ALEX MAISH
We who push forward to make our lives what we want them to be in spite of our hurdles provide inspiration to others to do the same.
BY ALEX MAISH
“Hey, way to go! Keep it up!” The tough-looking dude behind me whom I was looking at in the mirror seemed to be talking to me, but I had no clue who he was. I was just doing my normal curls as part of my regular weight program at the gym, and yet there didn’t seem to be anyone else near me he could be talking to. “That’s the way to do it! Keep at it.” I turned and asked him if he meant me. “Yeah, way to go bro.” It hit me that I was wearing my oxygen canula from the portable pack I had on my back as I had for months, and that this was the reason for his speaking out. “Keep working at it.” “Yeah, well that’s what I do,” I offered. “I admire your working out. It’s a real inspiration to me,” he said. “Well thanks,” I replied. I was touched and amazed.
A year earlier I finally had admitted that due to my cystic fibrosis I couldn’t keep up enough of an effort in aerobics without de-saturating, even when using oxygen, and I had switched to using the treadmill instead. Over the intervening months I started carrying my oxygen pack with me while doing weights too, knowing I’d do better with a bit of oxygen, but feeling “this isn’t me!” My body had always been there for me. I could push it hard and feel its strength. Now I was at the mercy of my declining lung function. I fought actually wearing the oxygen when I was so visible going from weight machine to machine, and just carried it around unused until I got on the treadmill where I could hide in the corner. I felt ashamed of my condition. I felt less than whole and didn’t want the stigma of being seen as disabled. The feeling surprised and disturbed me. I thought I had left that behind when I stopped trying to hide my CF at work and socially many years earlier, but then I didn’t have the limitations and visible sign of disability that wearing oxygen brings.
In elementary and high school, students can be cruel and hurtful to those who are different, but after that most adults mature to the point where they can accept people for who they are. What is sad is some people with CF never realize students at that level are struggling with their own self-esteem and use put-downs as a way to feel better about themselves. Anyone who can be taunted generally is, and it isn’t selective for CF. None of it reflects on the true character of the taunted, but sometimes it can make one feel that way if there isn’t positive support or strong self-esteem to provide a balancing message. We with CF and others with real disabilities often are left with the message that we aren’t OK, that we have less value than others, especially when our therapy provides daily reminders of our condition. Unless we are lucky enough to receive good positive reinforcement, we find ourselves hiding our CF secret until we can prove to ourselves we have value and can demonstrate genuine accomplishments and contributions. Once we feel good about ourselves we can believe others who feel good about us.
Revisiting that feeling of shame and apologizing through my actions for having to wear oxygen felt very de-centering. I didn’t like it. I reminded myself of all the valuable things I was and was doing in my life, and that helped. What worked best was getting my focus off my CF and its requirements and back onto my goals as a person. I was here to get a good workout, and my oxygen would help me work out harder. That got me grounded again. Who cares what people thought? I started working out and generally even forgot I was wearing oxygen. People would look at me and I’d look back, and then realize they were looking at my oxygen. They were just curious. One even asked if I was a runner and if it was a new type of training method! My oxygen was no longer a stigma to me, but neither did I use it as an excuse to get out of taking my life where I wanted to go. It just was. My focus was beyond it.
And then the stranger spoke up and told me how I inspired him! (Now, that I didn’t expect.) I had gone from ashamed to inspiring in a few weeks. And we are inspiring. There are so many people in the world who don’t accomplish, who use any or no excuse to avoid accomplishing. We who push forward to make our lives what we want them to be in spite of our hurdles provide inspiration to others to do the same. Far from being pitied, we are admired. We can choose to focus on our CF and to let it limit our potential, or we can deal with it and go after all that life has to offer, inspiring others along the way.