We’ll be together again and myasthenia gravis will be gone

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 learn to let go, even while our hearts still cling. I’ve come to see that lesson reflected not only in my body, but also in the lives and losses of those I’ve loved.

A couple of weeks ago, I attended a memorial service for a woman whose courage and gentleness shaped my world for nearly three decades. The gathering honored my friend, Patty, who passed away in late September.

Patty grew up on a Pennsylvania farm. After college, she worked in international business and spent several years in China. Teaching was a second career, and she developed a passion for it. We met when we were both teaching at Seagoville High School in Dallas. Our classrooms were side by side, and we became friends.

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Seven years ago, just before Thanksgiving, her soulmate, Rod, collapsed and, within hours, was on life support. I sat beside Patty as machines kept him alive. She begged him to wake up.

“We were supposed to grow old together,” she sobbed. When I told her that letting him go would be an act of love, she said, “I just want one more night with him. Then I’ll do it.”

She had that night. The next day, life support was withdrawn, and Rod slipped away.

Patty was never quite the same after that. She carried her grief quietly. Five years after Rod’s death, her only relative, a sister, was diagnosed with breast cancer. Patty tended to her sister, traveling between Dallas and Pennsylvania, living by duty and devotion. When her sister died, she bore her immense sorrow with quiet dignity.

The last time I saw Patty was the week before Thanksgiving in 2024. We attended a Methodist “Love Feast” at a local church. We stood in the parking lot after the dinner and talked about loss. She told me she admired how I had handled MG. The hospital stays, the uncertainty, the weakness that sometimes left me gasping for air — things that I’ve always wanted to forget inspired her as she dealt with her losses.

I was taken aback. I always thought she had a more difficult life than I did, and I admired how she gave herself to others, even as life kept taking from her.

Not long after that day, Patty withdrew from her friends. We learned that she’d been diagnosed with stage 4 pancreatic cancer. She asked that no one visit, and although I really wanted to see her and felt I wasn’t being the best of friends, I honored her wish. It’s strange. I was the one with the frightening diagnosis, yet she was the one who died. I’ve felt guilty about that. Survivor’s guilt wears many disguises.

At her memorial, the final song was “Unchained Melody.” When the line “I’ve hungered for your touch” filled the sanctuary, I thought of all the hands I’ve held and had to release. My parents, some students, friends, and now Patty have left the stage, and it can be lonely remaining. Love, I’ve learned, doesn’t end. It only changes its address.

“Love is strong as death,” the scripture says. It doesn’t vanish. It abides, even when bodies fail and voices fall silent.

Both MG and grief demand surrender. We learn to yield to weakness. Loss and mystery demand their share of our hearts. And yet, in that surrender, something stronger is born. As Helen Keller wrote, “What we have once enjoyed we can never lose. … All that we love deeply becomes a part of us.” The same truth sustains me through illness. Each person who has lifted me up, prayed for me, or simply stayed beside me becomes part of my strength.

When I spoke at Patty’s service, I read the poem “Heraclitus,” which ends: “For Death, he taketh all away, but them he cannot take.” I believe that no disease, no loss can erase the good we have done or the love we have given. Then I added a line from A.A. Milne: “We didn’t realize we were making memories; we just knew we were having fun.”

As I left the church, I thought of the closing scene in “Buddenbrooks,” where the family, diminished by loss, clings to one final hope: that beyond this world, we will once again meet those we’ve loved. “There will be a reunion,” one character says with conviction. I believe that. I believe it for Patty, for my parents, and for all of us who wait in fragile faith. I believe it for those living with MG, and those who have slipped beyond its reach.

For in the end, love, like breath, returns to the source from which it came. And one day, when the waiting is over, we’ll find ourselves together again. We’ll be whole, healthy, free from sorrow, strong, and unchained.

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.