20th Anniversary Interviews - Part 3: Writing with Disabilities and Chronic Illness

In this interview, we talked to participant Jessi Smith about what it’s like to write with disabilities and chronic illness.

Q: What is your most memorable NaNoWriMo moment?

A: I got really sick in 2015/16 and have been battling chronic conditions that have threatened to take my ability to read and write. This year I’ve had many close encounters with death that have made me reprioritize my energy to focus on things that are important to me. NaNoWriMo is one of those things! Over the past few years I have been learning new ways to adapt my writing to fit my disabilities. Over the course of October I’ve gathered together a group of chronically ill and disabled writers from all over the country who thought that their writing years were forever in the past to support each other in our NaNoWriMo journey. Many of us were published authors before chronic illness degraded our fine motor skills, memories, and cognitive abilities. This year we are working together to recapture our strong creative voices and lift each other up to achieve our writing dream of completing NaNoWriMo 2019! Finding this group of talented and driven writers has been my favorite NaNoWriMo memory. Without NaNoWriMo we would never have risked such a dangerous and exhausting journey to reclaim the words that have been stolen by our chronic illnesses. NaNoWriMo has offered us the structure, support, and community we need to find the strength to tell our stories.

Q: How did you go about finding other disabled writers for this project?

A: The disabled and chronically ill communities are super active on social media as many of us are too sick to leave the house. I have a large following on Instagram (@disablednotdefeated) and when I started talking about my desire to return to writing for NaNoWriMo on my story the messages started pouring in. I was blown away by how many of my chronically ill and disabled followers have been forced to set aside careers in writing and creative passion projects when they became sick. Many of them were afraid they would never be able to write again because of the ways in which their disabilities affected their memory, fine motor skills, and stamina. All of them shared the same dream but needed direction, ideas about how to adapt their approach to fit their new limitations, and encouragement to follow through. So I started the Chronic Illness Writing Club on Instagram with a goal to support each other through NaNoWriMo and beyond!

Q: What are some of the ways you’ve learned to adapt to your disabilities?

A: We’re a little over half way through the month and this Nanowrimo has been one of the hardest writing experiences of my life. While I’ve participated and won Nanowrimo 9 times as a teenager, adapting to writing with chronic illnesses had been a whole new beast. Now the hurdles I face aren’t just about finding time to fit noveling in with my busy schedule, it’s also about coaxing my hands to type when they’re shaking too hard to control, it’s about timing my writing sessions around my pain medications so that I have more energy to thing creatively, it’s about picking myself back up after I pushed too hard and still finding the energy to write again. It’s about navigating medical emergencies, doctors appointments, and hospitalizations. It’s about refusing to give up on my story and myself.

I am bed bound which means I have a lot of time alone with my computer. This is both a blessing and a curse. I have very little energy and it is easy for me to blow it all by writing early in the day which leaves no energy for doctors visits, working with my service dog Atlas, and everyday care. Knowing when to work and when to rest has been a challenge and my caregiver has had to take my computer away more than once to force me to rest.

Q: Did you encounter any particularly noteworthy challenges?

A: One of the (12) conditions I’ve been diagnosed with over the past 7 years (I’m an overachiever) is a seizure condition which causes neurological issues that make memory a HUGE hurdle in my writing. I’ve always been a pantser but that has made this NaNoWriMo an extra challenge.

I have adapted by writing in shorter chunks 1,000-3,000 words. I also keep a running notes tab where I add new settings, character traits, descriptions, ideas for the plot as it progresses, inconsistencies I need to go back and fix during revision, and anything mysterious that I’ve left unanswered. It has saved me hours of combing through my story to remember a characters name or what color I made their hair.

A lot of my conditions cause severe exhaustion and cognitive processing issues. I have a condition called Postural Orthostatic Tachycardia Syndrome which effects my blood pressure and heart rate. I’ve learned to help jump start my brain when things are moving sluggishly by sitting up which causes my heart rate to spike giving me a burst of energy and clearing my mind. While it is exhausting in the long run it can definitely help give me a boost. This is where NanoSprints twitter comes in handy to get my word count jumpstarted!

I knew when I started Nano that I was due for an infusion of low dose chemotherapy at the end of November. The closer I get to my infusion date the more sick I become. Knowing that the last few weeks would be the hardest I raced to pad my word count to give myself time to recover. While I have fallen a few days behind this week as my body grows weaker I feel so proud of all I’ve been able to accomplish. Whether I win or not, participating in
NaNoWriMo this year has been life changing. I have built a stronger community, found my creative voice, and learned that even with the challenges of my chronic illnesses and disability I am capable of incredible things.

Jessi Smith is a full-time composer, actor, writer and musician. She’s been participating in NaNoWriMo since 2003.

Follow her on Instagram!