The New Normal and the Words I Say…

This post is adapted from a toastmasters speech I delivered in 2013, this was my “Ice Breaker” speech for anyone who has been a part of toastmasters:

….This is not a play on words.

This is a reality that I get to live with every day. Over the next 5 minutes, I will touch on illness, fear of the unknown, and recovery.

Nothing is more frightening than asking questions about yourself that you don’t know the answers to.

I am going to start my story in June 2003. It’s not the beginning, but it is important. I am sitting in a waiting room to be admitted to the emergency room, I’m 24 years old, and had just endured a very painful walk from my house to the check-in at the Royal Jubilee hospital in Victoria.

A month previous, I had been dropped to the floor with painful, painful muscle spasms. They had increased in frequency and baffled every doctor that I had seen over the last month. They would guess – allergies, vitamin imbalances, even anxiety. In the end they could do nothing for me and sent me home… and told me to come back if anything changed or got worse…

So now I’m in a hospital. I had taken a number and was sitting in the chair, waiting….racked by the occasional seismic event that my body was putting me through.

The on-call nurse called my number, and I slowly walked up to the counter. Just as I was sitting down, I was hit with another violent muscle spasm.

Imagine a sneeze, starting in your left arm. Then traveling down to your fingertips, then in an instant the other direction, all the way down to your foot. And every muscle it touches pulls so hard; you could imagine each one was trying to lift a car.

A nurse was immediately beside me and I was loaded into a wheelchair to be rushed into the ER. She thought she was watching me have a heart attack. I think she told me later that she was afraid that I was going to die in front of her.

Eventually I was strapped to a gurney, plugged into a bunch of machines, and blood was pulled. They quickly found out that I wan’t having a heart attack and that I wasn’t in any mortal danger.

After what felt like five hours, they closed the curtains on me, and slowly the muscle spasms started to subside. With a note on my file, I was discharged and sent home. They couldn’t find out what was causing the spasms, only that they seemed to have calmed. And they couldn’t help me.

I felt like there was no point in going on, I felt defeated, and that got to be a cycle that I kept rolling through my mind. Imagine the frightening feeling, of knowing. There is nothing they can do for you. You’re on your own.

It took another four months, and three more doctors of increasing specialty to eventually come to the conclusion that what I have is a condition called MS or Multiple Sclerosis which at the time I knew nothing about, except that the doctor told me it was not curable, and would progress with increasing disability until…

I don’t need to detail the list of words that started flowing through my head then, but they weren’t pretty.

The various questions rolled through my head…Do I deserve this?…Is it going to get worse?… when is it going to get worse???..What now?…

The list goes on… I can say that I was almost as afraid of the possible answers…as I was about not knowing them… my mind instantly put me into the worst place it could go, and was able to push forward.

———-

Fast forward to 2010, in Penticton.

It was a cloudy day in August on a Sunday morning. I’m standing on a beach with two thousand seven hundred people who have all trained to stand with me. I’m in a wetsuit, and it is almost 7 AM.

I’m about to start Ironman Canada, which is a gruelling two hundred and forty kilometre race (140.2 Miles for those who prefer Miles). It is a pilgrimage of sorts for all types of people.

I felt unsure and confident at the same time.

The cannon fired, and with a mass of hands, and legs, and feet we all charged into the water for the four kilometre swim. Everyone was trying to pull me under in their quest to get out of the water again, just a little faster.

From the water, I emerged, not fast, but not tired, and started with the bike. One hundred eighty kilometres, riding past four lakes, over three mountains, through a hail storm, in the rain, and a nasty headwind all to get back to the start… Again, slower, more tired, but moving forward.

On to the run. Forty two kilometres starting in a light rain. Changing into a warm sun, I ran. My sun screen had washed off on the ride, but I was not noticing that. I ran… for two and a quarter hours I ran, and was half way through. On the way back I gained speed, as I saw my friends running past and people cheering along the course.

I heard news that one of my training partners was just ahead, so I pushed on. With 10 kilometres left I caught up to my friend, and executed a clumsy attempt at a high five. I kept on running, with five kilometres left in the race. I was working harder than I had worked all day.

In my mind, I was a Kenyan marathon champion, but I was also dreaming about pizza at the finish line.

The finish line came soon enough, and it was all over for the day. My finish time was twelve hours and thirty three minutes and fifty eight seconds.

The seconds count…and the pizza…not so good, but it did not matter. It had done its job.

I made it, I believed I would make it, and I had every reason to believe I would make it.

The Ironman has been referred to as a lot of work; to get to a place only 100 feet from where you started.

It has been thirteen years now since my diagnosis. MS kept me afraid; afraid of disability, afraid of failing….afraid of the unknown…and I still don’t know.

But I have learned one thing, if anything… The words I say make the difference, they make the only difference between getting out of bed in the morning, and getting out the door.

I am going to fail, over and over, and I’ll do it better every time I do. I have to be nice to myself, and forgive my failures, so that I feel strong enough to get up and do it again.

The Questions don’t matter as much as the answers you give yourself.

I Called this talk the New Normal, and the Words I say, but what I really mean, is I am here now, in this place. I can be happy about it, or miserable about it.

Either way I am here… Come and get me.

13 races from September to August. Ironman Finish Line area
13 races from September 2009 to August 2010.
Ironman Finish Line area

For some additional context to this story and my 2010 Year I joined a fundraiser called Race4MS which was started by Jasper Blake who is an inspiring Ironman Athlete. In the 12 months prior to Ironman Canada I completed 12 races starting with the Montreal Marathon in September 2009, raising funds towards the MS Society of Canada and raising awareness about Multiple Sclerosis which is a neurodegenerative condition effecting approximately 100,000 Canadians and an estimated 2.5 million people worldwide.

I share my story because I had no story like this to look at when I was diagnosed almost 12 years ago… a lot has changed in that time, but there is still no cure…yet Links: