I would like to introduce you to Ed. If you met him today, it would not occur to you that Ed was dancing a year ago. I always knew he was in the room by looking down at the feet whisking across the dance floor because he wore his black and white shoes. He told me this week they are going to be buried with him because they cost a pretty penny.
Ed has Amyotrophic Lateral Sclerosis (ALS) also known as Lou Gehrig’s disease. The onset of the disease was sudden, though he admits there were minor symptoms over the last 10 years. Ed is an example of why independent contractors should be afforded access to health care insurance at reasonable rates.
He did not carry health insurance because it cost too much and opted to go to the doctor when it was necessary. It would not have changed the fact he has the disease. Earlier detection could have made a difference.
Now he sits in a wheelchair, unable to move himself. His mind is sharp, his humor untouched. Ed is just 57 years old.
The other day was one of the first signs that old man winter is leaving – it was sunny and in the 40’s. I promised Ed to come by and take him on a spin through the long-term care hospital wings since he does not have his electric wheel chair yet.
To Ed’s surprise, I bring a blanket and my black and yellow neon fleece hat – we are going to get some fresh air instead of trolling the hallways. Ed is excited.
For the next 15 minutes, it is my job to make sure he will be warm outside. Ed patiently tries to guide me on how to dress him, giving detailed instructions. I am fearful that I will hurt him by pulling him too far forward causing him to topple out of his chair or forcing his arm that is at an odd angle into a sleeve. Nothing fazes him because he wants to go outside.
Getting a coat on him is half-successful – the left arm made it into sleeve, the other part of the coat hangs over his right shoulder. I wrap the blanket around his exposed areas.
Outside, we settle into the sun and a bench where I can sit next to him. The blanket is protecting his body, his head is bare and the wind is whipping up a bit. I take out my hat to keep him warm.
“Oh no, not that,” he says, “what is that color?” He is referring to the neon green. I put the black side out and assure him he is fashionably safe.
We start out in our usual way of joking around and talking about some of the funny events we have shared over the years in our dance community. That is when the subject of the shoes came up. The conversation takes a serious turn.
I am quite candid about his situation. “I know it sucks, this definitely tests your patience.” I said as I reflect on everything he cannot do and the reliance he has on others to do the simple things we take for granted.
“This is nothing,” he says. “Patience is when you have to stand still for three hours without moving.”
When Ed enrolled in the U.S. Marine Corps, his first test in boot camp was to remain motionless. “It was essential to your survival not to twitch, no matter what the itch or how annoying the bug. That was tough. Failure to do that would endanger everyone’s life in the battlefield.” The recruits that did not pass went home.
It gives me pause to think about how the lessons we learn early in life set the stage for how well we cope with adversity today and in the future. It is truly remarkable when perspective out trumps physical reality.