In Health

"We will shock the world by the depth of our ingratitude." -- Prince Felix of Schwarzberg

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I've found that it's usually the little things that are our undoing, the small details that go unnoticed or uncommented upon: the ruinous fine print; the subtle, seductive glance between a spouse and an admirer; the vows that seem so easy to keep that they are included almost as an afterthought.

We all understand why the "for worse" is in there, the "for poorer" and "in sickness." I think "for better" and "for richer" take a little bit more to understand, but we've all read of lottery winners destroyed by their sudden windfall, or by a successful couple finding the temptations of their new status tearing them apart.

But "in health?" I never saw that one coming.

I've always been the type of person that believes in preparation. It was ingrained in me by my mother; my father was a good man, one of the kindest and best I've ever met, but he could be flighty. I learned my arguably overdeveloped sense of compassion from him. "Kindness doesn't cost a thing, Nate," he'd say as we helped at a soup kitchen or to organize a clothing drive for our church.

From my mother, though, from the woman that always made sure that our household ran like clockwork, that everyone got to where they were supposed to be on time, that there was never a doubt about our family's solvency or safety, I received a deep appreciation for preparation. I've always been grateful to my parents for the gifts that they gave me, those twin virtues of preparation and compassion. Until a very dark time in my life, they stood me in good stead.

Before we were married, Chloe and I talked about the things that could happen in our marriage. We discussed what our vows would mean to us. We planned for how we would deal with a sudden turn in fortunes, for good or ill, about how we would deal with a need to move and leave our families behind, about how many children we wanted to have and when. We talked, especially, about infidelity and whether our marriage could survive it.

It's not that I mistrusted my wife, nor did she mistrust me. But she was an attractive woman, and I knew that she had many admirers. When we met in college, she was a runner; a star athlete, in fact. She had set a state record in the 5K in high school, and she was still an elite athlete. She wasn't the greatest beauty at the school; her face was more striking than anything else, and she spent her time worrying about race times rather than makeup or hair. But she more than made up for that with a long, lean, tanned and toned body, lovely green eyes, and naturally curly auburn hair.

I had no illusions about the kind of chances I had with her, but we became friends in our sophomore year. I know some guys are pointing and screaming, "friend zone," but I never thought of it that way. I had a number of female friends, and because I treated them as friends first, I also had no trouble in my dating life. Women seemed to appreciate that I comported myself as though they were actual human beings instead of potential conquests, and there's no marketing network quite like a group of female friends pulling for their single male buddy.

The transition that Chloe and I made from "just friends" to "friends with benefits" to "oh, I guess we're dating now" was pretty standard for college life. We were both dating someone else, we both broke up about the same time, and in commiserating, we started to look at each other in ways that we hadn't before. It wasn't some great romance, but it was good for us.

Great for us, actually. Despite our differences, or perhaps because of them, we quickly fell in love. Her drive inspired me to knuckle down in class; my compassion taught her how to be a more magnanimous winner and more gracious loser.

She wasn't as big of a believer in preparation as I was, focusing mostly on what she absolutely needed to do, but that was usually enough; you don't get up at four in the morning every morning to train without being willing to plan ahead. I joined her, albeit way, way, way behind her, and my fitness improved as a result.

The conversations that we had as we edged towards marriage, the ones about fidelity and vows and plans, were made easy once I demonstrated the importance of them to her. They fell into the "important enough to take seriously" domain then, like her training regimen. By the time we were married, a year out of college, everyone thought we'd be the couple that lasted to our golden anniversary and beyond.

What's the saying? Man plans, and God laughs?

Our marriage was excellent, for the most part. Our early friendship gave us an easy rapport, and the sex was great, due in no small part to her athleticism and my new stamina. We were experimental and passionate, and my tendency to plan ahead actually enhanced that; one or the other of us would pick something out we wanted to try, and then I'd figure out everything that needed to be done and, if needed, procured. She was quite enthusiastic about the little surprises I'd arrange for her.

There were problems, of course. She expected a lot of herself, and sometimes it bothered her that I didn't as much. I was happy with my life and with her, and I didn't feel the need to burn myself out at work or in my hobbies for some relatively trivial improvement of my skills or wealth.

Chloe, though, was drive incarnate; not competitive, not with other people, which wasn't immediately obvious. She competed only against the Chloe that was in her own mind, the one that could always be better. I respected that, but it meant that she could sometimes be mercurial in mood, disappointed in herself when she failed to attain a goal. At times, I thought she was disappointed in me, as well.

Those times were rare, though. We had a good life together, and good times. She was ambitious and energetic, but we enjoyed quiet times together, too, in the evenings after we got home from our jobs, after dinner and dishes.

I worked as a software developer, and she was a salesperson, occupations well-aligned with our personalities. We'd cuddle on the couch and relax, see movies together, occasionally even just laze around in bed on a Sunday morning when I could convince her. But more often, she wanted to go for hikes on the weekends.

It was during one of these hikes that I first really noticed a problem. Since they were supposed to be a form of relaxation, we'd go at an easy pace and enjoy the scenery. I rarely had trouble keeping up, and she never did, until that fateful day. Chloe found herself short of breath. By the time we made it back to the car, she was complaining that her legs felt tired.

It turned out that she'd been having these occasional spells for a while but never thought much of them, ascribing the fatigue to being older and not having as much time for training. It wasn't important enough to bring up yet, according to her, but I was immediately concerned.

After talking about it, I had her make an appointment the following Monday with our family doctor. He referred us to a specialist, who referred us to another specialist, and that's when we got what was, to that point, the worst news of my life: Chloe had a rare form of muscular dystrophy.

Muscular dystrophy isn't a single disease. Much like cancer, what we call "muscular dystrophy" is a number of different diseases and disorders that share the same symptoms. This means the treatments, onset ages, life expectancy, and quality of life vary wildly between specific disorders. And when we narrowed down exactly what Chloe had, the prognosis wasn't good.

Her life expectancy was probably about twenty years, and only a handful of those were likely to be good. She'd see her physical capabilities decay at a rapid pace, first requiring a cane and then a wheelchair to get around. She would get weaker and tire more easily, until finally her body wouldn't be able to support its own functioning anymore. My wife would pass away from lung or heart failure before she was forty-five.

Any chance of us having kids went right out the window. Her disease was genetic, and while she had two copies of the gene, even a recessive version would mean our children could potentially be affected by it. Her parents had been lucky enough to not suffer any noticeable ill effects, but the notion of passing it on was simply unthinkable.

Even if we had been willing to take the risk, however, it wasn't clear whether her body would be strong enough to bear and deliver a child unless we almost immediately got to it. And then I'd have to take care of a child almost entirely by myself while also taking care of my wife's failing health. It just wasn't worth the risk, and we decided to focus on improving her quality of life for as long as we could. No, there would be no children for us, and we would never see our golden anniversary.

It's the little things that are often our undoing; a submicroscopic sequence of proteins, a small weakness that grew over time, a seed of fear planted by an inexorable end.

Chloe tried to face it bravely; we both did. She wasn't dead, and we were going to live the time that we had together to the fullest. We were young, but I had planned for our financial needs already. We siphoned a little bit of that off to travel for a few months, hitting some of the places she'd always wanted to visit while she could still walk. They were a wonderful respite from the dread, those journeys to exotic locations, trying to fit a lifetime's experiences into that brief slice of the time she had left.

We made love with a frequency and intensity that rivaled our honeymoon, knowing that soon fatigue and weakness would steal this fevered intimacy from us. We never spoke of that directly, but the fear of losing that part of us long before the rest hovered in the backs of both of our minds.

I held her as she sobbed the first time she was unable to stand without a cane, when those long, lean runner's legs faltered as she tried to get out of bed on a cold winter morning. She slid helplessly to the floor, a fearful noise torn from her throat by the knowledge that she was losing control of her body and that it would only get worse. She had been diagnosed barely three years before.

"Please, Nate, please, please don't leave me! I can't do this alone!" She held tightly to me, as tightly as she could, but her arms were already weaker. The terrified sound of her voice broke my heart.

I smoothed her hair and kissed the top of her head. "Shh, love. Shh, it's okay. Never. In sickness and in health, til death do us part. I promise, Chloe."

This brought about a new wave of sobs from her, and I could only hold her until they passed. Then, I helped her up and onto her feet, shackled to her new, hated companion: the cane

Six years after her diagnosis, she was no longer able to work outside the home, and barely able to inside. She had changed from sales to marketing, because she simply couldn't sustain the level of intensity she needed for the former. For a darker reason, too: she found that no one wanted to buy from a woman using a cane. Image matters, and hers became associated with illness, subconsciously turning off her potential customers.

I had transitioned to a new job, still in software development, but in the healthcare sector. I figured that being medical-adjacent gave me a better chance at getting her into any new clinical trials, and health insurance coverage tended to be more complete inside the industry. It made for less money overall, not because the industry wasn't flush with cash, but because I lacked the ability to simply move to a new industry when a better financial opportunity became available.

Our lovemaking dwindled to nothing within eight years of her diagnosis, and had been on life support years before that. It wasn't, at first, that she was physically incapable. We could still technically have sex, but as we became more and more limited in our repertoire, Chloe's ego took a hit. As her body changed, she felt more unattractive, furthering the damage. I did what I could to tell her I still loved her and thought her beautiful, but it wasn't enough.

Ultimately, I took care of myself manually and tried to not be down about it. One night, while we lay in bed together, Chloe said, "Do you... do you want to see someone else? Take..." She made a little miserable sound. "Take another lover?"

I'd be lying if I said that it hadn't occurred to me. But even if my attitude on infidelity had changed, which it hadn't, there were logistical hurdles that made it all but impossible. I could have hired a prostitute, I suppose, but that was fraught with its own dangers; the last thing either of us needed was me getting arrested.

And trying to date, or even just hook up, would have been a no-go if I was at all honest about my situation. What woman worth anything is going to want to take up with a guy that's just looking for a side piece while his wife is dying at home?

Hell, even ignoring all of that, I wasn't exactly much of a catch physically any longer; my muscles were a little bigger from having to help Chloe, but that didn't translate to being fit and trim. I had strong but not showy muscles covered with a layer of fat from my inability to get out and get any aerobic work in. This weight gain was exacerbated by the need to make simple, cheap, and fast calorically-dense meals so that I could get back to either working or taking care of Chloe as quickly as possible.

"No, sweetheart. No. I'm not going to do that to you."

"But--"

"No, Chloe. I love you, and I promised to forsake all others. That's what I'll do." She hugged me tightly and cried. I'd like to think it was gratitude, but looking back now, I wonder if it was instead guilt. Who knows? Maybe it was both.

Twelve years into her death sentence, Chloe was in a wheelchair full time, an expensive motorized one. Our house had to be modified to accommodate it. We needed a van with special machinery. There are programs to help with those things, but they're inadequate, at best. Her illness was draining us financially, and we were mortgaged to the hilt trying to keep up with the costs.

I had resigned myself to watching my wife slowly wither and die and then either declaring bankruptcy or struggling the rest of my life with a mountain of debt; I'd like to say that I bore this stoically, that I'd pay anything to have just one more day with her, but I can't. That kind of slow trudge towards doom, of looking at a future with no hope and a present with little happiness wore on my soul. I did my best to hide it from her, to be as upbeat as possible when it was us together, but at night I'd sometimes drive to a secluded parking lot where I'd sit by myself and cry.

This was not how I'd envisioned my future. Our future, when we'd been young and hopeful and deeply, madly in love. I still loved Chloe, but there was so much of a sense of duty mixed up in it now that it was hard to draw the line between where one started and the other ended.

I knew that part of why I stayed with her was our vows. Because it was the right thing to do. I had a sneaking, shameful suspicion that it was that, more than my love for her, that truly kept me by her side. I didn't want to be one of those assholes that abandons their wife when she's sick; I'd lost so much to this fucking disease, and I refused to lose my self-esteem, too.

I know that this sounds like a pity party for myself, and it was. I had to be strong around Chloe, had to try to be positive for her. Her body was decaying at an accelerated rate, and the end point of that was an early, painful death. I tried to keep that in mind, to recognize that my suffering was bad, but that hers was worse.

Chloe had gone from a vibrant, attractive, athletic woman, to, in her eyes, a wheelchair-bound burden to the people that loved her. She was on antidepressants along with a whole rainbow of medication that helped to deal with her symptoms. She was seeing a therapist. My wife was going through more than any person should be asked to handle, and I needed to compartmentalize so I could have my breakdowns on my time. But I still had them. Yes, her suffering was worse, but that didn't invalidate mine.

We started attending support groups around the time she had to go into a wheelchair, one for her and one for me. Hers was about connecting with other people with muscular dystrophy; mine was for their caregivers. We made friends there, some of the first friendships we'd been able to maintain in years.

In particular, we got close to Dale and Katrina; Dale suffered from the same type of muscular dystrophy that Chloe did. He and Katrina had been married a little longer than us, and they were a little older, but they got, on a level that almost no one else did, what we were going through.

Dale and I became fast friends; he was a software developer like me, still active despite his disease. "Hey, I sat around on my ass all day only using my fingers for years. What's changed?" He had a wry, self-deprecating sense of humor. I knew he hid behind it, using it as a shield against the fear and pain of the disease, but we all had our coping mechanisms. His seemed to work pretty well for him. Within a few years, he was one of my closest friends, and the closest that I saw regularly, something more akin to a brother than just a friend.

His relationship with Chloe was different than mine, but arguably more important. She had all but given into her despair, despair at ever being the person she'd once dreamed of being. He helped her see a different route, to redirect her misery towards good.

She turned her marketing acumen toward charitable work, helping various muscular dystrophy organizations as a way to both have something to do and as a way to reclaim herself. More than any of my attempts to stay positive, her friendship with Dale and his inspiration to her was the main reason Chloe didn't give into despair in the later days of her illness.

Katrina and Chloe were friends, but not close in the way that Dale and Chloe were. They were the ones with the least connection: Dale and I were both software developers with nerdy interests; Dale and Chloe were both suffering from the same disease; Katrina and I were both the spouses and the primary-- often only-- caregivers for our dying spouses. Katrina and Chloe were just friends with little in common outside of what had pushed us together in the first place.

We each brought something to our new friendships: Dale's sense of humor that buoyed mine and Chloe's spirits; my talent for preparation that helped Katrina and Dale find places in their routine that could be simplified and streamlined; Chloe's drive that, once unleashed again, inspired even Dale. Katrina was kind and soft spoken, which was welcome, but it was her profession that helped Chloe and I the most initially. She was a massage therapist, and I was desperately in need of one.

As previously mentioned, I was more muscular from helping Chloe than when we had first met. She weighed a little over 130 when she was healthy, but her weight had gone up to 160 due to her enforced sedentary lifestyle. It wasn't entirely dead weight, but there was only so much she could do to help, and moving that kind of load over and over, often wrongly before I learned the correct techniques, had wreaked havoc on my back.

Katrina helped to repair that damage with long, sometimes painful massage sessions that worked the knots out of my muscles, leaving me feeling like jelly afterwards. She taught me how to administer some of the same techniques, and through those skills Chloe and I were able to regain some of the physical aspect of the relationship that we'd lost; not sex, per se, but the intimate touch that she and I had both been starved of. We were both intensely grateful to our friend for that.