I Knew My Husband Was Terminally Ill — But I Married Him Anyway

Photo: Courtesy of the author
marriage
Heartbreak, Love

If we only had two weeks together, then I wanted those two weeks.

Like so many Gen Xers, I'd spent a decade putting hopeful profiles up on dating websites. Paying for eHarmony from time to time. Answering messages and hoping against hope.

But they say it's when you give up that your heart's desire will come to you. And that's what happened for me. 

I was almost 32 years old. My two puppies and I had been happily rattling around in our big condo for the past year. I'd given up waiting for Mr. Right and decided to just live a happy single life.

And we were blissfully happy, the puppies and I. Loneliness was anathema. There was so much to do!

But after a year, a fly crept into my ointment. The condo was a little too big. A little too empty. A little too quiet. And the puppies definitely needed some training. (Boy, did they need training.)

Truth be told, I'd ignored my many profiles on singles websites for the past year. But suddenly, one of them crackled to life. I had mail! A retired engineer. Divorced. Three teenage kids. Not exactly the ideal situation, but what the heck?

Being something of a geek, I love engineers. And I was lonely. So I messaged him back. We IMed a few times and then he sent me an email. His first email. He wasn't just retired; he was disabled. And he wasn't just disabled; he was going to die.

Pulmonary Alveolar Proteinosis (PAP) is an auto-immune disease causing the natural protective protein we all have coating the interior of our lungs to be produced in copious amounts, preventing the transmission of oxygen to the alveoli.

Cause: Unknown.

Treatments: Iffy, prohibitively expensive and dangerous.

Prognosis: Death. No known cures.

My heart fell as I quickly read his email on my way out the door to my Saturday dance lesson. "Well," I thought, "another near miss."

But I was lonely. And he was nice. I meant to cut him off because, well, finding the "perfect man" and having the "perfect life" had been drilled into my head for years by my parents. But we kept emailing and exchanged phone numbers.

On a never-to-be-forgotten Saturday, he called me. Our first phone call. I hate talking on the phone. He hates talking on the phone. But this? This was different. Our call lasted for six hours.

After that, we were on the phone constantly. He called to wake me up each morning. We talked as I got ready for work. On my lunch hour. And from the moment I left work until we fell asleep, exhausted but still talking at 2 AM. One time, he fell asleep mid-sentence. I listened to the sound of his wheezy snap-crackle-pop breathing, wishing he was there beside me, instead of hundreds of miles away.

Within three weeks, I'd decided to marry him. I didn't care that he had PAP. I didn't care that it could kill him in the next two minutes, two months or two decades. If we only had two weeks together, then I wanted those two weeks.

It wasn't that I wanted to marry him. It was that I couldn't NOT marry him.

He was compelling. We had geeky chemistry. I loved him. But perhaps even more importantly, I liked him so darn much. Whatever time he had left, I wanted to spend it with him.

Then the day came when we met in person: April 7th, 2012. I'll never forget jumping out of my car and running to him. And that was the best, the longest, the most amazing hug in the history of mankind.

That was our one date. April 7th. He proposed on April 8th and we said our "I do's" on April 21st. Can it be that was over four years ago? They say that if the time flies, you know you're married to the right person.

Michael still has PAP. Nothing's changed. If anything, it's getting worse. When we first married, he coughed up the excess lung protein once or twice a month. Every time the protein came up, I cheered him on as he coughed, retched and gagged, his head buried in a wastebasket. Each thick, sticky glob of protein that came up bought us more time together.

Four years later, it's slowly gotten worse. Now, he wakes abruptly in the night, lurches to a sitting position in his hospital bed, coughing up protein. This goes on day and night. I make sure he's still breathing every time I get up to use the bathroom at night. It never stops.

Last Memorial Day, he almost died. His lung tissue wasn't exchanging CO2 for oxygen. With quick thinking, he cranked up the oxygen concentrator and ODed on 8L of pure oxygen. It saved his life. I rushed him to the hospital and they all but threw him out. They didn't give a damn.

Sure, the details of our lives aren't perfect. But Michael is perfect for me.

We try to look on the bright side. Because of PAP, Michael doesn't have to go off to an office every day. Because of PAP, he can't lose his paycheck. Because of PAP, we're together 24/7. And because of PAP, I got to realize my dream of freelancing from home.

Sure, it's been tough. It's still tough. It'll probably get tougher. But after all, at some point in their lives, most people get sick. Heart attack. Cancer. And their husband or wife is there for them to the bitter end.

The only difference is that I knew what would kill my husband before we married. Still, I hold out hope he'll die with PAP and not from PAP.

Shakespeare, of course, said it best:

Love is not love
Which alters when it alteration finds,
Or bends with the remover to remove:
O, no! it is an ever-fixed mark,
That looks on tempests and is never shaken;...
Love's not Time's fool, though rosy lips and cheeks
Within his bending sickle’s compass come;
Love alters not with his brief hours and weeks,
But bears it out even to the edge of doom.
If this be error, and upon me prov'd,
I never writ, nor no man ever lov'd.

.......

If our love-story brought a tear to your eye, your contribution of any amount to the fund to Help Michael Breathe would be more appreciated than you'll ever know.

 

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