Monday, January 28, 2013

Six Months of American Culture

Today, while driving to Redbox (a new American staple for renting DVDs and video games from street corners) I realized that Boyet has been in America for more than six months now. So we began discussing American culture.  I wanted to discover what he likes, what he doesn’t like, what’s been surprising and if anything has been downright shocking.

Before coming to America, Boyet had never:

played rock band,

01281b5ed52211e1b7ea22000a1cbb16_6
mowed a lawn,

46554cd62aa111e2afba123138190cf4_6 (1)
driven a car,

679531fa512411e2a98422000a9f1513_6
played in the snow,

e84d94fafacf11e18b9422000a1c9e12_6

worn a pumpkin on his head.

IMG_9002_1

or eaten a Girl Scout Cookie.

He had also never smelled a skunk.
skunk 

Now if you have never had the pleasure, there is no way I can describe it to you.  It’s a pleasure one must experience to fully enjoy.

 

But now he’s had some time to settle into American life and here are a few things he’s learned, Being in America offers a sense a freedom that, sadly, many other places don’t get the blessing of experiencing.  We can go shopping in the middle of the night. Yes, we have been to Wal-Mart at 3am. We have more than 300 religions with the largest majority being Christian.  The Catholic faith is the most popular among Christian religions.  Even Pagan, Wiccan and other religions can be found in America.  We can complain loudly about our government.  But the Dixie Chicks learned years ago that you shouldn’t do it on foreign soil if you want us to continue to spend our American dollars on your albums. We can work where we choose, go where we choose, wear whatever we choose, listen to whatever we choose, watch what we choose, etc. We are very blessed to have such amazing freedoms here. 

Boyet has come to understand that American society offers a level of convenience that can be found nowhere else on Earth.  Some would even go so far to say that we are spoiled. Most Americans don’t know what hunger truly is.  For the most part, we don’t understand poverty as our government offers dozens of programs to help those in need. We also have this strange attachment to the ‘nuclear’ family.  Elsewhere in the world, family means Mom, Dad, Siblings, Grandparents, Aunts, Uncles, Cousins and so on. They all work together for the good of the entire family. In America, there’s an expectation that young married couples should go off to live their own life. We are a society determined to keep up with the Jones’. We don’t feel complete if we don’t have the latest and greatest in gadgets, cars, electronics, etc. Consequently, we don’t value what we have. It’s disposable when the next best thing comes along.

I say it’s time to ignore the things and start focusing on things like family, relationships, prayer, faith and quality of time rather than things. I was recently told by a good friend that they could see me living quite happily in a communal lifestyle.  I think they might be right. Working together for the good of the whole has always been very appealing to me. For years, I have said that Communism (in theory) is a beautiful way of life. The problem is that Communism in practice doesn’t work like I think it should. So for now, I will go on treating my friends, my acquaintances and strangers like family because we were all created by the same God.  That makes us all equal in the brotherhood of man. 

 

Thursday, September 6, 2012

How are you?

"How are you?"  It's a question I ask dozens of times a day when I am at work.  But I don't really expect an honest answer.  I don't really have time to listen to everyone's answer.  People don't really want to explain to me what they are really feeling.  Likewise, when people ask me that same question I realize that they don't want a truthful answer.  They want a quick, polite answer.  Truthfully, I don't want them to know what I deal with.

But today I am going to give you the truth.  These truths may seem ugly, these words may seem harsh, these thoughts may seem negative.  Honestly, they exist and every day I battle these things.  Most days people never know how intense the battle is or even that it exist at all.  But in my world, it does exist and it's difficult.  I just refuse to allow it to overtake what I have worked so hard to build for myself.  Please don't judge me based on this post. This is not who I am or what I truly believe but these are the demons that I face on a daily basis. I'd like to think that I am pretty good at keeping them at bay and that the love I have for myself and others can overcome them.  I believe that my life is so much more than this and so much richer than just my battle with the demons of Arnold Chiari Malformation.

"How am I?"

• I have a headache.  This isn't your average "Not tonight, honey, I have a headache" kind of headache.  It hurts to blink and we don't even want to talk about turning my head.   There might be a mad dash to the toilet to vomit, so don't be offended if I suddenly run off.  The light is launching darts of pain into my brain and noise bounces around my skull like a racquetball.  I'm fine and thanks for asking.

• I am dizzy.  My balance system has been completely trashed and sometimes it feels like I'm falling even when I know I'm completely still.  My adorable new wedges have suddenly become my sworn enemy. It, also, tends to make me nauseous.  So suddenly, our expensive dinner reservations seem absurd and pretentious.  I'm fine and I'm looking forward to dinner.

• I am overly emotional for no apparent reason.  Of course, my new parking neighbor has left six inches between my car and his huge SUV. I will admit that I thought about slashing his tires or at the very least telling him why his custom vanity plate (Single 4 Life) is correct in predicting the fact that no one would ever want to be with such an #!@%&$*.  Luckily for Mr. Single, I don't carry a knife.  I'm fine and I can manage.

• I experience sensory overload.  The fantastic new CD you've waited for weeks to download sounds like a someone has released a cat in heat into my head through my ears.  The laser light show at this sold out concert seems like a twisted torture device slicing my brains to microscopic bits. This 'raw' style cinematography of the latest and greatest movie feels like fingers are poking through my eyes and swirling my brain inside my skull.  I'm fine and its really awesome.    

• I experience panic attacks while the rest of the world sleeps.  Just as my brain is drifting all to lullaby land, a  bolt of terror seizes my body.  It's as if I am terrified that I die at any moment, but I am equally terrified that I will continue to live.  I need to get out of my own body, but I usually just end up in a freezing cold shower or wandering outside in the dark. I'm fine and I can wait for the sun to come up.

I could continue this list for days.  All of us that suffer from Chiari realize that the symptoms are endless and the ways in which they effect are too numerous to mention.  Usually, I try to stay positive and not let all of these thing bombard me.  Sometimes, I feel like I put on a show to convince people how well I am doing.

Today, I am telling the truth.  The thoughts above haunt me.  I refuse to let them win.

Saturday, September 1, 2012

Chiari Awareness Month

551947_505285062818202_1711149381_n
September has been proclaimed as Chiari Awareness month in a few states now.  Sadly, my state is not a that has not made that proclamation.  However, I am not going to allow that to stop me from doing what I can to spread awareness for my condition.


 


20 Things about my Chiari
 
1. Diagnosed when? August '05 at age 36

2. Decompressed, if so when? November '05

3. Other additional conditions, if so which ones? Dysequalibrium, Degenerative Disk Disease, Diastolic Dysfunction (that's a LOT of Ds), Depression, Gloves and Stockings syndrome and Chronic Migraines

4. Have you personally met someone else with Chiari? Not yet.

5. Most challenging symptom(s)? Pain, of course!
 
6. Most embarrassing Chiari moment? I get clumsy and drop things easily. I once made a beautiful banana split at a friends house and then dropped the entire thing breaking her dish. :(

7. Biggest Chiari frustratsions(s)? Having to explain to a doctor what Chiari is.

8. Number of medications in your personal medicine cabinet? 19 including OTCs

9. Number of Doctors/Therapists stored in your phone? 6

10. Do you attend Dr appointments solo or with support? With my new hubby who is great at supporting me.

11. Biggest regret that Chiari has created? Missing once in a lifetime events due to symptoms.

12. Biggest lesson that Chiari has taught? That every moment that I feel okay is a gift, don't abuse it or let it slip away.

13. Favorite non-medicinal therapy? Yoga. Oh and music.

14. Worst medicinal side effect? Having the taste of all of my favorite foods changed.

15. Biggest change in your life since diagnosis? I had to quit my beloved job as a travel agent.

16. Worst medical test? It's a toss up between an electromyogram and the nerve conduction velocity.

17. Hardest thing to give up because of Chiari? Rollercoasters!!!

18. Have you become more or less religious since diagnosis? I have found more ways to become centered which has increased my belief that God is everywhere and not just in church.

19. Where do you find enjoyment now, that you didn't before? Now, I enjoy more down time, reading, talking with friends/family, etc.

20. Favorite Chiari websites? Chiari Carnival
 



Thursday, August 30, 2012

Oh, Chiari, you shouldn't have.

Dear Chiari,


You shouldn't have.  No, really, you shouldn't have.  You have given me such thoughtful gifts. They are, um...., incredible. Really, they are. They have taught me so much. The intricate details of these presents are truly mind numbing. They continually amaze me. They touch me in ways I didn't even know existed. You have opened my eyes to so many wonders.  My life has been transformed by all the things I have learned from you.  I didn't know it was possible to feel this way.  It makes me realize that you must really think I am special and I appreciate the passion with which you pursue my attention.  I mean, it's really commendable and it really does make me feel unique. I thank you so very much for the focus you have been giving me lately.  But you really shouldn't. You have been so dedicated to me, personally, for so long now.  You must be getting weary of being so attentive to little ol' me.  I'm so ordinary.

By the way, some of your closest pals have been coming around.  I assume you sent them to reassure me, as if I doubted your intentions.  Trust me, it's not necessary to bother them. There is no need to remind me of your devotion.  I am well aware of your feelings for me.  Surely, they would prefer to pursue their own interests.  They shouldn't feel obligated to hang around me all the time.  I appreciate the courtesy they have shown to me.  I really do.   They, obviously, really care about you; they know everything about you.  They are great at picking up right where you left off.   I didn't even have a chance to miss you because their habits are so similar to yours.  It's cute.  No, really it is.  Trust me.  I am sure they will be there for your through thick and thin.   It must be great to have such dedicated friends.  Thank them for me and tell them I'll be fine.

You must really think I am special since I am getting so much of your time.  I'm flattered.  Really, I am.  So look, I know this will be difficult to hear.  It's difficult for me to say and I hate that this will hurt you.  If I were interested in being involved, you would be my first choice.  Really, you would. You are really fascinating. Honestly!  You are captivating, mysterious, and eccentric.  You know, they should write novels about someone like you.  You re so interesting! You'd make a fascinating research subject. You're so perplexing and complex.  You could blaze new trails, create new ideals. Whereas, I'm just an average Joe.  Just a simpleton, looking for a normal, quiet life.  What I am looking for is so boring and mundane. I just need time, for myself.  I need to figure out who I am, without you. I shouldn't be involved, right now, especially with someone as rare as you.  We just wouldn't be any good together. I would just hold you back.  I'm nowhere near as fascinating as you are.  You really would be better off without me.  I am sure it just wouldn't work out; we're just too different.  So you see, its me; its not you. 

Wishing you all the best, sincerely.

Monday, August 27, 2012

Happy birthday to my baby boy

Brendon, Being your Mom has been the most amazing experience. Thanks for teaching me so much about life. I hope that you always find something to laugh at, great people to laugh with and inspiration to keep you moving forward. Happy birthday, kiddo. I love you!