Revive Hope's focus is to revive hope by creating inspiration. This blog will have postings of inspiring stories about individuals directly affected by organ and tissue donation, provide information about organ and tissue donation, and inspire those who view the site to give hope through compassion!
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Very often, when I speak to groups, I wrap up my talks with a story that has become a signature ending for me – a little story about the power of one person, or maybe the impact that a person has on one life… I ask people to think about it when the world feels so very big, and they feel so very small… The story goes like this:
One morning, along the East coast somewhere, there had been an incredible storm. The storm washed up thousands of starfish onto the beach, where they lay in the morning sun. A young boy was out on the beach – he was furiously flinging starfish back into the sea. A man strolling along the beach saw the boy bustling. He stopped and asked the boy what he was doing. The man told the boy, “There must be ten thousand starfish out here – you can do this all day and never make a difference!” The boy looked up at the man with a puzzled look on his face… Then he reached down and picked up a starfish – and he flung it out to see with all of his might. He looked up at the man again, pointing out to sea where the starfish landed – and he said, “I just made a difference in the life of that starfish…”
The story is an old one, with many variations – I first heard it at a caregiver’s celebration – it was told by a social worker at Loyola, Susan Long. I’ve told her several times that I stole it from her and that I use it all of the time to wrap my talks, and let people know how important their one decision, or one action might be… I get to explain to people how I was one of Kari’s starfish. Susan is OK with that.
So I’m minding my own business – checking out a little organ donation video about Hawkeye Heroes – and I decide to click on one of the recommended videos that popped up afterwards, titled “The power of one…” posted by Iowa Donor Network. It’s a beautiful and meaningful song by Bomshel. About half way through the video – up pops the beautiful girl who saved my life – Kari. And a little bit later there’s a picture of me and Jenn and Annie – and later, another one of me and Kari…
It’s kinda wonderful to find a little surprise like that now and then… It reminded me of another little quote that I love:
To the world, you may be once person. But to one person, you may be the world…
Register to become an organ donor – be someone’s hero… For years after you’ve left this Earth, you may be the world to several someone’s…
Last Tuesday I got to bat clean-up at Gift of Hope’s Lifesaving Partners Awards Ceremony… It’s Gift of Hope’s annual event to honor people who work closely with Gift of Hope to promote and accommodate organ donation – it can be people in government, media folks, hospital folks from Emergency Room, the ICU, ethics department and other areas – people who help grease the wheels, spread awareness, educate others, and help make organ donation happen… It’s one of my favorite gigs because I am an ultimate beneficiary of the work they do – and I get to thank them for what they do… And I get to show them how thankful I am for the gift I was given – for the girl and family who gave me this gift – and for the people who helped get this gift from her to me…
I borrowed a little prose from my friend in New Jersey who wrote the most beautiful thing I’ve ever read about Kari and about me on her blog titled "donorcycle", in a post titled Legacy. I wrapped my talk around a few paragraphs from her post… Here is what I said.... (click link to Adobe .pdf file…)
Now – this video has nothing to do with what I just wrote about – but maybe it has everything to do with what I just wrote about (the embedded video doesn't always seem to work, you can try this link...):
So – last week our friend Ruth told us about a news story she saw on TV (the above video) about a young girl with cystic fibrosis who is waiting for a double-lung transplant at Loyola, where I was transplanted. This young girl has also has been playing the lead in her high school production of “Hairspray” – singing and dancing with 30% lung capacity… She asked me if I knew her – I thought I recognized the name – I know I’ve met her family, but I don’t think I’ve met her…
The next day, I received a Google Alert for “lung transplant” on a story about Julie D’Agostino – the girl Ruth had seen on TV… I remember that I had met her parents at some cystic fibrosis fundraising function…
That day, I found her on Facebook and I sent her a friend request, along with a little note (OK, long note – I don’t do “little”…) I told her that our friend Ruth had seen her on TV, and that I had read a few articles about her. I let her know I was proud of her… I tried to tell her a little about what living and breathing with beautiful, new lungs is like – I told her to keep her eye on the prize and to get through this – and that I hoped that her journey is as amazing as mine has been… I got a beautiful note back from her thanking me for inspiring her and telling me that my words would stay with her forever…
That night, my Mom and my Sisters went to a play – my adopted niece, Lauren, was performing in the play… After the play, Lauren insisted on bringing my family back to meet the main character – who has cystic fibrosis and is waiting for new lungs and is “amazing” – and they introduced her to Julie D’Agostino… And Julie and her family proceeded to tell my family about the note Julie received from me just that day!
On Easter Sunday, Lauren showed me a number of YouTube videos of Julie’s performances – and Lauren was right – Julie is amazing… The thought that she’s up there, belting out these songs – dancing and strutting around the stage – with 30% lung capacity, I find rather awe-inspiring… Check out this video of Julie singing “I can hear the bells”:
Julie is listed and waiting for two lungs – without them, she simply won’t live that long… With all she does with the diseased lungs she’s living with now – I can’t even imagine what she’ll be able to accomplish with a beautiful gift from a special person and family… I tell people about Kari and about the beautiful lungs she and her family gave me – I do that because I want the whole world to know about her, and I want them to feel her smile like I do every day… But I also do that because of people like Julie – so that people understand that there are others out in the world with a desperate need – and when they commit to being an organ donor, at some point, hopefully in the distant future, they will help someone as precious as Julie – and someone like Julie will think of them the way I think of Kari…
I guess that there are a lot of reasons why I tell people about Kari – I never met her, but through her family and friends sometimes I feel as if I know her a little bit – and I don’t want anyone to ever forget her. But I also tell people about her to help people who take some responsibility in accommodating gifts like those Kari gave me and others, understand how precious those gifts are, how precious the giver was, and how special what they do truly is…
*Chicago Sun-Times photo by Jean Lechat
And then there are people like Julie D’Agostino, waiting for someone like Kari – and waiting for all of these people to leap into action to help deliver a gift to her from a person or family willing to donate… There are over 110,000 people like Julie waiting… I tell people about Kari so that they understand what organ donors do for their fellow human beings. Be someone’s hero. Register as an organ donor on your state’s donor registry…
There ain't no doubt in no ones mind That love's the finest thing around Whisper something warm and kind *
Somewhere around 23 years ago, not too long after we’d started dating – I was driving Laura home. As we were about to pull into the complex where she was living with her Mom, whatever radio station we were listening to started playing a set of four James Taylor songs… I recall that we drove around the neighborhood so we could listen… I was already madly in love – and I don’t know too many other artists who make you feel better about where you are and who you’re with than him… She told me that she and her friend Lee always went to see James Taylor when he was in town.
Her birthday was a month or so after that – and James Taylor had booked a concert somewhere around the city. I thought it would be a fun idea to get her tickets to his concert…
Some people find this rather shocking, because I usually strut around as if I own the world – and maybe it’s from living with a chronic, terminal illness – but I’d always had some issues with worthiness and self-confidence, particularly in relationships… Laura and I hadn’t been dating all that long, and I kinda worried if I gave her two tickets to the concert for her birthday – that she might not actually take me… So – to avoid that whole issue, I gave her four tickets for her birthday, figuring that I’d have a much better chance of being with her at the concert!
I really hadn’t been to a lot of concerts in my life – I started working when I was quite young – and going to James Taylor with Laura was actually one of my first “real” concerts… She did invite her friend Lee, and we all had a wonderful time…
On Monday – Laura and I went to see James Taylor and Carole King. This time she bought the tickets – and she didn’t really give me an option of taking anyone else. Not that I would have…
And I feel fine any time she's around me now, she's around me now, almost all the time. And if I'm well you can tell that she's been with me now, she's been with me now, quite a long, long time. Yes and I feel fine. **
It’s different now. Everything is different now. There were more than a few quiet moments at the concert when my eyes were welling up, thinking about all of the years that have past since that first concert. So many of their lyrics are beautiful, and emotional – and make you realize how special life can be… And now, emotions are usually a little more intense than they were before I was given this gift. I didn’t have it on my schedule to be hanging around this planet as long as I have. And I never imagined I’d be here with Laura as long as I have… And the girl who let me stay here – and her smiling face… She is always in my mind…
I apologize because I’ve been slackin’ off for the past few months and I need to get back in the groove… It’s not that I haven’t had a lot to say – the spirit just wasn’t moving me to say it… (I had a sixth grade science teacher who, after I was goofing off much of a semester, told my Mom that I seemed capable, but only when “the spirit moves him…” Mom assured her that the spirit would begin moving him that day…) While I was slackin’ off – I missed telling you about Annie’s adventures at the Rose Parade… And about Tim Joos, who with his beautiful daughter Samantha has doubtless inspired many to register to become donors – has become an altruistic living kidney donor himself!!!
And probably – over the next few weeks – Melissa is going to tell you a few stories about having more than a dozen people with stethoscopes listening to her beautiful heart… She was with seventeen people who remember that beautiful heart while it was being used by its original owner – their friend, Chloe…
Laura’s Mom told me that she wanted to hear more about Annie’s Donate Life Float ride, and I think I told her that I would do that today. I guess I lied about that… (Sorry Mom!) And there was a fun little thing I wanted to post about being at Jenn’s wedding, but I’m holding off on that too… I will touch on both of those topics shortly…
I got a note from a chick I adore, with a link to a video. It’s a beautiful, little music video of her song, “Pass it on.” The chick I adore works with a couple of other people I adore and they make up a band named Sons of the Never Wrong. Whether Laura and I are groupies or stalkers – I guess it’s a matter of perspective. Anyhoo – I posted about her song last April. It’s a song about so many things, but in my heart, it’s about one thing…
A long time ago, while she was writing this song – I got a precious little note from her asking me if I was aware that I inspire art… I guess I am now… In a verse in this song, she touches on a few people who are special to me, even though they’re not around anymore – but really, they’ll always be all around some of us…
She sings of a didgeridoo. That’s about a beautiful girl named Lizzy who had cystic fibrosis like me, and she was not on this planet nearly long enough. But, she did have two beautiful, new lungs for almost five years. As can happen to any of us recipients, at any time, after about four years with her new lungs, she went into rejection – she passed away while waiting for another transplant. I miss her. She’s one of the people I think about when I try to convince others to consider organ donation… Back in May 2007, I posted about Lizzy…
She also sings of whispers. I think she may have been influenced by a post I wrote back in May 2008, about a bike ride, which was titled Whispers… In her song, “Whisper” is about Kari, and about my life breathing with her beautiful lungs that she passed on to me… Her little music video is extra special to me, because I have a little part in it!!! Yup – that’s me holding a picture of Kari at around the 2:25 mark – and me writin’ on the sidewalk at 3:37… And the chick I adore who I keep referring to as "she", is Deborah Lader of the Sons of the Never Wrong. If you have trouble with the video below – here is a link to the Vimeo video, “Pass it on.”
“Pass it on” can mean so many things – but to me, it’s about the gifts one gives when they agree to organ donation… Please – check out the Son’s video… And,
A few Saturdays back – I got to spend some time with the Chana and Gulotta families, while they put the finishing touches on the floragraphs of Cameron and Jay that will be on the 2010 Donate Life Float. Scott posted a beautiful little piece with several pictures of both families and the floragraphs of Chandler and Jay titled Donate Life Float Floragraph Decorating Recap…
This is Annie with her daughter Elizabeth, and her son, JR… JR is part of the Jay Gulotta Band – I’ve heard them play – they’re a pretty neat group – they do a lot of original music, and a few covers. A few months ago, Annie shared the start of a song that JR had been working on – I found it incredibly moving even though I had only heard the first verse… Anne later shared it with me as JR finished his song, in a simple acoustic version and finally a version backed up by the rest of his band. They shared that version at our little get-together finishing the floragraphs…
JR got the inspiration from his Dad, Jay, who died almost eight years ago and became an organ donor… JR introduced the song to all of us – he spoke eloquently about being on the road one day, feeling a breeze across his face, and feeling the presence of his Dad – and realizing that he was going to be OK – that everything was going to be OK… It’s a beautiful song – It doesn’t speak specifically to organ donation – but I think if you’re involved in organ donation, or if you’re a donor family, and maybe particularly if you’re a recipient – and maybe more so if you’re breathing with new lungs – you’ll find it incredibly beautiful…
If the world is a nice place – this link will open up your MP3 player… JR’s song is titled Thank you…
I’ve been chatting with friends and other recipients and lately, the idea that I’m approaching the ten year anniversary of my transplant comes up often – yup, it’s still about five months off, but it’s still coming up… For those who don't know, ten years is a good, long ride for lung recipients!!! And walking home after one of those chats, it dawned on me that 20% of my life has been with her lungs. She’s given me one fifth of my life – and in a way I’d never imagined possible. Not that there was anything wrong with the other four fifths – they were pretty wonderful… Those last few years before I was given her lungs were a little rough, but there was still wonderfulness in those years too. But this last 20% has been beyond my wildest imagination… And she’s given me almost half of my life with Laura. We’ve been married just over 20 years – and though Laura watched me crash and burn 12-13 years ago – these last 10 years have been beyond amazing. I know there are moments when she wishes I’d just shuddup, the extra oxygen did seem to inspire a motor-mouth... But none of us has ever associated being quiet with this gift…
Can you imagine a gift like this? Can you imagine a fifth of your life as a gift? Half of your marriage as a gift? And not just a fifth or a half, but a truly amazing fifth and half… A fifth and a half that make me tear up just thinking about it… After struggling through four-fifths and not even truly understanding I was struggling, because it was just life – breathing like I do now is what I was always lead to believe heaven would be like…
And do you know how many friends I’ve met since this gift – how many lives have touched mine? Not only friends I’ve met on this journey – but friends I’ve met because of her – her friends and family – and they’re more precious to me than you can possibly imagine…
I'm not alone in how I feel. This is how so many recipients feel about the people, and the families who save our lives...
On another note – I fell in love with a song these past months… It was written by Brice Williams and performed by Lady Antebellum, and titled “I was here.”
You will notice me I’ll be leaving my mark, like initials carved in an old oak tree You wait and see Maybe I’ll write like Twain wrote Maybe I’ll paint like Van Gogh Cure the common cold, I don’t know But I’m ready to start cuz I know in my heart…
When I first heard the lyrics I welled up, and I wondered what Kari would have been, and what she’ll let me become… I immediately thought of my friend TC, over at donorcycle – she wrote the most beautiful thing I’ve ever read about Kari titled “Legacy.” TC touched on that – on what she might have been… When I heard the first verse, I wondered if I’m her initials carved in an old oak tree – if I’m a mark Kari left behind... I hope I am.
Cuz I know it’s my destiny To leave more than a trace of myself in this place
I wanna do something that matters, say something different Something that sets the whole world on its ear I wanna do something better, with the time I’ve been given And I wanna try, to touch a few hearts in this life Leave nothing less, than something that says “I was here”
And I know that I, I will do more than just pass through this life I’ll leave nothing less than something that says “I was here”
Is there a better way to leave something behind, that says you were here, than organ donation? A better way to leave more than a trace of yourself in this place, than saving a life, or several lives? Is there a better way of touching a few hearts in this life, than giving someone a fifth or a half of a life or marriage as a gift? I think it’s a beautiful song – here is Lady Antebellum’s version:
I hope that when others look at me, they see me as nothing less than something that says – She was here.
I’ve posted about the Sons of the Never Wrong before. They’re my favorite group ever. I think there may be a fine line between groupie and stalker and Laura and I probably dance across that line now and then…
They’re wrapping up their new CD for release in August – I love all of the songs on it. Deb wrote one with me and Lizzy and Kari in mind. I got an email from her while she was coming up with her song titled "Pass it on." She asked if I liked the idea that we inspired art... I do.
My favorite part of her song is:
far away and long ago, i made a picture, let it go... it’s flown away from memory, but in my heart, it’s all i see
here’s a whisper...and a digeridoo with every breath, the wind finds its muse take this whisper, sing the whole song here’s a whisper, pass it on, pass it on, pass it on, pass it on , pass it on when you’re through **
Deb told me that the “whisper” represents Kari. The didgeridoo represents Lizzy – Lizzy played the didg beautifully and I can’t see or hear a didgeridoo without thinking of her.
Lizzy and I received new lungs. Lizzy lived for almost five years. She went into rejection and didn’t survive the wait for a second transplant – there weren’t enough organ donors… She never knew anything about her donor – she would have liked that so very much – and her donor family would have adored Lizzy. Everyone did.
A while back, “Pass it on” was the tagline for organ donation for the Illinois Secretary of State and other promoters of organ donation… Deb let me know that she was thinking about Lizzy and Kari and me and organ donation, and the gifts that are given and received when she wrote “Pass it on.”
Until last week, I don’t know that I ever noticed a particular line – and thinking about it now, I think it’s beautiful... And perfect. In her note to Kari – Melissa’s post last Wednesday – she said, “He wears your lungs like a badge.” It’s true. While I was growing up, I tried to never let my cystic fibrosis define me. But this is different – I let this define me. Every moment I have, every friend I hug, is because of her. I don’t know how I hadn’t noticed the line, “In every breath, the wind defines its muse…”
April is National Donate Life Month. You have the ability to pass it on – to give someone life… Please consider the gifts you can give in the future and sign your state’s donor registry – here are the Illinois and Iowa registries. You can find other state’s registries here…
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