We All Are Survivors. We Don't All Tell Our Stories. I'm Here To Tell You Mine.

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I was an energetic, curious, strong-willed, creative child. I climbed trees and bookshelves like a monkey in the jungle, danced until I was dizzy from twirling, made make-believe pies in the broken backyard grill with sticks and mud, grabbed  onto any other child I saw walking down the block so they would play with me, and just loved people (still do, of course!).

I was mischievous, in a good way! I hid library books in my pillow-case so that I could read during nap time and learned a lot about life and magic at a young age. I remember going through my aunts' closets to try on their sequined dresses and red lipstick, reading through the private notes my cousin hid in the back of the closet (who was like an older sister to me), and pretended to be Madonna as I belted out every lyric  I could remember on our deck in the summertimes. I knew that life was much bigger than anything than I could ever have imagined, and acted on that young-wisdom by creating the world I wanted to see around me.

Then, it happened.
The month before my 9th birthday, I felt tired, sluggish, thirsty, and just plain sick. I had to run to the bathroom every 5 minutes because my body craved water every few minutes, slept most of the day without wanting to go outside to play, and remember having to manually wet my lips with water when I wanted to speak. I was dehydrating quickly, losing weight, and it was all happening within a few days' time. When my parents saw how gaunt I was starting to look, they had my aunt take me to the doctor to get checked out. The doctor sent me to the hospital right away and I was admitted immediately. I stayed there for about 3-4 days before the doctors knew what was going on. My parents were present at every moment with me, except for Sunday, as they go to church. While they were gone, a tall, thin, dark-haired, spectacled doctor came into my room as I held onto my Popples backpack, playing with marbles that my aunt had given to me as a gift.

Doctor: "Hi sweetie! Where are your parents?
Me: "At church!"
Doctor: "Well, we think we know what's going on here. You have diabetes."
Me: (with a crushed soul as I thought "diabetes" meant I was going to "die", I started bawling)

The doctor then realized she should not have had said anything at that very moment to a mere 9-year old child who was alone in a hospital bed. She hugged me, told me everything was going to be fine, took me to the playroom until my parents returned from church, then told them what my diagnosis was.

I remember the day so clearly, because it affected my life forever.
From not being allowed to have sweets and being on a strict diabetic diet as a child, to middle of the night low-blood-sugar reactions, seizures, 4 blood tests and 4 insulin shots each day, wavering eyesight, dozens of ophthalmic surgeries and procedures, and more--- I became tired of what life felt like.

I was diagnosed with chronic kidney/renal failure at the age of 33. My doctor told me that my kidney function rate was dropping and that he'd keep an eye on it for me. A few months later, my nephrologist called me on a Friday afternoon.

Doctor: "Hi! Are you available to come into my office today? I received your blood work back and would like to sit-down and talk numbers with you."
Me: "I'm all the way in DC. Since it's 4PM, I couldn't even get to you in a taxi until 6PM. You'll be long gone before then. Can you talk numbers with me on the phone?"
Doctor: "Sure, ok. Well, the most important number I want to talk to you about is your kidney function rate. It has dropped and you're going to need a kidney transplant."

I thought I was going to pass-out from the lack of oxygen going to my brain (& heart) after that news. I sat down, talked to him a bit more about what the process would look like in general, and hung up the phone. I texted my fiancé to pick me up from work a bit early, then collapsed in my office chair to cry. I felt like I was the only person on Earth at that moment, alienated from the rest of the happy-go-lucky-world. I didn't feel like moving, or breathing, for the next couple of hours. 

That weekend, I cried alone, remained unable to communicate with anyone as I didn't want to tell anyone the news (except for my fiancé), and locked myself in my bedroom. A huge storm hit that very night and knocked out all of the electricity in the entire DMV area. Given my state of being, it seemed fitting. I mean, why not? Might as well turn out the lights literally, if I felt like my lights had been turned out figuratively, right?

I remember telling my parents a week later.
I gave myself enough time to process what was going on, got myself together, and told them when I was strong enough not to cry.

Me: "Hi! I have to tell you something really quickly, then I have to run out the door. I got a call from my nephrologist. He says my kidneys aren't functioning well, so I'm going to need dialysis and a kidney transplant pretty soon. It's ok though. I'm fine and we'll figure it all out. So... I just wanted to let you know. Gotta go, ok?" (all stated within a 5 second time period, without breaths in between sentences)
Parents: (long faces with mouths wide open)

I must have crushed their hearts that day. I couldn't talk about it more, or I'd cry, which would cause more damage. The next day, my dad called: "How are you doing? REALLY doing?". I didn't have a better answer to give him than to say, "I'm fine. I've had time to process this a little, but I'm ok." I really wanted to protect his feelings in this, too. No use in us both crying.

A few months later, I lost most of my vision after having dozens of eye procedures and surgeries performed. I developed ischemia and went completely blind in my right eye, and peripherally in my left-eye; furthermore, there is a wrinkle in my left-eye's surface, so things do not look/appear as they should most of the time. They stopped doing surgeries after that. I do have some of my left eye's vision left, and want to keep it--- thank you very much.

I was put on the organ transplant list that same month, and received my first "offer" call after only 5 or 6 days. It both scared and excited the daylights out of me. My surgeon turned that particular offer call down but, only after 4 more months of waiting and 4 more calls later... I received THE call, and went into transplant surgery on June 1, 2013.

Here I am, 5 years post-transplant and still without most of my vision, and LOVING the life I live.

I can "see" the world so much more clearly now, without vision. My senses (& intuition) have heightened to a new level I never before knew existed for me. I decided to do something with my life that I LOVE--- truly love, and am passionate about. No more being told what to believe or what I should be doing with my life. No more feeling sorry for myself. No more claiming sickness/disability as my way of life. It was time for me to rise-up and re-claim the power that was meant for me in life... so I am doing it! 

I’ve been given a new chance at life, and I’ve been LIVING IT (and so purposefully so). If it weren’t for my donor (may he rest in peace) and his decision to selflessly give of himself, I wouldn’t be here today, making a difference in the world.

Organ donation is so important.
Being grateful for every day you have is as equally as important.

We all have a story.
Is your story one that you are in love with? Why not make it one???
You have the power to change it, at any time, if you really wanted to.
Start now…

What are you grateful for today? Comment below!



Knowing is half the battle...

Are you at risk for getting diabetes?

Two simple ways to check for kidney disease!

Learn more about how to become a kidney donor: 
You have two! Someone out there needs only one! 

Learn about ways to give to the American Diabetes Association: http://www.diabetes.org/donate/

Liz StromComment