Jamison Hill is a contributor to my anthology, Disability Visibility: First-Person Stories from the Twenty-First Century (Vintage Books) and I was delighted to interview him about his new memoir which is available January 26, 2021, When Force Meets Fate: A Mission to Solve an Invisible Illness (Inkshares).
Please share a little about yourself and your background!
I grew up in the Bay Area, went to college at Sonoma State, where I was a business major and worked as a fitness instructor. Then I got sick in 2010, and I’ve been on that journey ever since. I’ve written about my experiences with illness and disability for The New York Times, the Washington Post, and the Los Angeles Times, among others.
We’re almost reaching a full year of living amidst the coronavirus pandemic. How are you holding up so far and what was it like when first started in your local community?
Besides the anxiety of it, I’m doing okay. My heart goes out to everyone suffering from the virus and the isolation of trying to avoid it. I think the reason I’ve been able to stay sane during this time is because I’ve sort of become conditioned to it over the years while I’ve been sick. The fear of catching a virus, and the isolation that comes with it, is something that I’ve been living with for the last decade. I remember the first year I was sick, my roommates left for a week and I was alone in my house the whole time. I panicked at first, and while it wasn’t fun being alone that whole time, I guess it was that type of experience that prepared me for this pandemic.
Congratulations on your new memoir, When Force Meets Fate: A Mission to Solve an Invisible Illness (Inkshares 2021)! How did this book come about?
It took me almost a decade to write the book. Roughly half of that time was also spent trying to find a publisher. It was a grueling process, to say the least. But now it’s here, and I couldn’t be more thrilled to share it.
I was particularly moved by your piece in The New York Times’ Modern Love series, “Love Means Never Having to Say . . . Anything” which became part of an anthology I edited in 2020, Disability Visibility: First-Person Stories from the Twenty-First Century (Vintage Books). What led you to writing a memoir at this point in your life?
I have always loved memoirs (I was influenced by books like Tara Westover’s Educated and Dave Egger’s A Heartbreaking Work of Staggering Genius), so naturally I wanted to write one myself. In the midst of my illness, I felt I had a story that needed to be told, especially because many people with my illness (ME/CFS) are too sick to share their story.
I had been working on my memoir for several years, but I couldn’t find a publisher, so I decided to write an essay and submit it to Modern Love in the hope of getting a book deal. It didn’t get me a book deal, but it was a great experience. Then I decided to use Inkshares, which is a crowdfunding publisher. So in the end it all worked out.
What were some of the most challenging aspects of writing your book? How did you build in access and flexibility in your writing process?
One of the biggest challenges was finishing the book while I was bedridden and having to adapt to writing with my disabilities. It took me almost a decade to write it. When I began, I was only moderately sick. I could still work, go grocery shopping, and take care of myself. But then I became bedridden and lost my ability to speak and eat. I was too sick to write the ending to the book, which had suddenly taken an intense twist—I didn’t know if I would survive.
But I wrote the ending in my mind anyway. And then I started to recover, but I was too weak to write on a laptop, so I slowly typed it out on my phone. I’d slowly type out my thoughts in the Word app on my phone. I was also very sensitive to the bright screen, so I tried different things to shield my eyes. At one point I was using tanning goggles and welding goggles to look at the screen while I typed. Then, because reading on the screen was nearly impossible through the goggles, I had Siri read back what I wrote to look for errors. Anyone who has ever worn tanning goggles knows how difficult this was, but that’s how important it was for me to tell my story.
Some days I could only write a few words, but as I got stronger, I was able to finish the book. Then the editing proved even more difficult. As hard as it is to write a book on a phone wearing tanning goggles, dissecting grammar and sentence structure is even harder. Not to mention, the emotional toll of reliving the events of the book over and over again as I edited was really hard. It felt good to write it, to purge the trauma I had been through, but going over that trauma repeatedly in the editing process was brutal.
In creating the narrative about your illness and your life what were some choices and questions that informed what you wanted to include or exclude in your book?
My main objective was to be as honest and transparent as possible. I wanted to lay it all out and let the readers interpret everything for themselves. That included my interactions with doctors and a slew of other people who have come in and out of my life over the last decade. Basically I wanted to include as much information about my illness and my life without making the book boring and the narrative meandering. At the same time, I wanted to limit the parts that invade the privacy of other people in my life, and when I couldn’t do that because the parts were integral to the story, I made sure to use pseudonyms.
Becoming disabled or chronically ill can be traumatic and that trauma can be compounded by the medical industrial complex, especially for people who may have mysterious symptoms and difficulty being diagnosed. How can the system and individual providers improve the way they treat people based on your extensive experiences?
That’s a really good question. The medical establishment does quite often exacerbate the trauma of being sick and disabled. And I think it’s often because medical professionals are so focused on fixing the problem (or even something that isn’t necessarily broken), that they don’t always consider the damage they are causing in the process.
Better training in that regard would help. And compassionate in-home care would, too. Toward the end of my memoir, there’s a period of almost two years when I was too sick to even travel a few miles to see a doctor. Then there was a scary moment when I had an emergency with my bladder, and I had to go to the ER, where the doctor sent me home without a remedy. It wasn’t until the next day, after my mom called in a favor, that a doctor came to the house, properly diagnosed the problem and gave me medication to solve it. Had that doctor not come to my house, I probably wouldn’t be here right now. When people say that in-home care isn’t necessary, I always think of that experience. The in-home doctor was far more effective than the ER doctor.
ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), similar to other chronic illnesses and invisible disabilities, is not well-understood and often portrayed inaccurately. What is the power of storytelling in dispelling harmful misconceptions about ME/CFS?
Storytelling is so powerful, probably the most powerful thing that anyone person can do to correct misconceptions and false narratives. A few years ago, I appeared in a Netflix series, and the producers totally misrepresented the stories of the chronically ill cast members, but we organized and put out a series of blog posts and open letters correcting the false narrative put out by the show. If you Google the cast of that show, our own first-person accounts show up before the show in the search rankings, and that’s how it show be; that’s the power of telling your own story.
How did finding community help change your identity and how you saw yourself over time?
For the first few years of my illness I was sort of a lone wolf. I didn’t even know there was a community that could help with the struggles I was going through. I wasn’t exactly looking for a community either, mostly because I thought I’d get better and go back to my old life. But as time went on, I connected with more chronically ill and disabled people, and I found a lot of comfort in them. I still do. Being sick has changed my identity, it has shaped how I see the world and the people in it. And as much as I hate being sick, I don’t think I could have gained those insights had I stayed healthy.
You write about your involvement in a documentary called Forgotten Plague. What role do you hope your book will play in the ME/CFS advocacy community?
Forgotten Plague is a great documentary. The directors, Ryan Prior and Nicole Castillo, made the film on a shoe-string budget and, in my opinion, it gives one of the most accurate visual depictions of ME/CFS and chronic illnesses. As for When Force Meets Fate, I hope it will have a similar impact as other books about chronic illness. I hope people will give it to their doctors, their representatives in Congress, their friends and family. But most of all, I just hope that disabled and chronically ill people read it and find comfort in a shared experience.
I think a lot about the millions of people post-COVID who will continue to have life-long, unknown effects from the virus. The gaslighting that happens to people who know something is wrong with their bodymind is not new. How can disabled and chronically ill people help welcome these new members of our community?
I’ve been thinking about this a lot, too. I think about it in the context of the beginning stages of my illness, and how utterly helpless and confused I felt. It took several years for me to get diagnosed properly. It’s my opinion that we can’t expect COVID long haulers to find our community on their own because they might not know it exists. And if they do, they might have reservations about joining a community of sick and disabled people because of what it would signify for them. In their minds, it might mean giving up hope of having a full recovery. I think, as a community, it would benefit everyone if we reached out to those people to show them that that’s not the case, that even if they don’t fully recover, there are ways to adapt to living with their illness, ways that will provide purpose and enjoyment.
Two things that a lot of disabled and chronically ill people understand is uncertainty and interdependence. Can you share some of your thoughts about both?
I think, at least for me, that there’s fear rooted in the uncertainty of not knowing whether my health will improve or stay the same or get worse. Uncertainty creates a lot of fear and anxiety within me. Interdependence is something that I resisted at first. I refused any kind of help, but as I got sicker, I had to depend on people to survive. I still do. But the beauty of interdependence is that you can also be independent. You can rely on people for some things but still hold onto your autonomy in other things. I’ve been experiencing that a lot lately. I still need someone to make me food and do my laundry, but I’m well enough to shave and brush my teeth on my own. When I first got sick that would have felt like losing my autonomy, but having been much sicker, it now feels good to do some things for myself again.
On another note, disabled and chronically ill people often adapt, expand, and transform what most people imagine intimacy looks like. What does intimacy mean to you?
It’s easy, especially for healthy and able-bodied people, to correlate intimacy with sex, but one thing that I tried to convey in the book is that there are many different kinds of intimacy, and even more for sick and disabled people. I tried to show intimacy from as many angles as I could, especially relating to my illness. There’s the intimacy of my internal monologue. There’s the intimacy of my romantic relationships. There’s the intimacy of my family caring for me when I’m bedridden. There’s the intimacy of my best friend seeing me too sick to speak or eat. If done right, intimacy in storytelling is a really powerful thing.
What’s your advice for disabled and chronically ill people who want to write professionally?
My advice is to write on your terms and don’t let it impact your health. It’s very easy to get pushed around when you’re trying to make a living, or even a supplemental income, writing. When I first started, I was paid three cents a word to write about porta-potties. That obviously wasn’t my proudest moment, but I’m glad I did it, both because it’s a funny story and because it allowed me to develop my writing skills with relatively low stakes. As the stakes get higher—the pay increases and the deadlines get more intense—make sure you hold your ground and always put your health first. Turning in an assignment on deadline is not worth making yourself sicker.
Support Disability Media and Culture
DONATE to the Disability Visibility Project®