Wednesday, February 25, 2009

Behind the Smile

(continued from "All the King's Horses")

When I was in high school one of my biggest heroes was Charlie Chaplin. Although he was a man of questionable morals, what I loved about him was that he was a "jack-of-all-trades" in the entertainment industry. He wrote, directed, and even composed music for most of the movies he starred in. One song that he is credited for composing is the famous song "Smile" from the movie Modern Times.

Long after the hospital experience I have been sharing with you was over, I found myself on an orange couch in front of a nice therapist named Paula. I started visiting her my junior year of high school and in one of our sessions I brought up some of these stories. I brought them up how I always bring them up - in an oddly casual fashion. I can see now that I had and still have a great disconnect in regards to this time period - a defense mechanism I am sure. I told her that for some reason I had a real desire to share these stories with people, but that no one seemed to want to listen for very long. I could tell it made them uncomfortable and I don't like people to feel uncomfortable. So I'd tell a little bit and then stop.

Now anyone who knows me well knows that the way I process through my emotions is by talking. So now that I think about it, it's really not surprising that I have unresolved feelings about my medical experiences if I have not, until now, really shared them with anyone. Once again I am crying. I am just so thankful for you, my faithful readers. Thank you so much for caring about me and my story. Many people have told me that they've learned a lot about me through my blog. But the truth is I've learned a lot about me through this blog. And I just wanted to take a moment to say thank you for helping me through this healing experience.

So I told Paula that I had some videos of me in the hospital that no one else had the desire to watch with me. I was so happy when she said she wanted to watch them. I brought them on my next visit and between sessions she watched them both. As we discussed what she had seen, she offered me her biggest observation: I was always smiling.

The pictures above are of the various devices that were used in the attempt to reinflate my lungs. The first being a tube up my nose. The second an oxygen misting device. The third is a bi-pap, providing positive pressure to my lungs. And last, the iron lung - something straight out of a sci-fi story. But no matter what I was dealing with; no matter if I was uncomfortable, hurting, scared; if a nurse, respiratory therapist, physical therapist, family member or anyone with a camera said, "Smile, Alicia!" I did. I would turn off all other feelings and smile. I remember one RT who would always say "Where's that beautiful smile?" and I'd deliver every time.

They tried to keep me happy all the time. And why wouldn't they? Who wants to see a little girl sad or in pain? But never once do I remember anyone asking me how I was feeling. How I was dealing with everything that was happening. During my most recent hospital stay I had a chaplain visit me almost every day to help me sort through things. Where was my chaplain then? Where was Paula then? Instead I had stuffed animals, a TV with VCR, a few cable channels, a couple cassette tapes - pacifiers for a big baby.

Anything to avoid the pain and anxiety.

But, heck, if someone had bothered to ask me how I was doing I probably would have said I was okay. I probably would have shut down and told them what I knew they wanted to hear.

And then I would have smiled.

SMILE by Charlie Chaplain

tho'your heart is aching,
Even though it's breaking,
When there are clouds in the sky- You'll get by,
If you
Smile through your fear and sorrow,
Smile and maybe tomorrow
You'll see the sun come shining through- For you.
Light up your face with gladness,
Hide ev'ry trace of sadness,
Altho' a tear may be ever so near,
That's the time you must keep on trying,
Smile- What's the use of crying,
You'll find that life is still worthwhile,
If you just smile.

(to be continued)


anabeau said...

This one made me cry! I can't remember a time during the time that we knew each other in HS when you weren't smiling...ok maybe once over a boy. But I do remember that I admired the courage you had, and I admire the courage that you have today. It seemed to me so brave to be in your situation, with such daunting odds against you and yet it never seemed to bother you. You were always smiling and encouraging others...Thank you.

Eish said...

After reading this entry, both of my parents sent me e-mails. I'm including them here, with their permission:

From my mom - "My darling daughter what a wonderful blog. So much insight to your life. I really love you. I am sorry we did not ask you how you were doing. I am thankful that again God has given you life. I will always love you and hope that you will let me know when you are down. You loving mom."

From my dad - "Youth are often shuffeled aside in expedient attempts to 'get it done' by filling youths time with everything but listening to the soul,including movies, books, pictures. Thank you for telling your story. Excelent job !!"

Thank you Mom and Dad for letting me be so open with my story. I know that sharing my story means exposing our family's imperfections as well as our strength. I love you both very much, thank you for being so brave.

Anonymous said...

I feel a bit bad but, it needs to be said. Twice now you mention crying as I still do to myself, as if this is bad. Stop it. You discount your emotions when you do that. I know it is a habit, one many chronically ill children develop and one meant to comfort others. Stop it. You are a human, crying is a big part of that.

Also, you called yourself a big baby. It takes great strength to survive. It takes massive will power to smile when you are in agony. It takes greatness to smile when you are burning alive with pain and going through withdrawals.

So stop discounting yourself. I know this is your journey of self discovery, but, feelings are a part of who you are. It is alright to cry, it is alright to smile, it is alright to feel whatever you feel. Sometimes tears can be happy, sometimes they are truly full of sorrow.

You are surviving, you have a great strength and perhaps your writing will help someone else who shares your condition through their childhood. You are not just learning about you, you are creating an educational tool for others. Where might a mother turn now seeking information on disability when her child is diagnosed? The Internet.

Love yourself. Accept yourself. These are the greatest challenges in life.

Eish said...

Thank you for your thoughts, textualfury.

The whole reason I am sharing about this is to heal and also to share with others who may be experiencing similar issues/feelings.

Please don't misunderstand when I mention crying - I don't mean to make it sound like a bad thing. I just mention it to let those reading know when I've moved from just telling the story to hitting something deeper. If I don't tell them something has moved me to tears, how else will they know?

While I agree with you that it takes courage to smile through tough circumstances, I think it's also important to be real about your feelings. And what I was talking about in this particular blog were instances in which I knew I was being inauthentic - putting on a smile in order to reassure those around me, when in fact I was the one who needed reassuring.

I'm so glad you've been reading, and I always appreciate feedback! Thank you again!

Sachin Kumar said...
This comment has been removed by a blog administrator.
Michael said...

Alicia, woke up Friday night @2am, couldn't sleep. I stumbled into Temporarily Disabled. Knowing you through those years, what always struck me was your understanding of how to help us. The inner fear and doubt you held back, shined outward to those around you as wisdom and knowledge through your words and eyes, it was beyond our years. Paul and I would be astounded with your presence. Even if it was just ‘acting’ on your part, as you elude – the above still claimed.

In a response earlier, you said you were inauthentic… you weren’t. Alicia, your spirit and life helps me through my fears. You amazed me then and you amaze me today. You have ‘grown old,’ married and give much to so many.

There is a song you remind me of:
“I See The Light of Christ In You.”

So that being said and not trying to ‘poof’ this into a Hallmark greeting card, your Christ likeness shines through brighter today. You truly live life. I love reading, seeing and hearing you dance through life in your blog and fb.

I look forward to singing the song above, together, soon - Michael Hawkins, San Jose CA

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