[Note from Frolic: We’re so excited to welcome author Jean Meltzer to the site today. She’s sharing her experience writing with chronic illness. Take it away, Jean!]
Over a decade ago, I told myself I was going to write a book. It was a point in my life where my chronic illness, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) had taken a turn for the worse, and I found myself needing to re-envision my life once again. At the time, I had no idea if I had the skills, or chutzpah, needed to break into traditional publishing. But I told myself it didn’t matter. If I could only get down one sentence a day–if it took me ten years to finish a manuscript—I was going to become a traditionally published author.
Looking back on it now, I had no idea how prophetic that vision would become. It did, indeed, take me over a decade to see my first book baby into the world. THE MATZAH BALL, an #ownvoices Hanukkah rom-com about a chronically-ill nice Jewish girl, will be published by MIRA on September 28th, 2021. Though that process was far more winding, and difficult, then I ever could have imagined, I am here to share some of what I learned about writing a book with chronic illness.
Health Comes First
One of the most important lessons I learned over the last decade was that I need to make health my number one priority. If I don’t, I almost always get sicker. That means that my health comes before my husband, my housework, my dog… and yes, even my writing. On my better days, I try to balance my schedule so that I can take a walk, meditate and eat healthy. I see writing as part of my wellness regimen. I also try to stagger events, needs and deadlines, so that I always have time built in for recouping.
If I start feeling my good hours diminishing, I know I need to take a step back. Sometimes that means taking a few days off, too. It’s so important to rest on the bad days. That being said, chronic illness is not an exact science. You can do everything right, and still get sicker. You can do everything wrong, and get better. Worsening chronic illness is not a moral failing.
Comparison is the Thief of Joy
Twenty years of chronic illness has led me to believe that healthy people and sick people exist on two separate binaries. Healthy people might be easily able to get twelve good hours a day. They might be able to work full-time, raise a family, and still find time to write in those wee hours of morning. This full-time schedule does not exist for me. On a good day, I get about 7 functional hours. On a bad day, I get about forty-five minutes.
One of the worst things a chronically ill person can do is compare themselves to healthy people and their accomplishments. It’s also not a great idea to compare yourself to other chronically ill people, as our bodies—like our disease processes— are all so different! It’s okay to go at your own pace. It’s okay to place your needs, and the needs of your body, before your writing. Be proud of yourself on those days where you have only written one line. You have accomplished something extraordinary.
Honesty is the Best Policy
I made a mistake with my first agent. I didn’t tell her I was sick. And so, when my disease swerved into the worst flare of my life—and I spent two years, only able to write about thirty pages worth of words—we never had a conversation about why. Needless to say, that business relationship didn’t work out.
When I wound up signing with my second agents, I rectified this situation immediately. I was completely honest, explaining my backstory and trajectory, which was then also passed onto any publisher interested in THE MATZAH BALL. There is nothing scarier to a chronically-ill person than a deadline. But I feel much safer navigating the swings of my disability against a publishing schedule knowing everyone is informed.
Sadly, There is Always a Risk
I have been an advocate for ME/CFS since 2006. I’ve run groups online, written countless letters to government officials, and met with members of Senate and Congress. I understand the importance of standing up and telling your story. However, I would be remiss not to point out the obvious here. Coming out of the chronic-illness closet carries a risk.
While society has gotten much better at acknowledging our struggles, there can still be backlash from friends and family. More troubling, it could affect your future ability to get health insurance, life insurance, or even a job. You may also find yourself the target of harassment by online trolls. I’m at a place in my life where I’m willing to accept that risk. But if you are not in a place where it is safe for you to be open about your diagnosis, be careful about what you place online, share with others, or publish under your own name.
Write Your Book for You
Here’s a little-known fact about me. When I sat down to write The Matzah Ball, I didn’t care whether or not it would ever get published. Do not tie your self-worth into things you have no control over, or economic measures of success. Write your book because it gives you joy. Write your book because it takes you away from your body, and your pain, and the drudgery of your daily life with chronic illness. Write your book because you have something valuable to say—and because you exist. There is nothing more affirming to the human experience then telling a story.
About the Author:
Jean Meltzer studied dramatic writing at NYU Tisch and has earned numerous awards for her work in television, including a daytime Emmy. Like her protagonist, Jean is also a chronically-ill and disabled Jewish woman. She is an outspoken advocate for ME/CFS (Chronic Fatigue Syndrome), has attended visibility actions in Washington DC, meeting with members of Senate and Congress to raise funds for ME/CFS. She inspires 9,000 followers on WW Connect to live their best life, come out of the chronic illness closet, and embrace the hashtag #chronicallyfabulous. Also, while she was raised in what would be considered a secular home, she grew up kosher and attended Hebrew School. She spent five years in rabbinical school before her chronic illness forced her to withdraw, and her father told her she should write a book―just not a Jewish one because no one reads those. THE MATZAH BALL is her first novel.
The Matzah Ball by Jean Meltzer, out now!
Oy! to the world
Rachel Rubenstein-Goldblatt is a nice Jewish girl with a shameful secret: she loves Christmas. For a decade she’s hidden her career as a Christmas romance novelist from her family. Her talent has made her a bestseller even as her chronic illness has always kept the kind of love she writes about out of reach.
But when her diversity-conscious publisher insists she write a Hanukkah romance, her well of inspiration suddenly runs dry. Hanukkah’s not magical. It’s not merry. It’s not Christmas. Desperate not to lose her contract, Rachel’s determined to find her muse at the Matzah Ball, a Jewish music celebration on the last night of Hanukkah, even if it means working with her summer camp archenemy—Jacob Greenberg.
Though Rachel and Jacob haven’t seen each other since they were kids, their grudge still glows brighter than a menorah. But as they spend more time together, Rachel finds herself drawn to Hanukkah—and Jacob—in a way she never expected. Maybe this holiday of lights will be the spark she needed to set her heart ablaze.