Holding an event when chronic illness is unpredictable requires being prepared

Before my flare-up in June, I was invited to join my favorite local bookstore, Sidetrack Bookshop, to do an author event for the city’s Pride weekend. The store is in Royal Oak, Michigan, which celebrates Pride at the end of July, dovetailing with Disability Pride Month. I was thrilled to do a workshop centered on being queer and disabled and writing queer romance with disabled characters, all while balancing my own chronic illness.

I was afraid to say yes to the invitation, ironically, because of my disabilities. How could I agree to an event several weeks in advance when I didn’t know how I’d feel? How could I set myself up for success during a year of unexpected flares? Chronic illness makes my every day unpredictable.

My hypoparathyroidism can cause any number of symptoms, including fatigue, muscle spasms, brain fog, and anxiety. My comorbidities, which include myofascial pain syndrome and occipital neuralgia, can give me debilitating migraine-like symptoms. This is a problem when doing a live presentation and book signing.

After talking over my ideas with my chronic illness community, I decided to invite my friend Jane Kolven, a local queer author and LGBTQ+ publishing historian, to join me for the event. We decided that the workshop would be more of a discussion instead of an interview, allowing Jane to guide the conversation. She could share in answering questions and add her own stories, contributing more if my brain fog or pain symptoms were high that day.

Recommended Reading

July 3, 2026 by Heather Novak

This diagnosis anniversary, I’m learning not to blame myself

Jane and I talked multiple times prior to the event, made a list of questions to explore and to avoid, and I sketched out bullet point answers. With a road map to follow and our joint experience, I was confident we could easily navigate the evening. We also planned quiet signals — like placing a pink sticky note on my chair arm — if I was struggling or needed a break.

I had gotten through the worst of my flare two weeks before the event, only to meet an unforeseen natural disaster: an unprecedented plume of wildfire smoke settled over Michigan. Our air quality index reached hazardous levels, the scale topping out at over 500. I had a significant asthmatic reaction and became quite ill despite being indoors with an air purifier.

I hadn’t prepared for this.

Heather Novak, fourth from left, is joined by writer friends at her recent book signing at Sidetrack Bookshop in Royal Oak, Michigan. From left, Aliza Mann, Reem Kashat, Jane Kolven, Heather Novak, Dana Corbit Nussio, and Maggie Eliot. (Courtesy of Heather Novak)

After a week of struggling, I met with my medical team for guidance. Could I and should I continue with the book signing? The smoke had eased a bit but lingered, with an uncertain forecast.

A quick physical exam confirmed that while I was still coughing and inflamed, my lungs were stable. Blood work showed my calcium levels were in range. My pain was manageable. My anxiety was extremely heightened, but emergency sessions with my cognitive behavioral therapist and my eye movement desensitization and reprocessing therapist helped me find my footing.

We decided that as long as it was safe for me to leave the house — with the smoke staying below the “unhealthy” range and the air quality index under 150 — I would continue with the event.

I’m happy to report that all of my preparations paid off. The smoke cleared out for the day, and my book and chronic illness community filled the seats at my signing. There are always things that can’t be planned for that challenge me in new ways (like someone playing a piano on the sidewalk for the entirety of my talk). Keeping myself and the audience focused through the performance was a twist, but I managed to do it with Jane’s expert guidance. We had a lot of fun and it was a highlight of my year.

I hadn’t done a book event since last October, and it was amazing to reconnect with readers, writers, and friends. I’m also happy to have an event model that is flexible and successful to use in the future. Chronic illness is unpredictable, but thanks to creative problem-solving and extensive planning, I was able to do something pretty amazing.

Note: Hypoparathyroidism News is a strictly news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hypoparathyroidism News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hypoparathyroidism.