July 8th, 1999. Symmetry Spire, The Tetons WY. You know that feeling? The one where you’re about half way up the fourth or fifth pitch of a climb. And you’re stuck. You’re holding on to the rock face with your fingers with all of Gods creation stretching out below you as far as the eye can see and you just can’t figure out how to pull the next move. Then suddenly the thought hits you. How the fuck did I get here? That feeling. Been having a lot of those moments of late.Last weekend we drove to Galesburg to see Sophia play in an Ultimate Frisbee tournament. On the way Rae said that she had been reading “The Survivor Guidelines.” It’s a step by step guide put out by the local Jewish community about what to do after the passing of a loved one and the timeframe in which each task needs to be accomplished. Notifying the coroner, planning for the funeral service, the seven nights of shiva etc. She said she hadn’t realized how there was so much to do and compared it to planning a Bar Mitzvah. But in this case she would be doing it alone. And it’s not like you can send out a “save the date” card to your friends and family. I asked if I could take a look at the book to see if there was anything I could help take care of ahead of time. It’s not a big pamphlet, it’s more the circumstances surrounding the need that can make it all seem somewhat overwhelming. When I saw how much the whole affair would cost I was a little shocked but then it occurred to me, oh yeah, my funeral would actually cost less than several of the bicycles I own.When you belay a climber, even if you can’t see him or her, you just get a feel for how they’re doing by how the rope is handling. Sometimes the signs are subtle like tension in the rope and sometimes not so much like when you’re suddenly yanked several feet into air when the person on the other end falls. My fellow climber Mark had preceeded me on this pitch and as the belay I had felt a period of time where the rope had repeatedly lengthened and shortened without any overall upward progress being made. So I knew there was a problematic section. I had tried leaning out to see what was going on above but couldn’t really see much from my vantage point. And now I was stuck at the same point and Mark in turn at the other end of the rope knew I was having difficulties. You try to move up but always seem to fall short of the mark. You move to the left, then the right looking for something you may have missed. I called up to Mark for some beta. To which he yelled down “WORK YOUR WAY IN A GENERALLY UPWARD DIRECTION!”
A good deal of living optimally with ALS involves having things in place before you actually need them. You know you’ll need a ramp. Build the bloody thing. Get it out of the way. I’m not going to die tomorrow. At least I don’t think so. Although, having said that if we’ve learnt anything from ALS it’s never to take anything for granted. But eventually I am going to die. This of course has always been the case but now I feel like it’s being rubbed in my face. Everyone will face this (or not) in a different way. But the only way I know how to deal with anything is to prepare. To plan. To have things in place before we actually need them. It’s not the only thing on my mind but let’s just say it’s up there. Rae and I met with the Rabbi last week to go over the order of things and what there might be in terms of flexibility in including things that are meaningful to us and our family in the funeral service. We went over practical issues such as types of coffin and which funeral homes may best suit our needs. But also more personal issues such as who we’d like to speak during the service (you’ll be notified in due course), what song I’d like played during the service (the singer’s initials might be LC) the songs for each night of Shiva (yes, I am going to DJ my own Shiva) and how we’re going to get from the Temple to the cemetery (bicycle of course). If you’re coming from out of town bring your bike. I hope all who are able will form one huge bicycle processional. When Rae and l meet with the people from the funeral home we’ll find out if you’ll need to wear one of those special flags.To my left was a vertical arête (outside corner). It wasn’t quite 90 degrees and there was nowhere to put my feet but that was all I had to work with so it was going to have to do. I turned to face the arête and with both hands clasped the corner. Then I gingerly layed back away from the rock-face and placed the edge of my shoes against the flat rock surface. Looking for the sweet spot between leaning out far enough where the rubber of my shoes would provide some traction against the rock but not so far that my fingers would pop off the arête. One of my starkest recollections of this short section was that until now I had been climbing facing the rock, now I was climbing with my side to the rock, staring into the void beyond the corner. Slowly putting one hand above the other and pushing up with my feet I worked my way in a generally upward direction until I got to a place with more usable features. Once there, pulling myself up was a relative piece of cake. I was a little apprehensive about what else may lie ahead but once I passed that section everything else was comparatively easy.As our list of things to do grew it occurred to me that these were all things that people on this side would need to do. I have said that I do not believe in a life after this one and that still holds true. However, I couldn’t help but ponder, if there were an afterlife would there be this much paperwork on the other side? As a midwife I have seen firsthand the staggering amount of paperwork that is generated each time a life crosses into this plane of existence. My life did not begin at birth and I doubt it will abruptly cease when I draw my last breath and my muscles finally stop fasciculating. There is a traditional Jewish belief that the soul hovers over the body for a few days after death. The thought being that the soul is confused and stays in the general vicinity of the body until it is interred. Perhaps having its own “how the fuck did I get here” moment.
I was quite relieved, to say the least, to finally reach Mark at the belay station he had set up and was looking forward to a break. Mark was by far the more experienced climber of the two of us and up to this point he had led each pitch. But he announced that he was tired of leading and put the rack over my shoulder and motioned me upward. I had never led trad. Ever. But fair enough I thought, he shouldn’t have to do all the work and I started climbing again (actually I thought he was out of his fucking mind). I remember looking down at one point and seeing that the last piece of protection I had placed had popped out of the crack I placed it in. If I fell it was going to be a long fall. But fortunately the rest of the climb proceeded without incident. And on some of the higher pitches it hardly seemed a rope was necessary. Once on the summit we rappeled down to the couloir and shoe-skied (one of us a lot more gracefully than the other) a good chunk of the way down. That morning on the way up Mark had put a couple of cans of beer in a stream for us on the way back. I thought there was no way in hell we’d ever find them again but Mark magically steered us right to them. Two beers in a cold mountain stream for the conquering heroes to imbibe on the way down. Let me tell you. Sometimes a beer is just a beer. But other times……..There is a Jewish religious ritual of watching over the body of a deceased person from the time of death until burial. The people who perform this task are called shomrim. Traditionally, shomrim read Psalms or the book of Job. Shomrim are also encouraged to meditate, pray, and read spiritual texts, or texts about death. Shomrim are prohibited from eating, drinking, or doing anything remotely fun while performing their duties out of respect for the dead, who can no longer do these things. Well let me just throw this out there. I can no longer read Torah but get immeasurable joy from hearing others, especially those I have tutored, do so. Please feel free to read Torah to me. And anyone who I have tutored knows that Torah study and tea drinking are synonymous. For those who sit Shomer for me, what you read I will leave up to you but partaking of the cuppa while reading it is mandatory.As I said initially, I have a lot easier time approaching things knowing there is a plan. The end is no exception. Planning for it beats staring into the void and hoping against hope that you’ll somehow just be able to hang on. At some point, one way or another, you’re going to have to work your way in a generally upward direction. That’s the only way you’re going to get to that cold beer. It would be false bravado to pretend that I’m not a tad apprehensive about what lies ahead but I think embracing the inevitability of it is the hard part. Two years ago I was having my best cycling year ever. Going on 200 mile rides on my days off just for the hell of it, competing in 24 hour rides. Nothing seemed beyond my reach. Then in the relative blink of an eye it seemed that we were making plans of a very different sort. But like the climb, once you’ve moved on from the “how the fuck did I get here” moment, everything else is comparatively easy.Raif, a long (long) time family friend and Bar Mitzvah tutor of two of our children is now a Rabbi and lives in LA. He was in town with his wife and daughter visiting family and came by for tea. We talked of many things including some of the challenges of being a new Rabbi (well Raif and Jessica his wife talked while I typed my questions and responses back to them). Invariably we discussed Torah because, well, we always do. He has an associate who had written extensively on Torah interpretation and what exactly the bible says and does not say on the subject of homosexuality. A subject close to my heart. I asked if he could send me some of his writings. As I did so it occurred to me that it had been a long time since I’ve actively sought out new learning. I’ve been kind of stuck at the endpoint for a while. It’s been a heavy couple of weeks and I’m ready to move on to something new now. Cheers
Peace, love and midwives