‘Ode to Joy’: How a 911 Call Recalibrated Me
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. 1: My oxygen saturation was hovering around 75 percent. “Normal” is above 96 percent. Blood oxygen levels below 80 percent may compromise organ function.
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.”
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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.
fran lancaster
What an ordeal Rick! Thank you, and God, for your words this morning. This is something that I so needed to hear right now. I am touched by you and your words and your experience. You have incredible grace and insight.
Marlene Yvonne White
What a GREAT writer! Rick Jobus, I sincerely hope you do a 2nd submission, or have your own blog. Excellent, inspirational & FULL of Wisdom! Thank you!
Mary
Thank you for sharing your faith with us. This was a great article. Personally, our faith is what brings my husband and I joy and carries us through each day with a smile....even in the midst of suffering and pain.
Ellen
Sending air hugs and love~ You are an inspiration!
Ellen S.
Nina
Thanks so much for this timely column, Rick. I had a very similar episode just last Sunday night and fortunately mine only lasted about five minutes but it was the first time I’ve had any kind of esophageal issue. Totally frightening. So yours must’ve been a prolonged nightmare.
I know exactly what you mean about not fearing death but fearing dying. I don’t know if there’s any way to resolve that fear. I think it’s just something we all have to find our way through.
Cindy
Inspired. Insightful— for any of us who suffers this insidious disease in whatever degree
God bless us all.
Patricia
You are so inspiring Rick. Thanks God you are ok now, I hope that you recuperate all your weight back, you certainly went to the border of the abyss and back! I am glad you were able to get a good mental recalibration.
Robert
Do not doubt your purpose and contribution, you have just validated both. God bless you.
Carolyn Wilhite
I completely agree, Robert.
Gary Gehiere
Thank you, Rick, for sharing such a traumatic, deeply personal experience. You have encouraged us greatly in the things that, in the end, count the most.
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Leslie
Thank you for this post! I've been struggling with the sense of worthlessness and purposlessness since my diagnoses. It's hard when saying thank you doesn't seem to be enough. It's far better to be thankful and joyful than to be one of 'those' patients that nurses, doctors and therapists dread working with.
Dave Reckonin
The Creator: Some people call him God; He created the entire Universe and everything within it. And that 'Everything' includes ALS.
I wonder why he did that ?
Jala Lynn Ward
You Rick have helped me get through many troubling days, thank you for being my inspiration!
Ellyn
Your ability to formulate and write is your purpose and contribution. I hope ALS never robs you of that gift. Thanks for the reminder that sometimes a simple thank you and showing gratitude is all that is needed to bring joy. So glad you are home and in your comfort zone again.
Linda Nolan
What an inspiring article, Rick. I’m so glad you are back home. As always, my thoughts are with you daily.
Tommy H
Hi Rick. I like to say I’m such a good writer that, “I write good.” I’m a literary snob; I prefer a supernal prose that seems to drip perfectly from the fallen quill of an angels wing. if I can have it. I have to say I wasn’t expecting to find such a thing today, but I stumbled upon one piece of yours and then this one and I recognize a master of the written word when I see one. You are most certainly it. And today I found you and your magical voice and I just wanted to say how much I appreciated it. While I’m sorry for your ordeal, I am thankful you chose to share it that way that likely only you could. You managed to be profound, sincere, vulnerable, and intimate all within a few breaths. And you did it all beautifully. I don’t know how often you write or how easy it is to do so but I hope you continue to do so for as long as you can. You have touched several people who have commented before me and you clearly have a gift. Thank you for sharing. There’s a huge purpose in that, one that by virtue of being written, achieves its own immortality. Thanks for using your gift to put a little lift in others. It helped me today and I’m sure it will offer something of vast import to many others who follow. God bless.