Alter Everything

Day 173: My Big Blue Badge

Awww...the disabled parking pass.  Not exactly a little girl's dream.

(insert Monster.com commercial here)

"When I grow up, I want unreliable legs, painful hips, and stiff knees/feet so I can get preferred lot placement."

I cried when it came in the mail today; not because I was happy or excited, but because of the date at the bottom...2014.  Holy Crap. Please tell me I won't be feeling like this three years from now.

Reluctantly, I hung it on my rear view mirror as I made my way to the sauna.  At first, it made me sad. But, when I left, I was grateful. 

As I crawled back into the truck, I thought of all of the things I DON'T do anymore because of pain, lack of energy, or fear of collapsing.

-I don't go to the library
-I don't run to Target
-I don't visit Thrift Stores or Antique Shops
-I wouldn't dream of driving to Disney or SeaWorld.
-I didn't go the Fringe Festival this weekend.
-I don't volunteer
-Heck, I really don't go anywhere by myself anymore (except the gym and grocery store -- all within blocks of my house).

When I think about it, it's amazing how much of my life is now dictated by convenience or comfort.  Maybe having this pass isn't such a bad thing?? Maybe it will encourage me to get out and do more?? Maybe it will give me the confidence I need to venture a little further from home? Maybe I can start to live a little again?

If nothing else, it will make things a little easier. And, for that, I am eternally grateful.

Altered Today: Accentuating the positive, preparing for tomorrow's appointment, another four hour nap.

Day 170: Me In A Crooked Line

There are a lot of things I could talk about today:

 time with friends

stupid things people say to sick people

the beautiful dinner my husband made me

exhaustion

how sad I get when someone asks how I am feeling 

worry

next Tuesday's doctor's appointment

test results

my changing taste buds

money

depression

religion

how much I miss my life


No words do it justice, but this song says it all.
Hope you are well.

Altered Today: Out of the house, buying gifts off the registry, store bought coconut ice cream

Day 141.5: Don't Let It Get The Best Of You--Keep Fighting

Day 121: S.O.S.

 

Well, the day's not off to a good start. Sleep didn't come easily last night and, when it did, it was filled with horrible/ironic dreams; like being trapped in a Hyperbaric Chamber running out of oxygen (think it's time to stop medical research before bed??).

Anyway, now on top of my normal crappy, sick/achy/flu-like/pain/virusy symptoms,  I feel like I have some strange hangover..which makes the fight I had with my husband this morning even more upsetting. 

It started when the alarm went off, which instantly had me up and worried about the dog.  Hubby was still tired (probably from me keeping him up all night) and I felt exhausted (for obvious reasons).

I rolled over, asked my husband to let the dog out (which he didn't think needed out yet), but obsessive me couldn't relax knowing she was in there so I kept asking.

Me (whiny): Baby, can you let Betsy out? I really need to go back to sleep.
Him (sleepy): She's fine. I'll get her in a 1/2 hour.
Me (insistent): But baby, I can't sleep if I'm worried about her, can you please just let her out? I really need to sleep.
Him (louder): She's fine. I'll do it in a little bit
Me (getting more obsessed): She's not fine. PLEASE...I just need to sleep.
Him (more annoyed now than sleepy):  I need to sleep too. What about me?
Me (now totally upset, awake, sick, and righteous): Hrruuuumph! (insert noise of slamming door here).

It was not a pretty scene; also not one of my finer moments, but this is how it is when you have a life surrounded by illness.  On the one hand, you have me--a sick person--grappling for any moment of reprieve. On the other, you have him--a caregiver--struggling for the same.

They're different sides of the same boat: both sinking, both overloaded, and both desperately in need of rescue.  I love you, baby. I'm sorry I slammed the door this morning and that I didn't trust you to take care of things later.  I am also sorry you're feeling tired and overwhelmed. We'll get through this.

Altered Today: Seeing life from my husband's point of view, formally apologizing, going back to bed.

Day 112: We Can't All Come and Go By Bubble

  
Trailer for the Orlando production of Wicked at the Bob Carr

I remember when I first saw the musical Wicked with my friend Lorelie in Chicago.  I bought the CD after hearing Kristin Chenoweth perform Popular during an AMC preshow at the movie theatre.  Other than the song, I didn't know much about the show.  Only that it  was the story of the Wizard of Oz told from the Wicked Witch's perspective...something I had never even considered.

We gobbled mexican food at Frontera Grill, then hurried over to the theatre; hunkering down in the second row of the balcony behind a family armed with candied nuts and Twizzler wrappers. Despite the scrunching of plastic and rustling of paper, the show was good (with a capital "G"); for weeks afterwards I twirled and sang around the house, regretting my decision to leave music school just two years short of graduation.

The performances were amazing; even better were the themes. Central to the story is a question rasied by Glinda: "Are people born Wicked? Or do they have Wickedness thrust upon them?"  If you haven't seen the show--don't worry--I won't spoil it for you.  I will say, however, that after watching it twice, listening to the CD more than 1,000 times, and living a very good and very bad 40-year existence,  things aren't always what they seem.

Which got me thinking...would the message of Wicked change...viewed through older eyes or eyes of illness?

I was hoping to grab on to some deep metaphor that would make coping with disease easier, or make pain seem less important, or find some inspirational way to map Lyme onto the witch (after all, she is green).  Instead, despite an amazing YouTube performance of Defying Gravity, I think mainly the same two things:  1) Man, that's really good.  2) I miss music.

Bottom line?  It's true, as Glinda points out, "It's dreadful, it is, to have a house fall on you..."  But monkeys, twisters, and gravity are unavoidable. So, you might as well rise above it, defy it, and fly.

Altered Today: Thoughts about how I will view myself and this period of my life in the future.  "Is one a crusader - or ruthless invader? It's all in which label is able to persist." --The Wizard

Day 74: I Hope You Dance

 

If you've ever been to a bad 80's wedding, no doubt you've limboed.  You stood in line.  You listened to questionable music.  You followed others while you marched around in circles--just waiting for your turn to bend over backwards, scootch under a tiny little pole, and hopefully make it out the other side without landing flat on your back.

The key to the game is simple:  Be flexible enough to make it, but strong enough not to break. 

It's also a good metaphor for life (and love, and illness...) and everything in between.

The dictionary defines limbo as:

a) a region on the border of hell or heaven
b) a place or state of oblivion to which persons or things are regarded as being relegated when cast aside, forgotten, past, or out of date
c) an intermediate, transitional, or midway state or place
d) a place or state of imprisonment or confinement
e) a state of uncertainty or waiting
f) a dance

It can be a blessing or a curse.  A fun game or a forced obligation. The gateway to pain or the start of a new adventure. 

It's all in how you look at it.

Tonight, as I prepare for tomorrow's doctor's visit and anticipated test results, I'm thinking a lot about my attitude. It's been a long five months and I'm anxious for answers.  It's also possible that whatever answers I receive will only lead to more questions.

Whatever the news, I'm choosing to dance (...even if I don't pick the music).  If you're in Limbo, I hope you will too.  In the meantime, here's a Lullaby for a Stormy Night.

Altered Today: Patience, Attitude, Dread, Thoughts about Sickness.

Day 72: From Me to Me

Poppies by  Dan  via FreeDigitalPhotos.net

 

You know they never really owned you.
You just carried them around. 
And one day you put 'em down and found your hands were free.
-Ani DiFranco

The deed's been done. The letter's been sent.  I have officially ended a 5+ year relationship that should have ended long ago.

Past the fear and the doubt, I know I'm doing the right thing. Still, I can't help but look for reassurance: some sign that I'll make it, some consolation that I'm not crazy, some hope that everything really will be ok. 

With no one to turn to but my dog and my artwork, tonight I'm going to an unusual source for inspiration:  from me to me. Below is the letter that I wrote to myself (actually to all of us).  Feel free to alter the words...as needed.

Dear ________ (insert your name here),

I know you might not believe me when I say this, but you’re still in there.  Despite the doubts, despite the concerns, despite the pain, despite the “am I crazy?” conversation, there you are.  Tough. Strong. Resilient.  Capable.

You have so much to give to this world.  Don’t let fear and illness stop you.  You are brilliant beyond measure and have many, many more amazing things to do in your lifetime.

Have you forgotten?

Have you forgotten how you trounced around foreign cities and built a life without knowing a soul?

Have you forgotten how you survived so many unspeakable moments where others would have shriveled up and died?

Have you forgotten how many people love you and appreciate you...right now, just as you are?

Have you forgotten that everything wonderful thing in your life was born out of not knowing and possibility?

Have you forgotten that you created this opportunity and that you can create others just as easily?

Have you forgotten that all is well and you’re ok?

Have you forgotten that you must be willing to let go of the life you have planned to have the life that is waiting for you?

Have you forgotten that I believe in you and you can count on me?

Make room for Love. Make room for Joy. Make room for Miracles.  And, if that doesn’t work, watch this video.

I love you with all of my heart,

Kathy

Altered Today: What I Say to Myself

Day 62 1/2: For No Reason Except It Reminds Me of You

 

Day 40: May I Suggest

Susan Werner and Red Molly

If you've been reading my blog, you've probably noticed: lately I've been feeling a little sorry for myself.  Although I've tried to think positive, I've been bummed about not feeling well.  And, more than anything, I have been frustrated that a)Nobody seems to have any answers and b)Life seems to be on hold in the process.

I've tried lots of things to alter my attitude: artwork, time with friends, meditation, being proactive, focusing on others (anything to distract myself, solve what's happening, or forget what's going on).  Today, though, I had a different thought:  "What if today, instead of resisting what's happening with my health, I included it and enjoyed the day anyway?"

Suddenly, I was brought back to when my husband's father was dying with prostate cancer.  He was in a nursing home, but we shared some of our best moments there.  Between the IVs, Jello, doctors, and nurses, we sang songs, played games, and shared ourselves.  Each day was a gift and we were well aware it might be the last one we had.

Today, as I thought of his stories and laughter, I couldn't help but smile.   Like the angel he was, he must have sensed I needed a lift. So, through a series of coincidences (or divine intervention), he sent me this message in a song.  I hope you'll value it as much as I did.

Altered Today: Everything

Day 39: Pregnant Women are Smug

I'll never forget when my friend Shea called to tell me she was pregnant.  I had recently been inundated with friends having little ones and was so happy to see a "non mommy" friend on the caller ID.

Me:  Oh my God, Shea. I'm so glad it's you.   It seems like everyone I know lately is busy with their baby or pregnant with a baby.  It's like no one can have a normal conversation anymore without talking about kids.  Want to go to lunch?
Her:   Uhhh...actually I was calling cause I wanted to tell you something...
(Insert foot in mouth here).

Don't get me wrong.  It's not that I don't like babies or mothers or motherhood.  I'm just not baby crazy and I definitely don't speak "baby lingo."  Goo, goo, gah, gah....UUUGH!  Babies are cute, but they're smelly and sticky.  And new mommies are fine, but they're consumed and unavailable. So, other than complain, what's a married, don't yet have a baby/want to have a baby, miss their girlfriends, but not baby crazy girl to do? 

A)  Go hang out with new mommies and get to know the little rugrats.
B)  Laugh with new mommies (and potential new mommies) about what it's like to hang out with them.

So, I did both today (a and b).  Which led to this video (my friend Brian played it for me after I said if I do get pregnant that I want a girl/not a boy...).



We all had a great time (pregnant friend, new mom, friend's husband, and two kids).  I even let the little one slobber all over my face (gross, but not bad).  And the older one repeatedly challenged me to a hugging match (cute for a boy).  Maybe being smug and consumed is not such a bad thing.

Altered Today: Thoughts on Boys, Pregnant Women, New Moms, Mood