When I was a kid, all I wanted to do is play. If I wasn’t with my best friends playing a pickup game of football, basketball, kick-the-can, or whatever. Then, we were out building forts and exploring the vast wilderness that engulfed our neighborhood. If I wasn’t out playing, then I was thinking about the next adventure.
I swear, I spent the last half hour of every school day looking at the clock, wondering why this last class took longer than all the others. “Hey, did the minute hand just go back a minute? Heck I’ve things to do, new worlds to invent, characters to become.” There was this culvert next to my best friend’s house. Its real purpose was to drain water from one side of the dirt road we lived on to the other, but we used it for a playground. After a hard rain, we’d throw sticks in the rushing water and watch them float down to the ravine behind our houses.
I’ll bet you one day archeologists will unearth scores and scores of missing-in-action army men, and action figures that didn’t survive the rapids. Even when it wasn’t raining, that culvert was a cool place to play. We jumped from its banks into the sandy base, ride our bikes down one side, not the other. We try to jump across it, make little sand cities for our action figures.
When I was 13, life was one Mark Twain-esque adventure after another. One day, we were down playing in the culvert and when I jumped off the left bank, it was just another glorious day in the life. The moment I landed changed my life forever. I shattered my ankle on a rock just below the sandy surface. It’s crazy but within days, the pain of the injury was nothing compared to the pain of not being able to go out and play. I don’t remember why, but a decision was made somewhere along the line, not to put me in a cast.
That was good for 13-year-old Cale, but not so much for future Cale. 13-year-old Cale was out playing football with his friends within a few weeks of the injury. At first, I’d have to hop around and avoid putting any weight on the ankle because it hurts so bad, but eventually, I just got used to the pain. My mom tells a story that she’d look outside to see me playing football while other kids were playing with my crutches.
Well, as you might guess, my ankle didn’t heal properly. Over the next year, I twisted that darn ankle more times than I can count, and now I was also starting to trip a lot. Doctors took a closer look and concluded that some of the bone fragments from the shattered ankle, didn’t heal and they were causing my issues. I had to have surgery to remove the pieces of bone.
Good news was though that after the surgery and some rehab, everything should be pretty close to normal. Well, except for my ankle might be missing a few pieces of bone. I never kept count of how many injuries, rehabs, and surgeries I’ve gone through. Maybe I lost count or perhaps I don’t even want to think about it. Honestly, I don’t look at those moments all that often. I suppose with each instance, it became less tragic and more just a part of my normal.
Now, there are a few defining moments that I remember like they were yesterday. In 1983, I was 15 years old. Because of these recurring injuries and because I was tripping all the time, doctors looked deeper at potential other causes. Looking back, it seems like every week I was seeing one specialist after another, they hooked me up to these machines.
They interviewed me and I was poked and prodded in every way you can imagine.
What I’ll never forget is the day they told us what was really going on. I was suffering from a hereditary neuromuscular disorder called Charcot-Marie-Tooth disease. What is Charcot-Marie-Tooth disease? Our nerves have a sheathing around them, a lot like an electrical wire. That sheathing contains the electrical signals that go from the brain to the appropriate muscle. Charcot-Marie-Tooth disease or CMT causes that sheathing to break down.
The electrical signals fizzle out before they get to their destination. Typically, CMT impacts the lower extremities. In short, over time, I’m going to lose strength and control of my feet, wrists, and hands, total bummer. In data analytics to put it really simply, we collect data, we analyze the data and then we make decisions based on that data. Let’s take a look at the data I’ve gathered so far. The data where I’m 15, well that means I’m not that smart and I’m still super active.
When I plugged in that data, I had to come to terms with the fact that the best days of active outdoor-adventure Cale were behind me. I had to somehow wrap my head around the fact that even though I hadn’t contemplated my future much, my future was not going to be normal. Now, the next piece of data was that I was going to lose strength in my wrist, hands, and feet. Someday, I might need a wheelchair. Well, at that point, we have to park that data because there’s nothing we can do about it until that progression takes place. The last piece of data was that I was continuously injuring my ankle and tripping a lot. We plugged that in, we decided to fit me with leg braces. The braces actually weren’t that bad. They fit inside a shoe about a half size bigger than normal.
They went under my pants, and for vanity sake, I actually wore an extra sock over the top. You couldn’t see them even if you were checking out my ankles. In high school, there’s a number of issues with hiding your leg braces, like gym class and the ensuing showers. Also, it was 1983, the era of straight-leg jeans. Straight-leg jeans made it difficult to contain the braces because the braces would poke out the sides, just under the knees. Of course, when you’re wearing straight-leg, acid-wash, button-fly jeans, you cannot have braces sticking out the sides because that’s just not cool.
Do you imagine if I had to deal with those braces in today’s skinny jeans? Oh, my God. Yes, the drama seems really ridiculous to me today, but come on, I was 15. That’s a lot to take. I had to wear braces on my legs, and at 15, one’s physical abilities are still on their way up. They haven’t even peaked yet. Mine are declining. I don’t have the tools to deal with all that at 15. Hell, I’m pretty sure I faked being sick at least once or twice because of the unsightliness of a runaway zit. “How am I going to handle this?” As my teenage years go on, I’m learning more about my strengths and weaknesses.
That means I have more data that I’ve taken in, and I can make some more decisions on how to improve my situation. Let’s take a look at the data. Data says I have a strong urge to spend time with girls, but I might not be their most desirable candidate. I have to work harder at getting dates. I end up going to an embarrassing number of proms and homecomings, with some amazing young women. The next piece of data was that I knew that I had this physical abnormality causing an awkward walking style, but I still need to fit in.
What I did with that information was I became a singer in a few rock bands, and along with my friends and my spectacular mullet, we partied like rock stars. One last piece of data that I was learning, I had no idea what I was going to do with my life, vocationally speaking. I took that information. I tried my hand at continuing education on a few separate occasions. That didn’t really take. Since I had an affinity for computers, entertainment, and marketing, I started building websites, and I started a career in radio in the early to mid-’90s.
In the continuum of my life, we’re at the next critical moment. The last surgery I had was when I was in my late 20s. Remember, my prognosis is that I might need a wheelchair someday. In my late 20s, I was definitely struggling to get around. By that time, I was using at least one crutch to help me walk. The biggest hitch to my gait-up at that time was my right Achilles tendon tightened, significantly inhibiting my balance, my gait. Otherwise, the progression of CMT didn’t seem as quick as I had imagined. I was feeling pretty good.
I thought if I could just remedy this one problem, I might be able to walk without a crutch for the foreseeable future. Under the knife, I went. After that surgery, the rehab was going way better than expected. I was walking quite well in physical therapy and around the house, and except for the occasional SNAFU, I was really excited about my progress. The SNAFU was like when you walk and you have that bone that cracks in your ankle. Only mine was a little bit more intense and would cause my knee to give out first split second.
Other than that SNAFU, which really only happened when I got up in the morning, and after sitting for a while, I was really hopeful that I found a workable solution for this whole CMT thing. I only had two physical-therapy appointments left. I was feeling so confident and excited that on my way out for dinner one night, I said, “I’m going without crutches.” Off I went. I took my first crutch-free step to freedom and SNAFU. I went down in a heap, and I twisted my knee and my ankle on the way down. I screamed as if I had just been shot. That was it. I knew it.
I knew in that moment, there wasn’t going to be any more surgeries. There wasn’t going to be any more rehab. Charcot-Marie-Tooth disease beat me. Physically, I had enough. There it was, the realization of that prognosis from 13 years earlier. In that moment, my disability became an immovable fact. They really knew what they were talking about when they spelled out how Charcot-Marie-Tooth disease would play out over time.
Even though it seemed like I might have been able to thwart some of it, I found out the hard way that you can’t escape the facts. From that point on, I never got beyond using two crutches. At that time, I was a radio announcer in Milwaukee, a sedentary job if ever there was one. I gained weight and experienced a number of associated issues like, a recurring back issue that made it even more difficult to get around. In fact, I had to resort to using a wheelchair from time to time. It was all happening just like we thought. This next moment I didn’t know was a defining moment at the time. I was 40 years old. It was around the holidays. My girlfriend wanted to go shopping at the mall. I was feeling okay, but I knew that there was no way I could go the distance on crutches. She says, “Why don’t we just take the wheelchair?”
“The wheelchair in public? Oh, man. I don’t know.” I was embarrassed to be seen in a wheelchair. I realized I was going to be missing out on an awful lot, if I didn’t start using it. Reluctantly, I went to the mall in the wheelchair, and would you believe? It was awesome. I could go for miles. People got out of my way. I didn’t have to shamefully sit on a bench outside some store she wanted to go into. I was already sitting, and I could go anywhere I wanted. In the parking, are you kidding me? It was liberating and I’ve been using a wheelchair ever since.
The data was that I knew that I had this disability that was affecting me physically. I determined that I can’t let it bring me down in any other way. Here’s what I did with that data during that time. I bought my first home. I started and operated a successful small business that focused on digital marketing, and website, and application development. Oh, and then there was a new data point that needed to be dealt with. The great recession of 2008 nearly killed that business, [chuckles] and me. What did I do? I pivoted and I came back even stronger.
Throughout my career now, I’ve worked with some of the world’s largest brands like Honda, Tetra Pak, Kohl’s, and GE. I’ve also been fortunate to work with some of the smallest brands and the people that operate them. Now, I live in a great neighborhood, in a fantastic house I built with the incredible woman that I live with, and for whom, I’d kill or die. That’s what I did with the data I was given. A little disability like Charcot-Marie-Tooth disease wasn’t going to keep me down. I kicked its ass. I took in the data. I made the adjustments.
I made sure my life was still awesome, despite having this disease. Mine is not a sob story. There’s a non-zero chance that had I not been diagnosed with Charcot-Marie-Tooth disease, none of the things I’m most proud of would be true. I wouldn’t be who I am right now. That’s why data is so important. It’s like cheating the system. It’s all around us, all the time, and we get to learn from it and use it to modify our approach. It allows us to continuously learn, adjust, and improve.
This isn’t even the best part of the story. It gets way better, because recently, I found out I don’t even have Charcot-Marie-Tooth disease. I never had Charcot-Marie-Tooth disease. They got it wrong. Little things had always gnawed at me about my situation. One day, I asked my doctor if we could dig deeper. I went to see renowned neurologist, Dr. Stanya Smith. After MRIs and all kinds of tests, she concluded that I have general neuropathy in the lower part of my legs, impacting only the tibialis anterior muscles.
Wait, what? The tibialis anterior muscles are the muscles responsible for flexing your foot upward. That’s it. This is commonly known as foot drop. The abnormality could be congenital or caused by any number of injuries. The bottom line is the simple bracing they did in the beginning, should have been enough to keep me walking for my whole life. Sure, I wasn’t going to be a football player or a basketball player or run marathons, but I never should have progressed to the point of needing a wheelchair.
All these years later, finding out I don’t have Charcot-Marie-Tooth disease is exactly as life-altering as the day I found out I had it. On one hand, I’m excited that the limitations I thought aren’t going to be all that limiting. On the other hand, I’m pissed. It’s not like now that I know I can just jump up from my wheelchair and walk. The atrophy, the psychological scars from all the injuries. Physically, I’m in a condition, not dissimilar from CMT. After I found out, it took a few days, but I realized there’s no one to blame. Well, no one to blame but me.
I’m the one who settled. I’m the one who never questioned. I’m the one who stopped trying because I believed inaccurate data. I’m the one who stopped collecting data that might have pointed me in a different direction, or caused me to take different actions. Think of all the decisions I made based on what I thought to be a fact. The inaccurate diagnosis of progressing physical challenges, became a self-fulfilling prophecy.
That “knowledge” I had caused me to stop trying because I believed the outcome was beyond my control. That’s how powerful our beliefs can be even when our beliefs are founded on bad information. I know no one can say with any certainty at all, that had that diagnosis been right, worse, or better, that my life would be any better or worse. In every other aspect of my life, especially the professional side of my life, I’m always gathering information, always questioning whether it’s accurate. In the physical-disability part of my life, I’d been working up data from 1983. That’s embarrassing. You won’t find many people like me who have experienced such profound learning.
If you can learn anything from my profound mistakes and subsequent profound learning, I hope it’s these next two things. First, we must always be collecting data. A, always, B, be, C, collecting, D, data. That’s my Glenarry Glen Ross rip off
Thank you. Thank you very much. What we learn to be true today might not be true tomorrow. In my case, it’s easy to assume that the doctors were to blame for the misdiagnosis, but again, there’s no one to blame but me. Doctors weren’t going to be calling me every year and update me with their thinking on new options for re-diagnosing me.
The only way I ever would’ve been retested and re-diagnosed, is if I made the appointment. In my case, there were always things that bothered me about my diagnosis and my experiences, like my wrist and hands never weakened, in fact, [chuckles] I can open a pickle jar with the best of them. Why didn’t I make an appointment to dig into that earlier?
To wrap up takeaway number one, if you don’t want your business to end up in a wheelchair, always be collecting data. I think the best way to start the second takeaway is with a quote from Ray Dalio in his book, Principles. He says, “Don’t get hung up on your views of how you think things should be, because you’ll miss out on the learning of how they really are.” Damn it, Ray, why didn’t you write that book 30 years ago so I could’ve been as inspired by it then, as I was when it came out? His point is so ridiculously-logical. That’s how you’re supposed to operate.
Through his career, Ray created the world’s largest hedge fund based on the philosophy that no matter how sure you are about what the data’s telling you, you could be wrong. From my experience, the more right you think you are, the more wrong you could be. That doesn’t mean you have to be paralyzed by, “Well, the data seems to be telling me this, but what if I’m wrong?” It simply means to keep collecting data and keep an open mind.
Admittedly, Adam Grant’s book, Think Again was a significant source of inspiration for me to tell my story, to get businesses to take data analytics seriously. His book is about learning the type of thinking that was forced on me because of a misdiagnosis. Basically, the book’s about knowing what you know is important but knowing what you don’t know is vital. In the book, there’s this three-sentenced excerpt that hit me square in the– Well, a very sensitive area. [chuckles] It goes like this.
When we dedicate ourselves to a plan and it isn’t going as we hoped, our first instinct isn’t usually to rethink it, instead we tend to double-down and sink more resources in the plan. This pattern is called escalation of commitment [sound].
It’s like he was using my story for a case study. I was grated to adjusting to data that had shown up on my doorstep, but I failed to continuously collect more data on my disability, question that data, seek other opinions and test the truth by pushing as hard as I could to find out what was possible. Instead, I settled for an assumption based on inaccurate data.
If any new data came in and contradicted my belief, I’d discard it. If any new data or thinking reinforced or supported my belief, I’d say, “See, it’s all happening just like they said.” The second takeaway is this, we obviously need to be collecting data, but it’s equally vital to keep an open mind about what the data is telling us. Data is not there to tell us what we want to hear, data is there to tell us what we need to know.
Sherlock Holmes has a famous quote that says, “It’s a capital mistake to theorize before one has data. Insensibly, one begins to twist facts to suit theories, instead of theories to suit facts.” That’s from Sherlock Holmes by way of Sir Arthur Conan Doyle, the author.
Again, data is not there to tell us what we want to hear. It’s not there to support what we already believe. It may do that, but data is really there to tell us what we need to know. Keep an open mind. The more data we collect, the more often we collect it, the more we can compare our beliefs and assumptions against what’s really going on. If we’re not always collecting data and keeping an open mind about what the data is telling us, then we’re crippling ourselves or we’re crippling our businesses. Take it from me.