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.

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.

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.”

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.

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

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.For 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.

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.

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