Tuesday, August 28, 2012

Not Cheating

Is It Cheating?
I’ve long said that I have a lot of bad qualities but pretentiousness isn’t one of them… and I hope that’s true till my dying day. I’ve struggled with lots of things since that seizure, this diagnosis, this collapse of my life. Some of it has been facing demons, some of it has been ignorance, some of it has been fear. And everything that’s gone right… everything that’s gone right is where I accepted Abe Lincoln’s old adage that if we don’t hang together, we’ll hang separately.

When the seizure occurred and I was at the hospital and I got told of this damn cancer diagnosis, the best and worst thing to ever happen to me, I told them to rub some dirt in it. I snuck out of the hospital and ran 8 miles with an IV in my arm. My friends were there at the hospital and are still here and were more concerned about me dying and I was trying to figure out how to make sure my family was adequately provided for. A friend connected me to Livestrong and they offered many many things like emotional support, medical direction, connecting me with someone who had the same diagnosis, counseling for my daughter. I just wanted to work on logistics of medicine and finances. And even then I wanted to do it all by myself.

A few days later the Austin ultimate community would announce a tournament to help raise money for my medical bills, at that tournament  the Houston ultimate community would announce the same thing, then the Toronto community sent a check, then the UT players would give me a check, then my running community the Ship of Fools would pay for my plane tickets to Duke. Someone sent a gift card to restaurants so that I would still go out to eat while dealing with all this. Tons of people would take me to medical appointments, workouts, home. With the tournaments and the running community, I asked them why hadn’t they talked to me and they answered very correctly that if they had I would have tried to stop it. With the gift cards, I threw them across the room. With each one of the sporting events I cried both out of broken pride and out of gratefulness and I can’t tell you which one was greater at any of these events. When they kept happening, I turned to Todd the executor of my will and the guy who put together the first event and told him to make it stop.  He ignored that as he promised that he would ignore my wish to be cremated and flushed down the toilet when anything goes wrong.

My sister Susan said she wasn’t helping with anything other than my tattoo and I blew her off for months. My brothers and mother wanted to come to Duke and stay at a hotel near the hospital and I told them I had a place where they could crash for free even if it was further away. My neuropsychologist wanted me to get an Ipad (which another friend paid for) and try lumosity.com to get some of the functions back. When I hurt my IT band while putting off surgery to run the Livestrong marathon, the doctor offered me cortisone and I looked up at him and asked if that was cheating? He smiled and said it was perfectly legal for both amateur and professional sports (but perhaps showing my pride, I took only one of the 2 he thought was necessary).

I’ve sat and done lumosity day in and day out, trying to pretend like the neurological rehab is just a matter of effort, gotten faster at running and better at jokes because those are my coping mechanisms (as mechanisms go, I’ll take them). In time, I realized my screw-ups and tried to correct them… Kiana enrolled in Wonders and Worries and she made me realize what I once told her wasn’t true… that she was a princess. Livestrong’s counseling classes have helped. Sitting with a minister as suggested by someone has helped. Matt Naylor ran the last few miles of the 2 Livestrong marathons as a safety precaution, one qualified me for Boston and one let me take home the trophy of Cancer Survivor winner.

I’m probably a long way from where I belong but all I can say 2 years later is that without exception the areas where I accepted help, I’m doing better than in the areas where I pretended to be, what my neurologist told me today that I’m not, omnipotent. My compensatory strategies for some of the neurological deficits I’ve always called cheating. He literally blew his hand across the air and told me you had a significant part of your brain damaged.

When I did that Century bike ride for Livestrong, I took all kinds of tips from Chris Brewer and various cyclists and that’s why it went well. The reason I’m getting PR’s in so many events is because I have great running friends. I’ve sat here and tried to keep paying everyone back, running tourneys that help them get that money back, trying to raise money for Livestrong… and that’s dumb because the best thing is to accept it and if at all possible be paying it forward. The first time at Duke I signed up for a study where I would donate my brain to science (which still stands), this trip it’s a study that will track me for the next 10 years which explicitly states that this may not help you at all but hopefully it will help people in the future. There is disagreement on what’s still showing up but no matter what we don’t have to monitor it as closely as we have been. I hope to beat this but my doctors are realistic that anyone who has had cancer, particularly brain cancer, may well have it show back up at any time. I’ve always lived like I was dying but maybe I had many parts of the living wrong. I’m a better father, a better runner by help if from nothing else than I do it more, and practice helps you improve things.  Even as my doctor told me to stop trying to pretend that I’m omnipotent, I asked if I could keep doing those two things.  He said I could and somehow that’s comforting.

I tried to take less anti-seizure medication and was found on the side of the road a few months later. It took the second time of waking up in an ambulance before I learned to wear a bracelet with contact info. Now we may be playing with some medication and there’s some possibilities that this could lower my seizure threshold… if nothing else, I swallowed my pride and took someone to that appointment with me… maybe I should do that to all appointments because frankly my doctors have often asked why I show up alone. And the guy who constantly protests his George Clooney lifestyle (some out of basic emotional fear, and some out of wondering if it’s just too much to ask to have someone sign up for so much baggage).

When going through crisis of any sort, accepting a variety of help is not cheating. Some crisises break people even if you accept help; that’s called life. I told my doctors here and at Duke that if I didn’t have a kid I’d be happy to wonder around the Grand Canyon with no meds and die when I die.  But do have a kid and am trying to do things all by yourself is a good way to get left all by yourself.

The old adage is that it’s easier to give than to receive and for me that’s certainly true. But taking help isn’t cheating, refusing blessings is cheating yourself out of the kindness that the universe has given you. I am still in touch with the Imerman angel I was connected to, still in love with Livestrong, destroyed a track workout tonight, still helping the ultimate community the best I can, and above all, still ready to take Kiana to school tomorrow. To those of you who have been along so far and with life as unpredictable as it  has been… help me to keep focus on cheating death, not cheating life.

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