I learned to take my rare disease and turn my disability into an ability.
Each year in Canada, at the end of February, we want to bring awareness to rare diseases. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. It’s never too early to get involved!
In The United States, any disease affecting fewer than 200,000 people is considered rare. This definition comes from the Orphan Drug Act of 1983 and is slightly different from the definition used in Europe. There are more than 7,000 rare diseases affecting 25-30 million Americans. In other words, one in ten Americans are suffering from rare diseases and more than half of them are children.
Besides dealing with their specific medical problems, people with rare diseases struggle to receive a proper diagnosis, find information and get treatment. The rarity of their conditions makes medical research more difficult.
Let me now share with you the story of my rare disease, and how it has impacted my life in various ways. Many people who regularly follow my posts quickly notice I don’t wear shoes. I’m rarely ever seen or photographed shod. Even in the very cold, Canadian Winters. There is a serious reason behind this.
In my youth, I was diagnosed with “Thermoregulatory Plantar Hyperhidrosis”.
The long and short of it: I can’t wear shoes.
The reason is because almost all my body heat is radiated out through my feet. This means I usually feel cold, although I have very good circulation. However it causes a huge assortment of issues that few people can comprehend.
With a good percentage of my body heat being directed towards my feet they are always hot. This means any form of covering will create a series of conditions, which if left unattended can cause serious pain, and even pass out.
If I wear shoes of any sort, it does not take long before my feet will heat up, swell, peel, and cramp badly. The peeling leaves serious blisters, and the cramping is debilitating and stops me from being able to walk properly. This happens even when it’s cold out and is brutal in winter. If I wear regular boots to protect my feet, it triggers my symptoms of heat, sweat, cramp and peel. It’s horrible to go for hikes in the winter months as a result.
How Was It Discovered?
Growing up I was lucky enough to be in the country, so shoes were always only the thing you wore to go to school and shopping. Shoes were not required for picking and packing peaches on the farm. I wanted to be like all the “cool kids” and had my parents buy me the canvas Converse black and white canvas shoes. I proudly wore my new shoes, only to have debilitating pain by the end of the day, and my feet looked like they had been in the bathtub all day. Wrinkled and peeling skin. My parents figured they were cheap shoes and threw them in the garbage. They were replaced with Reebok High-top “pump” shoes. The latest in 1990s fashion costing hundreds of dollars. The exact same situation occurred after only a few hours of use. It was from there, that the problem was discovered.
Reebok Pump shoes from the 1990s
The big issue with growing up in a Polish household and military family was that there was no such thing as disease or disability. It was “all in your mind” or “there is no such thing” or “You need to toughen up”. This attitude does help one grow stronger, but causes untold suffering for those who try unsuccessfully to deal with diseases that are, in fact real and rare.
Over the years I have tried dozens of styles of shoe from all mesh shoes, to real leather moccasins, to those five finger toe shoes, and everything in between. The only thing that helps my condition is no shoes at all, barring that sandals. Socks? Forget them. I haven’t owned a pair of socks in almost two decades.
What May Have Caused It?
Like many conditions it is always challenging to find the root source. Most likely it was caused by severe deformities in my feet when I was born (sometimes called “club foot”) that was corrected with physical alterations of my muscular skeletal system as a baby. It involved twisting my feet and legs and casting them for several years until the issue was corrected. This may have caused nerve damage which created situation.
How Has It Affected Your Life?
Living in Canada, we are very much a shod society. Unlike India, or the Caribbean, it’s not very common for people to go without shoes on a regular basis. If I choose to go barefoot, I am often thrown out of stores. There are a few stores that don’t care, but most grocery stores, hardware stores, and other necessity shops will ask you to leave if you’re barefoot. Battling them does no good as the concept is so foreign that most stores will quote non-existent “health code rules” (they don’t exist, check for yourself).
Making a living has been very challenging. There would be no possibility of having a career in a factory, in the military, policing, or any job where closed shoes are mandatory. This lets out a good percentage of jobs. Especially skilled trade jobs, where the money is for most men.
I was interested in a career in policing and passed all the preliminary exams and testing. When it came to the running, known as the “beep test” I was unable to sustain running without severe cramping caused by having to wear running shoes.
Instead, I become a teacher and worked at the YMCA for a few summers. I was working at outdoor camps. I advised the staff and provided medical documentation that unfortunately I am unable to wear closed shoes on the job. I was met with YMCA lawyers who advised me that if I refuse to wear closed shoes, and keep taking my shoes off during my breaks, I would be dismissed. Their health and safety regulations override my disability. “But the campers can wear sandals” I tried to reason. I was quickly told that was irrelevant. I had to make a choice. My disability, or my job. I did write a scathing letter to the Canadian director of the YMCA about how shameful their inclusiveness policies are towards staff, but it was never answered.
As I spent time as a travel blogger and created a YouTuber, people noticed the bare feet right away and it got me some fame. I was the first person to hike the entire 850km of the Bruce Trail barefoot in 2009. The notoriety got me the nickname “barefoot adventurer” and got me a bunch of speaking tours and helped my success on YouTube and the internet. I did not ever disclose my condition to anyone, except close friends.
Eventually I settled on starting my own business, named Barefoot Bushcraft. It’s called that because it represents teaching primitive skills, but also lets me work barefoot full time and earn a modest living. The organisation has now been in operation almost a decade and we hire summer staff. Going barefoot for staff is optional, although most choose to.
I learned to take my rare disease and turn my disability into an ability.
Some Of The Negative Comments
As most people know, many people are ignorant. I’ve heard all the various mockeries, especially having a YouTube channel. People always have inappropriate remarks.
“Put some shoes on f**got”
“I’ve never heard of any disease like that”
“this is another one of your made up disabilities”
“it’s all in your mind”
“What do you do in winter?”
“You go barefoot all the time, you must have quite the foot fetish”
How Do You Handle It?
The truth of how I handle my rare disease applies to all disabilities and diseases: I suffer. The suffering is brutal as if I go hiking in my bare feet when its +3C out there is still snow, ice, and mud on the ground. If I wear shoes I cramp up and can’t hike very far. If I go barefoot I literally freeze and feel miserable. Sometimes things like the Vibram Fivefinger toe shoes work to provide a little insulation from the cold while still keeping my feet cold enough not to trigger my sweat response. It’s no fun.
I choose shops that don’t care if I go in barefoot.
Those that I don’t want the confrontation (to which I always lose), I will wear sandals in the warm weather and thin moccasins in the cold.
I run my own business where I make the rules and make enough to survive on, and hire staff.
I’ve learned to capitalise on keeping the rare disease part hidden, and promote the barefoot part. It has set me apart in the outdoor community and helped me garner great success.
Has It Changed Over The Years?
Yes. It’s gotten significantly worse. It used to be I could wear shoes for a few hours a day and complete rudimentary tasks. This includes work and go unshod at breaks and lunches. The sweat response was pushed off by the cold. Over time my cold tolerance has significantly increased and my feet have to be kept colder, and colder to fend off triggering the response. I used to be able to wear shoes when it was +10C or colder. I was fine. Then it dropped to zero degrees, or freezing. Autumn and winter were great because I could wear shoes like a normal person. Thin summer mocassin shoes were the best.
Over the last few years it’s now necessary to keep my feet even colder, at below freezing temperatures to be comfortable. This is unfortunate as it’s a fine line between being comfortably barefoot at -3C and risking potential for frostbite or other damage.
In summer it’s always fine. I enjoy going barefoot and feeling the warm earth under my feet.
Diagnosis Treatment Options
It was only a decade ago when a doctor stated “if you can’t wear shoes, you can’t wear shoes. Stop wearing them. You have a rare disease. Here is a note stating why.” That diagnosis changed my life. It was the first time after decades of suffering I had some validation to my condition and understanding that it truly was not in my head. My suffering was real. There was a cause, and what I had done to control my condition was beneficial.
Like many people with a rare disease or disability, I learn to tolerate it but don’t really like being this way. Before being told that my solution was the appropriate one, I had various give me treatments over the year including dozens of different doctor prescribed creams, injections, even electric shocks. Not much has much success.
There is a surgical procedure where they cut off all the nerves to stop your feet from sweating completely. However the procedure has significant complications including transferring the sweat to your face, and lower back which causes more issues than leaving it alone.
Sadly, like many rare diseases and conditions, there are not many viable treatment options.
The Way Forward
I still struggle to discuss my condition, and have worked very hard to not be ashamed of it. It’s taken over a decade to have the courage to write this article. In the end we all have our struggles in life. I have allowed my rare disease to define my character both personally and professionally. However I have put a positive spin on my situation and used it to help create fame and intrigue amongst my followers. We do what we can to cope with the hand we were dealt in life (or foot in my case). This article is the first time I have revealed my rare disease to the world after decades of suffering, to celebrate world Rare Disease day in February 2021.
Hiking barefoot at -3C in March 2021