My feet fall into a resonant rhythm as I follow the unexpected light of the November sun. Its radiance is muted, as if wrapped in a thick, textured cloth. But as I make my way up the grassy knoll, its white light suddenly pierces the veil. Against the spectral sky, bare limbs bow in the wind, greeting me like old friends. My verdant sanctuary stands stripped to its hollow bones–vulnerable now, … [Read more...]
A year ago yesterday, tests to monitor my heart landed me in the hospital with full-body muscle contractions, quirky contortions, and breathing difficulties, marking my first major dystonia storm in more than five years. I have lived with dystonia for a decade now; last month marked our 10th anniversary together. Those first few years were especially challenging (and included a 5-day hospital stay … [Read more...]
Ten years a slave– To tangled limbs And a torquing spine, To a broken medical system And neural network gone offline Ten years an observer– Of the quirky, jerky movement of a marionette Compensatorily adopted two decades ago After a bike/car accident left my Body and soul bruised and bowed Ten years a student– Of physiology and the human mind; Acquiring an armchair PhD In … [Read more...]
Two months ago, my life with dystonia ‘got flipped turned upside down’ and i’ve been on a rollercoaster ride of recovery from it ever since. Seemingly overnight, my plush California King-sized bed transformed into the terrifying setting for violent contortions that wiped me out for much of the next day. Accompanying this sudden change, the sights that normally inspired me as a writer and the … [Read more...]
Nine months ago, when my husband and I were moving into the three-story condominium we’re currently renting, I was more than a wee bit concerned with how I’d navigate all those levels. My office would on the top floor, with our bedroom, main bathroom, and laundry beneath me. Two flights of stairs stood between my desk and the kitchen sink, and the ground floor led down another flight of stairs to … [Read more...]
This humble, human vessel I call my own always seems to be brimming over with an abundance of gratitude this time of year. As a December baby, the first day of New Year on the Gregorian calendar shortly follows my own completed rotation around the sun. As a result, the final month of the year becomes an extended period of personal reflection, retrospection and appreciation for the experiences and … [Read more...]
A month ago today, I went under anesthesia for what is misleadingly classified as a minor surgery to try to get to the bottom of abnormal bleeding from my lady parts. In between two trips and pre-op appointments with both my gynecological surgeon and my primary care doctor, I spent most of October preparing for a surgery that I suspected would affect me more than the average bear, as most … [Read more...]
With an estimated 1.6 million people living with either Crohn’s disease or ulcerative colitis in the United States, there is increasing need to research safe and effective ways to manage debilitating symptoms that–pardon the expression–hit patients right in the gut. Crohn’s and ulcerative colitis are considered the two main types of inflammatory bowel disease (IBD), and they manifest differently … [Read more...]
This Saturday, my husband and I are heading to Roger Williams Zoo in Providence, RI, for the very first time, and I can’t even explain how much I’m looking forward to this unique experience. It’s been more than a decade since I last visited a major zoo, but getting the chance to have close-up encounters with snow leopards and giraffes isn’t the main reason that I’m itching to get to Providence. … [Read more...]
Dr. Joaquin Farias, a leading specialist in treating dystonia, has been helping people with this debilitating movement disorder to recover control over their brains, bodies and lives for more than 20 years. As a featured speaker at the 2018 international conference on Movement: Brain, Body and Cognition, held July 27-29 at Harvard University School of Medicine, he gave an enlightening talk that … [Read more...]