All Things Are One

When pain is pathologized as only opportunity, it disavows a basic human truth. It is certainly true that life’s worst moments hold the greatest opportunities for growth. But when we believe it is the only choice, we lose our connection to humanity.

Thinking that pain and suffering happens because it is a step on the path to a better life is reductive at best. Is that what life is? Learning your lesson? Your new perspective, your new appreciation for life should mean it was all worth it? Even that phrasing, “worth it”, yuck. Life is the invaluable. Something cannot have value unless it can lose value, which life cannot.

The products of pain and suffering do not make going through it any easier.

Continue reading “Humanness”

As I sat down to write this, a tree removal service pulled up right across the street and fired up their wood chipper. Sounds about right.

I’ve had a wood chipper in my mind for the last 3 months. Except the wood chipper was in the form of 4 little words. Your cancer got worse.

I’ve lived with chronic leukemia for 2 1/2 years now. In July, I was told for the first time that the number of cancer cells in my blood had increased, not decreased. For the last 3 months I’ve had that lodged in my chest, unable to take a full breath. It wasn’t a cloud hanging over my head, the cloud was in my head and it was a hurricane. That’s right, a hurricane wood chipper.

It’s been hard to reign in the spiraling nature of all the what if’s this news created. One question led to another which led to another. I actually had to make a flowchart to organize them all. Is this medication not working anymore? Why is it not working? Am I resistant? Did the cancer mutate? What’s the plan if it’s higher again? Does it depend how much higher?

And then, there was the part of me who was trying to be all cool and nonchalant about it. “It’s probably just a blip in the road, ya know”. “It’ll go back down again in October.” It’s funny to look back on and realize that some part of me thought I should be able to take this news in stride and just brush it off. Cancer got worse, no worries man, all good here, don’t really think about it too much. What a load of crap. High expectations much?

But even if it did go back down, I still had to address my quality of life issues. I’ve kept track of my days for the last 11 months. I rate them on a scale from 1-10, 10 being the best, 1 being the worst. I haven’t had a 10 all year. The breakdown looks like this. 50% are bad, meaning less than 5. These are the days where it’s hard to do anything at all, I really struggle, crippling fatigue, brain fog, body aches, headaches etc.. 40% of the time are what I call “capable days”, meaning those side effects are still there, but they are manageable. And 10% of my days, I actually feel good. Meaning the side effects are minimal and I don’t have to push myself through them very much at all.

One of the more aggravating, but also amazing, nuances of CML is that there are currently 5 types of treatment. They’re all the same class of drug (TKI) but they all work in slightly different ways and have slightly different side effect profiles. I remember learning about The Paradox of Choice in an economics class in college, and let me ya tell, it is very real indeed. These choices leave me questioning myself for sticking with the current medication. I always wonder, especially on the bad days, “would life be better on another medication?” It haunts me knowing that maybe it doesn’t have to be this way. But it’s equally haunting to think that maybe this will be the best it gets.

My need to make this decision has been picking up steam for the last year now. The need to know has been growing with each day spent being side effected. I go over and over it in my head, analyzing all scenarios, trying to come up with how I can handle it better. But all roads comes back to this question of, is this quality of life acceptable?  So do I live with what I know? Or do I switch?

The catch to making this decision is it’s impossible to know how my body is going to respond. There is no guarantee it’s going to be better. And there’s a chance it could be worse. I’ve been paralyzed, terrified to find out that answer. I have a certain number of moves I can make in terms of treating this disease. And to spend one of those moves for it to backfire and be worse, how demoralizing.

In the last 4 meetings I’ve had with my doctor, switching medications has been the primary talking point. The options are discussed and I feel almost ready to make a decision. I build up and build up and then I decide to stay put and keep things as is. Then when I inevitably feel like shit, the process starts itself over again. Well what can I be doing better? I’m doing everything I can? Yes? Okay well maybe I should switch.   I’ve been waiting to be fully on board with the decision. While the incessant nagging of “it could be better” ate away at me inside.

Over the last 3 months I’ve reckoned with that fear of switching and it being worse. And I’m still not okay with it. But I’ve realized that I’m less okay with remaining how I am. In all of my thinking and planning about how I would feel on the new drug, I was discounting the only information that I actually did have, how I felt today. Everything I’ve read about how to make good decisions says some variation of the same thing, “Leave your emotions out of it. Don’t make kneejerk reactions. Wait till you have more information.” But sometimes all you have is how you feel. Sometimes knee jerks actually show you how you really feel. And sometimes you will never have enough information to feel like you’re making the right decision.

But not making a decision is making a decision. And it had gotten to the point where the only thing more terrifying than the unknown was staying the same.

 

Last week my doctor called with the results. My cancer got better again, the number decreased. What a relief. Oh man I was so happy to hear that news. The fear escaped me as I took my first full breath in months. But I still felt a lingering let down because I knew that the same old side effects were still waiting for me. In that moment on the phone with my doctor I made the decision to switch medications. At the time I felt 40% sure I wanted to switch, 30% sure I wanted to stay, and 30% sure I had no idea what I wanted to do. That felt good enough. There was something inside me that needed to switch. I just had to. I need something new. Even if it’s worse, I just have to know.

Doing the right thing rarely involves knowing how things will work out ahead of time. If you wait until you’re 100% certain, or even 75% certain, it’s probably too late. And there is such a thing as too late when it comes to quality of life.  Making important decisions is less about knowing the results will be favorable and more about knowing you’ll be able to handle it if they aren’t. And I don’t mean handle it as in take it in stride. I mean handle it as in knowing that new challenges are going to arise, while remembering that’s exactly what you so badly needed. Challenges arising after a difficult decision has been made is not proof that you made the wrong decision. It’s proof that you made the right one. It means you’re not restricting the essential force inside of you that needs to change. You’re going to be dragged kicking and screaming into some of the most important changes in life. You will not going willingly. But being sure is the sacrifice required for moving forward.

It’s been a weird, stressful and downright painful 3 months for me. I haven’t written any posts, not because I haven’t wanted to. I’ve been burnt out on drawing conclusions and learning lessons from “my cancer experience”. And instead of pushing through that I decided to just let myself crash and tune out for a bit.

Meaning making is a proven way to process and work through struggles, trust me I’ve read Man’s Search for Meaning twice. It’s a way to create purpose around the struggle, which can lead to better life satisfaction. Oddly enough though, actively not trying to create meaning around my cancer experience allowed me to feel the full brunt of just how bad it actually is. And that’s what ultimately pushed me to make the switch. I was listening to myself in order to respond. Not listening in order to feel. I was using my experience solely for the purpose of trying learn from it.

I noticed during this time how my reflections had morphed into an assessment. I was measuring how good my reflections were by the conclusions I was drawing from them. But that’s not reflecting, that’s assessing. Big difference. In there somewhere was my desire to prove to myself that all this time living with cancer wasn’t going completely to waste, that I was getting something out of it. And I definitely have gotten a lot out of it, and changed for the better. But when you’re always going in to it looking for something to pull out, it can start to feel like a transaction. And life’s experiences are so much more than that.

It’s so easy to subscribe to the idea that we have to make something out of our struggles. It’s deeply embedded in our identities’. That’s our story, the underdog overcoming the odds to become successful. But there’s something so ridiculous about the belief that we, as individuals, and as a society, will just continue to grow exponentially to infinity. There’s something missing from that narrative. And I think it has a lot to do with the impact that transactional view of the world has on our souls. It denies a sense of realness. Our experiences are meant to be felt, not used in service of a “better life”. This mindset makes it seem as though our life experiences are inputs into an equation. But the solution never changes. No matter how skewed the inputs are, the solution is permanently growth.

The point is not to stop reflecting on how we can change for the better, but to extricate ourselves from the need to constantly prove that our lives only have meaning when we can spin them in a positive light.  If suffering is only viewed as an opportunity for growth we completely miss how it actually makes us better people. We’re so eager to race through it and come out the other side better for it because we think that all the heavy stuff, the grief, the heartbreak, the bodily pain, the trauma, is what will crush us. But what crushes us is the requisite denial of lived experience.

It’s said that suffering is grace. And that’s the God’s honest truth. But what I tend to lose sight of is that first word, suffering. There is no grace without suffering. And it’s not suffering and then grace. Suffering IS grace. Grace doesn’t feel good. In fact, the most graceful moments of your life will probably be some of your worst. But what grace, and therefore suffering, reveals to us in those moments, is the beautiful horror that this is life too. And sometimes life just hurts.

Haven’t I suffered enough? I glower upward at no one in particular. Palms open. Arms splayed. Lying in wait for the reverberating echo from the one who knows.

“No” I hear. Or do I say it?

Why me? I ask, dejected.

“You know why” he sighs in response.

I collect no money as I pass GO.

Why do we ask questions we already know the answers to? Is that how we hope? Is that what hope is? Asking the same question but expecting a different result? At what point does hope become insane?

Chest heaving, breath stinking hot with resentment. Face puffed with fluid. Eyes hating their openness. Gaze unfocused. Unsupported head threatening to roll right off.  Neck knotted. Collarbone concaving. Upper-back straining. Stomach gurgling. Skeleton shaking. Hamstrings coiled. Low back jammed. Cinder block legs. Dead weight. Mind cloudy. No pulp. Zero concentrate. Fried. Splat. Desperate but unable to focus on anything else. Heavy fog. Heavy body. Sorry what’s that you said? Saturday afternoon. July the 4th. I glance to the window, thankful the black out curtains are blocking the sun.

Chance. Go back three spaces.

Why do we ask questions we already know the answers to? Is that how we accept? Is that what acceptance is? Knowing the answers but needing to ask anyway?

Earth’s core walks me on a leash. Constantly yanking down. Horizontal, be horizontal. I make my mark on the day by defiantly leaving a spoon in the sink.  “You can’t say I didn’t get out of bed.” I roll on to my stomach, releasing my gravitational burden into the mattress. Down. Down. Down. The giant hand presses me into the ground. Sleep. Please let me sleep.

Community Chest. Doctor’s fee. Pay $50.

Asking questions like “why me?” is such a trap because the only satisfying answer is because you deserve it. The real answer of, life is suffering, is so unsatisfying. Like what are you supposed to do with that? “You just have to accept it”. Okay, great. But, like, why me?

I wake up startled and realize I’m at the table again. He slides me a folded piece of paper. “Really? Again?”I ask. He crosses his right leg over his left. His eyes rise to meet mine. He cocks his head to one side, blinking silently. I push off from the table and stride aggressively to the door. “He’ll see.”

4 days good, got it back. Crash. 7 days bad. Building. 3 good days. Slow decline back down. 5 days, bottom. There goes a month. My life has been on pause but somehow it’s still slowly slipping through my fingers. Has it been on pause? Think of all the good you’ve done. Got it. Coasting good, 2 weeks. Over-extended. Dragging. Don’t admit. Smack. Crushed. 6 weeks bad. Not all bad. 60%. No consistency. Guessing game. Is it that bad? Is this bad enough? Believe me. It’s bad. This sucks. I don’t want it to be bad. Push. Feeling feisty, I’m in control. Dragged back. Get back in your place. Nope. Never again. Hope. Disappointment. Solitude. Maybe. Nah. Probably shouldn’t.

I am the race car, doing laps around the board but unable to buy any property.

I’m constantly grieving the body I lost. While trying to appreciate the body I have.

I’m constantly trying to validate my aches and pains. While knowing I have to try to push through.

I constantly want to get rid of it. But know that I can’t.

I’m constantly reminded of my high expectations. While feeling like I’ve already lowered them so much.

I’m constantly trying to just be. While feeling like I have to do so much.

I’m constantly aware of how much I’m capable of. While being trapped in a body attacking itself.

I’m constantly listening to my body. While never liking what it has to say.

I’m constantly blaming myself for how I feel. While knowing that I shouldn’t.

I constantly want to be in control. While knowing I’m anything but.

I’m constantly reminded that tomorrow is never guaranteed. While always having to rest.

I’m constantly trying to put a positive spin. While also trying to accurately portray how much it sucks.

I’m constantly trying to figure everything out. While knowing that I’ll never figure it out. While trying to accept that I don’t have to figure it out.

I’m constantly trying to be okay with everything. While feeling like nothing is okay. While knowing that it doesn’t have to be okay. Okay?

I’m constantly trying not to be sad. While my shelved dreams stare back at me with dusty eyes.

I’m constantly trying not to be angry. While screaming into my pillow.

I’m constantly wanting to be understood. While not having the energy to make people understand. While knowing that nobody will ever fully understand.

I’m constantly trying to be hopeful. While also trying to accept.

I just want to plan my way out of this but would probably have to cancel.

The old man beckons me onto his porch into the chair opposite his. “Nice day we’re having sonny” he says. I look around not having noticed. I tune in and out for the next few minutes as he tells me about the family of robins that frequent his front yard. “What is it you called me up here for?” I finally ask. He smiles at me “no reason”.

Go directly to jail.

What questions like “why me” assume is that there is some grand scoreboard in the sky. Why me reasons that since a lot of bad stuff has happened that certainly something good has to happen next. That I deserve that. But you can’t deserve the good without deserving the bad.

My hands immediately type out something like, “what I didn’t realize was that all the lessons I’ve learned through the struggles is the something good I’ve been looking for”. Because of course I would say something like that.

Fuck hope. Fuck acceptance.  I thought these things would sustain me in my struggles. But they’re just more standards I feel like I’m failing to live up to.

Fear, the very thing hope is supposed to dispel, is exactly what feeds it. Hope’s main motivator is fear of the ONE and ONLY thing that is guaranteed to happen to each and everyone one of us. To hope is to delude.

When hope is reduced to its’ pure essence, it’s nothing more than a belief in impermanence. Except we conveniently forget that impermanence cuts both ways. We don’t talk about hope when things are good. No one tells you to be hopeful when things are good because you just are. Part of what makes feeling good so good is the subconscious expectation that it will continue. Good fortune compounds hope.

We only become aware that hope turned into an expectation when we’re disappointed. Misfortune is always a surprise.

Hope is tragic irony. That’s what makes it so important, and so dangerous. When you need it least, you have it. And when you need it most, you don’t.

I come to in a checkout line. I’m sliding my items on to the conveyor belt. He raises one eye-brow, “is this everything?”, he asks, his hands continue to shuffle the items through the scanner. “Yeah I think so” I reply. His eyes shift downward to the side as if he’s getting ready to shrug. “Are you sure?”

You have been elected chairman of the board. Pay each player $50.

Hope becomes insane exactly when it’s the strongest, which is when you let it go. The fear is so strong that the mind will not stay with it. Like when people on their deathbed describe seeing flashes of their loved ones. It goes to somewhere the pain isn’t. The mind knows there is so much pain, but in that moment of letting go, in that moment of hopelessness, it is finally able to tap into the source of the thing it just let go.

Hope is an idea, you see. And ideas are just thoughts. Which, by nature, are impossible to hold on to. It’s like Inception. When you try to access hope you can’t really remember how it got there. And when you look to someone else for hope you will always slightly reject it, because you know it’s not yours. That’s where the “you just gotta have it” comes from. It’s impossible to pinpoint.

The appearance of hope has little to do with why it exists. It exists because all other options have been exhausted. Change is the only thing that’s left. Change is the only thing that ever was.

My doctor walks in and shakes my hand, “how have you been feeling?”. I look down, all of a sudden interested in the roll of white paper I’m seated on. “how do they get it to roll like that….” I navigate the sanitized luminescence to find the check out desk. There he sits, hands folded, sucking on a peppermint. “So three months puts us at…”

I am the thimble. Voted out of its own game.

Nothing makes hope weaker than “just needing to have it”. Hope is shallow when hopelessness is dammed. The bright side is only bright if the dark side is dark.

Hope appears as a bright light but looks more like a flickering bulb. Acceptance appears as an embrace but looks more like shoving off. Hope is perceived as warm and fuzzy, but producing it feels icy and sharp. Acceptance is perceived as being okay with everything, but doing it feels a lot like reluctance and resentment. Holding on to hope is like sliding down a rope ladder with a tight grip. Accepting whatever comes your way feels less like surfing the waves and more like being pummeled by them.

These bright connotations of nice words like hope and acceptance distract us from their very substance. They exist in mutually dependent relationships because we feel like half of life is a problem. Life is miserable. Life is embarrassing. Life is insecurity. Life is pain. Life is disappointment. Life is death. None of the things we do as a result of suffering ever get rid of these truths. The appearance of hope has little to do with why it exists. The perception of acceptance has little to do with how it is done.

I think we have to renounce these ideals we aspire to live up to at some point. If we don’t challenge the standards we set for ourselves then what are we even doing? I’m finding that my honesty about not feeling hopeful or accepting, has oddly made me a little closer to them. That feels like an answer to me at the moment.

In his essay titled “Joy Is Such a Human Madness” from his Book of Delights, Ross Gay meditates on a question one of his students once asked him.

 “What if we joined our wildernesses together?” Sit with that for a minute. That the body, the life, might carry a wilderness, an unexplored territory, and that yours and mine might somewhere, somehow, meet. Might, even, join. And what if the wilderness – perhaps the densest wild in there – thickets, bogs, swamps, uncrossable ravines and rivers (have I made the metaphor clear?) – is our sorrow? Or, to use Smith’s terms, the “intolerable”. It astonishes me sometimes – no, often – how every person I get to know – everyone, regardless of everything, by which I mean everything – lives with some profound personal sorrow. Brother addicted. Mother murdered. Dad died in surgery. Rejected by their family. Cancer came back. Evicted. Fetus not okay. Everyone, regardless, always, of everything. Not to mention the existential sorrow we all might be afflicted with, which is that we, and what we love, will soon be annihilated. Which sounds more dramatic than it might. Let me just say dead. Is this, sorrow, of which our impending being no more might be the foundation, the great wilderness? Is sorrow the true wild? And if it is – and if we join them  -your wild to mine – what’s that? For joining, too, is a kind of annihilation. What if we joined our sorrows, I’m saying. I’m saying: What if that is joy?”

I awake once more to a vision of his table. Except I’m alone this time. I sit down and wait for him to come tell me what to do. An unknowable amount of time passes.  “Maybe he’s not coming.” I wait some more. Eventually, I give up, and begin to write.

Feeling good is overrated. You can trust me, I’m qualified to say that. We often mistake the cause for the effect. The cause meaning why something happened. The effect meaning what happened. Are the effects of feeling good actually caused by feeling good? Or do we just believe that’s the case? I’m confused.

Expecting to feel good all the time is expecting too much from yourself. Yet good is our north star, our gravitational center. Is feeling good normal? Or is it good? Or is normal good? It’s gotten so confusing that we say we feel bad by saying we don’t feel good. Is good simply the absence of bad?

We’re so convinced that we should feel good all the time that we believe we deserve to feel good all the time. Who promised you this?

Continue reading “Death by a Thousand Should’s”

Continue reading “The Edge”

To feel something deeply is to “feel it in one’s bones”. Feeling something in your bones is like walking into your childhood bedroom. It reminds you of something. It brings you back to a half-remembered beginning. A bone-deep feeling is a bridge to the truth. How interesting it is we say it that way!

Besides holding up our skin, bones follow a pastry shop credo, the good stuff is on the inside. Sourceful and spongy, bone marrow exists seemingly injected into our divine scaffolding.

Bones protect marrow. Marrow house stem cells. Stem cells produce cells. Cells hold DNA. DNA contain genes. Genes make life. Life is evolution. Evolution is survival. Survival means struggle.

The tutelage of hardship feels so truthful because it reminds us, to live is to struggle. For proof, simply look in the mirror.

Continue reading “In Our Bones”

There are a lot of loud, compelling voices out there right now. The more we pay attention to outside voices, the less we hear from ourselves. I’ve been hesitant to write because I’ve found silence to be more additive and nourishing than anything else lately. I don’t want to add to the detraction. But I also feel a responsibility to offer whatever I can. So here we go.

Continue reading “We All Fall Down”

Think back to when you were a little kid. Do you remember making a wish and blowing out dandelions? The magic was only just getting started when our breath dislodged the seeds from the flower. Continue reading “What If I Told You…”

“I don’t have leukemia, I’m just here to get some tests done” I replied to the nurse. He smiled, patted my arm and walked out the door.

“Are you sure?” I asked the doctor I had never met before. He had to be wrong.

“Am I gonna die?” I sobbed as my Mom held me on the hospital bed after the doctor left the room.

“Should I make a will?” I asked my parents later that night.

Continue reading “Cancerversary 2”

Life speaks loudest in tragedy. The devastation has a knack for propelling us into now.  Isn’t it interesting how getting flattened by life makes everything seem so urgently unimportant?

Continue reading “Tragedy’s Refrain”