Guest Voice: Looking for the person I’m becoming with hypoparathyroidism
Recognizing the signs of hope and new beginnings in life with a rare disease
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Over the last 25 years, I’ve spent the majority of my days literally looking up at the sky or the ceiling. My perspective is different from most healthy people since I’ve been lying down somewhere, either on a couch, bed, zero-gravity chair, or one of my beloved hammocks, for decades.
This is due to a rare post-surgical endocrine disorder that causes debilitating fatigue along with a multitude of bizarre symptoms. It is called hypoparathyroidism.
In the back corner of my yard, next to my lush banana tree garden, sits my favorite resting spot, my hammock. On the other side of the white vinyl fence stands an old, glorious white pine tree. I consider this tree my friend. It has provided me with so much entertainment and wonder over the years. I have lain there and quietly watched the nesting mourning doves who return year after year as winter’s cold dissipates.
I have watched thousands of little pine cones develop in the springtime and drop down into my yard. I have sneezed through the thick clouds of yellow pollen as it swooshes out of the pine needles when a gust of wind blows by. This mighty white pine is a hub of activity. I get amused watching the squirrels as they fight and chase one another around the trunk. I get less amused when the grackles and starlings fight over the territory of certain branches. The beautiful songbirds seem to arrive and serenade me as I close my eyes and rock back and forth.
Discovering the bird app “Merlin” has helped me identify bird sounds in my backyard and among the neighboring trees. This app helps to pass the time in between naps. I enjoy seeing what birds have chosen to surround me as I lie without energy or motivation to do much of anything.
The mourning doves have become my favorite visitors. There is something special about their cooing, their gentle presence, and their smooth appearance that really resonates with me. Their song is very different from all the other birds, just as I feel like my song is very different from everyone else’s. It is as if they come to comfort me in my sadness. Year after year, I’ve watched them tend to their nests and raise their young. Perhaps I am a comfort to them, too.
Two doves finally found one another after a summer of mourning. (Courtesy of Jennifer Stewart)
Early one spring morning, I noticed the male dove on top of the shed calling and calling and calling, with no reply. Watching him day after day cut me to the core. I knew he had lost his mate. I wondered what had happened to her. As I sat and watched him searching back and forth across the roof, it made me think about how I have also been searching for my mate, the person I used to be. I felt like, together that summer, we were both mourning the lives we had lost.
My eyes would fill with tears every time I heard him calling. This went on all summer until winter eventually came. For years, I thought the doves were called “morning doves” because I would hear them in the morning. But after discovering their real name is “mourning dove,” my connection with them grew even deeper.
The following spring, the dove returned. I could hear him calling, calling, and calling. “Coo-AHHH-coo-coo-coo.” Then one day, in the far distance, I heard a return call: “Coo-AHHH-coo-coo-coo.”
It wasn’t long after that another dove appeared. They danced around one another on the roof of the shed — finally, another chance for happiness and contentment. Since doves have the same mate for life, this was a sign of hope and new beginnings.
In 2019, the parathyroid hormone injection I was on was recalled shortly after I got adjusted to it. This was the closest I had come to finding the old me. Then, I lost her once again. For decades, I have struggled with a rare disease diagnosis with no other option than a subpar standard of care. I have survived multiple ER visits with an occasional stay in the ICU.
Finally, in recent years, new treatment options have become available. I am on Yorvipath (palopegteriparatide) now, a new parathyroid replacement therapy. After two years, I, too, am experiencing signs of hope and new beginnings. Hopefully, I can get another chance at happiness and contentment.
Instead of searching for the person I’ve lost, I need to start looking for the person I’m becoming. Maybe someday I’ll start to hear her calling back. I know she is out there somewhere.
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Note: Hypoparathyroidism News is a strictly 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 another 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 Hypoparathyroidism News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hypoparathyroidism.
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