Losses

Yesterday was a beautiful fall day as I ran to my friend Bob's house. The leaves were jumping off the trees and it was a warm 50 something (just like me). The smell of fall reminded me of being a little girl, playing in piles of leaves and making leaf houses in the school yard.

A year ago at this time, my friends and I were basking in the satisfaction of having finished the St. George marathon and qualifying for Boston....Me, Bob and another friend, Tom. Our friend and running buddy, Paula had qualified at another marathon, so she was going to run Boston with us too. I thought about all of this as I ran to Bob's house. Last year at this time, he would have met me at my house to do our usual Saturday run.

Shortly after the St. George marathon, Bob got diagnosed with ALS or Lou Gehrig's disease. The disease has been relentless, taking away first the use of his hands, muffling and then slurring his voice and making every breath a struggle. In the beginning, it was little things. I had to open his goo for him and the water bottle. We brushed it off thinking that this was just because it was cold and none of our fingers worked as well when they were cold. Then it progressed to us having to zip up his jacket. We could no longer be in denial.

For a while this was the only effect of the disease. We jokingly talked about how we would dump gatorade down his stomach tube when it came to that point. We seriously told him that we would run with him until he couldn't - we would be there. I don't think any of us thought or really believed that he had this bad disease - didn't that happen to other people? But as the winter went by and we still made plans for Boston, the muscles that supported Bob's lungs started getting weaker and we walked more than we ran. Bob remained cheerful and we began a program where we walked one minute and ran three. That worked for a while and as it got closer to Boston, the disease picked up it's attack on Bob. He never complained - just took each loss as it came and then made adjustments. The Boston marathon gave him a goal and he never once mentioned not doing it. Nor did we.

As I ran through the smell of fall and the leaves and past the stucco monsters springing up like weeds and choking the smaller homes around them, I realized what courage it must have taken Bob to run Boston. He never complained but as the miles went by, his core muscles failed him and he slumped over further and further, like an old man. This was a guy who a few short months ago, had completed a marathon in 3:34:56 - 4 seconds to spare for a Boston qualifying time. I know he was in pain and it took every ounce of courage and detemination for him to keep putting one foot in front of the other. We made it and crossed the finish line arm and arm, as the volunteers were already cleaning up and very few spectators were left.

We all had done better times than the 6:12 we finished in, but I don't remember a more meaningful or enjoyable or inspiring run that that cold, rainy day in Boston which was to go down in history as the worst weather conditions for that marathon. It seemed fitting that Bob would have one more challenge in his last marathon and it makes the memories even more special and maybe even exaggerated, each time we talk about it.

In the months after the marathon, we met at Bob's house and walked our usual Saturday runs. These walks became shorter and then became interspersed with a few rest periods for Bob, until finally he had to tell us he just didn't have the stamina to even walk with us. The irony was that his legs worked, but his lungs didn't work enough to give him the oxygen he needed. And then his wife relapsed and needed more chemo for her own disease - non hodkins lymphoma. Almost seems like I am making this all up. Bob got a stomach tube (a PEG as we call it in the business)so our Saturday runs ended up with all of us at Bob's house, giving him a tube feeding and having coffee and talking about running instead of doing it.

As I picked up leaves to take to Bob - it was something of the run I could bring him-I thought of my dad. He could have told me what each of these leaves were. I have lost him, but he died losing only one leg and his will to live. He could still talk and eat and use his hands and could breath on his own. For many people, there is always hope that a disease will get better, but not with ALS. It is a death sentence, but before you die, you slowly lose one thing at a time. It isn't pretty. Most people die within two years and they die knowing what they are losing. ALS does not affect the brain at all.

At Bob's house, I made coffee and gave him the tube feeding and joked about putting whiskey down the tube. I cleaned out his mouth - so dry from not taking any fluids. I am so grateful to be a nurse and sad at the same time, because I can see the failure of his body so clearly. I know that the calories I am giving him in his feeding are being used up in his work of breathing and probably even talking to me.

We talked about Bob's fear of getting a tracheostomy and a ventilator, which is scheduled in another week. It's either this or he will die because he can't breath. He says he wants to stay around for a while yet as he has things to do. He also has 5 kids who don't want to lose him or their mom. He is afraid that the ventilator won't make up for losing his ability to talk. Now his voice is hard to understand and it takes effort for him to coordinate the breathing with the talking, but he still has a voice. He remains cheerful and is trying to learn how to use a voice synthesizer. I wonder how one family can have so much bad stuff. Like many others I am sure, I wonder about my belief in a God that would let this happen.

As I leave to run home. I realize just how much I take for granted...like using my hands to put on gloves and adjust my IPOD, pulling up my own pants and wiping my own butt. Bob can't even do these personal things. Bob's gift to me and my other running buddies though, is giving us back the sheer joy of being able to be out there running through all the seasons. I think we all feel grateful for the things we can do. I don't think it will matter much anymore what our times are.

Life is about loss, I know - it's an old cliche that has been pointed out in many different places. Someone also said, that you have to learn to love life more than you mourn the losses. I can't comprehend the losses that my friend already has faced and the ones that are coming.

I run back through the familiar streets and the scattered leaves and I feel so strong and able. I think I am running better than I have in a long time. I will continue to run for my friend Bob and others who can't, until I have to hang up my own running shoes. I vow to never ever have a bad day running again.