The thrill of victory and the agony of defeat

At times it feels as though my recovery mirrors the thrill of victory and the agony of defeat. Sometimes I experience both in the same day.

It was roughly 6 weeks ago when we made an attempt to break my walking record of 113 feet. My team and I were locked in and ready to go and my body felt really good. We got off to a strong start with only a few spasms and not a lot of tone getting in the way of making progress. My physical therapy team was providing positive feedback and as always, motivating me to push for more.

My body felt great as we approach the end of the hallway this meant I would have to make a U-turn which requires a lot of additional energy and concentration but we pulled it off without any mishaps. I stared down the long hallway hoping to make it back to where we started from. In my mind I knew we were close to my previous record and my body still felt great so we kept pushing.

My team continued to encourage me as we got closer and closer to reaching the finish line. My body started to fatigue but I had only one thing in mind and that was to get to the end. The adrenaline kicked into overdrive and it no longer mattered if my body could reach the goal. I knew in my mind we would at all costs.

We reached the finish line! My physical therapy team and I were really excited because we knew we just walked a lot farther than we had ever done so before but we didn’t know exactly how many feet.

Jay got out the measuring tape and I could see the expression on his face and knew he had great news for me and the rest of the team. 173 feet! A new record and the thrill of victory!! We celebrated this huge victory and hoped this would pave the way for many more. I owe a great deal of gratitude to my team for sticking with me and encouraging me day in and day out.

The following week we set out to meet or beat the new record. As I stood up I felt strong but as I started to walk I immediately knew something was wrong. I felt tightness in my chest but hoped this would pass. I took a couple of steps and the tightness only got worse. “Oh no” I thought to myself not again! Once again I stopped breathing, nothing going in, nothing going out and I had to sit down immediately.

We hoped it would soon pass but this was not the case. We had to call in a code which meant all of the nurses and doctors would rush in to help me. And they did, 10 of them rushing to my side.

It seemed as though it took forever but eventually I was able to get a short breath into my lungs. Like the previous times this was really scary. We headed back into the therapy gym to try to loosen up my intercostal muscles and to free up my rib cage so I could breathe more easily.

The following therapy session we tried again to walk but this only resulted in the same outcome. I stopped breathing, a code was called in and my walking session was over. I was immediately grounded from any future walking sessions until we get to the bottom of what is causing the problem. That was five weeks ago and I have not walked since. I have experienced the agony of defeat.

Over the past five weeks we’ve done a few tests with many more lined up to get to the root cause of what is causing this problem but so far we have not been able to get to the bottom of it.

I am thankful to my doctors who are working with me to figure out why this is happening. I am also thankful to my physical therapy team because they always seem to have a great plan in place so that I can get the most out of therapy given what I am able to do.

The picture above is from last week when I visited Project Walk Boston. This is an amazing gym set up specifically for those who are disabled and it is staffed by a wonderful group of motivated fitness experts who really get it. I was evaluating the restorative therapies RT 300 FES bike. They hooked up 20 electrodes to my legs and the computer fires each muscle individually so I could ride the bike. Very therapeutic and extremely cool! This machine builds muscle and reduces tone and spasms.

In a short period of time I experienced the thrill of victory and the agony of defeat. It really humbles you and reinforces the commitment to never give up!