* * *
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Today I had an interview with Beth Pratt of National Wildlife Federation, who was so interesting and will be a great resource for the book. Tomorrow I will interview Lili Singer from Theodore Payne Foundation for Wildflowers and Native Plants. Also talking to Garry George from Audubon, Lisa Fimiani from Ballona Wetlands, and Carl Richards (landscape photographer). Also going to look at an apartment in Manhattan Beach with Lauren! It looks like a gorgeous place.
2/17/15
I think I’m more vulnerable than I used to be to the idea of death. I don’t know if that’s just right now, this very week, because I’m sick, or if it’s just a sensitivity that’s increasing over time. Two things spurred this: First, the Parenthood finale. The death of Zeek, the grandfather, left me bawling, and not just tears but the entire body shaking kind of bawling. I think it’s where my mind wandered that makes me feel unsettled.
When Camille walked in and saw Zeek lying on his chair, and she called to him and he didn’t respond, triggered the thought that one day my own parents might have that experience with me, and I thought about how they would feel in that moment and how they would react. It physically pains me to think of it, but I can’t not think of it when I see death in any form. And then when they’re scattering his ashes, I think about the fact that my own grandpa will die, maybe soon. The emphasis on family is so strong, it makes me realize I don’t always express how important my family is to me.
In the show they have flash-forwards to where all the characters are in a few years, new babies, new relationships, family still strong, lives going forward in the most predictable, wonderful way, and I think that that will never be the way my life goes and that makes me sad. Sad for me and for all the people that will be affected. When I get sick, my parents stop their lives. If I were sick to the point that Caleigh is sick, I would feel terrible. It’s enough to be scared myself, but to know that my own situation might be taking away happiness from others is devastating.
The second was way more worrisome. I woke up at 6:00 a.m. yesterday and couldn’t fall back asleep because I couldn’t breathe, had chest pain, and was coughing. I made coffee, did treatment, and then was feeling ambitious (because I was up so early and because of the caffeine), so I drove to CorePower Yoga for a 9:00 a.m. class, which I never get to. It made me happy to be up and out doing something that early. Because of how much time I’m stuck indoors, being out and about in the morning is precious.
I was thinking about how good I have it right now—I’m healthy enough that even when I’m sick, I can move my body and do some exercise. I can get through a hot power yoga class alongside healthy people. I live close to the ocean and can surf. I have incredible friends who I love and have fun with. I have a degree from Stanford. I have incredible family support. I have a new puppy who loves me. The word I’ve used the most in this paragraph is love—my life is filled with love, with fun experiences, with happiness. And I should have the attitude that I’m so so lucky, and most of the time I do.
But there are moments when it strikes me that all of the things I love will be lost. Breathing will get harder, at some point I’ll have to live at home so my parents can help me full-time. A time when I’ll get disability money from the government because I can’t work. I may or may not find someone who can hang with my disease, who can support me in the way I need to be supported. Sometimes I’m hopeful about that, but oftentimes I’m not, because even if there were people who would be good enough to do it, I might not let them in; even though I seem open about some things, ultimately I’m private, and have never let anyone in. I should not have envy, I recognize that it’s a dangerous emotion, but I do for people who have freedom, who can travel, who can see other parts of the world and make their own decisions and do things without worrying that it will drive them to the hospital in the future.
All this thinking led me to the moment where I realized—this might be as good as it gets. It might only get worse from here. When things are going well, I often think something bad is about to come, because I’ve learned things can only go so well for a limited amount of time. I hate the impending sense of doom, that this goodness I’m living right now cannot last, will not last, that it will be stripped away. The higher you fly, the farther you fall. The healthier I am, the more I start to feel sturdy and strong and capable and normal, the more the slap of reality stings when it knocks me down, shows me my fragility, reminds me that my innards are working against me, not for me.
I thought, if this is as good as it gets, and I died right now, would that be so bad? It’s the quit-while-you’re-ahead mentality. Obviously I would never act on that. I’m not depressed, I’ve actually been quite happy and filled with gratitude lately. But I was thinking, if I died right now, it would be like ripping off the Band-Aid. My family and the others who care about me would be devastated. And it would be a huge thing, the thing that happens when people commit suicide where people say, “How could they do this to me? How could they do this to their mother?” etc. I’ve always been shocked when people say that, because suicide is not about anyone else. It’s a last resort for a person who feels they have no other option. That’s not how I feel right now.
If I do die soon (from CF) and someone reads this, they might think I was suicidal. But I’m not. I was just thinking about how my death would cause a lot of pain initially, but then my parents and friends could live their lives without having to worry about me, without having to take care of me. It kills me how much pain I might cause others if I die.
Through all of these meandering thoughts, I’m struck by how much more emotionally vulnerable I am than I realized. The fact that I was crying so hard on the way back from yoga that I almost didn’t go home (because a song on the radio made me think about suicide) and whether a quick death would save me and my family from pain and suffering. And that my mind went where it did because of a TV show finale makes me realize that my emotional state is fragile.
I’m trying so hard to shift my perspective, to realize that I don’t need to be outside of California or far away from family to be happy; I didn’t grow up in freaking Minnesota, I grew up in L.A. in a beautiful climate with beautiful nature and beaches nearby, so if I can’t climb mountains and surf faraway beaches in Bali and meet indigenous people who are hungry farmers in Brazil, life will still be okay. It’s just the fact that those things were taken away from me forcefully by my disease that makes it hard. I might have come to my own conclusion that I’d be happier here in California anyway, but the fact that it wasn’t my own choice is the rub.
* * *
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I need to turn over a new leaf, to start a new, happy life. I’m going to finish Susan’s book and do other work that fits my lifestyle. I’m going to meet beachy smart surfer people and have a social life that makes me happy. Maybe I’ll meet a guy who is right in every way, who I can finally let myself fall for completely. Maybe I’ll live a really long time and decide that having kids isn’t a terrible irresponsible choice, and I’ll have a family and a dog and a husband, and maybe some medicine will come around that’s basically a cure and then CF will just become a maintenance disease instead of a progressive one. Maybe, maybe, maybe.
I need to shut out the impending-doom feeling that arrives at the slightest reminder of death. I need to be stronger and not feel like I’m losing my backbone. I’m sick again, and this particular exacerbation has left me terrified, as if this is my first time at the rodeo. It’s so normal, it’s so routine, but because I wasn’t expecting it, it feels harder to process that I might need to go to the hospital again. In Stanford it was routine, expected, almost comfortable (not really, but as close to comfortable as an exacerbation can be).
I was counting on ataluren, living at home, and being in SoCal to escape CF’s chokehold. But the hold was still there, just as strong as ever. Letting me have a moment of normalcy, and for that I’m grateful
but I’m also pissed. It’s playing a game with me and I have to be strong but realistic enough to know that even when I have a period that’s good, there’s always sickness around the corner and it’s not the end of my world. I go in, do IVs, get better. That’s what I have to believe for myself, because when I read Caleigh’s posts and I think of that as my future, it makes me think that quitting while ahead is easier.
3/17/15
Well, I’ve emerged from the hellhole of RSV (respiratory syncytial virus, what it turned out I had) and a new chapter is beginning to unfold. I’ve started moving my stuff into my new Manhattan Beach apartment, which I LOVE. It’s two blocks from the beach and I can tell it will be an awesome active lifestyle there. I booked a trip to Hawaii, which is where I am now. This trip is such a trip (like the mind-fuck kind of trip, not a literal trip)—it feels so long since I’ve been here, but also like no time has passed. The weirdest thing is that the last time I saw Shawn in person we were on such a different level with our friendship, relationship, whatever you want to call it. It’s kind of a guessing game as to how to act around him, like whether we’re just friends or something more, and I don’t know what he wants, whether he still likes me (although I think he still does). I think he’s conflicted, I’m conflicted.
Hawaii has been amazing so far. Yesterday, the day we arrived, we gained time so it was a long day but we packed a lot of fun into it!
Today I woke up at 5:00 a.m. naturally—thank you, jet lag! We were in the water from 6:15 to 6:45-ish, and it was stunning. Incredible. It was dark when we got in the water, the sun hadn’t risen yet, so we watched it rise from the canoe in the water. Plus surfing the waves on the canoe was awesome. The water was a gorgeous shade of blue and early-morning surfing has a calmness to it that afternoon surfing does not.
I’m super happy to be here and already feeling so much better in my lungs. Which makes my head feel better. The magical combo of sun and salt makes me recover a lot faster and surfing the warm water in Oahu is the best medicine.
4/7/15
Sometimes I feel like my life is a novel with someone writing it. Making sure there are enough high points and low points, drama and emotion, conflict and resolution. That’s why whenever there’s a long period of good times, I have the sinking feeling that something bad is to come, that the good, contented stability can’t last. Because contented stability doesn’t make for a good read.
It also has such distinct chapters, with seemingly abrupt transitions between chapters. One month I’m sick with RSV, living in Beverly Hills, and spending time with my puppy Kona. Then, boom, in Stanford, nervous breakdown about work and life. Then back home, moving stuff to Manhattan Beach apartment, then an unplanned trip to Hawaii.
In Hawaii an abrupt turnaround and I’m feeling better, thrown back into fun with Shawn as if no time had passed, surfing and paddle-boarding, canoeing and volleyball. Then in Maui with Ali and our moms on a mother-daughter getaway, crashing from how much I pushed myself in Oahu, thinking I’ll need to be admitted and hoping I can put it off until after a road trip with Shawn. Then back to L.A., living at the beach officially, spending my first night there having so much fun. Then Shawn in town, which was a mind-twister. My two completely separate worlds colliding, then spending time with his family in Santa Ana, going to Club 33 and a day at Disneyland with them and spending the night in his family home.
I need to reflect on how strange and unusual my life is and how book-like it seems and not beat myself up for not journaling more often (even though I want to remember every minute of it).
4/8/15
I just called the clinic to talk to Ronnie*1 to tell them about my symptoms and my voice was breaking the whole time on the phone. I can’t keep it together and it’s pathetic. I was sitting outside in the sunshine and feeling sorry for myself, which makes me feel worse because I know it’s absurd. And when I hung up the phone after leaving a message, I put my head between my knees and couldn’t stop crying. I think these inexplicable tears are more frustrated tears, self-directed, scornful tears, because I think I brought this sickness on myself and now can’t deal with it.
My mom saw how stressed I was and mentioned that she could find someone to replace me on Susan’s book. The job is an opportunity of a lifetime—to be paid to write about the environment and work for the most awesome woman who is so incredibly understanding about everything in my life and so flexible on deadlines. I can’t bear not to finish.
But if I can’t even finish one writing job, my first writing job out of college, what hope is there for me to ever not only get another job but have the confidence to look for one? I’m just hemorrhaging my parents’ money and my guilt about that makes me sick because they work so hard every day and will work way after they could have retired so that I can have a good life, when I can’t even suck it up and work a few hours a day, sick OR healthy.
4/23/15
“We’ve come to think of healing in mechanical terms, as repairing something broken, like fixing a flat tire. But for most of human history healing has meant more than repairing the body. Healing has meant restoring a sense of wholeness to a person—or even a relationship or community.”
This is from the story I produced about cystic fibrosis and the environment, formerly known as “Biome,” now called “Salted Wounds.” It played yesterday on the podcast State of the Human. The Senior Reflection class and Stanford Storytelling Project are amazing!!
4/29/15
Jesse is writing a song for me!!! She wrote one before, but it was too “happy.” CF is a mind-fuck and any song about it should reflect that. I sent her a detailed note about what living with CF is like. Can’t wait to see what she does with it!
5/1/15
Spoke today in Margot’s Medical Genetics class at Cal State Northridge. It really affected some of the students, hearing my story. They couldn’t believe what my life is like. They couldn’t reconcile how I look with my reality. Their questions were so widespread; they asked about drug development, my emotional resilience, and what dating with disease was like…the whole range.
I was touched that all these people who didn’t know me felt like my “speech” made them think I was open enough to answer those kinds of questions honestly, which I did. It made me want to do more speaking where I’m not reading from a piece of paper, but just talking candidly in front of a group of people who actually want to listen and to learn.
I was dreading waking up early for it, driving all the way to Northridge, etc. But it was totally worth it.
5/26/15
Caleigh is my hero! She was part of a short film for The Happiness Stories, a very cool project!
6/8/15
The past few weeks have really started to feel like I live in Manhattan Beach. Like I’m not an impostor when I say I live here. I have routines. Yoga. Surfing. Volleyball. I’ve been going to the grocery store (occasionally) and making food. I’ve been hanging out with friends and having so much fun.
7/20/15
Had this idea today that I wanted to write down before it leaves my mind or I stop feeling inspired or I forget it or something inside me tells me it’s not possible.
I want to start an online media source (podcast? website?) that tells the stories of people who have struggled with something in their life and found hope somewhere. Anything from chronic illness to poverty to grief to depression, etc. The hope can be from anywhere, unexpected places.
Names to consider:
–re: life (about life, but also implying some kind of renewal/starting over/)
–Project Redemption (or The Redemption Project)
–The hope-knock life (play on words of hope and hard-knock life)
8/29/15
“Breathe deeply, until sweet air extinguishes the burn of fear in your lungs and every breath is a beautiful refusal to become anything less than infinite.”
Kari died yesterday. She was a hospital buddy, but more than that, she held a torch that illuminated a new direction for me at a time when my health had left me in a hopeless terror. She was a friend and a fighter with a radiant goodness and fierce compassion, smiling her sweet smile no matter how sick she was. The world became a little bit darker today, when Kari lost her battle with CF. I’m stunned and sickened.
Rest in peace, Kari. So many people loved you. Breathe easy. You are infinite.
9/7/15
I want to get a stick and poke tattoo of the letters LXV—65 in Roman numerals. Caleigh’s brother Michael got that tattooed on his inner arm and it looks sick, and I would want to do it on my inner wrist but a lot smaller, so it could be covered with bangles or a watch. I Facebook messaged him to ask how he would feel if I stole his idea and he was like it’s totally fine, art isn’t owned, I think it would be great if you got it!
10/11/15
Melissa is in the ICU at Stanford, fighting desperately for her life. Now is when it would be good to believe in prayer. She’s a mermaid, my soul sister.
10/16/15
I clenched and unclenched, then curled and uncurled my toes as I lay in bed, my torso and neck rigid from my efforts not to cough. With shallow breaths I counted inhales, 1, 2, 3, and exhales, 4, 5, 6, trying to pay attention to the TED Radio Hour podcast I often listen to while falling asleep. On this night, though, at 10:00 p.m. on October 12, 2015, nothing could distract me from my physical pain and discomfort or my emotional anxiety. My throat was sore from the hacking cough I’d had all day, my lungs searing with the pain of pleurisy and infection. My mind was numb from the half-bottle of cough syrup I’d chugged to prevent bronchospasms, but also racing with the fear of what another sleepless night would do to me.
Salt in My Soul Page 12