Saturday, October 15, 2011

being lonely is a habit, like smoking or taking drugs - I quit them both, but man was it rough

I haven't been myself for sometime now. Probably a few years, but particularly the past 2 years and most acutely the past 10 months. I know the reasons for a lot of this. It's just that I kept believing that I was in a funk and that I'd snap out of it. I mean, we all go down in the hole from time to time, don't we? The thing is, I haven't been able to crawl out. I am in deep. I finally decided it was time to give myself a diagnosis. Situational depression is certainly part of it, but the past 10 months can only be filed away in one place that I can see: Post traumatic stress disorder. I have nearly every symptom listed and it's all following a catastropichally horrid even that took place January 13th and has unfoled over the past 10 months.

Symptoms of PTSD fall into three main categories:

1. "Reliving" the event, which disturbs day-to-day activity
•Flashback episodes, where the event seems to be happening again and again
•Repeated upsetting memories of the event
•Repeated nightmares of the event
•Strong, uncomfortable reactions to situations that remind you of the event

2. Avoidance
•Emotional "numbing," or feeling as though you don't care about anything
•Feeling detached
•Being unable to remember important aspects of the trauma
•Having a lack of interest in normal activities
•Showing less of your moods
•Avoiding places, people, or thoughts that remind you of the event
•Feeling like you have no future

3. Arousal
•Difficulty concentrating
•Startling easily
•Having an exaggerated response to things that startle you
•Feeling more aware (hypervigilance)
•Feeling irritable or having outbursts of anger
•Having trouble falling or staying asleep

Just writing about this makes me want to cry. I've been hiding out in my house in the shroud of my fear as if my fear and vigilance will protect me.

I've realized that I have not got much faith. I mean, yes, I have always been a person who has prayed for guidance and help, for protection of myself or my children, to express gratitude. But I've never had faith that 'god knows' what's best, or that things happen for a reason or that if I just put my faith and trust into a power greater than myself that things will happen as they should. I'm terrified to relase that kind of control, even if that control is an illusion.

It's an angry circle that I can't get out of. I haven't even been doing treatments, if I'm to be really honest. I just don't care. I don't have the motivation to do anything than the basic requirements. I am miserable, but I don't know how to get out of it. I will make plans: get on the treadmill, sew something, do just one treatment for the day - but when the time comes, I just can't. I take my kids to school; I do the housework required of me; I teach my class and grade the students' papers. I do what I have to do, but that's where it all ends.

Quit moping. Get it together. You're crazy. It will be good for you. Just do it. you're selfish. Let it go. Stop living in fear. It's your own fault. If only you'd...

all these words swirl around me, in my own head and spit out by others. Some mean well, some are angry with me. Everyone is probably frustrated.

I am not trying to be like this. Honest to god. If I could afford a psychiatrist I'd go. Though meds, meds, meds. The answer to everything, right?

I just can't help it. Certain painfu episodes play over and over in my head. I imagine people gloating at my pain. I want to hurt somewhere besides my heart. I want to stop hurting. I think I've cried everyday for 10 months. That's like 300 days of tears. I hold my fear so tightly. I was doing OK, maybe up until we returned from Costa Rica and then things - precariously built up - toppled over and I've been stuck under the rubble since.

I don't want help. I do. I don't want someone to pull me from my bed and slap some sense into me, but maybe I need it. I have never been like this before and I keep waiting for it to end. But some of my thoughts don't have an ending that ends well.

If I didn't have my kids - as much as I feel like a crap mom - I don't know where I'd be. Maybe somewhere tropical, maybe dead. They are a buoy. They keep me here, grounded, but also they keep me here. Running away isn't as easy with two lives under your care.

I don't want responses. I don't want to hear anyone cares, I want to be me again. I want the hurting to stop. I want to stop being afraid. I wish for a faith strong enough to carry me through

"Jesus and Mary, can you carry us through this ocean into the arms of forgiveness."

Friday, August 19, 2011

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.

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."

Tuesday, May 24, 2011

down in the boondocks

It's kinda hard to type with this monitor thing on my middle finger.

I'm in the ICU getting desentitized to Fortaz. I totally balked at the idea of coming into the ICU, but it's been great - as great as hospitals can be anyway. I mean, I've gotten my meds on time, my RTs were quite knowledgable about CF, and I slept all night - at least until my nurse woke to tell me by BP was 77 over I dunno what. I think it was a fluke. 77! Makes me wonder WTF happens when I sleep at home! Well and I've got all these damn cords all over. Still, I'll take this over the Oncology floor where I was before n.e. day.

So 10-14 more days of IVs is coming my way, but I'll deal. I want to feel good for our vacation which is rapidly apporaching.

That's about all u have to say. I want to go home!

Thursday, May 5, 2011

I lied. Reaccessing today for 4 more fun filled days of IVs. Boo. At least its just the one m
ed, right?

Wednesday, May 4, 2011

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!)

Wednesday, March 23, 2011

she's a good hearted woman in love with a good timing man

I love me some "old" country. I use the term "old" loosley, as I mean "old" as even up to the nineties - before country became the top 40 popular, trendy genre it's becoming now. I mean, I saw Faith Hill at the 4H fair in about 1996 long before Faith Hill was known for much of anything. And that's not to say I don't occasionally hear a new song that I like, it's just that tunes such as "Honkey Tonk Badonkadonk" or "She Thinks my Tractor's Sexy" just don't pull on me the way a little Hank Williams, sr. or jr., can or the way Crystal Gayle singing "Don't it Make my Brown Eyes Blue" does.

As a kid my dad used to listen to country music when he'd make us lunch. This was when I was really young. My dad made this sandwich called a "veggie special" in which he took a piece of whole wheat bread, spread some pizza or spaghetti sauce on it, put a little wheat germ on top of that, added some frozen mixed vegetables and then topped it off with a slice of American cheese. Into that new contraption called a microwave it went, and yum yum.

My parents were newly divored and though my dad was definitely the more health conscious of my two parents (hence the wheat germ. We also ate carob, weren't allowed gum with sacchirine in it and visited the Mekong Market where he bought little glass vials of ginseng which he called "Kra-teen Daaang" (sp)), he wasn't as much of a chef as my mother. As we sat at the table and waited for him to make the veggie specials, he would turn the little radio on in the kitchen to an AM country station. I can still hear him singing "Texas weh-eh-men" in a low baritone.

My dad introduced me to a lot of different types of music and for that I am really grateful. He did his Master's thesis on music ethnography in which he wrote about the blues. I assume thisa was when his vast study of music really started. The music of my childhood ranged from the reggae beats of Bob Marley, Peter Tosh, or Burning Spear to the wailing guitars of the Kings: B.B., Freddie, and Albert. Some days it was the jazzy sounds of Gato Barbieri, Wes Montgomery, or Miles Davis. I heard the bizarre sounds of Sun Ra and the melodic Augustus Pablo (I wanted to name my daughter Augustus or August if she was a boy and call her Gus. Augustus was influenced by melodian player Augustus Pablo and August was influenced by the Grateful dead song "Wharf Rat": "My name is August West and I love my pearly baker best more than my wine")).

My dad was a big Beatles fan so there was no shortage of them or the Rolling Stones or Cream and other music of the sixties and seventies. Other names that come to mind are Bloomfield Cooper and Savoy Brown, Leon Russell, Santana, Howlin' Wolf, and Charlie Parker. I remember on Friday nights we would go to dinner and then rent a movie (the VCR was also a new thing at this time). We watched Movies like "Bird" and "Crossroads." Clearly, my childhood musical education did not suffer. My dad was making mixed tapes from his record player waay back in the day. And so, in the afternoon we'd listen to country music.

When I met my husband he introduced me to a new subculture, one I had not really been privvy to in my middle class (maybe even upper middle class? I'm not sure where the class lines divide, really) upbringing: that of the "working man."

My father was an academic, my mother in social work, and my step mother a physician. My grandfather was Vice President of an Insurance company on one side and the other worked for a short time as a Foreign relations represenative for a local company that made materials used in WW II. That grandfather was from a small farm community rife with Amish called Nappanee. So for all our "worldliness" (my grandmother was the daughter of a diamiond cutter and grew up in South Africa) there was always that tinge of good old farm folk within us. Still, I knew relatively nothing about the world of the skilled trades and construction. My knowledge of construction was basically the stereotypical guy eating his lunch from a metal box sitting up high on the beam of developing building and whistling at women as they passed the site. G showed me that most of what I sterotyped wasn't true and I found great comfort and happiness with his friends and family. It was an easy integration of lifestyles and we found enjoyment on both ends of our spectrum.

G came from a family of brick layers. His grandfather, father, and both brothers were in the trade. G branched out and chose plumbing/pipefitting rather than bricklaying and much of this was due to the training he recived when he was in the Navy. His maternal grandfather had also been a Navy man though I don't know what career he had after that.

When I met my G I wasn't just introduced to this "blue collar" world, but along with that some new music. I started listening to Waylon and George Jones, Hank jr., Lynrd Skynrd, The Allman Brothers and The Marshall Tucker Band: Outlaw country and Southern Rock. It wasn't that i didn't know who most of those musicians were, only that I hadn't really listened to them. My dad had once forced me as a teenager to go and hear The Charlie Daniels Band one year when they came to the county fair. "It's Charlie Daniels, man!" he exclaimed. "You can't miss an opportunity to hear Charlie Daniels. I went reluctantly, but groused the whole time.

By the time I'd met my husband at age twenty three I'd formed my own musical taste, influenced by my upbringing and incorporated with my own preferred styles: folky rock, alt-country, and folky punk.

On one of our first dates my (not yet) husband and I went to a concert to hear Deep Purple, Ted Nugent, and Skynrd. Though not much of a fan of Nugent and Deep Purple, I really enjoyed hearing Skynrd. It wasn't the original band, but at that time there were still three of the original members. I'd been listening to quite a bit of classic rock in the time before I'd met my husband and had taken quite a liking to the Eagles and Bob Seger. My husband had a motorcycle when we met and Seger especially seemed to go hand in hand with this new guy: my pipe fitting Harley riding (soon-to-be) husband and this very exciting new romance.

After a few years together and my husband and I getting an ipod, I really took to the outlaw country. He had a lot of CDs I had never even heard until they were downloaded into the itunes. These songs were of hard working, hard drinking men and their tough and loyal wives. I felt as if G and I fit right into the mold of the stories told in those songs. Especially after out daughter was born and I was no longer spending as much time outlawing it with him as I was home with our baby. I truly felt I was becoming the like the women who sang and were in the songs.

The sad thing is, as much as I enjoyed it, I can't really listen to that music much any more. It has become too painful. I don't want to be married to an Outlaw and I don't want to be a woman who is singing about fighting for her man. It's funny that Hank Williams jr.'s song "Women I've Never Had" used to make me smile. Now it sort of makes me sick. "Jackson" makes me angry. Hearing "Whiskey Bent and Hellbound" is liable to give put the urge on me to put my fist through something much like Loretta's, "Fist City," though I can't listen to that one much either. Willie's songs still pull on my heart strings but they hurt too. I don't want to be the good hearted woman any longer.

I've been searching for songs that speak to who I am and where I am right now. As a teenager I used to play a game where someone would give me a word and I would come up with a song lyrics to go with it. I always said "life is a medley." Nowadays my motto has been more "music is god" and I've taken to letting the shuffle on the ipod teach me whatever lesson I am supposed to learn for the day. I'm trying to believe that things happen as they should and that I can only control so far as the end of my nose. That's left me adrift in the musical world. Despite all the music I've been introduced to in my life, I can't find a fit right now. I don't quite see myself heading into the Chritian rock arena though I suppose a song called "In His Hands" could work for me if it was perhaps renamed to something like "Wrapped up in the Energy of the Universe." and I bet that song exists somewhere too, though it's probably being chanted by a bald New Yorker who dropped out of Julliard to live in a Indian Ashram while his grandmother paid off his student loans for him.

My point about the music may have been lost, but what I'm trying ot say is that I am adrift right now and I am looking for an anchor or an identity. The previous nine weeks have made me reevaluate who I am, what I believe, and how I see myself. I can't find a song to identify with right now.

I am starting to believe that there is purpose in life that isn't always obvious as events are unfolding (maybe I always believed that, but it seems really obvious to me now). I'd like to think that my days spent as the faithful Outlaw wife had meaning and that the catastrophe that unfolded around me two months ago might just have been the answer to my prayers (and how fucked up is that anyway? if everything happens for a reason then the universe is one ironic fuck up of a place). If this is true, then I hope at some point I can listen to Waylon and Jessi singing "I ain't the one" again without breaking down. that I might once again enjoy crooning along with Hank about my wild friends that have settled down because I will be one of them. I may not identify in the same way with the music, but I won't have to shut it or certain parts of my life out of my mind because of all the hurt.

I'd like to imagine the broken pieces of my life settling into a compact pile of debris that's busy making diamonds under the pressure. If life happens as it should, and I can imagine a celestial hand holding me gently through it all, then I know every time things seem the most dire I will be eable to unearth one of those diamonds and find the beauty that comes from disaster.

If it happens as it's supposed to, then I can still hang on to Willie crooning, "If you had not fallen then I would not have found you, Angel flying too close to the ground." and all will not be lost with who I was but only that more is to be gained with who I am in the now.

(I totally apologize if this isn't all that coherent. I've worked on it off and on all day amid interuption after interuption and I just want to be done with it - so off to the internets it goes!)

Friday, March 4, 2011

I heard the news today oh boy

Yesterday my husband and I did a "Day in the Life." Well, mostly I did it, but he was in on the gig. I noticed a few main things while looking at the pics I was going to use:

1) my son is missing from all pictures. I think this is mostly because he left for school before I got up, he came home after school and immeciately went to play with his friends, and then when he was here hanging out, I was busy grading papers and the like. Anyway, sorry mijo.

2) I had clinic today which I took no pictures of. I felt wierd going in to my clinic and snapping pics. I was going to take a pic of the outside of the bulding and a few inside the exam room, like of my sputum cup or something, but I forgot. So I snapped a picture of my PFT print out when I got home. (FEV1 was 72 and I hadn't even done a treatment yet that day, so that's great (though 25/75 was 26, so clearly there is a big discrepancy there and that's where the treatments are really making the difference (the highest I've seen that in years is 39 and I think that was post IVs)).

3) I went out and had a cocktail with a friend and didn't snap any pics there either. It would have been proof I actually do have IRL friends! I'm not the cyber loner I come across as. :) I'm just a picture loser. But she doesn't know I have this blog and I wasn't ready to explain it yet (she does know I have CF though), so just enjoyed my "pom peche" martini and let the camera rest.

Point being: lots of holes in this DITL, so I guess in a way, it isn't represenative of my life fully at all. C'est la vie, n'est pas?

oh, and 4)I might have a broken nose. The baby I sit for head butted me last week. You can see the line where my glasses hit against my face and my nose is pretty swollen near the bridge. It's ooogly. I surely wasn't thinking this was going to be my most beautiful day when I decided to do this DITL!

Gregg is up and getting ready to start the day's project while I take Miss M to school: tamales!

Miss M busted trying to feed the dog cheerios.

This is how I look in the morning. With a busted face. sca-wee!

Off to school!

Picking up cumin, chili powder, black pepper, and some candy (not for the tamales, for mah belleh).

corn husks a-soakin'

cerdo tirado!

We had to set the tamale makin' mood

sneaking a pic of my man lathering up

picking up Miss M from school. I think my car needs a wash.

Nothing sweeter than seeing the preschoolers coming out of the school doors. Melts my heart everytime.

cleaning up puppy pee. When will he be trained??

My girl

Posing with my tamales before devouring more than I want to admit to

Hot tamale baby! Who knew food would be such an important part of this day?


Gregg and his pup

The pup. Gregg took this pic. He is a far better photographer than I am, but I can't get the camera into his hands enough.

Trying to get Slugger to wake Marls from her siesta

"I don't wanna get up!"

The dog says, "Why do you people always make me do the dirty work?"

Back to sleep for a bit.

I told Gregg to take a picture of me that captured his love for me

This is it: the picture of love.

My chores. Laundry. I don't mind putting it in the washer, I don't mind taking it out. I HATE folding it, and I ABHOR putting it away. Give me a toilet brush any day, seriously.

Getting ready to have a cocktail with a friend Hair down?

Or up?

The meeting place for the alcoholic debauchery.

I came home and Gregg and his friend were watching youtube videos. The friend pulled up some beheading clip. I told G not to watch it. I told him. He watched anyway and was disturbed and upset for the rest of the night. Sometimes I have to say it: I told you so. I did not watch nor listen to such a video. Just thinking about it makes me ill.

Face washed, contacts out. Back-to-normal Shan.

Trying to get a pic of nekkid G. Undies are close enough. He might kill me for posting this. It may disappear.

good night moon. good night dog.

scrub a dub dub

Gregg and I taking a nighty night pic

I told him we should make out in front of the camera

we were laughing about this and I started to cough when he went to take the pic so I covered my mouth - partly out of polite habit, partly because I didn't want an ugly red faced coughing pic on here.

I told Gregg to kiss me. This was his reaction.

Got him to smooch me anyway. <3

Wednesday, February 16, 2011

and if you're somewhere out there passed out on her floor,Oh, Joey I'm not angry anymore

"if you believe that feeling bad or worrying long enough wil change a fact, then you are residing on another planet with a different reality system"(Dr. Wayne Dyer, Your Erroneous Zones).

When should we detach? When we can't stop thinking, talking about, or worrying about someone or something; when our emotions are churning and boiling; when we feel like we have to do something about someone because we can't stand it for another minute; when we're hanging on by a thread, and it feels like that single thread is frayed; and we when we believe we can no longer live with the problem we are trying to live with. It is time to detach!...A good rule of thumb is: you need to detach most when it seems the least likely or possible thing to do (Beattie, 65).

I've understood the practices of quieting the mind, detaching, watching the thinker etc., for some time. I even fathomed that maybe I was slightly enlightened about the world because of all the knowledge I had. The truth is, I know nothing. I have truly been humbled by the recent events in my life. I've never been one to serve up platitudes such as,"It all happens for a reason," or "God has a plan," but suddenly I feel like perhaps I can abide by the idea that there are no coincidences.

I suppose in any time of our lives when things seem deep, dark, and dire, we try to search for some sort of meaning in it all. Isn't that what Viktor Frankl wrote about, Man's Search for Meaning; from the murkiest of places we can find some sort of salvation (and I don't mean that in a complete Christian sense, but whatever floats your boat)?

So here I am, clamoring out of this fucking hole I fell into and I am searching for some sort of meaning in it all. My mind constantly bubbles with "what if," "if only," "I should have," and "why why why?" This thinking is getting me nowhere except for more mired where I am, stuck and miserable.

So the idea of detachment is one I am trying to get into. And in that, I feel that I need to start learning how to let go of fear. Once I am able to quiet my mind for just a few moments (not easy), I can actually see, smell even, the fear steaming out of me. I live and breathe it. I have often believed if I was diligent enough with my worry that I could "protect" people. I had to be diligent, because one failed moment of forgetting and BAM! something awful might happen. DOes this make me sound nuts? Well, I think maybe I am.

It makes me cry when I type this that I feel I've found the place for answers. The least likely place (I thought). Alanon. yup. My mom convinced me I might just give it a go, and I did. I walked in the first night ready to spew the story if my vile fucked up life all over everyone there. I wanted to feel better about my fucked up life because they all had a fucked up life too. and they did. so many of my feelings were validated: wishing death on a person (now you've seen my true evil nature), driving down the road and thinking of never going home, blaming myself for every little thing. Except, some people there no longer saw their lives as fucked up, even if they were living in an active alcoholic home (which I am no longer. Mi esposo tiene one month sober!). They had discovered ways to live with some medium of peace despite. Not without struggle and work, of course, but achievable.

I was raised Episopalian though I officially stopped declaring myself Christian around 2001 when my step sister was killed in an accident.

When I look back at the major spiritual struggles I feel I have faced in my life, I see three. Two followed a death and the third, this most recent also follows a death of sorts - the death of the life I thought I knew before January 14th of this year.

In 1994 my nine year old cousin was killed in a boating accident. At the same time I had a pretty good relationship going on with pot and older boys. Lots older sometimes. After my cousin died I started to fear for my own mortality. I spoke with the priest at my church, began to read daily prayer books and really immersed myself in the faith I was raised in. At the time, this broght comfort and - meaning.

Then, right before my sister was killed I'd begun to study yoga and more "new age-y" teachings. I looked into the ideas behind cosmology and quantum physics, the Gnostic bible. I could no longer blindly believe in "god" as I knew it. I had never, even as a child, been a big Jesus person, but always had (and still do) believed in God. I just started to change my ideas of what god meant. I wasn't sure where I saw meaning any longer, but I knew I wasn't finding it in the pews at the church I was raised in. This lasted until recently.

I have not changed my idea of god. I haven't started bible thumping or anything or the sort. I have just allowed myself to believe that my god might actually have the ability to control things better than I can, so why not give up the fucking fight for a while and try to relax?

I cannot change ANYTHING - what happened in the past and what may happen in the future. I don't mean this as complacency, and this is somewhat of a new uniform I am trying on here. The ideas behind AA and Alanon are a nice combo of the religion I was raised in mixed with the principles and practices I found worked for me when studying yoga and other Eastern spiritualities.

So I won't start prosthelizying (sp), I swear! I am not some serene person walking around praising god and letting the universe lead me where it may (at least, not yet). But I want, want, want nothing more than a little bit of inner peace. I am exhausted by living right now, but not ready to let go just yet.

All that said, I have one confession to make. Should I stumble upon a certain someone before my metamorphisis is complete and my anger and rage have subsided, I am going to hock a green pistachio CF pudding loogey on that bitches face so fucking quick she won't know what hit her pretty litte bitch eye. Well, maybe I wouldn't. But I enjoy the fantasy.

so yeah, there is still work to do. :)

Sunday, February 6, 2011

only broken hearts can sing

I have a new reader. Someone very special. I can't say how thrilled I am with that. It's the smallest of things that often mean the very most. Thank you; thank you for seeing it was important to me and caring enough to take a peek.

Wednesday, February 2, 2011

I'm hoping for a sign, pray that I'm anything but fine

They say ("they" being my grandma's in "they say" you shouldn't do this or "they say" you should always do that). So, "they" say there are 7 stages to grief.

Once I realized that grief was as good an explanation of any for what was happening to me, I started to actually pay attention to what was happening. Being academic and somewhat of a nerd can be helpful when you're so caught up in the hornet's nest in your head and car wreck of your heart that you need a moment to regroup. You do that by being a nerd. You read books on your situation and take notes; you dog ear pages and refer back to other books you've read for a totally unrelated reason. In this research for maning, I came to grief. I was trying to explain to someone that my emotion was coming in waves: sorrow, anger, fear. Each were erupting, sometimes without notice, and often overlapping one another; the push and pull of the emotions playing like the tide on my already damaged heart.

The epiphany of grief lit up as I remembered quoting Joan Didion from her book The Year of Magical Thinking in my thesis (close to being done, but quite railroaded by recent events) as she described the waves her grief came in following the death of her husband.

I realized that in a way, I have suffered a death. The death of all I believed was true up until Jan. 14th 2011. Life now comes in two stages: before and after. If I look at pictures I have to think: was that before, or after? Songs, letters, cards - any memnto, any memory or keepsake all get sorted into those same before and after piles. And from after until now, that was the death. There is no truth in that pile. It's void. It's a mirage, it's shit. So the new pile, the one starting January 15th is the rebirth pile. That's the reincarnation of all that was the before pile. and there isn't much there yet in that new category, a few crumbs maybe, and even those keep getting swept away when the tide rolls in.

Back to grief.

Seven stages:
1) shock and denial
2)Pain and guilt
3)anger and bargaining
4)depression, reflection, loneliness
5)The upward turn
6)Reconstruction and working through
7)acceptance and hope

So of course these stages aren't worked through in the order they are necessarily represented here, and they can overlap; some may last longer than others. I am not even sure that I believed in this kind of thing until I was mired in the muck of it. But here I am, and I am desperately trying to reach toward the final idea of hope. Acceptance too, I suppose.

Denial, that came first. That's been a way of life, we know this by now. But denial lasted all the way up until the proof was being smashed into my face like one does with a dog that shits in the house (we don't do that to our new puppy, btw). The shock was immediate. It was an actual physical response. Cold, shaking, unclear thinking. I still think I am in shock. Sometimes when I think about all that has happened, I find my heart beating fast and I feel I might hypervenilate.

The pain was also immediate and it's an ache to the core like nothing I have ever known save for the death of a loved one. I wrote about this as well when I was writing my personal piece for my thesis and I likened it to a cast iron skillet being wedged into my chest.

I wondered over and over, what had I done? Was this my fault? What could I have done better, different? If only I had done this or that this way or that way. I still wonder. I wonder if I am handling things now the way I should. Nothing I do feels right.

Anger. Punching biting kicking scrathing yelling seething spitting cussing despising hating hurting destroying broken finger broken heart broken promises broken life

Despression, relfection, lonliness. I have been in this stage for long before before and after started. I see now with more clarity why I was feeling depressed. A long cycle of things that started when after started. I have always been a bit lonley. I kind of like it that way. Reflection is a daily occuracne for me. The only difference is now my daily activites are interrupted by reflection in a way that isn' very productive. One minute I am shoveling out from three feet of snow, the next I am lost in thought and sent spiraling back through the previous three stages to the point i feel I am back at the startting place all over again.

The upward turn. Every day is an upward turn. Despite all the downward spiraling, the reeling back, the constant feeling like I am a hanster on a wheel spinning and apinning and getting no where, everyday that we're still here, every hour longer I go than I've gone before without completely losing it, those all feel like upward turns. I am still waiting for some moment when I truly feel some kind of "I see the light!" clarity. It's still very very dark here.

Reconstruction and working through is happening as I type and is all integrated into the upward turn. It's slow like molasses, but I pray to god just as sweet.

Acceptance and hope. This one seems the hardest. Not the hope, but the accpetance. Not only of what has happened but of my role in it as well. Because nothing is my fault. But something has to reflect my responsibility to the life both before and after and up until the rebrith, and then including that as well. I didn't make the choices that were made, but I was there when the making was being done. I have to accept that I wasn't there as fully present as I should have been (unless this train of thought means i need to go back to pain and guilt?) oy.

So, there it is. My journey. I never liked the journey metaphor for my life with CF, and I like it even less for my new life reincarnate. But I'm not sure what other idea works for this except to say that I'm there at that fork in the road, the road less traveled, the road not taken. My prayers are raw and deep and yearning. I'm begging for a sign, for the knowledge that I have indeed opted to follow the right road.