A trip to Hell

“Change is hard, but it happens, often without stopping to ask for your permission.”

“Open your eyes Mark! Mark open your eyes...”

I did. It was bright. Then my field of vision was suddenly filled with faces of people wearing masks, looking down at me. “I’m in a hospital”, I thought.

“You’re in a hospital”, one of the masked people helpfully explained “I’m Doctor Salarnio. You have a breathing tube; we are going to unhook it and extubate you.” Dr. Salarnio leaned in so close, his was the only face I could see. “It’s not going to be pleasant”, he said. And it wasn’t. 

Monday

Monday, February 11, 2019 was the start of another impossibly busy week for me.  As the CEO of a growth-stage technology company, they were all busy now. I was on my way to Manhattan to speak at the annual Baird conference, but not before visiting some of our customers to shine a light on what PathFactory was going to do for them this year.

For a little over five years PathFactory had been helping marketers with a new kind of capability. The big idea was Content Intelligence: enable B2B marketers to understand how their content was working right down to the individual visitor; and then use that to deliver a highly responsive, digital experiences that works better. PathFactory was a turn-around built out of data-sharing play started years earlier and it was working.  The company was posting excellent growth metrics that outpaced the industry while  capturing business at the top brands globally.  It consumed every minute I had and I loved it.  But it meant I also had to work to stay focused on more than just the company.  I knew from previous companies I ran how important it was to be present for my family, not to miss the moments that matter.  I also knew I had to keep myself strong mentally and physically and not take those things for granted.  I remember saying to myself – as long as my heart keeps beating, no matter what, I can overcome anything.  By the start of 2019, I finally felt I had achieved the right balance. Family doing great. Check! Business doing great. Check! Mark doing great. Check! What could go wrong? 

Things Goes Wrong

By the time I landed in New York that day, I felt a flu coming on. The next 48 hours was a marathon, so I resolved to push through. It helped that my co-founder and friend Nick Edouard was with me - we always worked well together, and I knew that despite whatever minor illness I was battling, we could cover the ground we needed to on this trip. Initially everything was going fine, but by Wednesday night I was running a serious fever and my left leg was in a surprising amount of pain.

I was really struggling to keep focus that day, so Nick had taken most of the meetings on his own. We were supposed to fly back to Toronto that evening, but I elected to stay one more night in the hotel to sleep off whatever this thing was. Despite my protests, Nick decided to stay as well. His decision to do so would be the first of several that would save my life. 

The next day I was in terrible shape; my fever was 104.5 and my left knee was killing me. I still believed I had the flu, and my knee looked totally normal - no bruises, cuts or swelling - just pain. After many attempts to cure this ailment by pushing fluids and resting, I collapsed in my hotel room and summoned just enough strength to ask Siri to text Nick. He called an ambulance and a few hours later, I was being rushed into emergency surgery at Mt. Sinai West Hospital.

My fate would have been very different without Nick. In hindsight, if he would not have stayed, I am sure I would have died in my hotel room. He also relentlessly pestered and rallied the medical staff and insisted they investigate what was going on with me beyond the initial assumption of a bad case of the flu.  Dr. Hahn, the attending physician eventually became concerned about the leg pain combined with acute fever. He wanted to do an exploratory surgery, but first he would need a CT scan, and that meant someone had to call my insurance company to get approval for a $17,000 test. That duty also fell to Nick. He got on the phone and got it done. When the scans and my blood panels returned, the trauma room suddenly exploded with action. They’d found something—something terrible—and they were rushing me to surgery. I was fading.

Nec-Fasc

A bacteria was killing me. It is called Streptococcus pyogenes. It’s surprisingly ubiquitous: up to 15 per cent of the population carries it with no symptoms whatsoever. In others, it might lead to treatable conditions like strep throat, tonsillitis or respiratory illness, or skin conditions like impetigo. However, in random and rare cases—fewer than 200 in Canada annually—the bacteria might become something terrible. I was one of those random and rare cases. The bacteria had bloomed into necrotizing fasciitis, more commonly known as flesh-eating disease. It was spreading rapidly from my left knee up and down my leg, destroying the skin and muscle tissue. The disease had also caused my body to spiral into acute septic shock, which manifested in dangerously low blood pressure and cascading organ failure. It was rare, hard to diagnose and was going to kill me fast.

To save me, surgeons would have to stop the disease from progressing further by cutting it out. At first, they tried to remove only a 12-inch portion of the skin and fat from my lower leg. Hours later, when that failed to stabilize me, I was back in the table for a more aggressive tissue removal.

My wife, Danielle, was at our home in Toronto’s west end. Our kids—10-year-old Racquel and seven-year-old Max—had just gone to bed when the phone rang. The attending doctor told Danielle I was very sick and that she needed to come to New York right away. I was going into surgery and I might not survive. As the surgeons prepped me, they handed me the phone. I apologized to Danielle for wrecking her evening; I tried to stay upbeat. The room fell silent as I spoke. I said goodbye to her, and that was the last thing I remembered for a long time.

Waking

“You have a breathing tube; we are going to unhook it and extubate you. It’s not going to be pleasant” said Dr Salarnio. As it turns out, having what feels like a vacuum cleaner hose ripped out of your lungs sure snaps you into the moment. And that momentary lucidity lasted just long enough for me to push out just two words:

“that... sucked.”

I heard someone giggle. Salarnio smiled. I felt I should try to follow it up with something a bit wittier, but a second later I sank down into some lower level of consciousness. For the next three days I would float in a sort of inky darkness, struggling for moments of clarity and unable to remember much of anything. I  couldn’t process my surroundings. I didn't know it at the time, but in fact I was recovering from a coma.

The first few days out of a coma are very hard on the brain. Time passes differently in that state. It can seem to the patient like weeks or months have passed, when it’s merely been days. That was true for me; it was  like being utterly alone in purgatory for what felt like two years. I still have trouble putting this experience into words that adequately express the true darkness and terror of it all. This part, for me, was the worst of it. It took everything I had to claw my way back to reality And when I did, I learned that this was just going to be the beginning of my ordeal.

What the hell?

Over the days that followed, my doctors laid it out for me:

First, and for the avoidance of doubt, I obviously did not have a bad case of the flu. I had type II necrotizing fasciitis. I didn't do anything to get it, it just happened - like being struck by lightning. It was bad, really bad, and when the dust had all settled it had cost me most of my left leg.

Second, the nec-fasc had resulted in the worst possible complication: septic shock syndrome. Septic shock is an extreme condition your body puts itself into in response to massive infections like nec-fasc. My blood pressure dropped to dangerously low levels, and most of my major organs – my heart, lungs, liver, kidneys and brain – shut down or nearly shut down. I was near death several times. No one could predict if a full recovery from this extensive shut down was even possible.  But they wouldn’t rule it out, either. It was, at this stage at least, a big unknown.

Third, the lifesaving treatment I underwent had a bad side effect, It starved my limbs of blood flow severely damaged my hands and feet. Upon waking and establishing some level of clarity, I came to realize that many of my appendages were black, and I had a pretty good idea what that meant- they were dead, or at least dying.  

Fourth, I should expect to be in the hospital for months. I was far from out of the woods and still in critical condition. I would later learn that the guidance given to my family and friends in those early days of my illness is that we would take it one day at a time, and that with these conditions, it is often one step forward and one step back.

Fifth, and probably most jarring, I learned that it was no longer mid-February – it was March, and I had been in a coma for weeks. Danielle had left the kids with their grandparents back in Toronto and moved into a hotel near the hospital. She rarely left my side the entire time I was on life support. Weeks later, we discovered that my probability of surviving was in the 5% range.  She fought past all that and kept everyone in the ICU focused on me. Danielle is the strongest person I have ever met, and I would never dare disappoint her by dying.

Coming to Terms

Despite still being hooked up to feeding tubes, dialysis machines, infusion pumps, catheters and a vital sign monitor that was constantly telling everyone how messed up I was, I didn’t really believe any of it. I figured I could go home soon and just walk it off.

But that idea was permanently dispelled the first time I saw what remained of my leg. They painfully removed the elaborate layers of dressings that spanned the top of my leg to the top of my foot to reveal ... well, mostly stuff you don't ever expect to see. “That’s bone, right?” I croaked. The skin on my lower leg was gone, same with the back of the upper leg; the muscles in many parts were gone too. The whole thing looked like something from a horror movie. In order to save my body, the part of my leg where the infection had taken root had to be sacrificed.

I pushed out a few words, the kind of words you actually hear in movies but never expect to say yourself: “am I going to walk again?” Danielle sat next to me as I asked the question to the room filled with medical staff. The room was silent. She leaned into my field of view, and told me with no uncertain doubt “yes, you will walk, but it’s going to take some time and we will get there together.” At that point, I knew I needed to modify my expectations about recovery.

I spent a few more weeks in the ICU, regaining some organ function while doctors pumped me with massive courses of antibiotics. The infectious disease team would show up periodically to draw fluid from under my kneecap, employing a comically large syringe that needed two people to operate. My leg was still completely gutted, and bones and muscles would be exposed for weeks still. The dressings needed to be peeled off and changed every day—an 8 a.m. horror show that required four surgical residents and 30 minutes to accomplish. I was given some oral pain medication but I still nearly passed out from the agony each time. I was also on dialysis, which made me throw up most of what they were feeding me through the tube in my nose.

Fortunately, my organs improved quickly. First my heart bounced back. It had taken a severe beating during my coma and the fact that it kept going during the bouts of septic shock was the main reason I was alive. The cardiac doctors actually had a little celebratory party in the hallway when they discovered there was no permanent damage. My liver (which had failed completely) suddenly seemed okay, too. But my kidneys were only working at about 15-per-cent capacity. They would take the longest to heal. The hardest thing was not being able to move. I was in constant pain from my huge open leg wounds, as well as from the pressure points on my spine and the back of my head. I needed to be washed regularly, and even that was excruciating.

Eventually, I was stable enough to be moved. I’d need extensive reconstructive surgery on my leg, but I had to go back to Canada to get it. My surgeon, Dr. Reid Ravin, reached out to a colleague in Toronto, and I was referred to the burn centre at Sunnybrook Hospital, a self-contained, quarantined facility with a dedicated group of specially trained nurses and doctors, its own surgical suite, as well as pain management, skin bank and critical care proficiencies. They had seen nec-fasc cases before and had a bed ready for me. I had been the subject of hundreds of test and procedures and numerous consultations by experts from multiple fields. The cost of saving my life in New York had amounted to a whopping $1.4 million. The insurance company was pleased I was returning to Canada.

Reconstruction

Danielle figured out how to get an international medevac from Manhattan to Toronto. A day later, two smiling nurses from Montreal appeared in my room, sporting Canadian flags on their uniforms and ushering everyone out of the way. “We’re here to take you home,” they said. An hour later, I was loaded onto a Learjet. A few more hours later, they pushed my gurney through the large double doors on the seventh floor of D-wing at Sunnybrook. Almost immediately, I was injected with a cocktail of painkillers, and for the first time since I came out of the coma, I was in zero pain.

Marc Jeschke, the centre’s medical director, came out to speak to Danielle. Despite all the progress I’d made, he said, I was still extremely sick. My kidneys were compromised, my blood pressure was all over the map, and I was in danger from my wounds, blot clots and respiratory complications. The bacteria was likely long gone, but they were not going to take any chances and planned to keep me on antibiotics till the lab cleared me. I had dry gangrene in my hands and feet that would need to be dealt with, and it was unclear if my leg was salvageable. Jeschke mentioned amputation, and Danielle gasped. She’d suspected it was a possibility, but no one at Mount Sinai West had ever talked about it.

As it turned out, I did need amputations. My left foot needed to be removed, as well as the toes on my right foot and the index and middle fingers on my left hand. Losing pieces of my body was a small price to pay to be alive. Besides, there was lots to celebrate: over the course of six operations, the surgeons at Sunnybrook saved a good portion of my leg. With an aggressive set of muscle and skin grafts, they managed to get me a working knee. Miraculously, my hands healed for the most part. And best of all, my kidneys came back online, I finally started to process some of the fluid that was trapped in my body. The doctors were optimistic about my ability to walk in the future, though I would later lose the left leg below the knee.

By the end of March, once I was back in Toronto and stable, I was finally able to see my kids. It had been more than seven weeks, and I knew they were scared; I was scared too. My young son only wanted to know if all the bad things were over. I told him they were, and that was good enough for him. My 10-year-old daughter was shocked when she saw me. “Dad, your muscles are gone!” she blurted out. She was right: skin was hanging from my arms, and I looked 20 years older. “I’ll get them back,” I told her. She wanted to know everything and see everything. She was so grown up—it was the one time I cried.

After the major surgeries were done, I was transferred to St. Johns rehabilitation hospital, where I had to re-learn to walk and move. But first I had to master sitting upright. Weeks in a coma and twelve major surgeries had atrophied my muscles. They say you lose 1% of muscle mass a day under these circumstances, and they were correct. I had lost 40 pounds and could hardly move. I spent hours just trying to do the simplest things, like lift an arm, or move a leg.

Rehab is much like I imagined it from TV, but a lot more painful. It can take every ounce of your willpower to stand or even take a single step, and your reward is that you throw up and pass out. Rehab is also what you make it. I decided to treat it like a full-time job. My whole world became working out and eating as much protein as I could hold down to regain strength and put on weight.

Throughout this journey, I never turned on the TV or fired up my phone once. I was concerned that those things could distract me from the most important focus - healing myself – and I refused to allow anything to pull my attention away from that focus. I had one job, and that was to try to walk out of this place. In rehab, I took to waking up in the middle of the night and doing slow, tedious laps around the nurse’s station with my walker. Once again, I was fortunate - progress was fast. The doctors told me I owed a lot of that to how I treated my body before my illness; plus I was impossibly stubborn. A short time after they wheeled me into St. Johns, I walked out with only the help of a cane. I took an Uber home and tried as hard as I could to get back to a normal life. 

The Inevitable Setbacks

The illness that would cost me months away from my children, my company and my life was now behind me. It was May when I finally got home, but I was far from fully healed. My body was not behaving, and it would take months to get my strength back and repair my immune system. Despite this, I returned to work almost immediately.

Being back in the office with the team felt incredible. Even with everything that had happened to me, I was still very much in love with the problem we were attacking, very much addicted to the metrics, the culture and the growth. Anyone that has ever been part of a start-up or growth stage company will relate. There is nothing that can really replicate the excitement that comes with being part of a winning team.

I was so proud of the work we had done to date, and I could not wait to see us step it up to the next level. But whereas my heart and mind were committed, the rest of my body was not cooperating. It only took three weeks before I knew I had returned to work too early. I was accustomed to having boundless energy; the kind that let me stay close to details, listen carefully and make hard decisions. Now, it was harder to reach for that energy.

The surgeries had left me in a near constant state of pain that was mentally and physically draining. I was not doing my best work at a time when the company really needed me to. I also had some serious near-term work to complete on my own health and recovery. For myself, I expected nothing less than 100% recovery. For the company, I expected nothing less than excellence. So a difficult, zero-sum choice was forming fast. I could do a good job of running the company or I could do a good job of healing, but not both. True, I could have tried to do a sub-par job of both at the same time, but I had put my family through so much already, and I owed more to my people and my customers than that. I would not be the weakest link, not even for moment. There was only one choice.

The Only Choice

Stepping out of the CEO role at PathFactory was an incredibly difficult decision, but it was the only way to ensure that the business would continue to thrive, that I would be OK, and that my family would be OK. Perhaps not such a hard choice after all. It was mercifully made easier when an individual whom I admired available, and willing to take my chair.

Change is hard, but it happens, often without stopping to ask for your permission. The cards in your hand look like a winner one day, and the next you get dealt a whole new hand. How you play that new hand matters.  The tech businesses I had been running for 20 years taught me a lot about resilience, thinking adaptively and understanding how to get past obstacles.  I now had a chance to practice some of that with me as the subject. The hand that nec-fasc dealt me was an extreme experience that at times, really did feel like I was in some sort of Hell; but it’s an experience that is now forever a part of me.

Gratitude

As I look toward the future, it’s with a sense of clarity about what is most important in life and with great optimism for what is to come. Life is short, and I am grateful to be here to experience it with the people I love and respect. Gratitude is an interesting state of mind. It makes you aware of so many things – what is real and what is not - yet does not dimmish your drive or ambition at all; quite the opposite in fact.  I look forward to building more businesses and contributing to the tech community in Toronto. Danielle and the kids are also doing great. After a long and scary interruption, our lives are starting to feel normal again. We’re back to making plans, laughing and spending time talking about anything other than me. For that, I am truly grateful.

The list of folks to thank is long and it reads like movie credits. To everyone who helped me, healed me, and cared for the things I hold dear when I couldn’t - thank you.