Copyright C 2013 by Jon Chandonnet

ALL RIGHTS RESERVED. No part of this book may be reproduced or transmitted in any form by any means, electronic or mechanical, including photocopying and recording, or by any information storage and retrieval system, except as may be expressly permitted in writing from the publisher. Requests for permission should be addressed to Vibrant Living Press, Attn: Rights and Permissions Department, (rights@vibrantlivingpress.com)

Text and Layout Design: Worthy Marketing Group

Cover Design: Worthy Marketing Group

LCCN: 2013911179

ISBN 978-0-615-83656-0

ISBN: 9780615909400

Printed in the United States of America

TABLE OF CONTENTS

PART I OPENING

1 The Beginning

2 Hiding Behind the Woodpile

3 Go with Sapient

PART II BASE CAMP

4 Moving to the Edge on the West Coast

5 Feed the Machine

6 Run, Run … as Fast as You Can

7 A Texas Prison and a Game-Changing Haircut

PART III THE CLIMB

8 MS Chaperones A First Date

9 A Moment of Clarity at Coyote Flats

10 Facing Terror in Texas

11 A Sweet Release

12 Figure it Out

13 Looking into the Mirror

14 Discovering the Outer Limits

PART IV THE FALL

15 My Engagement … to MS

16 Breaking Point: Playing the MS Card

17 Crashing the Threshold

18 A Friendly” Family Intervention

19 Nail in The Coffin

PART V RECOVERY

20 Moving Toward Optimum Health

21 Seriously? A Conversation with MS

22 The Healing Garden

23 Going Deeper

24 Even Deeper

25 Changing my Environment Inside and Out

26 Taking the Biggest Risk

PART VI REBIRTH

27 Return Home

28 Returning to Work

29 Preparing for Fatherhood

30 Rebirth

31 Root Causes

32 Building More Strength

33 The Long Good-bye

A note to the reader:

My relationship with multiple sclerosis began with denial: running marathons, climbing mountains, and working eighty-hour weeks. Living with MS, I have experienced sorrows and, more importantly, great joys, like having a child and deepening my connection with my wife, my family, my friends, and myself. MS re-created who I am and what I want.

I do not have a medical degree or training. Though I share insights about my healing, this book is not a roadmap to recovery. I just want to tell my story about coming to terms with a disease that many people consider a death sentence. MS changed my life in ways I could have never imagined and in ways that have made my life better. I hope my story offers inspiration and hope.

Jon Chandonnet

Santa Monica, California

All truths are easy to understand once they are discovered; the point is to discover them.

- Galileo

PART I

OPENING

1

THE BEGINNING

I stood above the free throw line and helplessly watched the ball sail toward my opponent. He caught it and made a strong move to the basket. I threw my body in front of him, but my defense wasn’t pretty.

My left leg, usually quick to react, was rooted to the floor like a tree stump. My calf and quad muscles locked, ignoring the command to act. My left arm was equally unresponsive. I wanted to put my hand in front of the ball and follow my opponent, but no matter how much I tried, I couldn’t get my arm where it needed to be. It lacked its usual strength and agility. It flailed in front of me rather than extending deftly above my head to reach for the ball. When I sparred in Tae Kwan Do, I could put my foot or fist in my opponent’s chest before he knew what hit him. Now I was the one taken by surprise.

I was in the midst of one of those nightmares where I stood paralyzed, unable to flee an attacker, except I was wide-awake in the middle of a basketball game. It took all my strength and focus to lunge with my right leg and drag my left into my opponent’s path. My mind knew where my left arm and leg needed to be, but my body wasn’t getting the message. I knew my jerky, awkward movements caught the attention of my teammates, and I became self-conscious.

Not surprisingly, the other team scored.

I turned and hurried down the court; my body jack-knifed, herky-jerky as I ran. When I finally made it to the other end of the floor, I tried to get into the offensive flow. I set a pick, but my left side wasn’t cooperating. I thought I might have pulled a muscle, but this feeling—whatever it was—was different than anything I’d ever felt before, and I was starting to freak out. I raised my right arm, the good one, and called for a substitute. I told everyone, including myself, I had pulled a muscle. I wanted to save face and didn’t want to let my teammates down.

I walked to the bench and took a seat. When I caught my breath, I sat on the floor and massaged my left leg and vigorously shook my left arm to see if I could get a response. I knew it was just an intramural game and not the NBA finals, so I told my teammates I was out for the rest of the half. At halftime I took Matt, the team captain and my best buddy, aside and tried to explain.

“Dude, I think I pulled a muscle on my left side. It’s my leg or back; I’m not sure. I don’t think I should play the second half.”

“No problem, the team will cover for you.”

I was thankful he was so cool and sat on the bench for the rest of the game, rooting our team to victory. When it was over, I went home and stretched my leg again, but it didn’t help. Though I had a limp, I was able to ride my bike to MIT every day to attend class and work on my thesis. I also continued my twice-weekly Tae Kwan Do workouts as well, but only worked out on the heavy bag because my left leg and arm didn’t have the responsiveness needed to land accurate punches and kicks.

Over a week and a half had passed since the night on the basketball court, and it seemed strange there was still lack of strength and responsiveness on my left side. Though I couldn’t attend formal Tae Kwan Do class, my symptoms didn’t prevent me from working out or going to school, so I looked past them. I was a young, naïve guy who thought I was invincible. I refused to let a pulled muscle slow me down.

After another week, my arm and leg regained some responsiveness but hadn’t returned to normal, so I called the student health center, got the name of an internist, Dr. Heller, and scheduled an appointment. I had waited more than two weeks to make the appointment because I convinced myself I was too busy; and I didn’t want to be inconvenienced if the result meant I’d have to endure a special regimen for treatment.

The previous year, I visited the medical center to receive treatment for optic neuritis, a condition where the myelin sheath surrounding my right eye’s optic nerve unraveled. I realized something was wrong while I was studying for my first-semester statistics final. I couldn’t focus—it was like looking through a pane of cracked glass as I read; words were jumbled and blurry. I worried my vision problems might be something major, but rather than engage my fear and anxiety, I ignored the symptoms.

I studied even more to compensate for the time I was losing because of my damaged eyesight. I hoped it would pass. I was too young to have a major health problem. I didn’t tell my statistics professor because I didn’t want him to think I wanted an excuse to get out of the exam. I was the last person to turn in my test, but I finished.

After finals, I returned home to Philadelphia to celebrate Christmas and New Year’s. I had a family friend, a prominent ophthalmologist in the area, diagnose me. The treatment was a week of daily, hour-long, intravenous steroid infusions that I took during my first week back at school during winter break at MIT—involving six weeks of independent study. Fortunately, my eyesight returned to normal before my spring-semester classes began, and I forgot about my troubles. I hoped we would be able to treat my arm and leg problems just as easily, and that those, too, would just disappear.

I told Dr. Heller about the night on the basketball court and my history with optic neuritis. He tested my reflexes and asked for more details about my health history: mono at sixteen and a bout with phantom fatigue at nineteen. He tested my balance, strength, and coordination, and seeing I was in good shape, couldn’t determine anything wrong. He recommended I see Dr. Book, a neurologist on staff, just to be sure. Now we were getting somewhere. I hoped the specialist would put this phantom muscle pull to rest.

Dr. Book looked me over thoroughly and performed the same balance, coordination, and strength exercises that Dr. Heller had done. Although the stiffness in my leg and the lack of responsiveness had dissipated somewhat, Dr. Book recommended an MRI of my brain to rule out a neurological issue. The first available appointment was in three weeks, so I took it, wanting to get back to my old life. I was on track to graduate from MIT, and I refused to let anything stop me.

I wasn’t thrilled to climb into the MRI tube, but I drifted off to sleep after the technician talked me through the procedure. After it was over, I hopped off the table and dressed for the subway ride back to campus, anxious to get back to classes. On my way out, the technician told me the results of my MRI would be ready in about two weeks. I didn’t talk to anyone, family or friends, about my health or about the brain scan. I had always been a minimalist and didn’t see the point. Less was more was my thinking at the time, though it would cost me later. I passed the time waiting for the MRI results with thesis interviews, Tae Kwan Do, and school. I tried not to brood over what my life might look like after the results. Instead, I distracted myself with a job search.

I hadn’t looked for a job before then because Matt and I had been talking about starting a company based on the independent study project we were doing to create a virtual tour of the MIT campus. We had created a rough business plan and even agreed on a name, Virtual View. I was committed to the idea but knew we had a long way to go to get the business up and running. The truth is I was thinking about a different future. After all that interaction with the medical community, I knew it was naïve to consider only one career option.

I received a lead on a job during a recent conversation with my dad. He and my mom had been out to dinner with friends while vacationing in Florida and had met another couple, Mike and Stewart Moore. Their son, Stuart, was co-CEO of a fast growing software development company, Sapient Corporation, headquartered in Cambridge at the edge of the MIT campus. My dad spoke with Mike about my accomplishments and aspirations. Mike recommended that I give his son a call to talk about career opportunities—Sapient was looking for bright, motivated young people.

I set up a time to see Stuart. As I walked across campus to Sapient’s offices, I still had a slight limp that I assumed was indiscernible because none of my classmates had asked about it. As long as I could do what I wanted and needed, the MRI results seemed like an after-thought. My body seemed to be taking care of the damage, granted it was at a slower pace than I would have liked.

Sapient’s office impressed me immediately. I suspected the choice offices at One Memorial Drive must have commanding views of the Charles River, a clear indicator of the company’s success. Dressed in my best suit and tie, I took the elevator to the fifth floor and when the door opened, I saw the Charles River through the glass walls.

I walked up to the receptionist and asked for Stuart Moore. I had never met with such an esteemed member of the corporate community and felt more than a little self-conscious, but I wore my game face and took a seat. Everyone who walked past was dressed in the same professional attire and had a similar sense of urgency and focus. While it was a more formal environment than the campus of MIT, it was equally as intense, and I felt like I was supposed to be there.

Stuart walked out of his office and invited me into the conference room, where the afternoon sun reflected brilliantly off the river. Stuart was a young guy, in his early forties, with a kind face and relaxed manner. While I knew I hadn’t yet been accepted as a member of his club, in his presence I felt like I had been given access to the kingdom.

Stuart and I spoke for the next twenty minutes about my background and professional aspirations, and he gave me an overview of the company: Sapient had been in business for six years, had grown nearly 100% each of those years and had built a strong international reputation for building trust and gaining client confidence for the custom software applications it developed. I was impressed by the company’s unique culture and signature values. Sapient sounded like a great place to begin my career.

After the interview, Stuart invited me to speak with a hiring coordinator who asked if I was interested in returning two days later to participate in a round of interviews. I walked out of the office and into the elevator. My mind was spinning.

The MRI results were ready. I walked through campus to the medial center, experiencing a slight limp as I approached Dr. Heller’s office. It seemed strange that he would give me the results since Dr. Book ordered the test. I hoped this didn’t mean there was a problem. I wanted to put all of this behind me.

“How’s the thesis going?” Dr. Heller began.

“Good. I finish the interviews today and have already started to write about the implications of the World Wide Web for local planning agencies.”

“Great,” he said. Then he picked up a folder, “I have the results of your MRI.”

He stood there and stared. I nodded, waiting for him to continue.

“Jon, the MRI shows you have multiple sclerosis.”

I was only twenty-seven. I paused and looked down to consider those two words. Multiple sclerosis. It felt like the first time I’d ever heard them. I wished it was the last time. I learned later that 400,000 Americans, roughly one out of every one thousand, has MS. I was a new member of this group, but it wasn’t one I was ready to join.

“MS. Really?” I exhaled like someone had landed a roundhouse kick to my gut.

The doctor nodded. “The MRI shows you have a couple of lesions on your brain.”

Questions flooded my mind. Multiple sclerosis. What was it? What did it mean? What should I do? As much as I wanted to know the answers, I was in shock and short on time. The last thing I wanted to do was sit there and hear more about a disease that might divert my focus and slow me down. I had to complete my thesis interviews. I hoped the doctor would give me the abridged version so I could be on my way.

“Multiple sclerosis is a condition where the immune system attacks the nervous system, so it’s an autoimmune disease. The attacked areas on the nerves are left with scar tissue, lesions, where myelin, the protective covering around the nerve, wears away.”

“Myelin?” I asked, feeling dislocated by my new reality.

“Myelin is insulation around the nerve that allows signals from the brain to travel uninterrupted to their destination. When the myelin deteriorates, signals that travel along the nerves and hit a de-myelinated area are disrupted and don’t reach their intended destination.”

I felt nauseous, afraid the doctor would say more. I wanted him to stop so I could get on with my day—thesis interviews, Tae Kwan Do practice, and homework.

“What can I do to treat it?”

“I’m not sure of treatment options, so you need to see Dr. Book.

I put on my backpack and turned to thank the doctor for his time. As I stood and stared into space, he offered some advice: “Don’t let the diagnosis rule your life, Jon. Science is moving fast to discover new treatment options all the time.”

I nodded, unsure. Before I left, he looked me in the eye one last time and offered the best protocol to follow. “Now go out and live a great life.”

I walked to the computer lab in a daze and ran into Matt before I entered.

“Hey, how ya doin’?” he said when he saw me.

I blurted out my news.

“I just found out I have multiple sclerosis.”

A look of anguish flashed across his face. “Jon … I’m so sorry.”

Matt stood to hear more, but I didn’t offer anything, and he didn’t press. I was still in shock and could not share anything more. The news was too new and too big for me to have a rational discussion about how I felt, much less about what I needed. Several hours later, I left the lab, walked downstairs to get my bike for my ride home and saw my buddy, Terry. We were pretty close, and I thought about whether or not I should tell him. The news was still fresh enough that I hadn’t decided not to tell anyone just yet.

“Do you have a minute? I have something to tell you,” I said.

“Sure.”

“I was just diagnosed with multiple sclerosis.”

When I said MS, Terry looked like I punched him in the gut.

“Wow, man, I’m so sorry. Matt told me. Are you okay, do you need anything?”

I needed to ignore his question. I needed for someone to tell me the bad dream that had started on the basketball court would end today. Terry gave me a great opportunity to discuss how I felt, but I ignored it. I needed to get to the car rental agency to drive to my afternoon thesis appointments. I needed to get on with my day—and with my life, so we said our good-byes.

As I drove to my meetings, the doctor’s advice passed through my mind: Go out and live a great life. I thought about what I knew about the disease: not much. I had a family friend with Multiple Sclerosis who lived a life of decreased mobility and was confined to a wheelchair twenty years after the diagnosis. That didn’t fit my plans. I would soon graduate with a master’s degree in City and Regional Planning from MIT, and then possibly work for our start-up or Sapient Corporation. I imagined a bright future as a leader in the exploding Internet economy, and MS was nowhere in the picture.

Then I remembered I had another family friend who, after an initial MS attack, never experienced any other symptoms. I still had contact with her family and know that after fifteen years, she continued to live symptom free. That was the future I wanted. Maybe a life free from MS was possible for me too?

When I got home after the interviews and Tae Kwan Do, I called my parents.

“Dad, there’s something I need to tell you.”

“Is everything okay?” Even over the phone, the concern in my dad’s voice was clear. It was hard talking to him, especially about something like MS. My relationship with my dad had always been practical, leaving little room for emotions.

I steadied my voice. “I have some bad news about the MRI. The doctor said I had a couple of lesions on my brain that are consistent with multiple sclerosis.”

My mom jumped on the second line and I repeated what I told my dad. The line fell silent.

I told them that I didn’t know much at this point about the next steps for treatment. I repeated the information I had just learned from Dr. Heller, the same rational way I had been trained, as a child, to deal with difficult emotional circumstances.

“MS is de-myelination of the protective covering around the nerves in my brain, like insulation on a pipe.”

Then I explained that since myelin was protective covering around the nerves, de-myelination is the wearing away of the insulation. It’s like the padding wearing away on a pipe resulting in a faulty conductor. During an MS attack, signals traveling along the nervous system hit a patch of de-myelinated nerve and don’t reach their destination.

There was an extended silence before my dad asked the next logical question. “What’s the course of treatment?”

“I don’t know. I scheduled an appointment with Dr. Book, my neurologist, on Friday.” There was another pause on the line. My dad broke the silence. “We’re coming this weekend for a visit. We’ll stay at your Aunt Sue’s in Marblehead.”

My dad’s only sister had dealt with family emergencies on short notice before. As a child, my mother had been hospitalized twice after bi-polar episodes when we lived in Vermont. Aunt Sue made the three-hour drive from Marblehead to take care of us.

“It’ll be great to see you,” I said, relieved.

“How are you feeling otherwise?” my mom asked as her voice cracked.

I could tell she was upset. I told her I’d stopped at my favorite Mexican place for dinner. I assumed this would help settle her motherly concern—let her know I was eating, taking care of myself. I told them the fine motor control in my hand and leg had improved since the basketball game because I just had a great Tae Kwon Do workout.

After I hung up, I called my brother, Pete, who lived in Boulder, Colorado. He is two years older and was always concerned about my welfare, even when we were kids.

I didn’t know how to say it so I got right to the point.

“I have some bad news.”

“What’s up?”

“I’ve been diagnosed with multiple sclerosis.”

I immediately asked if he knew what MS was.

“I’ve heard of it, but I’m not sure what it is.”

I repeated what I told my parents, slowly becoming a student of my own disease.

“How are you feeling?” he asked.

I wasn’t ready to open up, not to anyone—especially myself, but I was eager to let him know I was okay. I told him I completed my thesis interviews, rode my bike to school, and attended Tae Kwan Do. Repetition and order were holding my world together. Emotions, I believed, would only destroy it.

“Is there anything I can do for you?”

“No, Mom and Dad are coming up this weekend, and I’m building a network of doctors, but thanks. I need to go do some homework. I’ll call this weekend.”

“All right, Jon. Call if you need anything.”

Friday morning I went to my appointment with Dr. Book. I sat in his office to hear more about the diagnosis. He reiterated that it was an autoimmune disease where the immune system attacks the nervous system. I asked him the only question that really mattered to me at the time “Is there a cure?”

“No, not today, but there’s a promising new drug on the market, Betaseron, that shows signs of reducing the occurrence of episodes.”

He assured me there were many ongoing studies about the cause and treatment of the disease. Then he explained that there are three different kinds of MS. One is relapsing-remitting, marked by periods of attack then remission in which a person is often able to regain complete motor function. The others are primary-and secondary-progressive, more aggressive types that lead to gradual paralysis in the affected areas.

“Which one do I have?”

“Probably relapsing-remitting, which is marked by attacks and periods of remission where the body is able to recover. The optic neuritis last year was the first attack, and you seem to be fully recovered.”

Then the doctor said my prognosis was good because I was diagnosed young. Research showed that people who had the same characteristics as me were typically less impacted. He mentioned Betaseron again, saying it was an interferon beta drug that improved the integrity of the blood brain barrier (BBB) that has been penetrated in MS patients. He said the drug reduced the frequency of attacks by about a third, but there were side effects, such as flu-like symptoms that usually went away after the first few injections. He also mentioned I would need to be monitored for liver damage and that there might be an injection-site reaction.

“I need to give myself a shot?”

“Yes, you inject yourself every other day. What do you think?”

I wasn’t ready to change my life. The shot threatened my perfect plans.

“Are there any other treatment options?”

“Betaseron is the only drug on the market that shows efficacy at reducing attacks.”

I sat in silence while he continued.

“The course of action I recommend is to take the drug. It holds the best chance of reducing the impact of the disease on your body.”

I wasn’t convinced, based on the few facts I had gathered: doctors aren’t sure what causes MS, and they aren’t sure how to cure it; there is a drug that slows its progression, but I would need to inject it several times a week. The best news was that I probably had the least severe type of MS. I concluded it was best for me to live with the disease for a while to understand how it affected me before I took anything.

“Thanks for your time and your insights. I think I’m going to wait for now. See how it is living with it first.”

I know my reaction to the doctor’s advice was cold and probably naïve, but I was confused, angry, and in a hurry. I was defiant in my denial of the diagnosis. I wasn’t ready to give in to taking the medication and was anxious to get on with my life.

My parents arrived that weekend with a surprise. Pete had flown in from Colorado and it meant so much that he was there. That afternoon we rode out to my aunt’s place on the north shore of Boston and I told them about the drug. I didn’t mention that I would need to inject myself a few times per week to administer it because I wasn’t ready to open up discussion on whether I planned to take it.

Pete wanted to know if Betaseron was a cure. I reiterated what Dr. Book had told me and I tried to keep the conversation upbeat by sharing Dr. Book’s optimism—science was moving fast and a cure could be around the corner.

My mom then asked the question I hoped to avoid.

“Are you going to take the drug?”

“I don’t think so. I want to live with the disease so I can understand how it affects me, and I want to do some more research before I start giving myself a shot.”

My mom didn’t agree with my hesitancy; she vehemently believed I needed to take the drug. She had taken lithium for the past twenty years to manage her bi-polar disorder. I realized resistance was futile; a mother concerned about the welfare of her child would not yield, so I gave in.

“Mom, I’ll think about it.”

End of discussion. For now. As we drove through the North Shore, we passed the street where my father lived in high school. It was nice to be with family in familiar surroundings. Even though I felt comfortable, I didn’t open up. The last thing I wanted to do was engage my own negative emotions, so I hid my turmoil with upbeat small talk.

However, by Saturday afternoon, Pete and I drove out to Crane’s Beach just north of Marblehead to talk. The Crane estate, a beautiful 1920s era mansion, sat on a bluff above the beach with expansive lawns that opened to the ocean.

As we walked to the beach, I told Pete that I probably had the least severe type of MS. I assured him that because my condition had improved a lot since the episode on the basketball court, my body obviously responded well to attacks and was able to recover. There was no reason not to finish graduate school, no reason I couldn’t heal completely, like I had from the optic neuritis the year prior.

“I hope to live a great life like Dr. Heller suggested,” I said, adding that I didn’t want to slow down. I wanted to start my company with Matt or take a job with Sapient if they made an offer, earn a black belt, get married, and have a family some day.

“Those are big aspirations,” Pete said.

“That’s the plan.”

I returned to Cambridge after our weekend at my aunt’s and made good on my promise to my mom—I did more research. I read that Betaseron was recommended because it reduced the frequency of MS episodes 20-30 percent, which was significant.

I viewed my situation optimistically. I had almost completely recovered from my attack on the basketball court. I had resumed formal classes in Tae Kwon Do and could land accurate and strong punches and kicks from my left side. If I was on a path to experience an attack every third year, Betaseron might reduce that to once every four years. Then I took a less hopeful perspective. If I was on a path to experience three episodes a year, taking the drug might reduce the frequency by one attack.

Was it worth the trouble of injecting myself a few times per week, week after week for months when my body did a good job repairing the damage on its own? It didn’t seem like it.

I read more, discovering that MS could affect a person’s mobility, sense of touch, strength, sight, speech, and it could cause incontinence. I also learned MS typically didn’t impact a person’s cognitive function, which reassured me. If the other effects occurred, I could still rely on my capacity to think. At the end of the day, there were a number of ways the disease could impact me. None of them were certain, but they were all bad.

I just wanted to continue my current lifestyle, and why couldn’t I? My body seemed effective at repairing damage from an attack. I took good care of my health. I had been a vegetarian for three years. I didn’t drink much alcohol. I didn’t smoke. I rode my bike to school every day, and I worked out at least three times each week. I would not inject myself and would proceed on my path: graduate, get a good job, make a lot of money, live a great life—oh, and ignore MS.

After my long day of research, I stopped at the health food store around the corner from my apartment to pick up dinner, needing something more nutritious than a pizza. As I waited for my order, I browsed some displayed reading material on healthy living. I picked two books, one on detoxifying the body, called The Colon Health Handbook, the other titled Enzyme Nutrition. The books seemed to hold great insight on healthy living that would benefit me in light of my diagnosis so I bought them and took them home.

I read as I ate. The books made a lot of sense but seemed extreme. I would have to make significant lifestyle changes to follow the advice. Raw food? Are you kidding me? I loved food, even healthy food, but I liked it cooked. The thought of eating nothing but nuts and leafy green vegetables for the rest of my life left me depressed. I craved chili rellenos, an occasional beer, a slice of chocolate cake, cheese, and a good glass of wine.

Raw food was the last thing I considered as an alternative to taking Betaseron, or any other drug for that matter. I honored my vow of minimalism. Less is more, right? Why complicate my life with all this alternative stuff? The disease hadn’t impacted me very much, and truth be told, I didn’t want to put in all the work.

I had a great life to live and didn’t want to be inconvenienced. I closed the books and put them on a shelf where they would remain for another eight years. Little did I know that they held the key to saving my life.

2

HIDING BEHIND THE WOODPILE

I took my first vows as a five-and-a half-year-old behind the single- story, chocolate-colored home where I lived with my family in a quiet neighborhood in northwestern Vermont. My father managed the production of armaments at the General Electric plant in Burlington, and my mom stayed at home and raised Pete and me. I loved having a big brother. I was glued to his hip as we sledded down snow-covered hills in winter, dammed the streams swollen with snow melt in spring, searched the woods for salamanders in summer, and jumped in leaf piles in fall.

It was mostly an ideal existence, until one night in October, 1975, when I was five; my mom rustled my brother and me out of bed at two in the morning in the freezing cold.

“Hurry boys, hurry, they’re coming, they’re going to get us! We must go right now! The Mafia is coming! Hurry!”

As we ran past the entry closet, my mom grabbed my heavy winter jacket. I struggled with the zipper while we dashed out the door. The cold drove fear into my bones as I scurried across the sidewalk. Though only five, I knew about the Mafia from watching TV. I didn’t know much about them, but I knew enough to be scared.

“Colette, where are you going? Back in the house!” My dad yelled as he appeared at the front door.

Pete listened to my dad and followed my mom back into the house, but I bolted. I ran into the backyard. I wasn’t going to let the Mafia get me. It was pitch black, and the glow from our neighbor’s house guided me. I frantically looked for a place to hide. I scooted behind the woodpile and gasped for air.

Behind the woodpile, I buried my face in my arms and cried. My heart pounded as I struggled to regain my breath. Thoughts raced through my head. Was I safe behind the woodpile? Was the Mafia going to shoot my parents and brother dead? If the Mafia did kill them, I knew I’d be on my own.

I told myself: You need to be strong and take care of yourself to stay safe.

As I remained hidden, I heard the sound of sirens grow louder. Then I saw lights flash in the front yard and summoned the courage to peek from behind the woodpile as an ambulance pulled into our driveway. The siren lights cast shadows on the neighbors who stood in our side yard. When I saw the ambulance and the neighbors gathered, I figured it was okay to leave the safety of my hideout, so I cautiously made my way.

As I turned the corner and walked across the driveway, I heard the crackle of voices on the ambulance walkie-talkie. I walked toward the front porch and stopped, wide-eyed and incredulous as I watched two paramedics cart my mom from the house on a stretcher, while a third paramedic administered oxygen.

Was she okay? Did something happen as I ran behind the house, or did the Mafia somehow get her while I was hidden?

I stood in shock at the front door, when my dad appeared. He usually didn’t express emotion verbally. His face revealed his feelings. We referred to them as “looks” in later years. As my dad followed my mom out the front door, I grabbed his leg. I remember I felt safe clinging to him. I looked up and asked, “Dad, what’s wrong with Mom?”

My dad looked down. “Jon, I’m not sure what’s wrong, but these nice people are going to take her to the hospital and make sure she’s okay.”

I wanted to believe him. I wanted to believe that we would all be okay.

The next morning, Pete and I watched cartoons. Later, after we finished our cereal, my dad came in and joined us. He clicked off the TV and sat in his chair.

“Your mom is sick and will probably be in the hospital for a bit, but she wanted me to make sure you know she misses and loves you both very much.”

“What’s wrong with her?” Pete asked.

“The doctors aren’t sure, so they’re going to run some tests.”

“Really?” I said, full of disappointment.

My mind raced through the days ahead. I had just started kindergarten, and mom helped me get ready for school each day. I suddenly became anxious. Who would help me get dressed and make my lunch?

I heard the vow again. You need to be strong and take care of yourself to stay safe. I wanted to cry but didn’t. I concealed my fear and anger to show how strong I was.

My dad said that my Aunt Sue would arrive for a visit on Sunday afternoon to help around the house until Mom came home. I was excited to see Aunt Sue; she was stricter than my mom, but we always had fun.

Then Dad’s face turned serious.

“Boys, there’s something I need to tell you.”

Pete and I moved closer.

“It’s best you don’t talk about what happened last night,” my father said, as if he was instructing us in how to fix a leaky bike tire. This was 1975, after all, and mental health disorders were not something that anyone we knew spoke of freely. “If other people ask how your mother is, say she’s doing better and that she will probably be home in a couple of weeks.”

I turned away and stared at the empty TV screen. A couple of weeks? How long was that? It seemed like forever. I didn’t know if I had the endurance to keep all this inside me, but I would slowly learn how to become a master at keeping secrets: first my mother’s bi-polar condition, and later my own condition; they were good reasons to keep tight-lipped in the future and protect my family.

3

GO WITH SAPIENT

A week after the diagnosis, Sapient offered me a job as an assistant project manager. I was thrilled. I wanted to begin my career with a fast-growing, well-respected company and Sapient appeared to provide a rapid climb up the corporate ladder.

My future compensation would be a mix of cash and stock options. I had the potential to get rich, very rich, if the company continued to grow at the same rate it had in each of its first six years. I wanted to develop my skills and contribute to its growth. Growing rich had suddenly become very important to me. Ever since the diagnosis, I assumed an urgency to become financially independent. I had no idea how long I would be able to work—maybe two years, maybe twenty. I knew I didn’t want to rely on anyone to bail me out of my situation. This was my problem, and I would find a way to handle it on my own. Just like I handled “the Mafia” of my childhood.

I accepted the offer and called my parents to share the good news. My mom answered.

“I just received a call from Sapient, and they offered me a job as an assistant project manager in their San Francisco office,” I gushed.

“Jon, that’s wonderful, I’m so happy for you,” my mom said.

“One thing.”

“What’s that?”

“Please don’t tell anyone about the diagnosis. I don’t want people to judge me and for it to potentially impact my advancement. I don’t have any idea how the disease will impact me. There’s a chance I may never have another attack. Can you keep my secret?”

“Sure, honey,” my mom said hesitantly and passed the phone to my dad.

“Dad, Sapient offered me a job in San Francisco as an assistant project manager.”

“Great. When do you start?”

“September 1. I’ll need another couple of months to finish my thesis, and then I’ll pack my things to move west.”

The line went silent while my dad considered the gravity of what I had just shared. He usually was one or two steps ahead, but not this time. I had just been diagnosed with a serious illness and now planned to move three thousand miles away.

I knew he was happy for me, but his silence revealed a new level of concern. Right before I hung up, I repeated my request to not mention the diagnosis to anyone. “Your secret is safe,” he said, and I trusted him, knowing he had asked the same of Pete and me twenty years earlier.

The hardest part about accepting my job at Sapient was telling Matt. I didn’t want to disappoint him after everything we had already done for our start-up, Virtual View, but I knew I had to get more practical about my future in light of the diagnosis. I believed that taking a job with a more established company, even one as young as Sapient, was a more secure bet than breaking out on my own—with Matt or anyone.

I worked up the nerve to tell him one morning after a class and went to the computer lab hoping to see Matt checking email. I made my way through the row of monitors and spotted him in the back.

“Hey Man, how’s your morning?” I said in a hushed voice.

“Okay, I just reviewed the email reminder from the department about thesis dates and need to pick up the pace; how was your morning?” he whispered.

“Class was good, but I need to talk when you get a chance.”

“Sure, I’ll have a minute after I finish my mail. I’ll come get you.”

I took a seat, anxiously staring at the screen, fretting about the friendship that might unravel—all because of the MS. My stomach felt tight and I wondered if this might be the beginning of the end of my unfettered optimism. I had always been a loyal friend and, consciously or not, I regretted that the MS was making me choose otherwise.

A few minutes later, Matt tapped me on the shoulder.

“Let’s step outside,” I said.

We walked out into the hall. “Remember the Sapient interview I had the other week?” I asked, getting right to it. “They got back to me and offered me a position.”

I expected Matt to be taken aback by my latest news, but he stood there and smiled. “I’m happy for you Jon. Tell me about it,” he said as if he already knew.

When I told him about the offer and the relocation to San Francisco, he assured me that he would continue with his vision because he still fully believed in it.

“I’ve got the incorporation papers together, and I’ll file them in the next couple of weeks,” he said.

I was finally able to breathe.

“I’m really sorry that I won’t be able to work with you,” I said. “I think we make a great team, but I need something with… a little more certainty and security.”

“I get it,” Matt said and caught my eye. “You have to do what you have to do.”

PART II

BASE CAMP

4

MOVING TO THE EDGE ON THE WEST COAST

In the summer of 1997 I finished my thesis, received my diploma, and graduated from MIT. I had healed completely from the episode on the basketball court. My limp was gone, and I was in total control of my left hand and leg as evidenced by accurate punches and kicks at Tae Kwan Do. I was moving to a great city to start work at a great company. I was living my dream, and it had no room for multiple sclerosis.

Though my parents and Pete supported my decision to keep quiet about the diagnosis, I knew I was asking a lot. Later, I realized I was denying them the kind of support that might also have helped me heal. At the time, I wanted to spare myself and others the grim consequences of MS—a life of increased paralysis that progressed from the use of a cane to a walker to a wheelchair. That was not my idea of a great life. Besides, I didn’t know for sure how the disease would impact me; there was no reason not to be optimistic. Maybe I was one of the lucky ones.

When I arrived in San Francisco, I moved in with my friend Liz, a classmate from MIT, who lived in Oakland. I planned to live on her couch for a few weeks until I found a place. It was an exciting time to arrive—those were the early days of the dot-com boom, and the Bay Area was the epicenter. I was living my teenage aspirations.

In my teens, I remember waiting each summer for my dad to receive Forbes magazine’s annual list of the top-paid CEOs for the five hundred largest public companies, America’s captains of industry. After my dad finished reading it, I would take it up to my bedroom and study it. More than anything, I wanted to be on that list.

From my first day at Sapient, I was eager to work hard, build a strong reputation, and gain responsibility. I wanted to be perceived as a go-getter, hungry to take on new challenges and prove to myself that MS wasn’t going to impact me. I worked hard to exceed client and team expectations on each project. I wanted to show I was a vital team contributor who helped achieve high levels of client satisfaction.

As a result, I was offered an opportunity to lead the testing phase of a project in Los Angeles. I joined a team of young, bright, and highly motivated software developers in their twenties who worked their butts off to prove their mettle. Thirty of us were sequestered in a cramped forty-by- forty-foot room in the old Playboy call center at the west end of LA’s San Fernando Valley writing code for a start-up online insurance agency, AFI. The atmosphere was collegiate; we worked hard and played hard.

We turned the InFocus projector, used to deliver client presentations, into a movie projector on Friday nights to watch action movies on the side of the building after dark. We hung out on weekends, drinking beer at local bars, and ran touch football tournaments in an empty back parking lot during lunch.

But it wasn’t all fun and games; it was my responsibility to make sure the application we were developing was built, as designed, and that it worked—all while keeping my darkest secret from everyone, fearing it might jeopardize my success.

In the summer of 1998, the AFI application went live, and Sapient opened a Los Angeles office, leveraging the team to build its talent. Frank Schettino, the managing director of the office, approached me and offered me a position as one of the founding members of the LA staff. I jumped at the opportunity. The company’s growth strategy challenged current employees to fill open jobs from within; providing a tangible ladder to climb.

Frank and I had gone to lunch my first month on the job in San Francisco. He told me to deliver on my commitments, become an expert at what I did, and the rest would take care of itself. Though he was only a year older than me, he had been with the company for four years and had quickly risen from working the front desk to director. I knew if I watched him closely and emulated his actions, I had the opportunity to achieve the same success. If I gave work everything I had, I knew I might eventually find myself on Forbes’ captains of industry list. I was on my way to realizing my dream.

5

FEED THE MACHINE

As I worked to add new products to the AFI system, I met a guy named Kelly Harriger who wrote marketing copy for the start-up. He was ten years older and an avid hiker, climber, and mountain biker. During breaks, I would stop by his desk and excitedly share stories of my weekend rides in the Santa Monica Mountains, hoping to impress him, and he told me about new trails.

Kelly had lived in LA for eight years and had biked throughout the Santa Monica and San Gabrielle Mountains. Kelly had also hiked numerous 14,000-foot peaks in the Sierras and had rock climbed noted Southern California peaks, from the famous walls of Tahquitz to the climber’s paradise in Joshua Tree. I wanted to join his expeditions.