Monday, August 24, 2015

Things I'd Never Thunk Before


I've loved long the Wizard of Oz but somehow it didn't occur to me till the day before I headed to Kansas City to make that organic media connection. In the first team I put together after brain surgery about 8 months for an ultimate tournament, we went costumed as characters from that movie with me taking the scarecrow, the missing brain jokes already well set in place. Still, it felt incredibly right to be coming to do a race in Kansas which was the launching spot of Head for the Cure. I've done it all 3 years they've come to Austin and so somehow it felt right to meet up in each other's home. It's a bit amusing that the night before the race I was up due a tornado watch/warning both brought awake and mesmerized by watching lighting. 

But  I've kept calling my teams for races, the scarecrows. There were some lines that stood out to me that are entirely self applicable like when that cute redhead comes crashing some things down with conviction into the picture, bringing color into a scene in a way unexperienced before. She frees the scarecrow from a mess he's gotten himself into for lack of that brain and he is her first companion on a new road. A tinman looking for a heart and a lion looking for some courage round out a fantastic crew.


The dialogue between these characters captures some part of this journey, my own road, even if I've never quite caught up
to the yellow bricks. A cursory reading of this or perhaps a simple conversation with me answers the question that redhead asks the scarecrow of how he can talk if he hasn't got a brain when he replies "Oh some people without brains do an awful lot of talking."

That scarecrow would ask for brains instead of a heart for a fool would not know what to do with a heart if he had one. The woodman thinks the heart is better since it and not the brain is what makes one happy. There is of course the reality that hearts will never be practical until they are unbreakable but there are parts of life where practicality is much over rated. That dance between the brain and heart hasn't been settled by much of humanity ever but there's a line about the interplay of the two that I always grasp a little better at these events, "a heart is not judged by how much you love but by how much you are loved by others."


As I helped with packet pick up, I watched teams take pictures in memory of, in honor of, I got a few more details about the founder of CEO whose been doing this for 13 years because his brother passed away from brain cancer. There is no way both my damaged brain and breakable heart couldn't absorb that the thousands of people who were here raising the better part of half a
million for brain cancer research, this is why we fight, why we do this events so that putting one foot in front of the other, we keep trying to defeat brain cancer step by step. For those us that aren't great at math that meant that's about $100 for every participant to as is their logo step by step. It was a humbling experience to see thousands of people taking thousands of steps. That 4 letter word that often goes through my mind, hope came shining through knowing that brain cancer has got quite the crowd to take on. The demons of brain cancers can only win for so long against these type of angels. 


To see a race like that where people find the balance of smiling and crying over a disease that made judge exactly how much they love those affected. The shirts, the signs, the tears, the hugs, whether they be in honor of, in memory of or besides those affected shows while this may be a rare cancer, it's affected some very special people in a very random meaningless way. But the people who fight back show exactly how much those affected mean period but especially to them. 

There were individuals there who I met that remind you that some people's paths are very different and difficult in their own way. There was a woman who was a mother of 5 facing her own diagnosis. She was there every moment of packet pick up and helping set up long before the crack of dawn. There were also moments of hope, a new technology that wasn't
around back when I had it that is being picked up in more places of a lot less "invasive" brain surgery with MRI's that are active through machines and people go home in less time, with less drugs. Both the technology and that it was lit up in emerald green skull brought a big smile to my face. 

When race time finally came, I got to do it with the double nervousness of having spoken immediately before and then getting up to the start line. I gunned out too fast for the 1st mile toned it down in the second and sped up in the 3rd. I would take 4th over all. I'd missed stopping my watch by a few seconds but I knew it was going to be close to my fastest 5k, certainly my fastest in almost a year. Even a guy with a damaged memory recalled that back in March of this year, both of my parents and Kiana had all gotten their fastest 5k ever and all placed in their age group at the Head for the Cure in Austin, when they'd been kind enough to extend their mission well beyond their hometown to mine. Now as I got to be in theirs, it would turn out that I'd be 1st in my age group and get my fastest 5k ever at 17.35, one second faster than any I'd done before. I'd done that course next to Kiana and then we'd gone back and finished with my parents. I was in Kansas without them or was I, some rainbow had to connect us because we all now have our PR's in my mind, or at least in my heart, on the same course. 

While I'm back at the  place called home, no place like it, and not in Kansas anymore, like the cute redhead who thought chasing wild adventures might be worth but eventually realized everything she was looking for was right in her backyard, I keep being grateful for the travels with and to some great company. When you're on these epic rides you wonder and hope they'll never end but realize that even if they only go for a chapter or two, you realize you aren't and shouldn't be capable of shutting down some of the emotions that come with goodbye. Still the trips, the chapters are unforgettable and perhaps that's one way to have the courage to grasp forever with your heart and mind. And that is exactly why and how I hope we keep heading for the cure. 


Monday, August 17, 2015

Defying Reruns

I continue to receive some very kind messages from people from elementary to strangers regarding the E60 piece (I've never really met a stranger so they don't stay strangers long if they chat). It's a bit overwhelming each time it airs that more people write on my Facebook wall than any other day except my birthday; on both I respond since I know it doesn't take much effort for someone to do so but it also takes as much for me to respond.  I still haven't had a chance to watch Remember Me in its entirety because every time it's aired I've had either a previous committment or Kiana was with me, my biggest commitment. I think ESPN sent DVD's at some point and then I'll take a look at it and it will be then I decide if/when Kiana will catch it because it deals with some heavy stuff and even if it's age appropriate generally, it may not be the right time for her to hear all of the story told therein. Still if imitation is the highest form of flattery, I can only say I was flattered to receive a picture of an entire family who painted their toenails together in the same shade as Kiana and I did our first time.

I did watch the preview which starts with a line which is borrowed from another piece that was worked on a couple of years ago for a joint project between my hospital and Livestrong. For the record while I have been in far too many media things, that one is my favorite video of the ones I've seen and its one Kiana has defintely seen. That line, "can I keep running and am I still fit to raise a kid because one is how I get through the day and the other one is why" is the opener of the E60 preview but the closing of the other continuing the highest form of flattery. The reason that piece is my favorite though is for a simple reason, not necessarily artistic or delivery but because I think it's the only piece after the marathon win that doesn't at all mention any race. You see the races isn't why I run; they're the reward. Or perhaps they just show the ancient fight or flight syndrome... I find comfort in that there are very few human beings on the planet who could both outrun me and beat me up. There's plenty of both but very few who can do one and not do the other.

Like in these blog entries there are some quiet nods to significant with medals and trophies and clothes in the background but it's literally just about the fact that Kiana and I run as point of connection. Sometimes nods are the best things because like dancing can be a way to be alone in a crowded room, the right nod in a public place is a way to whisper while shouting, or is it to shout while whispering, even in a crowd, you are special to me. But while I see the races as the reward I do live for the day to day or as my grandfather would put it, one day at a time, I get tired when I do two.

What always had and likely will always remain my favorite activity, running. While the most read blog entry ever will almost certainly be the one that I read about the Gusher marathon the day after it happened, my brother declared his favorite and best written one the one where I was correcting something about the piece. Still, I've heard enough messages and commentary where I've mostly put it together as it has run on ESPN and rerun ESPN2 (I don't have cable) and ABC, I've been making the joke that I'm not really into reruns (though with that said the very first interview that aired on me putting off brain surgery to run a marathon was on the local ABC so the universe circles back around). But within that rerun joke, there really is a truth about my approach to life. Even with a damaged memory, it's rare that I do anything twice. I have read two books more than once in my entire life, the Bible and the Lord of the Rings. I have bought two movies in my entire life, Amistad and the Lord of the Rings. I have downloaded 3 episodes of TV in my entire life but they all have been from Doctor Who.

I try to not be a guy who holds onto much, focusing on the future no matter how bleak and not onto the past no matter how grand. I have made it a new year's resolution to own less stuff at the end of the year than I did at the beginning each year but as I clean stuff out there are some things I wonder when I finally get ready to get rid of them how they lasted so long and others I can't seem to get rid of. I dealt with a couple of pieces of jewelry this week that I've probably kept for far too long, both necklaces... one that was perhaps the most impulsive piece of jewelry I've ever purchased back in college, the other the one most thought about about that girl recently blogged about. Only one of the two was kept, the other not, both somehow acts of hope in my heart.  What we hold on to things says something about us to me. This is especially true of sentimental things or "practical things" that we've never used whether that be in the kitchen, the garage, any room really. I think what we choose to keep, what we can't imagine getting rid of, shows something about our nostalgia or a way we hold onto a vision, a hope that the better version of ourselves will actually use those things when we get there somehow.

If you're with me this long, you've probably realized what the blog has been in many ways, a way to hide in public which people judge as honesty. I am not sure that honesty judgement is entirely since some things are easier to share here than would be eye to eye but if you've got a damaged memory, actually lying is an even worse idea than usual. A few people with sharp intellect have noticed that "the guy in the media" is a little more polished than the one here, I assure you I'm not the one who did the polishing. Obviously during interviews you try to stay sharp with but that's a different relationship than the best ones... because aren't the best relationships the ones where you can talk for hours, where you call at the end of the day just to talk about nothing. They are also the kind of people that you love being around without a word without a sound and you realize they're really something.

But the question continues to pop if the Gusher marathon is still my favorite race. The answer is no, it wasn't for long, because for me my favorite race is always the next one. For me this race happens to be Head for the Cure in Kansas City this Sunday. I've been asked to speak and again in my speeches I always try to change it up to something relevant (elementary crowds, high school crowds, college crowds, running crowds, medical crowds are very different and yet all human and so connected in someway). It is perhaps my favorite compliment from a place that has invited me back 3 years, a college pre med professor at the University of Texas. It wasn't that his students said something but that his TA said, he's gotten better every year... it doesn't feel that way with the nerves in front of a crowd but it's awfully nice of her to say. But the crowd is one whose there to raise money for brain cancer research. A standard line which I only used in front of cancer crowds till this year was "Statistically speaking, I'm not likely to make 40. But my math teacher used to say statistics are like bikinis, what they reveal is interesting but what they conceal is vital." While I've tweaked what I said after that in many ways, this weekend is a new one "There are too many of us here who are in memory of someone to deny some horrible statistics but the work we do here will defy those, hopefully change them and the fact that we keep moving will help us look better in bikinis." I hope that's well received as I fly into Missouri and hope for good company. (I wonder if anyone reading this skips my speeches since I always give the best punch lines away in my blog in advance?!? Or maybe they skip them because the punch lines were that bad to begin with).

And not too long after that, what to me is an even bigger sign of progress. From my first marathon period to my first one behind her was 4 years. From my first 5k as an adult to my first one beside her was 3 years. From my first Spartan to one next to her was a little over 2 years. And I'm not sure it's appropriate to say this about one's little girl but the picture they caught during the spartan, my kid is a bad ass.

And the last weekend in August we will be doing our first trail race. My first and only one was in June and her first one in August will be a little under 3 months apart... It will also be her first 10k. If that's not progress, I don't know what is. All my medals earned on my own are in a box... all the ones earned behind her are hanging in her room. But somehow I couldn't quite treat the first set of medals that we earned side by side in the same way. For the first time ever, I got a medal hanger showing the two steps that have gotten us this far, we train and believe together. I'm not a guy who goes far into the past so I didn't open up the box with old medals but these two and any we earn from  here forward will hang there, right in the living room, the common area, reminding us of our shared time and space.

I imagine that E60 reruns are over though theoretically it will be online sometime in the future. I know that reruns can matter. In fact my favorite TV show, Doctor Who, is one that I got introduced due to PBS reruns on a day I needed to iron. (Speaking of the two, I noticed that one of my favorite episodes-one of 3 tv shows I've ever purchased-Listen Season 8.4 aired on the same date as the E60 piece 8/4.) It's one of my favorite because a comment someone from church said to me was that I seemed poised during my interview. I've been called that and stoic before races, speeches, medical appointments and certain relationships with anyone I love and am wondering just how badly I'm screwing it up. That idea that I'm without emotion, well it's not true at all. Before each and everyone of those if I had to pick one word to describe my emotional state, it wouldn't even be nervous, it would be scared. Very scared often and it's questionable whether the perception of success or failure would be the bigger relief to those fears. But as I sit there scared, I try to remember the speech he gives a scared little boy, pretty much what I have been for the better part of 5 years:

Let me tell you about scared. Your heart is beating so hard, I can feel it through your hands. There's so much blood and oxygen pumping through your brain, it's like rocket fuel. Right now, you could run faster and you can fight harder, you could jump higher than ever in your life. And you're so alert, it's like you can slow down time. What's wrong with scared? Scared is a super power. It's your super power. There is danger is this room, and guess what? It's you! 

And sometimes that superpower gets you through at least till the next scary moment... See, sitting through so many doctors appointments has never made them normal, at least not to me. Most (all?) of us are unaware of our mortality at a young age and then as we get older, we're in denial of it some of us literally to the point of death. But when you've sat through all the medical appointments I have and when you're on maximum medication cause of a damaged brain, I am not capable of compartmentalize or not face the reality that I'm going to die. But in that next race, that next speech, that next day, I am thankful that I've gotten to defy it one more time and that day, today, becomes my favorite and I work as hard as I know how at making sure it's not a rerun.




Thursday, August 13, 2015

Search While Moving

You can be certain than any entry I write past midnight is nothing more and nothing less than a damaged brain which can't find sleep. It is not an attempt at eloquence or inspiration but rather what it's always been and says right up top, an incredibly raw and uncensored blog of how a guy hopes and hopes with brain cancer and life changes. I imagine my days of sleeping with the media are over and you look back and wonder whether their portrayal or the way you see yourself, which one is more inaccurate? Which one is the one that's being more artistic in their license of not letting facts get in the way of a good story?

There have been many kind words sent from all over... I don't know how to take the compliments. I know when kids learn to take one foot in front of the other without help we clap for them. When they learn to be a little less self absorbed and share life instead of living for themselves we know they're growing and growing up. But if when you are an adult and you sit and take those entirely for yourself and live for yourselves, isn't that the very definition of what cancer does? So how do you say thanks for praising me for things my 8 year old daughter has been doing right for years?

I was out running a watch free run for me with a friend yesterday on the trail. He couldn't get his watch to work as we started and it would take half a mile before the GPS signal came in and started telling us our distance and speed. He said he doesn't like that the watch takes longer unless he's sitting there doing nothing and he wished it did a better job of searching while it was moving. It took a millisecond for me to realize that's all I've been doing all along... searching while moving, uncertain what I'm searching for, uncertain where I'm going.

I was organizing some old pictures of many things and memories flooded from the last few years. Coincidentally I found the very last picture that someone took of Kiana and I a couple of weeks before the seizure... before I'd be the guy known by the scars. I think her smile is fuller now, mine's somehow both happier and sadder than it was then.

I finally caught some of the E60 piece while someone had me a bit trapped... I don't know what to say about the media pieces but was intrigued by the title, Remember Me... on the title alone I've already addressed that.  I'll let people who speak to their overall impression with that but there were pictures there of the person who I once thought I'd live and die next to, Kiana's mother. It was a bit surreal to see that but a few years removed only somewhat uncomfortable. There have been times where you feel the strong abandonment emotions, where you're tempted to vilify someone a bit more, but you recognize that when push comes to shove, if people aren't there when you feel you want them or need them, then maybe they weren't there all along. Plus we all find a way to justify our actions far too many times and when anyone lets me down, I try to justify theirs. They asked a question about it during the interview and I blew it off...

Perhaps because it was more recent, perhaps because she wished me a happy birthday, I found pictures of a girl I absolutely fell for since that break up; is she the one who the George Clooney girl label most aptly applies to or the one who it least applies to? Saying I love you is something I rarely do, one of the few places where I use my resolution to bite my tongue.  But she was someone I said it to. She was a girl who literally had no plans to do a race that I got her a bib too with less than 24 hours notice but she did it anyway, untrained, uncertain but finished beautiful and smiling. It was a race like too many of my races where there had to be interactions with my thoughts about cameras and the only reason I was able to breathe and sound relatively calm was because she wasn't too far behind the camera. Funny a picture caught on her phone (or was it my phone) that she took meant more to me than any media piece has... But she left more unexpectedly than I had hoped,  and you sit there and wonder how disappointed you are may well show just how damaged you started. You try to remember that your brain performed better measurably... and while people want to believe you can do everything yourself, the human system, the universe itself shows that the right balance and connections are what creates the best life itself. And in your frustration and sadness and anger, you wonder if she was a bigger disappointment than that last heartbreak because whatever you criticize about her, she knew what she was signing up for at the beginning and left anyway... but you look back and realize that race she did last second was a great memory even if it will always be associated with that kiss you had after the race. That relationship which gave you hope when hope was gone ended to quickly but aren't all good relationships that end much too short when they end? But what about that moment where she made the cameras seem irrelevant, was what made you love her? Still would any of those moments have even happened without cancer, was that relationship just one more cancerous element in your life? And you feel the disappointment, even if you try to forget or pretend to yourself that you hate her, you know that's just misguided emotion and a poor use of energy...besides isn't hate too strong of an emotion to waste on someone you don't like? So you justify it in that she's moved apartments in a very short time, she's still just landing at a new stage in life and you were just interesting to her as a passing fad till she realized and found where she belonged even if you never get to share it much. And somewhere quietly happily and sadly you hope she always does well.

So perhaps looking through pictures for too long of things gone by is not the way to do it at midnight. But when you're seeing a media piece that feels more like a retrospective slideshow than any future hope... Anyway, I was actually prepared for some of the stuff that came day... there's always nice messages and good people you connect with both some who find you from past lives, and strangers who quickly become friends. There's always quack jobs who tell me if I eat something 14 times a day or eat/smoke more marijuana, you'll be cured in 2 weeks, 6 months etc. Though this is the first major media piece that hasn't resulted in a marriage proposal from a stranger (there were 3 girls and one guy from one media piece, my favorite one of a federal worker from Florida whose social media profile was her holding a huge shotgun giving a whole new definition to a shotgun wedding) so I guess e60 failed me ;).

What I was not prepared for actually is one of the things that's been keeping me up. What I was not prepared for was a phone call from a friend who got diagnosed with a brain tumor a few hours before it aired. I wasn't planning on watching it that night anyway but that would have made it impossible. He's still in the middle of the bunch of tests. It occurs to me that I've met far too many people with brain tumors most by conscious decision to be active in this community but this is the first in my life of someone who I met who got a brain tumor after I met them. They've been getting lots of calls. It's funny he reminds me of some of the initial stuff, he's staying at work as long as possible, staying with life. I literally worked till the day before I headed to Duke.

I had snuck out of the hospital to go running, put off brain surgery to run a marathon, I'd run till the day before I checked in and walked furiously around the hall with an IV in my arm. I've kept searching and kept moving... maybe that's what I'll do till my dying day. I had some unexpected visits with my neuro oncologist and my neuro psychologists this week but while we've got a follow up in two weeks, I also signed up for a race about a year away, the longest outlying thing I've put on my calendar since surgery...  So I'll keep searching and keep moving...

Monday, August 10, 2015

Dreams From My Father

There have been errors in media pieces about me... Early on in the process someone gave me the sage advice that it's probably wisest to stay away from watching or reading them and certainly from reading the online comments in the modern age. I have done so both to keep a perspective that an single dad with brain cancer deserves little if any praise for loving his kid while putting one foot in front of the other.

The early factual errors ranged that the marathon was the first marathon I ever ran or one of many marathons I'd won or one of several I'd done with a stroller, that I didn't start running till cancer. For the record I have ran my whole life, ran many races with Kiana, won only two ever with a stroller, a half and a full marathon. These types of errors or many other details are inconsequential to both history and my future life so I've never felt the need to address them since ultimately I don't care.


The E60 piece corrected all that and told the story more

broadly. As is likely no surprise I was out running while it was airing since it would feel weird to watch but my family was watching it and a few friends in a few places had watch parties (if you haven't see it and wish to, it will apparently be online in due time). I am humbled and amazed by both people I know and people I'm meeting and the kind words they've shared. I have some friends who are focused on details and have picked out some things that could have used better fact checking but only one stands out to me as something that absolutely has to be corrected especially by me. 

I have no idea how decisions about editing media pieces get made. They interviewed two friends and two doctors and my mother and Kiana. Only they and I apparently made it in.  I have no complaints about my mother and daughter being the stars of

the piece or my life since they are the woman and the little girl who are still raising a kid with a damaged brain remembering them with each beat of my heart. In simple honesty my hope was those others would be pointed out because I woke up from a seizure with Sean. Todd, another is the executor of my will so I'm literally entrusting him with many things if anything were to go wrong. The doctors are ones I whose hands I have placed my life. Thanks to each and every one of them I believe I've gotten at least a few more years and a lot more quality of life. Perhaps ESPN got it right in the narrative they chose for their medium and their time frame but here in mine let me say thank you to those heroes of mine.

However, the correction I need to make is that there was a reference made in the piece apparently about my mother being a single mother of 3. There were zero days of my life or hers that was true. I've written about the ESPN interactions and contract many times and so I know this project went through many producers hands and got dragged out over two years so it would be easy to pass the buck and say it was their fault. I do not think that's correct, I believe the fault is mine. It is perhaps that if my daughter and mother are the stars, there was someone who was the lights and sound. And the lights and sound we usually don't notice except if they get something wrong. I've gone too much of my life without noticing because nothing has ever really gone wrong. 

You see Ascencion "Chon" came into my life when I was 8. He married my mother and is my little

brother's biological father. It wasn't long after my mother took his last name, Leon, it would also become mine. It's the Spanish word for lion and that creature and a cub are tattooed on me to represent me and Kiana. A drawing I love of it is currently one of my social media profile pics. I was born a Leo and my high mascot was the lions so perhaps this was the universe connecting some key points.

There was never a single time he called me his step son, it was always mi hijo or my name. If there was a single time where his attention and affection was different for the one son who shared his genes and those who came by marriage, I never noticed it. He was the vision of what Hispanic fathers, myself included, were expected or dreamed of to be: a quiet stoic provider who provided discipline as necessary and affection in a quiet contained manner.  Perhaps we've raised the bar since then but he was hitting that one and more which is praiseworthy.


When I turned 15 I met my biological father, adolescence has enough identity issues for most of us and this certainly caused some internal confusion. For the first time in my life and for far too many years, I stopped calling him "Papa." I would use his proper name or skip addressing him altogether. Here was a guy who had done right by me all along and this was beyond adolescence independent
rebellion. It was just wrong.

I was not living at home then nor have I ever gone back for an extended stay. So the fact that my space was hours away created far too easy of an escape. Like at all points, he provided in many ways including a quiet presence that was there everytime I can imagine. At my high school graduation, I was a condescending kid who thought since they'd never gone to college and I was going to, I obviously had to be smarter. He hugged me just as tight and meaningfully as anyone with a triple Ph.D ever could hug anyone. I'm 35 years old and he's 70 and he's still working and I am not... Tell me again what that college diploma achieved that his hands haven't outdone?

It's been an interesting ride though though I believe my days of the media trying to get to know me
are over now, right? I know in those venues, we commend those whose eloquence or drama or presence sits well but perhaps us extreme extroverts should be quiet more often and listen to the wisdom in the quietness of guys like my dad. They save their smiles and words that like some of things with more rarity therefore have more meaning and value. One of the biggest ones I saw was when he was there shortly after Kiana was born. It's a fair question as to whether he or I was beaming more that day.

Like incredibly dependable lights and sound, his presence blinked less than statues. I know the flashing and new gets plenty of attention but there's something to be said for solid dependable structures. The first race that I did with a stroller was to get my mom to do her first half marathon at age 60. I'd finish second and go back and finish with my mom. It was a miserably cold weather day; there'd be a newspaper article about me, Kiana and my mom. He would go unmentioned but guess who it was that made sure we were safe at the beginning, in the middle and who it was that kept Kiana safe and warm while I went back to finish with my mom. Only one of the wonders of the ancient world remain and I'm guessing it was built by guys like him.

On the day I had a seizure and would start the brain cancer journey, he was there at the hospital a few hours later. My mom was worried and expressing it freely... I tried to calm her and myself down. He succeeded with both.

And when he had built enough faith in mine and my mother's and Kiana's abilities to do races on our own, he went from guardian to participant. I was proud of my mom for doing her first race at age 60 (I mean 29). I was proud of Kiana doing her first 5k at age 7, and my brother for his first race in his 20's. My dad finally joined us just a few months shy of his 70th birthday and finished it with a solid sprint and would get faster the next month and the month after that. ESPN was actually filming that last race though I guess the 4 of us finishing didn't make the piece, I may have been too late to the party to get it on camera but very grateful I got it in life.

This year we had a surprise 70th birthday party for him. I was originally going to skip it because he's built like me, fairly uncomfortable in receiving attention for the mere act of staying alive and certainly uncomfortable with parties thrown for it. Someone I love kept insisting I should go, that it would mean a lot to him. In the end, I went and hugged him and told him some of the things in here though not nearly enough and certainly awkwardly because you know father to son appreciation is somehow still not manly for those of us who are insecure. Like myself he hadn't had many birthday parties in a poor childhood but I've smiled big at many parties and many pinatas, but I'm fairly certain that seeing him hold that stick and swinging at 70 elicited the biggest smile I've ever given at that type of event.

Again on father's day, someone I love reached out to me and wished me a happy day. Uncomfortable in receiving praise for something that took cancer to get me right, I pretended that father's day wasn't a deal but fortunately channeled that discomfort into passing it onto him. That way we could be uncomfortable and yet awkwardly happy together in receiving positive feedback.

But he has been there for far longer than I have acknowledged to anyone, myself included. We've had very few long conversations perhaps why each of them are so memorable. The latest most prominent one  is where he spoke specifically about me being more open to a relationship at this stage in my life, despite the most painful break up of my life which was connected in that ESPN piece, one which would make you wonder if there was such a thing as false hope. He'd gently and yet strongly reminded me that the universe cannot provide things we are not open to. He had changed jobs, life, and literally country putting his friends and family far away to give himself, his wife me and my brothers a new chance with love of family as the centerpiece. It's hard to make an argument that there's no one like that in all of time and spice when the guy saying that has done it in both conversation and in real life.

The title from this blog is plagiarized from President Obama's book. He recognized far too late that he'd written a book about the absence in his life, his father and not recognized the presence, his mother. He said things about her when she died that he realized should have been said while she was alive. I've gotten a little more fortunate that someone from ESPN gave me a better look inside my own mind and household while we were all still standing.

My fastest times from the mile to the marathon have all been within the last 12 months. But it takes a cursory look at professional athletes to know that in all likelihood I am somewhere near my peak. Still in the first edited video I was ever a part of, I said what will likely be the smartest thing I say my entire life, "you have to work on the relationships you want to keep." Beauty, athleticism, and so many parts of life inevitably fade but almost always with focus and work and desire, two willing parties can make relationships better.

I can't imagine that this blog will ever get the attention that the E60 piece did but still, I wrote it to say thank you to the guy who came into my life and gave me his attention. Thanks dad.


Sunday, August 9, 2015

This is How We Party

I have been fortunate enough to do many Spartans in many places. There's even been videos made of them (one of the land and two by the sea). However the first Spartan, Alexander Nicholas, was a race where I was guided by a stranger whose become a good friend since and that kindness was contagious. There's been cousins, good friends, lovely ladies who I've joined for at least the cheering section of the course if not more. Last year in his hometown it was my little brother David's first race of any type and when it was announced that in 2015 it would fall on my birthday, he said he wanted me back, this is how we would party. I told him that I didn't think that far ahead but he never gave up on the dream.

A couple of cousins who had cheered last year were signed up, the first females in my family to sign up for a Spartan. Kiana had decided to try to do the adult version this time (not officially allowed till you're 14... Always a bright idea when you do something questionable to have it visible on the Internet?). I both questioned and praised the decision because of how rough her first kids Spartan had gone.

I had the advantage that I was doing the elite heat before so I was more in scope it out for Kiana mode than race mode because of that.  Still, I'm not a guy who celebrates his birthday much (though I celebrate being alive everyday). But I was born 8/8/80 turned 8 on 8/8/88 and here I got to do my first race ever on my birthday with bib #8 with several family members and friends and my daughter at 8 years old. I mean how lucky can one guy be?

Luckier than I could have ever imagined! Coincidentally this race had every obstacle I missed on my first spartan a little over two years ago and the one I most recently missed in June. On this course, I got them all! I did miss one and the course had an obstacle that required 5 burpees so I ended up doing 35 burpees on my 35th birthday... That seemed right in its own way. I finished just in time to head over to the heat my family was lining up to do and Kiana and I snuck into the back. About half of the crew it was their first time doing one and I heckled them that Kiana was going to beat us all. Either way I was going to smile at the end because the number of friends and family I keep doing races with keeps growing.

It was a tough hill and a thick crowd so it was a slow start up and a steep dusty descent after with Kiana realizing quickly that it was very different than the road races we've done together. My parenting philosophy is first you gotta give kids roots than you gotta give them wings... So attempting to be one of those first flying lessons, I told her that with each obstacle, I would be with her but I'd only help if asked. First jump in and out cold water mud pits she gets in and gets out fast... Sandbag carry, carries the bag up a hill, across it, and down it entirely by herself. The log carry I had to help not sure if it was because of the weight or the fact that it was about her size. Still there was a little wall and a cargo net that she literally climbed up and went over down faster than the adult next to her did or could have (oh wait that was me).

We were about halfway done when she said to me, thanks dad for letting me do the adult version. I told her we got a long way to go, let's see if you still feel that way at the end. She said okay but I don't think I'll change my mind. The spear throw was the first obstacle I would have to do entirely for her though the deal was if I missed it she had to do the burpees... I nailed it. In strict running we talk about hitting the wall... In Spartans we go over them and this time they had a six foot wall, followed immediately by a 7 ft wall, followed immediately by an 8 ft wall. I propped her up on the first two and before I could get to the other side she had let herself go down. She did the same with the 7 foot wall. I asked her to at least wait till I was on the other side on the 8 foot one before she let herself down since her fearlessness continues to scare me.

She went under the barbed wire with conviction, far more than I ever have and that's where we passed my brother and cousin who had been ahead of us. Some people get their favorite icing for their birthday; mine was definitely seeing people I love being covered in mud. The first time I did the tyrolean traverse I fell... Kiana did not, she made it look easy. She did the same with the traverse wall where I did the best I could using my hands to replicate the bottoms as the footholds. It was at that point that she said no matter how much longer we've got or what the obstacles are, I am happy we are doing the grown up one together. There must have been some mud that got stuck in my eye earlier from the course that I had to spend a few seconds getting out at that point in the course cause why else would I have been wiping my eyes?

The one obstacle that I supposed she skipped all together was the bucket carry since it was almost her height and carrying that full of rocks was not realistic. Still since teamwork is allowed in the open heats we took one with minimal rocks at the bottom and Kiana standing on top of them.  I don't know if the carry is more or less than the better part of 60 lbs Kiana weighs, but I'm not sure I'll ever have any other bucket carry that warms my heart by hugging me again so I am not sure I'd even call that an obstacle.

Still as the course was wrapping up, it was clear that my heckling of Kiana beating us all was going to be correct and we got to the last obstacle, the rope climb. Kiana has climbed a rope before but not one that high, nor while both her and the rope were wet, nor at the end of her longest race. I went in just worried at the bottom I'd have to catch her. She stopped about two thirds of the way and I said as calmly as I could, look, its okay to come down, we can just do burpees. She looked down at me (probably in more ways than one) and said look I'm just taking a breath okay. She then looked back up and climbed all the way to the top and rang the bell. I didn't realize she had gathered a small audience and when she rang it she got clapped and cheered for more than I ever have at any obstacle. I didn't join in the clapping cause my arms were still extended just in case but I cheered my heart out.

I have done races and gone back and finished with people many times. Usually when they complete their race, I place their medal on them, understanding in a great way that it really is better to give than to receive. It's a special moment where you get to encapsulate and well hand out happiness. On races Kiana had been in a stroller I'd take my medal and place it on her neck each time. There's been races I've done next to her where she got a medal and I didn't cause it was a kid's race or she'd placed in her age group. However on this race I had purposely not taken the medal at the elite heat and for the first time ever Kiana and I received our medals side by side for both having done a course. Kiana has a thing against having favorite in most things but she turned and said to me, "you know how I didn't have a favorite medal, I do now, this one's the best one." I had to wipe that doggone mud out of my eyes again.

We would cheer the rest of the family and friends in, watching them succeed in their own way even if sometimes it was against the obstacles or earning them with burpees. Kiana and I would sit and chat with other friends including some who have been and will be part of my spartan charity team. But there was a very humbling moment when Amelia Boone's mother came and spoke to me. Here was the mother of Amelia, great person who is also a great attorney, current cover of Runners world, and who has won both the world Spartan championship and the world's toughest Mudder. She comes up and says that the way I approach life and parenting was inspiring. I hugged her and said that if I did a fraction of the job she did, I would be very proud.

There would be more finishers and muddy hugs, drinks and medals, stories and calls, pictures and social media as we tried to encapsulate the memories. I sat reflecting officially one year older knowing that each day above ground is a good one in my book. But with some of it over obstacles, some of it underwater, knowing that this birthday where my brain had gotten a little reminder of the right frame of heart, well those reminders of the privilege of being there to celebrate life were gr8!





Friday, July 31, 2015

Compartmentalization and Punctuation Marks

Well... it took over two years but it appears the ESPN piece will finally air, there's even a preview. I should say that with excitement but it's mostly relief. While the crews did a fantastic job of being non invasive, there were odd moments. I left when they were setting up and tearing down since your house being set up with many cameras and lights is weird...

There have been cameras in my house too many times (I hope and believe that one last March will be the last). People ask why I don't watch most of the pieces, thinking that me not caring is out of modesty. That's entirely incorrect because while they're highlighting some of the things I corrected but hanging out with my kid in the way I do and running to capacity are things I should have always gotten right. Still the most fascinating thing with working with these crews for me has always been when the cameras are off and how we interact with each other then. There is an old saying that someone who is nice to you but isn't nice to the waitress is not a nice person... I went to eat with all of the ESPN crews; they were all nice to the waitress.

So this process has taken over two years, not because the story has changed but because I inspire people to leave working on E60. The first producer was the one who got me to accept doing this (believe it or not I blew off more people than I accepted back when I won Gusher cause a) it was overwhelming b) the story was already out there so what else was there to tell). It might have helped that someone from Livestrong and one of my Doctors from Duke encouraged me to do so in order to encourage others, the obligation of the cured as we call it in this community (I've given up on objecting because I'm not cured). But apparently the reason it dragged out is that until very late in the process it is the producer who does all the work and if they happen to leave the story gets shelved until another producer picks it up.

There is actually something I like about E60 right from the beginning is that their shows apparently end without any credits to any of their staff, a nod to the idea that the stories are always more important than the story tellers, the subject more important than the author. A simple look at multiple accounts of events or multiple photographs of a single thing would of course reveal that both are important but I think that shows humility on their part. So with that said, well, let's just leave the formal names out of those I worked with but I still want to give the two I worked with most a thank you's in my own way, here in this blog because no matter how the piece comes out, I appreciated their person.

The first producer and I actually met for the first time without Kiana. It was at an appointment in Duke (Kiana's never been to any of those appointments and shy of her going to school there, I'm okay with never going to Duke again). Like each one of the producers, she filmed some things herself with most being the crew. The simple truth is that what came out of her filming were some shots of a race that I would take second in, a friend who passed away from brain cancer when I did the Boston marathon this year. ESPN's 3rd producer (we'll come back to her) was kind enough to edit some of that and send it which the family appreciated and which I previously wrote about. But that 1st producer somehow in the middle of a custody battle about how I shouldn't be the guardian of my daughter because of the seizures, and a man who still had much frustration and disappointment about having gotten left shortly after brain surgery, she still saw that somewhere in a broken heart where the few remnants were being poured into raising a child, there lived a hopeless romantic, perhaps a hopeful one. We sat and talked on the sidelines of medical appointments, races and ultimate frisbee with no cameras rolling sometimes. I had next to no response to perhaps the most personal and yet professional redirect she gave me about how I could do better than the George Clooney approach in an approach to love. The piece would get shelved for a while because she left E60... it would turn out she left it to get married and move far away. While somewhat personally annoyed that meant the media stuff would drag out a little longer since it's a seasonal show and some things would have to get updated, I remembered that conversation when I heard about it and was happy for her that in the scheme of life, she clearly put love over anything else and it was easier to understand why she'd been the one who had talked me to be part of these stories.

I would meet a couple of other producers in races on the east coast but it literally was one meal. One
was covering for another. The other was going to be the one picking up the story but she apparently got accepted to law school and also left the show. I don't know whether the 3rd producer knew all of this but the very first thing I said to her when we spoke was whether she was applying to law school or getting engaged anytime soon... yep that's how smooth of an entrance I make. She stuck out for many reasons and there have certainly been other reporters Kiana's been very happy and comfortable with but none quite like her. She would mention that she helps out in the children's ministry at her church but which one's the chicken and which one's the egg with her skills with kids we just don't know. If anywhere Kiana comes out relaxed in front of the camera during the interview, it's because she was behind it. Kiana and I had some fun during one of the tapings in which I rode her bike while she ran (it's usually the opposite). The last ESPN producer would sit on her bike just for kicks. She made such a strong impression that the last time Kiana talked to her she asked when she would come visit sometime without the camera crew. They both had been kind enough to read portions of this blog and realized that someone else would have to do the scripting for the story to be told properly. The last producer was writing so much during certain times I was wondering if she was writing my entire life story.

There are certain jobs both of which I've held and had to work with that require compartmentalization. The doctors and nurses I deal with, the camera crews, me being a juvenile probation officer, you have to be able to both disconnect to have any level of effectiveness. Still, the doctor I remember the most from when this all started is the only one that came to cheer me on in the marathon I put off brain surgery for. The nurse that struck a thankful cord was the one who came to my house to deliver something because when I had a driving restriction and it was really bad weather; they knew I'd be stubborn enough to try to get it myself. The neurosurgeon I chose said to me about surgery, I might kill you because if I died on surgery day it wasn't cancer, it was human error. Three of the reporters have been kind enough to come cheer at local races long after the official story was done. One of the camera crews insisted on cleaning the dishes after my mom made them dinner. Another one as we awaited MRI results, a guy who described himself as jaded from having done all this type of work, threw up in nervousness that these MRI results that he was about to tape would be bad news.  In my ever brave/cowardly way I go to too many of these appointments alone, one of those crews hugged me at one of those medical appointments and it's the only time I remember breathing during a medical appointment while I relaxed into their arms for a microsecond. If there's any reason these pieces capture any goodness or any humanity, it's because these were incredibly good humans when they stepped out from behind the cameras.

I don't know why other people tell stories to media... I don't quite understand the desire to be appreciated by strangers. I mean that's not exactly correct; I know and understand that impressing strangers matters a lot in certain situations. Some we call college admissions applications, others we call resume. I also know if you're trying to please everyone there's something wrong with you; if you're trying to please no one there's something wrong with you. But strangers across the tv screen... I don't... I don't quite get it for me because I'm doing nothing more than something I should have done all along which was love with all the conviction I've got. Trust me, I get the other stuff E60 does pieces on like professional athletes who should have their stories told both because of their physical abilities and the way they choose to utilize them for the field and often off the field with causes. I am average or slightly above average in any of those areas so when people ask why I have no good answer other than must be a slow news day.

Still, if given a platform, I have one core message, love it out. Showing the people who you love exactly that is a lot more important than impressing strangers in my book. I mean what's the point of impressing a bunch of strangers so that they can go tell the people they love about you if you come home alone? With that said, even with a damaged brain, I am no complete dummy. It is no coincidence that the races any media pieces have been invited to were ones were I was running a race that highlighted some good things and/or where I was running with a team that mattered. Four of the races where I have helped raise money for brain cancer research were ones they filmed, four of the other ones are entirely local races that benefit good things (this is the first time it occurs to me but of course they filmed 8 races). And every outfit of mine picked for the video was at least a wink or a nod or a smile (Kiana wore whatever she wanted).

So I hope this will be how I keep living... The title of this blog comes from that hopefully this is the end of the media stage since there will be nothing left to cover. It will go from being one ellipses to another. The compartmentalization of parentheses of when the cameras are or aren't rolling... the ellipses of when is this going to end (much like anyone whose gotten this far is thinking about this blog). I actually like Spanish punctuation better than English equivalent (apologies to Donald Trump?). There the question marks and exclamation points right at the beginning and the end of sentences ¿, ¡ because there are parts of life and communication that you are aware you want an answer even as you start saying it and other's you're excited long before the final word. The question mark of the ESPN piece is finally coming to a conclusion... It will air August 4th and be online three weeks after that. The question marks of cancer will likely keep hanging on but we will hopefully keep having some good periods, ellipses, occasional compartmentalization and definitely some exclamation marks. It is perhaps how I deal with the question marks.

Tuesday, July 28, 2015

Not So Lonely At The Top

Once several years ago, I woke up in an ambulance and a few weeks later I'd be heading to Duke, a place I'd never been, to get brain surgery and stay with strangers all because of how relevant cancer had become in my life... So when an opportunity came to travel with First Descents, I questioned it. I mean here was an opportunity to be in a place I'd never been, New Hampshire to do something I'd never seriously done, rock climbing with people I'd never met because of cancer... I've not really felt the need for a vacation ever but a trip that would suspend the cancer label for a bit would have been a way to catch my breath and this seemed like that opportunity or the complete opposite. But perhaps I dared dream it would be one of those moments where the universe dares to balance itself out.

So arriving and getting transported to the airport the first thing we had to do was figure out a nickname since at camp you have to be too cool to use your real name. Nicknames are always a fascinating thing for me... it's a way that we make things slightly more our own, sometimes out of affection, sometimes out of fear. I've met people on this journey who have named their tumors with names that range on the deranged to the sad to the comical. I thought about using one of my existing nicknames but in the end took on the drink I've only ever drank in reaction to cancer, since when getting out of the hospital they told me I should give up caffeine or alcohol, I asked if I could have rum and coke since they'd cancel each other out. Anytime some significant good or stable news comes about the tumor, I go and have one (always with Mexican coke for the record). This worried one person that thought the nicknames should be away from the diagnosis but rum & coke is exactly a way to be reminded I was away. 

There would be nicknames far more clever, from Vienna to Maps to Ruh-Ruh to Helix. The group had a variety of diversity in backgrounds and personalities but it apparently had some exceptions that were comforting to me. Apparently the camps are often primarily or entirely female and we had 3 out of the 10 participants as males. Brain cancer is a rarity in the community and yet 4 of the 10 participants were in my camp, with 2 of us still having some of the tumor present. This information made me nervous on that first day because I hadn't come here to climb, that was just a side benefit, I'd come here to feel normal in someway for at least a few days and wondered if these factors would make it less so.

Still with over a dozen of people staying in one house, sharing every meal, and campfires, there would be concerns shared. The youngest participant was 18 and was worried that with a bunch of cancer survivors their idea of rock climbing was going up one big rock that you could step off... I wondered about the physicality challenge. There were jokes and tears about losses, gains, realizations, reflections, some of which I shared, some of which seemed to be simple attempts at trying to make sense of the senselessness of cancer. There would be new coping mechanisms I'd not seen along my cancer journey but it was refreshing that almost no one had ever really been rock climbing before which made them my kind of people, people who sign up for new challenges consciously make the ones they didn't sign up for a little easier to rise up to.

Three awards were passed out everynight, a pair of wings for whoever had been nicest so that they could spread their anti-douche dust, a little skirt for off the wall accomplishments to show how to be impressive on their, and a superman cape to show who had accomplished the most on the wall. I was the first recipient for the superman cape which meant I had to wear it the entire next day during climbing and pass it on. Climbing is not my forte but with a cape it was a whole new game to be doing that and keeping an eye on who it was. But somehow between the climbing and the camaraderie, it was really on the second day where cancer diagnosis fades further into irrelevancy as we got to be normal climbing rookies, sharing a wall, ropes, hugs and high fives.  Smiles and tears often spoke of facing fears of heights and falling and for all of us literally going above expectations. I passed on the cape at the end of the day to someone who had gotten higher than she expected, cried at the end of going hallway up but immediately after going down helped belay (some fancy word for holding someone's rope as security while they climb). She finished the day by going all the way to the top. The Superman cape had been given to me for climbing the most but when passing it on I remembered that what made him a hero was that he was helping others even as he rose higher. She exemplified that incredibly well. 

The third day was a "break day" where we'd take a steep hike up to a mountain top but all walkable. It was the slowest of all the days, not my typical style, so I tried to calm it down by having it be the only day I started with a speed running workout. Still as we climbed and chatted, it was the day with the biggest variety of one on one stories I got to hear. And individually in a more full way I'd hear about people's jobs, relationships, dreams and that one on one humanity was very much appreciated. In my book, it was a good reminder that being just human makes you extraordinary if you enjoy those ordinary moments a little extra. When we all got to the top, we took a group picture reminding me of where today's title comes from, that sometimes going up together at each other's pace or with stops to let each other comes up, that it never really has to be lonely even at the top. 

The 4th and 5th days were by far the hardest physically with steeper and longer climbs. It would be over a thousand feet of climbing one day and the steepest climbing the other. We were partnered up with one other camper and one guide continuing in a different tone, more one on one time. It was incredibly physically challenging and the only time I fell with a rope there to catch me... my heart was pounding and it took other''s encouragement to keep going up but we got to the top.  


Between those two days there was actually an exercise where we went to a creek and wrote down on two rocks very different topics. On one it was supposed to be what you wanted to leave behind that you'd carried for too long and throw it in the stream. On the other what you wrote what you wanted to make sure to take with you. This exercise was very personal with no one, there at least, showing what they wrote. I personally wrote nothing on either rock because there really is nothing negative left in my life I'm ready to discard... I'm competitive and the few negative things still remain fuel the fire that keeps the fight going. For me those things are sometimes the rocks you kick on your way up to stay afloat on a hard rock. The positive rock was also left blank but it wasn't because there are not many good things in my life that I wanted to take back with me... I'm not sure a tablet the size of the ten commandments could have held that in place. I took an empty white rock to simply serve as a reminder that I came with little knowledge to continue to be open to first experiences, new experiences, perhaps in new places you'd never been with people you'd never met, where for at least a few minutes you remember there's still so much more, so much more that you can do and that on any given day, life may just be a tabula rasa, a place where you're just getting started. 

On the last day we finished on the mountain top together at different speeds but all finishing on the same spot. Some people were chatting, others were playing hacky sack, others quietly taking in the view. I did some of all that while mostly reflecting at one particular moment on the staff. There were the cooks who with health issues of their own had made ridiculously good meals, a song and dance in the kitchen, the house mothers who had cancer connections but would serve in memory. There was the photographer whose wife had died of cancer and used his vacations to volunteer to remember her by catching other people's memories. There were the guides who had a huge range of personalities and paired appropriately among ours, keeping us safe, challenged, some with zen like approaches, some with humor and heckling, some how able to guide sometimes from above, sometimes from below, and sometimes side by side. There were the two counselors who had a way of being connected and connective, both building a relationship you while nurturing the ones that were being built quickly. Still, I couldn't help but reflect that it was all but impossible that we would all or even most us all ever be in the same place again and even if we'd had different speeds, different arrivals, and different departures, it was a special moment or few that we had one all together there. I can't say I wasn't feeling emotional about the goodbyes but in my stoic coping mechanism, I chose to focus on the gratefulness that the hellos had ever happened. 


First descents has a logo in these camps whether they be surfing, kayaking or rock climbing of "Out Living It." I love the double entendre of finding a way to outlive a disease but also that you literally have to be outside to live. I don't know if I'll ever get to do anything again but I am very fortunate to have spent one week living it out there, up there, sharing a rock and life where we'd started together at the bottom and rejoined nowhere near lonely at the top. 

Friday, July 17, 2015

I know where I've been

I got to give the speech that I referenced here yesterday evening. I talked about those awesomely awkward first kisses... someone even caught my duck face that is how I start kisses (this may explain many many things). I tried to use that as a connection point that the first set of medical appointments but how it wore out a little bit of my spirit to sit through a lot of bad firsts that I started to taking too many things and my last. While I handled those intensely and that was commended, between that approach and memory issues, I was missing life because to see things as your last chances there's less desire and capacity to pay attention about learning. As always there a few jokes along the way and I think they were laughing with me, not at me... right? right?!?

I talked about a girl who was the first, honestly the only, girl who kind of resparked an appreciation of some new firsts. Perhaps it was because the romance started shortly after a stable MRI, perhaps because she is an actual writer in her own right (much better than these ramblings on one of those real websites), perhaps because she had heard of me before through the internet and wasn't so convinced that the idea of me needed to be as polished and was nice enough to the actual me, I don't know but I fell for her. She is absolutely the girl who I wish I'd asked and gotten a yes to my old fashioned way of getting a girlfriend for the first time since high school. With that said by any modern standard though it was never done in that official way, if I am honest with others and the man in the mirror, she absolutely was the first and only girlfriend since high school. I'm sure she's too polite or modest to think of it that way but somewhere she figured out she was out of my league and unlike the majority of George Clooney girls, this girl was the one who realized it was better for her to keep her life without us being together. I've tried to figure out how she opened up things in me that I barely knew existed but I just accepted that she is one of those people who bring life to life, who give hope a new ring. It was a good bridge for me to start appreciating firsts again as a place to learn. I think she realized her place in life was better with her on her own path and while there's no bad blood, I honestly don't think we'll ever be actual friends since, for me at least, that might be lonelier. Anyone who thinks I shared this much detail at last night's event thinks there's even more wrong with my brain than there is since that was a room full of strangers and only my friends read this blog ;). 

Still, the event itself was great. It was actually 5 of us speaking with someone sharing about their first time to first base (actual fist base in softball), another sharing about their first time in Indonesia, I was 3rd and shared about how bad I am at first kisses. Oddly enough while I was introduced as a good running dad (and I love both those aspects of my identity, neither of those made my story much. The last two speakers spoke about the parent child relationship or the child parent relationship. The reason we have 5 different speakers is because there's so many different types of people and different types of stories. The old idea, taken from a film oddly enough, that there are millions of people in the world but none of those are people is an extra. We're all the leads of our own stories. 

I imagine different ones spoke to others at various level but the one that struck with me was the person after me, who talked about their first cigarette alone, their first cigarette with their mother who once had discouraged her to not follow in her footsteps, her mother's diagnosis with lung cancer and her literally being there with her mom on her deathbed, facilitating her smoking on the way out. It was an incredibly human story about connections with faults from someone who was there and caused your beginning and you were there for them till their very end.

I actually love story telling events though most of the ones I can relate to are ones told at parties or at meals not at formal story telling events. But the human soul is alway a story teller, even when the rest of our system is shuts down the human mind stays up all night telling itself stories. Perhaps, it was in thinking about a girl so much as I got ready for this speech, perhaps because I went to go see the musical Hairspray for the first time recently, the last couple of nights I'd been dreaming of myself singing. The first time it was cross country music (I'm not sure whether it would be me or the audience who should consider that more of a nightmare). The second time it was me singing to her in Grease. You know it was interesting to realize that John Travolta was in both Hairspray and Grease but the line perhaps that maybe I should have stolen outright about firsts and last that when I got cancer I thought it was the end but it turned out to just be the beginning.

Still, this week, like far too many weeks of my life, I watched someone die of cancer. There are times, many times, where I think about bowing out of being the cancer guy. Sometimes it's because I'm tired of the reminder of what's likely going to be my death. But most of the time, by and large, its because this journey has caused me to meet a ridiculous amount of good people dying of cancer. There have been many cancers but it has been those with with brain cancer, especially those who are younger than me and each of them has had more potential than I could dream of, being robbed not just of life but of youth being exhausting and never recovering. That was one of those kind of deaths this week... Because of sharing my story, other have shared theirs with me but because of the connection point, I've watched more people die in the last 2.5 years than I ever expected to have happen. Let's just say this week, I flipped more tires that day and threw spears harder and carried a bucket longer than I had in a while. And then I went and downloaded a song from Hairspray and realize as long as there's a need and I can help in anyway, I should not, cannot bow out. While the song there is about race, there is a distinct echo in the human spirit about things not being fair due to biology we so often had no say in the matter that keeps us believing that while death may be inevitable and perfection may not be achievable, we still haven't found the better way. 

There's a road 
We've been travelin' 
Lost so many on the way 


But the riches 
Will be plenty 
Worth the price  
The price we had to pay 


'Cause just to sit still 
Would be a sin 


So that's what keeps me going because I know where I've been. This is a far broader approach to life than just cancer or first kisses but those are the ones life has currently handed me to learn to be better at. 

There's some rest spots on the way though I'm not much good for being a bum or taking break. I head to New Hampshire tomorrow. But before I do there's a meeting for the BrainPower5k at my house (if you can find it in your heart and in your pocket to donate, please do so here). And when I arrive I meet with a Livestrong friend who survived cancer but buried his wife from it. And then I head to go rock climbing with some other cancer survivors. There are many many times I miss the concept of me, the guy who never had cancer, whose brain didn't have gaps. And there are times where I find that escape in being Kiana's dad, plenty where running is the therapy but I've never done a trip like this but I hope, I hope that in the longest time I've been only with cancer survivors continuously, you find a slight respite in being oddly normal because even we know to keep going because we know where we've been. I think the legs may well need a rest from racing a few weeks before I turn 35 but I am not the kind of guy that can sit on the beach so my vacation will be trying to go up rocks with friends ahead of me, besides, and waiting to catch me if something goes wrong. The way I'm dreaming that up, my vacation sounds like my life. 

There are people who choose to believe that where we're at is where we're supposed to be. I don't believe that and find it a bit off putting because that suggests things like choices are irrelevant if whatever you got right or wrong leads you to where you're supposed to be. I take responsibility for my choices that got to me where I've been. But I am also dealing with a cancer that has no known dietary, genetic, lifestyle or environmental connections. So I will try to keep appreciating, keep dreaming both in the night and day (is it more likely that I am going to be singing and proposing to girls two days in a row in my dreams or in real life?).  But I hope I keep moving. 

There's a dream, yeah, in the future
There's a struggle that we have yet to win
Use that pride in our hearts to life us up to tomorrow
'Cause to sit still would be a sin