How Lyme Disease Made Me Stronger

September 04, 2012 8:00 am by lisahickey in Career

 It always starts so innocuously, doesn't it? A barely noticeable stiff neck, just something surely attributable to 17-hour days in front of a computer, the life of a geeky internet CEO who sees no better way to spend a weekend than double- and triple-checking the strategic plan by testing multiple sets of metrics, comparing spreadsheet versus spreadsheet and getting so good at Google real-time analytics that I could post a story and predict the number of visitors per hour.
The fun part about building a business is building the systems that work together to continue growth at a predictable rate. A supernova -- an ever-brighter, ever more visible entity that draws more and more strength to its core from whatever energy source is available.
At the core of every great business is a great idea. The idea behind The Good Men Project -- our nucleus -- was as good, as different, as disruptive as the best of them. "Spark an international conversation about what it means to be a good man," was the original vision of founder Tom Matlack.
And so we talk. And hundreds, thousands and eventually millions join in the conversation. Talk about sex and relationships, fathers and sons, masculinity and gender, war and economics. I remember chatting with Jackie Summers about the fact that, after a particularly heated series on race and racism, we had throngs of racists and bigots coming out of the woodwork.
"Why won't you let us be racist?" they'd complain. For the first time since becoming CEO, it occurred to me someone might want to firebomb my car. Clearly we were on to something. Jackie said to me, "You didn't really think you could start a major conversation about men and goodness without changing the world, did you?"
So when the neckache started to spread to a headache and work became not quite as much fun, I felt the first twinge of worry. It was a very visual headache, like someone shooting a dart gun at the back of my head every 38 seconds.
I spent a week navigating doctor schedules, insurance procedures. On Monday, realizing I'd need a both a brain MRI and neck MRI to get treatment for what doctors suspected was a pinched nerve, I walked into the emergency room and refused to leave until I got them. There was some unexplained swelling, an edema, which prevented me from getting the treatment for the pinched nerve they had promised me.
I was pretty annoyed at that point. I just wanted to work without pain. I needed something to happen.
And it did.
Saturday parts of my face and neck went numb. Back to the ER. They released me after extensive several teams of doctors still thought that the swelling was causing the nerves to pinch which was causing the numbness. I rationalized away with them that it was no big deal -- "it's just a little numb." I could still work. Why worry?
Until Sunday morning, when I woke up, took a drink of water and couldn't swallow it. This wasn't a kind of "hard-to-swallow" that happens when you are trying to eat with a bad sore throat. This was unable to swallow like the water would get halfway down my throat and suddenly explode. A doctor later told me "you weren't swallowing the water, you were aspirating it."
This time at ER, there was a newfound urgency in finding out exactly what was causing a complete meltdown. My voice was changing to an entirely different octave than usual. I couldn't lift my arms. My face was becoming asymmetrical. A doctor took this funny looking tube thing that curled up around my head, up one nostril and out my mouth. When it was done the doctor said gravely, "Your vocal chords are completely paralyzed."
Finally a jovial neurologist came into the room and said the words that helped get to the bottom of what was going on: "We need to do a spinal tap."
For me, the greatest stress reliever in the world is hiking the highest mountain I can find. I've climbed Mt. Kilimanjaro in Africa, The Rockies, The Swiss Alps, Death Valley. I've climbed every single trail on Mt. Washington, sometimes climbing Mt. Jefferson and Washington both in the same day,
I know to take precautions against ticks. I wear high socks and long pants. I use bug spray, I check for ticks after every hike. I check for bites, know what a tick bite looks like, know to get it treated immediately.
So when the spinal tap showed Lyme parasites

in the fluid that runs between the brain and the spinal column, it was a complete surprise to me as much as everyone. Lyme disease? Really?
As I saw how quickly my body was shutting down, I knew what was coming next: "We need to intubate you." The doctors had started an aggressive course of antibiotics the minute they found out. But it couldn't be quick enough to counteract the fact that my diaphragm did not want to breathe for me.

Image via The Good Men Project.

Later, they took the mouth tube out and did an actual tracheotomy. In the funny way the mind of a hospital patient works, while waiting for mine, I kept hearing construction sounds. Drill. Drill. Drill. Hammer, Hammer. Hammer. Pop. Pop. Pop. Had I suddenly arrived at a tracheotomy factory?
I love being CEO of The Good Men Project. I think that what we are doing has profound and important implications. We've built something valuable: a community of people who want to talk about men and goodness.
As a CEO, I also relish the chance to tell our vision to anyone who would listen. Of the hundreds of doctors and nurses I saw, many wanted to know what I did, and I told them. Even if it meant I had to mouth the words, use hand signals, write it down, spell it out, or call it up on my phone.
Everyone got it. Everyone had something to add to the conversation. One nurse: "You know, I think about this with my son. We all want him to grow into a 'fine upstanding young man.' That's the goal, right? But how? What does that mean anymore?" Another: "I work with a lot of men who are dying. And they are angry. Really angry. I wish there was a way to get through to them." A male doctor, obviously completely comfortable in his own skin, said simply: "I like being a man. That is good."
And a funny thing happened to our scalable business model when I got a tracheotomy. It got stronger. Teams of people who currently hadn't known each other before started working together. When people couldn't turn to me, they found some else to help figure it out.
All those connection points we've been building, all the networks we were putting in place, our team stepped in and made them stronger. Led by Editor-in-Chief Noah Brand and Senior Editor Joanna Schroeder, they didn't miss a beat.
The entire staff used this as opportunity to further learn how to scale.
It is two days after my tracheotomy, and my first day at a rehab where I need to go to regain muscle strength and learn to breathe on my own again. My own personal connections are being strengthened as well -- my two awesome sisters came to visit and we bonded like we were teens again.
My son and one of my daughters have now come to visit me. My daughter has brought in the new Taylor Swift song for me, and Shannon does the most amazing rendition of what's sure to be a next pop hit. My son and I are talking frankly and fearlessly about everything from his job to his girlfriend. He calls up The Good Men Project on the laptop to show me how well it is doing in my absence.
There is no place I'd rather be then right there in that moment. Not despite everything -- because of it. For those that don't know joys in tracheotomies, perhaps don't know where to look.