Singing you Away

So, at long last I have finished my master's thesis. It was entitled "Singing You Away:An Examination of Community and Self Discovery through Illness Narrative," and, for the most part, it was about all of YOU. Well, "YOU" being the generalized CF community that actually reads this blog. In honor of YOU, I decided to share a few blurbs here with YOU. The piece is going to be published by the University library as I think is the case with most Master's Theses (thesises)(?) (sp) and I am going to try to work it into a book length piece for publication. (so in other words, this shit is copyrighted, yo).

All I can say is thanks, because without YOU this piece would have never come to be. Chances are I'd still be writing about Edith Wharton. Not that that's not OK too, but this was more fun.

This is from the "context essay" - the academic part of my project:


"For most of my life I’ve had trouble revealing to people that I have the disease Cystic Fibrosis (CF). To any more than family, close friends, or medical staff, I’ve allowed the disease to remain tucked away inside of me, a secret I’ve been ashamed and embarrassed to admit. Even to those who knew about the disease, it was often unspoken; I only revealed my medical history if it was pertinent to the situation at hand. I denied that part of myself and hid it from others as well. Despite harboring the secret of my disease, I still often felt I had a story to tell. The hiding of the secret was, in fact, the story. I wanted to write a personal narrative which explained how, with the help of friends I made in the online Cystic Fibrosis community, I was able to release much of the embarrassment I felt surrounding my disease and accept that the illness was not a shameful secret, but rather just another part of who I am, no different from the color of my eyes or status of my belly button. The purpose of this essay is to find a place for my personal narrative, “Singing You Away,” within the academic conversation on illness narratives. I used two key terms from Arthur Frank’s work: the “cumulative epiphany” (Rhetoric 46), which is a narrative form in which the author comes to understand that the illness has always been a part of who he or she is, and the “dyadic body” (Wounded 35), a word Frank uses to refer to the shared experience of being bodies, in this case bodies who are afflicted with some kind of illness. I will examine these concepts later and refer to them throughout this essay as a means to examine the development and analysis of my personal narrative from a more theoretical perspective. Using these two concepts, I demonstrate how my narrative describes the development of my identity as a person with a disease and how, once I was able to accept that part of myself (particularly with the help of my online friends), I was able to use the medium of narrative to reveal my secret and assimilate the disease into my identity."

"I set the narrative up in short vignettes that pick out specific moments in my life that I felt could best shape the story. My aim was to show how I was born with this disease, rebelled against the life and medical prognosis that comes with a disease such as Cystic Fibrosis, and finally found some kind of peace with myself and the disease through the interactions I had online with other people who also had CF. These online interactions later play a large role in the way I hope to enter my voice into the genre of illness narrative, showing through my personal narrative the way that the internet changes the overall concept of illness writing. Narratives are now being written in real time, updated and changing daily through blogs and social networks as people update continually and interact with others as the disease is happening to them. Through these networks and friendships my personal narrative was shaped. These relationships helped to form my identity as a self with disease because as I read the continuing and ongoing stories of others with my same disease I could relate to them in a way that was not available to me at any other time in my life, either because I rejected it, or because the cross contamination risks of the disease were too great to take the chance of meeting in any other way than in a virtual reality. The relationships served as a mirror of sorts whereby I could compare my disease and myself to others with the same disease and examine how others dealt with their illness and disability, constantly comparing and contrasting that to my own reactions and experiences"

"The idea that life was to be shortened by CF has been a lingering stigma for my entire existence and was a motivating force in my narrative. I wanted to give voice to the deviation my story took as I struggled against this prognostication. I rebelled against the prognosis of CF long before CF made much of an appearance in my life’s narrative. I was rebelling against this “failed prognostication” that had shadowed me for years. In this memoir I’ve presented drug abuse as the primary mode that gave shape to that rebellion. Certainly substance abuse was not the only way I rebelled against my disease, but it is a serious way, and it is an intriguing way given the dire importance good health has in our society, especially when one has a life-shortening disease. Substance abuse is certainly not an issue of childhood and the fact that I was able to get to a point in life with this disease to be able to abuse narcotics is a rebellion of sorts against the disease and the prognostication of where that disease would take me. I should never have been healthy enough to even think about such a lifestyle. I did, however, and then even lived long enough to be able to look back on that time of life and put it to paper. This narrative itself is still a form of rebellion against the prognostication of medicine and society on the illness itself."

This next part is from the personal narrativepart of the project,or the "creative aspect." This is revealing more about me than I probably have to some of you - to others, you know all about this stuff cause you lived this life too. I hope the reader won't judge me too harshly based on how I acted 16 years ago. I am editing slighty, you know, just in case.

1995
She takes a swing and she can’t hit, she don’t mean no harm, she just don’t know what else to do about it
By my senior year of high school I had a handful of friends who had their own places. Bald Jay’s was next to a roachy pizza place on a street infested with hookers, winos, and other denizens of the smarmy South Bend street life. I’m amazed with our bravado in those days. Walking down streets not meant for suburban white girls, preening for the men who cat called, asking for drugs, going into the homes and cars of strangers to get them. I can’t believe we were never hurt; I think of how many ways we were hurt: taken advantage of, exploited, used.

I met Seth eight months after I’d decided to become a born-again virgin. I’d begun to grow weary of the meaninglessness in my interactions with boys. I was seventeen, heading soon for college. I wanted a fresh start; I wanted love. I had succeeded in creating a persona of wild,bad girl, but I started to envy my friends who had boyfriends who bought them flowers and took them on dates. I had visions of a relationship like the romance between Lloyd Dobler and Diane in "Say Anything," of Romeo and Juliet.

That last summer before college, my girlfriends and I had plans to follow the Grateful Dead. We wore second-hand clothes and ate lots of acid. My hair fell to my waist. I carried a one-hitter and a camera in a straw tote bag. I stopped shaving my legs. We were eighteen and free. It was the summer of my first true love.

I remembered Seth from high school. He had twirly eyes, like a cartoon character. I would see those kind of eyes only one time more in my life, in the eyes of a meth head in New Mexico, ironically also named Seth, who wanted a ride. The eyes would scare me. Seth’s eyes scared me. I’d heard the rumors: they all said he was wild. I’d never really paid him much attention until one summer evening at Bald Jay’s.

Like most teenagers’ first apartments, Bald Jay’s was sparsely furnished, the sink always full of dirty dishes. Band posters were tacked about the walls and the company was transient. People who weren’t even really friends with Jay would come by, his house one of the few to hang out in where there were no parents present. Erica and Lola, my closest friends, and I were frequent visitors, being friends with both Bald Jay and one of his roommates. We’d flounce into Jay’s unannounced in our gauzy skirts and sprawl across his couch assuming that our presence was always a welcome addition.

One night Seth slinked into the house and fell into a threadbare chair across from me. His energy was like honey, syrupy sweet. His hair was a tangle of auburn curls. He was shirtless, his chest flat and hard, bare. His army pants were pulled so low that the V of his pelvis was exposed, soft auburn curls peeking from the waistband. He rolled a joint, meticulously folding in the corners of the onion skin paper to make little pockets, then tapping out a sprinkling of cocaine from a magazine folded bindle he kept in the cellophane of his cigarette packet. I wasn’t even sure if he was aware that I was there. We all smoked: Seth and his friend Jake, Bald Jay, Lola, Erica, and I. We passed the joint from fingertip to fingertip, the raucous vibrations of Phish’s “Run like an Antelope” wafting from an upstairs bedroom, the windows open to the humid summer air and the rattling mufflers and loud voices of the downtown street life.

Soon after, Lola, Erica, and I went for a walk on the East Race, a pleasant boardwalk area built around the St. Joseph river. Our gypsy chains jingled, our patchouli drenched skin was soft in the lamplight as we discussed Seth and the cocaine laced joint and whether or not we thought we felt any different from it.

I decided to call Seth “Jim Morrison” in code because of a picture I’d had of the singer on my bedroom wall with the same wild wavy hair and low riding pants. I recruited Erica to help me track him down the next day. We found him on Van Buren Street, in the heart of run down South Bend, lying on a mattress in our friend Ray’s bedroom, smoking a joint. The four of us drove to Rum Village, a park and nature preserve on the southwest side of town, where we swung on the swings and smoked a joint in the woods. Seth massaged my shoulders from the backseat of my car as I drove us back to Ray’s and asked me to come over and go in his hot tub that night. I agreed and snuck out of my house via the sliding glass deck door to meet him at the end of my driveway. He picked me up in his white Honda Civic, a cigarette in hand, Jane’s Addiction on the tape player. My legs glimmered, slathered in the smoothness of Bath and Body works liquid talc....

It was an intense summer. We watched Perry Ferrell shoot up and pretend to be Dr. Rockstar in The Gift. Seth wore my dresses and let me put make-up on him. We had sex in the car, behind a church, in my mother’s house and his father’s, in the woods, in bathrooms. We took Xanax and drank microbrewed beer. We played pool and went to the beach. I was in love. Then he kissed a girl named Vanessa in his hot tub. And the boy I should have let go, of moral failing and intense addiction, I began to cling to even harder. I sobbed the night before I left for college and ate three of my mother’s Xanax bars. My heart was breaking.

When I got to college, still dating Seth long distance, I stopped smoking pot and started taking aerobics. I had the realization that no one was going to look after my health except me. I still drank, took hallucinogens, and did cocaine when we could find it, but I had this grand idea about saving my lungs. I didn’t tell anyone why, I just told them I was “allergic” to marijuana. This was an acceptable answer.

I hung out with hippies, bike thieves, druggies. Of all the people I was friends with in college, only a handful ever finished. Of those who did find success, many took the same roundabout path that I found myself on. The lure of Phish music and freedom was so enticing that working the midnight shift at the BP didn’t seem like a bad gig if it meant you could get all fucked up after and have no responsibility in between. I envied those people. Though I dallied in these fringe groups, I still felt a great deal of pressure to succeed both from my family and intrinsically. I was not going to fail at anything. So I compartmentalized. I could be smart; I could make Dean’s list and still stay up all night on cocaine. I further compartmentalized my CF. I’d left behind most of the people who’d known about it from my childhood, and told fewer and fewer people. I didn’t even tell my college roommate, Maria. Despite being friends in high school, it was several months into living together that one day she noticed me taking medicine before eating and asked me about it. I had no choice except between lying and telling the truth. I opted for the truth. I was embarrassed and played it off as nothing to worry about. I don’t remember telling her about the life expectancy, though I know I often threw that number in, especially as I got older and surpassed it, as a means to prove how unaffected I really was by the disease. A few years later I recall asking Maria about that day and what it was like to live with me during those years.

“Yeah, I do remember when you first told me that you had CF. It was at the very beginning of living in the dorms at BSU. Ryne and I were both there. I think the reason it came up was not about coughing, but as a way to explain why you were taking pills before eating. It was the first time I had ever even heard of CF,” she recalled as we mulled over a bottle of wine.

“I’m sure you told us all about it medically and stuff, but the part I remember most was you saying that most people don't live past 16, which sort of freaked me out. I had never really dealt with the mortality of a close friend. Eighteen is quite an invincible time for most.

“I remember after knowing, feeling protective of you when you would cough... I remember feeling pissed at people who would be like ‘Whoa dude, are you okay!?’ Or, ‘Damn girl, have another cigarette!’ Shit like that, but I would use my lack of concern to try and show them that they were dumb for asking: they should do the same. Looking back, I guess they weren't assholes, just concerned, but I felt sensitive to what I viewed as tactlessness and sort of a MYOB situation.”

Despite not smoking and exercising, two purposeful choices aimed at taking better care of my lung health, I still lived hard. College is a rough time for many coeds; binge drinking and crappy eating are commonplace, and I was no different. I was also warped into an increasingly codependent first love, something akin to a toddler in a Christmas tree shop: excitement, bright lights, and inevitable shattered glass.

Spring semester, Seth followed me to BSU and lived in the same residence hall on the floor below me. We spent most our nights in one another’s rooms. He peed in an empty two liter the nights he spent with me; I lined his trashcan with a plastic bag the nights I spent with him. Though I was modest around his roommate, Maria, Seth, and I were all comfortable with one another and often the three of us slept nude, Maria in her bed, Seth and I crammed into mine talking late into the night. There was something uninhibited about being so uninhibited and I found us all quite bohemian.
I wrote Seth’s papers for him, he rode me to class on the front of his bicycle. For spring break we headed to the Gila Mountains of New Mexico and the peaks of Breckenridge, Colorado with a slight detour to Palomas, Mexico to purchase and smuggle in valium. We both fell in love with the Southwest and vowed to return.
Jealousy had slyly sunk its fangs in our young love over the course of our time together. Less than a year into the relationship we’d both cheated on one another; it’s hard even now to understand why we continued to hang onto each other so fiercely. There was a sexual possession between us that I had never felt before and I wanted no other woman to have my man. It didn’t occur to me then that I wasn’t holding Seth responsible for his transgressions....

Seth transferred to the University of New Mexico the next semester. He and I visited one another each month after he left, once each driving ten hours to meet in Oklahoma for the weekend. I began the paperwork to take out loans to transfer to the University of New Mexico that spring. My parents were vehemently against the idea, Seth becoming nothing more to them than an impediment to my future successes. They truly feared that I would elope or become pregnant by him and bind myself to him even more fully than I already had.

My father, Seth, and I packed up my Toyota Corolla in January of 1997 and drove through the worst snowstorm the southwest had seen in years from Indiana to Albuquerque. My father had succumbed to the fact that he was helpless against me leaving, but he’d at least get me there safely.

The temperature was in the negatives as we drove through the Midwest. Not far out of Indiana we suffered a tear in the sidewall of the tire. Seth and I stood helplessly aside as my father unpacked the entire trunk of the car and attached the spare with his bare and frozen hands. The blowing snow and slippery conditions of the roads as we headed farther south convinced my father that only he should drive and we listened to him lament, “This isn’t good, this isn’t any fucking good” as he inched the car along the Texas highway.

New Mexico quickly became an exercise in addiction. My grades dropped to B’s. Retrospectively, this should have been a warning sign to my parents that something had gone amiss, but a B was still an acceptable grade and no one worried much. The truth was Seth and I spent some days awake on cocaine and some days in a groggy stupor of heroin. My resolve to help him with his addictions dissolved hours after I put my father on a plane back to Indiana.

We made friends with another couple and they were among the first new people I told that I had CF in years. I had no other answer but the truth for why I coughed so incessantly sometimes. Cocaine constricts the nasal passages and some nights the post-nasal drip would cause me to cough and gag without end. As with Maria, Seth was protective of me when someone joked about my coughing. He may have been the one who told them, in all actuality, as a response to some joke such as, “Maybe you need to see a doctor for that cough?”

“What does it taste like?” asked one of the friends. “Is it like when you have a cold?” I had no answer, my sputum always tasted the same; in effect, I always had a cold. I realized that their curiosity wasn’t a bad thing, it wasn’t a force of pity but rather a simple desire to understand. Talking was much easier with the fuel of drug-induced stimulation.

I knew that New Mexico wasn’t a healthy place for me to be. I never saw a doctor when I was there, I did not exercise, I was not eating well. I was clearly abusing drugs. The little cricket voice of my subconscious also knew that starting out my life with thousands of dollars of student loans wasn’t as good an idea as going home and letting my parents pay for my education. Seth scared me as his addiction spiraled farther and farther out of control and I was grasping at twigs trying not to follow him down. It was still important that I remain above water with my school work. The final straw was twofold: a worried phone call from my grandparents one week after we’d unplugged the phone and stayed in bed on a heroin binge, and a family trip to France that was held above me like a carrot on a stick: come home and you can go with us. My choice was made. After one semester and thousands of dollars, I was going back home."

No more drowning in my sorrow, no more drowning in my fright

I've always had sort of this wierd obession with death. I'm sure that sounds bizarre to a lot of people...though maybe not so much the readers of this blog. But as long as I can remember, I've felt connected to death. I don't know that I have the time to properly put that into words. But here is an example: I like funerals. Not in some wierd morbid Lydia Deetz kind of way, I don't like death because I like it when people die, but I am attracted to death in how it strips people of all their bullshit. Layers come off in death. Grief is a raw emotion. It isn't that it isn't tragic, I don't want to make light of the losses people suffer in death, especially to a readership of primarily lung diseased young adults, but people seem most "real" to me in their saddness.

One of the problems i have always had in this life is this pervading sense of loneliness. As I've gotten older, I have often attributed it to Cf and the isolation I felt in the disease for so many years, but even now that I am not as isolated because of my internet connections, the lonley bug still hits. It isn't always lonley in a bad way, it's more a trouble connecting with the world. I once wrote:
How do you explain lonely? You have to slow down to do it. I don’t think lonely people ever move fast, that’s part of the problem. You can’t keep up so you give up trying. It’s the way you can be in the middle of a group of people, but you’re the only one trying to hear the background music.

I feel like I can't connect with the world because so many people seem so full of shit. Sometimes I feel like it is clear as day how people are hiding from themselves. You hear them talking but it's almost like "Annie Hall." You can see the meta-thinking inside thier brains, excpet it seems like THEY have no idea. I realize this is already riding the edges of not making sense. I always default to my old standard, you just have to "get it."

But I am not afraid ot talk about death, I am not afraid to cry. And I feel this connection to saddness and grief. I think maybe, besides the losses of people I've loved, I have always held onto this slight sense of grief for myself.

Yesterday my stepmother and the hospital she works with hosted a "Grieving Out Loud" seminar given my a singer named Cindy Bullens. I hadn't heard of her until my stepmom started listening to her after the death of my stepsister. I wasn't all that drawn to the music either, mostly because it just isn't really my style. the workshop was differnt though, it was the story behind the music.

Bullens lost her 11 year old daughter to Hodgkins disease and from that loss came an album called "Somewhere Between Heaven and Earth" and from that came this workshop on grief, which really isn't a workshop at all but just Bullens' story.

At these types of events, you get all types of people: those who just want to be seen, those who truly want to learn, those that come for the free food. I stood rather silently at the reception/hors d'ouerves prior to the workshop just taking people in, watching, doing my alone buisness (part of lonley is my hatred of small talk, if we don't get to the meat of it right quick, I don't want it).

Bullens dips right into the meat of things with her presentation, immediately taking you into her grief in losing her daughter. Coupled with her music, the experience was intense. And that is why i feel an affinity to death. The room was connected, we were sharing our pain. Not everyone there had lost a child. My thoughts strayed from my stepsister Kelly and my stepmother's experience in losing a child, to Paul and the way his death took me to my knees in a way I'd not expected, to the horror of losing my own children, to the fear I think my parents must encounter when they think of losing me.

But it is fear that holds us back, keeps us quiet, trips up our dreams. So when death bubbles that fear up to our surfaces I think we forget about all the other things we are afraid of. So funerals and shared encounters like this workshop sometimes feel to me like the few times where people are truly real. And there is a beauty to that. There is a beauty in the release of a person into death, not by their dying but in our letting go. I think the letting go is the truest act of selflessness and the scariest.

While I feel powerfully about these expereinces, the connections we make in these moments, I can't pretend to say that my own fears don't hold me back. They do.

I can talk to people about death. I can ask them about their loved ones, talk about my own. I am not afraid to say the word 'dead.' I'm not afriad to talk about my own death. but I have not mastered letting to and I have not shed fear. the workshop brought all kinds of feelings about my own mortality and death to the surface and I am not afraid to examine them here in the safety of my blog, but i was afraid to talk about it last night. Not afraid to talk about my death. Afriad to talk about its likley root. I still have not mastered CF talk and I feel it holds me back in some ways. That perhaps for all my talk about the connectedness of sadness and grief I can't let go of my own fears and really tap in. It made me wonder just how full of shit I might really be.

What does my "Annie Hall" meta balloon say??

Om shanti shanti shanti Om

The mailman delivered my mail to my neighbors' house. It was a letter from the local CF council. My neighbor returned it and said, "That's what you have, right?" I've lived here for 7 years and it is the first time that Cf has ever come up. When I was on IVs last year they called to ask what was going on, but I just said I had a bad infection. I didn't feel like going into details. I was sort of embarrassed by the mail thing. Partly because it just seemed like it was a secret, which seems dumb.


I went to yoga on Thursday, the first time I have been oback since 2006! I practiced Kripalu Yoga for five years religiously at a beautiful private studio. It was fabulous, so I am very yoga spoiled, but once I had baby #2 and stopped working it was just too hard and too expensive to keep going. I have been a yoga snob about going to yoga at the Y though, after having had such a great experience with my instructor at Tree of lIfe - despite the fact that yoga at the Y is free with your memebership. Anyway, finally my friend convinced me to go. Once I got over trying to compare the two in my mind and just gave into the practice, it was great. I am very sore. What I was capable of doing yogically 5 years ago is NOT what I can do now - though I tried a few times and gave my self a friggin charlie horse. Silly. I will go back though. I didn't realize how much I missed it.

I'm about to get sick. The guy on the elliptical next to me is constantly coughing up phlem! Its been 30 minutes and I can't take it much longer!

The above was posted by one of my friends as their status update on FB. Oy. She doesn't know I have CF, I don't think and probably the guy was a 100 year old smoker, but I still felt like posting back a snarky comment. I didn't.