“The only way of knowing a person is to love them without hope.”

I was working on a paper last night and I found that quote as I pored through the works of Walter Benjamin, trying to understand memory, love, images, hope. I still don’t understand but I found this quote very powerful. You see this weekend I found myself crumbling under the weight of the unconditional love being thrown at me from all angles.

Friday, despite my inability to reach a simple goal and finish my finals, I had my “Smell ya later, Herbert!” party. This after spending a lovely afternoon with two of my closest friends and truly mentors. They gave me party tips and let me vent. They shared key lime pie with me and it was delightful. After lunch, fighting with a shopping cart in the Target parking lot for a solid 30 minutes and a confused and haphazard trip to the liquor store, it was party time. It went off without a hitch. I had good friends all around, new and old, and I think that people really enjoyed such clean toilets to pee and poop in… JK But really, the party was fun. I had these pants on:

Yes, that is glitter.

Yes, that is glitter.

And, even though the glittery sequins between my massive thighs kept getting stuck together and pinning my legs together, I had a great time. It seems, so did everyone else. The best part? Though the party was about Herbert, or really my health, it wasn’t. It was about getting past it. It was about living beyond it. It was about loving each other truly and as hard as possible. Loving hard. We laughed, we smashed a brain pinata, we drank Sangria that was admittedly too strong. We even ate tacos at 2 in the morning. I woke up the next morning on a love high. I felt powerful enough to conquer anything. Though I did feel slightly slowed down from the Sangria headache left behind after I ate all the fruit out of the pitcher…Whoops. I set out that day for my acoustic neuroma support group meeting. Though I was wearing dirty clothes off the floor, my hair was unkempt, my make up undone, I felt radiant. I had love. Love given to me with no hope or expectation of return. It was unconditional. There were no expectations that I would do or say anything, just that I be and that we all laugh. I wore the sweatshirt I had been wearing all day in planning my party, it read “Take a Chance on Love.”

Take a chance on love. And even more, take a chance on life. The acoustic neuroma support group that was facilitated by the Acoustic Neuroma Association was in the modest lobby of a building in the DTC. I came in cautiously, nervous for my first group support session. It felt like I was in a movie and magically I had the script memorized. “Hi what is your name?” asked a lovely woman named Roberta. “Samira.” I quietly responded. She shook my hand strong, and lovingly. “Welcome!” she said enthusiastically, “are you pre-treatment or post?” I was relieved. The pre-text of explaining what was going on, the constant downplaying and smiling was not required. Roberta knew, she understood. She had been there. Literally. I met a room full of women who were strikingly older than myself. I was the only one in the room who hadn’t received treatment and given that the next support meeting is not until March I felt blessed that I had come across one just a few days before surgery. I met lovely women. That took my hand, held it just long enough to say hey, I get it, like actually and if and when you need me, I’m here. I got to try out a baha hearing device, which, even with my serviceable hearing made a substantial difference and suddenly, I was excited. I got this. I can hear. I got this. After the meeting and chatting with the women beside me several of them came to me, one at a time, telling me what surgery was for them, wishing me luck, telling me my attitude was just in the right place and giving me knowing, confident glances. It was so powerful. One woman, a beautiful and radiant mother of two, who had the biggest AN of anyone at the meeting, offered to call me the night before my surgery as Roberta had done for her. It was amazing. I walked out thinking, I took a chance, and it paid off. I am already grateful for that phone call, though I haven’t been able to bring myself to talk much these days. I’m grateful it is coming, and oddly, I am looking forward to it. I know it will help. I know it will make it easier. I just know.

That night I went to a Christmas party for my Dad’s rotary club. Again I was surrounded by love and suddenly I began to feel suffocated. There were many people whose love and presence was welcome, expected. The long family friends, the RYLA companions, my professor who changed the way I see and understand the world, that made me know I could be great. I expected and even hoped for their support. I was endlessly grateful for their support. Then… there were the strangers. No, Herbert is not a secret but he is is mine. Herbert is mine BUT HE IS NOT ME. I am not the sum of my brain tumor. I am more than that. Suddenly normal mingling had shifted to sad, pitiful eyes. I’d say my name and quietly hope the hot pink lipstick would distract from my sparkly sweatshirt and lululemon pants I had tried dispassionately to pass off as dressed up, or really just dressed. AS soon as my name was uttered this happened:

“Oh no… I heard. The brain tumor.”

“Yup,” I would respond. “It’s just a blip in the radar, my journey on the path to life’s next great adventure!”

“Oh, that is so sweet, you aren’t even sad. It’s just like the time I broke my femur.”

“On no!” I said “You broke your femur? That sounds terrible. Just awful!”

Then we’d talk about a femur. Or a shoulder. Or someone’s self-described mediocre son, looking for a date…

By the end of the night I was exhausted. I was unpacked, papers were unfinished and I had nothing left. Two days of very little sleep, lots of work and endless socializing had caught up to me. I chatted with my beloved brother for a few minutes where he shared, gave me advice and indicated his deep love for me. He called my blog “living out loud” which in my mind made me chuckle. I’m not trying to live out loud here, I’m trying to live along side. I am trying to walk alongside anyone and everyone who has ever felt challenged. I am not expanding what is private I am showing the world that the things we reserve just for ourselves and our select family of choice can do a world of good for everyone else and for people to see, we all have challenges. Some great, some small, but all significant. My thoughts here are measured, and your responses are humbling, thoughtful and I learn from them as I hang on your every word. I tried to go home, to sleep one last night in my own bed, and I couldn’t get out of my parents gate. Suddenly I stood there, in the dark, and cried. and screamed, and stomped my feet. I wasn’t sad, I wasn’t even angry. I was so confused. So much love, so much good, so much support and it was pouring over. There was no way to contain it. I was literally crumbling under the weight of the love I was given. I didn’t know how to be gracious with it, I didn’t know how to let it all in and share it. I didn’t think I could do this all of a sudden.

Then, after a long drive back to Boulder, I realized something. It is because of this love that I can do this. I absolutely can and I will and I will turn around and I will pay it forward and give it back. Hell, I’ll give it left and right, frontwards and backwards. I’ll love you all , all around, all day long.

I arrived in Arizona tonight. Jason, my parents and I are staying in a lovely little condo with a creepy horse painting on one wall, opposite some parrots on the other wall. The wildlife really doesn’t go together but nevertheless it is quite lovely. I just read 2 of the nicest emails I have ever gotten and after swallowing my emotion so I don’t cry until I swell beyond the parameters of the MRI machine, I decided to update you guys on how I am doing. I can feel the anxiety rising in me each night and every morning. Throughout the day I am able to camouflage it, though I am better at that around some of you more than others. Tomorrow my siblings and family of choice begin to arrive and I am grateful that each of them will be here to offer something different. I hope that I can give it back to them in some way. In the morning I’ll get pre-surgical testing. Wednesday I’ll meet my neuro-otologist and then Thursday is the big day… It is surreal to get so close to something that always seemed like a far away thing we talked about but never did. Like my trip to Hawaii. I talk about it all the time. Haven’t done it… yet. Though I can feel my body becoming nervous, I am doing okay. I am beginning to get concerned about what the heck my loved ones will do during the surgery, I hope they can relax and act casual. And I hope they know that no matter what the outcome, even if I can’t hear them tell me and I can’t hear myself tell them after surgery, or even if it comes out of a weird little Quasimodo face, I love them. I love them without hope and expectation. When I say that I am hopelessly in love with the people who support me, it means that nothing can break it. Nothing can change it and no one will shift it. It is an honest love, unencumbered and messy. It’s real, and it is ours and each day we learn from it, grow with it. So thanks. Thanks for the love. There is so much of it I hardly know what to do with it all.

Peace and love –

Samira

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3 thoughts on ““The only way of knowing a person is to love them without hope.”

  1. Good luck tomorrow, I’ll be rooting for you. Remember, these next few weeks are just a tiny fraction of your life, and when it’s over you’ll have a bunch of impressive stories to tell people. And then, in a few months, you’ll remember the gist (“Yeah, I had brain surgery”), but the details will be forgotten.

    You can do this; be strong.

    Bob

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