I recently reemerged from a plummet into the dark depths of my psyche. An eight-day hospital stay triggered my dive into an emotional abyss.
About 2 1/2 weeks ago, a piece of chicken stubbornly lodged itself in my esophagus. After waiting 24 painful hours, in the hope of uneventful digestive passage, I agreed with my afternoon aide’s assessment that a trip to the emergency room was warranted. My ambulance commute, strapped to a stretcher like Hannibal Lecter (sans mask), sent my attitude heading in the wrong direction. Once in the emergency room, the red flags began flying fast and furious.
Red flag No. 2: Lung intubation was discussed. If deemed necessary, and agreed upon by me, it likely would be permanent. If that happened I would require constant skilled care — a cost far beyond the reach of Medicare coverage, and liable to quickly liquidate my meager assets.
Red flag No. 3: I had aspiration pneumonia. Pneumonia is one of the leading causes of death among those with ALS.
Red flag No. 4: I was admitted to the intensive care unit. What began as a somewhat mundane quest to free a stray piece of food had morphed into something far more serious and potentially life-altering or ending.
The first night in ICU frightened me beyond my comprehension. What was I scared of? I thought that I had come to a peaceful acceptance of my prognosis long before. And why was I scared at all? As a Christian believer, my trust in God should be unshakable. I then added shame to the fright, for an even more potent anxiety cocktail. After pondering those two questions until dawn, I arrived at the following, perhaps hairsplitting, rationalization. I don’t fear death. I fear dying.
The next day, during a visit from someone very close to me, the conversation became existentially philosophical. We bantered about purpose and contribution. We agreed that without either of these, life has no point. In my diminished state, I became apprehensive about both components, post-hospitalization.
The balance of my stay was highlighted by wonderful interactions with a plethora of hospital staff, receiving sustenance via a nasogastric feeding tube — dropping 10 pounds in the process — and, most impactful, receiving countless reminders of the risks associated with my returning home to my normal routine. Now I added fear of living to my fear of dying, as well as questions about the tenacity of my faith, and concerns about a purpose and contribution void. That was me at discharge.
It took two days to overcome my newfound trepidation with daily life. I figured that I was essentially the same, health-wise, as I was before, and that what landed me in the ER was an isolated incident. I realized that the risks had not increased, were well understood, and had been mitigated as much as possible. With that awareness, my waning spirit buoyed.
The next day, the queasiness over my faith was appropriately addressed by my pastor. He simply read the following biblical passage: “Lord, I believe; help my unbelief!” His counsel was that even the most devout are vulnerable to circumstances that threaten to overpower their faith. I mentally bookmarked that an appropriate response to a crisis of faith is to acknowledge that in those moments when we don’t seem to have sufficient faith to follow God, we should ask for more.
But I continued to fret about my purpose and resulting contribution to others. I reasoned that I could best serve my pursuit and associated value with a mission independent of any anticipated health decline. I then recalled a quote by Ed Dobson from his book “Seeing Through the Fog: Hope When Your World Falls Apart.” It reads: “It is one broken person talking to another broken person. And there is power in that.”
By any theorized construct, and viewed through any lens, the consensus is that we live in a broken world. The most privileged and insulated among us are not immune to suffering, loss, pain, and anguish. Everyone craves, at one time or another, relief and recognition. I then remembered the reaction of every hospital employee whom I had encountered as I smiled and struggled to vocalize the words “Thank you.” It was momentary joy.
Moving forward, I will consciously strive to impart an element of joy to every interpersonal interaction. The beauty of that purpose is its endurance. And the associated contribution, however paltry, is readily felt.
One of my mom’s favorite compositions was Beethoven’s “Ode to Joy.” Two excerpted lines speak volumes: “Joy, bright spark of divinity” and “All creatures drink of joy.”
Adding to that bounty will become my mantra. To again quote Dobson, “You are indispensable until your work on earth is done.”
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.
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