What quilting taught me about love in life with myasthenia gravis

My mother was not a quilter. In 87 years, I don’t think she ever gave quilts a thought. It wasn’t until I was an adult living in the South that I became aware of the craft’s popularity. I learned about quilting weekends, magazines, stores, group chats, and more. I saw the intricacies in each piece and the skill required to do this work. A quilter, like an author or artist, has a medium through which to express thoughts and emotions. As someone who no longer even attempts an Ikea assembly, I find quilting as amazing as the construction of the pyramids.

My first real exposure to them was in June 1988, when the AIDS Memorial Quilt came to Boston. It was the most moving experience of my early adulthood, demonstrating how simple fabrics can tell a story. The quilt assembled the lost loves, physical pain, and emotional toll of the AIDS crisis, yet it also brought together the laughter, exuberance, wit, and intelligence of those whose names were on its panels.

Though it originated in the U.S., the AIDS Quilt toured the world, creating a catharsis very much needed for a world in pain.

So how does any of this relate to myasthenia gravis (MG)?

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The panels of my quilt

July 1, 2026, marked the sixth anniversary of my MG diagnosis. I regularly reflect on my life’s journey, so when July 1 rolled around, I spent time considering how illness has changed my life. This was when quilting came to mind.

Chronic illnesses such as MG change our relationship with our body. I can no longer assume that each day will be packed with energy and stimulated by constant interaction with others. That’s a panel for my quilt.

MG required that I educate myself about my body in ways that bewildered me. I had to learn about plasmapheresis, intravenous immunoglobulin therapy, avascular necrosis, and so much more. The body becomes unfamiliar territory when illness sets in. When healthy, we tend to treat the mind as sovereign and the body as servant. Illness inverts this relationship. Another panel for my quilt.

In “Illness as Metaphor,” Susan Sontag describes the world in which the chronically ill live: “Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick.”
A third panel.

Chronic illness can affect one’s relationships. Some friends will fade into the background — not because of a disagreement, but simply because their worlds have become so different, and neither person feels as comfortable as before. More importantly, other relationships deepen. When someone sits by your side as you struggle with pain that is almost too much to bear, and assures you things will be OK, something unbreakable is forged. Panel number four.

I guess that love will be the predominant characteristic of my MG quilt. If we’re lucky, or blessed, the love we exchange with others gets us through the difficult days. That’s the fifth wonderful panel.

Since July 2020, I have lived by the Apostle Paul’s words: “When I was a child, I used to speak like a child, think like a child, reason like a child; when I became a man, I did away with childish things.” I don’t think I was childish six years ago. But illness takes away any residual innocence. Perhaps some blue tones for panel six.

I’ll let Paul finish things: “For now we see in a mirror dimly, but then face to face. Now I know in part; then I shall know fully, even as I have been fully known.” All of us are quilters, though none of us will see the finished product in this world. The dim mirror prevents it. But that final panel will one day find its place.

Paradoxically, living with MG over the past six years has reinforced the centrality of love to a happy life.

Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.