“Ground Control to Major Tom

Ground Control to Major Tom

Take your protein pills and put your helmet on

Ground Control to Major Tom

Commencing countdown, engines on

Check ignition and may God’s love be with you

This is Ground Control to Major Tom

You’ve really made the grade

And the papers want to know whose shirts you wear

Now it’s time to leave the capsule if you dare”

“This is Major Tom to Ground Control

I’m stepping through the door

And I’m floating in a most peculiar way

And the stars look very different today

For here

Am I sitting in a tin can

Far above the world

Planet Earth is blue

And there’s nothing I can do

Though I’m past one hundred thousand miles

I’m feeling very still

And I think my spaceship knows which way to go

Tell my wife I love her very much she knows”

– David Bowie, Space Oddity

A Jealous Man

“I want this thing outa me.” I say to Alyssa. “Ok. So you want to go with Dr. McKnifeskillzz?” “Yes, and I wanna do it now. My vision is getting worse. This thing is growing.” “Ok. Do you want me to call and set it up?” “Yes. We have to hurry. It’s almost Christmas. Dr. McKnifeskillz said that whole place basically shuts down over Christmas. If I don’t get this done, I’ll have to wait until after New Years. It’s gonna keep growing and growing, and growing.” I was starting to feel intense time pressure. Crushing. “Ok. I will call today”

Alyssa did call that day. They were waiting for her call-set it up for the very next week., less than week in fact. They cleared other stuff. It was pretty evident that Dr. McKnifeskillz and his team saw this as urgent, maybe even more urgent than I did, which only served to increase my dread.

The term “dreadful” has been used so much that I believe it has lost its power as a word, become watered down through careless overuse. The week leading up to my brain surgery was dreadful: def- Causing or involving great suffering, fear, or unhappiness; extremely bad or serious (Oxford Living Dictionary). During that lead-up week, all I could think of is everything that could go wrong. Although Dr. McKnifeskillz seemed confident about his ability to push through a considerable amount of my brain-matter and get at this tumor, I was not so sure. I kept considering the other neurosurgeons and their hesitance to perform even the parascopal (needle-poke) surgery, let alone open brain surgery.

“It’s kind of… in a tricky place…” I recalled Neurosurge 2 wincing. The motherfucker actually winced as he said it.

But more powerful than my worry was the feeling that I had to have this thing out of me, yesterday. It was for me, a decision based on something beyond logic and rationale thought, catalyzed by an increasingly unbearable knowledge that something was in there, inside my head, growing.

Still, I worried about what a surgery mishap would mean for Alyssa. I had this awful picture of her sitting beside me, a drooling shell of a person in a wheelchair. Someone who had to be fed, and bathed, and changed. I saw her future, and a loyalty that destroys her life. I ruminated on this and decided that I could not let it happen.

“Look, I’m optimistic about this surgery, that it will go ok. But if it doesn’t, if something happens…” I began to cry, “I don’t want you spending all the rest of your life with me, if I’m not really me.” “You have to be positive. That…” She tried to interrupt me. “I have to tell you this.” I interrupted her back. “I think I’m gonna be alright, but this shit isn’t exactly safe, and if I’m just some zombie, don’t be coming around wasting all your time with me. I don’t want you there. I want you to be happy. You are young.” Blubbering now. Who have I become? Who fuck is this guy? Fuck.

She was walking towards me, blubbering too. What a fucking scene.

“But promise me you won’t ever let someone be mean to you again.” I said. “Never again.”

She nodded, holding my face in her hands. She knew what I meant.

Now, I know what you’re thinking Dear Reader,- What an incredibly brave heroic, selfless thing to say. Yes, that’s right, I found something deep inside me, something incredibly heroic… (Thanks Starlord).

Over the next few days I started think about what I had said. What the fuck is wrong with me?! What am I saying!? I don’t want her moving on with some bro in Topsiders, while I drool out the rest of my days in shady acres! But what was I gonna do? You can’t exactly take some shit like that back. For the next few days, the thought of her with some asshole named Bevan Cutterstankbuttstevenson just ate at me. It pissed me off so much that I actually thought about walking down to the Marina to whip someone’s ass. While I still could.

“Just gonna have to be alright.” Just gonna have to wake up.”

Do I really think being a jealous bastard helped me survive brain surgery?

yes.

The Purple Space Suit

It’s my big day. I’m at the hospital with Alyssa, my Dad, her Dad, and my brother, Jeff. It is time to get ready. They whole famdamnly can all come back with me for a moment while I change and get set up, then off I will go, and back they will go to the waiting room with the other families, to sit and wait and worry and hope. So, back we go, my family and I. We enter a large room with multiple beds, a nurse behind a desk asks me to recite my full name and date of birth.

“That’s you.” She hands me a purple pair of pants and a purple shirt. Putting them on, I’m pleasantly surprised. I had figured they’d put me in one of the assless hospital gowns.

Its on now, my purple brain surgery uniform. Looking down at myself, the purple shirt seems kinda puffy. I push on it with both hands like Santa holding his belly.

“Check this out,” I say climbing into my bed, “it’s like some kind of purple space suit.”

Alyssa climbs into the bed with me, lays on me and I hold her. We just lay there for a moment. Her dad takes a photo.

A new nurse approaches, asks me to recite my full name and date of birth. I get it right.

“That’s you,” she looks at a wristband on my right arm, gives me some instructions I can’t recall, says the anesthesiologist will be by shortly to talk with me and ask me some questions.

The anesthesiologist arrives, explains what she will be doing during the surgery, asks me questions about whether I am or ever have been a regular smoker, if if’ve ever had surgery before, if I’m allergic to anesthesia, if she can move my arms into certain positions during the procedure, things like that.

“I’ve smoked cigarettes here and there, mostly as a stupid kid, but never regularly, like a pack a day kinda thing.” I say. “Had three surgeries on my shoulders- 18 years ago, both dislocated, left one’s still a little loose. Not allergic to anesthesia, at least no problems when they knocked me out those previous times. Oh yea, had my wisdom teeth out, no problems with anesthesia there either.”

Then they mention something about a catheter.

“Wait, so like sticking something up my pee-hole?” I say squirmy. “That’s totally necessary I suppose?” “You’ll be under. Won’t feel a thing.” Says a nurse, or someone. “Its no problem, Ive had catheters many times.” Alyssa’s dad, Blake reassures me. “I just gotta do it, and that’s all there is to it.” Acquiescing in my poofy purple space suit.

It’s time. I hug my brother, then my dad and its hard because I hate to see them so worried, hate that they are going through this. I feel like I’m doing this to them. My Dad tells me he loves me and it hurts so much. Hurts now as I write it. Alyssa’s dad hugs me gruffly, tells me I’ll do fine. I’m glad he’s there. Then it’s time to say goodbye to Alyssa and it is almost more than I can take. I fight like hell not to cry. I am scared but I don’t want to show it. Not because I’m embarrassed, or think I should’t be, but because I don’t want to focus on that right then. I just want to focus on her. I don’t remember what I said or what she said, I’m sure it was “I love you.” and “this will be ok.” I just can’t remember. All I know is it was fucking hard. Its hard to write about it now too. I want to run from it. I’ve been thinking a lot about that lately, how much I don’t want to deal with this, how much I want to run from this. But there is of course, no where to run. This is with me everywhere I go, every fucking second of the day. Running is not an option, and I am going to have to find a another way to deal.

Back to the pre-op prep: Sitting up in my bed, I’m all I-V-ed with drip bags of mysterious medication above and behind me. They Lay me flat, begin wheeling me off to theOperating Room. I say goodbye again as I leave the room with my entourage. Helpless.

“A little bump” says the nurse driving the bed, his face coming into view above me. We go over some small bump on the floor. “And now something to lighten the ride.” He grins.

I do begin to feel lighter, physically and emotionally, “I’m glad you all give me something for this part.” I say and start cracking jokes, the medication kicking in. My poofy purple space suit seems more and more the appropriate garb.

Warm.

Awake

Alyssa is there. My father is there, and my brother, and Alyssa’s father. My childhood friend JR is there. There are others too, I just cannot remember everyone, brain surgery you know.

I’m elated to be alive and tell everyone how grateful I am for them. I’m so happy. I’m so happy in fact that I cannot stop talking. I’m serious- I actually, literally cannot refrain from speaking. No inner monologue whatsoever. It turns out to be a side effect from my procedure. It will be this way for the next for few weeks due to the powerful “brain” steroids they have given me to reduce the swelling in my brain. So, for the next few weeks, every thought and I mean every thought that comes to my mind- I say it. I was batshit crazy for that time. They tell me when I first woke up, I grabbed both of my eighty-three-year-old father’s hands and squeezed as hard as I could to demonstrate to everyone, and myself, that I did not have any deficits in strength on one side of my body. (This had been a potential risk if surgery didn’t go well, if one of many critical brain areas were inadvertently damaged.)

Dr. McKnifeskillz comes to see me as well as several members of his team. I distinctly remember shaking the hand of his nurse practitioner, thanking her heartily, telling her I know it “takes a team” to do this, and that I was grateful they had been my team. I’m told the tumor was distinct and rubbery, that he was able to “get it.” The initial pathology report also indicates the tumor is benign. I’m told the initial pathology is accurate 70-80-percent of the time. I figure those are pretty good odds so I go with it.

“A benign Anto-pleomorphic-something or rather!?” Alyssa says close to my face, happy, “Less than 2% of all brain tumors! Why do you have to be damn special!”

I am happy, not just relieved, but happy. I’m talking to everyone with a machine gun for amouth. Friends and family are there, all around me I can’t even recall them all. What I do recall is telling them all how fortunate and cared about I feel. I also don’t recall thinking too much about that pending official pathology report that is still out there. And it was still out there.

“I’m so glad that I’ve managed to not be such a huge asshole that nobody gives a shit about me. I’m so grateful that you all give a shit about me!”

I remember trying to explain how in some of my psychotherapy sessions with formerly incarcerated violent offenders, I had seen men who had nobody. So many of the guys I had worked with while they were still on parole, transitioning back to society from prison, had quite literally no one. They had been so angry, so selfish, so mean, and so violent to others, including family, that they were now totally alone. These guys had been mandated to see me as a condition of their parole. Some of them were even mean to me; seeing me as an extension of an unjust system that was seeking to control them still. I could appreciate this view, and did my best to help them. With some, I developed a positive relationship, others not so much. But regardless of how well I managed to get on (or not get on) with these guys, the one thing that always struck me, was how alone they were. Many had committed horrific sexual offenses and because of their actions, as a group they were hated by society. Even worse, as individuals they were invisible. My point is not to draw out sympathy for these guys, but more to acknowledge how the loneliness and sadness of their situation that was never lost on me, seemed somehow now even more poignant when juxtaposed with my own situation. And laying there in the ICU, this is what comes to my mind, and the recognition makes me all the more grateful for Alyssa, for my family, and for my friends who are not indifferent, who do care what happens to me. At times, I to get overwhelmed by everyone who has come to be with me, not so much by their actual presence but more by the idea of it all.What it all means. I know part of it is the steroids, which make it a little harder to control my emotions. But the steroids don’t create these emotions. I know this because I still feel them today, weeks after I’ve stopped taking the steroids. More often than not, when I feel overcome now, it is not by the shock and the fear of my situation (though that is certainly a constant), instead it is the idea of how many people have stepped up in real ways to help me in whatever way they could. It is a good feeling, Reader, but it also brings me to tears, touches me in a way that it is almost more than I can take.

Other people’s lives

The steroids keep me up and talking, and at 4am, I’m still at it. Alyssa won’t leave my side so she’s still up too. Thankfully, a night shift nurse takes pity on her and brings me for a walk around the halls of the ICU. I talk continuously to the Nurse as we walk and Alyssa gets some rest, finally. The nurse continues to come around periodically and walk me- I am more like a dog, than a man for this period. On one of these walks, the nurse tells me about another patient, a young woman in the ICU. She also has a brain tumor. She’s scheduled to have her own craniotomy with Dr. McKnifeskillz in the next day or two. She is scared. Would I mind talking with her, just showing her that I had this surgery and I’m up and about, doing ok? I feel like I’m all jacked up on Mountain Dew and Cinnamon Toast Crunch and the idea of talking to anyone sounds great, so I agree immediately. The nurse walks me to the other patient’s room. The moment I walk into “Cindy’s” room, I go silent. Cindy is sitting up in bed, her parents and brother in chairs surround her. She looks at me with quietly fearful eyes, and I know her instantly. What’s vibrating inside her penetrates me instantly, and its as if two tuning forks have been brought together, the one brining the other into sink. My talkative grandiosity evaporates; the steroids are no match for this. It is incredible the way we can know one another. Instantly, I know what’s in Cindy’s head and heart. I know of course, that there is literally something in her head that is not supposed to be there, and I know she’s scared because the nurse told me. But more, I recognize in her the yawning sense of dread, the uncertainty and the doubt. Looking at her family, then back at Cindy, I know the comfort of having family there, and how it mingles with the painful awareness that they are also scared and in pain because you are. It is a maddening cocktail, to need them, to be glad they are near, and to simultaneously feel the agony of watching those you love, in pain, worrying about you. It is nearly impossible to get your mind around it, and even harder to articulate because when you try, those who care about you, hush you, and try to take your pain from you. They tell you they love you, that there is nowhere else in the world they would be, and you know its true, and it hurts all the more because it is true. So there you all are, wanting and trying in vain, to take each others pain. And it is so hard to watch someone you love in such pain in the presence of your own. You feel responsible, no matter how absurd that may be, and you hate your own pain that much more. I feel all of of this, as Cindy looks at me, feel the comfort of solidarity in shared experience. I know it is happening for her. I can fucking see it. With more than just my eyes.

“I’m John.” I say simply. “Hi John.” Cindy manages, her eyes about to overflow. “John is the patient I was telling you about,” The nurse says, “ He just had his craniotomy less than 24 hours ago.” “Wow,” Cindy says, “you look great.” “I feel good. I say. Well, pretty good, considering, you know,” waving to the right side of my head. “Who’s doing your surgery?” “Dr. McKnifeskillz, tomorrow” A single tear leaving her eye, pausing briefly at the top of her cheekbone, then racing down her face disappearing beneath her chin. “That’s who did mine!” He’s great. I am so glad I chose him. My wife and I talked to 5 or 6 different neurosurgeons and chose him. You’ll be fine.” “That’s reassuring to hear.” What kind of tumor did you have?” “I actually can’t recall what its called, it was on the right side, here; it was pushing on my optic tract. That’s how I first noticed something was wrong; had some vision stuff.” I tell Cindy some of my story, then ask, “What about you?” “Mine’s in the center of my brain. Its big.” “How’d you find out about it, what brought you in?” “I get these terrible headaches. For a while now. Everyone, the doctors, kept telling me they were just connected with my menstrual cycle. Today, I told them I wasn’t leaving until I had an MRI.” Another tear follows the same track as the other, pausing at the ledge of her cheekbone, then racing down to disappear under her chin as the one before. “And they found a tumor.” I say it for her. “Yes. It’s big. My brain’s shifted to one side its so big.” Another tear, same as the others, her emotion measured, contained. “I’m on steroids to reduce the swelling and shifting its causing.” “This shit is terrifying. There’s no way its not. I was terrified before my surgery.” I sit there and talk with Cindy, attempt to reassure her parents using myself as an example.

It feels good to be there, to be afraid with her, to care, and to offer comfort without a confusing sense of responsibility. I know I can’t take her pain and I don’t even try. I don’t want to stay too long, so after 10 minutes, I again tell her she will be fine, that it is a shitty thing to have to deal with, but again that she will be fine. Cindy thanks me, says it has been helpful. I tell her it has been helpful for me to talk with her. I went to visit Cindy one more time before her surgery and before I was discharged. Alyssa came with me (she had probably come with me the first time too). On this second visit, I bring Cindy a gingerbread cookie in the shape of a middle finger. A friend had made a bunch for me, sort of a “fuck you brain tumor” cookie. Cindy laughed at this. I again told her she was going to be be fine and wished her family well. I knew then that I had gotten as much out of talking with her as she did from me, recognized that talking with her made me feel useful, provided a sense of meaning and purpose. What I didn’t realize at the time was that In a way, reassuring her, reassured me, and I was able to experience my own fear without worrying about how my pain effected her. Her pain was her own and mine was my own. It was a relief not to be THE ONE worrying everyone else. It took the burden off of me. and afterwards, somehow, when I looked at Alyssa, it felt a tiny bit less painful.

The smallness of things

They discharged me from the hospital on Christmas Eve, just three days after Dr. McKnifeskillz sawed through my skull, squished into my brain, and pulled out a rogue agent. The first weeks following brain surgery are some of the strangest of my life. They’re also a bit of a blur. But there is one thing I definitely remember, how small everything felt. I recall trying to explain my perspective to Alyssa and my father.

“It all just seems so small.” I said on our way home, looking out the window of our car at the other drivers.”

I still struggle to explain how it felt. It was like I was a frightened bewildered, space alien. All the people I saw leading lives I didn’t understand and knew nothing about, driving to who knows where, maybe just the grocery store, or maybe to another human’s house, maybe to work. All of them doing there own little thing, whatever it was that they had decided was important enough for them to do that day, at that moment. There seemed a meaninglessness to it, an insignificance. I’m not saying that I think these other people’s lives and activities don’t matter and that mine somehow did. But I didn’t know what they were doing or why, and they didn’t know what I was doing or why, so in a way our lives were insignificant and meaningless to each other. This was more a feeling than a thought at the time, and created an oceanic sense of dread in me. When we arrived at our apartment, Alyssa, my Dad, and I, this strange perspective continued and the accompanying dread only grew. Ironic how as things grew smaller, my dread grew larger.

“Everything seems so small.” I said again, Looking out the window of our apartment at the other houses and apartments. “The streets just don’t look or feel the same to me. Think of all those people in their homes, living out their own lives. they have no idea I just had brain surgery, and I have no idea what is going on in their lives…”

There was something about the independence of all our lives that haunted me. I felt so separate from them, from everything, and I just couldn’t get my head around it. Alyssa and my dad just nodded in agreement, probably thought it was all the pain meds and steroids talking. But five weeks later, this sense of the smallness of things still haunts me. As I sit here now, I don’t like writing about this, don’t want to. But I have to, I’v resolved not to run from any of this shit, mostly because I know I really can’t. Still this right now, it fills me with dread, makes me feel tired and weak. It is that old dreaded idea of indifference.

Several days after I arrive home from the hospital, sometime between Christmas and New Years, I get a voicemail from Dr. McKnifeskillzz. He needs to talk to me about the pathology report.