How am I feeling? Like this. Thank you Sarah for this gift of another’s words that made me feel seen…and by being felt seen, also less alone.

There are clubs each of us was brought into that we didn’t ask to belong to. Without my permission, I’ve become a member of the loss of a sibling club, the loss of a parent club, the survival of sexual assault aka the #metoo club, the fat girl club, the alcoholic club, the infertility club, and now the cancer club. There are many more. You have them too. The choice to frame loss, grief, trauma as being part of a club is very much on purpose. Doing so is the best weapon I have to battle back the siren call of victimhood, of feeling alone in the fear, the terror of these experiences outside my control. At least I am not alone. In this cozy comfort of community, my capacity for loving-kindness, for compassion, can grow. Belonging is love and love is a breeding ground for developing the courage to do hard things. It’s because I love myself unconditionally, that I’m loved unconditionally, that I have the courage to take the risks and experiment with new things on the path to finding my truest self.** Hard choices, easy life. Easy choices, hard life.

Every stranger on the street belongs to clubs of their own, many of them beautiful ones as well. I’ve made my choice to make my life about great love and great love is inextricably linked to great suffering. Think of the wisest person you know and the funniest person you know and they are very likely also the ones who have walked through the most suffering and humiliation. Thanks, awkward childhood permed bangs! Thanks, pooping my pants in 2nd grade! Thanks, faking getting hypnotized in the crowded cafeteria week 2 of my freshman year of college by a D-grade hypnotist because I was too insecure to make it clear I wasn’t actually hypnotized then being “woken up” while under the table he had me crawl under in my “hypnotized” state that sat no less than eight cute boys whose faces reflected by my own humiliation! Why am I sweating from my eyeballs?! Humiliation —> humility —> character - I hope.

My mom and me.
In our prime character-building phase.

The excerpt from Brave Face above says most of what being in the cancer club feels like for me. Even in a crowd of people directing their unconditional love towards me, this experience feels like I’ve been exiled from my life. How I look, how I feel in my body, what I see in the mirror is unrecognizable. My time requires hyper-presence, no planning or scheduling or dreaming for the future. I can’t work, my mind moves in fits and starts - what I’ve learned is commonly referred to as ‘chemo brain’ where I’ll just forget who and where I am at random. No traveling far from the hospital or having sex (I’m too scared I’ll get pregnant) or sugary foods. Food tastes different and some days I can’t taste anything, my tongue swelling up as I treat the sores on my gums. Days have gotten simple and yes, there is lots of beauty, lots I can do, new aspects of myself coming alive in vibrant ways, and my lust and appreciation for life rages within me with a heat I never had before cancer. YET - the remoteness is all-consuming and no one is coming to save me. I have to make the choices that are in my control to keep me alive. I have to give myself permission literally dozens of times every day to welcome anger and fear and physical pain with the same love I’d welcome joy and optimism and humor. I have to deliver the good and terrifying news to the people I love over and over and over again. I have to surrender. I have to survive.

I have to survive.

I HAVE to survive.

I’m one of the lucky ones. So many face unimaginable isolation. I see it in the doctor’s offices, usually, the elderly patients waiting for too long in a waiting room, all alone until the city medical vans come to collect them to take them home where they will likely suffer alone. It’s not fair. None of this is. That’s not the deal for any of us. We don’t ask to be in these clubs but we must remember that we’re not alone in them. Look at the power of the past few years, the accountability and policy changes inspired by the #metoo movement that is yielding some accountability for sexual assault and harassment victims. An awakening of activism, of understanding, of hope for equity and reparations from the murder of George Floyd and so many other senseless, unjust deaths of people of color. From LGBTQI+ to body justice to indigenous peoples issues and more. When we elevate, when we share our greatest personal tragedies and suffering they can become the birth of connection, can affect change, can welcome those out of isolation and into belonging, into love.

I really don’t want to be here, but here I am and I intend to talk about the truth of it, to make something of this time even just for myself. And, damn, I cannot wait until I can make the next haircut choice that I’ll be embarrassed about in ten years. #PermComeback2022

Arbitrary footnotes: Another pinky swear. Repeat after me: I promise, no matter what goes on in my head, to never verbalize the judgemental, bullying, teasing thoughts in my mind when I see someone who looks a little different than what I’m used to. I do this because everyone should be able to try different selves on as they wish and when they find that self, express it without hearing my bullshit opinions. I will celebrate difference or, if I can’t manage that, I will reflect back on my own fashion choices as a teenager and kindly shut the fuck up.

On isolation.

The results.

The first PET scan.