Tag: chronic illness

Psst…spread the word


Pretty Cool… My research and stories were recently highlighted in “Conquer”, a newsletter which provides news and support for people living with Myasthenia gravis. MG is an autoimmune disorder in which communication between the nerve and muscle is impaired, causing severe muscle weakness. Really Cool… Through the my post on the writeonfighton Facebook page, a […]

Health Update#3: I’m still doing okay.


Health Update #3 In every situation, life is asking us a question, and our actions are the answer. Our job is simply to answer well. ~ Ryan Holiday People have been asking how I’m feeling lately. So here we go: I’m doing okay. I get it, “I’m doing okay” is the response I gave you […]

Going back to Bethesda


I started writing this post in a hotel room in Gaithersburg, Maryland. I’m thinking about the last time I was in Maryland–three years ago. How I had so much too say. So much too write. And how sometimes going back to a place that haunts you is the only way to find peace. Today I […]

How serious am I about this writing stuff?


How serious am I about this writing stuff? When I got sick 5 years ago, and the prospect of death was suddenly real, I became obsessed with discovering my story. Who was I? What did I want to accomplish in life?  Can I find meaning in my suffering? Does my illness ostracize me or does […]

I’m hungover.


I’m hungover. Except I haven’t had a drink almost 3 months. My head is pounding and I’m dizzy and nauseous as if it was 1999 and last night I chased a bottle of strawberry Boone’s Farm with 10 Natty Lights. I stagger to the shower. Shower. Towel off. Get changed. Get coffee, started feeling sorry […]

The Danger of Not Telling Your Story


As a writer and a person with a degenerative brain condition, I often tumble into a state of what-will-they-say-about-me paranoia. A state where you hold your breath as you wrestle with the sinking feeling of eternal doom. What has helped me breathe and escape such doom is telling my story. I’ve learned that showing who […]

The morning after a neurologist found my brain damage I went to work. The story of the blue collar patient


Cindy told me to stay home. Put my feet up. Watch daytime television. Rest. But I insisted on going to work. “I have too much work to do.” I was teaching Cormac McCarthy’s novel The Road. Set in a post-apocalyptic world, the novel chronicles a father-son relationship and argues a father’s chief duty, no matter […]

It was both funny and painful to watch. "Everything hurts."


Three days after the race and Cindy is walking as if she has a pair of wooden legs. “Everything hurts. My legs, my back, my ribs.” I stand at the kitchen sink and watch Cindy open the cabinet, reach for a glass, and wince. She draws a breath. “I should’ve trained for the race.” She […]

The race I did not run.


On June 2nd I marked September 23rd on my calendar. On September 23rd I planned to run my first 5k. An act of defiance of sorts. Defying both body and brain. Proving that I could physically and mentally triumph over 5 years of living with cerebellar ataxia, sarcoidosis, nystagmas, enlarged lymph nodes, vertigo, muscle spasms, […]

Health Update: It's a migraine but it's complicated


On Monday a neurologist diagnosed me with a lingering migraine. Dizziness, nausea, stabbing headaches, sensitivity to light are symptoms aligned with a migraine. This is the first time I have been diagnosed with a migraine. The neurologist ordered some blood work and issued prescriptions for a brain MRI to see if the cerebellum has further […]