Accepting aging is a life long process that becomes more urgent with each passing year. More than a decade ago, I entered the conversation about aging through the caregiving door. As I walked beside my mother in the last years of her life, the experience invited me to the table of my own reckoning. I’d read and studied Kubler-Ross in seminary and knew her “Five Stages of Dying”. I watched them play out in real life as a hospital chaplain. My understanding of the dying process rested comfortably in the frontal-cortex of my naïve brain. Over the years, I applied this understanding to every sort of dying, from the death of a relationship to the death of job.
I don’t need to tell you that an intellectual understanding of dying is very different from reality. Coming to terms with my own mortality was decades and layers of awareness away from completion. I suspect it will never be complete until I go through the process at the end of my own life.
My mother taught me much about the aging and dying process, emotionally and practically. As I watched her suffer through the loss of functioning, painful loneliness and diminished agency, without the tools to manage any of it, I woke up to my own inadequacies. I saw myself on a similar path and it terrified me. Then and there I decided I would do my best to find a different way, to be more prepared when my own time came.
ACCEPTING AGING BY EMBRACING MORTALITY
When Mom finally let go and we laid her to rest, my journey into accepting aging began in earnest. I tossed a challenge into the universe: “I’m going to face my fear of being alone, and I will conquer it.” I didn’t have a clue how I would go about it, or any understanding of what it would take to reach this goal. But, lesson by lesson came to me as the Universe quite clearly knew there was much work to be done!
WRITING & CONVERSING THROUGH OUR CHALLENGES
I’ve written about many of the challenges faced in my fifties and sixties, eking out a lesson or two as I did. A few short months away from turning seventy, I am facing the biggest emotional and practical challenge of my life as I am faced with my husband’s illness.
I haven’t been able to write about it thus far except in bits and pieces, even as I know the value of writing as a processing tool. But, I must, for our stories must be told. They are not only invaluable to the shaping of our own lives, but to all who hear them. Our stories are our legacy, not the money, property or awards we leave behind.
THROUGH THE CAREGIVING DOOR
The man I’ve known since I was thirteen and with whom I’ve shared the last thirty-nine years was diagnosed with Inclusion Body Myositis (IBM). An extremely rare myopathy, it is a degenerative disease of the muscles with no known cause or cure. Similar to the more familiar Lou Gehrig’s disease, IBM is estimated to strike a mere 10-112 people per 1,000,000. Progression is unpredictable, but sure and steady.
His diagnosis was more than a year ago, almost two now, but as is common it likely began seven or eight years before. Our life is steadily changing, our struggle to hang on to hope tenuous at best. The political chaos and the impact of Covid took the rest of the air out of our world and the life we was living. Any sense of “normalcy” fell to the very bottom of the pile of things to do and emotions to try to deal with.
GETTING BACK ONTO MY PATH
When I began writing, I didn’t worry about offering anyone solutions. As time went on, I changed lanes and thought it was my responsibility to offer solutions when I found them. It was never a comfortable lane for me. Is it not the questions we ask that are of most importance? We must each find our own answers. My answers are not yours, nor yours mine. But the conversation is where the true value lies. Sharing and discussing and supporting one another stirs the pot for everyone involved.
This is my faltering attempt to pick up the pieces of my old life and begin to weave them into the parts of my life I never saw coming. After all, isn’t that what we do? I need to write. It’s how I process my life. Of equal importance, I hope you’ll share your thoughts and experiences here with me and all who join the conversation. We are connected by our stories and our connection is a powerful anchor in treacherous seas.
PLEASE TAKE A FEW MINUTES TO LEARN ABOUT IBM (Inclusion Body Myositis)
In addition, there is great urgency among those stricken with IBM, and their loved ones, to increase awareness, support for, and research into this horrendous disease. Each day as I watch my husband, and those in his support group deal with the agony they endure, my heart grows heavy. Worse than having an illness or disease, is the absence of hope. It’s nearly impossible not to sink into despair, when facing the loss of physical functioning and self-reliance, even as their mental capacities remain intact. Rare and incurable diseases, and there are many, are where scientific research belongs, not in tweaking the latest anti-depressant for commercial success. I want to do what I can to push this boulder a little further down the road with the hope that one day science will find an answer, for this, and the other growing number of auto-immune diseases.
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I entered the caregiving door and also exited it too with my mother, my aunt, and then my younger brother. I am sorry to hear your husband’s diagnosis. Yes, I hope too that science will find cures for these awful diseases.