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I have a thing in my head

Hello, Beautiful People.

Erin here. I have some news. It’s not good news, but it could be worse news. Like, it could be the news that Donald Trump was elected president of the united states of America. That is really really bad news, so it makes my news kind of even happy in comparison. My news is that I have a brain tumor.

A fucking brain tumor! Holy crap. How does one even begin to think about something like that?

Here’s the story: Last week, Thursday November 3rd, I had a seizure. I was just lying around home, feeling a bit sorry for myself because I had a cold, and then one of my legs started moving. I kind of thought that maybe I was going to have a cramp, because I get cramps sometimes. But then the other leg started moving, and then I tried to reach down to stop them, and I couldn’t control my arms and hands either, and then my whole body was going all spastic – it was very weird and frightening. I shouted a couple of times, really loud, “AAAAAAHHH!” but it was the middle of the day and none of my neighbours heard me, and then it felt like there was a disk over top of my windpipe, and I couldn’t inhale or exhale. Then I passed out.

When I woke up, I thought it was a dream at first. I felt something on my tongue, like a pebble almost. But I couldn’t get it out of my mouth, so I looked at my tongue in the mirror, and it was deeply cut and very bruised on the right side. The pebbly bit was the beginning of a kind of scab. I realized then that what I remembered as a dream had really happened.

I called my friend Francesca. We had talked about getting together for coffee that morning because she was in town for a few days, from some far-off island where she lives now. But she got too busy, and I had a seizure…anyway, she said she thought I should go into emergency. So I did. I drove to the nearest hospital, a little Catholic hospital in a residential neighbourhood.

I didn’t know what to think. The doctor who saw me wore a checked short-sleeve shirt, with a stethoscope round his neck, tucked into one of the front pockets, and he looked like a doctor from a Norman Rockwell painting. He was kind and measured. He got me in to a CT scan. Twice. Once with dye, once without. He looked at my brain, and my torso as well.

“There’s a swelling on the left side of your brain” he said, “It might be an infection, a stroke, or a tumor”. He thought it might be a tumor. He said he would get me set up with an MRI. A CT scan is a computerized tomography. It’s a bunch of x-rays all taken together to make a kind of 3-D picture. A Magnetic Resonance Image is that – magnets and noise acting together to make a more detailed 3-D picture. The MRI was Monday the 7th.

I was in the hospital, still, because that would expedite the process to get me the MRI. You know what, I barely had a moment alone. At the end of August, I started seeing a new woman. We met earlier this year through a mutual friend, and shared a bit of spark right away. She’d already read my dissertation, before we met. Part of it anyway. So that made her pretty interesting to me. I’m a bit self-involved that way. When I got back from my epic trip to the Ancestral Homeland, I invited her to dinner. My travels, and the women I’d met along the way, the adventures I had all served to nudge me out of my grief and sorrow. I gained some confidence again, had a sparky connection with UK feminists who inspired me and woke me up. Old Erin returned to Vancouver. But even better than I was before.

Anyway, I invited her to dinner, we learned a bit more about each other. So far, we find each other interesting, smart, politically astute, engaging, kinda sexy too (but I’m not gonna talk about that stuff, no way!), and really funny. We spend most of our time together laughing.

Before I left for the hospital, I sent her a message to please call me when she got home from work. But I got impatient and decided to call her before she called me. Or text, I don’t remember if I texted or called. Anyway, she came whistling over to the hospital from where she was. She was with me when the doctor said, “it looks like a tumor, but it might be something else”. He told it to me straight. He said he didn’t know any more than that, but they would keep me until they could give me a few more answers. I started to cry, I couldn’t not. But not great snotty wracking sobs, just quiet frightened tears creeping down my cheeks.

I don’t remember now who came that first night. Susan’s daughter Iris came one day, she brought a whole bunch of treats. She’s been off sugar for some months, so is living vicariously through other’s consumption – gummy bear things, fancy beautiful chocolates, energy bars, san Pellegrino sparkling flavoured water, some other fun things to eat. My friend Kim came nearly every day, and my women’s step group came, too, once a few came and we had a meeting in a room on my ward. We talked about living sober, and being grateful and holding each other up.

When the nurse came to make sure my IV stent was in okay so they could put dye into my veins for the MRI, she looked at my arm and said, “It looks swollen, is it painful?” and we by and by figured out she was talking about my very impressive bicep. I laughed and flexed the other arm, “Which way to the gun show? That way!” We all laughed at that…

I haven’t been alone for hardly a minute since I got myself to the hospital last week. I know there are people I haven’t told. My radical feminist friends and allies met on Tuesday, I went too, because I wanted to be with them. Including my ex-lover, who’s mad at me – hell we’ve all been mad at each other for a good part of the last few months – but we always know we need each other, and we are essential to each other’s lives. She said to me, “I love you so much, Erin, you know that, right” it wasn’t a question. I do know that. And she knows I love her, too, no matter what, and forever.

One of the women I admire most, and who I know I’ve disappointed – but for whom I would do nearly anything (she knows that too), said at that meeting, she said, “you have a reputation for kindness, you show up for people. Now we can show up for you. We have a history, you’re one of us.”

My first lover, from the mid 1980s, when we were young and new and full of possibility – she lives here now, and she has brain cancer too – but worse than mine. She knows more than anyone else what this is like. She called me and said “I love you very much, Erin”. I told her we’re in a special club – I think only really really smart people get a brain tumor. She’s really smart, and she was instrumental in both my coming out as a lesbian and my embrace of feminism.

Everyone has showed up for me. It’s humbling and inspiring. My new lover came right from work the minute I sent word I was in the hospital. My oldest friends, my sober friends, my work mates, my feminist friends, everyone has stepped up. My doctor came, too – and she gave me a hug. Our first hug in the 26 years she’s been my doctor…The guys at the gym, my Terminal City Barbell Club – I went over for a workout yesterday, first day out of the hospital, and two out of the three of these guys, hands full of chalk and calluses, hugged me full and hard. The other one, a young man, said, “Erin, I don’t know what to say to someone who has something like what you have, …”

“Me neither, KC, I get it”

“…but I hope it’ll work out okay, and we’re beside you”.

I know.

My brother cried on the phone with me, “I love you so much, sis” and I could see him standing in his kitchen, holding the phone and wiping his tears. “Do you want me to come?”

Oh yes, I do. But I don’t need him here, and he would just be lost and neither of us would know what to do. There isn’t anything to do, really, just wait. Maybe do a little research about neuro-plasticity – how we could maybe re-shape the tumor into something useful, brain cells that I can use to climb walls and race trains – I told him not to worry. I’ll let him know what to do, as I know more. I told him I love him too. He is a lovely, lovely man. I’d think that even if he weren’t my brother.

The tumor is cancerous, looks like, but it might be the kind that just sits there, glowering, but doesn’t move or grow at all. They’ll find out more when they do the biopsy, November 21st. If it’s terminal, I can think of a few magnificent incendiary actions I could take that will help all of us in the wake of that nightmarish election to the south. But I don’t think I’m going to die any time sooner than the usual four-score-and-ten.

I asked the neurosurgeon if it was caused by accordion-playing. He didn’t think so, but no one can be sure. it’s not from cell phone use either, and there’s no indication it could be MS or a stroke or infection. Nope. It’s a wee tumor, that’s all. I can get away with all manner of bad behaviour now! Naked accordion playing, swearing in church, whatever I want. I would’ve thought i’d want to drink good whisky and smoke smooth cigars. But I don’t. Not even a little bit. I AM drinking coffee late into the afternoon though. Rebel me.

I’m gonna wrap up now, I’ll keep you posted. As cancers go, this is pretty good, really. It’s kind of romantic and exotic, for one thing – not icky like colon cancer – and brain tumors don’t hurt. That’s a relief. I am grateful, more than anything, even more than afraid, I am grateful.

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About easilyriled

My mom was Edith, my dad was John. I have a brother, who is Shawn. I have many friends and allies and mentors in my life. I'm white, over-educated, under-employed, messy, funny, smart, lesbian, feminist "Not the fun kind", as Andrea Dworkin said. But I, like the feminists I hang with, ARE fun. I play accordion better than I did, and i'm learning the concertina. Slowly.

26 responses »

  1. Erin dear Erin, I love you too, very much, and am definitely with you.
    Sending you good energies, and I doubt for a minute that the accordion had anything to do with it!
    Building up to the epic weekend, you’ll be in our hearts. Likely I won’t tell everyone, just a couple if you don’t mind. Because of all the groups you mentioned, well, don’t forget the storytellers. We love you too.
    Kira

    Reply
    • Oh, Kira! Yes the storytellers, who weave the worlds together with words–I will be thinking of you this weekend, I have to get another mrI. Have fun, keep the faith, feel the love–we will talk soon. xo

      Reply
  2. A brain tumour from an accordian. HOW CAN YOU BE FUNNY NOW! Yes I’ve always thought that about accordian music. Well damn. Damn. You are so calm, rational, focused. And funny?

    Erin. We need you. (Don’t think you are going to get out of any rf grunt work because of this.) You are one of the real ones.

    Come home and I’ll buy you doughnuts you know where. xxx

    Reply
  3. Erin, how can you write so beautifully and with such humor? You are one of a kind and I have so much love for you. Feeling admiration, concern, hope, and – as you said – much gratitude. We will be in Vancouver this upcoming summer and will see you then. In the meantime, if you do want to mobilize for your sad neighbors to the south, lemme know. Xoxo 💙💙💙

    Reply
  4. My dear cousin, I love reading your blog but this one has sent me for a loop. I’m at a loss for words. You know that we are here for you in any way you may need. You are not alone. Please keep us informed in the days ahead. And keep playing that damn accordion! Love ya, cuz. Linda

    Reply
    • I know, dear Linda, I know I have so many people in my corner, it’s not even a corner, it’s a bleedin colleseum. I’ll for sure keep you posted. Much love to you, cousin xoxo

      Reply
  5. Rosemary Collins

    Erin, you are an amazing woman. Yur wee tumour is nae match fer you. May it ever stay wee and nae glower too much. Much love and blessings!

    Reply
  6. Ugh. I’m sorry. Will be sending prayers.

    Reply
  7. Erin, I just met you (online) and I’m crying in my coffee!
    You are a beautiful person. A gifted writer. A fine human being.
    Fom far away I’m sending support and warmest wishes.
    XO

    Reply
  8. Well said. As usual. Xoxo

    Reply
  9. Erin love, the accordion?! More likely to cause sudden cravings for lederhosen. Now that I know you have taken up the bellows we will just have to form a post-polka punk band and blow that little sucker out of your brain.Seriously, I am here, whatever you might need. xxxooo

    Reply
  10. well hell, if it’s not one thing… your attitude is spot on Erin, sounds like emotional sobriety to me! yet another fascinating experiment in self realization. or something. let me know if y’all need anything!

    Reply
  11. Ahh Erin – as always, you roll with humour at the craziness of what our lives and the world brings. Its a fine quality, and I admire you deeply. sending you strength and love. As the crazy world would have it, another friend in Vancouver is going in for the same thing on Nov 21st. If you see another fine woman dealing with this shit too give her a wave, its likely my friend. all love and light to you

    Reply
  12. Shauna Butterwick

    ErIn,,, WTF!! Can’t believe it – ANYTHING I can do, let me know. I could scrub in for the surgery & bring my ancient nursing skills to bear – maybe not, I would mess it up.

    Sending you love, love, healing, and the may the goddesses of shrinking brain tumours fly your way. xxooshauna

    Reply
  13. Prayers going out to you! Live One Day at a Time and stay positive!

    Reply
  14. Erin!! Thank you for sharing your story. What a incredible perspective you have. This life gives us but one garuntee, this life will be what we allow it to be.
    I haven’t seen you in a long time but you’re someone I always connected with and I thank you for being vulnerable and true in the recount of the most scary, painful, humbling, grateful, completely human time of your life.
    “By the whithering tits of the unfuc#ed mother of Jesus” 😉 I’ll be thinking about you. Xoxo

    Reply
  15. Sending love and light from Fredericton. We are doing the fuck cancer dance for you here. Healing accordion thoughts from all of us.

    Reply
  16. Thinking of you, Erin. Sending more love.

    Reply
  17. dark of the stars

    (delurk)

    Accordion playing! I’m putting on Planet Squeezebox this very minute and thinking of you!

    Reply
  18. Hi Erin, I’m so very sorry to hear your news. I guess I must be smart. I, too, have a brain tumor. But to date it’s benign. I have some sense of how you might be feeling while waiting for you diagnosis. I think that’s the hardest part. Waiting. There isn’t much you can do until then. I thot I would be able to work on acceptance, but I couldn’t so I had to sit in the unknowing. My optimizm one day was overcome by fatalism the next which became a decision to distract myself relentlessly which became…. For the last few days of my wait I was finally able to give it my HP. I’ve completed a few years of 6 month and now yearly check ups. But it still lurks. If you ever need to talk to someone who far away please call. (12503165316) You’re in my heart and prayers.

    Reply
  19. Dear Erin,
    I just read “I have a thing in my head”………..
    I can’t begin to tell you………
    I love you dearly, and every time I see you, I have a blast and feel fortunate to have you as friend, for all what you are, you are such and inspiration to me, I hope we can see each other soon, I really, really hope you can make it on Saturday otherwise I will look for you after I come back from holidays with family in México.
    Muchos besos y un fuerte abrazo,

    Ema

    Reply

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