Today marks one week of living in my temporary hospital home. It honestly feels like I just got here because I’ve been so damn busy. Would it surprise you to know that I haven’t watched a single minute of visual media (other than the morning news while I drink my coffee and eat my 8 pieces of bacon— shut up, my oncologist told me to eat whatever the hell I want: DOCTOR’S ORDERS) or read a single sentence of leisure reading? I’ve been sitting in this 200 square foot room for an entire week with no “work” to do and haven’t been bored once. I’m as astounded as you are considering that I can’t sit around my apartment between 5-10pm with out going a bit stir crazy every weekday. I suppose the blog and the hourly circulatory system rapings help pass the time… but still.
I guess I should be counting my blessings that this isn’t some sort of brain cancer that robs me of my ability to focus, if such a thing even exists. One full week of total mental stimulation and productivity, one full week of new and exciting (for better or worse) experiences, one full week of thoughts and emotions that I ignorantly never expected to have.
Today was actually the first day that I felt less than stellar physically. I was warned that this would happen and I’m prepared for it. At the risk of sounding pretentious or full of myself, the brave face that I’ve put on is absolutely genuine and is not a happy clown mask hiding a sad clown face… but I would be lying if I weren’t without my moments of fear, doubt and vulnerability this week. This blog has been light and positive, funny and uplifting, but it has always had the intention of being a an unfractured reflection of my true experience with this life changing kick in the dick.
Since it’s my one week anniversary, and since today marks the beginning of what I assume to be the downturn in my physical condition, I’m going to share with you what went through my mind when I woke up in a depressed terror at 4:30 am the night after my diagnosis. I emoted earlier that day and it was then that I made the agreement with myself to approach this with all of the positivity and strength that exists within myself, but there was still some vulnerability and fear that needed to be released before I could truly move on to my ideal form.
I was already in tears when I woke up, alone, scared, and all I could think to do to comfort myself was to grab my laptop and write. This was before I considered the blog, I just had an instinct that that I should document my thoughts, at the very least, for temporary catharsis. I opened up a google doc, the most romantic and personal of all journalistic tools, and typed and sobbed and trembled and freely vomited my brain through my fingertips.
It’s rambling, ineloquent (as if my writing is ever anything but), not particularly poignant, and sometimes downright shallow but I feel that it is important for me to be as transparent as possible when sharing with you my emotional state. I’m going to only edit what I wrote so that it makes sense to a reader who isn’t having an existential meltdown. Everything in italics will be a direct copy and paste from the gravity free zone of my blackholed soul, the bolds are after the fact commentary. You may recognize bits and pieces from other articles:
This is the 2nd time I’ve actually cried, the first being after I saw the look in Liana’s face after I told her. I woke up 4:30 crying. I’m thinking about work, my finances, being hirable in the future, getting enough medical leave to cover my bills and debts, using all my actual time off and never being able to go on a vacation with Liana, never being able to have enough to give liana what she deserves for choosing to stay with me. Am I worth it? Am I personally worth staying with? How do I even measure my self worth…numbers? life points (<not sure what I was going for there, maybe some sort of karmic amalgamation of good deeds or something?) friends? accomplishments? My mortality is being challenged and I don’t know what I have to show for it, am I even worthy of this life that is currently being tested? How do I know? If I’m questioning this then surely everybody else is as well. I get cancer, I die, what did it matter? what was it WORTH? (yes, this is all basic bad trip existential thought that anybody with a semi-rational brain has had before, I realize, but that’s not the point of sharing this. I’m documenting a downward spiral of unchecked emotion).
I need to figure out what I’m worth… in all of the ways. How much am I valued at my company, how much do my friends and family value my existence in their lives, how much impact have I made on the world in less obvious ways. I’ve never felt the need to know before but now that death is conscious I’m too afraid not to find out these questions. I know it’s just my ego gasping for air and screaming for validation, but I need to know. I don’t even know WHY I need to know. I just do.
If I survive, am I going to be valuable enough to have a family? Is that even responsible? What if I spend the rest of my life in and out of hospitals with growing medical bills and shrinking physicality. Would it be worth it to bring children into that world? Would be worth subjecting a woman to that? Is it worth subjecting myself to it…(getting close to to the existential bottom here…digging deeper down to the well of pure arsenic…but then one word popped into my head:)
she sees something in me for which to stay. she knows what’s going to happen to me, how far low I could go. how ugly, unattractive sickly, wretched, destitute, pathetic I might get. I gave her an out, I couldn’t in good conscience tell her not to leave if she wanted to. I was terrified of suggesting it, not because I thought she would take the out, but because I realized how reasonable it would be if she left. There are so many things I might not be able to give her, so many things I may never be able to be. If she wants those things then she has the right to leave. Part of it was selfish. I know I can handle a worthless life on my own easier than if I had to go through it feeling guilty for ruining somebody else’s life, somebody that I truly love. I’d rather suffer alone than watch her suffer because of me.
She could go, but she stays. not out of pity, not out of the social stigma of leaving somebody when they are down… but because she somehow sees something in me right now that is worth all of what’s to come. Regardless of what happens, beyond all other forms of strength, I know this is now the source of my power and it is the handle that I will use to pull myself back up and hold on. (starting to turn this pity around a bit. A small gesture of faith and confidence in a loved one is sometimes all it takes to stop somebody in their tracks and to allow them recover from an emotional tailspin. This is why we are social creatures, our confidence and dignity is contagious and helpful to each other as individuals and as a species.)
I took a few minute breather after this. My perceptions were changing at that moment, I could physically feel them. I was still crying but my tears were changing. My breathing deepened, my heart calmed and I began to focus and evaluate just what had been happening in my head for the last few minutes. My outlook was changing:
l lie awake and cry at now not because i’m afraid, or angry, or scared or upset, or in pain anymore. i’m emoting because i know that if anybody should have to go through something like this, it’s me. i’m not saying i deserve cancer, i’m saying i’m far more well equipped to handle it than others and for that i am thankful and proud to be of service. I didn’t sign up for this, but at this point i have accepted it as if i had. I cry not because i’m alone, but because i’m lucky enough to have limitless love and support around me. i cry not because i’m afraid, but because i’m lucky enough to have the resources at my disposal to put myself up in one of the best blood cancer treatment centers in the world. i cry not because of any “why me” mentality, but because i know that anybody else with cancer who doesn’t have of my means and my network of support and the loves that i have is suffering far more than i am. I have these amazing comforts, both physically and emotionally. christ, i have a button that calls in brilliant and attractive young men and woman to my room who will give me whatever i want, or answer any question i’ll have. They’ll help me stand up or clean myself up when i can’t, i have a bed that raises up and down at the push of a button, a room all to myself with a window (view could better..), there’s a modern impressionist painting on my wall (its a print, shut up), and i have fucking room service food one phone call away.
not to mention access to some of the best, smartest, successful doctors in western medicine and the kindest, most patient, most qualified staff ever.
i have a network of friends who dropped what they were doing when they found out my news and called me, texted me, messaged me. people i hadn’t spoke to in years to people i’ve neglected to people who i see every weekend. they all offered whatever they could to me just because I have random a genetic mutation.
i know most people don’t have what i have. most people would have a very different experience with leukemia than i will have. i’m so well equipped for this and I now realize it and the only thing that could make me happier would be the knowledge that my weird genetic cancer mutation would somehow make it so one less person has to handle the same fate.
So I went through a bit of an existentially emotional journey that touched on my life, my work, my worth to liana, my overall value as a man both strong and broken. I cried, I swore, I almost gave up, but I received enough help to get me to accept whatever reality was standing in front of me. Then I laughed…Not the insane laughter of a lunatic in denial, but the epiphanic awakened laughter of a man who spent 29 years trapped in a state of cynicism only to finally understand what it takes to break free of those chains of defensive self doubt. I was cynical during the good parts of my life and now I have no choice but to be positive during the worst parts. I went from zero to acceptance in a very short amount of time and had then had no choice to move on to the next step of grief, which is what I call “BRING IT THE FUCK ON.”
Sorry for the downer. I just wanted to show that this hasn’t all come easy. There is a major catharsis in letting yourself be vulnerable… and definitely a reward if you let yourself walk long enough in the desert. I wouldn’t be here where I am not without that night and for that I am thankful.
Liana wrote a similarly themed piece last night. It seems that were both riding the same parallel wave of emotional vulnerability nast night (1/29/15) and wrote parallel pieces completely independent of what the other was doing. She never stops impressing me. We play the same tunes but in such different styles. They are the same songs, but her’s sound so much better to my ears: Liana’s article On Grief