Chapter 4 - Final Diagnosis
Coincidence Speaks
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Happy Friday, and welcome to Chapter 4 of Coincidence Speaks! Please head this way to start at the beginning.
It’s been a terribly rough go for Paul so far, without much room for anything but moment to moment survival. Earlier this week I posted a story of extraordinary coincidence from my own life, that will give some (much less painful) context around some of the themes of the book as it moves forward.
Chapter 4 begins with a question, and leads to a much different answer than Paul could have ever imagined.
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Chapter 4
Final Diagnosis
“How the hell did I end up here?”
The question hung there like an insect caught in a spiderweb, suspended in the fog of his brain. Alone with Clara in the furthest corner of the emergency room, Paul didn’t have an answer.
The stark sterility of the hospital scene surrounding them didn’t seem believable. It was a hallucination, an abstraction—a surrogate reality had completely replaced his “real” life. The surrogate feeling amplified even more, the entire experience became startlingly dreamlike, and a strange yet somehow familiar sense of suspended time suddenly landed all around.
Back there in the very furthest corner of that emergency room, of all places, as vulnerable as he had ever been, Paul felt that uncanny sensation of flight, of freedom, once more. This time though, he certainly wasn’t suspended in the air in the midst of a time-transcending jump shot.
This time it was like his capacity for perception, his very awareness itself, had somehow expanded beyond its normal borders. As if he had suddenly become a larger witness of his own life, and was now watching the whole thing unfold like a giant holographic movie reel.
A spontaneous, unexpected shift in perspective from being the lead actor of a movie, to watching from the audience.
And as the audience, sure—he was still invested in the show, and wanted things to turn out well—but he was nowhere near as invested as the lead actor. He could see now how the lead actor had become so good at his role, and had played his part so flawlessly, so convincingly, that he’d blurred the line between what was imaginary and what was real. The lead actor had forgotten he was in a movie. The lead actor had forgotten there even was a movie.
Paul looked around the emergency room again and took in the full scene unfolding around all him, really took it in, drank it all in with all of his newly porous senses. No longer captivated by the high emotional drama of his precarious situation, he began to really see the world around him for the first time since his ankle had collapsed.
Even in the midst of the throbbing pain and visceral uncertainty of the moment, all of the pulses and beeps, the morphing shapes and colors, the light and sound dancing together with his own inner sensations—it was all was captivating in a brand new way. All the more fascinating, was that from this new expanded perspective, Paul realized he could now hear his own internal thoughts, like a narrator giving a real-time monologue, clear as day:
“What an odd place to be! Of all the things that ever happened in my life, everything I’ve ever been or done – it’s all led up to this, of all things! Here I am tucked away in the corner of this emergency room, butt hanging out of this wafty hospital gown, crippled in unbearable pain with a lobster foot and some kind of mystery pain condition. How about that, eh?”
He actually burst out laughing despite himself right there in the emergency room, like his own sitcom laugh track, feeling the most surprising new sense of curiosity about the whole thing now—of levity.
“Can’t get much worse, can it? What else is there to lose at this point? Whatever the hell is going on, let’s at least make this movie one worth remembering!”
Clara was not nearly as amused as he was about any of it, and was now beginning to become concerned for her husband’s mental stability. In any case, they were sent away with new prescriptions to fill, new medical specialist referrals—and a complete lack of any viable solution.
Back home once more, Paul contemplated the extraordinary expansive sensory experience from the hospital, wondering whether the whole thing was just some kind of trauma-induced hallucination. The more he thought about it, the more something scraped at the edge of his mind, at his memory… there was something else… what was it…
All at once, the surreal adventure floating on the ceiling of the operating room came flooding back in vivid detail, along with the gruesome soul-sucking apparitions and the breathless sense of pure terror preceding it.
But out of body experiences weren’t supposed to happen to normal people like him. In fact they weren’t supposed to happen at all, as far as he was concerned. Even so, he couldn’t help but wonder if the extreme fear and grotesque images had some kind of connection with the extreme pain and freakish symptoms he’d been dealing with ever since.
Eventually, Paul chalked up both unusual experiences as the understandable symptoms of a traumatized nervous system already on stress overload. But somehow, most fortunately, that inexplicable sense of curious optimism from the ER stuck with him.
That new optimism inspired Paul to put the entire constellation of strange symptoms together in one Last Shot of an internet search. All of them—the mysterious burning pain spreading to different parts of his body, the neurological symptoms, the electrical shocks, the extreme hypersensitivity and sweating, muscle spasms, migraines—the full works.
To be sure, Paul had already been seeking answers in frantic desperation since the day after surgery, poring through endless medical articles, scientific studies, and virtually every internet message board known to man. But just like the medical professionals he had just visited, he had been unable to uncover or even come close to any kind of specific diagnosis.
On this new day though, the search result at the very top of the page was a rare neurological condition called Reflex Sympathetic Dystrophy.
The blue link beckoned like a magnet. He clicked on it, and heard himself gasp aloud—at the very top of the page was a picture that could have been a mirror image of his own two legs.
A sea of emotion rolled through in a single massive wave—a tsunamic swell of intense relief, followed by a cresting sense of hopeful excitement. He knew it—this was it, he’d found the correct diagnosis, and the mystery had finally been solved.
“From here on out,” Paul thought, “all I have to do is connect with the right medical specialists who work with this disease. They will know exactly what’s going on. They will know exactly how to cure this.”
But the more he read into the description of the disease, the more his heart sank. Symbols became letters that became words and sentences imbued with meaning, building into an oceanic crescendo that crashed down, destroying his entire world.
“Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy (RSD), (and also sometimes referred to as the “Suicide Disease,” due to the intensity of the discomfort experienced, and the lack of a cure or effective treatments) is a disorder of a portion of the body, usually starting in a limb, which manifests as extreme pain, swelling, limited range of motion, and changes to the skin and bones. One version of the McGill Pain Index, a scale for rating pain, ranks CRPS highest, above childbirth, amputation, and cancer. It may initially affect one limb and then spread throughout the body; 35% of affected people report symptoms throughout their whole bodies.”
Paul just sat there, numb. He knew in the marrow of his bones that he had found the correct diagnosis. Reflex Sympathetic Dystrophy checked every box of everything he’d been dealing with, even the burning pain spreading from his ankle to his shoulder.
In a strange way he finally felt justified—that the extreme agony and all the crazy compounding symptoms were real. That all of it wasn’t in his head. That he wasn’t overreacting, or crazy.
There just wasn’t a cure.
And the prognosis—well, the prognosis was more horrifying than anything he could possibly imagine.
Paul and Clara traveled north to see a well-credentialed RSD specialist at a top university hospital, where the diagnosis was confirmed.
But just like all of the well-meaning physicians in the emergency room, there was no discussion nor even a hint of a possible cure, nor a full understanding of the disease mechanism. Instead, the RSD specialist’s approach was geared toward managing the pain over the near term, with the nebulous goal of hopefully “achieving a remission” one day.
“We need to schedule a spinal nerve block procedure as soon as humanly possible,” the RSD specialist was saying. “It’ll numb those burning nerve synapses and get your extreme pain levels under control.”
Paul’s mouth opened to ask what a spinal nerve block might specifically entail, but the doctor continued before anything came out.
“And don’t worry, after we do that,” he assured Paul, “you’ll continue to have access to the full range of all the best and most cutting edge medications to manage your pain.”
“Or at least all the ones my health insurance can cover,” Paul thought to himself. Navigating the insurance claims landscape thus far had not been a pleasant experience, to say the least. And the “we’ll help you manage your pain with the latest and best drugs” tagline was getting much too familiar.
But the RSD specialist had one final weapon in his arsenal, his dark brown eyes lighting up at the chance to offer it:
“And, when certain pharmaceutical combinations no longer work for you, or when you develop a tolerance and the side effects outweigh the benefits—don’t worry—we have plenty of other great options for you. After we do the nerve block and try out a few additional drug combinations to check the right insurance boxes, we would be eligible to consider a trial run with a spinal cord stimulator,” he declared.
Paul was both weary and wary of the Unlimited Drug Speech at this point, but at the very least, this spinal cord stimulator was something new.
“What’s that?” he asked, not quite sure if he wanted to know.
The RSD specialist responded brightly: “It’s a small device implanted under the skin of the buttocks near the bottom of the spinal cord, which emits a low pulse electrical current that can help reduce pain levels by up to 50%. We would do a trial run, and then implant one on a more permanent basis if it takes.”
A subtle sickening feeling knotted up his gut as the RSD specialist spoke. It had started with the first mention of the spinal nerve block. He wanted to ignore it—this rising pang of nausea—but he couldn’t help but notice the new questions that were rising along with it:
“This just doesn’t feel right. Should I have another invasive injection anywhere near my spinal cord, especially after the extreme reaction to the original surgery?”
He didn’t want a short term “remission” where the unspeakable pain and all the terrible symptoms he was experiencing could come back at any moment—he wanted to fully recover. He wanted his life back.
“A ‘spinal cord stimulator?’ Is artificial electricity in my butt for the rest of my life really a long term solution?”
Paul politely kept those postulations to himself. Instead he asked, “What about the other treatments I’ve read about that are supposed to be good for RSD—physical therapy, counseling, occupational therapy?” He felt Clara nodding along with him.
But the physician was adamant. “We need to do the spinal nerve block first to get the pain levels under control, then we can look at those other treatment options.”
Paul really wasn’t sure about the nerve block, and still couldn’t shake that gnawing sense of nausea about it—but agreed to have the procedure scheduled the next week at the physician’s firm insistence.
“I’m really not thrilled about the prospects of a newly invasive nerve block,” Clara said quietly on the car ride home. “Something more is going on.”
But what else could they possibly do in the meantime? There was not a second to lose—the RSD specialist made it abundantly clear:
“Don’t wait—the longer you postpone my recommended treatment to get your pain under control, the worse your long-term prognosis will be.”
Paul Endrum was utterly lost.
End Chapter 4
Chapter 5 will post next Friday, February 23rd. Thank you for being here in live interactive real time! Comments and feedback are always welcome.
In gratitude,
E.T. Allen
Aha. I’m finally making my way back in time through your chapters, the building blocks to your hard-earned revelations to come… and I’m seeing all the parallels. Especially appreciating the confusing “trauma response”/“out of body” experience where you’re suddenly able to experience the pain from a completely different perspective. “The lead actor had forgotten he was in a movie. The lead actor had forgotten there even was a movie.” I wonder if this really was a response our brains had to extreme suffering, a splitting off if you will, but then in some beautiful way, also became our salvation?
This is my favourite chapter so far. You’ve got me question8mg the reliability of the narrator really nicely. I really felt a sort of spiralling descent into madness throughout the first half of this.