Bear in mind, however, that I'm a professional storyteller. So, while my story may read more like a short book, it is not anymore important than anyone else's.
For some time, I have been working on my own, separate piece about my personal history with TC's. It's an important story for many reasons but mainly because my story is often thought of as "worst case scenario": 43 years old, totally disabled with more than two dozen medical conditions that can all be traced back to suffering from joint and muscle pain since my first breath.
But, then a "friend" from a Facebook group, specifically for people experiencing tarsal coalitions, either within themselves or in a loved one, reminded me of the good times I've had in my life; in spite of the pain that has plagued me all my time on Earth. So, instead of sharing my misery with you in this space, I'm going to attempt to share some fond memories and hopefully one or two pieces of wisdom along the way.
When we are born into pain, how do we define pain? If we can't remember not suffering, how can we determine exactly how bad we're suffering?
I never won a race in lower primary school, but although I wore leg braces until I was three years old, and I wore orthotic supports in my shoes from then on, I liked running as a young boy. I remember I had a pair of Zips tennies, which I believed made me even faster (vintage 1970's).
Once in a while, an orthotic would break in my shoe. Other times, my ankle simply locked up mid-stride, and I'd fall, but I always got back up ... every ... single ... time.
I played basketball from seventh through ninth grade. At six-feet-three-inches tall, at age 12, I was easily the tallest kid in our conference. There was just one catch: Because of my tarsal coalitions, I was slower than most, and because I had almost no range of motion in my ankles, I couldn't jump. There were kids in my ninth-grade team, who were a full foot shorter than me, who could dunk the ball, and I could still barely touch the net, because I had no lower leg strength ... because I didn't use my lower legs to walk or run. And, although I had shin splints the entire time, and I wasn't very good, I still enjoyed most of that experience; being part of that team, despite the fact that I was the tallest bench warmer in the school's history.
After ninth grade, I wasn't allowed to compete in school sports, because my TC's were an insurance liability for the school. So, I put all my effort into band, choir and drama; going to All-State for band on bari sax twice, for choir twice and for drama twice. Marching band was horribly painful, which was why I didn't pursue my musical endeavors my senior year.
But, I could still walk ... most of the time. I'd had a job at a local cafe, beginning when I was 13 years old. And, although the pain nearly crippled me, I kept that job for three years; eventually changing to another restaurant job. The pain I had during each shift was noticeable, but it didn't stop me. No, the worst pain came the next day; after my muscles and tendons were allowed to relax for the night.
(Me in the cafe at 14 years old and 6'5" tall)I crawled to the toilet for the first time because of TC pain, when I was 15 years old. So, instead of walking, I started bicycling; my lifelong dream being to earn a spot on the USA 7-11 team, riding side-by-side with Andy Hampsten. Thanks to my strong thighs and back, I was fast on a bicycle, too; flying at an average speed of 27 to 29 mph on level pavement and zipping by cars driving 60 mph down hills. At that time, in spite of my TC's, I was having the time of my life.
(Andy Hampsten, left)But, as I was training for my first race, while speeding down a hill at around 50 mph, it became painfully clear that I just wasn't meant to be a world-class cyclist ... when I hit a dog that crossed in front of my lightweight Fuji bicycle. But, with blood dripping and skin hanging from me, my left shoulder dislocated and my helmet chin strap lodged in my throat ... I still got back up and limped to the nearest building where I saw people, who then drove me to the emergency room.
My senior year of high school (90-91), my coordination finally caught up to my six-foot-five-inch body. And, while I couldn't compete in school sports, I became very competitive in Physical Education; wearing Nike Air Jordan high tops with my orthotics the entire time. For the first time in my life, I wasn't the last one to be picked. And, I'll never forget the time I made the game-winning catch in a PE softball game. Heck, I was even one of my school's best dancers.
At 17 years old, I followed my second dream, which was to serve in the United States Marine Corps. But, my application was denied because of tarsal coalitions. It turns out that a tarsal coalition is cause for immediate medical discharge from the armed forces. Of course, no one warned me about that, because most people have never heard of a TC, so how would they know?
That was, however, the most devastating time of my physical being; when I was forced to acknowledge and accept my real limitations for the first time. I was crushed. Not having applied myself academically, I was planning on serving in the military. And, when that dream couldn't become a reality, not much else seemed to matter.
I barely graduated from high school; after which I became a bartender for a local pub. Two years later, I found myself homeless and hitch-hiking all over the U.S. west coast. I slept in national forest preserves, hiked near all kinds of wildlife (including bears), drank from mountain springs and skinny-dipped in crater lakes at night, under meteor showers.
In one year, I put over 1,000 miles of hiking distance on an old pair of Redwing work boots, without orthotics, and over 5,000 miles of total travel distance. And, although the pain was often extremely difficult to bear, I didn't stop. There is nothing like soaking your inflamed feet in an ice-cold mountain spring at dusk; hearing the sounds of the wilderness come alive as the cool water washes away any and all worry and discomfort. That was the second "time of my life".
(Me after my travels)At 25, finding myself back in my home state, with winter coming on, I decided to settle down for a while. So, I picked up a copy of the local newspaper and applied for a job therein; as a reporter for that newspaper. With no experience and no education, I was hired, because as my new editor put it, "You tell a good story, and I figure that if you can tell a good story, you can write a good story. You just need to be shown how."
And, I was a quick learner. In my first year as a journalist, I earned an honorable mention in my state's annual newspaper contest. A year later, I was offered a job as a crime writer for a larger Associated Press paper. And, after one year in that job, I earned a second-place AP award.
(Me, 2004)After 2004, I hired out as a newspaper manager and editor all over my state; mostly in temporary positions. Somehow, I had what many newspapers wanted.
In my 10 years as a journalist, I lived in more than 20 different locations and had professional connections from ranging from local law enforcement to the Defense Department and everything in between. United States senators knew me by name and reputation, and my stories were re-published internationally. It was, yet again, the time of my life.
I thought I was unstoppable. I was in the big time, and I was loving every minute of it. I never suspected that something as simple as a flight of stairs could end it all.
In 2008, while working as the news editor for one of my state's dailies, I noticed a pain that had long been forgotten. My feet were inflamed for the first time in nearly 20 years. Soon after that, I experienced a surge of pain in my spine, tingling and numbness in my fingers, and my feet were swollen to nearly twice their normal size.
An MRI showed I had two bulging discs in my spine, while a CT scan showed arthritis in my feet; although the podiatrist I saw at the time had no idea what a tarsal coalition was. My primary care physician, chiropractor and podiatrist all agreed that the stairs in my building, which I climbed up and down countless times every day, were the culprit of my injuries and pain.
And, two years later, after settling the Workers Compensation lawsuit out of court, I was also approved for total Disability because of my tarsal coalitions, bulging discs and a little thing we call PTSD (which I won't get into here).
I had fallen in my life, but I was determined to get back up. So, from 2010 to 2012, I did everything I could to whip myself back into peak physical condition. In spite of my pain, I walked six miles every day, lifted weights, rode a stationary bicycle for 45 minutes, ate right, slept well and drank 3-5 liters of water every day.
By 2012, I had lost 95 pounds and was in the best shape of my life. I was ready to get back to work. But, unbeknownst to me, because I sued my former publisher for Workers Compensation, I was practically black-listed in the state's newspaper industry. Not even my friends from the biz would talk to me.
(Me, 2012)In 2013, I was 40 years old, hadn't worked in five years, I had no education, and because no one would talk to me, I didn't have any professional references, aside from local, state and national law enforcement officers, for an entire decade's worth of work. In spite of succeeding in the fight of my life, I had become no one special.
Realizing this and having every job application discarded without response, I sunk into a deep depression; during which I gained 60 pounds back and allowed myself to succumb to depths of mundanity. In poverty on Disability, I allowed myself to suffer. I had fallen down, but I didn't get back up.
It wasn't like I made a conscious decision to not get back up. Depression like mine is something that grows over time; sneaky and undetected, like a tapeworm. And, as my depression worsened, so did my physical condition. Numerous ailments popped up, the pain in my feet, back, neck and legs resurfaced with a vengeance.
By 2015, I had fallen so deeply into depression, I could see no way out. My medical conditions worsened and broadened. My feet also worsened, and the pain from my TC's was immeasurable.
Then, recently, in 2016, I was prescribed Levaquin and Cipro to treat an infection. Within just three days of taking the antibiotic Cipro, I couldn't get out of bed, because the pain in my tendons was so bad.
Applying my journalistic research skills, I found a medical warning from Bayer Pharmaceuticals, the manufacturer of Cipro, which reads, "Patients with pre-existing tendon issues should not take Cipro" due to a rare side effect that can result in inflamed tendons and even complete tendon rupture.
In fact, Cipro is known to cause patients with pre-existing tendon issues to be "floxed": "... the sandwiching of a DNA sequence (which is then said to be floxed) between two lox P sites"; meaning in such patients, Cipro can actually change a patient's genes, which first presents itself as an attack on the weaker tendons in the human body. And, because of my TC's, the weakest tendons in my body are the Extensor tendons, across the tops of my feet, and the Achilles tendon behind the foot, which attaches to the bottom, rear of the heel.
The result of all this is that I am writing this chapbook from the comfort of a really uncomfortable, manual wheelchair; having lost everything of value in my life, living in poverty, with unmeasurable constant pain and no guaranteed end in sight.
I'm prescribed 18 different medications, and I have a nurse who helps me bathe. My 73-year-old mother helps me by delivering groceries and doing my laundry.
It sounds awfully depressing, doesn't it? And painful, right? Well, it is, but as I said in the beginning, if we have lived with pain all our lives, how do we know much pain we're in?
I have lived this life, with these messed-up painful feet, for 43 years. They have taken me places few people have ever been. They have supported me as I experienced so much that life has to offer. As a journalist, I saw the worst a human can do to another, and I saw the best in others.
I ran fast in my Zips, caught that game-winning fielder, was so close to becoming a professional bicyclist, hiked thousands of miles in old boots, had some pretty amazing jobs, and I became somewhat famous ...
... and today, when all my cards are down, and it seems like it's prime time to stay down, I'm getting back up.
This wheelchair isn't the end of me; only the beginning of another "time of my life". Why? Because as much as it sucks to navigate a crowded apartment in this thing, when given a straight, level surface with no obstacles, I can wheel faster than I've ever walked or run before.
So, my new goal, at nearly age 44 and even more disabled, is to whip myself back into shape, conquer this depression and as many ailments as possible and someday compete in the Special Olympics in a "sport chair" made especially for me.
(This looks soo awesome)One of my favorite quotes is from the movie "Shawshank Redemption" in which Morgan Freeman says, "Either get busy livin' or get busy dyin'." Well, let's just say I'm not ready to die yet; although some days, the pain is so great that I wish for it.
Is it worth it? Well, I've felt the cold, moist nose and hot, heavy breath of a bear on my cheek, while sleeping outside in the Northern Cascades, and I lived to tell about it. Does that experience outrank the pain? I think so, but maybe that's just a romantic thought from a middle-aged nobody in a wheelchair.
You tell me.
(I lived in this photo for 6 months with no shelter, at age 21. Despite lifelong pain from tarsal coalitions, I hiked 15 miles to the top and 15 miles back down.)
