Doing book events as a disabled and neurodivergent person

When my book “San Francisco’s Forgotten Cemeteries: A Buried History” came out at the end of August, I was lucky to be able to do lots of events around the city to promote it. Over the course of two months, I had six “in conversation”-style events and three readings, plus a couple of podcast recordings, and most of them were in person. 

Most authors will tell you that the book-publicity cycle is exhausting and grueling, even when it’s also a lot of fun — after all, you’re getting to talk in depth about a topic you’re really passionate about. But I also have chronic pain/illnesses and sensory sensitivities (and I’m an introvert), so I knew this process would probably be very hard on me. 

Before planning my schedule, I paid a lot of attention to what other chronically ill and/or neurodivergent authors have advised, and I did my best to create a schedule that would work for me. I’d like to share a little of what I learned ahead of time, what I did, and how it went. 

Johanna Hedva is an artist and musician, and the author of several books, as well as an outspoken advocate for accessibility and disability justice. Their disability access rider, which creates an accessible space for themself as well as for their audience, can be found here. 

A couple of items in Hedva’s rider stood out to be as potentially very useful in my circumstance. They write, “I require at least 48 hours after arriving to acclimate before I can participate in any public events. I’ll need to fly home the day after the event.” I wasn’t flying anywhere, but this tipped me off to the idea that I should try to book a day of recovery/rest after each event, where possible. In practice, it turned out that I really needed to rest the day before (and day of) the event, plus two days after. 

Ultimately, I tried to schedule my events about a week apart. On top of my personal health needs, I’m a partner and a mom (of a kid who started high school two weeks before my book launched!), and I needed to stay on top of those responsibilities as well. 

For the most part, that schedule allowed me enough time between events to recover and feel ready for the next one. It also allowed me, in one case, to take on an additional event that was very worthwhile, in terms of getting word out about the book. On the downside, I wound up with three events that week — and it was the same week my cat had to be hospitalized after eating something toxic. It was rough!

Hedva also writes, “I require all of the below to be confirmed and agreed upon by contract at least three weeks before the event takes place. Trust me, the more time there is to work out all the logistics, the better.” Inspired by this, I set up my event schedule fairly far in advance, so that once I was in the thick of things, I would know where to show up and when, and not have to worry about logistics anymore. One event was still in flux up until about a week beforehand, and another popped up just a couple of weeks before it happened. That was an extra cognitive burden, but having my schedule mostly set far in advance really helped. 

For one event, I had been to the venue before and knew that the overhead LED lighting might give me a migraine. I asked the event coordinator if they could work with me to lower the lighting, and they did. 

Another helpful guide for me is the one that author Katherine May (“Wintering,” “Enchantment”) put together, particularly to protect her needs as an autistic person. I find almost all of her accommodations for online and in-person events to be incredibly helpful for me. 

While I didn’t specifically request any of May’s suggestions from the venues where I appeared, they were important for me to keep in mind as I decided when to show up before an event, whether to mingle or rest beforehand, and so on. Unlike May, I find that showing up a bit early is helpful for me, particularly if I don’t already know a venue well, so that I can get acclimated to the space before other people begin arriving. 

Even with all these plans in place, I was still exhausted for a day or two after each event, I dealt with some brain fog and lack of executive function after events, and my throat was usually sore from reading and talking more than usual. In a couple of cases, I really should have asked for a chair at the book-selling table, so that I could sit while selling books and talking to readers. If I stand for long periods, I often get light-headed and my legs will hurt, but I sometimes got so caught up in things that I wasn’t paying attention to my body. 

And, after all that, it took about a month for me to get back to baseline energy levels, where I felt like I could do new work again. 

May writes, “Not everyone will be able to ask for accommodations like these — and also … I won’t always get them, despite asking. But I think it’s important to use my relative privilege to ask anyway. Hopefully it will begin to raise awareness amongst journalists and organisers of the kind of needs autistic people have.” 

I wish that I felt like I could have gone further and requested the kinds of accessibility that Hedva and others require, such as sign language interpreters online and in person, and live captioning for online events. But none of my events were paid, and only one was ticketed, to cover the cost of renting the venue. And currently, most venues don’t have the costs of interpreters or captioners built into their event budgets. They should, but we’re not there yet.

I’m grateful that I was mostly able to set up a schedule that was sustainable and accessible for me. I hope this is helpful for others who deal with similar differences and limitations. 

Who gets to survive and 'rewild' themselves?

I recently read a book on human “rewilding,” the idea that modern, first-world peoples should learn ancestral survival skills, such as foraging for food, making friction fires, hunting and breaking down animals to make use of meat, bones, skin, building shelter, etc. I’m not going to name the book or the author because I don’t want to seem like I am pointing fingers at anyone in particular, but as a disabled person I came away with a lot of concerns. 

A major theme of the book is that climate change is coming, and it may very well be devastating to modern culture. We will need to have these survival skills, otherwise the human race may not carry on very well. It also argues that the kind of survivalism that’s popular now, the bushcraft in which a solo person, usually a white able-bodied man, treks out into the wilderness on their own and survives for some length of time, isn’t sustainable for human culture. 

Most people can’t do everything needed to survive: build structures, hunt and forage, cook food, make and repair clothing, etc., especially if they’re alone and become ill or injured. Humans have traditionally lived in groups or small villages, where everyone worked together to keep their community afloat. Don’t get me wrong; I have spent hours watching dudes on YouTube dig and build their own shelters in the woods, and part of me wishes I could do that, too. But it’s not a strategy for long-term success as a species. 

But let me go back to the book for a moment. The author briefly mentions that learning and using early-human survival skills might not be available or accessible to everyone, particularly the ill or disabled. They touch on it, but quickly move on. So where does that leave the many of us who rely on daily medications, treatments  and regular access to healthcare? 

Let’s say we go through a climate apocalypse. Absolutely, there are plant medicines that can treat a wide range of illnesses and chronic conditions, but even they can only go so far. What will humankind do to help people who need dialysis, insulin, respirators, cancer treatment, or other life-maintaining medical care? 

Lamar Johnson as Henry and Keivonn Woodard as Sam in HBO’s “The Last of Us.”

I know HBO’s “The Last of Us” is fiction, but I can’t help thinking about the brothers, Henry and Sam, and how Henry became an informant to the federal police in exchange for leukemia treatment for Sam. Maybe our future won’t be so dystopian, but I do wonder if my life, post-climate catastrophe, will involve hoarding meds or taking desiccated pig thyroid and berberine which, I guess, is available in a wide range of plants. And will I have to take care of that on my own, or will the larger culture be willing to provide for its disabled and ill?

Early in the Covid-19 pandemic, disabled and chronically ill folks led the way in terms of masking, socializing online, and mutual aid. Even before most lockdowns started, disability activist Leah Lakshmi Piepzna-Samarasinha put together a guide called “Half Assed Disabled Prepper Tips for Preparing for a Coronavirus Quarantine,” which covered how to store two weeks’ worth of water; how to stock up on shelf-stable foods; power and fuel; sanitation and medical supplies; and much more. Piepzna-Samarasinha released their book “The Future is Disabled” in October 2022, asserting that the future is going to have disabled people in it, no matter what that future looks like. And indeed, after three and a half years of Covid-19 and Long Covid, more people are disabled now on this side of the pandemic. For most people, particularly as we age, disability is an inevitability. 

Disabled and chronically ill people have a variety of survival skills in their tool boxes that non-disabled, non-ill people largely don’t have. So it’s frustrating to see a book on rewilding and survival written with almost no consideration for those perspectives, especially a book written during a global pandemic that disabled 1 in 13 of those who contracted Covid-19.

Regular readers know that I often return to the intersection of disability and access to nature. I wrote about it after I read Robert Macfarlane’s “The Old Ways” early last year. I returned to it, internally, when reading Sharon Blackie’s “If Women Rose Rooted,” in which she describes leaving cities and the corporate world behind in favor of a series of remote homesteads that, while peaceful and restorative, required a lot of physical labor to survive in, and a lot of travel to connect with things only available in urban centers. 

It’s great to talk and write about the ways in which rural life or nature trekking is healing to the human body and mind, but you have to think about who might actually benefit most from having such opportunities — and the many barriers keeping those people, in particular, from accessing such a life. I often wonder if I’d be less chronically ill if I could live in a more remote, woodsy or “natural” environment, but it’d be a gamble finding out. 

Another YouTuber I enjoy a lot is Kalle Flodin, who lives in a cabin in a Swedish forest. He gets his water from a pond on his property (though he has to break the ice in winter), and he’s lucky to be able to grocery-shop nearby and have neighbors who help him with large-scale projects. But his is clearly a physically arduous life of building and maintaining structures, dragging heavy objects up his long driveway when delivery people won’t drive up it, etc. His videos are idyllic and calm, but a recent one asked, “What if More People Lived Like This?” 

Images courtesy Kalle Flodin.

I commented that his lifestyle isn’t available to all of us. One commenter replied to me, “I live with numerous chronic illnesses alone in the forest.” But when I asked them how, they just said “healthy living,” adding that they didn’t need to see doctors very often. They said, “I find that worrying about health makes health worse — so I don't. It simply is what it is. I recommend that approach.” I replied, “Many of us would die if we followed that advice.” And then they said, “If you need a doctor every week, simply live close to one,” which pretty much proved my point. 

The conversation in my mind is joined by other books, including “The Hidden Life of Trees” by Peter Wohlleben. In the book, he writes about the complex ways in which trees communicate with one another, including through underground mycelial networks and chemicals released into the air. The air in forests benefits humans, too; it’s richer in oxygen and it’s cleaner, because the trees act as huge air filters. Some trees release phytoncides, which kill germs in the air and soil. 

It seems as though all humans could benefit from more time among trees, particularly forests or even small, naturally formed woodland areas (trees planted in forestry contexts often can’t communicate with or look out for each other). But I wonder whether natural, wooded environments wouldn’t be especially beneficial to people whose nervous and immune systems are off the rails, whether through trauma/oppression or illness or both. In other words, could disabled and chronically ill people benefit even more from living closer to the land? And if so, how do we open up conversations and skill-building around survivalism and rewilding to include these considerations? 

Is there a way to create rural, nature-filled communities where people can live off the land, not have to trek for miles on aching legs to secure food or water, maintain access to life-sustaining medications and treatments, and meet with a range of medical experts who can diagnose hard-to-pin-down chronic ailments? Is there a way to make the world of rewilding and climate-survivalism truly accessible — and also welcoming to people with different abilities and needs? 

I don’t know the answer. Some ancient humans sacrificed disabled community members — and others with certain medical conditions, or even simple infections, wouldn’t have survived before the advent of antibiotics and other modern treatments. I don’t think we have to go back to that. But I also hope that it won’t just be up to disabled and chronically ill people to determine how we will survive in the future. 

Battle, Zoom, Compassion, Chronic, Fatigue

“The Morphine’s Girl”, Santiago Rusinol, 1894.

I’ve spent the past month or so coping with deep, relentless fatigue. I wasn’t necessarily sleepy or sleep-deprived. My bones felt heavy, my body as if it were moving through thick mud, my head too light and wobbly. I tried resting. I tried napping. It would get a tiny bit better, and then it would get worse again. Nothing really helped. 

A couple of weeks into it, I was diagnosed with a minor infection, and thought maybe that was the explanation. But clearing the infection didn’t resolve the fatigue. I already deal with a baseline amount of daily fatigue and have to ration my spoons carefully to get done the things I want and need to get done. But this took most of my remaining spoons away. A lot of things piled up. I tried not to feel guilty. I failed. 

During this period, the disability rights activist Jessica Kellgren-Fozard released a video on pacing when you have conditions that limit your energy levels. Maybe I’m just not pacing myself enough, I thought. I need to rest more, build back that store of energy like she says. I tried. My tank remained nearly empty. 

In late March, I went to a retreat that I’d been looking forward to for ages. Although there were opportunities to make art, write, and engage in gentle movement, I wasn’t up for any of it. I spent mealtimes trying to catch up with friends and fond acquaintances. Otherwise, I mostly laid in the narrow bed in my room and looked out the window at the back garden and trees. 

At home, it was much the same. I spent the bulk of many days in bed, either writing, chatting with friends online, or watching TV shows and movies, watching the birds and butterflies and squirrels and bumblebees outside in the garden, wishing I had the energy to go for a walk or tend to the plants outside. 

Even so, I managed to get a few things done. I finished a couple of sewing projects and filmed them, to make videos about the process. I picked away at a new draft of the book I’m writing, about San Francisco’s forgotten cemeteries. I researched potential publishers and started a book proposal. I wrote an article that I’ve been researching, off and on, for a few months, and I started research on a few other ideas. Maybe I should have rested more. But I also wanted to do things that make me happy, and these are things that make me happy.

I'm sure plenty of other people have said this before, but that whole "only use your bed for sleep and sex" suggestion is ableist. I'm going through some intense fatigue lately and working/reading/etc. from bed is pretty much necessary. #sleep #sleeproutine #chronicillness

— Beth Winegarner (@bethwinegarner) April 1, 2022

Finally, I saw my doctor. I’d put it off because it’s so hard to pin down what causes fatigue, and I wasn’t sure it would be a good use of my limited resources to talk it over with him. We spoke on a video call. He wondered if maybe my sleep quality was worse, but conceded that I probably didn’t suddenly develop sleep apnea. He also wondered aloud whether it might be some kind of post-viral syndrome. I didn’t remember having any particular viruses before the onset of the fatigue, but I’m so well immunized against Covid that I might not notice if I was exposed to it again. Finally, he asked me to come in for a bunch of labwork, including tests for anemia and B-12 and Vitamin D deficiency. 

Although those tests all came back normal, I learned in the interim that another medication I’m taking can cause poor absorption of B-12, and that lack of folate supplementation can also make things worse. As an experiment, I started taking extra B-12, folate and Vitamin D, as well as electrolytes daily. I’m beginning to feel better. Whether it’s because of the supplementation, because whatever was causing the fatigue has run its course, or something else, it’s impossible to say. 

And it’s hard to trust that it will last. When this latest round of fatigue came on, I was just getting my energy back from the Covid-19 booster I got in early December. I’ve written about this before, but each vaccination has caused me some kind of flare that feels like my fibromyalgia kicking up for weeks at a time. This time, it lasted more than two months. Another doctor I’ve seen this year, one who works closely with fibromyalgia patients, confirmed that she’s seen this reaction pretty often. After all, she said, this virus is still new to our systems, and the vaccines kick up a pretty hefty immune response, especially in those of us who have aggressive immune systems to begin with.

One bright spot in all this: One of my favorite writers, Johanna Hedva, released a revised and updated version of their incredible essay, “Sick Woman Theory,” earlier this month. The earlier version created tidal waves of awareness when it came out in 2016, and gave me a lot of language I didn’t have before for my experiences of being in my body. It also seeks to answer the question: “How do you throw a brick through the window of a bank [in other words, engage in meaningful protest] if you can’t get out of bed?”

The revision is accompanied by a new essay, “Why It’s Taking So Long,” about Hedva’s experiences being asked to give talks and teach about Sick Woman Theory since the piece came out, and their struggles to create accessible spaces for those events. Hedva eventually hopes to publish a Sick Woman Theory book, but all of these shenanigans have gotten in the way. Seriously, why would a venue refuse to provide a sign-language translator or audio captions? Or not give a disabled writer enough lead time to deliver on a project? Or not compensate them adequately for their work and/or expenses? This is someone who must already ration their time and energy carefully. It’s a frustrating, and illuminating, read. I hope event organizers are paying attention.

So, here I am, hopefully feeling better. Maybe now is the time for pacing, now that I’ve got some energy to pace, to build back. But there are so many things I want to do.

Please don’t send me notes of pity or regret. This is part of life, and it’s something a lot of people go through. I know such messages mean well, but they have a way of reminding me that many don’t understand what it’s like, outside of the flu or recovering from surgery before bouncing back to full health. It’s a reminder that too many people see disabled life as inferior. It isn’t. It’s just different. 

Coming Out: Fibromyalgia

“When we feel vulnerable sharing something with someone, I think it’s because we are actually judging or shaming ourselves ... And then we’re afraid the other person will as well. We’re afraid they will confirm our worst fears about ourselves. That’s why it’s scary. We fear their rejection because we’re really fearing our own rejection of ourselves.” —Kara Loewenthiel

“The reward for conformity is that everyone likes you but yourself.” —Rita Mae Brown

I have fibromyalgia.

I was formally diagnosed a couple of years ago, but I’ve been living with it in some form since my early 20s. For years I thought it might be something else: rheumatoid arthritis, maybe, or a connective-tissue disorder. The diagnosis surprised me, but over time it has come to make sense. 

The definition of fibromyalgia, as it stands now (the medical world doesn’t really understand it very well yet), is that it’s a neurological condition in which things that shouldn’t hurt do, and things that should only hurt a little hurt a lot. When I injure myself, my body heals but the pain lingers — my nervous system “learns” the pain, then struggles to unlearn it. Fibromyalgia often comes with fatigue, general aches, brain fog, trouble sleeping and other symptoms. For everyone who has it, it’s a bit different. 

This is what it’s like for me: I’m in a little bit of pain every day, somewhere in my body. Often, it’s more than a little pain. Today, it’s focused in a spot next to my right shoulder blade. But I’m achy elsewhere, too — in my shoulders, my arms, my legs, my feet. Sometimes, I also feel like I’m coming down with the flu: my throat and eyes are scratchy, everything aches and I feel like I could sleep for days. I have one or two days like that each month. Even on a good day, my body gets stiff quickly, and standing up when I’ve been sitting a while means walking gingerly until my muscles joints loosen again. 

Fibromyalgia flares often come on when I overdo it, physically or emotionally. If I spend an hour gardening or take a long walk, or even if just have a night of bad sleep, I’ll have flu-like symptoms the next day. It’s similar if I get really upset or stressed out by something. Sometimes it’s worth it — worth it to be fully alive and active in my body or in my emotions, even though I’ll likely feel lousy the next day. But generally I try to do things in moderation. 

To look at me, you wouldn’t guess anything was amiss. This is what it means to be invisibly disabled.

It might sound like I’d be miserable all the time, but I’m not. There are bad days, and there are days when I grieve or feel like I’ll never feel good again, but they are pretty rare. This is my baseline and I’m pretty used to it, just like you’re used to yours. 

The most common treatments for fibromyalgia are anticonvulsants like gabapentin and pregabalin, thought to keep the nervous system from overreacting and causing symptoms (they’re also used to prevent epileptic seizures, and to treat shingles pain). I haven’t tried them, largely because I am so sensitive to medications, and these ones are notorious for being difficult to get used to (and more difficult to come off of if they don’t work). 

Instead, I take low doses of ibuprofen, which helps keep my baseline pain levels down. On bad days I have a whole menu of things to try: stretching, foam rolling or rolling against a pinky ball, THC or CBD tinctures, cannabis salves, heating pad, a bath with epsom salts, massage, chiropractic care, a nap. I’ve tried plenty of other things that don’t help, and I’m not looking for any advice. The best preventatives are good sleep, lots of hydration, and not too much (or too little) exercise or stress. But there’s only so much control I have — which is to say, not much. I’ve spent a lot of time coming to terms with the idea that some days I’ll feel like crap, but they will pass. 

The causes of fibromyalgia are still not well understood, but some research points to chronic stress, especially the kind of stress we may carry if we’ve experienced adversity and trauma before we become adults. It’s nice to see this research making its way into mainstream publications after doctors not taking fibromyalgia seriously for decades.

I’ve kept this to myself for a long time, not wanting to be treated as different or less capable — or conversely as some sort of inspiration, achieving so much in the face of adversity. Ultimately I can’t control what others think, and the older I get, the less energy I have for hiding.