For almost twenty years, I lived in Massachusetts, in an area nestled between the Berkshire Mountains and the Eastern Massachusetts ridge: The Pioneer Valley.
My first two addresses were college dorm rooms. The next was a boxy one bedroom apartment, situated behind a small strip mall with a 7-eleven and a liquor store. We picked it because it was on the bus route for the University, and because it was modestly priced — which is really just a nice way of saying crappy. And it was, but we didn’t care because all that mattered was that it was our very own place. We were halfway through school, and our life was a collage of classes, coffee, and part-time jobs. Late at night we would walk up to the 7-eleven, to buy a candy bar to split.
Before that, it was the Catskills of New York State, where my husband and I both grew up. People are often surprised to find out we’ve known each other this long. Technically we met in High School, but neither one of us ever considered that place, or time in one’s life, to be of enough importance to call ourselves High School Sweethearts. While the rest of our graduating class attended prom, we went to a movie and then out for Chinese food. (A teacher saw us eating and chided us for skipping such “an important high school experience.” She told us we’d regret it. We didn’t.)
There are a lot of concerns people have about committing to someone you met very young. They sometimes express them to you, in ways they think are subtle: “You have lots of time, you don’t need to rush into anything.” “You’re so young, why think about the future right now?”
Of course what they really mean is, “You’re making a huge mistake.”
Fortunately neither one of us has ever been in the habit of listening to other people, on things like this.
After the apartment complex, we moved to a historic house in Amherst to work as live-in caretakers. It was an 1860s-era mansion — white with red shutters and a giant wrap-around porch. It was an imposing, grand house, built in the Italianate Villa style high up on the hill facing Main Street. In modern times it was used as the meeting place for a local women’s club, with the formal downstairs rooms and grounds rented for events. It was beautiful enough that you hardly noticed its faults; In addition to the elegant ebony fireplaces and soaring 13 foot ceilings, our upstairs apartment featured cracking plaster, peeling paint, and an unreliable 1970s-era refrigerator. There were other apartments upstairs, occupied by a revolving door of college student tenants — the only people willing to put up with the constant chaos of living in an event rental facility. We were the supers of the building, in addition to serving as event staff for the weekend rentals.
And so it went: life in our twenties. Weekends were spent cleaning up after massive wedding receptions of other people, weekdays spent trying to make progress on careers that seemed to be stuck at entry level. Even though it was hard, and tiring, and depressing, and a struggle, and all the other realities of early adulthood… still, we were happy, in our tiny apartment in that rambling old mansion.
It was here that he first got sick.
He had been unwell for a while when I pulled up my digital camera on our couch, and started going through photos of the past six months. They were mostly pictures of our apartment: the cats, new furniture we had bought, drawings I had worked on, the sunset through our huge, antique windows. In nearly every shot, there he’d be — sleeping on the couch or in a chair. “It’s been a few months at least with these naps,” I said to him.
Nap is the wrong word. Napping was what my dad would do when he’d get home from his city job — he’d read the paper, drift off for half an hour, and then come downstairs in time for dinner. It was restorative, a power nap.
This wasn’t a nap; it was exhaustion, and it had become nearly constant. After getting home from work he would lie down, usually saying he needed to close his eyes for fifteen minutes only to end up sleeping the whole evening away. Weekends were the same — all our plans had become tentative, only ever finalized the morning of based on the question, “How are you feeling?” We couldn’t afford to move, so we still had to deal with the weddings — both the late night din of partying and the set up and break down of a hundred folding chairs. Refusing to leave these chores to me, he continued to clean up after events late into the night — even if it meant falling into bed as soon as we went up to our apartment. More and more, the exhaustion was accompanied by migraine headaches. Bad ones would escalate over the course of a day, ending in vomiting spells. I started worrying about brain tumors.
And so began the parade of doctors, first regular ones and then specialist after specialist. There were tests for Lyme disease, Lupus, and vitamin deficiencies. His mother reminded him of a childhood issue with iron — surely that would be it. It wasn’t. There were tests for things we’d never heard of. All negative. The sleep studies only ever came back mildly abnormal. Then there was an MRI for multiple sclerosis, which I was sure would be the magic bullet — after all, he had a family history.
He had the MRI done in the large, city hospital and came to meet me at my office for a late lunch. We sat eating our sandwiches in a park together, thinking about what the results would mean. In that moment I faced the reality of progressive illness for this, my favorite person. I saw a vision of our lives, his state worsening over time, adapting and pivoting to make the best of it, dealing with it as we grew old. I saw it all, in my mind, and accepted it.
Once again, though, negative.
“Maybe I have middle class malaise,” he said, referencing the fact that we had both recently transitioned from physically active jobs to office work. He was joking but I knew some part of him worried that maybe this condition wasn’t “real.” It’s a common way to feel when doctors don’t know what’s wrong with you. Because they never actually say, I don’t know what you have. Instead they send you on little quests — try cutting out coffee. Go to sleep at the same time every day. Make a diary of your headaches, how tired you are, what you ate, any other details. (This, he did, and handed to a neurologist, who glanced at it with all the scrutiny you’d give a packing slip).
“People don’t get this from too much coffee, or not enough sleep,” I said in frustration, after one of his neurology appointments. I couldn’t understand why there was such a focus on small lifestyle choices when the symptoms were so big and life-altering. Is the idea that the patient is a hothouse flower who, unlike the rest of the world, needs a perfect proportion of sleep and specific foods — is it Princess and the Pea disease? Or maybe — I pondered with cynicism — they really think you have nothing at all, and these missions are just to get you out of their hair.
Still, he always followed their advice, and cut out coffee for three months (no change). He did cardio three times a week (again, no change. Well, actually it would usually result in an uncontrollable migraine, complete with vomiting). We both cut out wheat and soy and dairy for a while, even though all the sensitivity tests were negative. “Just in case,” we said. We tried a lot of weird things under the banner of Just In Case. Doctors started repeating tests. Still they were all negative. At night I’d find myself thinking about brain tumors again. Maybe they missed something.
If this were a movie the next scene would be in a research hospital, where a genius doctor would swoop in — an abrasive, Dr. House type — and point out an obvious-but-unexplored-clue. Clearly it was lead poisoning, from all the peeling paint in that old mansion! Surely it’s an inherited neurological disease! Maybe it’s a false negative on the Lyme test! (I entertained all of these theories, at one point or another.)
But what actually happened was this just went on, with no real explanation, for the rest of our twenties. We eventually moved out of the mansion and into our own house, a Victorian in the nearby city of Holyoke. The headaches became more-or-less controllable with high doses of painkillers, and the fatigue — well, that was just something we both learned to live with. We limited travel and some other things that seemed to act as triggers, and we found new, low-impact hobbies to enjoy together.
His symptoms would later be called chronic fatigue syndrome (CFS), a disorder characterized by extreme exhaustion and problems with memory and cognition. There are some theories that a post-viral reaction — similar to what is being seen now with “long Covid” — is what’s behind this debilitating condition. Abnormalities in the immune system, cortisol and serotonin levels, and blood pressure have all been observed in CFS patients, but currently there’s no consensus on causes or treatment.
His illness was not something we talked about much, outside of a few very close friends. Oftentimes, trying to make a life for yourself means pretending like you can handle anything, so that you will be given something. The pretending was the hardest part; jobs often got the best parts of him, because keeping up appearances is more important there than anywhere. I guess that’s the thing people don’t usually see in people who are unwell, or have some type of disability. That they are tougher, because their regular life is harder than everyone else’s, and that no matter what condition they’re in, there are still lawns to mow, taxes to do, snow to shovel.
Sometimes I wished his life was easier, but mainly I admired his strength.
It was a family friend, Donna, who changed both our lives.
Donna had a niece in the United Kingdom with a similar story — a sudden illness that stole her energy, seemingly forever. The niece had recently been put on a medication, an older drug that was thought to have an impact on chronic fatigue, and her symptoms had improved for the first time in years. Through this family grapevine we got information about the medication and dosage.
The next week Cody called his doctor, and asked him to prescribe this same drug, which we picked up at the pharmacy the following day.
Soon after it became clear that things were changing. Within a few weeks, the fatigue, the sleeping, the exhaustion — it was all gone. Suddenly I was living with a different person. The migraines remained — as they do now — but overall they were a distant echo of what had been. I waited and waited for the pendulum to swing back, but it never did. It was just over, as mysteriously as it began.
A year later we sat outside at a German beer bar with a group of our friends, celebrating his birthday over lunch. We were all somewhere in our thirties — our careers had started to stabilize, and many of us had begun to buy houses and plan families. The conversation shifted to aging, and what it means to not be in your twenties anymore. Was it sad? Scary? Are we all old, now? “Happy birthday, Cody,” said our friend Mollie. “How do you feel about being thirty-two?” I looked over at him, his smile beaming. “I love getting older, it means being alive.”
We smiled at each other across the table. I knew he appreciated his present life, so deeply, in ways few could understand. Mollie laughed and said, “Well, you’ve got the right perspective on it!” We all raised our glasses to that.
It was that year that we started hiking more seriously. The closest trail to our house was walking distance — from the reservoir up to the old Mountain Park ruins. Mountain Park was, at one point, a Holyoke landmark — a regional amusement park complete with roller coaster, alpine slide, and hand painted carousel. In its mid-century heydey, the park saw crowds of visitors from throughout New England.
The attraction closed in the 1980s, and much of it was allowed to decay in place. It became an easy target for local teenagers, and every time we hiked to the ruins there’d be new graffiti on the old snack bar building or the walls of the empty wave pool. Well, the pool wasn’t entirely empty — usually you could find snakes swimming in the mix of leaves and rainwater. Nature seemed to encroach on the property more, each year.
The first really hard hike I remember doing was there — we climbed the old ski slopes from the park ruins, crossing the ridge to get to a radio tower. It was a blustery January day, the kind where the cold air slices right through your coat. We sat and ate the homemade chocolate chip cookies I baked — a hobby I had nurtured during the mostly-indoor years when he was ill. They were good. We were tired — we weren’t in very good shape.
Because it was so close by, hiking around Mountain Park became an after work routine. We’d start at the reservoir, ascend to the old park buildings, and then eventually take the long paved trail back down to the parking lot. It was pretty steep but the more we did it, the easier it got. So many times I looked over to him — walking briskly up and down the hills, carrying his heavy hiking pack — and thought how surreal it all seemed, that he could do this now.
For weekend hikes, we had many options. Our city was also home to Mt. Tom, a 1,700 acre state forest with numerous hiking trails. In the next few years we traversed every trail on that range, from the gentle loop around Bray Lake to the rocky peak thought to have inspired Mt. Crumpet in How the Grinch Stole Christmas. I came to love that mountain. I think being in its shadow made living in a city bearable for those years, even as my heart longed for the country life of my childhood.
We hiked in all seasons, even the deep winter, when we’d need ice cleats and head lamps for any post-work walk. The first twenty minutes or so were always misery, but after that you’d get used to it — as long as you were dressed warmly enough. We accumulated more and more winter gear — thermal undershirts, puffy jackets, insulated boots. February would require two sweaters, two pairs of socks, gloves, hats… sometimes we’d even dig out goggles, for days when it would squall pellets of hail into our faces. Hiking in bad weather isn’t for the faint of heart, but it has its rewards — I once saw a huge barred owl fly out in front of me, against a blanket of gently falling snow. Or those December nights where we’d ascend one of the steeper trails to look down over Easthampton, the twinkling lights of Christmas trees glowing through the windows of so many tiny houses.
My favorite hike in all of the Pioneer Valley was a trail on the Mount Holyoke range that leads to the old Summit House, a gleaming white building on the very ridge of the mountain. We’d always do that one on the most beautiful days, with our friends, to try and catch a late summer sunset from the house’s porch. Cody and I had actually hiked there once years ago. It was the first year we moved to Massachusetts as College students, way before he got sick. I remember there was a wedding taking place that day, up on the porch of the mountain house. The bride had dark wavy hair, blowing around in the wind. She was smiling.
I think about that wedding, and the countless ones we overheard in the rental facility — the parade of bright, shiny faces crossing the threshold just under our apartment. I was never a big wedding person — chalk it up to introversion combined with those hundreds of folding chairs — but it hung in my mind, that vow that they all said: in sickness and in health. I suppose with most people there’s a predictable pattern here — in the springtime of youth there’s health, and with age comes sickness. For us, time’s arrow flew in reverse: sickness, then health.
Although I appreciate wellness and ability more now than I ever thought possible, I don’t consider our life story to be a tragedy followed by a miracle. Life was hard then, and it’s hard now. But so is hiking mountains, homesteading, raising animals, and all the other things we like to do together. I think that’s what in sickness and in health really means. It’s not a promise, a pinky swear to stay together no matter how miserable you both are. It’s the mark of what love is, how deeply it runs. I think back to those two teenagers who eschewed the prom, because they just wanted to sit and talk to each other. It’s what the naysayers could never understand. It’s why we were always happy, even in those difficult years. His sickness never separated us from what we wanted most in life: each other.