Love, according to the Bible’s First Epistle to the Corinthians 13:7, “always protects, always trusts, always hopes, always perseveres.” As Labor Day approaches in the U.S., it is fitting to honor the one occupation that, within the above context, may aptly be characterized as a labor of love.
Thank God for the caregivers.
Of course, they are heroes. But that’s not the point, is it? They are not there to be heroes. They are there to make heroes. They enable us to experience daily highlights that are admittedly microscopic on the normally functioning human scale, but heady, intrepid stuff in our narrowed world. Most importantly, they are critical catalysts to us being temporarily unshackled from the preoccupation of our own demise. When that occurs, when ALS is temporarily conquered, I feel, momentarily, like a hero.
They see the person, not the disease. They see the hero-in-making, not the infirmed. They dispense hope, not tragedy. They ease the burden of lugging a disabling affliction on one’s back, 24/7; they don’t add to it. My debt to my caregivers is incalculable.
First and foremost is my family. Fighters all — which makes them the perfect adversaries for ALS. They motivate me to constantly battle this disease in big and small ways. They remind me to look for, and appreciate, even the most modest skirmishes won. They are emphatic that I never give up. They are insistent that I never wallow in self-pity. They are vigilantly on the lookout for anything that may improve my condition. They cheerfully step in as needed in the role of untrained caregivers. Above all else, they remain convinced that I will emerge victorious.
Likewise, I have been blessed by the assortment of professional caregivers with whom I’ve had the privilege to interact. Space doesn’t permit a comprehensive listing. A brief sampling of the poignant generosity visited upon me:
- A wellness guru who combined deep tissue, trigger point, and Thai massage three times a week, often free of charge, as he was battling his own debilitating ailment.
- A physical therapist who burned me inspirational CDs and creatively made arrangements for my therapy to continue after Medicare coverage had been exhausted.
- The speech therapist who brought me books on jazz and joined my team at a local fundraiser.
- The nurse who gave me three months’ supply of the Deanna Protocol, a regimen of nutritional supplementation that has been proposed as a treatment for ALS. She also provided me with her phone number in case of distress, and responded three separate times.
Finally, the icing on my care cake:
My current morning aide, who concocted the only effective topical treatment for my chronic pressure sores, spent uncompensated time with me during a nasty respiratory infection, twice fixed my lift chair, and has introduced me to her immediate family members.
All this, and more, despite a communication protocol largely consisting of clumsy charades, gestures, nods, and a tiny intersection of mutually understood words. She is Cuban. My prior command of Spanish involved only words that might find themselves in a sentence containing “cerveza.” Yet, owing to her unflappable demeanor and nurturing nature, we have a trusted routine (comfortably detouring from it, when necessary), unshakable bond, and deep affection.
The intangible gifts that they all bring to bear for my benefit amaze and move me. Every day they rise above abject tedium. The tasks that they perform often don’t yield immediate, or obvious, feedback. Somehow, they muster on. I cannot fathom how they do it.
With grace, they steadfastly fulfill a caregiver role,
That for most others would resemble a black hole.
They cheerfully prop me up, and will never complain,
Shrugging off their own emotional and physical pain.
Performing hideous tasks of the lowest servitude,
Never allowed respite, no matter circumstance or mood.
Their identity subjugated, like a thief in the night,
In the midst of darkness, they assure I’ve got light.
They allow me to feel normal, in the most abnormal state,
Sparing me embarrassment and burden, humanizing my fate.
Their ambitions set aside, subservient to just one,
That my life possess quality, and maybe even fun.
Ensuring my dignity, they avoid an ironic trap,
Never acknowledging that I am now their own handicap.
Paul, the apostle, wrote of love’s holy essence and virtue,
But the caregiver to the stricken is the example most true.
If not for all of your care, in ways both profound and subtle, I would not be here today. You have my thanks and love. You are all treasured gifts from God!
Note: ALS News Today 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 ALS News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to ALS.