So we blew off a couple of minor medical appointments and escaped to Pinnacles National Park, one of the newest national parks in the system, about 3 1/2 hours south of here, reluctantly returning yesterday to make today's medical appointment. Earlier in the week, Deborah and I were both so sick from chemotherapy and other drug treatments that I almost bagged the whole idea. But again, we decided to be sick somewhere beautiful. And after the first day, we simply got better. Each day we made a longer and steeper hike, until we had crossed almost the entire park and tasted a bit of the strength and stamina we used to have. In the evenings we crashed at our camp -- to Tater, our fabulous little rolling condo. Even though we are absolutely flat broke, we have the advantage of our federal lands handicapped pass, which means our favorite places are now free!
It's another lesson, or at least one reinforced: You can feel lousy and do nothing or feel lousy and let serendipity have a chance. We cast our lot for serendipity, and were rewarded with perfect weather, stunning spring wildflowers, and best of all, peace. No traffic, no cell signal, no connection to the misery we left behind. We woke up to turkeys gobbling and quail whistling, and spent our days too involved in wild places to dwell on concerns. And most importantly, we remembered why years ago we had worked so hard to adopt this lifestyle. The only thing I would do differently now is attempt, somehow, to inspire others to do the same. For us the magic is wild nature, but for others it could be anything that makes you feel so alive that you catch yourself in tears.
Just go. Just do. Right now.
It has been rough since the Eroica ride last weekend. I spent most of the next two days in bed. Complications with my "recovery" has me back on an IV twice a day. And overall, I don't feel one bit better than the day I left the hospital. It has been 56 days since my bone marrow transplant, 378 days since open heart surgery, and honestly I have forgotten what it is like to feel truly healthy. Any physical activity I do is simple mind-over-discomfort management and not an artifact of any improvement. If I do something that another individual in my circumstances can't, it is only because I am willing to hurt more, not because I am actually better. I have been doing that for months and stuff just isn't much fun anymore. The doctors are pleased because I am not dead and therefore a success. I don't think that is a success. So here is what I hope is some wisdom for anyone who cares about this:
Live your life so deeply and fearlessly that when (probably not if) you come to a crossroads that involves either living briefly or existing for a bit longer, you will know instantly what to do. I have done some quietly spectacularl things and probably even more disastrous ones, but my life history pales in comparison to the one I should have lived - one that was truly fearless. Consequently, twice in one year I wasn't ready to correctly choose between a compromised existence or a shorter one ending in dignity. Both times I chose the compromise. I wouldn't do it again. I have been spending the last few years trying to become fearless, and doing a decent job of it, but still I didn't have a big enough stash of satisfying experiences to say, " Wow, it has been an incredible ride. I won't diminish it by a life winding down with medications and endless medical appointments. My life is too great for an ending in a hospital bed." I couldn't say that, not yet, and was unprepared for the decision. Do not allow yourself to get caught in this position. Live as if you are going to die tomorrow, scare yourself, get lonely, sick, robbed. Crash and burn and then come back again. Repeat that until folks start fearing for your safety. Then you will know you are living. There is tremendous wisdom in the saying that we should always carry death like a little bird on our shoulder. After a while you lose the fear, but not the awareness.
So now I am stuck with it all, patched, scarred, and jury-rigged to keep me going, whatever that means. And I am not interested in knitting or stamp collecting. I only want to run and ride trails and somehow make the world more beautiful just by being in it. As the milestone Day 100 looms without noticeable improvement, marking the difference between acute (OK I can do that) or chronic (very not good) side effects of a bone marrow transplant, I feel a creeping sense of earnest. But at the same time, life is distilled to a wonderful purity. And if I survive this shit, that will be the take-away.
On April 10th, I managed to force myself and my old bike through the short course at the Eroica California vintage bike ride in the hills above Paso Robles. http://www.eroicacalifornia.com/ It had been three weeks of constant challenge against the odds (check earlier posts), even right to the starting gate. Waiting next in line to get my ride book stamped and take off, I noticed that my old front Panaracer tire had blown out a sidewall. A big aneurysym just cleared the forks on the left side with the broken tire sidewall threads wacking the fork on each revolution. Repairs from last night had yet to be road tested: the problematic axle nuts, the crank cotter pins, the weak seat post, and now this. Nausea, spinning head from my morning drugs -- I felt the least healthiest I have ever been in my life, like a train wreck without even yet leaving the station. Looking back at the photos, I look like a wreck.
So I figured I would get my ride card stamped, ride under the starting banner, maybe make a mile and come back. I had given this gig all the energy and time I had left and I was OK just calling it good. Mentally and physically I was numb as a stone. But after a mile the tire didn't blow. After the first long hill, the crank held. So I figured the worst case scenario, a tire blowing on a long downhill and me hitting the pavement at 30 mph, and I realized that it still wouldn't be as bad as open heart surgery or three rounds of chemotherapy, so I said to hell with it and rode until something disintegrated. And nothing did, other than my legs.
The ride itself was beautiful; steeply rolling hills through olive orchards and vineyards, classic pastoral stuff. Glorious and meticulously maintained vintage machines stretched out in lines in front and behind me. The odd rider's group on the roadside every mile making repairs. (I never did!) I cannot imagine trying any harder to get to and through this event, making this dream come true. It was an inspiration to be part of it in any sense, much less finishing a route.
Thank you to all family and friends who helped fix, patch, and cajole my bicycle and my body through this thing. If I still didn't feel so sick I would be walking in the clouds right now, so forgive me for this brief post about an incredibly important and epic event from my bucket list.
And tomorrow morning it is back to the doctor, and I will never tell him a thing.
Shockingly, I found some of the last parts I needed for the ride at the swap meet today. The big score was a pair of vintage Italian Detto cycling shoes for $18 ($200 savings). The bike concourse was stunning, never seen so much mechanical beauty in one place, ever. But then more challenges.
1. Adventures with steroids: My first full day on them, chemically juxtaposed with my full dose of marijuana pills, and I was stoned. I could barely walk, much less drive, and worked hard at coherency -- I think. No way I could ride a bike. It helped my symptoms but tomorrow will be half doses only!
2. Endless wingnut saga. With ancient components, the axle slipped every time I accelerated, jamming the wheel into the rear frame. Finally after four disassemblies, cleaning, filing, and torquing to the maximum possible, it seems to be holding. Then the cotter pin crank worked loose. Had to beat it back in and crank the tightening nut to the extreme. Decades ago I swore against cottered cranks and then here I am. I will have to take the hills very easy and walk the steepest of them because if one of these items malfunctions out there, I will just have to wait for the next sag wagon and go home.
This little adventure has been so relentlessly daunting, that my goal is now to just make it to the starting line. I have no idea if me or my bicycle will make it one mile or the whole way, but I will at least pass under that starting banner and go until something breaks down. http://www.eroicacalifornia.com/
If you want to be swaggeringly hip-retro-vintage on a bicycle, choose a ride with some rare or obscure detail, and better yet, let the idiosyncracy be something potentially catastrophic. Then you are dangerous cool, which is much better than regular cool. I did that. I chose a bike with '60s French Huret wheels held in place by... giant chromed wingnuts. They really do look fabulous, but then there is a reason wingnuts never even made it past disco.
Yesterday: The light turned green to cross, four lanes of traffic stopped each way just outside of Santa Rosa, CA. I stood on the pedals to get a move across the road, the rear right wingnut slipped, the rear wheel jammed full force into the frame, and I hit the pavement as hard as I could. In front of a packed audience. So I did what you all would probably do and quickly and nonchalantly (in my mind) picked up the bike and walked back over to the sidewalk, acting like I didn't just hurt myself really bad. The truth is that I have road rash from my calf to my butt. Funny that my first thought was "Wow, my platelet counts must be good enough to keep me from hemorraghing to death right here in front of every body -- as if the crash was not spectacle enough." Reality was: I now have a really banged up leg, I am behind in my training, I generally feel like yuck, and my bike now needs repairs... and we are leaving for the Eroica ride in the morning.
So I cut back the ride to 20 miles, just enough to keep from stiffening up, and took my machine and bleeding leg back to my make-shift bike shop in brother David's garage. Two hours of repair later, aided significantly by Deborah and my mother Elfriede, and my ride was actually better than before.
But wait... there are still not enough challenges! A visit with my doctor on the way out of town this morning all but confirmed that I have graft vs. host disease, essentially my new immune system attacking my skin and digestive system. So now I have added steroids to my medicinal cocktail to combat the rash and mind-altering itching -- and for nausea, a marijuana derivative. It has come to that-- I am now both a marginal juicer and stoner.
And the weather for Paso Robles this weekend is rain.
But we made it here in our fabulous Airstream to the Paso Robles RV Ranch, where we will spend the wet weekend. I have already hung with a couple of bike builders from Oakland and their incredible machines. I am just trying to make it to the starting line.