Freshman year was a year of introduction frenzy, meeting others in CoHo,*2 on Wilbur Field, in the dining hall, at a friend’s pregame. The people who lived in my dorm saw me do treatment and thus knew about my condition, but people I ate with, partied with, sat in class with, roamed the campus with, didn’t ask me about it so I never brought it up. I popped pills all the time, coughed a ton, missed a lot of class (and people talk), so I assumed everyone knew. I found out later on, when I started being hospitalized all the time, that a bunch of people did not know.
Telling people that you have a life-threatening disease has a way of making people extremely uncomfortable. The rare few who respond exactly how I hope they will are usually the ones who become my closest friends. I worry people will view me differently, worry about what they say in front of me, worry what’s okay to ask and what things I’d rather not talk about. My preference is for people to ask but I wonder if the burden is on me to disclose.
12/12/15
It’s an important day today, the two-month mark from when I got admitted to UCLA hospital for this tumultuous, challenging, soul-testing period. It’s been two months since my birthday, which came and went before I had the chance to celebrate. Two months since I’ve lived within these hospital walls. One year since I was last admitted at Stanford Hospital—a place that felt like home but is now a distant memory. It’s amazing how the tricks of time change things, distorting and morphing perceptions and attachments. Now UCLA feels like home.
I fondly remember the days when college friends could visit me at Stanford Hospital. Being in a huge hospital where I could walk thousands of steps, see trees and ducks and water and an extensive collection of beautiful artwork. I could sunbathe and bump into people I knew from school, all without leaving hospital grounds.
But I did leave the grounds during breaks from IVs—sneaking out with my mom daily, walking the ten to fifteen minutes it takes to get to the Stanford Shopping Center. Getting juice from Pressed, having my hair washed at Hair International, drinking piping hot coconut ginger or masala chai tea from Teavana. Being close enough for my professors (James Campbell, Sue McConnell) to visit. Just being in college—having that sense of purpose, that identity, that attachment to a prestigious university—said enough that people knew I was smart.
I’m tearing from these memories. Not because they’re bad, not because they’re great, but because they’re over. It feels like that period of my life ended abruptly, and not because I wanted it to. I didn’t want to let go.
And I figured that when I did let go, it would be because I was on my next wild adventure—traveling in New Zealand or Australia, living in Hawaii or San Diego, having a job, literally doing anything besides being in L.A. But the crazy thing is, now that I do live in L.A., I’m entrapped in comfort. Sucked into safety. And not just the emotional safety that drives people to stay close to home: I mean the literal safety of my survival. I don’t feel that I’m at a stage of my life where I can afford to live far from my family. They do too much. As much as I hate to admit it, I need them too much. I sacrificed health to go to Stanford—maybe I would have declined no matter what, but I definitely declined more by being away at college. It was worth it, 100 percent worth it. I wouldn’t go back and change a thing, except maybe I would delete my period of depression.
When I graduated from Stanford one year ago, I never envisioned that 2015 would pan out the way it did. I fully expected to maintain my connection to Stanford, both through close college friendships and by frequent visits to see doctors once every month or so. I figured whenever I needed to be admitted, it would be there. I did not realize that I would live in L.A., and that when I got sick, I would need to be hospitalized here—that flying back would be too dangerous. I figured my care in L.A. was temporary and I would either stick with Stanford or switch to San Diego (if I decide to move there).
But now, more than ever before, my life is dominated by fear. No, that’s too extreme. I don’t feel fear in every moment. It’s my decisions that are driven by fear. My decision not to get a part-time job and just freelance is driven by fear. My decision not to move to San Diego is driven by my fear of living in a new city alone, too far from my family and Kona.
I’m listening to Trevor Hall’s new album right now in my hospital room, alone at UCLA (which is rare, and right now, appreciated), mourning this transition. I’m happy here (as happy as one can be spending two months in a hospital) so it’s not that I’m suffering, nor do I think Stanford is the only place for me. It was just my place. My home. And when you lose a home you have to mourn it, which is something I haven’t had the chance to do—mostly because before this period, the transition didn’t feel complete. Now, with the entire staff of Izzy’s Deli knowing me from my daily visits, and the hospital staff recognizing me from taking care of me for so long, this is my new place, and I know that it’s a good place.
Being in the hospital this much does weird things to your brain. It’s almost scary that it feels so normal to be here, that being out of the hospital is what feels unnatural. The idea of being at my apartment, for example. The last time I was there for any period longer than a couple of days, Micah was there! He was supposed to be there temporarily but decided to stay. I’ve been there when my new roommates lived there, but that doesn’t feel like the norm yet. And taking care of myself, doing everything on my own plus going back to working—that feels incredibly intimidating after being taken care of in the hospital for so long. It’s a big day in here if I get to take a shower and do an hour of “exercise”—how am I going to tack on all the time needed to do my treatments, take care of all my meds/sinus rinses, clean equipment, and deal with pharmacies? PLUS work, PLUS exercise, PLUS trying to have a social life? It’s too much. And if that feels like too much, how the hell am I ever going to add anything into my life?
I’m going a little bit crazy in here. I need to just get out and into my life and stop thinking about it.
12/15/15
I never thought I would say this, but I’ve come to love the feeling of being on opioids. It was never part of my treatment but as my chest pain became unbearable I needed it to breathe. With morphine and oxy there’s no pain and no sadness. I don’t take pain meds when I don’t need them, but my pain came back last night for a little bit, and it was not that severe but verging, so I took the smallest dose of oxy. I’m scared of myself a little bit. A lot of the time I feel normal, but then sometimes when I think about things, I’m like, “I want to get some oxy to have on hand just in case I have pain,” which I think is valid, but then I wonder if it were just sitting in my drawer, and if I were having a bad day…I don’t want to put myself in any situation for possible abuse. And I never thought I was at risk before. But now I realize it can really happen to anyone and I need to be careful, and I’m happy the doctors don’t want to send me home with oxy. They say if I have pain that severe, I should come to the ER. It’s a valid point.
12/16/15
Oh Happy Days, I’m getting out—we’re heading home!!!
12/19/15
I’ve started working again this week and it’s nice, it’s bringing my brain back from the dead. The first day was so hard…looking at my notes made me anxious, because I forgot where I was and couldn’t figure out what next step to take. It felt overwhelming. All my information and research were scattered. I wished the interviews I did with Scott Logan and Garrison Frost were already transcribed and started beating myself up for not having transcribed them, and then beating myself up for not having done enough research, not talking to the right people, not knowing enough about plants. But slowly I just got into it, sentence by sentence, and tried to maintain patience. I reminded myself of the central message of Bird by Bird (by Anne Lamott). James Clear sums it up simply: “To become a better writer, you have to write more. Writing reveals the story because you have to write to figure out what you’re writing about. Don’t judge your initial wor
k too harshly because every writer has terrible first drafts.”
Now, it’s my third day working, and I have a good flow going. I don’t know that I’ll finish by the self-imposed deadline of Dec. 30, but as long as I am working every single day toward that goal, I feel okay about it.
Today I had a really nice time with the Sadwick sisters and my cousin Clara. Rebecca and Ari brought their sister Kayla. We went to Fonuts for hours. It was nice to be out of the house. It was a beautiful day; we had pastries and coffee.
The whole time I was getting calls from Coram Home Health*3 because I need a PICC line dressing change and they haven’t been responsive. I called them twice yesterday, Friday, because that was the day I needed it and they promised a nurse would get in touch with me. No nurse called. I called back this morning and told my contact that it was urgent, and I needed the dressing changed today. He said he would call a nurse. A nurse did call, but she said she didn’t have any supplies and that I would need to get supplies from Coram. I had her call Coram to ask. Coram called me back and asked what I needed, and I explained everything. Then another nurse called and we went through it all again. Coram called back yet again to get the exact specifics of what I did and didn’t need. I asked when the supplies would arrive and they said they couldn’t give an exact time (of course; they claim that every single time) but that it would be sometime tonight. I thought everything was settled. I figured the worst thing that might happen would be that I’d have to stay in tonight, waiting for supplies and the nurse.
Then at 1:45, Daniel from Coram calls back and says, we can’t get this for you because you’re no longer on our service. You switched to a different pharmacy so it’s their responsibility; we are not involved and can’t help you. I said that the other pharmacy was not an infusion pharmacy and would not have these supplies and that they’re closed on weekends so I wouldn’t be able to get anything from them for days. He said he would call his manager.
He finally called back and said the manager said no. I asked him if he heard me when I said my local pharmacy was closed on the weekends. He said, well, they agreed to take over, so they need to do this for you. I said, that’s inconsistent because Coram agreed to send me two weeks’ worth of tubing even after I had switched to the local pharmacy, so it was within the manager’s power to say yes. He continued to say no. I said, what you’re telling me is that you don’t give a shit, you’d rather I get an infection and have it go into my blood and threaten my life than get me these goddamn supplies. He said, it’s your local pharmacy’s responsibility. I repeated myself, said they are closed and it’s your fuckup that drove me to them in the first place. He said, there’s nothing we can do, this is my manager’s final decision. I told him to connect me to the manager. He said, there’s no way to contact her except on her personal cell, so I said, give me that then. I said, someone above the person answering the phone is available today and you need to connect me. He said no. I asked him to give me his full name and the full name of his manager and said my dad would call them and that I was a LOT nicer than my dad would be. He put me on hold for ten minutes before I finally hung up. I was shaking.
During this conversation I asked him if he was aware that he worked for a healthcare company. I told him his company was responsible for jeopardizing my health due to false promises and failure to follow through on them. It’s outrageous that they didn’t tell me thirty hours prior, the first time I called about my dressing change, that they couldn’t help me.
I started out nice. I could have started by being accusatory and demanding but I wasn’t. I told him his company had screwed up badly and driven me to another pharmacy, but that I was not going to take my anger out on him. But then he turned out to be just another one of those assholes. I finally paged the doctor at UCLA so that the on-call hospitalist could write new orders to Coram or another infusion pharmacy to get me supplies today. But right after I spoke to the doctor, the first nurse from the morning called back and told me she had the supplies. I was relieved, but also pissed because she could have told me that five hours earlier and saved me so much stress, anger, and time wasted on the phone, yelling at an idiot who was never going to be convinced that my life was more important than his manager’s indifference and laziness.
I wish I could testify against them in court. I wish I could explain in detail every single mistake they’ve made and every single way they’ve made my life ten times more complicated than it needs to be. I wish I could just check back into the hospital (not really, but right now I do) because then I wouldn’t have to fight every minute of every day for what I need. It’s devastating, criminal in fact. And a reminder that they shouldn’t discharge patients from the hospital until home healthcare is worked out perfectly. Staying in the hospital another day would be a small price to pay to avoid this deep distress.
12/25/15
No progress so far on the New Year’s resolutions, or even productive reflections about this year and what went well, what went wrong. Going to try an internal dialogue, but I’m setting my expectations very low.
Why do I write New Year’s resolutions?
Because I want to stop feeling aimless. I want to take control over my life and actually determine where I’m going. I want to feel consistently happy again. I need to search the deepest trenches of my soul to figure out how to get there. Maybe going back to the concept of a North Star would be more useful than New Year’s resolutions since resolutions seem to emphasize achievements rather than habits and processes. Like the destination, rather than the journey…?
Gonna try that. My North Stars are:
Happiness
Meaning
Productive work
Strong relationships that nourish, not deplete
Community
Routines that ground and energize me
Self-assuredness, mental health
Health (Maybe this shouldn’t be a North Star, since it’s not my choice whether I’m healthy or sick? Have to think about this one.)
Treatment compliance
Exercise
Nutrition
Sleep
Youth, Spontaneity, and Adventure (lacking in this department, must balance this with health)
Friends
Family
A better metaphor for this than North Star might be pillars. Pillars that would make my life good.
2016
1/2/16
I had a great New Year’s Eve and a great New Year’s Day. I went to a pregame party with a bunch of people I haven’t seen in a long time, then to the Snapchat party downtown. It was like a big Stanford reunion crossed with a ritzy bar mitzvah, and Foster the People played. It was nice to feel like a normal person. But it also reminded me how much of my life and myself I’ve lost recently, because people would ask me how I’ve been, what I’ve been up to, and I either had to lie or just be really vague so I wouldn’t be a downer. One guy mentioned that he’s seen on Facebook that I’ve been in and out of the hospital a lot and I was so awkward in my response. I was just like, “Yeah, it’s been tough but it will be okay.”
But it was great to hang out, doing what I should be doing at twenty-three. At the actual party I realized how much of a grandma I am (not that I didn’t already know). It was nice to mingle but after a certain amount of time, the venue was too loud and too crowded, and I felt claustrophobic. I was tired and I wanted to go home. I left at 11:50. It was a great night, though.
Unfortunately, I didn’t fall asleep until 4:00 a.m., so I couldn’t get up at 8:00 a.m. the next morning to be ready to drive to the Rose Bowl with friends. I went later with my parents, and Linda and Steve. When we got there, we went to the alumni tailgate, so we saw a bunch of people, ate food, etc. It was fun and warm. Best part of the day!
Stanford demolished Iowa so it wasn’t the most exciting game but I don’t get football anyway. I wa
s just extremely happy to be there and so grateful to be out of the hospital. It was a beautiful day and I can understand now why some people choose to live in Pasadena. Middle of winter and it was a gorgeous, clear day, and so green, with mountains on all sides.
We left with four minutes on the clock. I was exhausted and slept twelve hours that night.
The next day was not good. I started coughing up blood and it was a much bigger bleed than usual (30 ccs), causing me to vomit a bunch of times. I was sitting in the bathroom on the edge of the tub, alternating between coughing blood into a cup and then vomiting into the toilet. It was quite a sight. At that moment, I was filled with an overwhelming sense of hopelessness.
When I coughed another 20 to 25 ccs of blood that night, we knew to go to the ER.
All things considered, it was a smooth ER trip that ended with an admission. But I was an emotional mess. I gave Kona a big hug before I left but wished he could come with me.
1/5/16
Still in the hospital. My head hurts and my body is heavy with stress. At midnight I coughed up 10 ccs of blood, then 50 ccs, 70 ccs. They moved me to the ICU and ordered a CT scan.
1/9/16
Life in the ICU is a whole different world. The toilet in the middle of the room with no walls around it strips me of my dignity and, combined with my multiple meds that cause constipation, it’s impossible to have a bowel movement. When I first got moved back to intermediate ICU on Thursday afternoon, I was ready to kiss the ground of my familiar room 5498. I was relieved, and it felt like the first moment in days that I could take a deep, non-agitated breath.
I can’t believe Melissa spent eighty days in the ICU at Stanford. How did she suffer through that for so long? Two days or so in there changed me. Michelle commented that she could tell I was pissed at one of the nurses. I was surprised. I said, I’m not pissed at her, what made you think that? And she said, you’re normally so sweet to the nurses but this time I could see your irritation on your face.
Salt in My Soul Page 14