Friday, October 19, 2018

Swept Off My Feet

When your legs don't work like they used to before
And I can't sweep you off of your feet

I've longed quipped off the idiom, 'Before you judge a man, walk a mile in his shoes; that way if he doesn't like your judgement you're a mile away and he can't catch you easily because he's not wearing any shoes.' Trying to understand each other has and always will be important and obviously being able to perfectly do so takes time, effort, creativity. 

Two years ago, I spoke at a politics class at the University of Texas as I have at various times encouraging students to run for some race or another. This one was different in that it was the only time before or since that, at least I noticed, there was a student, Archer, in a wheelchair near the front of the class. I'd stick around for a bit after I was done just to watch the class and he was outspoken and in disagreement with the professor on different sides of the political aisle with no hesitation in sharing those differences. I was in between them politically but I appreciated the kindness in spirit they shared it with. That professor would invite me back to run with some of those students as they prepared for their race and then he'd give me news that Archer had also decided to run the race with the Dr. Sean pushing him for the 10 mile course. Having introduced me as the guy who'd won a marathon with a stroller, I would help with some of the pushing but Sean did most of it with me just clearing the path. I appreciated Archer better as a person but was still missing plenty of perspective. 

Last year, Archer started a program called Archer's challenge where some UT Professors, some movie theater staff did a portion of their workday in a wheelchair so they could understand. They reached out to athletic groups to do a 4 team relay of doing a running route that was about a 5k. I put together a team that had the right attitude and competitiveness but it was on a trail where my main focus ended up being on doing it without using my legs in anyway but also trying to pass people. My main appreciation of it was when crossing the street onto the trail in regards to traffic and mostly how much work my upper body still need. I even thought that well if my brain tumor ever affects more if I can be a little less dependent I may hang on longer. It was less than 20 minutes of a glimpse of Archer's life but I appreciated him even more. 

This year when Archer's challenge came up, rather than putting it off on a closed running route, they decided to let people explore the area around City Hall at their own pace. This time I had decided to do it all alone because while I have the beauty of having good people in my life, even I'm not fortunate enough to never be alone so I thought trying to do on my own gave me a chance at a better point of view. By sheer coincidence, I had done a run that morning that was 3 miles starting a quarter mile from where Archer's Challenge would begin. Due to the trail being closed due to rain we had done a simple rectangle, across to Congress Avenue and up to the Capitol, heading back across to Lamar, Down Lamar to 3rd Street and back to our starting point. What can I tell you about this mornings run? I can tell you some stuff about the conversations I had with the friends, a little bit of the flooding that we talked about and how we missed running on the trail cause we caught a few lights. On the crosswalk anytime there was even a few seconds left we sprinted across confident we could make it. There was another thing that had happened as we started the run, someone from our church, Margo, was coming off a bus stop heading to work and I said hi.

When I got to Archer's challenge, thinking about Margo from the run and the history, I decided to try to replicate the exact route from that morning but in a wheelchair. I did a 5k time trial on Thursday that I had kept a 5:50 pace at. Friday morning, we'd done about a 5k easy run that I had done in 27. Last year we had done 5k together in roughly an hour as a relay team. How hard could this be I wondered since this was all paved sidewalk? I realized that earlier in the day there was a spot where the sidewalk was closed due to construction. I had no memory on it because at 6:40 AM we'd just gone the half block quickly up it uphill and the road at a sharp angle. I had already decided no matter what I wouldn't be using my legs and I started struggling with angles in both directions. Someone passed by just as I was almost done conquering and said, "I didn't know whether or not it was appropriate to offer help." I didn't know whether or not its appropriate either because with my own medical condition, brain cancer and it's deficits from brain surgery, I can't say that I've ever been great at accepting help. I passed on the help and got to the top.

There as I continued up the capitol since it had started at noon, I wanted a snack but the only place that I regularly eat was packed and I wouldn't have waited that long so I kept on rolling. There were moments I recognized were very different. I get nervous with the cars that don't stop until after the crosswalk to see if cars aren't coming. As a runner that scares me but I can usually clear out fast enough on my feet in any direction. As a cyclist, it scares me more because while I can move faster in one direction, I can't dodge a car. Today, a car pulled up at a red light onto Congress avenue with about a foot and a half in front of me in the turning right lane and I realized my 4 wheeler would have lost to theirs quickly. They did not back up, they did not apologize. I'm not sure as they looked down the street they even saw me, they just saw no cars were coming and made their 'right of way' right turn with the walking symbol lit up. The lights that I'd rushed through earlier in the day with only a few seconds left, I wouldn't take on unless they had turned to the pedestrian sign just as I arrived, afraid I wouldn't make it across the little bumps and freshly wet from the rain. Another small construction detour, I honestly was struggling and a city janitor got up behind me and without asking just pushed me to where I was trying to get, a sweet older lady and said 'I've got you baby.' With my obstinate pride, I turned around and said, 'you must be an angel.' She noticed the wheels were getting wet from the rain and she asked if I wanted gloves to be able to make the spinning easier, I said yes please and it turned out she only had one left so I put it on my left hand since I was struggling more gripping with my non dominant side. I hadn't rolled but a block or two when I realized while I may have come on an angel unaware who had been so courteous, while I'd said thank you, I hadn't had the courtesy to ask her name. 

I've been around Texas Capitol many times, for workouts, for tours, for a race with Kiana being filmed by ESPN. I've even climbed all the way to the top in a serious stair workout. Those were much easier than rolling up it in rain. Interestingly enough a constable came up and pointed out to me that the only wheelchair accessible side was the north side. I wasn't going in but I said thank you and when I got to where I thought I could get across, I realized that there was no way to cross because while there was a crosswalk, I guess they meant the walk part because the next place there was ramp was all the way back down on the other side of the sidewalk to redo most of the hill I had just conquered. I did it and started rolling back up across the way. Once again a stranger had just watched and put me all the way back said, let me at least make that part easier. His name was Rob. 

I wanted a picture next to the Capitol and usually I go up and tap someone to take a picture; I'm selfie-phobic but it was a rainy day and so not a whole lot of people were out. I saw a lady passing by and tried to get her attention but she was tuned into her phone. A runner who was further away heard me and said I'll get the picture. We talked briefly and she said she was just doing an easy 4 miler... I was struggling with 3 miles but we encouraged each other and Ashley ran on. To leave the capitol again took some extra rolling past two crosswalks to a ramp to come back up to another one. As I got back onto the streets I ran and got past stop signs and street lights, this new experience kept sinking in. I couldn't decide which was more or less considerate. As a runner, walker, there are people who their path is their path and unless you want to literally bump shoulders with them, you're going to step to the side. There were still a few of those and I circled as best as I could. There were others who walked so far around you that I wondered if they thought I had a flu not just a wheelchair. There were others who gave you normal personal space and just walked around you; they were my favorite. 

But this, this was the part where I started going down hill and it was the hardest part. There was a part where I couldn't quite control and a wheel ended up rolling off the sidewalks into a flower bed. I pulled and pulled with my upper body for a couple of minutes, just trying to pop it out but I wasn't budging. I was committed to not using my legs and was trying to figure out how to pick myself off and pull it up with just my arms and then figure out a way to prop myself back onto the chair when a stranger in a truck pulled over, pulled me out of the ditch and said there you go buddy and drove away. I kept being impressed with the hospitality of strangers. There was a place where getting onto the sidewalk was easy but in the middle there was a business drive way. It was some black ramp to get off and no way to get back on. For a small section I was just on road; I waited till there was no car coming before taking off but one came before I could get back on sidewalk who slowed down and went around me and I was so glad they were not on their phone. 

There was a ramp that had a deeper groove than usual in front of it. I actually remembered that from the run earlier that day cause I'd skipped over it. Here I didn't have that option and I thought well, I'm already wet from the rain, I guess I'll get more wet but I'd miscalculated. The puddle was deep enough and wide enough that once I was in it, I couldn't get any traction in any direction, neither backing up back onto the road or up onto the side walk. Once again I was trying to figure out what to do when my friend Steve who was running stopped by and offered to help before he recognized who I was and I briefly explained it to him and he's like well I can help you if you'll take it, I took it. Twice with a picture and with a puddle, runners came to my rescue. There's something good about that crew. 

Not long after that was the only place I probably would have asked for help because I was one block away from a place I love, the Hope Outdoor Gallery but that sits on hilly ground and no easy crosswalks near it. And to take the whole thing in really is impossible in a wheelchair since it's a steep hike on your feet but to at least be in front of it. I tried to get a couple of people's attention just daring to dream that the one and only place I'd seek help was to at least get a closer glimpse of hope but it did not come. It was still beautiful just a little further than I'm used to. 

There were other little adventures before I got back. A place with cracked sidewalk where all 4 wheels were on a slightly different plane was a lot harder to roll out of than I would have guessed on. A truck passing by me a gigantic splash that fully soaked me and I wondered what I would be doing if I was near work when something like that happened. The scooters that annoy me when I'm running worried me when I was wheelchairing. The compact cars only parking spots at a restaurant that were used by 4 bigger cars in a row made me be in the road of oncoming traffic for about 20 yards. One of the guys I ran with this morning looked worried and wondered whether I'd had some injury or some minor surgery that I hadn't told them about a few hours before. Someone else who knew me missed the point entirely because as he talked with me for a minute or two along this adventure, he was like 'huh, your arms sure are going to be sore tomorrow.' I hadn't walked a mile in his shoes so I didn't judge him and also I remembered it took me two years to even get a fraction of understanding Archer and people with this ability to get through the world without being able to walk. 

When I got back, I talked to Archer's mom and then I did the magical thing of getting up off the chair, getting back in my car and driving home to pick up Kiana from school. I took her back for the short after party and while we were there, she got to be in the chair and we said hi to Archer. I think the universe would be a little kinder if we all focused on what we have that's a gift which is in my book 100% of all that's good. I don't feel entitled to any part of life. There's times where my running abilities are commended but that's what I told onto because some of my mental ones are gone. Yesterday, a 5k on a speed workout was about a 6 minute pace, today an easier speed took me about 27 minutes. That exact route in a wheelchair, I would say by myself but that's clearly not described here, took me over 2 hours. I'm going home tonight having been in a wheelchair for 3 miles and appreciating what I have but more importantly that there are people like Archer who don't have the option of getting up off the chair and still smile at life and constantly roll with it. 

Monday, October 15, 2018

Leave A Lot To Be Desired

'You leave a lot to be desired but I still desire you'. -Melanie Doane

There are so many and yet no good parallels for a life with cancer, or at least not my life with cancer. I am unique, just like everyone else but I wonder which one of us survivors handles it most adequately, most inadequately. Coping mechanisms are sometimes like family, friendship, team, religious or political affiliations; maybe they're logical or perhaps so deeply ingrained that they're so far in our minds that we've stopped thinking about them. That's an odd line for a guy with brain cancer because it is exactly what's inside my brain that consumes too many of my thoughts. 

I am getting ready for the Livestrong Challenge this weekend where it's a family event with Elaine, Kiana and I all riding together. This event will be my 8th local one here in Austin where I've ran the 5k one time, ridden the 100 mile century 4 times, ridden 20 miles with Kiana once and 45 with Elaine once. It's never about the bike though. In it, without fail, I find confusing inspiration. Inspiration is easier to digest from the people that are cancer free and are thankful for avoiding death for a little longer. But the confusing and yet amazingly inspirational people are those who have lost limbs and are out there living life with more gratefulness and strength than some people can handle bad traffic. There are the people who have lost lungs and have outlived their prognosis and literally appreciate every single breath. There are those who have had organs that were meant to nurture life, to reproduce it that instead of procreating have almost brought demise who appreciate the cancer experience as a second birth of their own. There are enough of us who make light of these things with jokes that some have called dark humor but to me, a guy whose neuropsychological evaluation says humor is a coping mechanism, anyone can focus on the dark all they want, each punchline, each laugh is a match and at times that's all that's kept me from tripping too much harder on the uneven, unpredictable often obscure path. 

I am well aware that it's only 3 weeks until I am 1 year above the median of my cancer survival's rate and of course that's 8 years.Naturally, we're having a party, my first 'birthday party' since 08/08/08. I perhaps say it a bit too much but I didn't think I'd be here but the universe has been kind. It would be dishonest to say that there are times I don't miss a more normal life where I hold a regular job without having been in media for a disease. I almost remember what it's like to have a dependable memory, nearly perceive a time where I had good facial recognition, can get close to that area of my brain where I had spatial orientation. But it's so far now that, the deficits are all but ordinary, the abnormal becomes normal in its own way. Yet there's enough primal moments where you want to just do things with honest conviction without a second thought where the Life Part I and Life Part II find their dividing line on the side of my head. This is one of those rare instances where while I miss some of the original character, I'm convinced the sequel is definitely better. Life has left a lot to be desired but I still desire it. 

There are fun little moments that occur now and then. There is a wedding where we have fun with outfits because the dress code calls for ranch formal and we make do. There are moments where Kiana hosts her first sleepover and I am both under and overwhelmed by Kiana and other 11 year old's conversation. Intrigued by a question I'd never received "what's your pronoun?" and wondering whether I handled it more awkwardly now or would have done so in Jr. High. I play a good sport when Kiana asks to do my make up so her and her friends can giggle at me and then while keeping it on for a while and then when trying to remove it, I can simply say I am genuinely appreciative that my pronoun has many things in life that are simpler. 

In 2016, I could count on one hand the number of times I'd ran more than 50 miles in week in the entirety of my life. Late that year, two of my doctors sent me a study that said that brain cancer survival rates are higher in long distance runners. It was no coincidence that 2017 was the highest mileage year of my life with no races. I would run over 60 miles that year 3 weeks and 70 twice and thought well I don't need to take it over board, no need to do that again. This year I've ran the highest mileage week of my life 3 times, with two of them over 80 and last week I ran 92. When people see me running they'd ask what I was training for and in 2017 I didn't even run a marathon so I'd say just running but my friend and wedding officiant finally gave me the right answer, I'm training for life. Though I did an additional 18 on Sunday. 110 miles in 8 days made my legs wonder if running was going to make me live longer or if it just seemed longer...

There are other moments where cancer is far from my mind because life has a few distractions. Like today, Kiana’s after school animal club got cancelled due to weather. She figured someone would tell me and I’d be there since in Elementary School that's what happened. That's not the way it works in jr high She didn't think about calling herself and instead decided to walk home 3 miles in 45 degrees and rain. Though she be but little, she is fierce. She’s definitely my daughter. I lectured her on not worrying her dad and that if she wanted to walk that was up to her but not to have me waiting a long time while inside I was just glad everything was okay. I didn't say that out loud at least not with words but I think the hug after the lecture said it where she understood. But let me clearer somewhere else. Mom, if you're reading this, I apologize for all of those times I assumed you'd magically know where I was and that I'd be safe. I am not sure I am going to be able to be as prepared or handle as smoothly all the decades of worrying that you have. You have 3 boys and at least one of us is consistently obnoxious and I am sorry about that. 

There are other moments where the fact Kiana's my daughter gets seriously reaffirmed. Her first cross country season was only 2 back to back weekend meets due to a lot of rain here. Still, on the first one she broke 13 minutes in the biggest junior high meet in the state, taking 6th female while running against all 6th through 8th grade boys. On the second one, a smaller one she was the second person in her heat of all 6th graders, getting beat by one 6th grade boy by a few seconds. Both times I thought she rocked it, both times she immediately expressed how she could have done better. I can't quite guess where she got that competitive vibe from. But while I'm proud of her races and her drive, it was in the 2nd meet where a boy tripped early as they went on and I saw it and was seriously impressed with how deftly she jumped around and over him, it was her description of it that made me once again wonder who is raising who because she said, "I thought about helping him up but then remembered it was a race." I related that he was fine and got up and ran well but I can actually remember people falling in races both as an adult and as a kid and candidly, I can't think of once where I thought about picking them up. 

I have a race this weekend and then the ride on Sunday with the whole family. The weekend after that I have my first Ultra Beast with my wife. I have that party to look forward to in November which is the day after I do another race next to Kiana. I am also going to go Climb Machu Piccu with my wife and some friends during Thanksgiving. I also know that roughly a month after that I have an MRI. Will that be when things start to wrap up? I don't know but I see enough brain cancer friends whose imaging go in enough directions both good and bad to where as I do before MRI, I start making preparations in case it goes the least preferred way. But then again, some of life's preparation and transitions may show in that I went to two romantic musicals last weekend and enjoyed them both, even dressed up for one of them (my wife cleans up well). However, these days I'm preparing for life better as well we have season passes for this year's UT musical program and are working on next summer's trip. I didn't even let myself dream beyond the next MRI before and now I'm planning beyond the next two. In fact, my doctor once said that if I get to 10 years we'd move to MRI's once a year instead of every 6 months. Maybe for me, it should be once I hit 8 years. 

I don't know how any of life or death will go and my own has gone in enough good and bad directions to where I'd probably not make any big bets in either direction. I hope when I'm gone, I've fed life and love enough to where when its my time to go, I leave a lot to be desired. But while I have the chance, I am going to keep desiring life.