Showing posts with label coughing. Show all posts
Showing posts with label coughing. Show all posts

Monday, June 7, 2010

"Things CFers Do" from CFFatBoy.com


Hide When Coughing

MAY 31, 2010 · 1 COMMENT AND 2 REACTIONS

in RELATIONSHIPS

HIDE WHEN COUGHING

©2008-2010 =manyetikbant

We’ve all been there: in the grocery store, at the mall, walking the shelves of the library, when, out of nowhere it hits you like a sniper bullet to the chest. Youhave to cough. There might not even be enough time to be conscious that it’s about to happen. Yes, your chest just went there! You’re just about to be publicly humiliated in one way or another.

There’s no time to make a decision! It’s time to duck, slide, glide, or shove your face into your elbow to muffle the 747 engines that just revved up. I’ve hidden behind produce islands to tie my shoe, ducked around shelves, put up newspapers, and slipped into empty rooms.

Your surrounding audience is going to perceive you one or more of the following ways:

  • as someone about to die on the spot
  • as someone suffering from the swine flu
  • as someone who should have stopped smoking 512,478 packs of cigarettes ago
  • as someone who is going to infect them with whatever made you cough like that

Full, Funny Article Available HERE

Friday, September 4, 2009

Funny List Already Created, and Missed Blog = Read This Other Blog

Tonight I was on CF2Chat, trying to find someone to chat with, namely Piper. They had a quiz that is way funnier than my list earlier this week. This quiz shows how many CF people feel when people react to their coughing. Of course people are trying to be polite, but 27 years later, after about 6 coughs an hour, in a 40 hour school or work week, that's.... almost 7,000 times CFers hear these :

Most annoying response to your coughing, from a stranger... (please pick 3)


"Would you like some water?"

"Don't cough up a lung"

"Here's a cough drop"

"Are you ok?"

"Do you have Swine Flu?"

"Don't die on me"

::stare::

"Sounds like it's time to quit smoking"

"That sounds like Bronchitis"

"Something go down the wrong pipe?"

(Getting up and sitting somewhere else)

***********************************************

In other news... because I missed a post last night, here is my direction to another blog, if you need to get a dose of Cystic Gal without me:

http://amatteroflifeandbreath.blogspot.com/

This is a blog by another cystic gal that I find to be a lot like me in her cysterly ways. You may find this blog informative if you find mine to be!

Tuesday, September 1, 2009

Commentacular

This a post inspired and edited from comments made on my infamous post, Ten Things A CG Wants to Say that caused the internet sensation! This post comes more properly prepared with its own disclaimers! I presents to you:
Ten Things a CG Hates to Hear
by CG et al.

1. "Your cough sounds just like mine. I had that last week! It was horrible." (Teeda/CysticLady)

2. "Don't you go dieing on me!" (Ronnie/RunSickBoyRun)

3. "Will your grow out of it [cf]?" (Deb Wilson)

4. Complete silence in the room just as a coughing fit starts.*

5. Why are you still working? Couldn't you just, like, go on disability or something? I would never work if I had what you have.**

6. You have such a bad attitude about your illness. I saw this one interview with Michael J. Fox . . . he has a great attitude.***

7. So you're better now, right?****

8. Have you taken your [son/daughter] to the doctor? / You should get to the doctor! That cough sounds rough!*****

9. (Dramatic sigh, bows head to the right, makes a pained face, whispering) "How are you feeling?" (clutching chest)******

and tonight's CG specific #10. Thing a CG Hates to Hear . . . (drumroll)

10. Do you go to church?********

4*This is the CF equivalent of the moment at a party when someone tells a dirty joke and the whole party is quite just as the person says something distasteful. Which a) kills the otherwise funny joke and b) is embarrassing for all.
5**In my head I always think, yeah, I know, that's why I come to work all the time and you're absent every Monday. There are unemployed people in the world! Why do you get to work here? (I have thought this through the years, so the time/place are not important)
6***If I was on the Oprah couch, I'd have a good god-damned attitude too.
7****No matter what people will tell you ahead of time, if you answer this question with anything other than "Well, YES!" it will make someone extremely uncomfortable. They might cry or hang up on you. I'm serious.
8*****This question always seems to come from someone who is simultaneously exhibiting some unhealthy behavior of their own: either drinking, or smoking, or maybe a Big Gulp is involved. I always try to bite my tongue. I usually succeed.
9******I thought I was the drama teacher! Please don't comment and yell at me and say, "they are just concerned. you are too cynical, CG!" This sort of overplayed antic only comes from a Rachel Linde type of persona. A clucker of henhouses. A lunch table whisperer. An email forwarder. That's all I'm gonna say. Well -- and that sincerity is easy to read. Drama is great. I love it. It is not ever, ever sincere.
10********yes, i do. but thanks weirdos for implying that the reason i have CF is because I'm some sort of godless commie.* i'm sure there are plenty of atheists without CF and this Catholic gal's a Cystic Gal. So there! *Also, commies may not all be godless and godless people are certainly not all commies.

!This is my first "Unleash Your Story" post! If you read this post, you owe the CF Foundation $2! But don't pay yet. You will pay later....bwhahahahahah, when I am done in September!!! To see my pledges page, click HERE!

Sunday, August 30, 2009

A follow up to NUMBER 9 (...Number 9... Number 9 . . .)

Such a firestorm was lit by my little top ten list, Ten Things a CG Wants to Say last night. I am so glad I wrote it, but what a whacky ride today was watching the comments and emails and some phone calls come in.

Two and a Half Points for ToNight:

POINT ONE:
I feel, at this time, that I must be honest with you, the reader, and tell you something about the blog that you might have already intuited through reading it, or you might not have. This might be an element of the blog that you view as a turn-on, or a turn-off. This might be something you had not considered but do not really care about either way.

Any way you take it, I must share with you that everything I write in this blog abides by a code of truthiness. Not a single thing in this blog is a lie. However, some things may not be particularly true.

[Truthiness is a term first used in its recent satirical sense by American television comedian Stephen Colbert in 2005, to describe things that a person claims to know intuitively or "from the gut" without regard to evidence, logic, intellectual examination, or facts.[1] ]

For example, in regards to yesterday's list: I posted it yesterday, but I started writing it weeks ago. So, there is no really true time-stamp on things said in the blog like "yesterday, last week, this year..." etc. I've been a writer for about 23 years :) so I have a pretty big pool to draw from. And I'm not even kiddin' about that, y'all.

Not a big deal on the one hand, because I just want the writing to be truthful and have an effect. On the other hand, when I sent out Ten Things a CG Wants to Say last night, people were calling me and asking :

1. You got dumped by a bald guy last week? When did you get back with HIM?
2. I thought you stopped talking to your neighbor?
3. Why are you still on that chatroom?
4. Who called you from work and oh my god, what did they say?
5. I did send you a card, thank you very much! ...

etc!

Notice, the topics was "Ten Things a CG Wants to Say", not "Ten Things THIS CG Wants to Say." I have an idea for a post tomorrow based on a tweet I got today. That blog is going to be written for that tweeter. I want to write things that I think are universal for the patient experience, not all of them are going to be true for me in the very moment that I explore them on the blog.

POINT ONE POINT FIVE

I will be deleting comments that are personal narrative or use my real name or town or etc. Though I currently use my name on the blog, I work in an industry where I am always up for work, getting work, being googled, etc. So, I might periodically go anonymous on the blog and just take my name off it.

I also want to continue to use the blog to serve its audience, not my personal correspondence. That's what email and facebook are for!

POINT TWO:

What a wonderful conversation was opened up surrounding the topic of privacy vs. support at the bedside! My own T-Money and I had a wonderful conversation about the delicate balance it is to be a patient in the room, and a caregiver at the bedside. It seems that the moment a patient wants to be alone, it can be closely followed by the moment s/he wants a companion. No one has a proper etiquette book and CF can be an ugly, indelicate, impolite disease.

Sometimes patients want it all: They want to have privacy when they aren't at their best, but they need arms around them to help them feel better. Caregivers want it all too: They want so badly to do "the right thing" when none of their actions feel "right" because the situations themselves are very difficult.

My CysticMommy and I then talked about my responsibility to work on saying what I need when well-meaning friends come by my house and drop by with food. I could as easily say, "You can put the casserole down, I made coffee, tell me what's going on with you. I miss you!" instead of letting them lead the conversation and come and go so quickly.

Then, CysticLady and I talked and she shared that it's just good to get it all out on the table. With CF, most of the day we are battling battling battling to put our health first. It can be exhausting sometimes to have to be the director of every little thing like the smoking man at the cross-walk, or the neighbor at the end of the driveway. Sometimes you just gotta let it float by til a few months later you write a funny/sad blog about it!

Goodnight y'all!
CG

Saturday, August 29, 2009

Ten Things A CG Wants To Say: The post so crazy even my disclaimers need disclaimers.

1. To the guy that broke up with me right after I got out of the hospital: You are cowardly, and selfish, and also bald*.

2. To the neighbor who keeps asking me when I'm going to get better: I am not going to get better. Google CF already.

3. To the lady who keeps sending me bizarro emails about one of my comments on health care: Democracy and free speech are a bitch. Leave me alone.

4. To [people] who wondered why I'm still working: So that I can do fun things like buy groceries and pay my rent. Oh, and because I love my job and I'm actually really good at it.**

5. To my extended family members who don't send me a get well card anymore when I get sick: It would be nice to get a get well card when I get sick.

6. To my acquaintances who want to drop by the house: I don't need a casserole, I need you to hang out with me like a normal human. And I don't like casseroles.***

7. To my cat who is sweet, laying in bed with me while my port needle is being changed: You are the best and could you write a book on dating for men who date women with CF?

8. To the person who smokes a cigarette next to me outdoors and waits until I ask them to move away from me: Move away from anyone that you see with oxygen on and quit smoking already.****

9. To the people who visited me in the hospital that literally ran out of the room when I started coughing: I know you were trying to give me privacy, but that made me cry.*****

10. To the nurses and doctor and family and friends and bloggies that are nice to me even when I'm crazy: Thank you and I'm sorry.

Love, CG

*I would not normally make fun of someone for being bald. In fact, I believe the saddest thing to come of this last relationship is that now I am, in fact, attracted TO bald guys. However, I couldn't think of anything else mean to say and the one thing I know about bald guys is that they are sensitive about being bald.
**None of my current colleagues have actually said "You should stop working," to me. But, it's an idea out there in the world. It's an idea. Like it's an idea that people think about their oldest co-worker . . . "Why is s/he even here?" Go on, admit it. It's an idea out there.
***I am going to work at saying, "Please bring me yellow curry chicken (thai)" and "Please come in and hang out for a while. I miss you." even if it's sort of awkward.
****Yeah yeah yeah, nicotine is an addiction. So is heroine. But I don't have to walk through ten heroin addicts on the way into any public place, and if I did, I wouldn't feel bad giving them a weird look either. I just think it's really funny when I'm standing somewhere, like at a crosswalk, and a smoker comes up and stands next to me, looks at me, I look at him, and then it's like, "Which one of us is gonna walk away?" - as though it should be me? Isn't there some sort of chivalrous smoker etiquette? Where is Emily Post when you need her.
*****See future posts. This one really started a firestorm! This is not about YOU. It's about PEOPLE who visit PEOPLE with CF. And maybe a little about you. But not in a mean way. Just like, something I'm thinking about. Let's keep thinking and chatting about it. Okay. 'Nuff said.

Thursday, July 30, 2009

Catchup, People! And new exercise idea

I've been told lately that there are too many long posts up and that people want a sec to catch up. Okay- so here you have it tonight!!

A few brief updates:

There will actually be less narrative posts, I think, in the next two weeks because I start a huge project on Monday (yay) and anticipate being busy at night getting ready for the morning. Due to my new project over the next two weeks . . .

I also ! am bravely ! starting !! a morning !!! workout !!!! routine tomorrow !!!!! I'm going to try to work out in the morning, which I only succeeded in doing at Pulmonary Rehab. But I DID do it. But it sucked. But I DID do it. I think it is ultimately better for my lungs to go through that process, though it is not more gentle on them or on my diaphragm, because I have pretty bad morning cough. BUT it makes the rest of the day better. I don't know.

I'm going to try it though... I'll report back. In an ideal world, I could exercise at 5PM or 6PM when I'm home before dinner, feel like it, I am intellectually drained from the day but not physically tired, and my lungs would remain clear a full 24 hours until the next workout. Alas, the world is not ideal.

The downsides (for me) to a morning workout are: I am not that coherent in the morning, have to lay out workout shoes, socks on the treadmill; neurotic fear or sleeping through it that interrupts sleep; actual sleeping through it; general loss of sleep associated with waking up earlier; cats do not seem in favor of it; I cough harder but get less up. Real morning airway clearance still happens in the shower best (for me) with the steam; my diaphragm/abdomen gets sore more often and more easily from this rougher coughing; morning workouts rule out breakfast by increasing my morning nausea; I don't get as clear of an idea of my O2 needs because my O2 is significantly worse upon waking, gets better when up and about.

Upsides: Lungs do clear better during shower; lungs are clearer for the start of the work day; Workout is done so I feel like a superwoman all day thinking, "I worked out at 5:30, what did YOU do today?!"; general bragging rights; its cooler out in the morning; if I get in the rhythm I can commit to it 100% No schedule conflicts with the ass-crack of morning.

Tell me this, bloggy readers, when do you exercise?
***THIS JUST IN! Casey wants to know too!!!*** Click Here

CG

Thursday, July 16, 2009

"And on the seventh day . . . "


"And on the seventh day . . ."

Cystic Gal took a nap.

It was just the day before yesterday that I wrote The Vow of the Cardio, and only yesterday that I revised it. Yesterday. The seventh day that never was. My entire reason for making The Vow of the Cardio was to break my bad habit of taking a day off from formal exercise. I do this every week. It is like a mental block or a secret desire to complain the next day or something. It is ridiculous. It is inexcusable. Yesterday, I DID NOT WORK OUT.

Yesterday: I sat in the sun for 1 hour, 15 minutes while reading; I took at 2 hour long nap; I fooled around with my blog here and there and all day long for certainly an hour or so total; I talked on the phone a lot; I made a contract for a gig coming up; I started the process on getting another contract for my new colleague; I had my friend T-Money over and even actively thought, "it is a perfect amount of time to work out, while she drives over!" BUT DID I? OH NO!

And my lungs were double mad at me for this decision. They were wheezy and making a crinkly noise by the time I went to bed despite my airway clearance. They were an f-in' nightmare this morning. They were glarpy and glorpy during rehearsal. They gave me shit during airway clearance today. They were pissed, and I could not blame them. My lungs can be real bitches when they've been ignored and lied to.

Of course, there is another side to this. Looking over my list of the Top Ten Reasons Not To Exercise With CF, I left one off, which I will now add. My rationalization yesterday is that my life comes first. Meaning, my social-spiritual-emotional-artistic LIFE. My LIFE comes before my health. I stay healthy so that I can live my Life. I don't live my Life to prove that I can stay healthy. This, I know, is something that not all CFers, CF parents, or CF caregivers (medical or non), agree with. They would say, "You have to stay healthy so that you can live your life," which on the surface, sounds true. Well, it is true. You have to physically stay alive so that you can continue any kind of a living breathing life whatsoever. However, my life with CF is about choices, grande sweeping conceptual ones like "My Life comes before my Health," and smaller ones like "I really want to spend time laughing with my friend tonight. I'm really enjoying this. I don't want her to go home yet," or the opposite, "I'm not going to that birthday party. I simply cannot. I have to stay home and take care of myself tonight."

The way that I take care of myself on one day may mean to stay up late hysterically laughing with my girl friend talking about boys (and yes, I'm older than 15), and some other day it may mean skipping out on an event I was really looking forward to, in order to work out and do meds and really push the airway clearance.

I will never be the CF patient who chooses only the second option. I will always live my Life first.

This got me thinking, how did I get here? Why do I feel so strongly about the Life element in my . . . well, life? Here is the first chapter of Cystic Gal: the future book or something.

Until my mid-teens I was under the care of physician Dr. Lewis E. Gibson and his nurse, M-huggy. His name is probably the only real doctor's name that I'll use on this blog, and I use it now because he passed away in 2008 and I know inexplicably that I will only say complimentary things about him. He was a pioneer in CF medicine for a lot of reasons, including his invention of the sweat test used to diagnose CF, and his study of many of the common practices in CF care including the use of mist tents on patients in the 1970s and prior years. During the time that he practiced medicine, he saw the expected age of mortality for CF patient go from younger than ten years old, to older than thirty. CF went from a "childhood disease" to a "genetic disease affecting 30,000 adults and children nationwide." I think of his mind as an extraordinary timeline filled with data, pictures of patients, difficult conversations with patients, patient conversations, wellness, illness, death and Life in CF with its successes, failures, and choices made in CF care.

A side note: Dr. Gibson often told the same stories over and over again. You will know a patient of Dr. Gibson's if you can get his account of where "the shot heard 'round the world" was fired from. He told me on more than one occasion that his motivation for studying the long-term use of mist tents in CF was not really motivated by the moisture levels in the lungs and bacteria growth and all that, but that, "it just didn't seem right anyhow," and "practices like that can do a lot of damage to the patient's sense of normalcy." He was interested in getting rid of the mist tents because they were terrifying to look at and made the kids feel like they were dieing. Oh, and they were actually helping grow the Yukkies. That too. Dr. Gibson cared about how the science served the patient, not just how the patient reacted to the "best science."

When Dr. Gibson retired, he wrote a poignant yet professional, emotional yet instructive letter to families and patients under his care. Though I don't know for sure (and I'm sure somebody could look it up), I doubt his practice had a great attrition of patients from year to year. He cared for me for 15 years from the day he met me at 6 months old and wrote, "Baby [CG] in good spirits reporting her chief complaint to be recent diagnosis of Cystic Fibrosis," until his retirement party in 1995. He cared for my sister for approximately 18 years until she left for college. He cared for my God brother until his lung transplant in 1994. My family and others made extraordinary sacrifices to remain under his direct care.

In his letter to families, after approximately fifty years of crafting, evaluating and revising CF care in his centers and for others, Dr. Gibson wrote a letter that reminded his patients to put their Lives, their families, their relationships, their happiness first. I am paraphrasing now, but will revise later - he said that care should never become so costly, so time-consuming, or so personally overwhelming to patients or families, that patients are not able to enjoy life.

I will always put my Life first because I want to enjoy Life.
My Life keeps me healthy.

(which is not, truly, the reason that I did not exercise yesterday. I did not exercise yesterday because I was being a bloggy, tanning, phone chatting brat. But I think this line of thought that I began here, is more valuable than that particular Epiphany.)

Goodnight. From Day One,
CG

Tuesday, July 14, 2009

The Vow of the Cardio-ORIGINAL


The Vow of the Cardio.

NOTE: This version of the Vow will remain published, but revisions will be posted here, as I move forward with my progress and thoughts on exercise!

You, too, may take this vow. Or you may make your own. It is a promise between you and your lungs.

1. I vow to provide my Lungs with daily exercise so that they can serve me to the best of their ability.

2. I vow to exercise my Lungs for a non-negotiable minimum of 30 sustained minutes every day including during religious holidays, family events, unforeseen circumstances, and regardless of the time of day, the status of my Tummy, and even when I am very sick unless my doctor actually tells me directly that I may not exercise.

3. I promise my Lungs that their oxygen needs will be met. To ensure that my Lungs will believe me, I will call my home health company ahead of time to prepare for travel, holidays, and changes to my routine. I will program the home health 02 company's name into my cell and set reminders to call them for supplies.

4. I will not fool my Lungs that other forms of non-sustained exercise can take the place of my Cardio/aerobic time. I will use other forms of exercise to compliment my aerobic activity, not replace it.

5. I will monitor my Lungs' ability to use O2, and the status of their dearest friend, the Heart, by checking my O2 SAT and pulse. I will work to my full potential during my workouts by steadily increasing the difficulty as I track my improvements. I will expect my Lungs to work to their full potential, but I will not get mad at them if they have a bad day, week, month, or year.

6. I will set goals for me and my Lungs, and when we complete them, I will reward us handsomely. The goals I set will not be based on how "hard" I work out, but how often, as I cannot truly control how fast I can go or how long I can go on a given day.

7. I promise to keep exercising my Lungs during a health setback- especially during a health setback. My Lungs are sad then and need the pick-me-up endorphins.

8. I will use The Vow of the Cardio to defeat The Demonic Yukkies and their ever-increasing liege, and drive them out of my Lungs forever.

9. I promise to review my Vow regularly, both alone with my Lungs, and with my physician, to make changes as needed.

10. I promise my Lungs that I will be honest with my Readers about my adherence to The Vow.

Make you own ten-point "Vow of the Cardio" today! Don't make YOUR Lungs say, "What have you done for ME lately?"

In an upcoming post, "The Lung Agreements," or what your lungs promise to do for you.

-CG

Friday, July 10, 2009

Top Ten Excuses Not To Exercise with CF (and why they are crap)

DISCLAIMERS: 1) I am not a doctor. At all. I have two degrees in the arts. Half the time I don't even believe in Western Medicine.

2) I am teaching young children this week. As a result, I do not use any bad language or even frown much all day. This leads me to swear a lot at night. I don't know why, but it's true. The below post has some cursin' in it.


Top Ten Excuses Not To Exercise with CF

1. I can't exercise on an empty stomach, and I haven't eaten something in at least . . . ten minutes.

2. I just ate so many calories, I can't exercise NOW! My tummy may start to hurt at any moment. I must lay down and wait for it to start.

3. I better not burn too many calories. I'm trying to gain weight. I will eat this treat instead of working out. All the better!

4. I will have more energy to exercise after my nap.

5. I walked around so much at work today. And that is extra hard for me, since my lungs are broken and all.

6. My oxygen is so low today, I can't exercise. It might kill me dead.

7. My oxygen is super great today, my lungs must be nice and open already! Good job, me. Time for a nap.

8.The gym has so many germs. I can't go there September through March.

9. It is lonely to work out alone at home. It depresses me to think of it. If I get depressed, that is surely bad for me, too, right?! I must avoid it and all its possible causes.

10. Remember that hemoptysis in 2005? That was horrible. Don't want that to happen again. Better not do anything too crazy, today, July 10, 2009. Better take some Vitamin K and take it easy.

If The Top Ten Reasons Not to Exercise with CF did not address your own reason, maybe your reason is more serious. More important. More personal. For this, See my post on REASON #11 .

Why These Excuses Are Crap

1. Eat a power bar and suck it up. You can eat all you want in just thirty minutes (or so.) If CFers avoiding doing things every time they felt a bizarro hunger pang, nothing would ever get done. Ever. The CF world would stop turning while we all ate a Snickers. Learn to pack some goddamn snacks already.

2. Thinking about possible things that can go wrong with your body in the future is not a good reason to not exercise, not take a job you want, not date a boy/girl, or just about anything. I mean, jeeez, worry about all the things that are CURRENTLY wrong with your body and leave the future to the psychics (at statcounter.com).

3. Exercise will make you super hungry. You will eat more calories than you burn away because you will be craving craving craving foods when you're done and the next day. If not, drink an Ensure/Boost/ScandiBLAH and once again, suck it up.

4. There is no actual evidence that napping leads to increased exercise. Sorry, folks. Exercising, however, will make you sleep better at night so you will be less inclined to feel like you really need a nap during the day.

5. While your lungs might be "broken," they are not yet broken down. You need to keep driving that "1980's bitchin' Camaro" set of lungs around the block. And around the block. And around the block. For at least 30 minutes.

6. If you know your oxygen SATurations are low, it means you monitor your SATs, which probably means you have supplemental oxygen. So crank that shit to 4L and get off your ass.

7. If your SATs are great today it probably means that you exercised yesterday. Wouldn't it be great to have great SATs tomorrow, too? Plus, the Demonic Yukkies in your lungs don't remember that you exercised yesterday. They go ahead and continue their mighty wrath ignoring your exercise goals. You must beat them down with the Vow of the Cardio. (more on this, the Vow, in upcoming posts.)

8. Okay okay okay. The gym has germs. You have choices: invest in a sturdy piece of home exercise equipment; take the workout outdoors (yikes!); rent some good cardio DVDs or start to TIVO the exercise channel; or get the f over it, sanitize your hands, and go to the gym. You must make a choice.

9. It is not really lonely to work out alone. You can cough up the Demonic Yukkies and look like shit and play Justin Timberlake, or Meatloaf, or whatever your secret workout music is. Without the damn earbuds.

10. Similar to answer 2 above, thinking about all of the things that have gone wrong with your body in the past is not a good reason to not exercise. Continue a reasonable level of worry over all the things that are surely CURRENTLY wrong with your body, which might even lead you to crave exercise, and leave the past in your Hello Kitty Diary.

If The Top Ten Reasons Not to Exercise with CF did not address your own reason, maybe your reason is more serious. More important. More personal. For this, See my post on REASON #11 .

Monday, July 6, 2009

Dear Dr. U-Bird^

Dear Dr. U-Bird, Dr. B-Bird, and even Dr. G-Bird,

If there were a Cinnabon in Boston, I'd be fatter.

Next study to fund: A Cinnabon a day keeps the Ensures away. Look into it.

Love, Cystic Gal

PS. More tomorrow, loyal readers. I'm tired after a day back in the rehearsal room!! And my voice is tired, too! Plus, just started back on TOBI 2x day, which is not great for the chords. They're stripped down from all the talkin and the inhalin' and the chem chem chemicals going over 'em.

To gargle, to sleep, to dream, to wake, to teach.

Dramatic enough for you?
cg

Saturday, July 4, 2009

Saturday, In the Park . . . I think it was the 4th of July-y.


Happy Independence Day, U.S. of A! I have never been more proud to be an American than this year. I have never been more politically invested than this year (barring, perhaps, a year in middle school where I was really into politics which faded when I met J-hottie^, my first love).

In the spirit of this 4th of July, Independence Day, and in the spirit of this blog, "Cystic Gal," I would like to reflect upon the ways that CF has made me a more independent person, both when I was growing up, and today.

As a first point, I know that I am empowered over my body, which contributes to my Independence as a person, a woman, an artist, even dare-I-say-it, lover. From a very young age, I have felt this empowerment over my body which paused only for about 6 months in middle school while my breasts grew. This great empowered feeling is mostly a blessing, but as I grow into later stages of my illness, it is also, I find, a curse. I believe that I am empowered over my body largely because of CF.

I have been thinking on this over the past two days, as I read my friend Kathy Rooney's book, _Live Nude Girl: My Life as an Object_, in which Kathy reflects, as you can imagine from reading the title, about her upbringing and her world's dealings with her body. Though the book is focused on Rooney's work as a nude artists' model, the book analyzes other nude and naked means of employment. (If you are wondering what the difference is between "nude" and "naked," you should certainly read her book.) Assuming you have not read her book, though certainly some of my readers have, Rooney writes of the many messages she received about her body, like we all do, from her parents, her siblings, the "so-called slutty neighborhood girl," her friends, and the opposite sex in general.

I was stuck stuck stuck on this quote, the one above, about the "so-called slutty neighborhood girl," in that I was recently caught in a conversation or five about a friend's abhorrence that her son was dating THAT VERY GIRL at [...] school [...]. THAT GIRL, you know, "the slutty one." Now, my friend never actually said the word "slut" when talking about this girl. But it was, I felt, implied by the other things said about the girl. Perhaps I was influenced to hear this by the fact that other friends went ahead and said it - "slutty" from the comfort of their distance from the relationship itself. Torn between my feelings of confusion that a friend would judge another woman, well . . . girl, so openly, and understanding her very visceral concern for her son's well-being, I was dumbfounded trying to think of things to say to my friend.

I find it funny that every neighborhood, every school, every office has a "so-called slutty girl" that we are meant to be afraid of, titilated by, ashamed of, and sorry for at once. By describing as "so-called," Rooney admits "slutty" is just a distasteful label put on young girls who show too much leg, have breasts that are "too big" or who make out with boys "too early" on a comparative basis with their communities. However, Rooney's description of this girl and my recent ponderings over my friend's parental conundrum had me thinking, "Why is there always only ONE 'slutty' girl?" As far as I know, she always has friends, this slut-girl, and they always dress like her, and make out with boys like she does. Some of them are even blessed with the same great rack. [...] Yet there is always one leader of the pack that is The Slutty Girl you know.

The thing that The One Slutty Girl has that members of her harem don't is empowerment over her body. Actually, the MOST empowerment over her body among the girls. This is why there is only one girl, she has these features most of all, though others possess them. She wears the shorter shorts, and the revealing tops and she makes out with the boys "further" than she "should" because she is trying to figure out something about her body, the body that empowers her to control the boy she's with, control even her friends, perhaps control herself. The Slutty Girl IS her body, or she would like you to think that.

Sure, The Slutty Girl might have secretly low self-esteem, she might write sad things in her journal at night or be a coke-head on the side for all we know - or she might watch the History Channel at night and be into existential poetry. We do not know. All we do know about The Slutty Girl is that she doesn't mind if we look at her, and she doesn't worry about hiding her boobs every time she bends over, and she probably won't grow up to have sex with the light off. Whatever's going on with The Slutty Girl's inner-workings, she owns that body of hers and she's using it for something, whether sexual in nature or not. She owns her body in a fierce, independent, arrogant, flaunty, go-ahead-and-look-at-me-and-screw-you-for-looking kind of way that the other girls around her, try as they may, do not have. This makes her The Slutty Girl while the others are just regular "sluts" in the eyes of those that behold them and the mouths of the neighbors gossiping.

What does this have to do with CF? Hard to tackle in my remaining 12 minutes of bloggy time tonight. (That's right, blog readers, I'm trying to limit myself to only 1 hour of bloggy time per day! And that includes stat updates and viewer questions!! YIKES!)

[...] I can say that I [...] became aware of my body as something that needed to be used for specific purposes at a much earlier age than other people - men or women. I think that most people don't think of the usefulness of their body until at least adolescence. By "usefulness" I mean the active posing of questions regarding the body's ability to complete a task for the mind, as in "Can my body do this? Can my body do that? What must I do to my body so that I can eventually do that thing-I-wanna-do? Can I run? Can I swim? Can I hold my breath as long as her?"

Non-CF children grow up and they do or they don't accomplish tasks with their little bodies. These accomplishments are inherent. They are learned through observation. They are mostly unconscious. CF children grow up and they learn to-do-to their little bodies. It is taught, it is rarely observed, it is not inherent, unconscious, or even natural: Put the big pills in your mouth and swallow: to-do-to-your-stomach what your stomach can't-do, digest; Inhale the mist into your lungs deeply: to-do-to-your-lungs something they can't-do alone, fight disease; Cough out the secretions: to-do-to-your-lungs/trachea/mouth/stomach what you'll rarely see another human do: force expectorate (to remove disease).

CF children learn very early something that others don't learn for many years, that their body is something that can be forced, coddled, calmed, assaulted, overwhelmed, and freed - and that sometimes the most painful acts against them are the best for their bodies, though sometimes, there are just painful acts. It's a very tangled message that forces a child, most hopefully in my opinion, to assert This Is My Body- a deep and powerful understanding that changes the way a child views her/himself and the other bodies s/he interacts with.

In closing as I see the clock . . .

CF children, The Slutty Girl and even, dare I say, Kathleen Rooney and the artists' models she writes of, have one shared understanding: As soon as they learned to empower themselves into their own bodies, to own their own bodies, to objectify their own bodies and to use them as freely as the world around them would - to feel better, to feel really good, to get reactions, to get sex, to be admired, to become art, to get money - whatever the use - as soon as they learned to use their own bodies in the way that the world used them, they learned that this self-empowerment was very, very bad.

More on this topic in future days. My bloggy time is up!

HAPPY 4TH!!

CG


Monday, June 15, 2009

The Morning After

So I shared my first rant on "Cystic Gal" yesterday, just as I gained my first four followers: three that I know personally; one that I do not. Almost immediately, I felt so bad about my rant. I thought, oh great, now those four are never going to read my blog again. I mean, who wants a downer? Though I tried to share some humorous words and I found my chosen pseudonyms to be funny as well (T-Money in particular is pleased with her pseudonym IRL in real life), I thought
oh me oh my I have started on the wrong foot
and
why am I so angry about my disease right now?
I used to be so much more worldly and global and kumbaya in my thinking. But not this year, or last year for that matter. These years I've mostly been angry.
WHY?
Then, this morning, when on the phone with my sweetie, I had to hang up on him. I had the worst coughing fit that I have had in months. It lasted minutes and minutes (which might not sound long but a minute is LONG when you can't...uh...breathe) and was the kind where you almost puke and you cry a little bit and you get all sweaty and maybe you say the F word a few times and your friend is on the phone on mute thinking maybe you passed out on the bathroom floor which adds to the drama.
And I was really really angry.
I probably won't remember this coughing fit a few months from now, the next time I ask myself:
Why am I so angry about my disease?
More later...
CG

New Blog and Site

Yo Old Friends!  It's me, Beth Peters / CysticGal  / the artist actually known as Mary ElizaBeth Peters . I am moving on from this bl...