Salt in My Soul Read online

  Best,

  ***

  To:<—@stanford.edu>

  Sent: Wednesday, March 14, 2012 2:34 AM

  I don’t mean to offend you, and maybe I am just not understanding why there is absolutely NO way for me to finish the class this quarter, but I find it borderline discriminatory that I may be prevented from taking language classes ever again at Stanford because of this attendance policy. At the beginning of each quarter, when I sign up for classes, I cannot predict what health hurdles will come my way—I don’t know how often I will be spending nights in the ER, how many days I will be in the hospital, or how many appointments I will need to schedule with doctors who have hundreds of patients and can’t accommodate my class schedule in their scheduling. Since it seems that there is no way for you to bend the rules in this extenuating circumstance, the implication is that I cannot take language classes at this school. At this point, I believe it would be very detrimental to my health next quarter to have lingering responsibilities from this quarter. I am inclined to say that maybe I should just take the fail in the class if my only options are a fail or an incomplete. I’ve never faced an attendance policy that was absolutely unable to be modified in any circumstance. I don’t think we need to meet on Friday just for you to tell me that I can only get an incomplete, so I’m just going to think about what to do and then get back to you.

  ***

  From: “Diane Shader Smith”

  To: “Mallory Beatrice Smith”

  Sent: Wednesday, March 14, 2012 6:00:52 AM

  XXX is only a lecturer, not the dean or a higher up. You’re protected from this discrimination by the Americans with Disabilities Act. I will find language that you can send to them. In the meantime you should email the CF team for documentation about your hospitalizations. xo

  ***

  It all worked! Issue resolved. They agreed not to count my missed days, so I passed the class!

  4/30/12

  My PICC line is the emblem of the chains holding me back, a burning, unyielding reminder of the losses of my present and the uncertainties of my future. Not a minute of respite or peaceful freedom can be won until I’m released from the tethering leash that holds me hostage within a life restricted, a cage that feels far too small.

  5/29/12

  I dream that one day CF will stand for Cure Found. I dream that one day breathing will become so easy that I could take it for granted, although I never will.

  6/7/12

  Want to apply for a CF merit grant. Need to list my accomplishments at Stanford to date:

  Outreach chair—Health Advocacy Program

  Research assistant—Stanford Food Project

  Member—Students for Sustainable Stanford

  Member—Appetite for Change

  What I care about: raising awareness about the environment and ethical and health issues associated with meat consumption and the food industry. Specifically, the intersection between human societies and the environment, and sustainable development and agriculture.

  6/25/12

  Finally figured out that I wanted to plan for a career in sustainable development of developing countries and applied for/was accepted into a program to work in a remote town in Ecuador. But with my unrelenting pneumonia, invasive fungal infection, hemoptysis, ABPA, gallstones, and a pulmonary embolism, my doctors immediately nixed the plan.

  I was devastated. While I moped, my mom, in classic form, swooped in and figured out a plan B better than my plan A—a nine-week environmental documentary filmmaking program at UC Santa Barbara called “Blue Horizons.” The application was intense but now I’m in S.B.!

  Got here yesterday in time for my orientation, then moved into my housing. My housemates are really nice! Need to decorate my room since it’s pretty barren. Excited for this program but nervous about the time commitment, the workload, getting enough sleep, treatment and exercise.

  6/27/12

  Today we had a field trip to Coal Oil Point Reserve, a nature reserve near campus. I walked over with Ashley who is super nice, and we decided to do the documentary project together. We were scheming about who else we wanted to work with and decided on Spencer and Nick. Today we approached Nick on the hike through the reserve. He said he was down to be in our group, so now we just have to ask Spencer. It’s amazing how much information the program has covered in three days. Finally got into the ocean! First time since I came to Santa Barbara…

  6/30/12

  The long hours and group work make me feel close to the people in the program even though I’ve only known them for six days. It’s amazing to me that one week ago I didn’t know one person in Santa Barbara and now I feel connected to Ashley, Nick, and Spencer!

  We had a camera-handling workshop from 10:00 to 2:00. INTERESTING!

  7/2/12

  GOOD THINGS THAT HAPPENED TODAY:

  1. Turned in my rental camera equipment—had been worried about forgetting or oversleeping

  2. Took a nap, went to yoga at S.B. yoga center again, made it to CVS for meds

  3. Came up with cool idea for video pitch to send to pharmaceutical companies about handling life as a young adult with CF—things the docs don’t tell you—and use Blue Horizons equipment to shoot footage that I can use later

  4. Ate really delicious and healthy breakfast: nonfat Greek yogurt with dried cherries, chia seeds, sunflower seeds, organic wildflower honey, raspberries and blueberries, and blonde roast Starbucks coffee

  5. Matt (a housemate) invited me to play beach volleyball tomorrow afternoon, which should be fun if I can still play after not playing for so long and feeling out of shape

  BAD/MEH THINGS THAT HAPPENED TODAY:

  1. Zoned out for a half hour of our three-hour Final Cut Pro workshop

  2. Had really bad period cramps and stomach issues today, drank Cathy’s PMS relief herbs. They have mugwort in them haha

  3. Didn’t sleep enough last night so really exhausted all day

  7/26/12

  Went to clinic today. My IgE went from 700 to 569 (so much better than the high of 2,400 last December), my liver enzymes are continuing to drop toward normal range, my blood sugar is good, so no diabetes. The bad news is that my heart rate continues to be higher than normal and I’m more short of breath/my energy is still lower than it should be. White count is also elevated, which confirms my suspicions that what’s going on is increased infection, leading to more mucus clogging, difficulty breathing, low energy, high heart rate, etc. I’m just fucking pissed about it because I only got off of IVs six weeks ago, and I started feeling this new infection, whatever is going on now, about two weeks ago; that means I had four weeks of freedom, and that doesn’t seem fair. I don’t know what I’m doing wrong, and I don’t want to talk to my mom about it because she will say that I need to slow down, to do less, etc., but I can’t right now. I’m not a perfectionist or an overachiever but I just can’t right now.

  When I’m healthy, IT’S A BEAUTIFUL THING, and I feel like I’m capable of anything: I’m motivated, happy, spontaneous, energetic, and fun. When I’m sick, I’m none of those things. If I lived my life like a sick person, always limiting what I think I’m capable of and limiting what I do so that I never get sick, then I would have all the negative consequences of being sick in addition to the physical feeling of it. I just don’t know what to do and it’s stressing me out and making me sad and I can foresee my future self absolutely hating me, screaming, “Why the fuck did you care about this whale movie so much? The rest of the group could have picked up your slack!!” But I can’t explain why I can’t NOT do what I came here to do. It’s REALLY stressful making a film and taking it way too seriously.

  8/22/12

  Silver Bullet turned out to be a great film but so much drama in our group when we were finishing. I am proud of it but the shit storm a
t the end probably compromised my health. It sucks but I really loved the program and learned so much. Sad to have it end.

  8/29/12

  I was chosen to be a Peer Health Educator (PHE) in Cedro dorm, a job I really wanted but wasn’t sure I’d be healthy enough to do! We’re responsible for the health and wellness of the freshmen in our dorm, but people joke that the real job is to pass out condoms.

  9/16/12

  Turns out the stress of balancing the PHE job with my health needs feels like an infection in its own right, wreaking havoc on my physical and emotional health. In the first few days certain coworkers did not understand the severity of my condition and seemed to feel that I was trying to shirk my work responsibilities. They had no idea what my life is like. But our dynamic became instantly better after I sent a long, heartfelt email explaining.

  9/18/12

  I’m back in the hospital thinking about what I want:

  I want to wake up in the morning and take a deep, full breath.

  I want that breath to fill me up, to imbue me with joy and energy, not to irritate or pain me and set off a spasm of coughing.

  I want to be able to do the things that I dream of while I sleep, things that are taxing in reality: hiking, running, biking, swimming, diving, kicking, screaming, dancing, laughing, jumping, falling, leaping, soaring….

  I want to get to know another person without fearing what they will think when they truly understand the way my body works.

  I want to trust that my body will be able to help me, not hinder me, in living out my dreams.

  I want to know that when my closest friends are sitting on the porch at age eighty, I’ll be sitting there with them, reminiscing, smiling, weeping, talking, drifting, chuckling.

  I want to fall in love and have a relationship that’s reciprocal, and not have to burden my love with the task of taking care of a spouse who can’t pull her own weight, who’s needy.

  I want to have a child, but more than that, I want to hope to have a child without the nagging worry that the dream is entirely foolish. And when I have this child, I want to be able to pick her up, carry her around, chase after her in the playground, climb trees with her, play with her in the jungle gym, teach her how to swim, dance with her in the kitchen, show her the most beautiful hikes, be there to push her into her first wave, keep up with her fireball energy of youth.

  I want to effect change in the world. I want my life goals not to end at solely surviving.

  I want to live largely, richly, vastly, dynamically, lovingly, graciously, eternally, and ephemerally.

  I want to feel amazement and wonder, every day.

  I want to never lose sight of my place in the thread of humanity, in the fabric of the earth, in the palace that is this universe.

  I want friendship, happiness, humor, laughter, lightheartedness, small conquerable worries.

  To want these things is normal; to expect them is dangerous.

  Do I have to abandon my beautiful idea of what life is? Do I have to abandon these fantasies as possibilities for me, to refashion my idea of the future, to settle for just surviving, breath by breath, one day at a time, sacrificing the very idea of dreams to prevent disappointment?

  Only if I allow disappointment to crush my spirit.

  I am happy today.

  10/19/12

  Things have been going better for me. I’m on top of my shit and having fun. But I did have a moment of realization that I don’t want to do my major anymore. Maybe it was a temporary freak-out but I used to envision doing environmental work in the field outside all day and working with people, doing photography or filmmaking or research or education or outreach or whatever. Now I just see those careers being too physically hard and since I can’t know what I’ll be capable of in the future, it seems silly to plan for a career that might not work for me. What led me to study the environment in the first place might never be feasible and I don’t want to end up doing physically easy things like administration, office work, etc.

  2013

  2/17/13

  The tournament at Davis was so fun! I got to see Michelle and play lots of volleyball. And drive home with Karen with the music blasting! Saturday night my mom treated our team to dinner at the Spaghetti Factory, and even though I ate to the point of feeling physically ill half the night, it was great.

  Everyone was grateful that my mom paid for dinner, but it makes me feel ashamed about the fact that I couldn’t go to these tournaments and do okay without her. I guess ashamed isn’t the right word. Embarrassed? No. It’s not really about admitting to other people that I need her, it’s about admitting it to myself. I don’t really know what I’m saying. I’m happy she comes, it allows me to play, but I wish I had the luxury of being like the other girls on the team whose parents can just show up during the daytime to watch them play every so often, instead of needing a parent to fly up north, drive up with me in advance, stay in the room with me, pack for me, clean my gear for me, get me breakfast, watch me all day and get me food and drinks, pay for dinner so she can justify coming with the team. I hate feeling so dependent, but I am.

  3/20/13

  It’s funny how over the years my wishes have evolved, like what I say in my head when my eyes are closed and I’m blowing out the candles, or when I’m in the passenger seat of a car driving through a tunnel, or when I see a shooting star. When I was young I wished for specific things: for someone to have a crush on me, to get to go on a trip, to receive something material that I wanted, to win the respect of a coach and earn a starting spot, etc. Then I would just wish to be healthy, nice and simple. Then it was, “I wish to be healthy and happy.” The second half was added on because that was starting to feel unobtainable. Now, it’s just, “I wish to be happy.” The most achievable of all, something I used to wake up feeling and take for granted. Now I know that at the most basic level, I need to be happy or I’ll never be healthy, mentally or physically.

  5/12/13

  Today was a really lovely day!

  Yesterday, after I got my PICC line out, I wanted to go swimming but wasn’t allowed to get my arm wet yet, so I walked the “Dish” at Stanford with Pidge and Uncle Danny. Was nice to spend time with them but I couldn’t do the full hike; the heat was killing me more than the workout itself, and I felt very faint and unwell. So, I left them to find someplace to sit and ended up at Tresidder*8 because I wanted shade and comfort.

  Then last night was the Relay for Life. We got there during the opening ceremony and watched the video slideshow in honor of cancer patients. It was SO sad. During the third performance I was bawling as I listened to a sophomore talk about her best friend at Stanford who got diagnosed with brain cancer spring quarter freshman year and died winter quarter of sophomore year. I just couldn’t imagine the absolute devastation and despair that everyone who knew her must have felt, what her family must have felt, how she felt when she got the diagnosis. I was imagining these things and it made me feel so hollow, but also so appreciative of my situation, that I have time. But it also made me think about what it would be like if I died, how someone could be standing on a stage at some point, with a candle, talking about what it was like to lose me.

  And I thought about what my family would be without me, how there would just be this void, and how they’ve all worked so hard and given up so much for me, how I’m an attention-sucking person because my parents have to sacrifice so much time to make sure that I’m okay, and how they do it in a heartbeat, instinctively, without any second-guessing or hesitation. And if I died, all that effort would just be…there’s no word for it. They’ve poured heart and soul, every single bit of emotion they have into keeping me alive, and if I died, all that would die with me. I think my family would feel dead, not forever, they might come back, but it makes me heartsick to think about what I would leave behind if I passed on.

  After the ceremony w
as over there was a silent walk around the track. The whole experience was very emotional. I felt this wave of gratitude at the beauty and magnitude of the human experience, that I get to live; and I felt frustration with myself for so often getting bogged down in the silliest things.

  Today I went for a swim at Oak Creek—it was sunny and beautiful, the pool was the perfect temperature, there were a bunch of adorable babies and children, I was able to get some exercise, and SWIM for the first time in weeks! It’s always the best way to celebrate getting the PICC line out…and it always feels like the very essence of freedom.

  11/13/13

  I am in Hawaii! Long story short, I was sick last week. First Sabrina got sick, then I started feeling feverish and fatigued, then my stomach got fucked up, and by Wednesday I felt like I was in the middle of a full-blown exacerbation. Crazy how it happens so quickly.

  My mom arrived on Tuesday. It ended up being really good timing that she was there while I was sick. I scheduled an appt to go to clinic on Friday, my PFTs were at 42 percent again, down from 52 percent. That’s a pretty significant drop, but I wasn’t really surprised, because I was so short of breath I could barely even bike to class.

  Their strategy for people in my category of health seems to be that when we say we’re not feeling well and schedule a clinic appt outside of a regular checkup, we should be admitted, because it’s based 99 percent on our stated symptoms and how we feel, not on PFTs or white blood count or anything. Whereas when I was healthier, and I didn’t feel that big of a difference between a lung function of 75 percent and 65 percent, they would have to force me to be admitted and I would never choose it voluntarily. But I really did not want to be admitted, I was kind of hoping they would suggest to just watch it, maybe start an oral or something.