—
I still can’t really process what happened. The constant upheaval of getting admitted, then adapting to hospital life, then getting released is giving me whiplash. My life feels like a disorganized shit show. I think I need a motivational life coach to help me get my affairs in order: to help me get organized, help me finish the book project, help me toward my goal of financial independence, etc. Those are lofty goals, though. For right now, I just need to stay out of the hospital for longer than a week.
But happily I’m writing this from home, having had a super fun weekend. Natasha is in town. We went to the beach Saturday and later played games with the usual suspects (chill night), and Sunday spent all day at the beach again. Being back at my apartment felt so familiar and so foreign at the same time. Weird. It will take getting used to, for sure, but I’m so excited to be back there.
2/20/16
It’s been eighteen days that I’ve been out of the hospital. Eighteen days!! That’s the longest time I’ve spent out of the hospital since October. Granted I’m still on round-the-clock home IVs, but I’m out living in the world.
And I’m moving to San Francisco. I went to Stanford on the ninth and saw Dr. Mohabir on the tenth, and he worked hard to convince me that I needed to be under his care again. Some of what we discussed:
Hemoptysis—he says it’s deadly, seen too many patients die from it, wants to make getting control of it a priority
Ataluren—his insistence I go off it
My thinking—he says not to focus on long-term lung function but instead, the possibility that I have cepacia syndrome and how to treat
Scheduling—he wants me in clinic every one to two weeks for six months to get me stable and back on track
L.A.—he says flying/driving up to see him every two weeks not workable; that I need to move back up
Marinol—he’s open to starting medical marijuana pills to decrease nausea/pain and increase appetite
Nausea/vomiting—need to get that in check
UCLA regimen—will continue for now minus ataluren
He said he would respect whatever decision I made in terms of where to live but made it clear that he’s the one with the most expertise to treat me. UCLA has no other patients with cepacia. I’m the only one. He’s impressed with Dr. Eshaghian and said the infectious disease docs are great, but they just haven’t seen enough cepacia cases.
I was holding it together until the parking lot. My dad gave me a hug and said he would stand by my decision. I started bawling and said that I couldn’t make the decision myself, I didn’t know what to do. I knew that I would agonize over the decision. Moving again seemed so stressful. He said, “Okay, I’ll decide for you, you’re moving.”
The day was really significant because my dad had been the most upset about Mohabir’s dislike of ataluren and thought his position was wrong. It was good that he came to the appointment because he got to hear the argument from the doctor himself instead of hearing it indirectly through my mom. He became convinced that I should go off ataluren and move up there. We called my mom and told her. She didn’t seem surprised and I came to find out she and Dr. Mohabir had discussed it all before. She had had my dad go with me (very unusual) since he’s the one that understands the medicine and she wanted to make sure he agreed with the plan. She canceled her dinner plans and started looking and found me an apartment online while I was still grieving the fact I had to leave Manhattan Beach. She asked my dad to see it the next day. Within twenty-four hours I had an apartment to move to. I went online to find a roommate. Ari responded immediately!
Since then I’ve adjusted to the idea but am stressed about moving. Very sad to leave the beach but my vision of going back to life the way it was last summer, before I got sick, was not worth clinging to with my health so compromised.
I’m severely atrophied. Starting to gain weight and hoping to turn some of that into muscle. It’s hard to build muscle if you have no excess fat, so people have told me not to start working out until I gain some fat. It’s unreal, though—I went to yoga the other day, to a class that would’ve been so easy eight months ago and kept up for about 5 percent of the class but spent the other 95 percent on my back, in forward fold, or in child’s pose. The instructor even came over to ask if I was okay, and I said, I’m okay; I just spent a long stretch in the hospital so I’m taking it easy and I’m here for the stretching. She looked shocked and just told me to do whatever felt right. That’s precisely why I like yoga. If it was another type of class, the instructor would have said I shouldn’t be there.
I am excited for some independence. But also terrified. I know I’ll miss my family and be homesick at first, especially for Kona! Will miss my mom popping over with food and hanging out for an hour, taking me to Costco, etc. But it will be good for me to be on my own because I know I rely on my mom and dad way too much.
Will start making a photo book to thank them for all their help.
3/6/16
I moved! It’s been such a whirlwind. The surprise was that leaving my apartment was less emotional than I thought it would be. It’s as if my heart was already out the door and all we had left to do was remove my stuff.
3/11/16
It’s been almost two weeks that I’ve been in S.F. and it’s amazing so far. I love waking up in my apartment, opening the blinds, seeing the trees, the water, and the Golden Gate Bridge, the morning light filling the room. Then making my coffee and sitting in the kitchen or living room. Drinking my coffee and eating breakfast. Small rituals that mean so much. In just two weeks I already feel like I have more of a routine than I did in Manhattan Beach.
I’ve been going to the gym every day; don’t remember the last time I skipped a day. It’s so nice there, I can create good workouts for myself, and I’m definitely getting stronger. Curious to see what my lung function is next week. I think my weight is going up, probably as a result of working out and gaining muscle mass. At the gym yesterday I weighed 145 and supposedly had 11.2 percent body fat. My period is still not regular, though, so it might be low.
I was sad when my parents left. It was nice having them here and they did SO much for me. This whole move was only possible because of their involvement. But now it’s time for me to accomplish things—starting with making a daily schedule, writing a to-do list, getting it done, going to the market, cooking for myself, cleaning for myself, scheduling my medical appointments and my drug refills/deliveries, etc. All the little things of daily life that my parents helped me do before. It made me feel incompetent, but at the same time I needed their help.
3/24/16
Going on four weeks in S.F. now. It feels like I got to hit the reset button after the worst health period of my life. Yesterday marked seven weeks out of the hospital and I have trouble comprehending how lucky I am, after more than six months of never staying out longer than a week or two. I’m getting used to the idea of waking up each morning not wondering if I’ll have to go to the ER that day.
This move puts a healthy distance between the worst health period of my life and my newfound semi-stability. But I’m worried about Caleigh. She’s in the hospital post-transplant with a crazy infection in her left lung that showed up as a huge mass on her CT scan. Hearing how hard things are for her right now reminds me how lucky I am. And how unpredictable this disease is.
This apartment, this city, and this lifestyle are so much better for me right now, when I’m on IVs. I’m surrounded by friends so I’m never lonely—except that I ache for Kona whenever I see a dog, and I miss my parents and Maria. I FaceTimed my mom the other day so I could see Kona, but when he heard my voice, he started freaking out and looking for me. I worry that he’s never actually going to come up here and that he’s going to forget about me and he’s not going to be MY dog anymore. Also, times like today, when I’m sick and hanging out at home, I really wish he were here.
Still going to the gym frequently! I’ve been trying different classes. Mostly yoga, but I did a class the other day called Best Butt Ever, haha. And Barre yesterday, which I liked a lot because it reminded me of Pilates. It didn’t make me sweat but still made my muscles burn and incorporated a lot of stretching.
I went to a concert on Tuesday and had a lot of fun, so I’m going to another concert on Sunday. And then two Tuesdays from now, I’m going to a concert at Jason’s apartment!
4/2/16
Read a book with a character that resonates with me. Ina describes that when she became an adult, she felt like a failure because she struggled so much with balancing the responsibilities of work, life, etc., and her mother had made it all look too easy, like a superwoman. In a similar way, my mom sleeps five to six hours a night, wakes up energetic, conquers the gym by 8:00 a.m., works all day, juggles hundreds of friends, manages a household, was a hands-on mom, takes care of her parents, and is a master problem-solver. She just gets shit done and has remarkable energy and that’s just not my personality. I don’t have a lot of energy, I need way more sleep, I can’t just go-go-go. It all just feels inadequate when I look at what other people can do, but especially my mom.
Her role was to be in charge all the time. She set it up that way and wouldn’t have had it any other way.
She worked inside and outside the home, more often at home as I got older, but she always had meetings out of the house. It made it seem to me that working was the normal thing to do, BUT that being there for your kid whenever they might need you was also normal. It was this ideal scenario she created where she had the best of both worlds being a mom and working woman. I admire that she will do anything for her kids. She goes to such extremes to help Micah and me that people joke about things that are “so Diane.” I also admire that she was able to maintain her career and keep her work separate and her clients happy even when we as a family were going through really hard times with my health. And she has a great relationship with her mom.
She is a role model in many ways.
I have followed in her footsteps work-wise so far, sort of forging a nontraditional career path that involves writing and freelancing for multiple clients. I think I’ve also modeled my life after hers in ways I’m not really conscious of. People tell us we’re similar, but in some ways we’re radically different.
I decided to take another path in terms of the pace of life. I think it’s important to “stop and smell the roses,” whereas she just charges through life at a constant fast pace.
She did give me the best advice: Find the joy in every day. That was a good one. I’ve adopted the mantra “Live Happy.”
My mom had lots of behaviors that growing up I said I would NEVER do when I got older. I should have written them down because now I can’t remember what they are. (Seeing the past with rose-colored glasses, I guess.)
Her advice for the twenties: Establish roots (has really swayed me against traveling). Create a community (makes me more inclined to pursue and maintain friendships). Take dating seriously so you don’t turn thirty and wish you were married. Live healthy.
Most important to who I am today: she taught me to prioritize love over all else.
My mom has been a huge part of my life and always will be. I think my job now as an adult is to establish boundaries, and, in a way, moving to San Francisco is the best thing I could have done. Forced to move into my own apartment that’s not a thirty-minute drive from my parents’ house…so important. I already feel like I can breathe (figuratively), it’s more spacious, I’m more relaxed. When I wake up, the day is mine to take charge of and do what I want with it. I get to determine the course of my days, which determines the course of my weeks, which determines ultimately whether I have a life I’m proud of. And when I was living in L.A. last year I wasn’t living a life I was proud of…I look back on that year and I’m like what did I accomplish? How did I grow as a person? Obviously, all the hospitalizations were a challenge, but even before that I feel like I was just regressing from spending so much time at home and allowing my parents to help me as much as they did.
But I don’t hold any of this against my mom anymore. I used to. A letter I wrote to her in 2008 reveals how mad I was:
When I do my treatment is not up to you. If I choose to do it before I go out, I will do it before. If I choose to do it after, I will do it after. It is my decision. Stop treating me like a child and trying to make choices for me. It is not your right or your duty as a parent to do that; your duty as a parent is to support and guide the decisions that I make.
You may calmly suggest, if you wish, that I do treatments by a certain time, but that does not by any means mean that I must do so. You decide to go to sleep when you are tired; I get to decide when I go to sleep. If you don’t like me coming home late and doing treatment, try to remember this: if you don’t allow me to go out, I can sneak out. It is impossible for you to force me to do something against my will. I have always been a good kid, I tell you where I’m going and what I’m doing. However, you seem to not trust my judgment. You seem to think you know what’s best for me better than I do. But you don’t.
I realize that now that I’m an adult it’s my job, not hers, to establish my independence and autonomy. Perhaps she didn’t do the best job in certain ways of setting me up to be a successful adult. But she was also worried that I wasn’t going to live long so I understand why my independence wasn’t her top priority. She just wanted me to live. If I do have kids, a lot of the issues I faced with my mom won’t be relevant, since I won’t have a kid with CF.
4/28/16
I remember the time I went to Bed Bath & Beyond and stood next to Jamie Lee Curtis while picking out a duffel bag for sleepaway camp. She asked if I was shopping to go off to college. It amused me that people thought I was years older than I actually was; I didn’t realize how unusual that is for a CF patient, that most other kids with CF look many years younger than they are. Despite what everyone said—that I would love being tall one day, that they would steal inches off my legs if they could—I wanted to be short. I quite literally would fall asleep at night fantasizing that I’d wake up short. Those critical years I spent hunched over, made worse by a lifetime of coughing, still reveal themselves in my rounded posture today.
I did not have any friends with CF growing up, and thus had no concept of the roller-coaster of illness patients ride, at varying velocities. Waddington’s “epigenetic landscape” model, which I first learned about in human biology classes in college, gives me a framework to understand the way we with CF both can and cannot control our futures. Epigenetics refers to the study of how DNA (your genes) can be modified based on inputs from the environment; genes are regulated structurally and chemically, turned on or off by processes like phosphorylation*6 or methylation.*7 Basically, the epigenetic landscape is a hill that marbles can roll down. Your genes dictate the range of possible endpoints the marbles can roll to, but epigenetic modification determines which endpoint the marble actually falls on.
With cystic fibrosis, I believe our genes determine the various possibilities for the trajectory of illness: how fast our lung function will deteriorate, how likely our lungs are to be colonized by opportunistic pathogens, whether our lungs or our pancreas or our liver will be the most affected organ. But within that range of possibilities, environmental factors like access to good healthcare, age of diagnosis, where we live, what family we’re born into, and random chance all contribute to determining our health outcomes. I conceptualize it like this: our genes dictate the endpoint; our choices, environment, and chance dictate how fast we get there and the rockiness of the descent.
* * *
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My CF friendships started in the hospital, in walks with masks on and in time spent sitting outside by the fountain six feet apart. To this day, I maintain them through texting, phones, and social media. Hav
ing friends with my same disease satisfied my desire for something I didn’t even realize I’d wanted: a confidante, someone who understood exactly what I live with day to day. My CF friends have offered strength, resilience, and unwavering support to help pull me through the toughest times. Before Melissa went on life support, lived in the ICU for nearly a month, and then had a successful lung transplant, we were talking nearly every day over text while we both did our vest and nebulizer treatments. Now, she’s slowly recovering from her lung transplant. Another friend with CF died in late August last year, shattering my world and forcing me to pick up the pieces while simultaneously battling my own wildly unstable health. When I found out, I didn’t sleep for days; at night, I would get out of bed, seeking a distraction from grief, and lie on the kitchen floor with Kona, listening to music.
The range of disease trajectories is huge—from people who need transplants as teenagers to people who are in their twenties with 90 percent lung function. It puts into perspective where I am on the spectrum, where it’s likely I’ll go, and how fast. It’s troubling to see someone once healthier than me either die or progress to end-stage disease. Beyond the bone-deep ache and grief I feel for their families, I preemptively ache and grieve for mine, knowing that one day they will probably have to bury me.
People have always called me an inspiration, but I’m not. I do sweat the small stuff, just like everyone else. I just happen to also have to sweat the big, life-or-death stuff. The burden of being an inspiration is heavy, because it means you have to be positive all the time, no matter what you’re going through.
It reminds me of the Stanford Duck Syndrome. Despite its cutesy name, it’s no fucking joke. Here’s the idea: At Stanford, students are like ducks gliding on the water. On the surface, when ducks move, no one sees their legs below the water, paddling furiously to stay afloat. Students at Stanford, from the outside, are the image of perfection; they’re able to maintain straight As, intimidating résumés, and a laundry list of extracurriculars while simultaneously finding time to eat well, exercise, party, see friends, travel, and look good. All the while it’s supposed to look easy. Mental health issues are taboo among the student body; since everyone else seems like they’re effortlessly getting by, each person struggling with their mental health feels alone. It’s a vicious cycle of silence and struggle, which has driven some to suicide.
Salt in My Soul Page 16