How I Found my Way

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Shadow Summit, Jpn Chandonnet

A memoir about finding my way.

How do you live with a disease or any other significant life challenge determined to knock you off your path? 

That’s such a personal question, and it’s not my place to profess I know “the right answer”. How a person deals with such a big question is based on their individual needs, desires, experiences, and capabilities. I can say one thing; my journey over the past seventeen years, finding my way and dealing with that exact question, has opened my eyes to what it means to live a VIBRANT life in spite of the hand I’ve been dealt.

First Inciting Incident

One night in the winter of 1997 during my final semester of graduate studies at MIT, I was playing intramural basketball when I lost fine motor control of my left hand and leg. I tried to follow the ball with my left hand, but it wouldn’t go where I wanted. When I jumped into action to guard my man, my right leg responded, but my left didn’t; it remained rooted to the floor like a tree stump.

I had no idea what was happening and tried to fight through my troubles. I willed my way up and down the court, but my body wasn’t its usual smooth responsive self. I jack-knifed herky-jerky down the court. I had been training for my black belt in Tae Kwan Do for the previous three and a half years and could put my foot or fist in my opponent’s chest before he knew what hit him. That night I was the one taken by surprise. I played for a minute or two before I called for a sub thinking maybe I pulled a muscle. It was the best way I could think of to explain what was happening; I had no clue.

I went to the bench and tried to shake and stretch my left arm and leg back to life. It was like they were asleep, but they didn’t respond. I sat out the rest of the game. I limped around campus for next two weeks until I finally saw a doctor. He said things seemed normal but suggested I see a specialist to be sure. I saw a neurologist who again couldn’t determine what was wrong. He ordered an MRI to rule out a neurological issue.

During the appointment, when I learned of the MRI result, my doctor shared the news. The films showed I had a number of lesions on my brain. I had multiple sclerosis (MS). I sat in stunned disbelief while he shared insights about the disease. Most I don’t remember. Right from the start, I tried to put the grim consequences as far from my consciousness as possible. I didn’t want to know; I didn’t want knowing to increase the likelihood of them coming true. There was one thing he did say that has stuck with to this day. As I stood to leave, he said,

 “Go out and live a great life.”

My doctor and I have maintained contact through the years. When I reached out to thank him for the way he shared what could have been very devastating and dis-empowering news, he said he didn’t remember using those exact words. He did say he thought long and hard about how to share the news with such a young, vital person. He had spent the previous couple of years giving young people, predominantly men, the diagnosis of HIV which at the time was a death sentence. MS, while not as life threatening and devastating, still had the potential to dramatically alter my perspective, and he didn’t want me to take it that way.

Up until that point in life, I had a track record for success both physically and academically. I had played varsity athletics in high school and had the opportunity to play Division III lacrosse in college but opted to attend a school with a club program instead. I wanted to maintain my athletic interest but wanted the college I attended to provide the best chance of maximizing my academic potential and to open professional doors. I attended the University of Richmond and graduated one A from academic honors. I parlayed my academic achievement, along with my strong internal drive, into an opportunity to pursue a graduate degree at the Massachusetts Institute of Technology (MIT).

I was on my way to earning my graduate degree that would allow me to capitalize on the exploding digital revolution in my final semester when I received the diagnosis. I made the decision not to internalize the news. I wasn’t ready to live with a disease that could prevent me from living the full, prosperous, and purposeful life I was meant to live, so I didn’t. I opted to live in denial and decided to roll the dice, deny the disease, and press the accelerate button on life in the hope that I could realize the “great life” I had worked so hard to achieve.

You may respond by saying, “That’s naive”, and I might agree, but my perspective wasn’t completely uninformed. I had a family friend who after an initial MS attack didn’t show any symptoms more than fifteen years later. I was a young, optimistic guy and chose the most vibrant, hopeful path I could imagine. I wasn’t ready to diverge from the path to the “great life” I had worked so hard to find.

Explode Into Life

Rather than embrace a life of fear and anxiety waiting for the disease to slow me down, I went hard in the other direction. I exploded into life. I had relapsing-remitting MS, a form of the disease that comes and goes where a person can fully recover from symptoms; that was the case for me. I completely recovered and regained full use of my left hand and leg.

Since my body was good at repairing the damage, I didn’t believe there was any reason to alter my belief system for achieving life success; it was based on having a sound mind and strong body, setting lofty goals, and willing my way to achieving them. Those beliefs had served me well since childhood; I knew no other way. Based on this perspective, I set off to create the vibrant life of my dreams.

I finished my graduate degree and started a job with Sapient Corporation, a start-up technology and software development company that has since grown and morphed into a big company. At the time, it was small but fast growing and had achieved a 100% growth rate in each of its first six years in business; the company needed employees to take on greater responsibility and develop quickly to fuel its explosive growth. I couldn’t believe my good fortune. If I worked hard and proved I could deliver the value clients needed, the opportunity had the potential to provide the professional career path and financial abundance I needed to live the life I wanted.

For the next six years, I believed the vibrant life I was entitled was based on four ideals—a sound mind, a healthy body, professional achievement, and financial abundance. Since the MS remained completely dormant, it seemed these four ideals held the key to me keeping the MS in check and enabling a full, prosperous, and purposeful life. I began to think maybe I had stumbled onto “the answer” for living a great life with MS.

Physically, I chased increasingly extreme challenges in pursuit of that great life. What began as mountain bike rides on the most challenging routes in the Santa Monica Mountains with menacing names like Bull Dog and Hell Hill, turned into the desire to climb each of the fourteen thousand foot peaks in California. It led me to reach the summits of Split Mountain; Mount Shasta, the snow capped, dormant volcano in Northern California; and Mount Whitney, the tallest peak in the Continental US as well as the summits of a couple other 14ers as they are commonly referred.

My penchant and success with extreme sports drove me to marathon running. I also completed the Malibu Triathlon, a short sprint distance course that introduced me to the competitive world of triathlon training. Professionally, I developed a reputation as a skilled software development Project Manager. I worked for Sapient Corporation in a challenging and fast-paced environment. I worked with start-up insurance agencies to launch web applications and led large automotive companies to develop enterprise applications to more effectively manage their business.

My professional achievement paid off financially. I was routinely awarded stock options in the fast growing company that reflected the results I achieved for my clients and Sapient. I was working hard, making money, and the only thing I spent money on was gear for my outdoor activities, so I was socking away savings.

Mentally things felt dialed in. I was a project manager skilled in the methodology of fixed-time fixed-priced application development. I worked with teams to identify software solutions that solved business problems and created project plans to execute on those visions. We had things down to a science; the teams I lead had better than 90% success-rate at determining the cost and launch date for the applications we envisioned.

I harnessed my mental discipline to develop marathon training plans and successfully completed two races of in less than four hours, not world class, but a solid result. I reached the summit of each 14,000 foot peak I attempted. My self confidence and hope for the future fueled me to meet and fall in love with my soul mate. Fortunate was shining big and bright.

It was at this time, roughly six years after the diagnosis that the MS awoke from its slumber, and my body began to show disease symptoms. Over the next two years the MS brought me to my knees. I lost feeling from my elbows to finger tips and knees to toes, feel down stairs, shuffled my feet like an elderly man, failed on-line tests at work I had been around long enough to teach, my voice became weak and strained, and my strength deteriorated. The four ideals fueling my great life were called into question. I was only thirty-five and two years earlier had run the Philadelphia marathon in just over four hours. I ultimately lost hope.

I didn’t wallow in that lonely, desperate place for long. I searched for a way out of the darkness. My brother turned me on to a raw vegan retreat center in San Diego—the Optimum Health Institute (OHI) where I went to see if I could turn things around. I dove into the program, detoxified my mind and body, unified my mind, body and spirit, learned a number of healing modalities, and regained my vitality. While in the healing environment of OHI, I connected with the internal truth that I could turn around my symptoms by becoming mindful of everything entering my body whether that was food, water, thoughts, or emotions. What I really found during my four-month stay was hope. Hope that I had the power to influence my condition and hope that I could find my way back to the “great life” I was meant to live.

 Second Inciting Incident

Over the last eight years, since my time at OHI, I have come to realize the inciting incident leading to the “great life” I aspire was not the diagnosis of multiple sclerosis. The inciting incident guiding my actions and being was the understanding that I have the power to change my life by changing my thoughts, actions, habits, and desires to live in harmony with my well-being. This was the key to creating the VIBRANT life I am meant to live.

Through experience and reflection, I have come to understand that there are seven principles that allow me to maintain my VIBRANT focus; they are my mind, body, spirit, emotions, professional pursuits, financial abundance, and social community that I refer to as the VIBRANTS.

If you want a better sense of my struggles and triumphs, you can read my memoir Shadow Summit. I give a very open and honest account of my journey. If you want to understand how I nurture each of the seven VIBRANTs, subscribe to my blog—jonchandonnet.com. If you want to understand how I practice each of the seven VIBRANTs in my daily life, subscribe to my Facebook Author Page—Jon Chandonnet–Author.

What do you think about my response to a challenge? What have you learned about dealing with challenges in your life?

2 comments
MaryEllenKlenckZiliak
MaryEllenKlenckZiliak

I relate to your approach of living life well with MS in it. We have chosen the same words, "life challenge." Anxious to see why our paths have crossed. I believe in the synchronicity of life.