The Bread Of Affliction

As Archimedes once observed, a lever long enough could move the Earth. I was not trying to move the Earth. I was just trying to raise the kiddush cup (ceremonial wine cup) to my lips. I may not be able to raise my arm but by using my elbow on the table as a lever I can raise my hand with a cup to about face level. But at times it feels like I might as well be trying to move the Earth. Once the cup is raised, then comes the tricky part, getting it to my mouth. What little ability I have left to swallow is contingent upon my neck not being tilted back or forward. Many times I need someone to steady the cup for me and bring it to my lips but for the Seder I wanted to do it by myself. The wine glass hovered shakily about six inches or so from my face. I stared it down. Determined to show it who was boss. Once I move the cup from its apex I have little control over it and it goes where it goes. I aligned my mouth in the general direction I thought the cup would fall and released. Contact.

All drink the first cup.

Ray and Rae April 22, 2016-1It’s about six miles from our house to Sinai Temple. On Saturday Rae and I would often walk to services. Okay, I know what you’re thinking. What kind of a day of rest is it when you walk twelve miles? But I wasn’t riding a hundred miles so it qualified as a day of rest. My favorite part of the walk was on the way home when we would go through Mt. Hope cemetery. We tried to walk different ways through the headstones each time, reading them. There was something about the thought of a life being summarized in a few lines on a piece of granite. All that living synthesized down to a couple of dates and kinship titles. I felt I owed it to people to read their headstones. Then one Shabbat on the way home from services as we were enjoying a meditative stroll through the cemetery, Rae suddenly announces “And I don’t want my headstone to say ‘and Rae his wife.’ That would really piss me off.” Duly noted I recall thinking.

April 1st, 1988. Kibbutz Matzuva, Israel. I was alone that particular Passover. Well not exactly alone, I was in the Kibbutz Matzuva dining room with several hundred kibbutznicks and their families, but Rae wasn’t there and she was the important one. She had flown back to New York to be with her Bobe (grandmother) who had had a heart attack. So there I was participating in this massive Seder. Although at this point in life “participating” meant just trying to make sure I turned the pages of the Haggadah at the same time as everyone else. As we began the festive meal and I was no longer absorbed with trying to look like I knew what was going on, my thoughts began to wander. I thought of Rae in Bay Shore on Long Island where I imagined her Bobe, who had now been released from hospital, directing everyone to prepare for the Seder. Then I had this strange feeling about people all the world over doing this exact same thing–preparing, eating, bringing their families together for the Seder–many of them, I imagined, thinking of Israel. I mean, here I was participating in a Seder in Israel. How many people have dreamed of this? How many people have been able to fulfill that dream? I had a feeling of connection that I had never experienced before, a feeling of being part of something much bigger than myself. Naturally, anyone raised in a Jewish household would say: “Well of course, that’s the point.” However, coming as I did from a household of no discernible religious affiliation this was for me a moment of great enlightenment. How foolish of me to feel alone.

All drink the second cup.rarray israel

Raising a wine glass is like climbing a mountain. Once you’ve attained your goal there is a tendency to relax. You want to enjoy the moment.  Thoughts of the descent or putting the glass back down are far from your mind. A Passover Seder is meant to be for the children. It even begins with the Biblical verse “You shall tell your child on that day, saying…….” Yet depending on how much you want to include, their duration can test the patience of even the most dedicated adult. To give our kids a sence of ownership, about ten years ago, we had them start leading our Seders. I found some of the recordings of the blessings I had made for them and put them on my iPhone. My voice. It sounds so alien to me now. But playing these recordings was the only way I was going to be able to participate in the Seder. Our eldest daughter Lisa was reclining in the chair next to me and was leading the first Seder with Jack on her lap. After the blessing over the fruit of the vine I took a sip of wine from the kiddush cup feeling very pleased with myself. But my victory was short-lived. As soon as I took the cup away from my lips I lost control of it. Down it went and emptied onto Jack and Lisa’s lap. I wondered if it was too soon to recite the ten plagues?

Wine stainsSpeed was all I cared about while riding my bike. I was vaguely aware of the scenery around me obviously but only in regards to how far away a certain landmark might be. I could pee without getting off the bike and without making a mess. Obviously a lot of practice and careful consideration of wind speed and direction are critical to the success of this maneuver. But I spent a lot (a hell of a lot) of time on my bike. I would stop to rehydrate. And then only begrudginly. As I have mentioned before, I hate how slow I ride now but due to this a strange phenomenon has occurred. I have time to absorb my surroundings. I have taken to pulling off the road in the middle of nowhere and just sitting there on the trike. Trying to embrace one of the limitations of ALS that I dreaded the most. Having to pay attention to things. You know, there really is some beautiful stuff around us. Everywhere you turn. Has that shit always been out there?IMG_0895Ha lachma aniya – The bread of affliction. Our son Manu led the second Seder. At the beginning of the Seder, we break one of the sheets of matzah and call it the bread of affliction. It represents the meager sustenance of slaves, the meanest fare of the poor, the quickly produced food of those who had to make a hurried exit. But man, do we snarf it down. I did not try to eat any matzah on the first night. I had watched as piles of it disappeared but thought better of trying any myself. The Seder tells a story. One that starts in slavery and ends in freedom. The matzah later represents that freedom, the bread we ate when liberated from Egyptian bondage. On the second night I decided to go for it. I asked Manu to break off two small pieces of matzah and spread about a half inch thick layer of butter on them in the hope that would make it possible to eat. I took a bite but despite the butter it still disintegrated into a thousand  pieces in my mouth. I quickly excused myself and went outside where I hocked it up over the side of the deck.

All drink the third cup.

OLYMPUS DIGITAL CAMERAJust as the Seder represents a journey so does this blog entry. I started writing it with my finger and I’m finishing it writing with my eyes. When I look at my Dynavox eye-gaze computer screen the letter or area on the desktop I want the functionality to occur becomes highlighted and I can then select them. That this technology exists is amazing. That I need it is a total mindfuck. Manu spent the weekend programming appropriately inappropriate phrases into some of the pre-sets. I spent the weekend uploading Leonard Cohen into the music player. Rae spent the weekend rolling her eyes at both of us. There’s a learning curve in getting used to the computer. Once calibrated to your head position you just move your eyes. It’s quite the ocular workout. Although in a room full of people when I’m constantly looking back and forth between the computer screen and the people talking I often find myself staring intensely at a person’s forehead. Expecting it to light up and for them to suddenly be able to understand everything I’m thinking.

IMG_0653In English our names may be spelled differently but in Hebrew Rae and Ray are spelled the same way (ריי).  On Kibbutz Degania Bet where we first met we didn’t know where we were working on any given day until the work list was posted the night before. In those early days we spent a lot of time working together in the watermelon fields. At supper time the heads of each department would come around to the person making the worklist with requests for the number of supplemental workers they needed for the next day. I often heard them ask for “Ray veh Rae” (Ray and Rae). The fact that we had the same name was still something of a novelty to everyone. At the time I barely spoke any Hebrew but the sound of the words “Ray veh Rae” popped out of any conversation. This was who we were at the beginning and this is who I want us to be for perpetuity. That’s all our headstone needs to say. ריי וריי  (Ray veh Rae). That is the most concise synthesis of our life’s together that I can think of.


Perceptions are everything. Our perceptions of the events going on around us can shape our reality more so than the actual events themselves. It’s all about how you interpret the events. What’s a piece of matzah?  That same matzah that is initially held up as being emblematic of slavery and suffering is by mid Seder magically transformed to represent the joy of liberation. What’s a dandelion patch? A bunch of weeds or a meditation retreat. Alright, so it took twenty years to notice the dandelion patch. What’s in a name? Ray or Rae are just that. Names. But Ray veh Rae summarizes a shared life that is so much greater than the sum of its parts. Perceptions are everything. What’s a Seder? The telling of a story and its relevance for the ages is the message: that no matter how difficult your circumstances may seem, no situation is insurmountable.

All drink the fourth cup.

Peace, love and midwives


14 thoughts on “The Bread Of Affliction

  1. I wish I could have been there for Passover this year but I was traveling back from a visit with my Mom in California.


  2. It may interest you to know that among the earliest “look and write” interfaces was a system put together on an Apple II for Bill Flygare here in CU. Art Gaylord and Jim Avery concocted it, and Bill wrote his last papers using it. In 1979-1981, it seemed even more amazing (comparatively).


  3. With all the craziness going on in our world and community right now, this piece is so comforting! We make our lives so stinking complicated, and sadly it takes circumstances like ALS (or any other illness/tragedy/whatever) to pull many of us back to what is really important (or maybe it’s just me – not trying to speak for everyone). Thank you again for continuing to share with us – your words are a blessing to all.


  4. This blog is such an act of determination and love. The spirit that flew you through fields of flowers unawares, now patiently holds you in one spot to pour memories, observations and humor out through the fields of technology. Peace and ease surround you.


  5. You are such a phenomenal writer. You truly have a gift. I visited with my co-worker this week who is also diagnosed with ALS and I think of you both often.


  6. Hey Ray. Ditto on all the above comments.

    Have you figured out how to interface your typed words with the Mac app which reads written text out loud? I still hear your original melodic voice as I read your words. I’m quite sure I always will.

    Love to you all.


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