S3 – EP 9 “Raising a Hand For a Cause (with Dave Clements and Kevin Black)”
TAJCI:
Today, on Waking up in America we are raising a hand for a cause. I have two amazing guests today, musician Kevin Clack and photographer Dave Clements. Kevin’s devastating family tragedy was not only his own turning point but also changed the life of his friend, Dave. In today’s episode we talk about a rare disease that claims lives of many young girls that’s now bringing together people in a common passion to heal and be healed.
BUMPER:
I’m Tajci. At 19 I was a superstar and I was lost inside. I left it all behind, switched continents and started all over. Years later I found myself lost again, this time in the American Dream. This is a story about awakening. About living the life you were created for. About going inward and discovering the joyous and purposeful person you and I are both meant to be. This is Waking Up in America.
TAJCI:
Dave, thank you so much for being here.
DAVID:
Thanks for having us.
TAJCI:
Yeah, you know, I feel like the stars aligned for you to just happen to drive through Nashville on your book and concert tour on the exact day that I am filming my show.
DAVID:
Ever since we started this book project the stars have been aligning for us and this is just another example. We would have never had a book without that happening.
TAJCI:
Yes and this is the book and will you please introduce the book and the project Raising A Hand?
DAVID:
Well, the book is called Raising A Hand. It’s a book of music photography that Kevin and I have both done. He’s a musician and a photographer and I’m a freelance photographer and several years ago we had the idea of putting together a book to try to raise awareness and money for a disorder called Rett Syndrome.
TAJCI:
Yes, Rett Syndrome. Let’s just quickly give an explanation of what Rett Syndrome is.
DAVID:
I’d be happy to. Rett Syndrome is a disorder that only impacts girls. It’s a mutation that happens at conception. These girls about one in 10,000, which is not very frequent but frequent enough especially if your family that has been diagnosed with a Rett Syndrome daughter. But these girls are born normally. They progress fairly normally up to the age of 12 to 18 months and then they start regressing back to infancy. They lose their ability to talk. They have no meaningful hand motion. Most of them have a lot of hand-wringing, for sure they can’t raise their hand. And many can’t walk and in the case of Kevin’s daughter Courtney, which is kind of what brought me into this story, Courtney lost her life at the age of 16 due to complications from Rett Syndrome.
TAJCI:
Yes and I am so grateful for you to do this to raise the awareness, especially for these, you know, like you said, not such common diseases that get forgotten and especially you know, few people that experience that, like you said, have a family member who was is affected by the illness. So thank you so much. Now I understand Kevin’s turning point was that, you know, when his daughter was diagnosed. So tell us about your turning point.
DAVID:
Well, the quick story is that I retired from Corporate America and I knew I was retiring and at the same time I was also getting married and I had a gift that I wanted to give to my soon-to-be wife. It was some sheet music and it was a song that Kevin’s brother Clint had written called. “It’s Something That We Do”. Anyway, I wanted Kevin to sign it because he also was a singer and I’d seen them. So I took it to him ask him to sign it and I made the mistake as I was leaving to say, “Kevin, is there anything I can do to help you with your music please don’t hesitate to call. I’m getting ready to retire from my corporate job.”
TAJCI:
And it was a nice and corporate job.
DAVID:
Yeah, it was a nice corporate job and I’m blessed to have had it and it gave me the wherewithal to be able to do some things different in life but a little bit. But little did I know at the time when I first met Kevin that he had this daughter and I didn’t know that her name was Courtney and for sure I didn’t know that she had a disorder called Rett Syndrome. I couldn’t even spell Rett Syndrome and it’s spelled R-E-T-T. So it’s pretty easy but I’ve never heard of it. And it wasn’t until Courtney passed that my story really began with Kevin. I had helped him for a while but it was pretty easy stuff—taking a few pictures, trying to book him a show here or there. But when Courtney passed my wife and I were able to go to the funeral and it was a day I’ll never forget in my life and it changed my life and to this very moment.
TAJCI:
What did you feel there?
DAVID:
Well the date was March 9th, 2003. It was a Sunday. It was a nice Sunday in Houston, Texas near where I live. And we we’re at Courtney’s funeral and it hit me like a freight train going by. We have a daughter named Sarah who is within a year the same age of what Courtney would have been had she not passed and the whole time that Kathy and I stood and watched this funeral unfold and the burial, all I could think about was the thought of burying my daughter. And you know, frankly it was the thought that I couldn’t comprehend then and can’t comprehend now. It was an inconceivable thought and it’s one that changed the course of my life. And I can elaborate but
TAJCI:
Yes I hear you know being faced with fear, “What if?” with all these questions, “Have I lived my life?” and we’re going into that. When we come back we’re talking to photographer Dave Clements and his partner musician Kevin Black about Raising A Hand for a cause
BREAK
TAJCI:
We’re talking to Dave Clements the photographer behind the project, Raising A Hand, raising awareness for Rett Syndrome. So David, you tell me that you were at the funeral of your friend Kevin’s daughter who died from Rett Syndrome. And I want to know what was going on inside?
DAVID:
Well I think what really happened is what unfolded the next three to six months. And I saw, I knew what emotions I felt that day as a dad and I saw another dad, my friend, Kevin struggling with the loss of a daughter.
TAJCI:
What were your emotions?
DAVID:
Well, they were one of denial and pain and suffering. Even though I couldn’t conceive the thought I was feeling his pain and the only thing I knew to do is I couldn’t relieve the pain by flashing a magic wand over his head. All I could ask him to do is to join me and try to make the difference in other families’ lives.
TAJCI:
Why didn’t you numb the pain?
DAVID:
Well I’m not a numb-er sort of guy, I’m kind of a doer and it was more about trying to help my friend, Kevin add meaning to his daughter’s life and death is a Rett child then it was for me to relieve the pain any other way and it has been helpful. I mean it’s add meaning to my life because the story is about two dads trying to make a difference in the big world. And we’re not celebrities even though his brother is and that has helped us in our journey.
TAJCI:
And talking about Clint Black?
DAVID:
I am.
TAJCI:
Who also had contributed to the awareness of this project.
DAVID:
Yeah. For sure you’re talking to one of the best name droppers in America because after Kevin and I got involved in this process, Clint said, “Hey, what can I do to help?” and that’s helpful when a celebrity
TAJCI:
And I noticed that this book is full of musicians, big names musicians that you photographed and then asked to join the project.
DAVID:
Right. Well, Kevin does photography. He’s darn good even though he’s a musician first. I was in corporate America but I’m a second career freelance photographer and people tell me I do a pretty good job. And they liked the book but everything that we had done for three or four or five years was all centered in the Houston area as far as trying to raise money and awareness. For several years after we started our effort to raise money and awareness the idea surfaced that perhaps there was an opportunity to go beyond Houston and beyond Texas, as far as our reach and trying to raise money and awareness. And ironically a picture that I had taken of Kevin’s several years before became kind of the nucleus of an idea that, “Geez, I like photographs of entertainers raising their hand in the air.” And ironically was a picture of Kevin and from there the concept of doing a book and doing something nationally surfaced in my mind and right from day one the thing I’m most proud of is that this book right from the beginning was always going to be about trying to raise money and awareness for Rett Syndrome. It was never going to be for profit it was never going to be for personal gain, been there, done that, this was always going to be to try to help little girls.
TAJCI:
Yes, and I even see the wider how it helps people to do you said, it’s two dads, you know, one healing from his tragedy but the other helping his friend to deal with pain. Sounds to me that you were able to open up to instead of numb or run from the pain like a lot of us do. You embraced it. You jumped into it. You said, “Let me feel it for you and with you.”
DAVID:
Yeah. I would hate to try to analyze exactly why I’m doing it but it’s been clear to me that it was something that I have to do. And until we find a cure, I’m in.
TAJCI:
You’re in.
DAVID:
I mean Kevin and… And I’m not in alone. I mean we are partners in this thing and we’re going to hang in there until a cure is found.
TAJCI:
Thank you.
DAVID:
And we’re going to talk to anyone who will listen to our story and we’re going to try to tell it as succinctly as possible. We’re going to keep going to our last breath.
TAJCI:
It sounds like your faith is just unwavering.
DAVID:
And that’s why we felt like you were part of that because if you have a vehicle to get it out to more people, it was meant to be for us to be here today and I’m just so excited not because I like being in front of a camera but it’s an opportunity to perhaps tell one more person about a disorder that needs to be eradicated from Earth. And it’s one more opportunity to perhaps raise a few dollars to go towards Rett research. And I’ve got to add is that they’re making a lot of progress in Houston, in Birmingham and Boston. But the researchers have been able to actually reverse the symptoms in mice and they’ve been able to start doing clinical trials. And think that one day there might be a cure for Rett Syndrome in our lifetime. So it’s real.
TAJCI:
It’s real and we can all make a difference. We can all help to have that happen. Thank you so much. When we come back we’ll bring Kevin Black in and talk to him about Raising A Hand.
BREAK
TAJCI:
We’ve been talking to Dave Clements, who, along with Kevin Black has been raising awareness for Rett Syndrome with a beautiful project Raising A Hand, a photographic music festival with a cause. Now we’ll switch gears and welcome Kevin.
KEVIN:
Thank you so much, really appreciate it.
TAJCI:
Thank you. We could have a series with your story and just talking to you. I wanna try to just recreate a little bit of what it’s like for you to lose a daughter to this terrible disease.
KEVIN:
Well it’s probably not unlike all the other parents who lose a daughter. I just happened to spend 16 years with a daughter that was different than a lot of other people’s daughters. But I know losing a daughter is the same to just about every other parent as it is my loss. You know, when Courtney passed away, I know I’m probably jumping forward a little bit but when she passed away I was ready for Rett Syndrome to be over and out of my life and just take my memories of Courtney and move on. And it didn’t happen that way. And sometimes you know how we plan things and then life changes and there’s a road that pops up and you decide which way you’re going. And that crossroad came whenever Dave and I had a serious conversation about trying to make a difference. And from that point forward I haven’t been able to really grieve completely over it because Rett Syndrome has been in my life ever since then, you know.
TAJCI:
And you have two other children who are
KEVIN:
I have two sons who are grown now, 28 and 24.
TAJCI:
Also in the music industry like yourself?
KEVIN:
They’re both musicians.
TAJCI:
Yes.
KEVIN:
I was hoping they were smarter than that.
TAJCI:
Well you know, music—I’m a musician—it’s healing and once you once you feel how it takes your soul and
KEVIN:
It’s helped me a great deal and in this whole journey from… Because one of the messages that I get to deliver is something of hope and through my music there’s a lot of lyrics and in music that help people learn to cope whenever maybe they did in the day before as well. And when they hear a song and they understand that there’s other people that are going through life just like they are. We didn’t, I didn’t know that when Courtney was alive. They didn’t have the things that they have available now—all of the outreach programs—or we didn’t know about them.
TAJCI:
Right. You know and that’s why it’s so important that you’re speaking of, that you’re sharing your story—that awareness, that support, and that hope that you’re delivering that’s saying, “You don’t have to be alone in your pain.”
KEVIN:
And that is one of our messages. We don’t get to express that to everyone—obviously we can’t. But we get to go in and do programs like this one and hopefully, you know, there’s a lot of people out there and maybe even some of the medical community that’s out there that’s unaware of what Rett Syndrome is. And the more the medical community understands about it, the more hope that Rett parents and Rett families have because they know that someone is out there focusing on a cure.
TAJCI:
So was your turning point really when your daughter was diagnosed or when she passed away or both?
KEVIN:
Well, actually it was prior to her being diagnosed because the symptoms, the characteristics don’t show up immediately when a Rett child is born. They grow normally, they learn to speak and walk and feed themselves and then depending on how severe the characteristics are—they are different in every child—is when the progression starts to slow down and the regression starts. At that point something’s wrong and alarm goes off and where do you go? You go to your pediatrician.
TAJCI:
Right.
KEVIN:
The pediatrician doesn’t know what Rett Syndrome is, so he says to me, “Everything’s going to be fine. I think your daughter is lazy but she’s going to be fine.” And so it doesn’t take very much longer after that when she starts losing her vocabulary to realize, “I don’t think he knows what he’s talking about.”
TAJCI:
Right.
KEVIN:
So you have then it gets real scary then. And then you have to search for somebody that has the answers. And there’s a lot of places to look and obviously I looked up many, many times for answers and I wasn’t getting them from God and I wouldn’t be getting them from my doctors so then it finally gets to a point where, I mean that’s a turning point.
TAJCI:
Yes.
KEVIN:
Hands down. And then believe it or not there is a strange relief, but the pain changes because when you find out what is wrong then you feel a little bit relieved because now you know what you’re dealing with. Now the doctors can tell you. But then, then that’s when you have you become aware of what the rest of her life is going to be like in the rest of ours.
TAJCI:
It’s very important, the work you’re doing, raising awareness for a rare disease—to give it a weight, especially the cure is possible. It’s there and you can see it. So from on that level thank you on that just universal level. But I also want to thank you for, you know, for talking about it because I know for me as a mother we don’t want to talk about
KEVIN:
Well it’s hard for me to talk about it. I mean it gets me, you know, I mean that the pain is still here. It’s up to here. But it has to be done, you know? People go through a lot of painful things to help other people and that’s what we’re doing with this book.
TAJCI:
Pain is part of life. We can’t, no matter how hard we try to numb it or distract from it or run away from it, we can’t. So I just want to thank you for, you know, for embracing the pain and sharing it and saying, “No, I feel it but I’m not going to dwell in it. I’m gonna go in and fight and look for a cure.”
KEVIN:
Well, you know what’s really special? And I know we haven’t said a whole lot about all the artists, we’re not going to name a bunch of artists, but when people get to see the book and they realize how many artists have come together, there’s a lot of these artists in here that have suffered a tremendous amount of pain themselves
TAJCI:
Yes.
KEVIN:
With all different types of relationships, whether it be mothers and fathers and brothers and sisters and daughters and so that’s one thing the artist, when they get the message, all these artists got the message. They all came together for it.
TAJCI:
And that’s the miracle of this whole thing. When I received your book, you know, I, of course, I know a lot of his artists from, you know, just from loving their music and I was like all and there’s a turning point and there is a great turning point story. And to be connected in this wonderful cause. Thank you for you thank you for the music.
TAJCI:
So this is gonna be fun. One word answers, ready?
KEVIN:
Yeah, this is new to me. Go ahead.
TAJVI:
Okay ready? What makes you most alive?
KEVIN:
Air
TAJCI:
What do you love the most?
DAVID:
My wife
TAJCI:
Nice. What are you most afraid of?
KEVIN:
Death.
TAJCI:
What is your biggest challenge?
DAVID:
Selling books.
TAJCI:
Your favorite playing activity?
KEVIN:
Music
TAJCI:
Favorite instrument?
DAVID:
Guitar.
TAJCI:
How does music make you feel?
KEVIN:
Fabulous.
TAJCI:
Oh good. In the next five years you want to experience?
DAVID:
Success with the book
TAJCI:
Oh! Ballads or the up-tempos?
KEVIN:
Both.
TAJCI:
Jazz or country?
DAVID:
Jazz.
TAJCI:
Guitar or piano?
KEVIN:
Guitar.
TAJCI:
Black and white or color?
DAVID:
Black and white.
TAJCI:
Hearing or seeing? If you could only choose one?
KEVIN:
Seeing. I have to see my children.
TAJCI:
City or country?
DAVID:
Country.
TAJCI:
Morning or evening?
KEVIN:
Evening.
TAJCI:
Favorite food?
DAVID:
Oh, I don’t know. BBQ.
TAJCI:
Texas BBQ?
DAVID:
There you go.
TAJCI:
You are most grateful for?
KEVIN:
My children
TAJCI:
All our world needs is
DAVID:
Peace.
TAJCI:
If I could abolish anything from the earth it would be
KEVIN:
Rett Syndrome.
TAJCI:
And one last question for both of you. This year I claim
DAVID:
I claim dedication to finding a cure.
KEVIN:
I dedicate the rest of my life to finding a cure for Rett Syndrome.
TAJCI:
Thank you so much. The song you’re going to do for us
KEVIN:
I’m going to do it here for you. Do you want me to tell you about it or do we wait in the next?
TAJCI:
Yeah, you can.
KEVIN:
Oh, it’s a song that I wrote for Courtney. It’s called “A Tear For You”. And I didn’t know that I was going to be writing the song for a book when I did. As I wrote it in a way that would be universal to everyone’s losses. We all lose someone in life. And it’s not a dreadful song it’s a happy song because it has a lot of hope in it and a lot of great memories of Courtney. But whatever people hear the song I want to be able to reflect back on some of their own losses and have a nice day.
TAJCI:
Thank you so much. I know a lot of viewers that will really appreciate the song, “A Tear For You”. Thank you.
KEVIN:
You’re welcome.
SONG:
Today’s a good day for a memory
How long, how long has it been
I keep a picture of you in my head
There’re so many things I wish I could say to you
Here comes a moment where I start to cry
And here’s a tear for you
And here’s a tear for me
Coming together with the perfect smile
Those who know me know that I’m happy
If I only have had you for a little while
Today’s a good day to laugh out loud
When I think of you I have to
You can tell by the look in my eyes
I wasn’t ready to say goodbye to you
Here comes a moment where I start to cry
And here’s a tear for you
And here’s a tear for me
Coming together with the perfect smile
Those who know me know that I’m happy
If I only have had you for a little while
Then those who know me know that I’m happy
If I only have had you for a little while
For a little while
For a little while
Those who know me know that I’m happy
If I only have had you for a little while
TAJCI:
I am raising my hand to raise awareness for Rett Syndrome and I’m inviting you to do the same. Please visit RaisingAHand.com, check out Dave and Kevin’s amazing stories more in depth and get a copy of your own book. And the next time you go to a concert of any of these great artists ask them to sign it for you and thank them for Raising A Hand. Perhaps maybe you can even approach some more artists to do the same and take pictures and send them to Dave and Kevin. And then visit us at WakingUpRevolution.com to replay and share this episode with your friends. And I want to ask you something else: don’t run from your pain embrace it and then help someone else deal with their own just like Dave and Kevin are doing for each other and for so many other parents and people in our world. Consider becoming our patron go to patreon.com/WakingUp to help us tell more stories like these about people who are making a big difference in our world thank you so much. Raising A Hand.
OLGA:
I’m Olga Alexeeva. I’m the artist and the owner of O’Gallery. This episode was filmed at my studio at the Marathon Village, Nashville. Please visit us at OGalleryArt.com. Thank you.
