Living "On Quad Time"

That was the phrase Michael and I often used to describe his pace of life and that is what I found myself remembering when I was sitting behind net at the Hawks v. Sharks game last night.

It's one of the gifts he gave me and one of the things I am realizing I particularly miss in his physical absense. It is so rare for an able-bodied person to have the experience of having to (getting to) live life so slowly. It took a lot of getting used to for me, but some of the most wonderful experiences of my life came directly from that enforced slowing down. My entire ability to care for my father in the way I did at the end of his life, and the friendship he and I developed, came directly from the way Michael influenced my life.

As I walked through the packed United Center last night, I found myself reliving little moments, like glimpses in my periphery, of times I would go to games with Michael. Being with him was like living in a parallel universe right in the middle of this one. "In the world, but not of it." We would enter through the player entrance, wheel through the bowels of the United Center's lower level (he would wheel extra slowly when we passed the Hawks locker room...comically slowly...to increase my chances of "seeing something good") and then we'd make our way through the empty UC halls to the vendors just as they were opening for a slice of pizza before the game.

And as we took our first bites, the gates would open and the sea of people would enter.

People don't look for wheelchairs, as a rule, so maneuvering through and around crowds does become a safety issue. As a result, we found little islands of space where we could and stayed put until the crowds moved on. This gave us a lot of time to just sit and observe.

Observe.

Michael did a lot of that in his life. Remember, he was a hockey player and his powers of observation were very well honed. Anyone who can read hockey plays on the ice like he did doesn't miss much. Put a man like that in a chair with nothing else to do but observe and you would be amazed at what he picked up on.

So at the game last night, I was IN the crowd. In the middle of a row. In the middle of lines. In the thick of it.

But the whole time I could remember that other level of existence...the parallel universe I used to share with Michael on quad time.

And I'm just now starting to realize that I still have a quad-time consciousness. That may be why it's felt so disorienting to be in life without him here. I just don't know how to re-enter "normal" society, so mostly I haven't. I  haven't even wanted to because a lot of it just doesn't look that appealing to me, if I can be honest with you about it.  Michael's being a quadriplegic taught me to be slow, to observe, to digest and appreciate so much of life in a way that I didn't know how to before. And what had to be learned ultimately became a way of being that I preferred. It's a way most healthy, able-bodied people never get to experience and I think they are all the worse off because of it.

After Michael died, I had a rough go of it without the weekly permission he gave me via his disability to simply catch my breath and reflect on what was happening in my life. I used his presence in my life as my opportunity to live, if even for just a few hours, in a mental space that did me a world of good.

But it wasn't that it was easy. Even going to the games was a huge endeavor. Michael had to monitor every single bodily function and it was such a blessing when things went well. What goes in, what comes out...nothing could be taken for granted. Was it going to be okay to have that piece of pizza? Would sharing a beer be okay? I used to bring digestive enzyme tablets to the games just so the next day would be a little easier for him.

And while his way of life was incredibly hard and so cumbersome, there is something to be said for having to be so deliberate and conscious of every choice one makes.

I read some time ago about an order of monks and how some of them were getting upset because there seemed to be too many cereal choices at the monastery and the excess was a concern as a potential distraction and a temptation for the newer monks.

It made me laugh but I totally understood it. And while I used to be one who wanted infinite choices, I've come to see the folly in that. I'm becoming like the old monks. In many ways I'm becoming like Michael.

Due to his disability, Michael mostly had the life choices of an ascetic monk, when he had choices at all. But rather than staying bitter about it (although he did have to pass through that stage), he incorporated that into his spiritual growth and used it as a means to gain freedom.

He used his limitations as a path to freedom.

Keep that in your mind from here on out because if you are living in a human body you are going to have more, not fewer limits over time. Just consider finding freedom in that.

That is what I was getting schooled in for the past several years.

Michael and I spent an afternoon with him trapped in his van when the ramp jammed. It was one of our most fun afternoons but the truth is he was trapped in his van on a hot summer day. Quads can't regulate their body temperature very well. We take sweating and shivering for granted. Being trapped in a hot van was a very real problem that could have been life threatening. Had he gone into shock I have no idea what we would have done. And yet, I don't remember anything but us having fun that afternoon. And that night, waiting in the rain for the mechanic to come back when the ramp stuck again and kept him out of the van...still we sat and laughed.

Michael had a plaque in his room that said, "Live in your cell as though you were in paradise."

He did that.

So when we would go out for a root beer float on a hot day and that was THE event of the afternoon for us and I say it was heaven to do that one simple thing, I mean that in a way that I know a lot of people aren't REALLY going to understand. What went in to making that root beer float possible...that afternoon out of bed and out of the house possible...it elevated everything to levels I am still trying to comprehend.

There simply were no ordinary moments with him.

And that doesn't mean that everything was amazing every second or that we never fought, or got bored, or irritable, or tired, or any of that. But it means that when you are forced to slow down that much it gives you the opportunity to remember that you are sitting next to someone who couldn't even feed himself for two years and here you are with him sharing ice cream in a place he could actually enter because they have ramps to buildings now. And if you can't recognize a miracle when you are sitting there eating ice cream with one then the guy with quadriplegia isn't the one with the biggest problems.

But to the outside world, having THE event of the day being getting an ice cream float in a run down deserted Greek diner...well, it's kind of lame, isn't it? For most people it would be torture. And neither of us ever, ever pulled out a cell phone, or engaged in anything other than enjoying that root beer float. We didn't multitask together.

And that's probably why I don't blog a lot any more. I think I've become pretty boring. My life, too simple. My thoughts too...too estoteric maybe? I don't have that much to report. 

Michael's quadriplegia gave me the opportunity, the outward excuse, to live very, very simply. Having so few choices was a path to freedom, not just for Michael and I as individuals, but for our friendship. There was nothing to do but BE together most of the time. We rarely went to stores together, we went to ONE movie in 20 years, almost never had a tv on. The cost of doing a lot of things was simply too high so we mostly listened and observed. And when his father was alive we would go to the nursing home and we'd sit with him. Those were some of the most tender hours of my life.

And that's what it was. Tender freedom, right there in the middle of life...sitting off to the side with a piece of pizza and knowing that you had absolutely everything you needed and more.

He changed my life. He changed me in ways I am still coming to understand. I'm just not sure what it means for you and I, reader of these words...do I have relevance for you...is there anything of value that was given to me that also has significance for you, even vicariously...I don't know. I really don't know.  It's weird to be out of a mutual conversation and just here with a keyboard...is this life of mine and all the things I went through these past few years just one woman's history, for herself alone, for her quiet times in reflection as she goes along her monkish way or is there more...something to pass on...and what...and to whom...

Do we pick this up again, blog writer to blog reader...is there somewhere you would like to go?

Comments

[Kate]

Yes.

[Peter]

Observe. That is the word that jumped out at me here. In my not so humble opinion, as long as you observe with your accomplished eye and report with your native and well honed insight, what you write will be worth reading.

But get that "amorphous general reader" out of your head. Repeat after me: I have something important to say. I know people who need to hear it. (REAL people or a SPECIFIC group or class of people.) And this is the best possible way for them to hear it.

If true, blog away. If not... go pick up your camera. Either way, you're showing people what they otherwise would not see.

[Nancy]

Laura,

I love the simple life you are leading. I long for my life to be simpler. Please write more about that!

Hugs,
Nancy

[erin]

I find myself thinking of all the people Michael touched, and then of all the people you have touched, many of them through your blogs. Somehow the people who needed to hear what you had to say, who were ready to take what you brought here have shown up. Maybe your gig is just to hold the beacon light out?

[Nick Winter]

Let me just say that I found YOU, Laura, because of someone's blog post that linked to your blog. And I know finding you and Michael has been instrumental in me getting to where I am today.... so I would say blogs can be LIFE CHANGING. Blog away!!! I learn a lot from your posts. I also love how Michael can still, in a certain sense, be a mentor to us all, through you and your sharing of experiences/conversations with him.

[Laura]

Thank you ALL for your words here. I was thinking about a Ram Dass story about Gandhi cancelling a demonstration at one time and some of the people close to him said he had to go through with it because so many people had come to join him. His reply was that his commitment was to truth, not consistency.
In fact, the last words Michael spoke to a group were also from Gandhi, as he was leaving on a train and the crowd was asking him for just a few more words. He wrote on a paper and handed out the window, "My life is my message." And so it was with Michael. And so it is with all of us, really. We can only reflect truth as we understand it and that is going to shift over time and always be an imperfect approximation because we are all human. I so appreciate you all being here with me and that you welcome Michael's presence as part of that. There is just so much more to say. His courage, strength and power, particularly in the weeks before he died were so far beyond what I have been able to convey so far. I'm still trying to digest it all myself, really. He can't not be a part of me going forward. He was just too powerful, not an ordinary human. That sounds so over the top but it's so true. His example is one that will guide me for the rest of my life.
So, you get a package deal here. Thank you for your openess to that.

[Crystal]

I found (well searched for) you after reading a piece, which I believe was by you, about discipline. It was the first time I have ever read an article about discipline that resonated with me, so I had to have more, and this is where I've ended up, and stayed for quite a while reading. What you have to say is extremely important to me and I expect to many others as well.

[Laura]

Crystal, thank you for these kinds words, and for making the effort to find me and taking the extra step to express your appreciation. That means more to a blogger than you might realize. More writing coming before long, as soon as a window of time opens up for it. Hope to see you again...