Together — Mark Harrington

Living with a rare disease is difficult enough, but in the United States, patients fight not only their illness, but also the healthcare system that’s supposed to help them. I was diagnosed with myasthenia gravis (MG) five years ago this month. Managing it requires specialized care, regular…

This is a letter to all those who read and appreciate the work of Bionews, the parent company of this website. Like you, I am a member of the rare disease community, and writing a column about myasthenia gravis (MG) has lightened some of the darker moments of…

Grief’s companion is pain. But in that pain, we can find richness. Holding my mother’s hand as she took her last breath was incredibly painful, but also one of the finest moments of my life. I was able to be with her as she exited this world, just as she…

I’m not the first guy to discover that myasthenia gravis (MG) deserves membership in the select group known as invisible illnesses. Lately, I’ve been thinking about the impact that life with such an illness has on a person’s emotional health. I don’t want to end up in a dismal spot.

It wasn’t my intention to write a column about exhaustion, fatigue, and the part they play in my life with myasthenia gravis (MG). But here’s what happened. I woke up yesterday and went about my usual routine. I ate breakfast, showered, shaved, and dressed. Then I sat at my…

In the years since my myasthenia gravis (MG) diagnosis, I’ve learned to live with certain remarks that, though well-intended, can be hurtful. In conversations with other MG patients, I’ve heard about experiences like mine. No matter what we do — buying groceries, tying our shoes, breathing — someone is…

Since 2020, I’ve been traveling along the myasthenia gravis (MG) road. Sometimes it’s filled with pain, as it was in 2021. We don’t usually think of MG as a physically painful disease. However, the effects of one of the main drugs used to control it, prednisone, can cause…

Chef Marco Pierre White once observed that “a chef’s palate is born out of his childhood, and one thing all chefs have in common is a mother who can cook.” My mother wasn’t fond of cooking, and while she had a palate for only the best food, my dad…

1 Kings 19 tells the story of the prophet Elijah’s search to encounter God. Elijah looks for God in a great and powerful wind, an earthquake, and a fire, but has no success until he hears a “gentle whisper.” It turns out that God’s presence is quiet and…

Julian of Norwich’s “Revelations of Divine Love” — which she’d originally recorded in 1373 — was first published in 1670. Still in print, this classic of Christian mysticism has influenced unknowable numbers of readers, myself included. I’d like to share how this book has affected my personal philosophy and…

Note: This column describes the author’s own experiences with several medications, including Ultomiris (ravulizumab-cwvz). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Ecclesiastes 3:15 (KJV) reads in part, “That which hath been is now; and that which is to…

Published in 1759, Voltaire’s satirical novella “Candide” follows the adventures of its protagonist as he travels the world. Along the way, Candide encounters the suffering, misfortune, and ambiguity that is characteristic of human life. A college philosophy course was my introduction to this masterpiece. I can visualize myself walking across…