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."

this is the end, beautiful friend, the end

Today has been a day of endings.

I finished up my last dose of IV Tobra about twenty minutes ago. This is the only time I have ever been on just one IV med and man, is that cake! I am also on inhaled colistin, so it's not like I am on only one med, but still, one infusion BID = sa-weet! So that's done.

That's not all as pie in the sky as I just made it sound, since this was an experiment to see if it would help me before I need to go in and get desensitized to meropenum. er, I guess it's Imipenum. Either way, I haven't heard much good about either med, so I am not really looking forward to that and honestly, I only feel maybe 70% better. I got a stomach virus in the middle of this course of meds that left me with a 102 fever, vomiting, and all together miserable. I feel that it set me a back a bit. Once the fever edged over 100, my heart started beating really hard and my breathing became very labored. I was acutely aware of this, much as I remember I was with H1N1. There is just a point where it seems that my body really begins to struggle with fevers. Maybe everyone's does, I just don't have a whole lot of experience with fevers.

I was thinking today as I was infusing my last med about where I am with my health. In 2007, I weighed 103 lbs and had an FEV1 of 50%. I did no treatments up until that point. Well, no, I guess I had my Vest, because I know I got that soon after my daughter was born. I remember because my boobs were full of milk and it hurt to Vest at first. But anyway, a year later, that's where I was. I feel it's entirely possible, had I not changed that road I was on, that I may not even be here today. Who knows where my health might have been and then to have suffered through the Swine Flu epidemic? yipes. I feel certain it was the grace of god and lungs that cooperated that that didn't hurt my body worse than it did, and I know I lost some lung function over that.

Anyway, I guess that's neither here nor there because I did get compliant and I am still here and I do have a baseline that now hovers around 70 and that is terrific. So I have to remind myself when I reeeaaaalllllyyyy don't want to do IV set #2, complete with some hospital time, that that's just how you have to play this game. If i want to be here for a while longer, I gotta play these cards right.

I really want to be here to see my kids grow up and have kids of their own. I was reading a book to my daughter tonight about a kid that got an ugly knitted sweater from his grandma and I felt deeply how much I want to share that part of life with my kids. It's a realy hard pill to swallow that I might not. Sometimes I can get kind of flippant and even obstinate about it when my family spouts off uber positive thoughts about how possible it is for me to live for a long time more. I feel they are deluding themselves and need to realize the stats are not in my favor. But the truth is, the deep dark truth, is I really would like to be around for a while longer. Facing your own mortality is not easy. I know I am still far enough removed from dying that it solidly remains a "what if" idea. Many people I know are already in end-stage lung disease and I am sure their outlook and wisdom would greatly differ from my own.

I'd come up from the basement earlier tonight when I realized I left the phone down stairs. I asked my son to bring it up to me.
"I'm too tired to come back down" I told him.
"From your thing?" he asked, pointing to my chest. I said yes, that sometimes what's meant to make us better can wear us down a bit first. He called back up the stairs that he hoped they would find a cure soon. This is my son. Somehow squashing my parents' optimism about a cure doesn't seem as unkind as doing it to my son. So I called back, "I don't know that there will ever be a cure, but hopefully they can find something to help me live a long time." By then though he was already immersed back into his Xbox game and I was feeling a little blue.

I digress.

Another ending came as I finished up teaching my 3rd semester in the world of higher learning. I had a failing student complain about me and my "unfair" grading policies to the Dean of my department. She called and asked me if I would be willing to let him take his final exam again. I really debated this. It seemed if I said no, the likelihood of my rehire was small, being an adjunct low on the totem pole. At the same time, I have been trying really hard to be more of a stick-to-my-guns kind of person. What it finally boiled down to was that though I thought that this kid was acting like a spoiled brat, he was entirely capable of doing the work. So to be punitive and fail him based on bureaucratic rules would really be a bit asinine and would probably keep a bright (but slightly annoying) kid from doing something positive with his life. So I let him retake it. It kind of botched up my evening since I had to go in just for that, but he did well and passed the class. So he's done, as am I, for the summer.

I really enjoy teaching at this level. It's pretty unlikely that I will ever go back to full time school teaching, but if I ever do, I am totally holding out to at least get a position in high school. Or even night school, GED. I mean, my dream was to be like "Dead Poet's Society" or something, but it seems I always get thrown in with the lower echelon of studetns, be it skill level or SES or what have you. No matter why, they've sort of become "my people" and I feel I do well by them. So I hope I can continue at this for a while longer.

Finally, in the end of days, I sent my entire master's thesis to my director today. That consisted of 63 pages of narrative and 15 pages of literary context. It took me almost a year to finish it, partly because that's how long it took me, and partly because I had no deadlines and I am working with a very over worked faculty memeber who wasn't always quick on returning my emails and drafts. I am still waiting for her reply, so I may have to edit and revise a bit more, but the bulk of the work is really truly done. Thank goodness! It's such a weight lifted off of me. I will actually get this degree. For a while there it seemed as if it might not happen.

With all that, I leave you with pictures. I just got a new computer and I have a built in camera (so yay! Skype!). I'm only about 10 years behind the rest of the world with my technology. I was just playing with the camera this morning and then again after I finished infusing my last dose of the Tobra.

Enjoy my kewpie looking pictures. (I'd rather be Kewpie looking than Ewok, thank you very much!)

come over to the window my little darling, I'd like to try to read your palm

I'm feeling verbose today.

I find blogging so much easier than writing my thesis, which is now going on one year. Some of that is my fault. Well, most of it. 6 months was spent waiting for my director to read my proposal and set up a meeting with my committee, but since May, when that meeting was, has been my own apathy. I've set a new goal: my completed first draft will be done by December. I have about 40 pages written and in many ways it could be finished, I just need some serious editing.

My point is, everytime I sit down to work on writing it, I freeze up. I keep expecting to pour out honed essays, works of great insight and beauty! I rarely work on a blog for more than the time it takes me to write it and reread it (and as you can see by my many typos, even that doesn't always happen). Yet when I read back in my blog I find I really like some of the things I've written. So I keep stealing them for my thesis.

I've realized here in CF-land that since we all read one another's blogs, there are often concurrent themes and events that need addressing. I was wondering if, because we know that we are reading one another's journaling, we don't feel the obligation to make some sort of commentary on said events. I hope that doesn't come across the wrong, I don't mean it in a keeping-up-with-the-Joneses kind of way, just that this community is tight enough that when something of significance occurs, it touches us each deeply and blogging is one of the ways we reach out to one another to talk about it. And, let's be real, because we all want to release our own thoughts and conceptions into the blogophere. This has both positive and negative ramifications, of course.

Sometimes I write something like what I wrote above and I think it had great insight. Then I reread and it and think WELL, NO DUH.

Anyway, I had this great little note written out about blogging and the internet. I can't fnd it of course - one of those cocktail napkin epiphanies that all writers seem to be able to lose rather than use. It was something along the lines of how our blogs have become another outlet for our self-narrative (and in our case, for our illness narratives...hello thesis!). In a way, our self-narratives were written for us at conception as far as CF goes. Because of that commanility, we now have to carve out an identity separate from our disease and from one another within that disease as a means of self preservation - hence our blogs. Most our blogs have the overlying theme of life with CF, but they are all tinged with our individual reflections of self undefined by CF.

Oy.

I am going to watch "Sex in the City 2."

We cradle together and fall down on our knees.

I interviewed my husband today for my thesis. I am not sure what I am going to use from the interview, but I thought some of his memories and viewpoints were very interesting and insightful. We've been a little estranged from one another for some time now, though we're working hard on getting it all right.

Marriage is not easy. I envy people who make it look to be so, though I sometimes wonder the level of their intimacy and honesty with one another when it does seem so effortless. I wonder sometimes if I'm just not getting it right, making things harder than they need to be.

Anyway, here are some high lights from the interview. I was trying to type as he spoke, so every now and again I could not keep up and ended up paraphrasing, but for the most part, these are our exact words. Some of my questions are left out though maybe they will seem obvious. I just could not type fast enough to add my own words in so I assumed I would remember what I asked.

Gregg interview 6–24–10

Do you remember when I told you I had CF?

I remember the weekend we went my brother’s at the lake and you told me. I remember I did not know what it was. Had no idea what it was.
Didn’t know anything about it until you started explaining it to me. (I don't remember telling him atthe lake, I remember teeling him on th ephone in the kitchen at the duplex I lived in at that time)

What did you think after I explained?

I didn’t really start thinking about it until you started on your machine and stuff

That was after Marlee was born

I know

You didn’t notice me coughing?

Yes, but I didn’t realize how far along. I just remember the stories of your dad getting you into swimming and sports as your treatment

What did you think when I coughed when we first met?

I thought you were laughing?

All those times?

No but at the onset of it

After getting the vest what did you think?

The things you had been talking about kinda, not hit home, but made it more “here it is” this is what it is and, "I have to do this as the treatment for what I have," you know, and it had to be a regime, you had to do it. I understood you had to do it.

Did it annoy you?

No not at all.

Did it scare you?

No I wouldn’t day that it scares me because I know you don’t have to be pushed to do it, if you had to be constantly reminded, that would make it more "do or die" but that is not your make-up. you know what you need to do and you don’t need to be necessarily pushed. Now running or any kinda exercize outside of that, it’s a little bit different, but I think you knew that all the years of not necessarily ignoring it, but not thinking it would not happen to you, reality set in for you too, you know, so you just kind of adopted it as a way of life.

Do you think differently when you hear me cough now than you did before?

Like eight years ago?
Your cough is different, you cough less at night.
We can’t wrestle around like we used to, we can’t grab-ass around

I feel like I can do more of that stuff now, because I actually do treatments now, but you don’t think so?

I agree you cough less. I used to be able to time it.
Well, I knew I know when you are going to stop coughing, I know when this is the last time she is going to have to clear it out and then she can relax because I can just tell by how you cough if you’re getting it up and out.
I’m not scared for you.

But I’m gonna die. nobody has "survived" CF or not died from it iunless, you know, they got hit by a car or had a transplant and it worked good like my uncle. But then you have Eva and Paul and all these other people over here

I’m not scared for you, I don’t feel , you know, it’s like that newspaper article I read about special needs kids like that little boy, I felt sorry for him because he will never have a functional life. you still have a functional life. I’ve never thought about your life being any different than it is today because I don’t want to think about that. it’s just not how I – you know, it’s not that it hasn’t crossed my mind, but that is not my everyday thinking. I know things will change for the worse, that thought is in my mind, but it’s not constantly rolling around in my head.
When you go on IVs, the first dose is all I think of, I get into the midset of: ok here we go, we have to get in the mindset and after that, it becaused normacly and I know what we have to do and what you expect from me. But I don’t worry about the next time you have to go on IVs.

I am just under the mindset of take it as it comes. I am better with reacting to something than preparing for something that is going to happen anyway.

Maybe at some point in this thing I am going to have to change the way I think about it, but I am not to that point yet. I am not at the point where I need to panic. there is a fine line between panic and concern and I am always concerned about how you are doing, but there is a fine line – like your mom, I mean, she means well, but I can’t think like that, it would drive me crazy. I couldn’t do my job and worry about the things that are going on. maybe I just don’t have the mental capacity to give as much attention as other people give to it and be able to handle all the other things that are going on, I don’t have the mental capacity…

I just prioritize and you are the most important.

I remember when I had to take Marlee and they were coming over with the vest…you were still nursing. she was little and you didn't want her here while you learned how to do it. I took her to the mall.

you did? the mall? I don't remember that.

I remember your first IVs, staying up until 2 in the morning the first night and you freaking out because we couldn’t get it started.

We had the pole

That was for the one, and the other one was the ball which you could carry around, but the one for the most part you sat in the kitchen and did it. and I remember all the hoses and shit.

Anyway, as I feel with this entire blog, this is probably more for my own fascination than anyone elses, but when he said he used to be able to time my coughing in knew when I would be done, for whatever reason that meant a lot to me, let me know he really has been present in all this, albeit silently quite often, but still, here.

win big, mama's fallen angel

Thesis work. I am posting for my own records, but also I'd love feedback. I need a draft by Aug and I am trying to get a good 20+ pages to my director before next week.

It wasn’t until sixth grade, my hair crimped, a black guns-n-roses t-shirt, when I reluctantly followed my mother for the last year to M Elementary school to meet my new teacher, that I remember becoming aware of what this meant. What CF meant for me. I smiled nicely at the teacher, checked the class lists to make sure my BFF Lo was in my class. But I felt something different in that meeting and so later that night I snuck the “A Child in your Classroom has Cystic Fibrosis” pamphlet from between the Salem menthol 100s and bottle of my enzymes in my mother's purse and crept into my room. I had never read that pamphelt or much else about Cf before that time
“CF is a genetic disease. It is the most common life-shortening disease among caucasions; people with CF are living longer than ever often into adulthood (age 18 and older). Thick sticky mucous builds up in the lungs leading to recurrent lung infections. Malabsorptions leads to poor growth, stomach cramping, and frequent, loose, foul smelling stools. Other complications such as liver problems, diabetes, and reproductive system effects can occur.”

How could I look at myself: a girl people often remarked as lovely and assimilate words like sticky mucous, foul stools? It wasn't those things. I was those things. I had all the issues listed, but I didn't want anyone to know. To associate me with those words.

Some little part of me died that day. The ignorant part. Maybe the girlie butterfly part, if I had ever had one (I was, after all, a girl with crimped hair in a guns-n-roses t-shirt). I’d already had a rebellious streak. I was already irritated with the doctors who said I should not have a cat, who said I might start my period later than my pers, the constant flu shots and breathing tests. The social workers who meant well but who spoke in such a maple sugar sweetness that I simply wanted to bite them.

But that moment, reading that pamphlet, I felt the hope of a normal life being sucked away from me and in that vacuum I grew talons from my hands rays of red sprouted from my eyes. CF would not take me. I would not be thick and sticky and foul. It wasn’t a war I was waging, it was an absolute obliteration of all expectations. It would be a disinigration of every word every written about Cf in relation to me. I would not be what they said. I would need nothing. CF was an earwig and I was a shoe. If I'd idolized the rock goddess heroines of my MTV youth before, now I would become one. I would be shiny, golden, cherry red lips, a girl who was beautiful and desirable and wild and who in her three minute moments of MTV glory would never cough or shit or be anything other than perfect.

I became, at that moment,twelve year old girl with CF who didn’t have CF.


all writing on this blog is copyright of Shannon North

I heard somebody whisper, "please adore me"

Every month for about the last ten years I have been subscribing to a magazine called The Sun. The magazine hosts a collection of interviews, poems, and narrative pieces, both fiction and nonfiction. I find it to be one of the most honest collections about the human experience as I have even encountered, though often readers complain it is too dark, too sad.

Within the magazine, there is a section called "Readers Write." Each month the magazine suggests a topic and readers write in about it, much like a warm-up exercize in any creative writing class. What results is an interesting amalgam of experiences: sad, funny, some true, some maybe not.

I am set to start writing my master's thesis this spring and my proposal has something to do with Cf (not ready to get too into it yet, it is an ever changing endeavor). In light of that, I have been rereading old journals and blogs (I have been writing online for 10 years as well!). I thought tonight (this morning), instead of the same ole same old New YEar's blog, I would take this month's Sun Reader's Write and use that as a topic to start focusing on how I want to go about writing this paper, to give this blog a little oomph, and to also challenege you, o blog reader. I challenge you to address the same topic in my comments or on your own blog. I think it might make for some very interesting reading, and no, it need not be Cf focused...just go with it! Even better yet, link here to what you write (if you wish, or hell, don't).

So this month's The Sun Reader's Write topic is Narrow Escapes.

It's late and I need to sit on this topic for a minute. Happy New Year

love love me do, you know I love you

I know, I know, I have been a blogger terrible. But we moved, and I have this killer class this semester, and I did an art show that had me crocheting until my fingerrs were raw, and I've just been busy.

So I finally get a breath tonight. I have a midterm paper due tomorrow that if I read it one more time I might puke, so I decided to play internet.
I have ben getting all my ducks aligned for my master's thesis which I will be starting to write in earnest in December. I have decided to use Cf as part of the dealio. I don't know why, some sort of masochistic impulse, I think. But I am doing a memoir, basically, and I mean, really, what kind of memoir does a CFer write that leaves out the Cf part (the kind I would have written five years ago, maybe). I am a little nervous and a little excited about it. I am excited to have a creative focus, I tend to lose sight of things without cemented goals, so this will keep me busy.

In health news, I had a bone density scan today and I vist an allergist next week and I think I am going to do a prophylactic round of IVs soon since I have met my deductible for the year. I really don't want to, but I can't hlep but think if it holds things off another year or two like it did the last time, then I am in good shape. We'll see. Ivs and this class might be more than I can handle.

My boy has been having a hard time in school this year and I am close to taking out a few 4th grade teachers. I have been in contact with the principal and I am working on getting him a 504 - so you know, they can stop taking away his 15 minutes of recess and making him write lines instead (who on earth thinks this is a good idea or even an adequate punishment - did these people study ANY of the same education sources I did? and has anyone even heard of Alfie Kohn???) SO that has taken up a lot of my mental capacity each day. Rue being a mom.

So anyway, hello CF friends, and whatever other random people read this blog - I know you're out there, I see you make return visits, but who are you??? Reveal yourselves.

I love you all!