When Pain Breeds Uncertainty — How Being A Patient Changed My Life

Before I started fighting uphill battles for a living, I was busy losing a battle for my own health with no clear end in sight.

While Part I of this series outlined my patient experience in broad (and largely thematic) brush strokes, this article instead weaves together select details from painful anecdotes over the course of that eighteen-month patient journey.

If you thought my previous article might have been difficult for me to write (and believe me, it was), this one was the literary equivalent of falling off the horse — every horse, in every race ever raced — by choice.

So, why bother? Well, you might be surprised to learn what writing can do for the unsettled mind. It continues to surprise me at least; so alas, here we are.

The decision to write this follow-up was as much for me personally as it was for all of you who can relate to these sentiments and who have offered your unwavering support in response to reading part one.

But realistically speaking, I am fully aware that the vast majority of you cannot relate and hopefully never will be able to. Though, if someday you can, then this story will be here for you to return to and know that you are not the only one sinking when you wish you were swimming.

In a world where “luck is what happens when preparation meets opportunity”, your continued support remains a key driver in our present opportunity to provide better experiences that shape the future of healthcare.

We begin with a balancing act.

For those unfamiliar, the practice of wound care is both an art and science. It is infinitely complex and deeply personal. Perhaps most importantly, the process of healing is affected by many contributing factors beyond the point of care like diet, lifestyle and mental health.

A letter published in the American Journal of Managed Care by an esteemed nurse practitioner in the field of wound care does a wonderful job of describing these intricacies and the importance of approaching this balance through holistic healing.

Now, to the next building block of our preamble: a quick note of thanks…

To those who cared.

There are few people in this world I respect more than those corpsmen, nurses and sailors who cared for me. At the end of the day I was wholly and completely in their care. I felt it, they understood it, and not one of us ever doubted it for a second.

At the time, I am certain that with each passing treatment the team could see my hopes and dreams dwindle and die in my eyes. It was obvious to me of course, but you never really know when your internal woes suddenly escape into the daylight for the world to see.

Though it remained unspoken, we all knew by month twelve that I had been rendered useless in the eyes of the operating guidelines. A childhood dream and a lifetime of hard work and dedication shrugged off by the wonders of physiology. To be completely fair to physiology’s own historic plight, I had only been at this particular dream for a decade or two — it’s all relative.

As much as I feared and loathed those dressing changes for the physical pain they forced me to endure (about to be described in some detail), I’d argue that the wound care team’s camaraderie and respect for my situation was often what kept me going through the somehow-worse psychological havoc of it all.

To this day my offer stands for every sailor, corpsman and officer who took care of me: should you ever wish to transition from the Navy to the slightly smaller and lesser known IKONA Health, you will always have a team ready to support you.

Let’s begin.

What I’m about to tell you details just one wound care case. It’s the only case I have any merit or right to discuss: my own.

Leave everything behind that you know about me as I am today.

Nothing about what I did or wanted to accomplish leading up to this journey is relevant. It mattered little to my healing process then, and it matters even less now.

This is a story about how I lost hold of reality. Slowly at first, then all at once and forever.

But the worst part of all is that this is happening today, right now — all around us and at all times. Though patients are often invisible to you and I, they feel like they’re in the spotlight. It is a terrifying thing to not be “well” for one reason or another. It’s isolating and uncertain, which happens to be a particularly potent combination.

My story is what I believe to be a relatively lucky case by some standards and a rather terrible one by others. Honestly, I’m sure it just depends who you ask, which in this case happens to be no one for reasons to perhaps to be addressed at a later date.

My first and only trip home.

I still remember the expression on my first surgeon’s face when I told her that I had booked a flight home to spend a few days recovering with my family in Massachusetts after surgery. I gave myself about 48 hours to recover between the operation and the flight, which in my mind was plenty of time for an outpatient procedure.

Apparently, she wasn’t impressed by my courage; she just thought I was smarter than I proved to be.

I wasn’t worried, the flight surgeon has assured me that I’d be back to flying by the following week. How bad could it possibly be?

Even when it turned out to be “more extensive” than she had anticipated once they went in to operate and I had ended up staying the night in the hospital, in my mind I still had an entire day left to heal before my flight home.

True to Murphy’s Law, my three-hour flight home took ten hours that day, with much of it spent “sitting” in the plane on the tarmac. I wasn’t supposed to sit at all (my surgical site went down to my tailbone), so I used my elbows to keep myself off the seat for as many hours as possible.

For the record, it shall be known that I normally share my armrests with my plane neighbors, which made it all the more frustrating to be stealing them for hours on end. And yes, you guessed it: I occupied the middle seat.

By the time I arrived in Providence I was taking several seconds between each excruciating step and clutching the walls for strength on my way to the baggage claim. I rode home curled up in the fetal position in the back seat of my parents’ SUV and didn’t sleep that night because I was somehow seeing my pain. Apparently, my pain sensors could not fully express themselves using a single sense so they instead recruited my vision for help.

Fun fact: I may or may not have seen new colors that I never knew existed until that night at home. Unfortunately (or fortunately?) they would return again to visit me more and more often over the next year, but more on that in a few.

One leading factor in my decision to recover at home for a few days, aside from the fact that I was expected to have fully healed within the week, was that my mom is a nurse and was able to assist with dressing changes as needed.

Let me just say that if I hadn’t yet gathered by then that my surgeon thought I was delusional, my mom certainly made that point clear. She was the first person who could actually tell me what they had done in terms that I could understand. It was…extensive.

The next couple days were a blur. All I fully remember was spending my days much less active than I had hoped and anticipated. And above all, a fear was building inside of me about the realization that I still had to get back on a plane or two and fly back to base.

This trip was my first glimpse at what extended inactivity paired with fear of an inevitable physical pain can do to a person’s psyche, even on a limited scale.

A new routine.

My first month of daily dressing changes went something like this:

Monday through Friday I’d drive myself (while sitting on my left hip, which is still how I sit sometimes out of habit) to the VA hospital around 8 o’clock in the morning and walk to the wound care clinic, which was at the very far end of the ground floor.

The team would take my vitals, remove the dressings, clean the wound, then call in the nurse or doctor to have a look and make a decision about what to do next. Most days, that decision simply amounted to a replacement set of dressings, usually gauze.

On weekends the wound care clinic was closed, so I’d have to head upstairs to the family medicine clinic and see the flight surgeon who was on call, if she or he happened to be available. Otherwise, and more commonly, I would get a couple brand new sailors out of boot camp who were still learning that the medical side of the military did not require so much formality. As you might expect, once we dropped the “sirs” and they were at ease, their training kicked in and I was well taken care of. These dressings didn’t always fare as well as the wound packing done in the clinic, but by week two or three I was able to coach them through how it “usually feels” (since I couldn’t actually see anything directly, ever).

I preferred weekdays.

Wake up. Hospital. Recover. Sleep. Repeat.

Between hospital and sleep was some combination of sleeping, reading, and watching things from the comfort of my solitary couch prison.

If I had only realized then exactly how good I had it.

Then again, the silver lining of it all was that I had no clue another prison was awaiting my mind in the days, weeks, months, and year ahead.

Several months passed.

The relief of not being on the rigorous flight schedule grind had faded and been replaced by boredom and confusion. Not the worst emotional pairing in retrospect — after all, I had felt the same way in macroeconomics. Only this time it was personal.

My friends were now finishing their training and going off to do bigger and bolder things. All I could do was watch as class after class graduated and headed out to the fleet. The joke was over, I was growing restless and concerned.

But the wound care treatments only seemed to grow more random as the weeks progressed. They had started using this rather vicious little topical application called silver nitrate, a debridement tool and cauterizing agent for bleeding. Something wasn’t right.

It was around three months after the first surgery that I recall my wound care team spending more time than usual cleaning, debriding and measuring my open wound than was normal.

My least favorite medical device.

That was the first time I heard the term “wound VAC” used in a sentence. Unfortunately, I was the indirect object who was receiving the action in that very same sentence.

A wound VAC is exactly what it sounds like: a vacuum for wounds. It works by decreasing air pressure on the wound, which can help wounds heal more quickly. They are actually quite fascinating from technological and physiological standpoints if you’re interested in learning more, but that’s not what this story is about sadly.

The team noticed that my healing progress had stalled. Essentially, they didn’t like the way the tissue looked, and the wound’s measurements (length, width, and depth) had not improved in weeks. It was time for an aggressive effort to avoid a second surgery, which I was unaware of as an option, much to my chagrin.

This is the fun part.

Dressing changes proceeded to take a nose dive off the already-too-deep deep end of the proverbial pain pool.

Part of ensuring that the wound maintains proper negative pressure for the wound VAC to do its job is maintaining a proper seal over the wound. As many adhesives as it takes. They are incredibly, well…adhesive.

In my case the team also decided to use a mesh layer in the wound bed that conforms to the shape and is supposed to help protect the wound from coming into direct contact with other dressings or ointments. The mesh is non-adherent, but that wasn’t the problem.

The problem, as I re-learned each week, was that the wound would heal into and through the mesh, so by the time I would arrive for my then-weekly dressing changes, removing the mesh meant tearing it out of the freshly healing wound. There’s a reason one of the top associated risks is severe bleeding.

The pain I experienced while they removed the dressings is indescribable.

After removing the dressings the team would spend 5 to 10 minutes packing and re-packing me with gauze until the bleeding slowed down.

At this point they would all leave the exam room and give me a few minutes to lie there on the table and gather myself.

Then, when they were ready (I never was), they all came back in to re-apply the wound VAC once again with fresh dressings and adhesives.

Yes, the pain was mind-numbing. Did it really matter? No, it only mattered that I knew it was coming — the realization of that dread was the most demoralizing factor.

A quick breather and comment before I press forward.

It didn’t matter how fast or slow the dressing removal and placement happened. It was all excruciating, and the wound care team knew it.

Those moments were horrifying for me, but it was far worse for them.

I could feel it in the way they were breathing and in how they handled themselves around me afterwards. Consummate professionals who never want to have to do that again — until next week.

This happens every single day for nurses and healthcare professionals all over the world. Here I am telling one snippet of a story about pain and suffering, but the reality is that not only are there people who have it worse than I did, these healthcare professionals have to deal with this torment constantly. It’s an unwritten part of their job description.

That amount of courage cannot be overlooked or forgotten.

Back to the void. Pain takes a new form ahead.

Once again, there was a moment in the middle of a dressing change where everything came to a standstill. They stopped working and just stood there.

When I asked them what was happening — again, I was always face-down staring at the corner of the room and listening to everything happening around and behind me in the room — they only said, “we’re waiting on your surgeon.”

I hadn’t seen her since the day of surgery months before, so I knew something was up.

You can imagine my surprise when a different surgeon walked into the room and greeted me. He explained that he would be doing my next operation.

“Sorry, it sounded like you said ‘next operation?”

He then proceeded to let me know that they had not done an extensive enough removal of the affected tissue the first time around and that they would have to remove quite a bit more the second time.

“Cool. Got it. Understood.’

‘Oh, wait, you’re clearly not done talking so I will just cut you off and keep filibustering so you can’t continue to what I fear might come next?…’

‘…’

‘…OK, go ahead.”

He added, “And we’ll have to start you on the wound VAC from the very beginning this time around and see if that works any better.”

There it is.

Losing control.

They scheduled my second surgery almost six months to the day after my first one.

Most sailors would have been discharged back to their quarters on the naval base but officers are given a bit more freedom to live off base. And since I didn’t have anyone at home to help care for me, my care team decided keeping me overnight in the hospital was for the best.

Then I went home again and returned to the maddening abyss of time.

Time as an orderly sequence of events ceased to cooperate.

Direction itself, let alone forward, was no longer detectable.

The days between dressing changes grew longer to ensure the wound VAC had enough time to do what it was supposed to do.

At this point I still had enough shame to be embarrassed about being seen in public with it, especially with all of the ensuing questions and comments that came along with wearing it.

By the time this was all over (and to this day), I had largely been stripped of these emotions.

Sleep no more.

I kept the room-darkening blinds closed because my sleep pattern was now completely off, and would spend days on my couch until my phone reminded me that I had an appointment.

I could not sleep on my back nor my front because of the wound VAC. The position had to be perfect to maintain the suction and prevent air from entering and escaping the dressings.

Even at its quietest, the sound grew to be so loud that it was impossible to sleep; and when I finally did, the pungent smell of the dressings would wake me back up.

Odor and touch are two of those things we seldom think about when we’re reading or watching depictions of medicine, yet the two senses missing are easily among the most powerful for those involved. Ask any nurse, doctor, or conscious patient.

There was no respite for my mind or body — only more pain than I thought could handle.

Several more months passed.

During one particularly painful dressing change, I left so shaken up that I decided to go to the Emergency Room on my way to my car just to sit down because there was no way that I could make the walk to the parking lot, let alone drive my vehicle the five minutes home. So, I asked the nurses to page the wound care team to come get me and to haul me away.

And they did. All of them, without hesitation.

A day or two after a dressing change where no progress had been made — I had once again managed to hit a plateau and stumped the wound care team — I decided to take matters into my own hands.

Literally.

I ripped out the wound VAC in the shower and drove myself to the hospital to tell the team that I was done with it forever, and it was time to go back to the daily dressing changes.

Whatever Aristotle originally intended “catharsis” to mean, and I’m fairly certain it was not this wound VAC shower scenario, that’s what it felt like: pulling the physical and mental pain out of my system. It was my way of finally taking control for once in this journey.

Quite honestly, it did not matter and I did not care what came next, so long as I could take off the vacuum once and for all.

Living with that device was no longer a possibility for me.

I had spent too many mornings after those dressing changes with my head buried in my steering wheel, not yet composed and ready to drive home.

At a certain point, my damaged mind needed more attention and took precedence over the physical self — recognizing this and acting on it was perhaps my single most important act over these grueling months.

It’s mostly up from here.

Let’s fast-forward once again to the one-year mark after my first surgery, when two important things happened at the same time:

1. It was now clear that I could not return to flying an aircraft due to Navy regulations. But I also couldn’t really go anywhere or do anything until I healed anyways, also per Navy regulations. Unofficially, I was stuck in limbo waiting to heal so I could figure out my life, for better or worse.
2. A third surgery was scheduled for a couple days before my twenty-fifth birthday in July of 2014. The Navy referred me to an Air Force surgeon at a base in another part of Florida who had a promising solution that just might help me heal. Once again it was a little more involved than the previous operation, this time because it involved what’s called a flap procedure.

Why these things are important.

We humans need but one thing to persist in the face of unspeakable realities: hope.

As someone who had spent his entire life thinking what set him apart was his seemingly infinite willpower — but who had learned that willpower depletion is a self-fulfilling prophecy — hope was all I had left.

When this sliver of hope materialized in my mind, a switch flipped. Now, thinking back, this was most likely only because of the finality of the Navy dream being over, because in reality nothing about my situation had actually improved.

Even still, this fleeting moment was the spark I needed that led me to spend the final third of my patient journey on an insatiable learning quest. I ended up reading 637 books during the course of my patient journey and to this day reading brings out that feeling in me.

A part of me began to awaken that I hadn’t felt in nearly a year, the part that had spent its entire existence orchestrating the rest of my body to act a certain way in an effort to get to where I was before all of this started.

That unstoppable force needed to be channeled somewhere new or else it would ruin me, so I allowed my curiosity to take full control and put it to use learning new things.

This surgery was different.

The third surgeon was confident that his method would work from my very first consultation with him. He had seen this before countless times and wished that he had been able to help me sooner.

Wait, but I only lived ninety minutes away, rotting in a mental prison for over a year.

What did he mean that this was common and that he could have helped me sooner?

Dissension began to forge a relentless storm at my core that persists to this day.

Fix me, now. I’m taking control of my life back.

Not so fast — hold that thought.

Fisher House Foundation.

Luckily for me, I had a nurse in the family who was willing to spend a month helping me get it right this time around, so my mom flew down to Florida to take care of me for those critical first several weeks after surgery. She made a world of difference.

There’s one organization I’d be remiss not to mention that provided my mom and I with a place to stay for the first week after surgery until I was able to handle the ninety minute ride home while lying in the backseat: Fisher House Foundation.

I spent my birthday with my mom and a handful of other wounded veterans (and their moms) who had had major surgeries at the hospital that week as well. Age, rank, military occupation, none of that mattered. We were just a group of people brought together by sh*t luck and surrounded by people who wanted nothing more than to help in any way they could — and help they did.

If you ever need a great cause to contribute towards or if you’re looking for volunteering opportunities, please remember my story.

Time to recover — if only I could recover time.

All I will say about the events that took place between July and October of 2014 is that I was slowly re-acclimated into having day to day responsibilities at work, which helped keep my mind off of eternity and re-introduced a semblance of structure that I had been missing dearly.

Slowly returning to the gym, the pool, the track, and to civilization were also highlights of this period.

It was business as usual at the hospital with daily dressing changes, much as I described in the first section of this article.

Then something unpredictable happened.

That day in October.

If you’ve already read the first part of my series, then you might know that this is the really, truly fortunate part of my patient journey.

I had healed.

I’ll never forget the sound of the corpsman’s slow exhale and long sigh before telling me the good news. We had both been through the ringer by this point.

The entire department exchanged hugs, handshakes and tearful nods, wishing never to see me again (in the best way possible).

I had been with many of these corpsmen for their entire tours of duty in Pensacola, and even outlasted others.

Overwhelmed with emotion, without fanfare, and afforded little in the way of closure, I left the hospital in Florida for the last time on October 8, 2014.

One of the greatest honors of my life so far was in having many of those sailors who took care of me for those many months invite me to their re-enlistment ceremonies and farewell gatherings.

The words they each shared with me after the fact about their firsthand impressions of what I was going through will stick with me forever and keep me grounded when times do inevitably get rough.

Where we go from here.

Forward. Onward. Upward. Any which way-ward.

I’d rather have had surgery every single day for eighteen months than have gone through that wound care experience, but that wasn’t an option. However, I have learned one invaluable lesson about the things that are in my control in the here and now.

I swore an oath to myself on one of my darkest days, while I was stuck in my proverbial couch prison. I told myself that if I ever got back on my feet, that I would never stop moving, ever. That my life would become a marathon of sprints to make up for lost time.

The irony in how I operate and choose to live my life nowadays is not lost on me. It is no longer about sprinting every day for as far and long as I possibly can: it’s about cultivating meaning and achieving balance through deliberate practice.

The storm rages on.

—

Tim Fitzpatrick

CEO & Co-Founder at IKONA Health

Brooklyn, NY | 6th Anniversary of First Surgery | June, 2019