Life In Flux

There’s a scene in the first “Back To The Future” movie. The main character, Marty McFly, is catapulted back in time to 1955 where he meets, as high school students, the people who would one day become his parents. Whenever Marty is confronted by a situation that is too overwhelming for him, which seems to be quite often, he says “Whoa. This is heavy.” Eventually his friend, the eccentric scientist Doc Brown, says “There’s that word again. ‘Heavy.’ Why are things so heavy in the future? Is there a problem with the Earth’s gravitational pull?” The future they were referring to was 1985 but as I recall, gravity was working just fine back then. However, here in 2016 it’s another matter altogether. There is definitely a problem with the Earth’s gravitational pull because things are getting really heavy. And seem to be getting heavier by the day. I’m sitting here at the coffee shop typing with one leaden finger, drinking a 12 oz cappuccino. I’m not a caffeine lightweight but the 16 oz became a victim of that problem with the Earths gravitational pull some time ago.Untitled

I live in parallel worlds. The one thing that ALS has not affected (so far) is my ability to sleep. Although Rae has to arrange my body parts in a comfortable position after she has laid me down. My dreams are deep and at times pretty intense. But rarely, if ever, do my ALS symptoms intrude in my dreams. When I dream about riding it’s always on my two wheeler. To the best of my recollection the trike has yet to make an appearance after lights out. Last night I was riding in a race. I had two laps to go and was in the lead. On some level I was quite aware I had no business riding this well but I wasn’t complaining and just went with it. Enjoying feeling the breeze on my face and watching the road fly by under my wheels. Alas I can not say if I won because I awoke before the end of the race. But in that hazy post dream semi conscious state I was still feeling pretty stoked about my cycling skills. I just couldn’t understand why such an amazing cyclist was having so much difficulty rolling over in bed.rideI’m not going to jinx it by saying Spring is here but it was in the 70’s today. Time to break out the cycling shorts. There are hazards to riding a recumbent trike. Some, like visibility, are obvious. Others are a little harder to foresee. I guess I have never noticed just how white my thighs are after the long winter hibernation because they are generally underneath me on the bike. But on the trike they are front and center. This vast expanse of pale flesh reflecting the sun. It can cause a total white-out. For my part I can fix this by investing in some better sunglasses. But I worry about blinding on-coming drivers.IMG_9897

Over the years my life has become very ritualistic. I’ve just refined everything till it’s a certain way. I’m guessing most of us do this to some degree. When you’ve gotten things the way you like them why mess with it. Some of these things are negotiable depending on the company. Other things not so much. But obviously riding was subject to this ritualization. Whenever I reached the furthest point on any given ride I would buy a lottery ticket. Just one. It was my early retirement plan. In the decades that I did this I was “Sorry, not a winner” 99.99% of the time. I never won the big one. Although I do recall having won $10 once. My rides are shorter these days but I still buy the tickets. But along with lowering my expectations I have also redefined winning the lottery. Now winning the lottery qualifies as putting a piece of food in my mouth and having it land between my teeth first try instead of having to toss my head around like a bloody heron trying to get the food to a place in my mouth that I can bite down on it.

I have taken to traveling everywhere with a chopstick and a cloth tucked into my arm sling. In the past when we went out Rae would ask “do you have you’re phone and your wallet?” Now it’s “don’t forget your chopstick sweetie.” Both items are critical in the off chance that I decide to take my life into my own hands and eat something in a public place. The cloth is for the incessant salivation and to hold over my mouth because I have to chew with my mouth open. The chopstick is my prosthetic tongue. At home it doesn’t matter if I poke food around my mouth with my finger. Or spit food back onto my plate because I took too big a bite. But in a restaurant that might be considered crass. So I use the chopstick to discreetly (ha ha) work food over to the right side of my mouth where it can be chewed. I don’t know if there’s an etiquette book on eating with ALS. If such a thing does exist I’m guessing it’s pretty short. It’s odd what I can and can’t consume. I can drink coffee yet I choke on water. Brie and crackers, fine. Popcorn, instant death. Soup, bring it on. But if it gets too thick, the person sitting across from me will end up wearing it. Some things work and other things not so much. There seems to be no rhyme nor reason to it all. I guess it will have to remain one of life’s great mysteries. Like why do homeless people have such thick heads of hair or how is having your seat tray fastened in the upright position going to help if your plane drops out of the sky from 30,000 ft?IMG_0189Jack’s word for bottle is “baba.” Jack’s word for me is also “baba” but in a different pitch. I love reading to Jack. Having him be excited to see me is a relatively new development. He never used to come to me because he knew I couldn’t pick him up.  But now he’s more mobile and just throws a book and/or a bead necklace in my lap and climbs up into the chair with me. And best of all he understands every word I say. He is probably the only one that does. He will occasionally correct me. Pointing to a word or letter or picture in the book and repeating it like his mum or Bobe say it (he’s a clever little shite is our Jack). But never once has he given me the “and what the hell are you on” stare.jack copy

A common worry amongst first time moms was “what if I’m in labor and don’t know it?” I try to reassure them that this is unlikely. But a lot of people seem to have a friend who had a friend who had a cousin that delivered on the living room floor because they didn’t know they were in labor. I try to give them permission to worry about something else. Often without success. I try many ways to get my point across. It usually goes something like this: Here we are having this conversation. If you were in active labor, even if we shared this same physical proximity we would not be in the same place. You would be in labor land. It’s like a window into another world. And the only time you can truly understand that place is when you’re in the midst of it. No number of books or classes can ever prepare you for it. And once you’ve had the baby you want to hold on to the experience. You have been through this thing that you’ve been hearing about for most of your life. But it fades quickly. The window closes. It wasn’t meant to be held onto. It’s too intense. Given that I have not so much as experienced a menstrual cramp in my life this is my best shot at describing it.  That being said there are not words that I am aware of in any language that can adequately describe the process of bringing life into this world but it strikes me as something you can’t miss.IMG_0838People would often come to prenatal visits with a “birth plan.” I preferred to call them “birth wish lists” since it really wasn’t something anyone could plan. Birth tends to have a life of its own. I’m guessing that for all our attempts to stay on top of things and plan, death is going to be similar. A window into another world that you can only appreciate whilst in the midst of. We were at the doctor’s today filling out the DNR form (Do Not Resuscitate). Like all things it wasn’t just black and white. There were lists of circumstances and selective types of resuscitation that I might find acceptable in certain cases. To avoid confusion I declined it all and signed on the dotted line. It’s now on file as part of my “death plan.” I look at the words on the DNR form and I know what they mean. But I don’t really. I have witnessed birth over 2,000 times. Yet as I said describing it eludes me. I have only witnessed a handful of deaths. Here we are preparing for the great unknown. I know how I would like it to go but I’m preparing for something that can not be expressed from this plane of existence. Rae is a doula. A doula is someone who provides physical and emotional support to the mother before, during and after birth. Also providing emotional and practical support during the transition to motherhood. She has been a doula for longer than I have been a midwife. I have seen Rae in action in this capacity and it is truly a thing to behold. I will be going through a very different type of transition but it is her stated goal to doula the shit out of me to the very end. In the face of so much unknown I find that very comforting. More so than any piece of paper on file in my chart or plan I may have made.IMG_0174I recall several occasions where my grandmother brought up the subject of her death, or “not being around anymore” as she referred to it. She was always immediately hushed by family members and on one occasion even chastised for being so morbid. You could almost feel a collective sigh of “oh God, here she goes again” whenever she brought the subject up. A few weeks ago when we visited Sophia at Knox we took her out for Mexican food. We have tried to be as open and matter-of-fact as possible about what’s going on. We have a rough outline of the funeral service and Sophia asked me “how do you feel about all that?” We didn’t include everything we could have in the service but we still have quite a bit going on. There were a million questions Sophia could have asked. Or she could have just changed the subject as my family always had. I mean, here we were in a Mexican restaurant talking to her about her father’s funeral. But after a long pause and a deep slow sip from her margarita she looked up pensively and asked: “so is there going to be a halftime show?”IMG_9861

Peace, love and midwives

Ray

 

 

Into The Void

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.Ray 1999Last 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.IMG_1879When 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.IMG_9927To 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.mountainAs 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……..wyomingThere 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.IMG_5627As 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.IMG_9981Raif, 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. CheersIMG_7302

Peace, love and midwives

Ray

 

 

 

 

A Life In The Day

Rae and I never intended to stay in Urbana. After working and saving for three years, in July of 1986 we set off to travel the world and find the perfect place to live. During our travels we had just one rule. And that was that we could never buy any return tickets. This seemed like a great idea at the time. It kept us exploring new places. However, one major drawback to this grand idea, which in retrospect seems so obvious, was that after three years of traveling we had completely circumnavigated the globe and ended up right back where we started. Although the significance of this eluded me at the time. As far as I was concerened I had been condemned to live in Urbana.

August 21, 1986. Everett WA. When we set off on our travels we had no idea how long we would be gone. We had saved a certain amount of money and planned to travel till it ran out. Given our finite resources we would often go to extraordinary lengths to avoid having to pay for spending the night somewhere. Our two person Jansport tent had sprung a leak around the window and we happened to be near the manufacture in Everett so we took it in for repairs. They said there would be no problem and we could pick it up the following day. We asked if there was anywhere around we could spend the night given that we wouldn’t have a tent. The woman mentioned a small one room lodge in the nearby back country that had a 360 degree view of the mountains. It was maintained by a local alpine club and was well worth the hike if we were up to it. She didn’t think anyone would be using it at this time of year and gave us directions to the road to the trailhead. She may have mentioned something about distance but all I heard was “free” and blocked out everything else.

So there we were driving a small Mazda GLC on a rutted mountain trail and after we had bottomed out a few times it became obvious we were ill equipped for the terrain and considered turning back. Unfortunately the road was too narrow to turn the car around. I thought about asking Rae to get out and walk so that the car wouldn’t be so heavy but intuitively knew that this might be something I might come to regret for approximately the rest of my life. We men are smart that way. Our only options were reversing back down the mountain or forging on and hoping we didn’t lose any critical parts off the bottom of the car. So on we went. Eventually we arrived at the trailhead and by some miracle the exhaust was still attached. The woman in the Jansport office had told us that once we hiked above the trees we would be able to see the hut. In retrospect it was either a tremendous leap of faith or the height of stupidity. We had no map, no tent, no idea how far we would be going, for some reason took no food and went hiking into the Cascades. But until recently that was how Rae and I did everything. We didn’t plan. We just did.sc0024e164

When we left on our grand adventure we had a wish list of places we thought it might be great to see, like the Taj Mahal, Kathmandu or the Pyramids for instance. The sort of places that have a place in our collective consciousness. You anticipate ahead of time that these places will be magical by their reputation. But often times, by far the most magical places you find are those you stumble upon quite accidentally, because you’re so damn cheap. Over the course of our travels there were far more of the latter than the former. The woman from the Jansport store was right of course. Once we got above the trees we saw a speck on a ridge which thankfully turned out to be the lodge.  The interior of the lodge was “rustic” to say the least. But of course none of that mattered because it had a roof.  And….. even more importantly, we found a can of sardines on a shelf. And while we hadn’t brought much else, we did bring my Swiss Army knife and were able to access the contents of the can. We briefly pondered the thought that the sardines might have been put there purposefully by someone who would be coming back later. But that didn’t stop us from devouring them. Then we just chilled in awe of our surroundings, not quite believing our good fortune. Prior to this we had been sleeping in the back of the car in rest stops. Now we were in the mountains watching the sun set over the Pacific.sc0024afcc

All night the wind howled around our lofty perch. There’s nothing quite like the sound of the elements at your ear when you are dry and warm inside. Another thing we didn’t do on a regular basis while traveling was bathe. We would occasionally sneak into a campsite and use their showers but that was the extent of it. Now we had the whole outdoors to ourselves. And the water was, shall we say, invigorating. It was a magical 24 hours and my memories of that day are as clear as the water we bathed in. I dare say if we’d had any food we would have stayed longer. But we had to get back to Everett to pick up our tent. And that night we were again sleeping in the back of the car by the roadside.sc001c2f15

“Most people with ALS die from respiratory failure, usually within 3 to 5 years from the onset of symptoms. However, about 10 percent of those with ALS survive for 10 or more years.” Everyone who has ever been diagnosed with ALS knows this stat. Some sources say 2-4 years but you get the point. This shit doesn’t mess around. Initially you ponder, well, you could be in the “10 years or more” group. But then you have to consider do you want it to go fast or slow? It’s so hard to know what to wish for. I doubt that anyone thinks “hey, maybe I’ll be in the two year group.” At our most recent visit with the neurologist Rae asked the doctor if he thought the disease was moving fast. He paused for a moment before answering. Although I have no broad knowledge base to draw from I already knew the answer to the question. I think Rae did too. I have even been asked by friends if I thought it seemed to have started moving faster. That isn’t the sort of question people ask just to make casual chit-chat. Eventually the doctor said he has seen it move faster but yes in my case it does appear to be gaining ground pretty fast. In its strictest sense this sucks. But on a practical level there are some advantages to having this knowledge. Above all I want Rae to be able to afford to stay in the house after I’m gone. So I don’t want to spend a huge amount of money remodeling the house if I’m not going to get much use out of it. Any modifications we make have to have a broader application beyond getting me in the door and to and from the bloody loo.

February 1st, 2016. Urbana, IL. Warmed up enough for me to go out for a 40 mile ride on the trike today. When we went on the cross country bike ride last year I signed up for Strava (a website and mobile app used to track athletic activity via GPS) so that people could follow our progress each day. If you signed up to follow me you would get a notification every time I logged a ride. This was all very well when we were doing 100 miles a day and averaging 19-20 m.p.h. But things have changed a tad since then. Today I rode 40 miles and I’m not even going to reveal my average speed. If you’re following on Strava you know already. I have been considering deactivating the account because, to be honest, I’m embarrassed by some of the stats. But our good friend Ian (who came on the ride with us) talked me out of it. He said that he enjoyed getting periodic notifications of my cycling activities. It saved him from having to check the obituaries.IMG_9805

People have a variety of reactions when I try to talk.  Sometimes they will stare intensely at my lips, moving their own lips, mouthing what they think I’m saying. Some people just nod and smile obliviously. Some people just talk continuously in the hope I won’t try to say anything. Sophia though is another thing altogether. It’s as if guessing what I’m saying is her task on a game show. And the clock is ticking and she has a limited amount of time. It usually goes something like this. Me: “phlugh blugh flung brah.” Sophia: “You want to eat? No, you want tea? You want, umm, has two syllables, sounds like. Sounds like coffee? You want food?” All the while getting more animated and excited with each guess. Then with a look of smug self satisfaction she’ll announce “Got it! You want to come with me to the mall.”  Then for good measure will add “Damn, I’m good.” This afternoon at the mall we stopped in the food court for a Pepsi and some ice cream. Then between bites Sophia looked up at me and said “you would have hated getting old anyway.” This is an astute but harsh observation for your own daughter to have to make. She is right of course. As a nurse I have seen the toll that the prolonged mental and physical decline of a loved one can take on a family. One by one, faculties leave, till its hard to remember who the person once was. And so much of what happens towards the end is taken from our control.IMG_9762

Is this what I wanted? Obviously not. I want to be there for our kids, I want our grandson to have memories of me. I would see old couples walking in the park and think that would be me and Rae one day. But such things we do not get to choose. However, as I said before, it’s often the things we don’t plan that turn out to be the most suprising. I think early on I may have said I had an admiration for the purity of ALS. How for all our knowledge of the human body there is so little we know about this disease. I think I may have even been pissed off that there was so little the medical establishment could offer me in the way of treatment. But once you get over that you realize how much easier it is to plan your life when you don’t have options. Within the parameters of the ever increasing speed the disease is moving I have been presented with the opportunity to be the author of my own final chapter. And as George once sang “Nothing in this life that I’ve been trying, could equal or surpass the art of dying.”IMG_9739

When we left on our travels I said that we went looking for the perfect place to live. We now live two blocks away from that house that we left some thirty years ago. There are no mountains in our back yard as we had once imagined there might be. No beach down the street or house on a hill surrounded by acres of greenery. But there are people, family and friends, and while it took us some time to figure this out, that’s the most important thing in the world. And whenever I lament my inability to escape from Urbana I think of one of my favorite quotes from a poem by T.S. Elliot:

“We shall not cease from exploration
And the end of all our exploring
Will be to arrive where we started
And know the place for the first time.”
 .
Peace, love and midwives

Ray

The Sacred In The Mundane

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Any dinner guest at our house knows that before we can eat we have to take a picture (or three). One of the first things Jack learned (even before walking or talking) was to look at the camera. I think it started with me taking pictures of large gatherings such as Thanksgiving or Passover but over time expanded to include any meal that was more than just us and the kids. But eventually, as the kids grew and were home less frequently,  when they were home, it became a moment worthy of documentation. I have always thought that sitting down to eat is a special moment in time. A unique gathering of family and friends that should be marked in some way. And since Norman Rockwell is no longer available a photo would have to suffice.

We have been back from the ride over two months now and it has been five months since I stopped working and went on disability. Prior to this I could never really conceive of not working. I mean, what would I do? I’m a workaholic. I often pondered how I would fill my days and just assumed I would work till I dropped. Maybe come up with some major renovation project on the house. But now here we are. It’s not exactly the golden retirement we dreamt of. And as with many things, when the time actually arrived you see it differently than anticipated. I don’t really enjoy breakfast. It’s been swallowed up by the morning ritual of “getting ready for the day.” All contingencies have to be planned for. Especially if Rae is going to work. Clothing I might need if I want to leave the house, food I might want in case by some miracle I feel hungry (which hasn’t happened in a long time). But supper is the highlight of my day. Supper is just that. Supper. Nothing to plan other than what to eat. And really it’s more about sharing the moment than the food. We don’t even have to be interacting. I can watch Rae cook or I can play with Jack. When it comes down to it that’s what I enjoy most about the time we have now. The sharing of it. Everything from eating together to looking at Rae’s face by the soft blue glow of her cellphone as she plays Words With Friends or checks Facebook in the middle of the night when she can’t sleep.OLYMPUS DIGITAL CAMERA

One of the things Rae said early on is that we have to laugh every day. Trying to interpret what I’m saying has become the inadvertent source of a great deal of that laughter. A lot of what goes into understanding what I’m saying is more about knowing the context and filling in the blanks rather than actually understanding what the hell I said. As long as I never change subject we’re good. But go from what’s for supper to say, the upcoming Iowa caucuses and we’re in trouble. “Wait, you want bottled rump with burning panders from the distillery?”

People ask why I don’t use my voice machine. I have been accused of being stubborn and not getting help when it’s obvious that I need it. Maybe stubbornness is a factor. Ok, well maybe not maybe. But each time I let go of something it’s not like I’m getting help till it gets better. Everytime I let go of something it’s gone forever. There is no getting used to a certain level of function and regrouping. Things are always changing. Sometimes faster than we can adapt. My voice (if you can still call it that) is long gone but I still cling to the illusion that the sounds I make can be used to comunicate. My voice was always quiet (like really quiet). Ever since I can remember, people seemed to have had an opinion about it. Even back in school classmates and teachers alike would often call me, “Mr. Mumble.” As an adult, people seemed to be divided into two camps: There were those who found my voice calming and reassuring, and there were those who genuinely believed that I spoke that quietly for the sole purpose of pissing them off. But regardless of where you stood, for better or worse my voice probably came to define me more than any other characteristic or personality trait. It was part of who I was. Soon, the ability to make any sound will be taken from me altogether. Until that time I’m not letting go. Sorry.

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I’m a spoiled brat when it comes to my coffee. Lisa used to be the manager of a coffee shop. I would text her in the morning when I got off work and by the time I got to the coffee shop my cappuccino would be waiting for me just how I like it. To say that I like my hot beverages a certain way would be an understatement. When a cappuccino is placed before me I will pick it up and by its weight alone I will make a judgment. Before it has even reached my lips I have decided whether or not I’m going to like the taste of it. Now of course, since Rae can’t follow me everywhere I go to translate or make shit up (or do an interpretive dance of what she thinks I said), necessity dictates that I be predictable whenever I go out for coffee. So once again my cappuccino is waiting for me when I get to the counter. I must admit that while the circumstances may be a bit of a drag I do enjoy this.

And don’t get me started on hot tea. There is only one way and Doc Brown said it more eloquently than I ever could. There is profanity but if you want to know “The way” click here.

One of the first foods I found myself unable to eat was lettuce. It just kept getting stuck to the roof of my mouth and my tongue lacked the flexibility to dislodge it. When Sophia was getting ready to drive back to school this weekend Rae made her a cheese and lettuce sandwich on fresh pita bread for the road. It looked so good that I had to take a bite. But as I picked it up Rae said “you know you can’t eat lettuce, Ray. You’ll choke.” I held the fresh pita bread, eyeing it longingly. Sophia looked on mischievously and interjected “defy limits,Dad.”

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Have I mentioned we’ll be at Carnegie Hall this Friday?  The MDA is launching a new fundraising platform called “Live Unlimited” and we are one of the families being featured. Living unlimited is going to mean different things to different people. And had you asked me a year ago what it meant to me to live unlimited I’m sure my response would have included something involving vast amounts of cycling. But now I see it as something a little more intimate. While I can still ride, I need Rae to help me get my riding clothes on and off. It’s hard being the one who needs everything and can’t give much back. It’s beyond hard. There is the inclination to think that one partner’s life is on hold while they care for the other. But as Rae said “My life isn’t on hold, this is just the next phase of our life together.” Perhaps to share this time, navigating an unpredictable final chapter, caring, eating, being together. This is perhaps the greatest expression of the human spirit. This is what it means to me to live unlimited.

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Peace, love and midwives

Ray

P.S. The event will stream live from Carnegie Hall on Friday January 29th at 12:30 New York time. Here’s the link if you want to watch. http://www.mda.org/launch

Falling Up

Songs are the bookmarks of our lives. The placeholders for the chapters of our past. From its first note a song can transport you to another time or place. Sometimes it’s a whole swath of life that a song can illuminate. A summer, a relationship, a place you went to school. And other times the place the song can take you to can be a small, private but intense place that no one but you knows of. As Karen once sang “Those old melodies still sound so good to me, as they melt the years away.” On Kibbutz Degania Bet where Rae and I first met there were separate sleeping areas for male and female volunteers. Not to be thwarted we found a small storage cupboard above the bathroom in her room. It was big enough for a small 6 x 4 foot piece of foam mattress. To get up there we had to open the window in the bathroom door, then climbing on the table put our foot in the bathroom window and step up to the cupboard above, close the doors behind us and we were home.cupbourdFor the longest time no one knew where we were sleeping. People knew we were together but our beds were always empty. It was my snoring during an afternoon nap that eventually gave us away. From then on we were known as “the cupboard family.” Our first mutual favorite album was London Calling by The Clash. There is a line in the song that goes “Come out of the cupboard, you boys and girls.” People would often serenade us as we walked by. Most couples have a song that is emblematic of the inception of their relationship. It’s “their song” so to speak. London Calling by The Clash is ours.

Eventually the kibbutz built expanded living quarters and Rae and I got our own room. The beds (I use the term loosely) on the kibbutz were ancient metal frames with a worn out metal lattice that sagged in the middle. They were not the most conducive to a good nights sleep. So we put two foam mattresses together on the floor as our bed. The floor has been our bed ever since. But because of weakening upper body and core strength getting up from a mattress on the floor has not been easy for me for some time. If anyone heard me trying to get out of bed in the morning they could be forgiven for thinking someone in the room was trying to benchpress 300 lb. Some abilities I relinquish voluntarily to ALS. Some abilities pass unnoticed, unmourned. I just find myself one day trying to remember when I last performed a certain task. Like cooking a meal for instance. But with some things I dig my heels in. Determined not to concede, despite often overwhelming evidence that the battle was lost long ago. Sleeping on the floor was one of those things. Rae and I have always slept on the floor. It’s one of the threads that stretch back through time and connect us to the beginning of our relationship. Today we finally bought a platform for our bed.

I visited my closet this morning. It’s not particularly big. It’s a lot taller than that cupboard we first lived in on the kibbutz but the floor space is smaller. It has a couple of rails to hang shirts and pants and a few shelves that I installed, myself, for t-shirts, shorts, underwear, cycling gear, old smart phones I’m sentimentally attached to, etc. If I had to I could probably stand in the closet but there wouldn’t be room for much else. I used to go there every night to get clothes out for work the next day. The majority of clothes I owned required some basic form of manual dexterity to get on and off. They had these things called buttons and zippers so it’s been a while since I have worn any of my old clothes. Necessity is requiring that I take my ALS chic to new heights. Manu bought me a shirt with magnetic buttons. When I take my clothes off before going to bed, now they stay where they land. Not because I’m a slob (although I’m not denying that I am) but because I need to know where everything is when I get up in the morning. And going through piles of clothes is no longer an option. Rae puts my laundry away and her categorizing system is very different than mine. I visited my closet this morning. It was like going home to London. I felt like a tourist in a strangely familiar place.

It’s been a little over two and a half months since I fell off my bike in Phoenix and broke my arm (along with six other bones). To celebrate feeling so good I decided to break it again. I was going up the stairs and tripped. I landed on my elbow. My legs are strong so it wasn’t a balance issue. I was just clumsy. I know I need to be careful and when I come down stairs I always make sure the back of my heel comes into contact with the stair riser. I don’t really have a system for going up stairs. And besides, who the hell falls up the stairs? But even if I had a system it’s hard to be “on” all the time. Luci (who came on the ride with us) and Josh (Rae’s brother) are visiting from Minneapolis. Luci said that I look a lot better than the last time I broke my arm. The fact that that is even a sentence is a problem. On the plus side I’m already on blood thinners.IMG_9509

Life is full of stumbling blocks. Some are physical, some are psychological. Some are trivial and some can seem like the Great Wall Of China when first encountered. I assure you that when I was diagnosed with ALS the first thing that came to mind was not “oh what a wonderful growth experience this will be for me and Rae.” The day before I re-broke my arm I recall thinking about how well things were going.  When I stumble I can no longer control how I land physically. Where I land psychologically is another matter. This month Rae and I will have been together 34 years and married 33. Our relationship has been a lot of things over that time but always perfect has not been one of them. When a relationship is new, its ups and downs tend to be more wild and pronounced. The longer you are together the state of the relationship tends to gradually ebb and flow rather than oscillate wildly. Many years ago I recall a work colleague, whose second marriage had just ended after a little more than a year, asking me what our secret was. “How do you and Rae do it?” She asked. My response shocked her. I said that in the time they had been dating, gotten married and divorced Rae and I had barely been talking to one another.

Relationships don’t have to be perfect to work. We were talking the other day and Rae said that if she had to define our relationship in a word it would be “easy.” She was quick to add that by easy she didn’t mean not hard but easy as in easygoing or relaxed. How we travel is an good example. When we go places we generally have no plan or agenda. We just go. No timetable other than when we have to be back but even that was generally fluid. We have always just made it up as we went along without too much discussion. If I need us to make a detour so that I can get some Starbucks that’s ok. If Rae wants to go on a quest for Tupelo honey that’s ok. I don’t think that being in love means loving someone every second of every day. I think that being in love means that no matter how much shit your relationship might be embroiled in at any given time you never loose faith that it’ll work out in the end.

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When Lisa was pregnant with Jack she asked what I wanted to be called. The grandparents in Rae’s family have always gone by Bubbie and Zedie (Yiddish for grandma and grandpa). Rae was eager to assume the mantel of Bubbiedom. But I wasn’t crazy about Zedie. And Grandpa was just too generic. I wanted something unique to our family. Something only I would be called so decided upon saba (the Hebrew for grandfather). For now we are “Bubee” and “Bahbah.” That’s close enough for me. Most songs bring back a moment from the past. Some songs have a peculiar way of shining a beacon into the unknown of the future. When Jack was first born I made lots of slide shows and kept using “Hero” by “Family Of The Year” as the music. The song has become emblematic to me of the saba that Jack will never know.

I think that like most couples who have been together for a long time Rae and I have really only ever had one real argument. We may have had it a 1000 times over, but only one real argument. If I look back to where we were as a couple 18 months ago compared to where we are now we are more cohesive than I could ever have imagined. You’d be surprised how trivial most things can seem when you’re forced to decide what really matters. It’s like we’re traveling. Things that need to happen just happen without too much discussion. We are on a journey but unlike many previous trips we know the destination. There is however no road map for how we get there. I’m sure we’ll come up with something and it will undoubtedly involve a lot of Starbucks detours and–not to mention–have a bitching soundtrack. We stumbled up.

Peace, love and midwives

Ray

 

 

To Live And Ride With ALS (Part ll)

One of the first blogs I posted back in September was called “To Live And Ride With ALS.” My lofty goal was to answer the question what effect does ALS have on cycling and visa versa. In fact, that was initially one of the main points of the blog. I kind of got side tracked by life. When I look back at that original post, it’s hard not to see the inevitability of what happened. I was falling off my bike on wide open, flat roads with no obstacles. I thought I could overcome these things with mechanical modifications to the bike and prosthetics for my arm. Since we have been back I’ve gotten back into my regular routine of various doctors appointments. I went to see an orthopedic doctor a few weeks ago to see how my arm was healing. He was happy with how the x-ray looked. It showed new bone growth over the fracture so he just said to come back and see him in six weeks. And as we were leaving he added “and try not to fall.” Damn it I thought. Why couldn’t someone have told me that before the ride.

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One of my favorite things about the trike is that when I come to a stop, there I am. I don’t have to clip out of the peddles, I just sit there. I can sit and drink my cappuccino or just watch the world go by or invariably both.  It’s the trike equivalent of idling (but without the greenhouse gas emissions). Got my first flat tire on the new trike. My first thought was to call Rae but then I thought well, what if this had happened while out in the country. I need to know if I can still change a flat. Fortunately the flat happened out by the Temple so I was able to pull the trike inside. My hands work better in the warm. I got the back wheel and the tire off by myself but was thwarted by the valve on the inner tube. I went to see if anyone in the office had a pair of pliers. The Rabbi and his wife (also a Rabbi) were both there and offered to help. Rabbi Jody got the tube off but then my pump wouldn’t work. So while Rabbi Alan went to their nearby home to get a pump from the garage, Rabbi Jody installed the tube and put the wheel back on. After Rabbi Alan returned with the pump he reinflated the tire and my trike was roadworthy again. I mention this incident solely because I’m fairly certain that at some point in the history of the universe a Talmudic scholar somewhere must have pondered the question: How many Rabbis does it take to change a trike tire?IMG_9329

Before I continue I want to re emphasize that any advise I have to offer is based on a study group of one on the subject of a disease that affects everyone differently. With that in mind this is the sum of what I think I think I know about ALS and cycling. A higher level of fitness does not dictate the speed of progression of the disease. However, it does provide a cushion for whatever that speed is going to be. At least in the initial phase of things. After the accident I was fairly sedentary for a few weeks as we drove across country. I feel that I lost more ground in that short time than in the ten months prior. ALS does not respect physical fitness (not even remotely) but it does seem to prey on inactivity. That being said, I think that going gangbusters every day doesn’t help either. Just because you can ride a certain distance at a certain speed doesn’t mean you should. After exercise your body is going to need longer to reset. To maintain maximal ability for as long as possible you have to find a place that you can live with that is below your potential. That is going to be hard for someone who is used to pushing their limits. But you can either voluntarily relinquish the outer boundaries of your capability or they will be swiftly and mercilessly taken from you along with the midrange ability.IMG_9389

Now, let’s talk about cycling and the ALS symptoms that no one tells you about. Excessive salivation and yawning. Both can make for awkward moments socially but also present their own unique issues with cycling. Sometimes my body produces so much saliva I feel like I’m drowning in it. Out on the road what were once snotcicles have now become droolcicles. A healthy application of lip balm before each ride will help prevent your lower lip from cracking and falling off. Now on to the yawning issue. By excessive yawning I don’t mean quantity, although that is an issue, I mean yawning so intensely that it feels like your jaw is going to have to disconnect in order to accommodate the full course of the yawn. These are not yawns you can stifle, and come in groups of way too many. One moment a person is having an intelligent conversation with you and the next moment they’re staring at your esophagus. You try to reassure them “No, really. I find that all totally fascinaaaaaaaaaaawwwwwwwnnnnn.” After about the sixth time I think they have a hard time not taking it personally.  You’d think this wouldn’t be an issue out in the middle of nowhere on a bike. But it always seems to happen when I’m approaching a cloud of bugs. There I am happily enjoying the passing scenery and then suddenly I’m involuntarily doing my best impersonation of a humpback whale harvesting krill.

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ALS has succeeded in doing something that no other force in the world has been able to do. It has made me a sociable rider. In general I can go several years without riding with a single other person, outside of organized races. Friends would occasionally ask if they could come for a ride with me. I was never sure if they were serious or just making conversation so I would pause, not knowing how to respond. Then Rae would save me and tell them “you wouldn’t be able to keep up.” Sometimes they would persist. “Oh, he’ll slow down for me, we’ve known one another forever.” Another pause until Rae would again save me, adding more bluntly “No he won’t.”

bike 3As you can imagine from the above photo we were the cycling safety people’s poster children. Until recently this was probably the last time I had ridden with Sophia. I would stand in the pedals and Manu would hold on to me as we rode. I have been told that I was seen riding around the neighborhood in the rain with all the kids, steering the bike with one hand and holding an umbrella with the other. I don’t recall doing this but lack the credibility to deny it. Then the other day, out of the blue, Sophia asks if she can come for a ride next time I go. I wasn’t sure if she actually wanted to ride or was put up to it by Rae to keep an eye on me. Either way, don’t ever say no to a kid who wants to ride with you. Don’t even hesitate. Not even for a nanosecond. And if you are lucky they might come with you again.

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Many moons ago before Lisa could drive I was giving her boyfriend a lift home. They sat together in the back seat. Her boyfriend was on the high school wrestling team and was talking about all the things he had to do to maintain weight to compete in a category. He spoke highly of a person on the team who held the weight loss record for losing seven pounds in a week in order to compete in a certain class. Ever the weight conscious one Lisa seemed impressed by this. So I chimed in that I had once lost ten pounds in one day when I rode a solo double century. I thought Lisa would be impressed but instead, all she said was “You don’t count dad. You’re a freak.”IMG_9280Over the winter I’m riding to maintain a certain baseline level of ability. Come Spring it takes five rides (30, 50, 40, 80 and 100 miles respectively) to work up to 100 miles and that’s where I stay for the rest of the year. Winter has been kind so far but the furthest I’ve ridden since our return is 50 miles and I’m becoming unsure how much, if at all, I’m going to be able to expand upon that come Spring. So the question is; what exactly am I training for? For the first time since I can remember I have no ridiculous summer rides planned. As I mentioned in a previous post, I keep a journal. One of my yearly rituals each New Year is to make predictions for the upcoming year. I have been looking back at them over the last ten years or so and am suprised by their quaint naiveté. Most of the time my predictions were way off the mark. Even with things that seemed fairly inevitable at the time. The future is like that. That’s why they call it the future. Now looking into the future is like looking through binoculars and adjusting the focus. The further down the road we get, the more into focus what lies ahead is becoming. The jury is still out as to whether that’s better than quaint naiveté.

Did I say I have no ridiculous summer rides planned? Ok, so anyone who knows me well enough will know that’s not totally true. There are certain things I would like to do and will plan to do until my body notifies me otherwise. Generally that takes about three or four memos (and a concussion) for me to pay attention. My respiratory capacity is significantly diminished. At first I just attributed it to the accident, broken ribs, partially collapsed lung, etc. But while those things have resolved, my lung capacity does not appear to have recovered from the effects of diminished use. So if anything, I’m riding to breathe. To fill every reachable alveola with O2 that my weakening diaphragm and intercostal muscles will allow. I used to be fond of saying that I live to ride. Now I ride to live.

Peace, love and midwives

Ray

One Year

It was December 15th of 2014 that the possibility I might have ALS was first suggested. It was confirmed, well, as much as you can confirm ALS, a couple of weeks later. Then of course we had to tell people. We thought it better they heard directly from us rather than social media. Telling people was surprisingly draining. You never knew how people were going to take it. Some people, Rae and I told together if they lived close enough. Others we had to tell by phone or Skype. I had to limit myself to telling one person per day. It was all I could handle. Rae once told three people in a single day. I don’t know how she did it. For me just saying the words “I have ALS” was difficult to get out. I would often choke as I tried to say the words and it sometimes took several attempts. Since that initial flurry of telling people last January I have not repeated those words. Not once.

Telling my partners at work was hard. I told them I thought it would be for the best if I stopped taking call and delivering babies since it was my hands that were most affected.  Instead I would just work in the clinic focusing on prenatal and gynecological care. I didn’t have a timeframe for how long I would continue to work but suggested I work for a year or so and see where we were at the beginning of 2016 and reevaluate then. There was nothing special about the timeframe of one year it just seemed reasonable at the time. And to be honest I thought I was going to be the guy with ALS that just kept on going. I made it to August.

Some of my work family

Eating is always an adventure. Rae and Sophia have independently developed a set of subtle hand signals to indicate to me that I have food hanging off my face. Lisa is more direct and will announce across the table “hey Dad, you have a chunk of cheese in your beard.” I’m sure it’s just a matter of time before they just start to hose me down at the end of each meal. I’m always the last to finish eating, by far, and the kitchen is generally being cleaned up around me while I valiantly chew on. The other night I was so worn out after supper that I couldn’t even be bothered rearranging the dishes in the dish machine after everyone was done cleaning. I just sat there, watching others put the dishes in the washer. Fighting this subconscious battle between one side of my brain that wanted to yell “Noooooo! That’s not where the bowls go. And even if they did, they would face the other bloody way” While another voice in my head kept trying to quietly convince me “Let it go Ray. Just let it go.”

Manu (our son) and I often went into the mountains together. One of our first wilderness experiences was in Colorado near Ouray in 2004. We climbed Mount Sneffels, our first 14,000 ft mountain together. We hiked in and camped in the wilderness then summited the following morning. There are many things one has to know about overnighting in the back country and many of them revolve around bodily functions. The hole you dig has to be a certain depth, the place has to be a minimum distance from any body of water, you can’t just leave toilet paper there to blow around, etc. We told our two eldest kids on New Years Day of this year that I have ALS. Lisa called her husband and later admitted her first thought was that this might be something she would have to worry about her son Jack inheriting. Manu just got up and left the room. He teaches high school biology in Chicago and had taught his class about ALS during the first ice bucket challenges. Figured if people were going to take the challenge they should know a little about the disease. When he didn’t come back I went looking for him. I found him in his room. All he could say through his tears was “who’s going to teach Jack to poop in the wilderness?”

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I used to get so impatient with Rae as she selected an outfit before going out. And I never understood why my opinion was sought. Offering the asked for opinion is generally a no win situation. “No, really. The first outfit you tried on was fine.” Or “Ok, yes. It makes you look fat. Can we go now?” But now, even if I had a half hour head start Rae can still get ready faster than me. I can still dress myself (not really). I’ve developed a sort of ALS chic wardrobe. Magnetic zippers, elastic sweatpants, mittens, infinity scarfs, loose tops that I can slip on over my head, zipper inserts where my laces used to be, slings for my arm for when no one is around to put my hand in my pocket for me.IMG_9184 - Version 2 The theme for this years Hanukah gifts was in Sophia’s words to “shishi poopoo-ify” my ALS wardrobe. Pictures to follow. When I’m alone I have one shot at getting dressed. If I have to do it again the whole morning is gone. The most amazing thing to me really is how quickly I have let go of the need to dress myself. Helping me dress (or adjusting things I’ve attempted to put on myself) has just become part of everyones morning routine. I hope it will be as easy to let go of other things when the time comes.

I told my sister in London about the diagnosis via Skype. It was a half hour call of which I think 15 minutes was spent just staring in silence at one another. People often say they don’t know what to say. But I’m the one going through it and I don’t know what to say either. Our daughter Sophia sat there in silence when we told her also. Then she got up and said she was going for a walk. When she came back she announced to everyone that she just wasn’t going to deal with it until she had to. At the time I recall thinking she was in denial. But she now often matter of factly takes care of the little things that I think no one else notices. Like asking someone for a cloth napkin when we were out because there’s cheese and crackers on the table and she knows I would like some. There are certain foods I should no longer be eating, at least not without a drop cloth or at the very least someone trained in the Heimlich maneuver in the room. Cheese and crackers are on that list. But Sophia has my back. The quiet ease with which friends and family have integrated accommodating my rapidly evolving needs into a new normalcy has done a lot to allay my fears about many things. Sometimes I think we’re our own worst enemy when it comes to imagining the future.

IMG_9161Our house is almost 100 years old and unfortunately does not have a downstairs bathroom. To put in a chair lift going up the stairs would not be cheap. We had a contractor come look into the possibility of  putting on an extension to the house but before he even set foot inside, the term “prohibitively expensive” was uttered. A house this old has to have lead paint somewhere and removing that is not a trivial endeavor. There is a small sun room that might possibly accommodate an indoor portable handicap shower (easy to assemble without any tools apparently) and our daughter Sophia, who will graduate next year with a degree in Environmental Studies, thinks that an indoor composting toilet is the way to go. We have looked into moving into or renting other houses but when it comes down to it, this is our home. It’s where we raised our family. Every nook and cranny of the house says something about us. This is where we have had countless Passover Seders, deck gatherings, kids’ birthday parties. There are visions of our past everywhere you turn. Now I also have to contend with visions of myself, immobile in a chair in the living room. My future self staring back at me like a ghostly apparition.

When we told people about the diagnosis you could tell the people who had no idea what ALS was. They would call back the next day after they’d looked it up and say well, fuck. To be fair, I also looked it up myself just to make sure there wasn’t some another type of ALS out there. One that would go away with antibiotics. One year. When we were up in Chicago for our anniversary in January we passed a bus stop adorned with a poster that posed an interesting question. “Where will I stand this time next year?” I’m guessing I would normally have just walked on by but in this instance I asked Rae to take a picture of me next to it. Another of the rules Manu had to learn for hiking in the wilderness is that legs should always be a minimum of a 18 inches apart for pictures. We call this the “stance of power.” There would be no pictures of anyone I was related to on a mountaintop with their feet next to one another. Sorry, not happening. You need to look like you just conquered a peak, not like you need to take a leak. For the picture in Chicago I consciously planted my legs slightly apart. I probably overdid the stance of power thing but it was a statement. The world of ALS was new to us and I was thinking that in one year I’d be happy to be standing anywhere.

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But here we are, one year down the road. Still standing. A little bruised and battered and worse for wear and tear but standing none the less. The thing about mountaineering or biking adventures is that you have to make an effort to go on them. Our life has become a daily adventure but this adventure is one that has come to us. And keeps coming.

Peace, love and midwives

Ray