“The spirit indeed is willing, but the flesh is weak.” Lately, I’ve felt that this Bible verse could’ve been written about me and my muscles. The last week or so has served as a reminder that fall fatigue is indeed a real phenomenon. This time of year always plays tricks…
One of the strange mercies of living with myasthenia gravis (MG) is that it teaches you to hold life gently. Every breath and every moment of strength can feel borrowed. MG serves up daily reminders that endurance is grace. Chronic illness makes us students of impermanence and demands that we…
Note: This column describes the author’s own experiences with Ultomiris (ravulizumab-cwvz). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. When I was 8 years old, I spent two years going in and out of Boston Children’s Hospital. During those years,…
I vividly remember sitting in my third-grade classroom near the end of a school year. Sunshine always filled the classroom at the end of the year, particularly by 1 p.m., making it perfect for an afternoon nap. Those days were unbearable because of the heat, but also because the final…
“What you aim at determines what you see.” — Psychologist and author Jordan B. Peterson For centuries, this deceptively simple truth has echoed through philosophy, faith, and medicine. For those of us living with myasthenia gravis (MG), it resonates with force. MG can feel like a thief. It may…
Life with myasthenia gravis (MG) often feels unpredictable. One day, my legs are steady enough to walk Pablo, my French bulldog, around the block. The next day, weakness makes standing at the kitchen counter a challenge. Some of the muscles MG attacks control breathing, swallowing, lifting, and keeping one’s head…
Living with myasthenia gravis (MG) has taught me that words are as important as medicine. The language we use to describe illness can shape how others perceive us and how we view ourselves. Doctors have a vocabulary developed through years of education and experience, while our loved ones…
Six years ago, before my myasthenia gravis (MG) diagnosis, I decided that I wanted to be more focused and intentional. To assist with this, I bought an app for my Apple Watch that reminds me every two hours to pause and spend a minute focusing on my breath. During…
Many companions accompany us on life’s journey, but perhaps the most constant of these is uncertainty. None of us knows what curveballs may come our way from one day to the next. Most people can relegate thoughts of curveballs to a dim recess in their minds, but those of us…
On April 14, 1912, shortly before midnight, the Titanic struck an iceberg that would sink the ship and bring more than 1,500 people down to watery graves. Decades later, on Dec. 28, 1978, United Airlines Flight 173 circled in the sky south of Portland International Airport…
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