The diagnosis changed everything, but I didn’t want to let it take this from me.
It was the last leg of a trek through the English countryside and my friends and I were not even halfway through the day’s 17-mile hike. I tried not to think about that number as we faced a sharp incline in the middle of a lush, damp forest. Murky puddles littered the trail, mirroring my mood. There was no escaping it: I was depleted, and no amount of rest, almonds, or telling myself I was fine was making me feel better. I stopped and I began to weep.
I was pissed at my body for failing me. Pissed at this disease that had just barged into my life. Oh you thought you could live like nothing happened? Oh sweetie, NO. I wanted to prove to everyone, especially myself, that I could do this, but at that moment I felt like I was swimming upstream in a fur coat.
Then my friend Kathreen perkily chimed in, “If you need to puke, you can aim right down that hill.” I didn’t actually feel like I was about to hurl, just that I weighed 2,000 pounds, but her joke got me out of it. Laughing is my drug of choice. Maybe I could do this?
A year earlier, in the summer of 2022, chronic illness was the farthest thing from my mind. My husband, Andy, our Shih Tzu, Gilly, and I were living in a spacious pre-war apartment, made relatively affordable by the pandemic, on Manhattan’s Upper West Side. It had exposed brick, friendly neighbors, and best of all, we could emerge out into a bustling city. We would spend our free time in Central Park, walking to our favorite dive bar on Friday date nights (shout out to Dive 75!), or checking out a comedy show. Things were good, things were easy. Then one June day I was doing some very simple at-home yoga, and as I was coming up from a root-to-rise, I suddenly felt motion-sick. No surprise at 40—a somersault can put me out of commission for hours.
But this feeling wasn’t going away. A few days later I made a doctor’s appointment and she declared I had vertigo. However, the exercises she recommended didn’t help, and the dizziness wasn’t abating. Soon I could barely walk Gilly around the block. I couldn’t look up and enjoy my cute neighborhood—that would involve being able to see straight. After reading one too many books where the main character gets a brain tumor or suffers an aneurysm, I’ve always carried the nagging feeling that I’d end up like them. Well here we go, I thought.
When I returned to my doctor and she said she was “stumped,” I insisted she refer me to a neurologist. I made an appointment and waited in fear for three long weeks. I called my mom, exclaiming I wasn’t ready to die. We both cried, and although 700 miles away, she was right there living this hell with me.
The day of my appointment finally arrived and I was full of nerves; I was sure it would be the worst news possible. Andy came with me to help deal with whatever came our way, and after a brief exam, the neurologist told me to immediately check into the emergency room for an MRI.
Late that night, the ER doctors administered the MRI, and when one of them uttered the words “it looks like multiple sclerosis,” I began to shake uncontrollably. The doctor, most likely a witness to terrible horrors every day, remained steely in his delivery. I’m sure he told me other details, but I didn’t hear them. I remember noting how calm he was, but this news wasn’t happening to him. It was my life that was, in real time, changing forever.
Once I was admitted to a room, and after my first-ever spinal tap (there are way fewer laughs than in the 1984 Rob Reiner movie), neurologists confirmed what the ER doctor initially surmised. It can often take years to receive a diagnosis for this difficult-to-pinpoint disease; doctors often brush off patients, especially women, as “overly stressed” and push them from specialist to specialist. My disability might be much worse if not for my doctor’s quick intervention.
The doctors then informed me that they had only detected one brain lesion—many people with MS have lesions all over their brain and spine—because we caught it so early. They also let me know that treatment has progressed exponentially in the past few decades. I was used to hearing about people with MS having life-altering disabilities, but I picked a good time to get it—we were in a golden era of advanced treatment.
Even with this good news, we decided on day two in the hospital that we would move back to our home state of Michigan to be closer to family. I felt like I was tailor-made to live in New York City; I loved everything about it, down to the noises, smells, and even the rats. But I wasn’t thinking of that in the hospital, I was thinking about getting to medical appointments, visiting family, having space. I’m not sure I made the right decision, and often long for the days when I could step outside my apartment and do, essentially, anything I want. But at that time, with a new brain disease in tow, I was ready to set forth a plan to live as comfortably as possible.
Just a month before my world turned upside down, after watching loads of Rick Steves on PBS, Andy and I, and our dear friends Kathreen and Eric, had been inspired to plan a walking trip through the Cotswolds of England. Each day we would hike from one charming village to another, staying at centuries-old inns that a tour company set up for us. We would top it off with a three-night stay in London.
MS threw a pesky wrench in this plan, but after a few rounds of monthly infusions, during which I am hooked up to an IV and sit for a few hours while the medicine does its thing, I decided I would go ahead with the trip. The infusions had almost immediately eliminated my dizziness, but I still often felt worn-out and off balance. I let our friends know I would have to take it pretty slow, and they said they were happy to not rush through a scenic trip. I thought, what the hell, let’s just try this and hopefully all will be okay? I wasn’t going to let a measly multiple sclerosis diagnosis stop me from potentially having the trip of my life.
I put on a brave and humor-infused front. One of my favorite things in life is to push away feelings, but the truth is, I was scared. I trained as best I could during that summer’s scorching heat waves and skies hazy with wildfire smoke. But after walking more than a mile I would feel sort of dizzy and drunk, not in a fun way. Nevertheless, I got on that plane to London, and the excitement of traveling filled me with hope.
After a train ride to Bath and a luxurious night’s sleep at an ivy-covered B&B
—followed by a delicious home-cooked breakfast of fresh eggs and about seven different types of sausage—day one of walking was upon us. With a map, almonds in my fanny pack (do not call it that in England), a walking stick, and a let’s-just-do-this-and-hopefully-I-don’t-need-to-be-medevacked-out attitude, we set forth on our journey.
It was not easy. It was rainy and humid, I stopped a lot, and we got a little lost. But we made it to our next inn in the scenic town of Bradford-on-Avon. That first pint in a very old pub at the end of the day was nothing short of glorious—even with its English lukewarmness. We felt invincible that night.
The following days were so picturesque they seemed fake. The sky was sunny and the temperature warm as we encountered beautiful stone houses akin to Kate Winslet’s cottage in The Holiday. Everything was flanked by a luscious green landscape and gorgeous summer flowers. The map told us to walk through private farms, and we could not stop talking about how neat and not-American everything was. We learned the names of the different style gates that separate properties, while still allowing the public to traverse. KG stands for kissing gate due to its tight nature when passing through, therefore bringing two people close enough for a smooching opportunity. Not a KG went by where Andy and I didn’t take advantage.
A huge old tree provided shelter for a picnic feast of the fresh pastries we had picked up that morning in a small bakery. Nothing could have tasted better. A sheep chased Eric and Kathreen as Andy and I unhelpfully stood by and laughed. I pet two horses. This was the trip we dreamed about for months!
Now day four was upon us. The previous night we stayed in Castle Combe, billed as the prettiest village in England. The town is full of stone structures and winding streets; perfect for shooting movies and pretending it’s any era in time. It was lovely, but by day three of walking for 12 miles straight, the exhaustion was setting in, and the scenery was a bit lost on us. The concierge at our inn gave us a look of pity when he heard we had our longest and hilliest walk yet ahead of us. Still, we ate our complimentary breakfast and set out around 9:30 a.m. for our final 17 miles. But after the first few, the jokes fizzled out and we all kept inside what we were really thinking: Does this sort of suck now?
Then, after descending into that impossibly muddy valley, staring up at the climb ahead of us, my spirit broke. I wondered how the hell I was going to make it out of there. My body was so heavy; my right leg didn’t work like it used to; my stamina was sapped. I’d had struggles throughout the trip, but this felt like a breaking point. The seemingly impossible climb ahead put me face-to-face with my new reality: I had a disability. What was I thinking? Why was I on a 17-mile hike in a foreign country after three arduous days of walking?
I wanted to lie down right there, but after my puke-joke giggle courtesy of Kathreen, I realized I had a choice. I could tell my friends to call whatever 911 is in England, or I could summon some tenacity and keep going. It’s not that I mind quitting things—it can be healthy, even fun, to cut ties with something that no longer serves you or brings you joy—but this was not something I was willing to abandon. I sucked it up, heavily leaned into my walking stick, and kept moving. Maybe it was stubbornness, or maybe it was the strong desire to be seated in a pub drinking a lukewarm ale. I do know it was mind over MS, and on that day the mind was winning.
We did finally make it back to our original B&B in Bath, and it turns out I wasn’t the only one struggling. Over a well-earned beer, we discussed the fact that day four had lost its luster, somewhere around mile two. But we did it. I will always have that.
Andy, Eric, and Kathreen never babied me on this trip. They didn’t constantly check in, comment on how slow we were going, or ask if I wanted to stop. Instead they joined me in doing silly bits (often in really bad English accents), excitedly taking in the pastoral scenery, and walking with me through not only the Cotswolds, but the beginning of a lifelong illness. And after 50-plus miles, I learned I can still live a full life with this diagnosis, I might just need a few more pit stops and a lot more snacks along the way.
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