There is No Spoon. ~ Neo

If it is possible for me to have the capacity to do so, I think I figured out what happened these last two weeks, now that I’m finally pulling out of the swamp of it.

It’s not typical for me to go quite so dark, which isn’t to say it’s not appropriate, understandable, or even expected, but it was both surprising and a little frightening to me.

So, of course, being me, I look for WHY, instead of simply accepting that I could have a couple of (very) bad days during a 5 month course of chemo treatment for Leukemia.

But, I digress.

I’ll start with another story that leads me to validate my hypothesis.

In November, I got into a bad fight with my Dad on the phone, a period some of you readers may remember. Feeling accused, embattled, and belittled by my father, I spent an evening feeling as though the rug of my identity had been pulled back, and I stood again as the raw teenage fuck-up. Feeling defensive, and “bad,” and unsure of myself and my needs or boundaries. Unsure I was allowed to have any, and sure that if I did, I wasn’t allowed to express them.

I spent a few hours like that. A shamed animal. But it didn’t quite fit. Just as these couple of days/weeks of quick-sand depression haven’t felt quite right.

I met up with some of my peers that night, and went home, and as I lay in bed, still seething from the attack, I remembered something I said aloud then and wrote here: I am awesome.

The interaction with my father had stripped from me all the work and identity I’d been laying groundwork for in the last decade. A decade my father has no idea about. The person who I’ve become, the person I’ve struggled to gain every ounce of self-esteem to be. He doesn’t know what I forgot: I am worthy.

It is this very same aura of interaction that played out with the white coats during my recent eye-infection hospital stay. I felt belittled, unheard, and dismissed. I felt, again, stripped of the knowledge of myself, of the reality of myself, and again was back to the timid, mouse of a girl, feeling chastised and shamed.

Well. Fuck. That.

Although it took me a few weeks this time, instead of the evening it took in November, for me to remember who I am, I am finally coming to see straight again.

Part of this has been you. Several of you have reached out to me and told me what my words mean to you, telling me how you are making changes in your life based on what my writing inspires in you, telling me that you are inspired to examine your own life and choices as a result of me examining mine. You’ve told me I have value, and I’m once again starting to feel it.

It’s amazing that outside forces can have such a drastic influence on how we feel – or I feel – about ourselves. But, they do. And sometimes they’re fleeting, a moment of twinge as someone says something callous or inaccurate, but are easily brushed aside by a few repetitions of the phrase, “That’s more about them than it is about me.”

Sometimes, you’re so emotionally depleted already, and so shocked by a scary and sudden situation, that a room full of doctors telling you that your reaction to a drug might be invented, that your decision to take care of yourself is going to be a fatal one, that what you are doing is wrong, that it sweeps away the whole of what you’ve built inside yourself, and around yourself as markers of esteem and identity.

And sometimes that void where your self had been, and the blackness of the “you” you thought you’d overcome through years of friendship and therapy, becomes all you can see. A pit of despair and desolation. Stripped violently clean of all intimations of who you really are, and who you have become.

Perhaps it’s fitting that during this time, I lost my wallet, and with it my ID, my identity.

The unfortunate part about that hole is that you can’t really recognize that it is a hole you’ve fallen into, off of the path of “Who You Are.” It just looks like the hole that is, always has been, and always will be. There aren’t alternatives to the heaviness, the weightedness you feel.

And yet, even in it -- this time -- I could feel moments where it just wasn’t right. This pit of despair didn’t fit properly this time. It is a hole too small for the actuality of who I am and who I have become, and indeed who I will become.

Those chinks and pinholes in the depths grow with the mirroring you guys give me, eventually. Eventually.

And so the pit falls away. I don’t “climb out of it;” Like Neo, you realize, There is no spoon. This is just the Matrix, and this reality isn’t real, and it crumbles like so much sodden cardboard.

Reality forms as your eyes adjust, and you touch your arm and leg and face, and you see the history upon which you’ve built, and you see the community which has gravitated in a loving arc around you, and you see with evidence and conviction that you are valid, worthy -- and that dissociations from this truth are only temporary. 

On and From This Mortal Coil

My mom told me she bought the book The Year of Magical Thinking, Joan Didion’s memoir of the year that her husband died and her adult daughter lay in a coma, about to die.

I’m not sure how to take that information. But my mom said she wanted to see how someone could turn that kind of grief into wisdom, or something that didn’t drown her, or at least something that could be spun into art, like a strand from Rumpelstiltskin. 

When I was 19, I had a breakup that shattered me. I had made a very drunken, public display of humiliation of both myself and my boyfriend that alienated a large group of friends and caused me and everyone else, including my suddenly-ex-boyfriend, to sort of revile me.

I spent a week without eating solid food, drinking only Dr. Pepper and smoking only Marlboro Reds (his brand) on the front stoop of the house my parents still shared. I was shell-shocked. I was numb, demoralized, heart-broken. I began to compose suicide notes on the computer (why not hand-written, I don’t know).

Then, my brother, Ben, said something very important to me: “I don’t want to be the kid in school whose sister killed herself.”

It was what I needed to hear. I got it. I got the isolation and selfishness of suicide. The clawing temptations to end something that begins something in the lives of everyone else you know. I couldn’t do that to him. I got it; and it saved my life. 

In the fourth year, the senior year of college, when all my classmates and roommates where heading toward graduation, and I was heading to the bar and failing out, I was also heading toward the prospect of returning to the home my dad now occupied as a divorced man. He and I had a tumultuous relationship at the time (not unheard of for us), and in retrospect, I think part of my self-destruction and manic partying/numbing was to keep me from thinking about moving back to that house with a man I was afraid of. Part of it, perhaps, was to even make things so chaotic that I couldn’t be allowed back to the house – that wherever I ended up would be safer than with him.

That place ended up being a psych ward for two months. Which, … was not pleasant, but kept me from him. And, in the end helped me to straighten out enough to pull some wits together to be able to move back in with him and my brother at the end of that summer my friends were celebrating their new adult freedom.

As I consider the closing of this cancer process, I have been nudged by this memory more than once. I have a fear of repeating the process of that destruction – knowing, as I do, that I will be returning to a job that makes me feel small, and, I fear, to the general pall of lostness and crippled joy.

This fear, these feelings of fear that I will repeat some self-destruction in order to avoid that which I label as diminishing, crushing, hopeless (as with returning home 10 years ago), has dissipated a little in the few days since it's appeared, but I acknowledge it, and tousle it around. Is this why I don’t want to do round 5 of chemo? Or why I stopped my antibiotics last week, under the reasoning that they were affecting my liver and causing me to sleep 14 hours a day?

The other day, I used a tool a therapist taught me in order to gauge my decision to do the fifth round or not. I asked my deepest self, on a scale of one to ten, how much did I internally support going for the 5^th round? The answer was 5; 5 of ten. Not high. But, then I asked the converse. How much did I internally support the decision of not doing the 5^th round? Answer, 2. Even less.

So, no. I don’t want to do this round -- Who would? – but I believe in that path more than I believe in not doing it.

I’m going to the doctor today to look at my eye again, and I’m going to have to fess up to having stopped the antibiotics (though, by the way, I’ve had more energy since I stopped them…even though the eye really hasn't improved). I’m scared that because of the chastisement my oncologist gave me when I left the hospital during the eye-infection debacle -- about playing it straight, and following doctors’ orders -- she’s going to revoke my 5^th round privilege, as apparently there were other doctors on the Chemo Approval Board who thought that if I was being such a petulant patient, then maybe I shouldn’t have it … but, she told me pointedly, she'd stood up for me, so, basically, play nice, and don’t let her down or make her eat her words.

Great. Now I have your reputation to worry about? Or to worry about not getting treatment that I need because I fucked with treatment I didn’t know I needed?

There’s a lot of chatter here. A lot of brain chaos, and a lot of crying lately. But, in the end, it’s all a choice. Either I am choosing to make decisions that support living, or I’m not. I can make those decisions no matter what job I hold. And I can hold the talisman of my brother’s brave words to me as a reason to keep putting one foot in front of the other, to endure one more antibiotic or round of chemo, to make one more phone call, to wash one more dish, to write one more gratitude list, to craft one more blog – because I still don’t want to be that girl.

And, god willing, I’ll never have to be. 

Adulthood 101

Somewhere along my way, I was having a conversation with a snowboard instructor. He said that most people attempt to learn themselves, as they go, and thus when they come to him, he has to retrain them in the correct ways to do the sport, and unlearn the bad habits they picked up from their own trial and error.

When I had my depth hypnotherapy session on Thursday, we/I came to an interesting statement: It’s not my fault that I don’t know how to be an adult. And that I would both have to forgive myself, and allow myself the patience to learn.

Most of us are sort of thrust into the world with little idea of how to navigate it, and based on the resources we have available, we make choices, which then make habits. Like the snowboarders, some of these habits have to be broken, because they are eventually causing more harm to us than good.

Taking responsibility for myself and my life has never formed itself as a habit. It has been “easier” to make decisions by default, allowing the clock to run out, so a decision is made for me. Or to eek by on the path of least resistance and least gain, and measure out a mediocre and dissatisfying life. It’s been that way since grade school, making moderate efforts that achieved pretty good results, simply on the fact that I had wits about me.

But, the “real world” (whatever made that phrase popular, I’ll never know; is there a fake one? are some more real than others?) doesn’t reward of half-assedness. All that I’ve ever read about success or achievement has been predicated on firm and consistent effort, on perseverance, and on taking responsibility, since, really, no one will do it for us. (I’ve written some about this limbo non-adulthood in my most frequently read blog post -- likely due to its titillating title -- “Magical Accidental Orgasm,” and that was some time ago, yet still stands true.)

What my friend said the other day about creating a life worth living implies, no, necessitates taking responsibility. And for a long time, I’ve beat myself up for not being a persistent, consistent person. Lashing myself for being a half-asser, for starting things I don’t finish. … Instead of allowing myself to learn how to be another way.

These are just patterns that have become habits. They are not irreversible. But I first have to forgive myself for not knowing what I don’t know. It isn’t my fault that I don’t know how to save money and invest in a 401(k). I am not an inherently broken person because I don’t have longevity on my resume. It is not a hangable offense to not know how to have an intimate relationship based on mutuality, trust, and empathy.

The offense is in not making effort to change this. And, so, slowly, I do, and am. I excavate this shame, show it to the light, let the facets of belittlement and lies burn off in the sun, and lay it to rest, as I call you up and ask you, Hey, how do you file taxes properly? How do you know how much to put in a savings account? What are your systems of checks-and-balances that keep you moving forward and taking action on your own behalf every day, and not sinking into lethargy and Facebook?

If I want to live, and I do, then I’d like to learn how to live differently. It won't be the easy, sliding by way, but that easy sliding by way has become more painful than helpful now, and ultimately, it isn’t how I want to be, or who I feel myself to be.

As the phrase goes, “This isn’t an overnight matter,” but the small action of holding myself and my history with compassion rather than derision is likely to help the process. 

The Patron Saint of Good Enough

I had lunch with a friend today who suggested that maybe this isn’t the chemo round where I holster my gun and step out into the High Noon sun. That maybe this isn’t the round where I shoot rainbows from my tush, or alight gently on the calm waves of serene acceptance. Perhaps this is the round I slog through. Perhaps this is the round where I am precisely where I’m at emotionally and spiritually, and that this is exactly, perfectly okay.

A few people made some surreptitious phone calls to me yesterday -- “just to say hi” -- after reading my blog. For which I am grateful. And grateful that I have this as a mode of communication. But, yesterday afternoon, I also placed a bunch of phone calls to trusted friends and left a bunch of voicemails that said, “I’m having a hard time; can you call me back?”

Then, I made a call to coordinate Sunday plans with a friend, and even though it wasn’t one of my “outreach” calls, she and I ended up on the phone for about an hour, most of which was spent talking about some stuff she was going through. And, don’t you know, I felt better afterward.

I still did call my friend who’s in both cancer and recovery worlds, and she had some really good advice for the “Dark Night of the Soul” periods of cancer drama. I asked her how you charge up for these things, how and why you keep going when you’re so tired and defeated and demoralized. She said, You have to create a life worth living for. 

If all of life was how it's started to look recently – chemo, mortality statistics, hospital beds, ER rooms, lab draws, platelets, eye infections, rude doctors, side effects, isolation, fatigue, acute solemnity – then SURELY, what would there be to fight for? Why am I fighting so hard for a life that looks beige, taxing, and unending?

So, create a life worth living for. One which brings life and color and laughter and perspective and deep lungfulls of air back into the picture. If even for a minute.

I told her I’d been to an improv class last Sunday, and I’m signed up again this Sunday. In fact, another member of the group emailed me after class to suggest I go into their advanced class, so I asked the facilitator, and he said sure, I could come to the advanced class, check it out, and potentially audition, as they’re a performing group, … and have, like, real shows.

I’m trying, guys. I am. I convinced my friends to go see the zombie rom-com last weekend, and it was awesome. I contacted my band friend, and she’s out of town now, but yes, we’ll connect. Today, I took out the keyboard the temple leant me, and, after the normal piano setting, had a blast messing with the percussion and pipe organ and steel guitar ones. I make a mean beat. And I laughed.

Tonight I’m going with a friend to a zen talk of some sort, something to get me out of my house and into the world, even if it's not quite my bailiwick. Tomorrow, I’m going into the city to check out a car I might actually buy (it’s cheap, and my financial friends have helped me square if this is feasible, and it is!). And in the evening, head to the art opening of a school friend of mine with another school friend of mine.

Sunday is improv, and then an afternoon with my friend who’s a CPA who'll help me do my taxes, since I sort of had a melt-down on the website the other day, and called her in for help.

A life worth living, piece by aching piece, putting it back together. And, I know, this is just for now, what I’m able to do now with my energy as it is. It’ll be less after the chemo, and it’ll be more once that’s done. The cancer will come back, or it won’t. I’ll be able to deal with all this, or I won’t.

But I don’t have to prise myself to be anything or feel anything other than I am. I don’t have to show up to the nurses with my grin they’ve become accustomed to, and my good patient t-shirt. I can be cranky and crabby if I need to be. I can be resigned and deflated if that’s what’s going on. The good soldier routine worked – and was true – for a time, but it’s not what’s true right now. 

Right now, every ounce of un-depression is fought for, and every single phone call is a life raft. 

Tinker Tailor Soldier Seeker

I saw my chiro yesterday, who’s really more like a know-it-all of everything, so I trust him with his opinion and my care. So when I asked him if he thought I should have my final round of chemo, he poked a few areas of my body, and said that it’s showing that I’m making cells alright, but that I’m not killing off the old ones effectively, so that, Yes, he thinks I should have the final round.

I just emailed him to ask how a final round of chemo actually helps in that regard, because won’t that simply tax my system further, and create an even weaker “killing” system?

I don’t know. I just know that this is so hard. That I’m so tired, and I feel so beat up, and beyond what I feel capable of withstanding to spend a week in a hospital and a month watching blood counts do things, and hope, just hope beyond fucking hope that this all does anything at all.

You know, I still have a 40% chance of living according to their statistics. It’ll be 40% until the 5 year mark when my chances get higher. So, it’s not like I feel out of the woods, or safe. And when I’m not feeling safe, why do I want to put myself in a situation (hospital) that makes me feel even more out of touch with myself and my life, my serenity, my safety.

I don’t know yet. I’m not making any decisions today. I have to hear back from my oncologist about an admission date, because the eye doctor I saw yesterday is still concerned that I’m not ready for chemo while the eye infection is still not “resolved.”

Can’t I just figure it out from the inside? Find the solution, and heal myself? Can’t I just read Caroline Myss, and Anne Lamott, and this book on healing trauma, and see my depth hypnosis lady, and, as I did this week, contact a therapist who deals in somatic therapy specifically around sexual trauma? Can’t I just be a seeker, not a patient? Stop being the good soldier?

I am not a good soldier anymore. I’m the, “Don’t worry about me guys, just leave me here,” soldier right now. I’ve fought. Hard. For years. I’ve done every goddamned thing that I know how to do, and yet, I’m still scared, and crying, and human, and worried, and tired.

Can’t I just go to improv class? And call back my friend to sing with her band? And use the keyboard that the temple leant me? And say yes when people invite me out? And use this next month to not be in chemo land, but to be in recovering land, so that I can return to work a bit more than a walking corpse? (a melodramatic, but effective, visual)

Can’t I stop now?

Stop these ways of “healing,” these toxic, nuclear, vicious ways that are used because one study said so?

I sat in meditation this morning, all good soldier brain-chatter, and then finally tried to get quiet and listen to what my “insides” had to say about going for the fifth round, and I just started to cry.

I don’t know what to do. (I just got a call from the doctor, and we’re delaying the chemo at least til I see her on Tuesday to look at the eye – so there’s a stay of execution.)

I don’t like thinking, Oh, I need to ask someone to do my laundry so I have enough underwear for the hospital, or think that I have to update the lifeline calendar so I have people to bring me meals so I feel less like I’m eating prison-food in isolation.

I know how to do these rounds; even with the hiccup of the eye infection, I know how to do them. If nothing goes wonky. But it takes so much, guys. It really does. I don’t know how to re-up, or willingly accept this. I don’t know how to agree to this, and I know the impact “energetically” that has on the process. If I’m on board, and think of the chemo as helping me rather than hurting me, if I think of it as medicine that will help me get well, I know that has a better impact than thinking this is poisoning me. I believe the effect is different. But I can’t switch that thought right now. Right now, I’m in digging in my heels mode.

Thankfully, I don’t have to do anything today, except get dressed, eat something, and go with my friend to an art gallery of her friend’s work, then to my depth hypnotherapy, and then have a phone interview with the new potential specialized therapist.

That’s a lot for one day. But it beats peeing into measuring container with an IV line plugged into your chest. 

Reflective, *possibly* Hopeful

Well, I can’t help but debate whether the fifth and final round of chemo, slated to begin next week, is the right thing for me to do, or whether I should forego it and “take my chances.” But just because I debate it, doesn’t mean I won’t do it. The longer this process goes on, however, the more complications become known, like the risk of “secondary cancer” (from the chemo treatment itself), and continued strain on my liver, which my chiro/naturopath says is pretty aggravated these days.

And even though at this point, I feel it’s “not about the cancer,” about my actually having and curing of the cancer, I don’t know that I could live with the “What if’s” if I don’t have the final round. I mean, I don’t have to. It’s just protocol, since the only study they’ve ever done on chemo for Leukemia patients (which, dude, really??) was on 5 total rounds, so they do 5. They never did a study on what happens to folks with 4 rounds, 3, or even six. So, 5 it is. Just “because,” because it’s what they know, what they can see and test, and because a paper says so. God love Western Medicine.

As the (pleasepleasepleaseplease) end comes nearer of this process / ordeal / drama / illness / emergency / tragedy, I question what I now know, what is now different for and in me, that wouldn’t have been different if I hadn’t had cancer. I continue to ask "why," even though I've heard that's “not a spiritual question,” and I continue to pose my own answers. I have some plausible “reasons” or outcomes of my having had to go through this, a period of time that gave me access to ideas and actions that I wouldn’t have necessarily gained without it. Who knows if any of them are “accurate,” but it’s good for me to see that, even though I haven’t figured out the meaning or purpose of my life, I can see that I have gotten some gains out of this process/ordeal/etc.

Was my getting cancer about…:

• asking for and receiving help?
• getting me to address old trauma with new therapy?
• individuating from my dad’s internalized expectations of success and approval?
• was it about getting a car (which I might be)?
• seeing my mom and my brother?
• taking a break from the rat-race?
• letting myself go on a real vacation?
• seeing my chiro more often?
• being leant a better keyboard?
• making different friends?
• learning how to advocate for myself and trust myself?
• taking responsibility for my life?
• learning/realizing how damn much I want to be alive, and how asleep/numb I’ve been in it?
• realizing how sad/depressed/lonely I’ve been and starting to take action to get out of it?
• Is it about sharing my writing? simply about exposing my blog to a wider audience?
• helping others as I process my own process?
• getting clearer on money and how to manage it?
• is it about clearing clutter from my home, or getting a bedframe?
• is it about my now being better able to relate to others in hard situations?
• is it about realizing how much help there is, what a great place I live in, and how much I love California?
• it is about actively using alternative medicine and questioning the reach of Western medicine (which, ahem, I’m pretty sure I was doing)?
• Is it about taking an improv class, and asking to sing with my friends’ bands?
• is it about a new haircut…?

Is it about relinquishing my perceived control of my life and my ideas of how my life should go and be going?

Is it about a devastation and rebuild of my ideas about faith and my connection with whatever “It” there is?

Is my getting cancer about learning to believe fiercely in myself (act in progress) no matter my income or job title?

Or is it simply about starting to sing little snippets of songs again as I putter around my house?

“Why” may not be a spiritual question, and there may not even be a "Why" at all, but, to me, those are some good answers. 

(Singing While Drowning): Cancer. A Poem.

(Singing While Drowning)

It’s past midnight

and you’re lying on your side on

white starchy sheets

in a room off a beeping ER hallway.

An IV line is plugged into

your right arm, and saline

salt water has been dripping

into you for several hours now.

You banter with the blonde nurse

with the long pony-tail, who agrees

she doesn’t know why you’re still

here either, since the prismatic

lights have stopped obscuring your vision.

Some clock-less time later, the cute

doctor with the gold wedding band

rolls his pleather stool toward

your stainless steel cradle.

He tells you something

that slides off your brain like oil, so you

ask for something to write on, which

ends up being a torn cover from the

scratchy off-brand tissues.

You write down the numbers you’ve

asked him to repeat, as though pinning

the words like a moth will

prevent them from shifting into your lungs

to drown you.

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