In my mom’s words

Tomorrow I run my final miles of my MS Run the US segment, 22 or so miles from Jean to Las Vegas. My mother was diagnosed with MS 10 years ago, and she is the reason I joined the Relay. She has been with me every step of the way. But tomorrow’s segment is specifically in honor my mom. I will wear her name on my back all day as I run and walk.

A while ago I asked if she would write a blog post and she agreed. I’ve waited until today to post it. It seemed like the right time, on the day I run for her. I love you mom. I draw strength from you and watching how hard you fight and I am honored to have been able to do this for you. We’ll always be a team.

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I’m Jay’s mom, Annie.

Herniated discs run in my family. Multiple sclerosis does not.

After I had an MRI to confirm a diagnosis of a herniated cervical disc, several lesions were also “incidentally” found in my spinal fluid. An MRI of my brain revealed a large number of lesions. Other tests followed that confirmed the diagnosis. The lesions seemed like foreign invaders to me. They still seem like that—uninvited and unwelcome.

I don’t remember having many symptoms of MS at the time. But I was struggling with multiple cervical and lumbar disc herniations that were impinging on my spine. In retrospect, I probably attributed the MS symptoms of pain, numbness, tingling and falling to the disc issues.

When I was diagnosed with MS, I only knew one person who had that disease and she was losing her ability to walk, to talk, to think clearly. In my world, she was losing everything. I soon learned that I was very fortunate. I had the relapsing/remitting form of MS—a much milder form of the disease.

The doctor started me on an injectable drug therapy and some oral medications to combat stiffness in my limbs. My adventure with the world of MS began.

The first MS drug was extremely difficult to tolerate. It made me very nauseated and tired. My white blood count plummeted. I was constantly sick and couldn’t work. At one point, I was sent to a hematologist because they suspected I had leukemia. I had horrible nose bleeds. After I suggested changing the drug several times, the doctor finally agreed. My white blood count returned to normal and the nose bleeds stopped.

I started a new drug. There were virtually no side effects. But I had a terrible relapse. When I was driving down the expressway, the vision in my right eye began to fade. My legs were very weak. I was terrified. I was hospitalized and put on IV steroids. Eventually, my vision returned in my right eye and I regained the strength in my legs. But I gained a lot of weight and was plagued by fatigue. I felt defeated.

I finally realized I had to change my life. I could have a good life with MS but it wouldn’t be the same life I had before MS.

My career had to change. A hard-driving, 70-hour a week sales management job was over. I entered the non-profit arena and pursued communications/public relations. I had to lower my level of stress.

I found an integrative medicine physician who diagnosed a number of food allergies including gluten, garlic and dairy. I knew I had food allergies years before but ignored the doctor’s advice. Now I listened and changed my entire diet.

I took charge of my health care. I need a team of doctors who are willing to collaborate with me—listen to my ideas, thoughts and suggestions. My internist and ophthalmologist are outstanding. I have had four neurologists and am holding auditions for the fifth. Collaboration is a challenge for this group.

Relapse prevention is key. In my ten years with MS, I have had 4 relapses. I had three of those relapses at one job due to extreme stress. Everyone in that particular function was under that stress but I was the only one with MS. I resigned without another job and was unemployed for almost a year. To this day, that employer doesn’t know the reason why I left.

By far, my greatest challenge with MS is employment. I never tell an employer or anyone I work with that I have MS. It doesn’t help and, the one time I did tell an employer, it really made the situation worse. Professionally, I live in the closet which is not where I prefer to live.

Attitude is everything. This disease doesn’t affect my day-to-day life. I can go months without thinking about it. I have not had a relapse for three years and I don’t intend to ever have one again. I know my relapse triggers—extreme stress and heat especially high humidity. I have a healthy respect for this disease but it will never defeat me.

I was once a very ambitious corporate senior manager with a very promising career. MS has made me a kinder, gentler person who loves her writing career and is not so driven.

My greatest strength is my family. They have walked with me through my darkest hours and have helped me get to the other side. What can you say about a son who would run 7 marathons in 7 days? I am humbled and I am proud beyond words.

I also want to thank the many people who have donated and supported us.

Day 2

Yesterday started with months of pent-up excitement unleashed in a single moment as I kissed my wife and daughter and ran under the official MS Run the US Relay START banner, my journey towards Las Vegas finally underway. I rode a high all day. And the weather was gorgeous.

Today Ashley dropped me off by the mailbox where we stopped yesterday, basically in the middle of nowhere, and I unceremoniously started walking. There was a distinct haze settled on the horizon. Mountains that I could see yesterday clearly were barely discernible today. The wind was whipping and kicking up sand everywhere. This cast an eerie, almost somber glow over everything. The brightness of yesterday’s sky was absent. Today was not to be like yesterday.

And I just kept moving forward. That was the theme today. No surprise military bases. No reclining chairs or other interesting oddities as there were along yesterday’s route. I spent the entire day on one road: National Trails Highway, aka Route 66. Not a single turn. The monotony of the desert has a very odd effect on one’s perception. You cannot even see yourself moving forward. My immediate surroundings were unchanging. It was only after miles traveled that I would look up and see distant objects like mountains revealing that I was making progress. Life can often feel that way, like we’re standing still. But it’s just a matter of perspective. Always keep putting one foot in front of the other and you are making progress, even if you can’t see it.

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My back is holding up. There is some pain, but it’s doing pretty well considering. And the heat, which had been a major concern, has not been a problem thus far. Apparently I deal with heat better than I did when I was younger. Plus I’m moving fairly slowly and the last two days have had an amazing breeze. I’m also using armcoolers given to me by Recofit (www.recofit.co). I was very skeptical. I don’t like gear. But they are working really well, keeping my arms cool and protected from the sun.

There were two surprises today. The first was when Ashley told me there was a Dairy Queen about a mile past where I was finishing the day. I love a good Blizzard. That was a most welcome treat. Then there was a less welcome surprise when I took off my shoes: the hot spots I’d been feeling were all now blisters. Plus another I hadn’t even felt. 4 blisters. I’ve had about that many blisters total in my whole running career prior to today. Heat and sand are not my friends this week. But we keep moving forward.

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Today I ran for Sue Neal, a friend of a friend who was recently diagnosed with MS. Today was Sue’s birthday. Happy Birthday Sue! And stay strong. We’re out here running for you and everyone with MS.

Day 1

Today I began my 7 marathon in 7 day segment of the MS Run the US Relay. I woke up at 5am to a beautiful pre-sunrise glow in the clear desert sky. It felt like a good omen to me.

Pre-dawn sun over the desert outside of Barstow, CA

Pre-dawn sun over the desert outside of Barstow, CA

I hugged and kissed my wife and daughter and started to run under the MS Run the US Start Banner on the exact spot where Chellie finished her segment two days prior. I was off! The journey was begun! Whoa. I stopped fast. At the last minute I saw the cars that I was about to run in front of in my excitement. That was close. And I was off again! Whoops. My phone bounced out of my pocket bounced on the ground and slid loudly across the asphalt in the middle of the road. I turned and went back for it. 50 feet into 182 miles this was not going well.

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Fortunately despite the inauspicious start, the day went as well as I could ever have hoped. I switched off walking and running through the surprisingly hilly Barstow streets, feeling good, enjoying the glow of the low-lying sun and just settling into an easy, sustainable pace for what I knew would be a long day. Ashley, MS Run the US Founder and Relay Director/Organizer, met me at what was to be my only turn of the entire day. That behind me I had about 22 miles of straight road to go. Or so I thought.

I came under a bridge and saw the official MS Run the US car waiting, Ashley standing beside. As I ran up she said, “There’s a military base, we can’t go through.” What??? It was nowhere on the map. Thanks Google! Yet again I was stopped. A glance at my watch showed a mere 5.75 miles covered. Ashley showed me our alternative: backtrack in the car and then apply the mileage I’d run to a different road. “That just sucks,” I thought. I like the purity of covering all the miles by foot in one steady progression. But as I thought throughout the day “You have to play the hand you’re dealt.” No one asks for MS, but if that’s the hand you’re dealt, what can you do but play it as well as you can? After a look at the map, I saw clearly that we had no other options. Even for me to run cross-country to the other road I needed to be on would require crossing a river and an interstate. I asked Ashley to confirm with the Marine guard that this other road, once we finally got there, would actually go through since there were numerous bases around. When she returned she asked me, “Are you up for an adventure?” Isn’t that what this whole Relay is?!? I knew what she was getting at. And I liked it. Good thing she has a trailrunner on this segment I thought. I was more than happy to get off of the asphalt. She pointed to a dirt road, right past a sign that said “Government Property. NO TRESPASSING ” The guard had told her I could head back on that road, cross the train tracks and then follow “Golf Course Road.” Don’t look for it. The guard assured us that it’s not on the map. And now that I’ve been back there I can assure you that I was WAY off the map. I think I told Ashley that this was “Awesome.” We high-fived and I giddily ran past the No Trespassing sign, over the tracks and into…?

Once I got back there I saw two “roads.” Both had very intimidating No Trespassing signs at their entrance. It was one week to the day after the Boston bombings. I was running behind a military base and I was wearing a very odd looking vest with two bottles of liquid on the front. So, yeah the guard at the front gate told me this was totally cool, I swear. Was I supposed to tell them that AFTER they shot me? I kept headed away from the base on a non-tresspassy looking dirt “road.” Then I saw truck tracks in the sand. I guess this is the “road” I’m supposed to take. This was not a road by ANY definition of the word. It was loose sand that I assume the Marines drive around to have fun. So, I ran. Running through deep sand is really, really hard work if you’ve never done it. But it was gorgeous back there. And very peaceful. I loved it despite all of the extra energy expenditure. I just kept trekking through the desert, vaguely heading east with somehow no concern about finding Ashley. After about 2.75 miles I stumbled onto what I realize WAS “golf course road.” It was a nicely packed dirt road. Oh well. What I did was more fun. Ashley was waiting right at the end of this road. Perfect.

The "road" behind the base

The “road” behind the base

After dumping about a gallon of sand out of each shoe, I headed back down Route 66, 17 or so miles to go. From there everything went smoothly. I just kept moving down the road, seeing Ashley every once in a while and enjoying the various oddities along Route 66. Why is there a recliner in this big dirt field? Am I supposed to take a rest? Nah.

Why?

Why?

The famous Bagdad Cafe

The famous Bagdad Cafe

The slowly changing perspective of the mountains was a bit mesmerizing. Over my left shoulder I could see that the mountains that had been in front of me were now fading behind me and the dark mountains to the right, that had seemed so distant were right now right next to me. And way off in the distance I could see much bigger mountains. I’m pretty sure that’s where we’re going. Wow. Watching these huge objects come and go, so slowly and yet perceptibly was an amazing confirmation that, though moving slowly, I was moving forward inexorably. And I think that’s what any journey is, that’s what life is: just continuing to move forward. Somewhere, way past those high mountains is Las Vegas. And slowly but inevitably, I’ll get there.

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Each day I will run in honor of someone. Today’s 26.2 was in honor of Becky Blyth, a good friend from Chicago who was recently diagnosed with MS. I also thought of my mom and the 2.1 million others living with and fighting this awful disease. A cure is the goal and slowly, but certainly, we’ll get there.

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On the one week anniversary of the bombing, I could not but think of those in Boston and around the country affected by the tragedy. I know many events were planned today in honor of Boston. I ran for MS, but I was still happy to run 26.2 on 4/22. I ran with Boston in my heart too. I was doing good in the world and moving forward, and I think that’s very important.

Enjoying a celebratory beer at the end of the day.

Enjoying a celebratory beer at the end of the day.

Not if, but How

If you really want to do something, you’ll find a way. If you don’t, you’ll find an excuse. – Jim Rohn

This blog post has been a long time coming. It’s been really hard to put this out there for reasons that will be abundantly clear. So, here’s where my journey’s taken me over the last few months.

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When I was selected to join the MS Run the US Relay I had grand plans. It was truly the kind of perfect opportunity that life rarely, if ever, offers. When I thought about it, I could feel a surge of adrenaline pump through me. My mind spun with the possibilities, all of the amazing things I was going to do. Not only was I going to run my segment, I was going to run it with style. I was going to kick this thing in the ass! 7 marathons in 7 days. Could I do them all under 3:30? All under 8:30 min/mile? 8:00? 7:30? I joined the Relay for the cause and for my mom, but my ego quickly hopped on board too. I can’t deny that a part of my savored the attention this was sure to garner, the spectacle of it all. I liked being a part of something so over-the-top.

But it seems the fates had other plans for me. In my first blog post I wrote of the MS Relay that it would be the hardest thing I had ever done both physically and mentally. I was far more right than I knew. But not for the reasons I thought. A few weeks after joining the Relay I woke up one morning to find my entire upper back was pretty much frozen. I could barely move my head. It wasn’t that painful, but clearly something was very wrong. It was Saturday. No doctor or chiropractor was open. The schedule called for a 20 miler. So, I did what any good runner would do: I went running. As a concession to reason and common sense I took a phone and vowed to call my wife to pick me up if it got bad. 20 miles passed without me feeling the need to bail. The next day I did 13 miles. My back didn’t feel great, but I let my drive overpower my judgment. By Monday I couldn’t run 20 feet without significant pain. This was bad. A chiropractor convinced me not to run for a while. On Thursday I tried again, only to find myself walking back to the car after a mile and a half.

I felt defeated. That surge of adrenaline that I had felt was being replaced by a slow churning fear in the depths of my gut. I didn’t want to think about what this meant, but I couldn’t avoid it. Was this once-in-a-lifetime opportunity evaporating before my eyes? Was my Relay journey already over? My segment was three months away, not long at all given the training I had planned. I couldn’t afford to take much time off if I was to be ready for a 182 mile week, more than double my previous high mileage week. I spent a week just feeling sorry for myself. Resting and hoping to magically feel better.

Eventually I called Ashley, MS Run the US founder and the organizer of the Relay, to tell her what was going on. She is a great listener and her age belies a surprisingly deep wisdom. I told her that I felt “dishonest” continuing to ask for money. And she agreed that I should hold off with fund-raising for a while and see where this injury was going. But over the next few days, our talk was ever-present in my mind. Why did I feel dishonest? After a lot of time and reflection, I finally had to admit the real answer to myself: I had doubts about the Relay and about my back. Serious doubts. My mom has had three spinal surgeries. Was this it? Was this the beginning of the end for me? There was a part of me that had spun some very dark tales. I wasn’t at all sure that I could do the Relay anymore. A part of me wondered if I’d ever even run again.

Around the same time, another member of the Relay was diagnosed with a stress fracture. No running for 6 weeks. Ouch! But her reaction was the opposite of mine. She said “well, I guess this will give me more time to focus on fund-raising.” How could she be so positive about her injury when all I could do was be angry at my situation, scared for my future and feel sorry for myself? But it made me stop and think. She planned to cross-train and stay fit until she could run again.. I had been so focused on what I couldn’t do. But I needed to be focusing on what I COULD do. Certainly I could do something. I could ride a stationary recumbent bike. So, I went to the gym that day and rode for an hour. As I sat there sweating and pushing those pedals round and round in little circles, I thought. I thought about why I was doing this Relay. For my mom. And for everyone living with MS. For all of those people who’ve come up and shared with me their stories of how MS has affected their lives and the lives of those they love. Those living with MS can’t just choose to wake up without it one day. They can’t just walk away. But I could. I could walk away. I could quit. I could give in to the doubt and the darkness and concede defeat. But what would it mean to those who wake up every morning and fight because they have no other choice? I was supposed to be fighting for them, pushing my body to do a marathon everyday as a symbol of what they do everyday. No. I could not even consider quitting. The question was not IF I would do this Relay, it had to become HOW I would do it.

And I finally fully realized that this Relay wasn’t about me at all. This had nothing to do with my personal ambitions. This was about working for others. This was about setting aside ME for once. Apparently the universe wanted to make sure I got that message loud and clear. And right there my mind did a 180.

Over the following weeks I spent a lot of time on that recumbent bike. And I started hiking the steepest trail in Boulder, Fern Canyon…and I hiked it a lot (8 times in 15 days at one point). It’s 2700 vertical feet in less than 3 miles. Hiking that trail fast was as good a work out as running, maybe better. And I started walking everywhere. To work and back, 5 miles each way. 20 miles on the weekend. I was running again: little bits here and there. But I simply didn’t have time to ramp my running back up to the volume needed to run 182 miles in a week. And quitting was not an option. Maybe I could run some of the 182 miles, but I wasn’t going to run them all. Again, it was time to set aside my personal ambitions, my ego and my pride. This was about getting it done for others. Sometimes we must focus on what exactly our goal is with extreme clarity. To finish. That was the only goal. Everything beyond that was just my ego talking.

This has proven to be incredibly difficult. I hate the gym. I find no joy in sitting on a bike that doesn’t move, staring through a pane of glass at swimmers doing laps in a pool, breathing hot, sweaty, stale air. It’s awful. As for walking? It’s fine, far better than that bike. But it doesn’t feed me the way running does. The endorphins are lacking, the feeling of wind on my cheeks, the steady rhythm of my footfalls, heart and breathing. It’s not the same. The training for this Relay has not been fun. It’s been hard. Far harder than running those many miles would have been. Or at least very, very different. But perhaps that’s apropos. Living with MS isn’t easy. Waking up in pain isn’t fun. Struggling to walk or see isn’t fun. Each day that I trained I was reminded that this is not about me. It never was. Apparently that was the lesson I was meant to learn through this journey. It was always clear to me that this Relay would be transformative, but I could never have guessed how. I suppose if life simply taught us the lessons we wanted to learn, we wouldn’t really be able to grow.

And so tomorrow I leave for Barstow, CA, a small, unglamorous town in the middle of the desert that I’d never heard of. There I’ll start my segment of the MS Run the US Relay. I imagine it will be a pretty nonchalant affair. No screaming, cheering hoards of adoring fans. No one asking for my autograph. No starting gun. Just me and Ashley and my wife and daughter. And my will to do this. I honestly have no idea what my Relay segment is going to look like. I don’t know what my body can give at this point. Though better, my back is far from healed. I’m going to cover the miles. That’s all I know. It won’t be sexy. It won’t be glamorous. And it definitely won’t be pretty. But the ugliest finish is better than the prettiest DNF. I’ll invoke an old ultra-running adage: “Run. When you can’t run, walk. When you can’t walk, crawl. And when you can’t crawl…do it anyway.” After all isn’t that what life is? Just moving forward at all costs?

I will be only a vehicle. My Relay segment will be about my mom…and Becky…and Sue…and Terri…and Bill…and Michelle…and Jill. It will be about all the people who’ve told me their stories, who’ve come up to me and shared how MS has touched their own lives. And about their brothers and sisters and friends who’ve suffered and who’ve died.

I will run and walk for those who can no longer run and walk due to this terrible disease. I will move forward always and move us a tiny bit closer to a cure.