I Miss Him While He’s Here

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by Annie Dixon |

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Almost a century has passed since the Carter Family recorded their classic country song, “Will You Miss Me When I’m Gone?” Like any good Appalachian ballad, it is an ominous and mournful melody of life and death, love and loneliness. These concepts are presented as simply and distinctly as the tune, as if they were complete opposites with no overlap.

Not quite that long ago, my husband introduced himself to me by declaring, “You’re gonna miss me.” He caught my attention with that non sequitur of an opening line and held it for the next two and a half happy and healthy decades. Then, he was diagnosed with aHUS, and now I find there are times I miss him while he’s here.

More non sequiturs from my nonconformist

Self-assured and self-employed, Ronald was gregarious, fearless, ambitious, and all around excessive. He swept me off my feet, rescued me from a career in a cubicle, and drove us down the interstates to new vistas and great adventures. Along the way, he joked with cashiers and bartenders, offered as much advice to pastors and police as he took, and laughed at everyone, especially himself. This guy was unstoppable and unflappable; our future looked fast, big, and loud.

Then, five years ago, life slowed down and got rather small and quiet.

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The main symptom of his rare disease is fatigue, which at the onset was severe. He slept a lot. And he would fall asleep suddenly, even in mid-sentence, his or mine. Poof! And he was gone for the next hour or two. When he awakened, the big attitude was the same as ever, even though his energy was still diminished.

I was a bit frightened at first, as I had never seen anyone consumed by exhaustion like that. It was as if he threw a switch: On/off. Talk/snooze. Make plans/pass out. Then I realized it was probably the result of pushing his limits, as he always has done; he just had no reserves to draw on now.

I learned to wait it out in the same room with a book or a bit of work to catch up on. He would wake up where he left off and sheepishly ask if he had fallen asleep. Yes, and welcome back. I missed you.

Here and now and next

Over time, my husband has regained much of his strength, but stamina remains elusive. So, we have learned to pace ourselves. Work is part time, and social life is spontaneous. We don’t want to commit to more than we can deliver, since we never know what his energy level will be.

Our previous pattern of dreams, plans, and action has been supplanted by a new routine of sleeping, waking, and coping. Instead of the waiter taking our order on date night, I am taking my husband’s blood pressure every night, whether he is awake to notice or not.

He still checks out at odd times, drifting off into a deep and dreamless slumber in a dining chair or on the sofa. When he comes around, he asks how long he has been gone, which is rarely more than 20 minutes now. But I still miss him the whole time.

With this chronic illness, we live in a strange limbo between life and death, treatment and management. It is not necessarily a progressive or terminal prognosis, at least no more so than life itself, which is ultimately and tragically fatal for everyone — just ask any Appalachian songwriter. But it seems to me that life and death, and love and loneliness exist not so much on a linear continuum, but rather in complex and shifting layers of experience and interpretation.

Sometimes I think I should write a bad country song about how I miss him while he’s still here. Problem is, nothing rhymes with “non sequitur” or “aHUS.”

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Note: aHUS 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 aHUS News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to aHUS.

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