"If I Were In Charge of the World"

When I was eight, my mom bought me a book for my birthday called If I Were in Charge of the World (and other worries). It was a children's poetry book that I still have. She wrote "To my little girl, who worries so much," and she put a heart sticker on the inside, too.

My mom called me tonight and reminded me that I have always been a person who gets most stressed when I have too much free time, or when my schedule is unpredictable. I have always been this way, since I was very young.

I remember that when I was a kid, I would also look at the calendar in the kitchen to figure out when summer would be over, because I actually did not like summertime that much.

This makes me wonder if we ever really change our ways.

This weekend, I had to surprise and wonderful evenings. The first night, I went to Thai food with my dear friend and then we went to a bar near the Symphony and might have secretly made fun of Symphony people. Secretly. The second night, I went out for Italian food with another friend, and then we went to the grocery store: my favorite thing!

Sidenote: Going to the grocery store or CVS on a weekend night, the later the better, is my favorite thing because the store is usually waaaay less crowded and you feel like some sort of domestic goddess or saint just being in the place. And weird things happen, like tonight, a man sliced up a mango for me to eat. LOVELY!


I also slept 'til at least noon today. YAY.

So I wonder, if I work really hard, I'll even admit - I work too hard - due to my bizarre obsessive work ethic and also my apparent duel career - am I able to balance this by resting "hard?" At my core, I am a poor mult-tasker. I like to work on one thing or aspect with complete dedication, and focus on nothing else. If I am "relaxing," I also like to do that fully.

Today I accomplished...nothing. One load of laundry but ... otherwise, nothing. Isn't that good? Or is it bad?

My mom said, "I just think you have a system that makes your life work and if you don't get to keep that system, then none of it works." Perhaps she is right.

Hmm. These are my random thoughts about making life work. Thanks, mommy!

Flip Flap

from hyperbole and a half: 

Thanks so much to all of my readers and new readers who messaged me about my last post. It is interesting that when I post poetry drafts, they usually get a bigger response that formal poems that I think are "done." The feedback also gave me a chance to read some of your similar posts, either those that stemmed from mine, or older one that you chose to share with me - about the issue of post-transplant and return to work and relationships, and general identity crisis blah blah. 


Here are some of the things I have come up with in my two days long reflection:

1. I am feeling a little bit better but it has come to my attention... ahem...wonder if you are reading... that perhaps I'm jumping into both "work" and work a little too much right now, and that is making these issues worse. I wonder if work is making them better. I wonder a lot of things. 
2. I like to be busy. I like to have lots of projects, and I have trouble turning down things that I think might be either meaningful or fun. I am working on this. I eventually need to pick one career over another, I realize this. 
3. I like to be alone. Although when I'm around people, I am very extroverted, I would gladly stay home and work on a project or watch tv or nap over most activities of daily living. I am a person that likes to be alone and hates meeting men for a variety of reasons, who also likes sex (uh..with men...just to clarify) and cuddling. Some women like being single for a long time and can just give up S and C (sex and cuddling). I am not one of these people. I eventually need to pick a lifestyle, I realize this. 
4. I liked being skinny. Although I'm not really any other person's definition of "not skinny" right now, I really don't like my new bod as much as I liked my old one. I  know that my new body is much healthier than my old body, but I would really like my flat stomach back. That is ridiculously superficial. I realize this.
5. I want to get another tattoo. All of you Duke folks are getting them, and you prompted me to ask a few of my medical team people about this today. Their responses will make for another post. There are stupid health risks with most of what my lifestyle is, I realize this. 
6. I have a lot of anxiety. Some of it is logical and can be explained pretty easily by looking at the history of my life and body. Some of it is illogical and more of a physical response to some sort of biochemical psychological yadda yadda. I realize this. When it gets worse, it just gets worse, and really all I can do is wait for it to get better. I do like it when it's better, just for the record.
7. I like to be in charge of things. I didn't really realize this totally until my bff T-Money pointed out that she never saw me so nervous as when we went to Baby Class together. I wanted to teach the class. I know nothing about babies, but I'd rather teach the Baby Class than meet the strangers with their babies. I can't go through life and be in charge of ALL THE THINGS, I realize this 

Hmm. These are the things I'm thinking about lately. 
Thanks for reading the update. And for reading in general. Oh, and I'm tweeting again. @bethpeters


bbfn,
cg

In memory and celebration, Brian Sercus

Brian, I was honored to know you so briefly at such an important time in our lives' journey. You changed me forever and I will never forget you, never stop thinking of you, never forget what you told me.


I am drawn to stay up all night writing a letter to Brian, my friend, my brief friend, who I knew not as well as those who mourn him properly. I am mixed with emotions. I wonder how much of my current emotional state is delayed emotions from the last 18 months that I spent either struggling to live or struggling to prove that I was "living" - and now that I am clearly doing both - many emotions are releasing.


I wonder what is delayed and what is real. 


Today, a new transplant patient's mother writes to me, a woman I do not know, about her son who I do not know, [he writes this,]:


>> Swollen
>> Tired
>> No appetite
>> Sad
>> Trying to process the death of the donor
>> Bruised
>> Stomach aches
>> Dealing with a lifetime of "sick kid mentality"
>> Not sleeping well
>> Blood clots in both arms
>> Weak


And I wonder about one word: sad. I wonder how patients ever really recover from the sadness they feel preparing for either transplant or death, how patients really are unable to share the sadness they feel with the world because they are meant to be so grateful and in this basic world that thinks of 1 dimensional emotions: grateful is happy - I wonder how anyone gets through it, and I wonder how I get through it. 

I discovered a poem tonight that I wrote before my transplant when I was quite ill. I must have been somewhat altered when I wrote it, as I never followd up and edited it, or did anytihng with it at all. It was called My Body Remembers. Here it is in, it's roughest form. 


This is what I wrote:

My body remembers that I am a dancer, an actress, a teacher, a climber of trees. 

My arms remember that I hug soft and kind, that I bow to the moon, that I reach for my dreams.

My body remembers that I ...

My body remembers that I am a dancer, an actress, a teacher, a singer, a climber of trees.

My body remembers that I am a shouter, a runner, a lover, a woman, a beauty, a beautiful catch. My body remembers that I am strong, and a fighter, that I'm rugged though tiny.

That I like to win.

I will be okay after my transplant, because though I am tired now, my body remembers a time when I wasn't.

My body remembers that I am a dancer, a swimmer

an actress

a singer.

My body remembers every moment when I felt free.

Walking home from school most days of 6th grade, my body learned to go one step at a time to keep up with the others.

Swimming lap after lap after lap on the swim team, and sometimes I won, my body learned to keep pull pull pulling the water behind you to get to the front.

Training my diaphragm to breath deep, deep, deep and strong and push big air out of my small small lungs and have the loudest voice, proudest voice of most young actors, my body learned to speak up.

My body remembers to walk proudly, to pull forward, to breathe deep.

My body remembers that my legs are always strong even though my heart is sometimes weak.

Backstage, gulping down water in the wings because I sweat out too much out on the stage, my body remembers that I am a performer who thirsts to get back onstage.

Standing on my tip toes for minutes and minutes and minutes in a dancing pose for a movement exercise because my body remembers that I was a teeny tiny ballerina, a movement instructor, an image-theatre maker.

***

I only share this with you to illuminate some of my thought, some of the basic thoughts I was having at that time to try to remember my identity.


In the celebration of Brian, the beauty of his story, is that he NEVER forgot his. 

bp

Top Ten Totally Superficial Ways to Feel Better

Wow, I thought I looked better in that photo but it only the tiny kitten that looks better, and even she looks pretty miserable. Get it? Blind kitty "looks" miserable. HAHAHAH.

Today I took my staycation to a whole new level: Retail Therapy. Which I discovered was actually cheaper, per hour, than actual therapy, which really got my medical-spending, spreadsheet-building wheels turning.

Remember when I used to write lots of top ten lists?  Well, here is one.

Top Ten Totally Superficial Ways to Feel Better

1. Get a massage.

2. Get some sun, or if you are outlawed from any form of Vitamin D that doesn't come in a tiny blue capsule, congrats! You have CF, and you also can go sunless tanning. oooh.....


3. Shop for a new "little black dress."

4. Visit a totally girly store like the one I did, The Fairy Shoppe, in Boston. Buy something girly and fun.

5. Eat an ice cream. Yum!

6. Buy a piece of jewelry. I got new silver earrings with gold bases that will not make my ears itch. I will wear them everyday until I lose one.

7.  Buy a gift for someone. I bought a math-themed t-shirt for a math-themed friend.

8.  Get your nails done! OOOH, fancy.

9. Spend some time on a rooftop place in a pretty city and take in the yummy springtime air and surroundings. Pretend you are Snow White and chat with a bird, if one happens to come about.

10. Take yourself out for a hearty dinner and a martini or lemonade.

These tips may not make you feel completely better, but damn girl, you'll look good, and that is half the battle.

Goodnight,
cg

"Thanks, Joshy" or "I Spent My Hopes and Dreams at SuperTarget" (Thanks Katie)

This adorable pic will minimize the random tragic nature of this post 

and my current mindset. 

It has been a harder month that most in CF land, and I am not immune to this. It's been a particularly hard week for me, for no particular physical reason. And tonight, I read this:

http://www.welcometojoshland.com/2012/04/unknown.html#comment-form

which was posted by our good friend Josh at Joshland.  Josh does not usually post anything too dark or serious, and this post is a bit of both and it also has a sort of poetic brilliance about it that has inspired me to write a little tonight about my own feelings. Thanks, Josh.

So here is what's going on with me. As most of my readers know, I have pretty bad anxiety, and I dealt with it pretty well before my transplant and then even better for a while after my transplant. Lately, it's been much much worse. I think that I am now physically healthy enough to deal with a lot of the things I did not deal with, emotionally speaking, in the year before my transplant and the year after. I am finding myself getting upset over memories from things from that long ago, or even memories of things that happened to me or around me that I haven't thought of, at all, since they first happened.  And then I get all upset and can't stop until I sleep for a long time. I also think of things, or remember things, that I absolutely ignored or left to the side prior to my transplant and freakishly obsess if I can figure out a way to clean up those messes now- even though I don't really want to.

And, like Josh's post above, I am finding myself behind the pace of my peer group - to put it randomly in human development terms. In order to prepare for my transplant and sort of as necessary outcome of my failing health, I distanced myself from most if not all unhealthy people or relationships in my life. My physical and emotional state simply did not allow me to expend the energy that it took to keep negative people or behaviors around me.  However, now I find myself in a rather lonely place.

I don't want to share too much on here about my personal life, but suffice it to say that my romantic life is not going very well and I'm faced with a lot of the issues that a lot of other bloggers have written about, and that I published poems about earlier last year, with cf/transplant/child bearing/health choice making and etc combing with DATING? It's like, are you fucking kidding me? This is a drastic over simplification of the male-female situation for 30somethings in America, and I'm no sociologist, but suffice it say that a lot of men my age really only want to be in relationships IF they want to get married relatively soon SO THAT they can have children. So, great. Yes, that's a simple version and YES, men are just as complicated as women blah blah blah- but you know what I'm saying is true, and most of my male friends admit it. In the past two years, 3 of my ex boyfriends have gotten married and were upset that I did not attend their weddings. Can I again get a ARE YOU FUCKING KIDDING ME?

I feel like my professional life is going well, while my personal life is failing. It seems like my work life is an endless series of meetings, and that it seems like on any given day, I can call a meeting together and more people will attend it than my birthday party. Something is wrong with that. I don't even like meetings - so many humans in one room talking at once. Yikes.

Anyway, this post is rather incoherent but to say that I'm not having a particularly good time lately but that I have guilt in typing this out, because physically I am doing well (with the exception of a lot of fatigue that is mostly because of my busted thyroid) - so what do I have to complain about? I also wonder if my mind/body is used to spending periods of time not feeling well - not that I'm a hypochondriac but that some part of my brain is trained to coddle myself up in bed when I need to reset myself. Maybe that's good, maybe that's bad.

I am going to try to go to sleep now.
Goodnight,
cg

To blog or not to blog, that is the question

 Hello, Tiny Bloggy.

I am pretty sure that I have used that title before, perhaps even two times.

Lately, there have been a lot of transplantiversaries of a lot of my friends, and also, a share of sad events from our transplant community. Anniversaries of deaths, new diagnosis, etc. As these issues have cropped up, I realized that a lot of my bloggies from a couple of years ago don't blog anymore, or much anymore - and of course I am one of them. These non-bloggers.

A lot has been going on in my CF advocacy life this year, including speaking at a few events and starting to plan an event for my former/current CF center centered around THE POWER OF TWO movie that Ana and Isa made - all very good.

I have started a couple of non-health writing projects, I left one of the theatre companies I used to work for and have moved on to working for two others, and things have solidified a bit at my "day job" teaching including planning a new program for the summer. YAY.

My best friend is having a baby all on her own and we are so excited! I have the privilege of being her birthing partner, and I cannot wait for the experience. We took our first Birthing Class last week, and clearly I was the best "husband" in the place.

So, I wonder about a return to blogging. The pros to returning to blogging are thus:

1. Blogging is fun
2. Blogging is expressive.
3. Blogging connects me to lots of people at once  when there are times that I am too busy to keep up with it all.

The cons to blogging are these:

1. People tend to over analyze my blog and call me with random comments on it.
2. Since I'm back teaching now and my students are mostly stalkers, they may/may not read this.
3. Can I really commit to blogging nightly or weekly?

The reasons that I am pondering coming back aboard are that I am having a lot of post transplant issues, from a social/emotional/brainy perspective. My health has been mostly stellar (except that I blame every stomach problem I have on the fact that the new enzymes all blow), but I have more anxiety now than I did before my transplant. Hmm. Then again, I have more going on now than I did before my transplant.

Also, I like to have a venue upon which to publish pictures of my cat.

Thoughts?