My cousins’ love and loyalty remind me to choose connection, not division
None of us can go it alone, especially when living with MG
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Some days it feels as if the world has slipped its moorings. Around the globe, the news is grim and relentless, and living with myasthenia gravis (MG) can intensify that sense of instability. When your body is unpredictable, outside chaos lands harder. Lately, though, I’ve been doing some reflecting.
I come from a large family. I have two siblings and 36 first cousins. Those cousins have 29 spouses and nearly 100 grandchildren among them. We shared 13 aunts and uncles. We also shared something rarer than numbers: closeness. Growing up, we saw one another almost every Sunday. To this day, we remain in frequent contact. We meet up when we can, call often, and check in when life gets heavy. It is a remarkable blessing that has given us love, belonging, and a deep sense of security. It has made our lives better.
That closeness mattered profoundly the first time I was hospitalized due to MG. It was Christmas during the COVID-19 pandemic. I was isolated, with no visitors allowed, and my cousins put together a video to cheer me up. My cousin Jimmy, who lives outside Boston, called and told me that if I needed him, he would be on the next plane. He meant it; there was no exaggeration. Over the years, we’ve shown up for one another through illness, grief, emotional upheaval, and ordinary hardship. We’re not just related; we feel like a clan. My cousins and I constantly show our love for one another.
Our love is greater than our differences
I’m sure we don’t all share the same political and religious views. What those differences are, I don’t really know. We don’t discuss them. Not because they don’t matter, but because they matter less than we do to one another. No outsider, politician, minister, or priest will ever convince us that any member of our family is disposable.
Living with MG has taught me something essential that feels increasingly forgotten: When survival is on the line, ideology fades. You don’t ask who runs the MRI machine. You don’t ask your neurologist how they voted. No patient is denied care because they come from a red state or a blue one. When illness enters the room, political abstractions quietly exit. What remains is vulnerability and the need for one another.
MG has also taught me the value of good days. Days feel like gifts when my energy holds, my speech is clear, and eating is effortless. I don’t want those days polluted by bitterness or contempt. I don’t want to keep people out. I want to invite them in.
Robert Frost wrote, “Before I built a wall I’d ask to know/ What I was walling in or walling out.” Living with chronic illness has made that question unavoidable. Scripture echoes the same wisdom in quieter tones: “Two are better than one, … If either of them falls down, one can help the other up” (Ecclesiastes 4:9-10).
I’m not yet sure what concrete actions those of us living with MG can take to heal a fractured culture. But I’m not done thinking about it, and I won’t stop trying to find them. For now, I’ll suggest something simple and demanding: Let’s behave more like my cousins. Less sorting. More showing up. Less certainty. More loyalty.
A quote often attributed to Mother Teresa goes: “I can do things you cannot, you can do things I cannot; together we can do great things.” Living with MG has taught me the deep truth of those words. This disease cannot be handled alone. And neither, I suspect, can our species.
That is why I’ve titled this column “Together.” Just as those of us with MG cannot go it alone, neither can humanity. We need one another. We must learn, again, to be one another’s cousins.
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.
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