Clark and I loved to spend Friday or Saturday evenings drinking cases of PBR cans and having pop song singalongs. It was really easy for him to look up the tabs to something and quickly figure out how to play it, and we had a few favorites. We’d harmonize for renditions of When in Rome – “The Promise” on a weekly basis. I really miss it, especially since we would make each other laugh by imitating the way the lead singer enunciates words like “shout.”
Also, my new friend came to visit me this weekend. He was so delightful. I had the best time.
“Dr. Pardi had gone into the field because she thought her experience as a patient would make her a better doctor. Now she came face to face with all the ambiguities of death, and of her profession.”
“After very painful enemas and a colonoscopy, the team of doctors suspected that inoperable tumors were adding to the blockage. Yet Dr. Pardi demanded more enemas.”
“She died without ever learning the extent of her disease. Her husband said that she had tumors in both lungs, her liver, the lining of her small intestines, her colon and her bones.”
Also, today I got into a fender-bender. I was on my way to mom’s, and after the accident I could no longer drive my car to Fairfax. The moonwagon’s front bumper was dragging on the ground at one side. I pulled over and was trying to re-secure it enough so that I could drive it home, and this man came over with a really thick Minnesotan accent. He and his wife and preteen son were on vacation. He started tugging at the bumper and trying to put it back safely. Then we searched my car for something to rope it together with; I had a garbage bag in there, so we used the ties from the top to attach the bumper. His family came over and we chatted a bit, and they were so nice, and I couldn’t stop crying because they were so wonderful. The man kept reassuring me that this was no big deal. “Do you have kids?” he asked. “No!” I laughed through my tears, and then turned to his son and said, “This will be you in 15 years!” I couldn’t quite express that the reason I was crying was because of them.
“A Small Good Thing,” which Jessie sent to me today because she thought of it and it reminded her of me. I read it, and I loved it. I want all of the sentences in my writing to be like these: “They didn’t say anything. But they seemed to feel each other’s insides now, as though the worry had made them transparent in a perfectly natural way.”
Food is such an enjoyable part of my day now. Jessica and I eat pho every chance we get, and I love having others cook for me. But when Clark was sick and dying, I didn’t think about eating at all. MomPam would shove an english muffin with peanut butter on it into my hands every morning. “EAT!” she’d say, forcefully. There were a few times that I can remember in hospice where, though I couldn’t manage to feed myself, others brought me food, and I took such comfort from eating it. Lili and Ann brought me barbeque and fried okra. On a different day, hunger struck, and all I wanted was a cheeseburger. It was the middle of the afternoon. I called my friend Basla, who is vegan, and she brought me one. And I hadn’t yet become friends with my dear Amanda, but I woke up from a nap one day to find a bag of Whole Foods groceries outside the door to Clark’s room. She’d brought me grapeleaves and frozen Annie’s and fruit. I appreciated these gestures more than I can say. “Appreciate” doesn’t even feel like the right word.
Advice I took today: To soak it up and put a little peace in your pocket. Exactly what I did for about an hour, pre-interview.
I got off the elevator, and there was a room with some old works, and I hurried past them because I could already see what was waiting ahead. I did a lap and then sat on the bench and all I could hear was stillness punctuated by my own breath in my ears. The only movement in the room was happening in the space between my belly and my my chest – this rise and fall of excitement and emotion. Alone at the installation on a Thursday at 2 p.m. is the only way to see this. And I’m cool with the fact that the security guard saw me cry.
He was in the hospital recovering from the surgery on his belly, and I was at work, and we were chatting online. I found this today during one of my “where was I one year ago?” moments. Even though looking at things like this make me so sad, doing it reminds me of how strong I am.
Clark: babies, did they say the next treatment is rough? like IL-2? me: the one they want to do to you? Clark: yes me: i don’t think anything compares to IL2.
but i think it is semi rough. i think it’s less puking, pooping, ill feeling and more weak, tired. however, IL2 has a 5% success rate, the other treatment, a 75.
so i think that makes a difference too. i was reading testimonies of people who have been cured by the treatment, this was a few months ago, and the one guy wrote that absolutely nothing compares to IL2.
honey? Clark: i can;t stop crying
its hard to read the computer
i’m so happy me: yes baby Clark:
we are going to do it baby me: i’m so happy too
i know we are Clark: we got it me: you are amazing, and we are amazing
it’s been hard but you never gave up Clark: all because of you me: i love you clark Clark: i love you reba
You guys, I’m real excited about this Editors show on Sunday. I was talking about them with Lauren last night, and couldn’t figure out if the music is actually good or if I’m so blinded by my undying love for Tom Smith that it skews my ability to think critically.
With the opening notes of this cover of the Talking Heads’ “Road to Nowhere,” I get tears in my eyes (thank you, Instaboner!). And then there are photos like this one (obvs we are looking at the third one from the left here):
I was at an Editors show the night I first drunk-dialed Clark (which led to a week-long lapse in communication). And I took Clark to an Editors show a few months into our relationship, which was kind of hard for him because I was swooning over this dreamy English frontman and paying zero attention to him. But he was a total trooper about it! And now, Tom Smith, we meet again. I know it’s ridiculous, but there are lyrics like, “In the end, all you can hope for / Is the love you’ve felt to equal the pain you’ve gone through,” and “You burn like a bouncing cigarette,” that I have somehow convinced myself are the epitome of poetic. Because they are coming out of that mouth up there.
“Jailor’s Daughter” is one of my favorite songs that Clark wrote. There’s so much beauty in these lines: “Lately I am reaching for what I thought was not worth keeping” and “This day comes around, it reminds me of what I forgot about.”
Today’s Modern Love references the story: “One story is that back in the third century, a saint named Valentine, who faced execution for officiating illegal marriages, fell in love with his jailer’s daughter. Somehow he wrote and delivered a card to her that he signed, ‘From your Valentine.’ Then he was killed.”
Then editor Daniel Jones answers the question, “What is love?”
“If I were Spock from “Star Trek,” I would explain that human love is a combination of three emotions or impulses: desire, vulnerability and bravery. Desire makes one feel vulnerable, which then requires one to be brave.
Since I’m not Spock, I will tell a story.
Say you decide to adopt a baby girl in China. You receive her photo, put it on your refrigerator and gaze at it as the months pass, until finally you’re halfway around the world, holding her in your arms, tears of joy streaming down your face.
But later in your hotel room, after undressing her, you discover worrisome physical signs, in particular a scar on her spine. You call the doctor, then head to the hospital for examinations and CT scans, where you are told the following: she suffered botched spinal surgery that caused nerve damage. Soon she will lose all bladder and bowel control. Oh, and she will be paralyzed for life. We’re so sorry.
But the adoption agency offers you a choice: keep this damaged baby, or trade her in for a healthier one.
You don’t even know about the trials yet to come, about the alarming diagnoses she’ll receive back home, the terrifying seizures you’ll witness. Nor do you know about the happy ending that is years off, when she comes through it all and is perfectly fine. You have to decide now. This is your test. What do you do?
If you’re Elizabeth Fitzsimons, who told this story here one Mother’s Day, you say: “We don’t want another baby. We want our baby, the one sleeping right over there. She’s our daughter.”
That’s love. Anyone can have it. All it requires is a little bravery. Or a lot.”
Hey, you can have this amazing boyfriend who is going to love the shit out of you, and the relationship will force you to know and own the definition of unconditional love, but he’s going to be taken away from you in less than two years. Leading up to that, you’re going to have to do a number of things, like change his diaper, physically force poop out of his butt, help him walk, bathe him, and make sure he gets his painkillers on time.
Not taking the “out” Clark offered me when he was first diagnosed is the best decision I’ve ever made.
I think Jens Lekman – Pocketful of Money is one of the best songs ever. I’ve just returned to it, and I think I’ve listened to it at least 15 times today. I love when this happens.
