Goodbye Bob

My friend Bob died on Monday, the 22nd, just the way he had planned. His funeral was today. I spoke at it and my talk is below. What a shitty disease ALS is. The picture is of him getting his medal at the finish line in Boston in April 2007.

What a marathon my friend Bob ran these past few years! And what a privilege to have been part of his final marathon. The first time I met him was when he was running his first half marathon with Tom Loken. He quickly became part of our running group. On Saturdays, we ran anywhere from 6-20 miles. We trained together for Bob’s first marathon – the Salt Lake Marathon. Over the many miles, we talked about our families, how we could run better and faster, kids, just about everything –except horses. Bob loved his family, was proud of his kids. I always described him as someone who emanated kindness. To me, he was “Sun News Bob” because of his email address but also because he was always positive – with that great sense of humor that even ALS didn’t take away. Just a few weeks ago he mentioned to me that he better get an absentee ballot! Sometimes when I suctioned him, he would playfully roll his eyes back into his head and pretend I killed him. “Not on my watch, I kept telling him.

When Tom and Bob decided to run Boston I was on the fence whether or not I would do it. I still remember that day in late summer when Bob showed us these weird muscle twitches he had on his chest. We were nurses and I know that deep down we were thinking “that isn’t good”, but, being in denial, we reassured him it was nothing. We believed nothing bad would happen to us – we were strong runners.

We went on to run St. George and qualify for Boston. I was still undecided about doing it until after Bob did the Chicago marathon and found out he had ALS. I asked Tom if they still planned on running Boston and he said “absolutely”. I was in and so was Paula.

What do you say to a friend who has a disease that you know is usually terminal in 3 years? All we could say was “it sucks” and a few other things I cannot say in church. Still we continued to run and train and make plans to adjust our schedule when Bob couldn’t run any more…I don’t think I believed that it would really happen.

The timing could not have been better for our training for Boston. Someone was looking out for us. We continued to run through the milder than usual winter. We noticed some subtle changes in Bob – at first they didn’t affect his running. He couldn’t zip up his jacket. His voice changed and became softer. When he couldn’t open his packets of energy gel, we blamed it on the cold weather…still in denial. Bob never said “why me”. He just made modifications. When training became harder, because he was losing muscle support to his lungs, Bob devised a plan where we would run for three minutes and walk for 1. Running a little slower gave us more time to talk and to appreciate our runs, the scenery and each other’s company. Boston is what kept us going – that and the support of our families and friends.

I will always remember the Boston marathon. It was the most meaningful thing I have ever done. When Boston was hit with a Nor Easter, and I could hear the rain beating on the hotel room window the night before the marathon, I said to Paula, “What more is God going to throw at this poor guy?” As it turned out, the rain made it even more memorable and it stopped before we started.

I savored the entire course and tried to hold on to every moment – Even though we walked most of it and only finished ahead of about 8 other people and a guy with a broken leg beat us, we felt like winners. It was great having Bob’s family there to cheer us on and I always will remember how proud Deb and the kids looked. I will always remember the girls at Wellesley (ask Tom about that) and how Bob never complained even though he was getting more and more tired. He never mentioned quitting. We saw a train and Bob said, “Do you know how tempting it is to just go and get on that train?” We all felt such admiration for people who finished marathons in 6 hours or more…all of us, including Bob, were under four hour marathoners. The back of our shirts said, “Heaven can wait. We’re doing Boston”. We got a lot of comments during the run on that shirt….the one Bob had on during his viewing.

I will always be grateful for the Saturdays I have spent with Bob and Deb the past year – first going over there to just walk with Bob when he could no longer run, later going over to have coffee and give him a tube feeding and then the last several months just talking to him. What courage it must have taken to make a decision like he did, and what courage for his family to accept it. And what courage it must have taken for him to let us help him with even his basic needs. I think we all did things that we thought we could never do but were happy to do for a friend. I know he and Deb would have done the same thing for any of us.

Believe it or not, we could find a few good things about Bob’s situation. Here’s my top ten list:

1. An appreciation for friends and the goodness of people – even people in my hometown of 300 people were cheering for us in Boston – it made the local radio station. Monday they rang the church bells for him.
2. You don’t have to be defined by a disease but you are still who you are. Bob was always our friend and marathoner more than he was our friend with ALS.
3. An appreciation for health and our ability to run – each run to me is better because of Bob
4. To not take things for granted
5. Slow down. If it weren’t for Bob’s ALS we never would have gotten to know him and his family. Our days are usually just too busy to spend time just sitting and talking to those we love.
6. Living in the moment because you don’t know how many you will get.
7. Learning what “for better or for worse” really means
8. What courage really is – the ability to control what you can in adverse circumstances
9. Always say “I love you” when you leave someone.
10. Families are the most important thing we have – during good and bad times

Bob won’t leave any of us – he promised to come to St. George with me in a few weeks and I will look for him with his blue eyes and kind smile. I’ll see him in the faces of everyone because we all struggle with something. I will remember how much he loved running and I will be out there enjoying each minute and try not to focus on the inevitable aches and pains.

Thanks Deb, Tiff, Dan, Greg, Michelle and Chelsea, for sharing Bob with us. I know he was proud of you and grateful for all you did for him and you did a lot to make his days better – you are all amazing. Regina – you are also my hero. You made a big difference. I feel lucky to have met so many of his good friend – all of you.

Goodbye Sun News Bob, and thanks for your final gift of helping us to prepare for your death and help each other grieve in advance. It took courage to live, but even more courage to leave your family and friends. Remember to say hi to my dad! I will see you on the run. And we will always have Boston.