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
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