Yesterday, (March 21st, 2010) and today, (March 22nd, 2002) are extremely important days in my life. In fact, they are more important than my birthday; I actually consider them as anniversaries.
These days represent life, the new beginnings of who I am today. They are about change and opportunity where the path splits from a dead-end road to a paved new beginning. These dates are the anniversaries of my two double lung transplants.
My first transplant in 2002 was the closest thing to a cure for Cystic Fibrosis. However, with a transplant you often change one set of problems for an entirely different set. When a transplant is going well it means LIFE, new beginnings and possibilities of new and exciting experiences.
My second transplant was the result of chronic organ rejection, this can happen any time living with a transplanted organ. Although I had been down this path once before this time the scenery was quite different. I was now an adult located at a new hospital, working with a new team leaving behind my friendly nurses who were like family, that made the transition into the world of transplantation so much easier!
I’ve had other health issues that I have covered in my blog, and I encourage you to read them.
Unfortunately, at this time I won’t be able to give you my yearly assessment update for another week or so, as this year my appointment falls back on a later date. This appointment is a yearly follow up of tests and results to see where my current health status lays. But marking 16 years of a double lung transplant is quite rare.
With this information being delayed I thought I would write a different post sharing some insights into the world of organ donors and their families.
I NEVER PLANNED FOR A FUTURE,
Many of us only get one chance at life, a chance to grow up, dream, find our purpose and fulfill it. As for me maybe the lion that lives inside of me has brought out cat-like characteristics of 9 lives. Looking back I never did have many dreams or plans for my future. I didn’t envision what school I would go to, a career path to wander down, or what I would do once I finished school. I never took growing up a serious factor in my life as growing up meant an early death; a dark path I never wanted to look down nor venture. Whenever someone would ask me what I wanted to be, the reply would never be serious. The typical answer was “Work in the Mafia as a Hit Man or someone that would take over the world”. Maybe that was because I grew up with Cystic Fibrosis and subconsciously knew I had a disease for which there is no cure. My health challenges shifted my focus and priorities to just surviving, another day, another week another year, thoughts that most young people my age never encounter
I have struggled for a very long time about writing a letter to my donor’s family. I have written this in my head a thousand times but have never published it. Not because I was lost for words but afraid of not saying the right words.
Imagine there is a family that is in shock, grieving the loss of their loved one. Emotions are running on high and yet through all this chaos they are willing to give a complete stranger a gift.
There exist an invisible heart-wrenching thread and a bittersweet bond between donor families and recipients.
Dear Reader /Readers,
I am now ready to share my thoughts and reach out to the families that helped me. I do not know where this letter will end however, I do know it’s written from the heart. I can only hope you’re out there and one day this letter finds you, as you are the reason for me returning life into my body.
I say return life into my body as at the time of March, 22. 2002/ March, 21. 2010 I was in end-stage Cystic Fibrosis (2002) and chronic organ rejection (2010), an organ donor was the only chance I had at living. I look back at what I wrote near the time of my transplant in 2010, you may start to understand what I mean by “returning life back to my body”.
February, 26. 2010
“I am a hollow shell, the life that once flowed throughout my veins has been replaced with stillness, uncomfortable stillness that puts me in a state of high anxiety. Never did I imagine sitting here in this darkness alone, cold, feeling “flat-out useless” as the purpose of a sundial on a moonless night. I fear the nothingness that never existed inside me. I’ve lost everything and have gained invisible weight that only I can feel and see. I can see myself from a far distance, looking for help, light, and a familiar face that can help. I’ve become something that I’ve always feared………….. ALONE, and EXPIRED. I’ve succumbed to that poisonous fear that will eat me alive.”
You are my Donor and Donor’s Family; “You’ve given my body the life that I never thought was possible”. How do I begin or where do I begin? A “thank you”, in my eyes isn’t even close to the expression I wanted to pass on. Every-day I think to myself how to thank-you and show the appreciation that you deserve. There is not a day I have not thought about you, I try to imagine who you were, what you believed in, your goals dreams and what you left behind. I can only hope I’ve come close to what you would want your donor-recipient to be. I’ve written countless amounts of letters on paper, held countless conversations in my mind of thanking you but never believed any of them were up to standards for showing the gratitude that I want to give back.
The battle we share of a faceless world of not knowing each other can leave so many questions left opened.
I fight to keep our story alive. I do this for all the tomorrow’s still to be lived and dreams that need to become realities. My wish is to succeed so that our journey can be “a story” helping to instill faith and hope for those that feel they are in the dark and alone. Tomorrows do exist; there can be light at the end of the tunnel. I am the match; our striking pad is our journey.
Dear Donor family,
I am sure this letter may be difficult to read, it has been difficult to write and will always be.
How can I possibly say “Thank you”? Eight letters aren’t long enough. Eight letters aren’t enough to grab onto all the emotion that I’m feeling as I write this. It isn’t enough to encapsulate the emotions I experience day to day when my donor crosses my mind.
Eight letters for each year added to my life!
“Thank you” is an expression which is used quite often as a polite expression when acknowledging a gift, service, or compliment, or accepting or refusing an offer. This is a different kind of “thank you”; it’s a “thank you” that defies English or any language out there.
How do you say “thank you” that means because of you and your family member I am alive today!
I see a family that lost a precious, beloved person in their life.
Your gift I received the day of my transplant changed my life forever. You have given me a gift that so few could give. You have put life into a dying boy/man’s body, how do I ever begin to thank someone for a gift that powerful? At this point in my life, I can’t fathom the thought that my life could have been cut short at sixteen, I would have missed out on the last 16 amazing years.
I apologize for the time it has taken me to write this letter, and in many ways, I have thought about it but always wanted it to be the perfect letter as you have saved my life and allowed me to share it with others.
There isn’t a day I do not think about you and your lost one and the gift you have given me, there are no words to describe how thankful I am.
You have allowed me to grow and continue a life that I never imagined on living. You allowed me to graduate from school, become an uncle, have shared birthdays I never thought I would see, go to places I have never imagined going to. You gave me my independence back, you have given me a chance to make dreams and let them come to life.
There have been many nights that I lay awake late wondering what life would be like if I wasn’t here. The people I’ve met along the way, how I have changed their lives with our story. I know it would be a lot of great moments and laughs from my family and friends missed, as they really do appreciate the gift you have given not only me but them as well.
I continue my life’s journey letting others know how important being a donor is and the impact of how it can change other lives. Its people like you that we all need to look up to. The most unselfish gift given to save another’s life during an extremely emotional and devastating period in your life is truly amazing and honorable.
You were forced unwillingly to close a chapter in your life, as I was just about to write a new book in mine. This book isn’t fiction, the characters in it are real, the pain, joy, love, our emotions, visions are all real. Real as you and I are. Hero’s are people like you, putting your family’s situation on hold while giving thought to someone else. This is the truest GIFT OF LIFE.
As I said before, a transplant isn’t a cure, but what it does is allow you to buy time, another trilogy of our life. We are all limited by time however, if we use it to our fullest it is incredible what we can accomplish.
There have been times I needed to put my life on hold as my condition had quickly deteriorated. These times of darkness put a huge strain on my family and me.
If you can imagine before I received your gift, life was very challenging. Anything I did required an incredible amount of effort. Even with oxygen, I still had to be in a wheelchair if I wanted to go out. The simplest tasks like putting on socks, showering, getting in and out of the car left me gasping for air. Next to the gasping was the chronic coughing that I was all so well known for. I avoided laughing because it would bring me to a coughing fit and I would be unable to catch my breath.
I want you to know your gift has had a ripple effect of giving. You gave my parents their son back, my siblings their brother, and many people a friend. But most important you have given HOPE and ENCOURAGEMENT to so many other people that our story has reached and touched all over the world.
I don’t know if “Thank you” can truly encompass just how grateful I am for this gift called life. To be honest, I don’t know if I will ever truly be able to wrap my head around this fact. How can I celebrate each and every day knowing that with every breath I take, there is a wonderful family out there grieving, I am the beneficiary of your loss.
One thing I want you to know is with each breath I take and each new experience I am lucky enough to have, I say, “Thank you”. It wasn’t until after my transplant that I knew the immense satisfaction of what a deep breath was. Many people take breathing for granted however when you grow up struggling for air I will forever be grateful for your gift. I am able to walk more than 3 kilometers without being short of breath, without my fingers turning blue or needing to rest every few steps.
You have given me a second chance to live and experience many tomorrows. I am able to see the sun rise and set, feeling the rays on my face.
I feel that each new day has endless possibilities and that my horizons are without bounds. I only hope that I am able to justify the use of this wonderful gift.
You and your family are my heroes. I hope in the process of reading this post you will understand the heartfelt thank you that I am trying to express.
Because of you, I’ve been able to double my life. Because of you, my shell has been filled with life, my veins flow with energy and my life is no longer stagnating. Because of you, there is light in my days, I now see a purpose in my journey. Because of you, I have a sundial that works with each sunrise and sunset, it is beautiful to see. Because of you, our lungs can continue to be filled with oxygen.
Because of your gift of life I’ve learned the true meaning of a quote by William Shakespeare.
“The meaning of life is to find your gift.
The purpose of life is to give it away”.
Thank you for returning the gift of life back into my body.