Barefoot Bob and Boston
My friend Bob showed up today for our run barefooted and wearing some soccer shorts that must have belonged to one of his kids. It wasn't that he was in a hurry. He wasn't late meeting us at Dan's Foods where he, Tom and I agreed to meet. It was because no one in his family was awake to help him pull on his usual running shorts and get his socks and shoes on. Bob has ALS or Lou Gehrig's disease. This disease is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually lead to their death. When the motor neurons die, the brain can no longer control muscle movement. Bob can't use his hands very well any more and has lost almost all of his upper body strength. Sadly in some ways, the mind is not affected and people with this disease are aware of how fast they are going and what they are losing. To read more about this disease, click on this link: http://www.alsa.org/als/what.cfm?CFID=4029377&CFTOKEN=91308295.
For Bob, this disease has pretty much killed his upper body. His arms, which last year at this time, were strong and muscular, are now wasted away. He can't grip anything with his fingers. His voice is getting softer and slower and you can tell he speaks with more effort. But still, he smiles as he walks over to my car to greet me- barefooted and wearing those soccer shorts. Still, he runs with us. Tom helps him put on his socks and shoes and we are on our way, running, but mostly walking. We don't care because for Tom and I, there are six other days in the week that we can run faster and longer if we want. We won't have too much time left to run with Bob.
During our run/walks, we love to reminisce about our experience a few months ago, running the the Boston marathon. While Boston is a big deal because you have to qualify by running a previous marathon in a prescribed time based on your age group, it had a different meaning for us. This marathon was for Bob. It wasn’t about how fast we could do it – it was just doing it and savoring every minute. Bob, Paula, Tom and I trained and ran it together.
At first it looked like the weather would not be on our side. A strong storm brought rain and floods to the East coast. We later decided this just added to the entire experience. On the morning of the marathon, the rain and wind turned our umbrellas inside out on the way to the bus. I did not hear one runner complain. We were just happy to be there. There were about 20,000 runners who qualified for the marathon and most of them were not going to let rain and winds prevent them from running. I was a little discouraged about the weather. But, I knew a lot of folks were “putting in a good word” for us, especially friends and family who knew we were running and what it meant.
All of the “good words” must have paid off. When we got to the starting area in Hopkinton, a local cameraman (CBS filmed Bob for a story they later did on the evening news, about Bob and his wife Deb, who has Lymphoma) took us to his aunt and uncle’s home so we did not have to stay in a cold, wet tent for two hours.. We sat near a wood stove and drank coffee with a nice elderly couple.
We enjoyed every mile of that marathon. Bob did not complain once, although I can still see the look of pain and determination in his eyes. We had some funny moments – like when Tom was helping him in the porta potty and another guy came in because they forgot to lock the door. There was Tom, pulling down Bob’s pants. I am sure this guy thought “couldn't’t they wait till the end of the race?"
We yelled at the crowd the entire way and were grateful for the folks that stood in the rain to cheer us on, especially the crazy gals at Wellesley college, whose screams could be heard a mile away. They held up signs that said “kiss me". We drank beer given to us by drunk college kids (or at least I did). We sang silly songs and were passed by a guy with a broken leg and by a race walker who I later found out was the father of one of our doctors at my work. We came upon a poor girl who had a piece of toilet paper sticking out of her running shorts. Paula ran up to her and told her after we all decided this was the right thing to do. The girl was crying because she had diarrhea and couldn't run as fast as she had planned. The toilet paper she pulled from her running shorts was brown at one end so Paula had no reason to doubt her. Paula, being the kind person that she is, put her arm around her and said, “My friend back there has Lou Gehrig’s disease. And diarrhea isn’t terminal."
For Bob, this disease has pretty much killed his upper body. His arms, which last year at this time, were strong and muscular, are now wasted away. He can't grip anything with his fingers. His voice is getting softer and slower and you can tell he speaks with more effort. But still, he smiles as he walks over to my car to greet me- barefooted and wearing those soccer shorts. Still, he runs with us. Tom helps him put on his socks and shoes and we are on our way, running, but mostly walking. We don't care because for Tom and I, there are six other days in the week that we can run faster and longer if we want. We won't have too much time left to run with Bob.
During our run/walks, we love to reminisce about our experience a few months ago, running the the Boston marathon. While Boston is a big deal because you have to qualify by running a previous marathon in a prescribed time based on your age group, it had a different meaning for us. This marathon was for Bob. It wasn’t about how fast we could do it – it was just doing it and savoring every minute. Bob, Paula, Tom and I trained and ran it together.
At first it looked like the weather would not be on our side. A strong storm brought rain and floods to the East coast. We later decided this just added to the entire experience. On the morning of the marathon, the rain and wind turned our umbrellas inside out on the way to the bus. I did not hear one runner complain. We were just happy to be there. There were about 20,000 runners who qualified for the marathon and most of them were not going to let rain and winds prevent them from running. I was a little discouraged about the weather. But, I knew a lot of folks were “putting in a good word” for us, especially friends and family who knew we were running and what it meant.
All of the “good words” must have paid off. When we got to the starting area in Hopkinton, a local cameraman (CBS filmed Bob for a story they later did on the evening news, about Bob and his wife Deb, who has Lymphoma) took us to his aunt and uncle’s home so we did not have to stay in a cold, wet tent for two hours.. We sat near a wood stove and drank coffee with a nice elderly couple.
We enjoyed every mile of that marathon. Bob did not complain once, although I can still see the look of pain and determination in his eyes. We had some funny moments – like when Tom was helping him in the porta potty and another guy came in because they forgot to lock the door. There was Tom, pulling down Bob’s pants. I am sure this guy thought “couldn't’t they wait till the end of the race?"
We yelled at the crowd the entire way and were grateful for the folks that stood in the rain to cheer us on, especially the crazy gals at Wellesley college, whose screams could be heard a mile away. They held up signs that said “kiss me". We drank beer given to us by drunk college kids (or at least I did). We sang silly songs and were passed by a guy with a broken leg and by a race walker who I later found out was the father of one of our doctors at my work. We came upon a poor girl who had a piece of toilet paper sticking out of her running shorts. Paula ran up to her and told her after we all decided this was the right thing to do. The girl was crying because she had diarrhea and couldn't run as fast as she had planned. The toilet paper she pulled from her running shorts was brown at one end so Paula had no reason to doubt her. Paula, being the kind person that she is, put her arm around her and said, “My friend back there has Lou Gehrig’s disease. And diarrhea isn’t terminal."
It has been hard to watch Bob go from 8 to 11 minute miles. But he has adjusted, as humans do when they are faced with adversity. When Bob found it difficult to keep up his usual pace (the muscles supporting breathing could no longer keep up with the increased demand), he bought a book about completing a marathon with a combination of walking 3 minutes and running one minute. When he could not use his hands to open his water bottle, he learned to let us do it. Our runs have become different – we don’t worry about our times and we don’t complain anymore about any aches and pains. Somehow anything any of us might be experiencing seem minimal. We know that our running can and will improve. But for Bob, running will soon be just a memory as this disease destroys his leg muscles. So we enjoy each run knowing our time to run with Bob is limited. We don't focus too much on what Bob can't do. We just remember Boston.
We all are connected to the tragedies in other folk’s lives and it is amazing to me how everyone wants to do something to help. It occurs to me that if we all focused on what we could do to help each other all the time, we would not focus so much on our own woes. Knowing Bob has made me realize how adaptable humans are and Bob and Deb’s attitude confirms this. Bob says “I would rather die from ALS than from a heart attack. Now I have more time to spend with my family and friends and let them know how much I love them”.
Both Bob and Deb are open about their situations. Deb says, “I was supposed to die first”. Their children call them “Team Terminal”. When asked if she believes in miracles, Deb replies, “We don’t believe in miracles, we depend on them”.
Running has taught me about a lot of things in life. Running with Bob has taught me to work harder to live in the moment. And a marathon means a lot more than just how fast you can get through it. As long as Bob shows up, we will be happy to help him put his socks on and tie his shoes.
We all are connected to the tragedies in other folk’s lives and it is amazing to me how everyone wants to do something to help. It occurs to me that if we all focused on what we could do to help each other all the time, we would not focus so much on our own woes. Knowing Bob has made me realize how adaptable humans are and Bob and Deb’s attitude confirms this. Bob says “I would rather die from ALS than from a heart attack. Now I have more time to spend with my family and friends and let them know how much I love them”.
Both Bob and Deb are open about their situations. Deb says, “I was supposed to die first”. Their children call them “Team Terminal”. When asked if she believes in miracles, Deb replies, “We don’t believe in miracles, we depend on them”.
Running has taught me about a lot of things in life. Running with Bob has taught me to work harder to live in the moment. And a marathon means a lot more than just how fast you can get through it. As long as Bob shows up, we will be happy to help him put his socks on and tie his shoes.
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