In August, we had a bigger event at Lake Tahoe. We both teach writing in an MFA program out there that affords us occasional expense-paid trips to teach on campus. What better beauty to have a wedding and once again, free! This time we dressed up proper, me in a handmade, vintage lace Etsy gown, and Joe in his kilt. One of our closest friends married us beneath the peaks at Mt. Rose with a community of writers and teachers we hold dear.
Living in West Virginia: The Start of Our Journey
The population of West Virginia is only 1.8 million people which is about three times smaller than the size of New Jersey, whose population is over 9 million. For anyone familiar with Frenchtown and Hunterdon County, New Jersey, you know it’s considered rural. It’s a fairly pristine county of horse farms and rolling hills that hasn’t changed all that much since I was a baby, and you can enjoy the Delaware River, woods, trails and lakes as well as a bunch of small, noncommercial river towns. I also lived across the river in Pennsylvania for about twenty years, a bit more rural, more wild, considerable distance from a good hospital, which was an issue for me then as well, and I’ll write more about that soon. I’ve spent my life living in both small towns and the woods and I’ve always considered myself as a “country girl”.
But West Virginia was a whole new wild and wonderful world, vast and stunning and isolated.
We bought an adorable bungalow in the mountains, previously owned by an artist who had put so many gorgeous touches on the house and in her gardens. We got to inherit it all. I immediately got to planning more gardens, planting vegetables and flowers, and harvesting blueberries, raspberries and blackberries. Tree frogs and more birds than I’ve ever seen, and Luna moths the size of my hand delighted both of us. We created Instagram accounts to document the wildlife around us. We’d found a sanctuary on the mountain and even though we suddenly had tasks like chopping wood for the winter, and chasing a lot of unexpected visitors out of our house (hello, garter snake) we loved it. We moved right before the pandemic, so we had these ancient, untouched acres of oak and redbuds and dogwood to explore and care for instead of being trapped in our old apartment.
At the same time, Joe started experiencing problems with swallowing. He’s had some issue with this in the years I’ve known him, but it had never been severe or persistent enough to be a warning sign. And prior to my new cancer education, I wouldn’t have even known it to be a warning sign. I sometimes thought it was a response to anxiety, and in December with a new job and pending move, that was my assumption once more. But then he got the flu and completely lost his appetite. We live about fifteen minutes from a decent-sized town that has most of the amenities one needs, basic as they are—Walmart, Tractor Supply, Sheetz—and when he wasn’t getting better, I worried he might have pneumonia. So, he went to EZ care for a chest scan.
Maybe two days later, after we got the results of that scan, I wrote in my journal:
January 18. Day One.
Cancer Diagnosis & The Other Side of Rural Living
Although we didn’t have the official diagnosis yet, I knew the scan was accurate once I did a little research. He had esophageal cancer and it had already spread to his lymph nodes. Later we would learn it’s Stage Four. It’s still baffling to us both that something so extreme can be lurking in your body without making itself known until the last minute. Especially in someone who has now just turned fifty, has always been physically active, never overweight a day in his life, doesn’t smoke, has no family history of cancer, no real markers for this beast.
If one thing is true, cancer does not care about statistics.
My first panicked thought was: we need to move, like, yesterday. While there is a small, 25-bed hospital about an hour away, the closest cancer center is an hour and a half. As I began reading about how he would be treated—chemoradiation that would involve daily appointments—I realized there was no way we could stay home while this carried out. Not only because driving three hours a day for a fifteen-minute radiation appointment would be ridiculous, but what if there was an emergency? I’ve heard plenty of stories; I knew the poison that kills cancer is no joke.
This is where a good friend of mine stepped in to help. She works for Cancer Hope Network and she reached out with resources from her organization and other connections immediately. I had no idea there was so much out there for families going through cancer. Mentor connections, gas cards, hotel discounts, even pet care services and so much more. In the beginning, after a diagnosis like this, there is so much to weed through, but Rachel made it possible for me to focus on a few really important priorities.
Still, it’s just us out here in the woods. We’ve made a few friends, (bookstore related of course) but not a ton since most of our time here was during a pandemic! While our friends have been incredibly supportive and helpful, they are not physically close to our actual home, and I’m not sure we could expect them to truly be on the inside of this awful journey, in the actual muck and darkness and constant hypervigilance that comes along with it.
So just like that, our sanctuary of a home turned into a trap. But we couldn’t go forward with selling it during Joe’s treatment, so we took it off the market and started to draft a new plan that involved living in a hotel near the hospital for six weeks. A plan that was only made possible by our enormous network of distant friends and family who generously contributed to our fundraiser. A plan that the majority of people who live in West Virginia would never be able to make. Although the hotel offered a generous discount for cancer families, it still amounted to thousands of dollars. Money we could not have come up with on our own.
The Challenges of Rural Cancer Care
This has opened my eyes to the struggles in rural areas in a whole new way, and while Joe and I do have the resources to change our living arrangements so that he has the care he needs—again because of so many generous souls—that would not be the case for most people in this region. According to a recent PBS broadcast, (which I encourage you to watch) nearly two-thirds of areas with a shortage of primary health care professional are in rural communities, let alone specialized medicine like cancer care. And 99% of medical training takes place in cities and suburbs, where doctors usually end up working. So rural areas are frequently left to very few options.
Medical schools like WVU are beginning to take this on by giving doctors extra training and education to specifically work in rural areas since federal programs have failed the region. In many cases West Virginia residents have to drive far more hours than Joe and I have to see a specialist. So, these primary doctors have to serve as specialists in order to help their patients avoid such trials just to receive quality health care.
People who live in rural areas are often overlooked and unfairly judged. I have received hurtful comments from people for moving to a “rural red state”, and in today’s polarized society the divide between the choice to live urban or rural has become a political decision at best, and a moral one at its worst, which is completely ridiculous. The reality is, people of all backgrounds and politics and belief systems live in both cities and in rural areas, and everyone deserves a quality level of health care. Without easy access, people avoid appointments and treatments because the financial burden is too high, or they don’t have reliable transportation or the ability to stay in a hotel. While some young people are beginning to get their medical education and return to the rural land they love to practice, West Virginia is in need of so many more.
Receiving this diagnosis has been a blow to both our lives, financially, emotionally and physically. We are slowly figuring it out despite the uncertainty, are both adaptable people who will run with whatever change is needed in our own lives, but in the meantime, I’m learning how much more difficult this diagnosis and rural cancer care could be for other families. I find it incredibly sad that such a beautiful landscape, a place where so many escape to from the city for recreation and peace, is hurting for such basic needs. We cannot write off rural areas simply because it’s easy to look away, or we don’t like the perceived politics, or in our case, leave. It’s not fair to use up a place for our own enjoyment (or industry) and turn a blind eye to the people who have lived here and cultivated the land for generations. I look forward to sharing more of our story, and the stories of others I’ve witnessed while living here to help further expose the struggle for what many people in other areas of the US consider basic needs. I’m not the first in any sense to become aware or be affected by of some of the unique issues in rural areas, but in my own tiny way I hope to help.
