Read This And Live
Living means more than merely staying alive.
(Note: portions of this piece appear in my new book, Read This Or Die!)
I was at home in the kitchen, thumbing through videos on YouTube.
As I watched, I started feeling sick, experiencing the same sensations as when I’m about to have a migraine, which have plagued me frequently all my life. A few seconds later, I started vomiting in the kitchen sink.
This had never happened before. Walking back to my chair, I turned around to sit, and the next thing I remember is the very frightened face of my wife hovering over me, her voice urgently speaking to me. I cannot remember a word she said. I was having a seizure.
Ah, life with Parkinson’s disease.
According to Lynn, she came into the kitchen and found me rigid as a board, slipping out of my chair, violently convulsing—with a towel stuffed in my mouth. Apparently, I realized I might bite my tongue off in the process of whatever was happening and took measures to prevent myself from self-harm. She kept asking whether I was okay, then realized I was not. Something was dreadfully wrong.
Grabbing me by the arms, my wife tried to keep me from hitting my head on the table, asking me if she should call 911. She pleaded with me to speak to her.
I have no memory of this.
I do remember being sucked into a very dark, scary place and then—nothing. Just a gaping void in my memory. I don’t remember becoming conscious again.
The next memory I do have is sitting on the sofa with Lynn next to me, stroking my arm, looking concerned.
After a period of time sitting on the sofa, I was able to tell her who I was, what our address was, what the date was, and even who the president was. According to her recollection, I was making jokes.
I recall what happened afterward in bits and pieces.
The next few days were painful. My back hurt, my hip hurt, and my head hurt. I had terrible headaches and felt miserable. My body was overcome with a feeling of being drained, as if I had just run a marathon (or what I imagine that would feel like — I have never actually run one).
The whole episode left me somewhat depressed. It was more than a little scary, because I realized that at some point during that experience, I had felt as though I was dying. And in that brush with my own mortality, I understood once again: I do not want to die, I want to live.
Over the past three years, the entire world has undergone a massive shift, experiencing a global pandemic that changed the way many people lived their lives.
It was no different for me.
In many ways, this change caused me to shrink into a smaller life and use it as an excuse for receding from the lives of others. We were social distancing, right? We were wearing masks. That meant nobody had to see how bad my tremors had become. Nobody had to see how I often can’t walk throughout the day, how much I was degenerating.
My new book is titled with the admonition that you must “read this or die”.
In the past, I would have wanted to write something that demonstrated how I faced a challenge, discovered a way to overcome it, and succeeded in that pursuit. Then I would show you how to do the same. But…
While that can happen, mostly it’s just not how life works.
We’re all going to die—whether you read my book or not.
The only difference between you and me is perhaps I’m a little more aware of that fact. I have no way of knowing what your experience is, but I do know that life eventually ends, and no matter what kind of answer, solution, thinking, or exercise I give you, I can’t prevent that from happening to you—or me.
If we are fortunate, we are all going to become old enough to see our physical vigor diminish and struggle with the frustration of a gradually waning mental acuity. That’s the course of all life: we start out weak and fragile, make something of ourselves, and end the same way we came into this world—that is, vulnerable. It’s the way of all flesh.
A deep part of my will to live, I’m sure, is a basic survival instinct, shared by any organism doing what it’s designed to do. But it feels like more than that.
This thing I call me—the spirit, the soul, the mind— wanted to keep going, even when I was lying on the ground, convulsing. As horrible and agonizing as the experience of living can be, I prefer it to the alternative.
I’ll never forget the look of fear on my wife’s face as I came out of the seizure; I realized that when I exit this stage of being, it’s going to hurt more people than just me. In fact, my pain will come to an end, but the pain of those around me will continue until their stories conclude. Our lives are not just our own; our stories are inextricably woven in the fabric of others’ lives.
The choice to fully embrace life goes beyond merely not dying.
Just existing is not enough—I have to keep living. This is the choice to live, to not only endure but bring all of who you are, whatever that means, to each and every day for as long as you can.
To show up just the way you are and be okay with whatever happens next.
To let yourself quake and tremor, to invite even the most embarrassing parts of yourself to the conversation of life, without hiding anything.
I don’t have many wise words these days, and I’m not quite sure where my health will be even six months from now, let alone in a year. But I do know what it means to live and why it’s important to keep showing up as long as I can.
What’s important is that we live as fully as we can, whether we are underneath the wings of a hang glider, climbing a rock wall, or riding around in a wheelchair.
My goal these days is to embrace life for what it is: a strange and seemingly unlikely occurrence, a bizarre but exciting and mostly enjoyable experience that can also scare the crap out of you.
In most situations, we have a certain amount of choice regarding how we process our experiences, even the hard ones. We can decide to imbue these moments with meaning, or we can despair about the potential pointlessness of it all. We can look for what’s good, noble, and pure, choosing to be okay during the times when we would rather say, “This is a load of shit.”
That’s living: not denying the harshness of reality but finding a way to move through another day in spite of the difficulties we all face. To live is to bravely face the darkness yet again and not be consumed by it.
You may be wondering where I stand now in regard to what I believe and the foundations upon which I base my life.
In regard to Parkinson’s, I wish it hadn’t been dumped on me. But at the same time, I recognize the gift it gave me: a true lust for life.
In spite of the difficult circumstances the disease brought me, it has taught me a valuable lesson. The situation “is what it is”. And yet… I prefer this experience to the blackness of the void; that is, I prefer being to not being.
Whether I’m destined for a quickly degenerative condition that takes me deeper into the abyss, or for the streets of heaven, the point is to recognize that all we have is what’s right in front of us. For me, that means making the decision to keep living for as long as I can, rather than dying before they put me in the grave.
As a friend recently reminded me, this is what Jesus meant when he said “the kingdom of God is here and now”.
Life is to be experienced—not in resisting what is, or denying the truth that stands right in front of you, but in embracing all of existence. Try to live as much as you can.
Through this book, I’ve taken you on the same journey I experienced, and like the snake swallowing its own tail, you could say we’ve come full circle.
My quest began by stepping deeply into doubt, agnosticism, atheism, and nihilism. I floundered and prospered there for a while, gleaning what I could from each of those beliefs and carrying their lessons with me. I have, as the Israelites did, spent my own time wandering in the wilderness and come out in a land very much unlike the one I inhabited before.
And it’s worth noting that I put my faith back in God, but in a very different way.
These days, I’m more comfortable with the unknown.
I am more likely to trust this thing called God without understanding exactly why or how. I am less likely to make definitive statements about how “he” works.
Faith, like the science of neural pathways, is more of a mystery than we pretend to believe, and I’m okay with that. I actually find it comforting.
To trust in what we cannot see amid an incredibly confounding existence, in its own way, makes great sense to me. I’ve reached a point, finally, where I can hold the known and unknowable with both outstretched hands, ready to receive whatever is next.
This is my life now: fewer answers, greater trust.
I don’t know what tomorrow will bring.
I don’t know whether my brain will ever heal, when I might die, or how much of my faculties I will have left when I do. I don’t know whether I’ll achieve everything I want to do in this life. And that’s okay. I don’t need to know that. “Consider the lilies of the field, how they grow: they neither toil nor spin . . .”
And that is just what I will do.
While the flowers grow and the birds sing, and the world keeps turning, I will try to pay attention to it all.
I will try to experience as much as I can with as little worry as possible, to truly enjoy life, to marvel at the sheer mathematical insanity of my even being here.
I will try to not worry about what comes next and choose today to live.
I hope and pray that you will do the same.