I was James Bond: bullet-proof and defined by my actions. I was fit, on the fast-track to success, got the girl, and had a couple of great looking, smart boys. I was running marathons, playing in a band into the wee hours of the morning, and had just earned a master’s degree. The future couldn’t be brighter for a brainy stud like me, right?
That’s what I thought until I collapsed one day, shortly into a run, and nearly peed my pants while lying there on the ground. I couldn’t shut off my iPod because my fingers stopped working. I had a nice raspberry on my forehead from where it hit the floor. Two girls came running over to see if I was ok – God bless ‘em. I lied and mumbled that I was fine. The truth was that I was in serious trouble, but I wasn’t ready to admit that I might not be invincible.
Like Maximus says in Gladiator: “What we do in life echoes in eternity.” As far as I was concerned, this hadn’t happened. I was immortal. I made up a story about the mark on my forehead and pretended that nothing had.
A month later, I played a St. Patrick’s Day gig with my band. On the way home, I got pulled over. Having been raised to follow the rules, I was ultra-paranoid when I saw the police officer on the side of the highway. I hit the cruise and locked the steering wheel in place. But, I didn’t move over.
He pulled me over expecting to find a drunk driver coming home from a St. Patty’s Day party, I’m sure. He gave me a full-on sobriety test on the side of the road. It was dark, cold, my balance was gone, and I was nervous. The test, if you’ve never had the pleasure, is mostly balance, walking, and “follow my flashlight with your eyes” challenges. All of my weaknesses. I have never been so humiliated in my life. The last thing he gave me was a breathalyzer, which I passed like a teetotalling Utahan, and he sent me on my way.
I lied about that, too. Wait a second. Is it a lie if you don’t tell anyone?
Then, as winter turned to spring and then summer, it got hot. Coaching my son’s tee-ball team, I found that I couldn’t even stand, let alone chase foul balls. The hotter it got, the worse I got. I had lost my super-powers. This wasn’t going away and I couldn’t run from it, so I sucked it up and went to the doctor.
Could it be a heart problem? The cardiologist put me through the ringer: an ultrasound that lasted almost an hour, a 24-hour halter monitor (a continuous EKG where you wear electrodes and keep a diary), and a stress test. All to find out that my heart is like that of a teenager (I was 37). The next referral was neurology (cue the zombies). The first step, here, is to get an MRI. That’s the big tube that you slide into and stay still or they will kill you, or the machine will, or something.
The next night, after my youngest son’s graduation ceremony at his preschool, I was cooking chicken on the grill. My oldest son came outside with the phone and said “I think it’s a doctor.” On a Friday night, that wasn’t exactly music to my ears. I answered the phone, and the doctor on the other end said “Jim, your MRI showed some abnormalities in your brain.”
When you hear news like that, you aren’t exactly rational. I, of course, tried to play it cool, and got no more information. Brilliant.
Are we talking about a brain tumor or a hemorrhage? That was what my wife and I got to think about for the next sixteen hours or so. Would I be dead in a week or in a month? Sixteen hours. That might not seem like very much time, but let me tell you, when you fear the worst, it’s an eternity.
The next day, I found a note in my health care account from my doctor. She had been unable to get through to me in person, but didn’t want to leave me hanging. I was actually relieved to find out that it wasn’t a tumor or hemorrhage. It was multiple sclerosis (MS). So what is that? We didn’t know, either. My wife and I searched the internet for information and learned that it’s a progressive, disabling disease of the central nervous system. There is no cure. Maybe I’m not relieved.
We found out that it’s a disease where your immune system attacks the cells that make the insulation, or myelin, that wraps around your nerves. What you end up with is nerve fibers in random places throughout your brain and spine that are unprotected, damaged, and short-circuiting, if they function at all.
So at least I’ve got that look forward too.
I remember that my wife checked out a book from the library and it essentially told her that life was terrible once a spouse gets the MS diagnosis. It detailed the hardships, the cognitive problems, the mobility problems, the money problems, and on and on. She started crying and didn’t finish the book. Everyone’s experience is different, but we couldn’t know that at the time. Either way, every day is spent wondering what the next day will bring.
Will I be able to walk?
Will I be able to talk?
Will I be able to make it to the bathroom?
And then there’s the kids. Those of you who are in my position understand that it’s one of the biggest fears of all. My plan was to be a superstar and give them the life that they deserve: pay for their first car, college, weddings… I get that we all live until we die, and that sooner or later it’s going to happen. It’s the sooner and being a long-term burden part that I am desperate to avoid. Are all of those dreams gone? I don’t need to sacrifice their promising lives, too.
A Glimmer of Hope
A short time after my diagnosis, I was moved into a work unit that was in a serious tail-spin. The press was involved, there were federal oversight issues, and there was a general disdain in the community. We’re talking about a major public institution, so it couldn’t be swept under the rug. I was supposed to make it all better and had the biggest of the big-wigs breathing down my neck. By the time I knew which way was up, I realized that I had been feeling better. This whole not feeling sorry for myself and having focus was clearly doing some good. So I must be able to influence how I feel, right?
That was a serious wake-up call. My choices, as I saw them, were to sit, be a slave to the drug companies, and hope that someone fixes me (winning the lottery had better odds), or to figure out what I could do to make the best of it. Well, I didn’t see raising the white flag as an option, so I decided I would use the things that I knew, and knew well, to start improving my life. I had a Master of Science degree and was an exercise and nutrition fanatic, so the starting point seemed fairly obvious.
I decided that one thing I would never say is “why me.” Why NOT me? Why should it be you or anyone else? Life isn’t fair and I knew that going in. None of our lives are the same, diseased or not. We all have our problems. So I wasn’t feeling sorry for myself, right?
Well, I didn’t exactly take it like a champ. I will shamefully admit that I spent a lot of time, especially during those first couple of months, wandering around aimlessly, crying, and thinking about the legacy, not to mention the financial burden that I was leaving my boys. But, I always knew that if beating this thing was an option, I was the man for the job. It would be work, but if anyone could do it, I could. I was in superhero shape before this started, I have a strong education and interest in being my own science experiment, and I have a loving family.
That was six years ago and despite being told by one of my physicians that I “seem to have a pretty aggressive case,” I’m feeling pretty darn good and am still completely independent and mobile. That may not seem like a lot to some, but as a former long-distance runner who has purchased and needed three canes, two walking sticks, and a “disabled” parking permit in the last couple of years, trust me, it’s huge.
So, what did I do? I started with the things I knew. I’ve been a nutrition nerd for most of my life and started there. I totally eliminated the things that had been proven to be bad, or that I knew I should avoid based on the research. I kept meticulous notes about the other things that made me feel better when I ate them and about the things that made me feel worse. This was working, and I was seeing improvement (or, at least, slower regression). The thing is, it all snowballs. When you make a change and see an improvement, you’re motivated to try something else.
I did notice that these weren’t “one and done” solutions. It was clear that things were quickly changing and I’d have to continue making adjustments based on my experience, the science, and my own conclusions. The key is self-awareness, and we’re not talking about checking to see if your fly is down. If I can see differences in my health, energy level, balance, speech, etc., I can make adjustments. If I document well enough, I know which adjustments to make. Eliminate the variables. Now there’s a prescription that I can afford!
The next step was exercise. This was a little daunting because needing a wheelchair seemed inevitable. I was rapidly losing strength in my legs and I couldn’t do anything that would raise my body temperature. After some trial, but mostly error, I found that when I heated up I became a zombie. Not cool when you’re at work or otherwise trying to be productive, or a dad.
And then there was the fatigue issue. How is it possible to work out 1) without being so miserable that I’m not going to keep it up? 2) using the exercises that the research shows makes big differences in wellness and recovery? 3) and still be functional during the day (leg work, for example, left me essentially useless)?
After a lot of reading about different methods, anecdotal success stories, and even more trial-and-error, I came up with a system that works. It exercises all of the necessary areas and minimizes the negative impact it has on me during the day. The good far outweighs the bad. I decided I wouldn’t let the perfect be the enemy of the good.
So I got that dialed in. I was sure that I had it all figured out, but after some early success and focusing on the things I knew, I kind-of plateaued. It was clear that making a super-hero recovery was going to take more than just adjustments to my diet and exercise. Don’t get me wrong, here. I had improved my life considerably. I wasn’t to the point of leaping tall buildings in a single bound, but I was feeling pretty awesome. Well, relatively awesome.
This made it extremely clear to me. Feeling great or not isn’t a light switch. It’s a continuum. Imagine getting a 10-minute massage. Feels fantastic. Now imagine being 10-minutes into a 1-hour massage. What’s better than fantastic? Fantasticker?
It’s all relative. It didn’t matter what I could do compared to the 16-year old me. What mattered is what I could do or how I felt relative to yesterday. A little better is still better. It’s about change.
OK, so I wasn’t exactly ready-for-primetime. That said, I could see some real changes. If you’re like me, you know that feeling 10% better than you did yesterday is enormous. Feeling 20% better is a dream. Now I started to wonder if I could consistently feel 50% better or more.
Back to science (and pseudo-science)
I’m not going to lie, not everything I read and tried came from reputable science journals. Much of my knowledge came from books and seminars by respectable individuals, but they didn’t always have the scientific process in their corner. There were also anecdotal accounts of recovery by hoards of people. I wasn’t going to disregard everything they said and did just because they didn’t have the statistics to back it up. I felt certain that lifestyle changes and eliminating variables from our lives was something that was key to good health and recovery no matter what the issue, and that there wasn’t a drug that was going to do that.
Now, much of my knowledge did come from scientific journals. The difference was that they tended to focus on one particular intervention, for example, meditation, and one particular health condition, for example, heart disease. I just extrapolated the information and combined it with what I knew and a number of other articles until I felt comfortable that it had merit.
Oh, and it was all good for you, anyway. I knew that I could only gain from the process. Even if I’m bed-ridden, I’ll live longer than everyone else!
The Big Reveal
But it worked. I have made some serious lifestyle changes and can assure you that they are not sacrifices. I’ll take the way I feel over what’s “fair” or “because I deserve it” any day. I have often said that I’m not sure that I would trade the experience. I’m not the physical dynamo that I used to be, but I’m much happier and pretty healthy. Being super-human is overrated, anyway. I appreciate the little things much more than I used to and I don’t sweat the small stuff. I live my life the right way.
I can feel the difference every day. It’s amazing. As Jerry Seinfeld would say, “it’s a surfboard on a rainbow.” I walk differently (usually, sans cane!) and talk differently. I feel better and I have more confidence when I talk to colleagues, friends, and family, and I can go about my daily life.
So, I’ve conquered it. The future remains to be seen but I can honestly say that, despite being occasionally pelted with Kryptonite, things are much better than they were yesterday, and tomorrow holds even more promise. Life is good.