less than 24 hours before the United States Supreme Court handed down their landmark decision on the case of Roe vs. Wade.

No one knew I was a miracle baby there. No one prayed over me, or prophesied over me, or spoke in strange tongues while grasping my scalp with hot, sweaty palms. I was just a weird kid who liked Phil Collins and Motown when everyone else liked Def Leppard and the Beastie Boys, and I found that was easier to live with. My mom wasn’t ready to let me leave the church, however –at least not as long as I lived under her roof. So I struggled through thrice-weekly services –once on Wednesday, twice on Sunday– for a couple of years.

I was three months premature, weighed just over three pounds, and was less than a foot long. I’d been a breech baby –meaning I was born feet-first– and the umbilical cord had been wrapped around my neck, cutting off my oxygen supply for quite some time. The doctors told my parents that I had very little chance at survival, and cautioned that if I did, I would certainly be special needs, severely brain damaged, and would require life-long care. To make matters worse, a feeding tube was incorrectly inserted into my lung instead of my stomach, so for the first few weeks of my young life I battled pneumonia.

My parents ignored the doctor’s dire predictions and prognoses and fought to make sure that I got the best care available to me in St Louis, Missouri in 1973.

And I pulled through.

I was the second of my mother’s children to do so.

My older sister, born in June of ’71, was also three months premature, just under three pounds, and faced similar health challenges. She also pulled through.

Not long after we were born, my parents moved several hours south to a little town called Poplar Bluff, near the Missouri/Arkansas border, around where they had both grown up and where they had been married. There, my mother found a church whose congregation couldn’t seem to get enough of the story of her miracle babies.

My sister and I were enrolled in the Christian school that our church ran, and soon all of the teachers knew our story. I don’t really remember a time that we weren’t held up as an example of God’s love and mercy. Teachers would tell my story to other kids in class while I squirmed uncomfortably at my desk. My sister and I would be called before church congregations and school assemblies to have people laud us and prophesy over over us and speak in tongues and exclaim about the big plans God had in store for us, and enumerate all the reasons he’d saved us.

In the late 70’s and very early 80’s, I don’t recall this ever being more than run-of-the-mill evangelism –“Come look at the Miracle Babies, saved by the Lord of Hosts!”– but something began to happen in the mid-80’s, after Reagan’s second term: abortion became a very big deal in the Evangelical church, and our story came to represent something very different to people, and they weren’t shy about telling me so.

I remember being used as an object lesson in front of a class.

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Just the Tip

I use Uber Eats at least once a day. I don’t really have a choice in the matter –I no longer drive or leave the house, and Lucy and I still need to eat, so I spend a lot of time on the app.

I make a point of looking at my driver’s profiles –not because I worry about their ratings. I don’t. People are dicks to service workers, and downgrade them over the smallest things, so I pay no attention to customer satisfaction. Instead, I’m looking at why they deliver. Often, the reasons tug at my heart: “I deliver to buy my kids food”; “I deliver to pay my medical insurance”; “I deliver to pay my student loans”.

Never is it “I deliver because I enjoy driving” or “I deliver because I enjoy smelling food I can’t afford to eat.”

My former wife would say I’m being used by Uber and their app that plays on my sympathy, for tips.

She loves to tell the story of a little girl we once encountered outside a record store in a run-down strip mall in Fayetteville, North Carolina. She was 8 or 9 years old and wore a filthy, fake rabbit fur coat. She had smudges of dirt on her face and was selling boxes of cold Krispy Kreme glazed donuts. I could have driven a few blocks away and got them fresh and hot off the conveyor, and for less than what the little girl was asking, but, much to my ex-wife’s dismay, I caved and bought four boxes –all she was carrying.

“You’re such a softie.” She said, on the way to the car. “Don’t you know it’s a scam?”

“I don’t care.” I said.

She gawked at my gullible stupidity. Why would I give away something that was mine to someone who’d done nothing to earn it but look sad? She couldn’t understand it.

As we were driving out of the parking lot, we were passed by a car at least ten years newer than ours, the hatchback stacked floor-to-ceiling with boxes of Krispy Kremes. In the back seat sat the little girl in her rabbit fur coat, in the front sat her parents, well dressed and fed, it would seem.

“See!?” Said my ex. “I told you! It was a scam! I bet you feel stupid now!”

For years she told the story at family gatherings. “What a sap I married!” she seemed to say.

But I was never ashamed, never embarrassed. Could I go back in time, I’d still give that little girl in the dirty fake-fur coat the money. It wasn’t about how much they needed it to me.

It was about how much I was willing to help.

I hope I never lose the willingness to help.

Tonight’s driver’s reason for delivering is:

Divine Indifference

When I was a kid, I could be assured of several sources or reading material in my parent’s bathroom: The Reader’s Digest, The National Enquirer, several catalogs, and –later– a volume of essays and short stories by Mark Twain. He was a hero in my home state of Missouri, and I recall vividly when my family made a pilgrimage to his boyhood home in Hannibal.

The book showed up sometime after I was ten and stayed until I was in high school. I don’t know why the book stayed there so long –my dad (the least religious person in the house back then), hated it. He called it sacrilegious and blasphemous. But it sat there just the same, calling to me.

I would crack it open and feel a rush of guilt as intense (if less salacious) as that I’d feel when perusing the lingerie section of the Montgomery Ward catalog.

I loved his unapologetic, withering critiques of religion and religiosity; his courageous and unbending attacks on social and religious norms. The things that horrified my dad thrilled me and made me question my surroundings and upbringing.

Some people love Mark Twain because they know him for Tow Sawyer and schmaltzy Americana.

I love Mark Twain because he was the first atheist I ever read, and he lit a fire in me. Some people’s Mark Twain is an inoffensive tale-teller, spinning yarns about jumping frogs and painting fences and pirate treasure and river rafts.

My Mark Twain? He’s punk rock. He said “It’s all bullshit, and we should tear it down.”

If there was ever a man who endorsed a wall of separation between Church and State, it was him.

“So much blood has been shed by the Church because of an omission from the Gospel: ‘Ye shall be indifferent as to what your neighbor’s religion is.’ Not merely tolerant of it, but indifferent to it. Divinity is claimed for many religions; but no religion is great enough or divine enough to add that new law to its code.”
-Mark Twain