Running Man

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Tuesday July 29, 2014

Running Man

Time is a blur. Mom and Dad are heading home from Las Vegas to Walnut Creek this Thursday. I had the distinct joy of taking my family to Yosemite, for about an hour, and then Lake Tahoe this past weekend. When we left I was concerned about the last three months of therapy unraveling as my dad had hit a plateau and my mom clearly wants to go home. All of these things stirring at once led into a panicked phone call from my mom about five minutes before our morning session with Dr. DeMartino was scheduled to begin. Apparently my dad left their hotel at about 8:05am to go for a walk. As per usual, he did not have his phone on him (my dad’s frequent disappearances without any way to reach him are “an issue”). His walks normally last about twenty minutes. By 8:30 my mom was concerned. By 8:45 she was downright scared and understandably so. This is a man who has Parkinson’s, is always a fall risk, is in a busy area of a somewhat familiar town and is running late to an appointment he very much looks forward to.

I turned my car their way. My mom told me where I should start to look when I arrived. A ton of scary thoughts ran through my mind. In 2004 I remember seeing my dad as vulnerable and having strong protective feelings about him – almost flipping the parent/child relationship. Ten years later, with my dad markedly more vulnerable and on his own, my fears were piqued. About five minutes into my trip I got a text saying he was okay and they were on their way.

Dad tells me his morning story

At Dr. DeMartino’s, my dad walked in out of breath – almost like he walked there. I wondered if this wasn’t far from the truth considering how my mom likely tongue-lashed him – or maybe he was just hustling for safe cover after a getting an earful during the drive. I asked him how his adventure was. He said it was a good/bad situation. He said he lost track of time. My first thought was, “Oh no – this is a cognitive thing”. Then he added it was because he was enjoying the walk so much. He simply forgot to look at his watch because he was out exercising and wasn’t in pain as has become the norm. When he did look at his watch he saw how late he was. This is where it gets great: he ran a half mile back to the hotel.

My dad was an avid runner in the late 70’s through the early 90’s. He continued to run after that, but golfing became a bigger focus in his retirement in 1994. But running was very dear to him because of the mental peace it brought him as well as the physical satisfaction. After his diagnosis in 2001, he didn’t give much of an effort to run. His last effort was in 2005 while Annamaria and me were living with them. He did a 5k and it hurt – a lot. He hadn’t run since.

When I asked Dr. DeMartino about it, he smiled, shrugged and said he wasn’t terribly surprised. He’s been telling us for weeks how impressed he is with my dad’s physical makeup. For all of Dr. DeMartino’s athleticism, he has said he’s never been a distance runner. He laughed and said, maybe I should run with you (Dan). I am going to do my best to hold him to that.  

Opening Day - Hope

The Boys of Summer - Second Base, sequel to the award-winning first documentary, began principal photography on March 13, 2014. We need your help. Please visit our kickstarter page and share it with your friends and family.

For those who love the game, the excitement of a new baseball season is remarkable. It coincides, not coincidentally, with the rebirth that is spring. Temperatures warm, thoughts of summer abound and hope is renewed. Why does hope matter? Life is lost without it. Life without hope is mechanical, thoughtless drudgery. What one hopes for is entirely subjective; a day of good health, a winning lottery ticket, a call from a loved one, a base hit or a strike out. Maybe all of those things. Spring and baseball bring them forth for those who worship at the diamond. We hope.

Today we're gearing up for our road trip north to the Bay Area. We leave on Wednesday for Walnut Creek, the city where I grew up. I'm always renewed when I return. We will stay with my parents in the house where I grew up. I'll see many friends, now with families of their own, who I grew up with. A good friend's wife just gave birth to their first child. As parents in our 40's, this is at least somewhat remarkable. New life is new hope. We hope.

I will return to the spot where I shot the cover for "Boys of Summer". It's my favorite picture I've ever taken. It's one of the few times I've had something become, in reality, so clearly and accurately what I saw in my head. Dad and I will, once again, play catch. In between us, in addition to the ball, will be my son and daughter. This is second base - a hopeful base inasmuch as we've advanced. Still a long way from home, but better here than on the bench. We hope.

"Boys of Summer" is evolving. The tagline/metaphor for the project is: "Baseball is a vehicle". We will ride this beast wherever she roams. Just last week we solidified a relationship with our local APDA (American Parkinson's Disease Association) chapter. We have ongoing work with Superior Health Solutions (which is offering a progressive treatment pro-bono for my father) and the New York Stem Cell Foundation (which has taken my dad on as a volunteer to grow stem cells from his skin - we just have to make it back there). We hope baseball will be our vehicle - taking us back there for the games, giving us the opportunity to participate in an exciting study. We hope. 

I also received notification that I was wait-listed for Duke's MFA Documentary program. While this isn't the jump up and down moment I was hoping for, a la acceptance, it does give me hope. Duke's Neurology department does a great deal of work with the Michael J. Fox Foundation. Boys of Summer has a relationship with MJFF, as well. This would be a great opportunity to bring parties together via the medium of documentary in a way that serves all. We hope. 

The Boys of Summer - Second Base, sequel to the award-winning first documentary, began principal photography on March 13, 2014. We need your help. Please visit our kickstarter page and share it with your friends and family.

Boys of Summer Book - Entry #163

You can see the complete film "Boys of Summer" for free by clicking here. 

100% proceeds go to the Michael J Fox Foundation. 

April 1, 2007 - Bob
Las Vegas, NV

Annamaria and I have moved back to Las Vegas. In a way, this is “full circle”. It was very hard leaving the Bay Area, my friends, co-workers and my parents. Living with them for 18 months was such a gift. It was not our intention to stay with them that long, but life, for numerous reasons seemed to encourage us that way.

I had many feelings about living with them:

*The joy and friendship of dinners, movies or walks together.
*The sadness of seeing the ups and down in mom’s health particularly at such close range.
*The admiration of watching dad manage his PD in different ways.
*The strangeness of simply being that close to my parents as an adult, with a wife, no less. What did that say about me? There was guilt, as if I must be a failure to be living with them. There was also the reminder that what Annamaria and I were doing was helping from the ground level.

Ultimately, there was disappointment in simply not being able to afford a house in the Bay Area. We’re in a large group there, so I know I shouldn’t feel too bad. A house of the same size and with far more amenities is about half the price out in Las Vegas. Annamaria’s family lives out here and this is a place where Annamaria and I met and have had success in.

How will my parents be? They’ll be as they are supposed to, as well and conciously as they treat each other and themselves. I know Annamaria and I can only do so much. What my parents will do with their lives and how they will manage their illnesses is ultimately up to them. I don’t need to live with them to support them. I also know that part of the support I can offer is living a happy life with my beautiful new wife.

They’ve got a tremendous support system of friends, family and medical staff up there. And if anything really goes crazy, I’m only an hour flight away. I have to get on with my life and my family now. I’m a married man. Annamaria and I are (gulp) talking about kids of our own. That’s a little way off, but with a wife and a house, that “next question” is being asked with greater and greater frequency...

I think about taking my kids to their first ballgame. Tears well up just thinking about it. I’ll buy my child a snack. (FYI: I use “my child/kid” etc. because it doesn’t matter if we have a boy or a girl, they’re getting the game experience! Matter of fact, if my wife has her way, we’ll have twins.) I’ll make sure my child has the appropriate hat and jersey on (I really hope the kid’s first game is an A’s game...I’ll probably have the little one in A’s gear regardless of where it takes place). We’ll cheer, we’ll dance, we’ll sing “take me out to the ballgame”. I’ll teach my child very small things because I don’t want the experience to be a lecture...but understanding why the batter bunted or why an intentional walk was issued isn’t that hard to explain. And I’ll probably have to carry my child back out to the car because he or she will have fallen asleep by the time the game is over.

I hope my dad is with me at this game. And I hope they’ll have found a cure for Parkinson Disease by then so when my kids ask, “What were you guys talking about in the “Boys of Summer” movie?” I can tell them: hope and baseball.
 

Boys of Summer book Entry #52

July 4, 2004 - Dad
Charlotte, NC

Happy 4th of July! Today is our first day game at a park with no roof.  We arrive at Ted Turner Field after passing through the parking lot where the Fulton County Stadium had been. All that is left is a monument to Hank Aaron’s 755th home run. We meet Bob’s friends, Naiden and Barb, who had driven from Charlotte, North Carolina. We enjoyed a donated lunch at the Chop House -- a restaurant inside the ballpark just beyond center field.

When we order beer, we are told they cannot serve it until 12:30 which is only 15 minutes away so we say "that’s fine" and next they ask me for I.D. – great kindness!

It turns out they have to ask everyone regardless of what they look like. 

Before the game there are parachute jumpers from the armed forces and a very impressive low fly over by fighter jets. The Braves are hosting the Red Sox in what turns out to be a very exciting game. Boston got off to an early lead. In the fifth inning Atlanta scored 9 runs and ended up winning the game 10-4. In the bottom of the 8th, there was a sudden downpour that caused a 40 minute rain delay. The ground crew got a chance to show off their talents and had the field ready to go in short order. After the game we drove 3 to 4 hours to Charlotte to spend the night with Barb and Naiden. 

July 4th, 2004 - Bob
Charlotte, NC

Last night, I had my 2nd dream of my dad being attacked or somehow looking frail. The first, which happened earlier on this trip, involved some street thugs coming at him and me jumping on them and literally ripping one of their throat boxes out.

Last night it was a woman in a car who was backing out (while on the phone and breast-feeding her child -- help me Freud?) who almost ran over my dad. My dad, for some reason -- his frailty? -- was not able to get out of the way. She didn’t run him over, but I screamed at her to look out. She didn’t hardly acknowledge me, so I jumped on the side of her car and demanded she acknowledge me and that she almost ran over my dad. 

I was reflecting on some conversations I had with dad yesterday. We talked a lot about faith as it is a recurrent theme in what we’re doing.

What is faith? Does dad have faith? What is my faith? One of my frustrations with Dad growing up has been his not taking a stand. He doesn’t make a decision on lots of things, he just allows them to be what they are. But even as I say that, it doesn’t sound like a bad thing -- that sounds good. But there’s an indecisiveness sometimes, or an unwillingness to go forward with things that makes me feel like, “Dad, make a decision.” Not that he never does -- God, I’m trying not to be unfair about this. Every time I say something, part of me says, “No, actually, dad does do that.”

So what does that say about me? Am I unwilling to make decisions on things? I think I’m pretty decisive. Got us to this point, obviously with the huge help of many others. I don’t know. I’m tired. There are a lot of things running through my head right now.

I’m so happy for the things we’ve accomplished, So excited for the things we’ve got in front of us. I think I’m a little sad about not being able to express the goofy side of myself. I can do it, but it doesn’t always get validated on this trip.

So maybe part of what I’m seeing is that there is a falloff in some of Dad’s energy. And part of it is due to his Parkinson’s. A part of him is going away. When he’s there, when he’s rested, there’s the dad spark that I know and love and he’s a wonderful guy. And I love him no matter what. At the same time there’s a sadness when there’s a part of me that wants to play -- I guess it’s my little boy wants to play with dad and he just doesn’t have the energy to give me what I want. And that’s selfish on my part -- no doubt. I want my dad. I want to play with my dad. That’s what I want. It’s a more limited thing these days in terms of what he’s available to.

I get scared, too, sometimes that maybe I’m pushing too hard on this trip and, God I want to be sure that Dad’s okay -- that I’m not doing anything to further the process or the pain. You know I find myself sometimes following my dad and putting an arm out as he’s walking because I’m afraid he’s going to stumble or fall. And that’s such a weird feeling because Dad in my mind, the mythic, the hero dad, that he has always been is a guy who’s so strong and so vital and active and a go-getter. To see him struggling or simply not having the energy to be the man I’m used to him being is hard. It certainly makes me question myself and it makes me question the future for him. He seems to be handling everything really well. I’m just so glad he agreed to go on this trip. And so glad that the amazing people we’ve met along the way have supported it happening. And now we’re starting to hear, in an interesting way, people thanking us for making this happen. Our trip is meaning a lot to them. That’s picking up steam as we go And what an interesting thing it is to have people thanking us on the heels of what some people thought was just a selfish trip of a father and a son. Some people thought, who is this kid who just wants to go out and hang out with his dad at the ballpark? Part of that’s true -- I do want to go and hang out with my dad at the ballpark. Part of it is this kid also wants to do some good things for people other than my dad. Bringing Parkinsonians together to see if there’s something the community can do to raise the common good for Parkinson’s Disease. And that might be as simple as awareness, That might be as simple as community. That might be as simple as networking and connecting. And if I can help do that through what we’re doing, then I’m honored and blessed. This feels like a very good use of my talents. And I’m thankful.

9:50 AM - Bob

I am struggling -- mightily at times -- with my dad’s quietness. I am (generally) optimistic, light, bright and excited about life. Even when I’m tired, I’m open to the possibility. There is (what I perceive to be) a crankiness and a closed-off nature that appears in my dad sometimes. As a child, I remember a lot of cynicism. That’s a painful thing for me to be around because it works so hard to crush possibility. Possibilities are hopes. Hopes are dreams. Hope/dreams take what are only imagined and tells them, “it’s okay -- you’re not crazy to hold that thought”.

I am hopeful. I am a dreamer. I believe in that which is not yet. That spirit is part of what got us on the road to where we are now. I trust today, remember yesterday and dream of tomorrow.