TOPIC: ALS (Lou Gehrig's Disease) and LOVE
A Father With ALS Offers Up a Song to Leave Behind for his Daughter
A Father With ALS Offers Up a Song to Leave Behind for his Daughter
| "Bright Eyes" - Free Download |
Andy today A SONG WIH A LIFE OF ITS OWN
WOW! This month's featured commission is one of those rare and wonderful stories where a song takes on a vector and velocity that far exceeds anything I could have wished or imagined for it! The heart of this story is Andy and his daughter Rachel. But the fireworks around the song are really quite incredible! To wit: as I write this, I am days away from performing this song, in a private concert, for the entire Board of Directors of The ALS Association. And I am just two weeks away from being flown to Washington DC (being put up at the Plaza!) to perform this song before a crowd of upwards of a thousand people at the ALS Association's National Public Policy Conference. The evening's agenda? Two US Senators receiving awards and...little old ME! But the heart of this story is not about private concerts or Boards of Directors or Senators or crowds of thousands. The heart of this story is Andy, and ALS, a strikingly debilitating disease, and Rachel, Andy's teenaged daughter, and love. Love is definitely the star of the show. Read on to learn just how much heart there is in this story. And see to what far and fantastic corners, when it is deep and real, love can reach.
(Brace yourself--this write-up is an extensive one, whch perhaps underscores how much this experience has touched me.)
WOW! This month's featured commission is one of those rare and wonderful stories where a song takes on a vector and velocity that far exceeds anything I could have wished or imagined for it! The heart of this story is Andy and his daughter Rachel. But the fireworks around the song are really quite incredible! To wit: as I write this, I am days away from performing this song, in a private concert, for the entire Board of Directors of The ALS Association. And I am just two weeks away from being flown to Washington DC (being put up at the Plaza!) to perform this song before a crowd of upwards of a thousand people at the ALS Association's National Public Policy Conference. The evening's agenda? Two US Senators receiving awards and...little old ME! But the heart of this story is not about private concerts or Boards of Directors or Senators or crowds of thousands. The heart of this story is Andy, and ALS, a strikingly debilitating disease, and Rachel, Andy's teenaged daughter, and love. Love is definitely the star of the show. Read on to learn just how much heart there is in this story. And see to what far and fantastic corners, when it is deep and real, love can reach.
(Brace yourself--this write-up is an extensive one, whch perhaps underscores how much this experience has touched me.)
Andy with Rachel in easier days AN IDEA COME TO LIFE AROUND ALS
Before this song even existed, it was something I felt absolutely, almost inexplicably compelled to create. Unlike most of my projects, where the person commissioning the song seeks me out with their story, the "voice" of this song--Andy--is a member of my extended family. And it was I who approached him with the idea of creating a "Legacy" song from him to his young daughter Rachel. Andy is one of the hundreds of thousands of people in the world today who suffers from ALS (a.k.a. Lou Gehrig's Disease--a crushing fatal illness which leaves the mind sharply intact while slowly rendering all of the body's muscles mute). Like some others whose lives intersect with someone who suffers with ALS, I experienced a kind of self-imposed "locked out" feeling on the rare occasions when I saw Andy at extended family gatherings and watched his ALS progress. It became increasingly difficult for him to walk. It became increasingly difficult for almost all of us, except his phenomenal wife and his teenaged daughter, to hear beyond the growing slur that seemed to be invading his speech. It became increasingly difficult for me to know just how to continue to approach him. And yet eventually, as I sat with the distance, I felt compelled to contact my husband's family about the idea of creating a song in Andy's "voice." The family rallied, with each member donating significantly to help cover musician costs and studio time. Suddenly I had the funds. And yet, even so, I felt unsure about how to approach Andy. In a rare serendipitous turn, the very next day after I secured the funding, an email came from Andy's wife Ellen announcing that Andy's local paper in Virginia had written an article on him highlighting--AHA!--his ability via a special computer program to communicate through email. (See Virginian-Pilot article about Andy). I got my courage up and wrote to Andy with my song concept. His wife Ellen reported back to me that when he heard about the idea for the song, Andy openly wept. (It is one aspect of ALS that the barriers that hold emotions "in place" tend to come crashing down, such that those with ALS are often far more emotionally expressive than the rest of us. I believe that Andy was deeply touched by the idea, and that his emotional display made plain what many of us might feel but "hold in.") Andy then wrote to me himself to let me know he was definitively on board. We were on our way!
A RARE AND ASTONISHING INTERVIEW PROCESS
Writing to Andy via email started out stiff and awkward. It seemed that he could manage about one question a day. My typical song interviews are intense, build on themselves, and last a couple of hours. As we lumbered through, it began to dawn on me this interview was going to take a month. But round about our forth or fifth exchange, something began to happen. I don't know what it was exactly, but something softened, some connection between us came to life, and suddenly, I WAS IN! What do I mean by this? I don't know. I only know that something magical seemed to happen. I found myself running home each day and checking my email with great anticipation, hoping he had written yet again. His answers became longer, more flowing. He got increasingly wide open about everything...his views on death, his perspectives on life, and, perhaps most poignant of all, his insights into his love for his wife, and for his teenaged daughter Rachel, about whom and for whom the song was being composed. I felt like I was being granted access to a rare and astonishing place--inside the mind of someone whose body was wasting away but whose mind was not only intact but seemingly expanding. Was this possible? I would never, ever, in a thousand million years wish this disease on ANYONE. But I will say this: I found in the space Andy and I created through the e-waves, in the pacing of this day-to-day unusual dialogue, that I was getting to know Andy in a way I never had before. Was he more open? Was I more tuned in? I don't know. What I know is, it is a rare and mystical thing when one human being openly invites another inside their world. Suddenly, it was not about "sickness." It was not about "health." It was about one human being connecting with another, in the name of love. Andy shared with me his desire for Rachel's song to celebrate who he was--who the two of them were--when he was healthy and physically strong. He shared photos, like the one below of the two of them gazing into each others' eyes, which inspired the name for the song, and part of its central theme--"Bright Eyes."
Andy wrote candidly about the idea of death and what it means to him. He wrote about the idea of what it might mean to become an angel, and to be there on some other level for his wife and for his daughter. And he steered me to a letter from a civil war soldier to his wife in the final hours of his life, which I not only read and was moved by (Civil War Letter) but which, coupled with a favorite quote of Andy's about the meaning behind the burdens we each carry, ended up inspiring the song's musical highpoint/ bridge:
Before this song even existed, it was something I felt absolutely, almost inexplicably compelled to create. Unlike most of my projects, where the person commissioning the song seeks me out with their story, the "voice" of this song--Andy--is a member of my extended family. And it was I who approached him with the idea of creating a "Legacy" song from him to his young daughter Rachel. Andy is one of the hundreds of thousands of people in the world today who suffers from ALS (a.k.a. Lou Gehrig's Disease--a crushing fatal illness which leaves the mind sharply intact while slowly rendering all of the body's muscles mute). Like some others whose lives intersect with someone who suffers with ALS, I experienced a kind of self-imposed "locked out" feeling on the rare occasions when I saw Andy at extended family gatherings and watched his ALS progress. It became increasingly difficult for him to walk. It became increasingly difficult for almost all of us, except his phenomenal wife and his teenaged daughter, to hear beyond the growing slur that seemed to be invading his speech. It became increasingly difficult for me to know just how to continue to approach him. And yet eventually, as I sat with the distance, I felt compelled to contact my husband's family about the idea of creating a song in Andy's "voice." The family rallied, with each member donating significantly to help cover musician costs and studio time. Suddenly I had the funds. And yet, even so, I felt unsure about how to approach Andy. In a rare serendipitous turn, the very next day after I secured the funding, an email came from Andy's wife Ellen announcing that Andy's local paper in Virginia had written an article on him highlighting--AHA!--his ability via a special computer program to communicate through email. (See Virginian-Pilot article about Andy). I got my courage up and wrote to Andy with my song concept. His wife Ellen reported back to me that when he heard about the idea for the song, Andy openly wept. (It is one aspect of ALS that the barriers that hold emotions "in place" tend to come crashing down, such that those with ALS are often far more emotionally expressive than the rest of us. I believe that Andy was deeply touched by the idea, and that his emotional display made plain what many of us might feel but "hold in.") Andy then wrote to me himself to let me know he was definitively on board. We were on our way!
A RARE AND ASTONISHING INTERVIEW PROCESS
Writing to Andy via email started out stiff and awkward. It seemed that he could manage about one question a day. My typical song interviews are intense, build on themselves, and last a couple of hours. As we lumbered through, it began to dawn on me this interview was going to take a month. But round about our forth or fifth exchange, something began to happen. I don't know what it was exactly, but something softened, some connection between us came to life, and suddenly, I WAS IN! What do I mean by this? I don't know. I only know that something magical seemed to happen. I found myself running home each day and checking my email with great anticipation, hoping he had written yet again. His answers became longer, more flowing. He got increasingly wide open about everything...his views on death, his perspectives on life, and, perhaps most poignant of all, his insights into his love for his wife, and for his teenaged daughter Rachel, about whom and for whom the song was being composed. I felt like I was being granted access to a rare and astonishing place--inside the mind of someone whose body was wasting away but whose mind was not only intact but seemingly expanding. Was this possible? I would never, ever, in a thousand million years wish this disease on ANYONE. But I will say this: I found in the space Andy and I created through the e-waves, in the pacing of this day-to-day unusual dialogue, that I was getting to know Andy in a way I never had before. Was he more open? Was I more tuned in? I don't know. What I know is, it is a rare and mystical thing when one human being openly invites another inside their world. Suddenly, it was not about "sickness." It was not about "health." It was about one human being connecting with another, in the name of love. Andy shared with me his desire for Rachel's song to celebrate who he was--who the two of them were--when he was healthy and physically strong. He shared photos, like the one below of the two of them gazing into each others' eyes, which inspired the name for the song, and part of its central theme--"Bright Eyes."
Andy wrote candidly about the idea of death and what it means to him. He wrote about the idea of what it might mean to become an angel, and to be there on some other level for his wife and for his daughter. And he steered me to a letter from a civil war soldier to his wife in the final hours of his life, which I not only read and was moved by (Civil War Letter) but which, coupled with a favorite quote of Andy's about the meaning behind the burdens we each carry, ended up inspiring the song's musical highpoint/ bridge:
But my courage will not halt or falter now
I will love you long past my last breath of air
God does not give us the burdens we deserve
But the ones we can bear
Andy in his home sharing the song with key ALS Association Top Brass: CEO Gary Leo, Ken Nicholls, Executive Director of ALSA DC/MD/VA Chapter and Scott Golden, DC/MD/VA Chapter President AN UNEXPECTED MAGICAL TWIST: i-Tunes AND THE CEO OF ALSA
When the song was completed (such a glorious and surprisingly uplifting writing experience!), I shared it with Andy and Ellen. They LOVED it! I also shared it with Keith Hampton, longtime friend, frequent musical collaborator, and President of Brave Records. Keith not only played on the studio recording, but he suggested that Brave Records host an ALS fundraiser through iTunes, donating 100% of the proceeds from the song to the cause of Andy's choice. That's where the story gets really serendipitous. I contacted Andy, Andy identified The ALS Association as his recipient of choice, he contacted them (ALSA), and, through some inexplicable twist of fate, it just so happened that the Regional President of ALSA as well as the National President, from California, were in town and were close to Andy's house. They drove over to Andy's and asked to hear the song in person! The photo below is a favorite of mine, and one I'll always cherish. You can see Andy, in his wheelchair, with Gary Leo, National CEO, on the right, and Ken Nicholls, Regional President on the left. As Ellen shared with me later, all three were in tears together as they held onto each other and listened to the song.
Ken contacted me shortly thereafter to offer to fly me and Keith out to Washington DC to perform the song for the thousand-or-so who will be gathering there in mid-May, during ALS Awareness Month, at the National Public Policy Convention. Gary Leo, the National CEO of The ALS Association, called me at home to ask, as well, if I would put on a private concert of the song at a gathering of the Board of Directors here in Boston. Gary is the one who sent me the photo, which Ellen happened to snap. And below is a favorite line of mine from Gary's accompanying email to me and my husband, Jim: "This photo may, just may, reflect the emotional experience we all had listening to Anna's song, "Bright Eyes" with Andy and Ellen. Thank you for that remarkable and unforgettable moment." One of the more serendipitous elements of the timing of all of this, I think, is that May is ALS Awareness Month, nationwide! So, Happy ALS Awareness Month to all!
EPILOGUE, AND A WORD ABOUT ELLEN
The really odd thing is that this all happened so fast--the CEOs driving over and hearing the song so immediately after Andy had first heard it himself--that the ALSA folks had actually ended up hearing the song before Andy had even had a chance to share it with its intended recipient, his daughter, Rachel. He had been waiting for just the right moment, and I was sending along coaching tips ("Remember, she's young--she may not be able to fully take it in right away. It may have to be enough for you to know that it will come to mean something to her over time. Don't worry if she doesn't have a strong reaction to it. Songs that are written specifically for someone are a rare and unusual thing, and it can take time for it all to make sense and sink in.") I needn' t have worried. A few days later an email appeared on my website from none other than Rachel herself, saying, " Bright Eyes is a wonderful song. I cry almost every time I hear it or think about it. Thank you." For my two cents, you could quadruple the size of the crowd in DC and it would have nothing on the joy I got from getting this simple one-line email. My heart leapt and I let out a long, satisfied exhale and smile. Mission accomplished. Connection made. Amen.
And one final word here, not about Rachel, for whom the song was written, or Andy, who inspired it, but about his wife, Ellen. Few of us can probably fathom what the adult in the innermost circle of an ALS patient is called upon to do. Far beyond the unending and unimaginable physical requirements of being the "body" for one who is losing their ability to use their own, there is a kind of spiritual dimension, I think, to the task. It is in the experiences in which we find we must dig down into the deepest parts of our being in order to cope, that we learn just how deep our depths can go. I have watched Ellen, always a kind, gentle, good, loving, devoted wife and mother, transform into someone who is, to me, an absolute inspiration. She is strong; she is worthy of this phenomenal role in which, over the last four years, she has found herself cast. It is unclear to me exactly how she does it. But her courage, and her strength, and her repeatedly replenishing reserves can teach us all a lot about what is possible in the face of adversity, with an outlook based on love. Here's to Ellen, and to all the inner-circle caretakers out there who rise up to meet the illness of a loved one day after day after day, offering up from their depths an astonishing array of gifts. There are low points, there are low moments; there must be, at times, points of absolute despair. But in the end, there is love, and, always and forever it seems, love will save the day. Here's to you, all of you, who have taken this journey or one like it. I am sure it has changed you, and I am sure, through your part in it, you are helping to change the world.
When the song was completed (such a glorious and surprisingly uplifting writing experience!), I shared it with Andy and Ellen. They LOVED it! I also shared it with Keith Hampton, longtime friend, frequent musical collaborator, and President of Brave Records. Keith not only played on the studio recording, but he suggested that Brave Records host an ALS fundraiser through iTunes, donating 100% of the proceeds from the song to the cause of Andy's choice. That's where the story gets really serendipitous. I contacted Andy, Andy identified The ALS Association as his recipient of choice, he contacted them (ALSA), and, through some inexplicable twist of fate, it just so happened that the Regional President of ALSA as well as the National President, from California, were in town and were close to Andy's house. They drove over to Andy's and asked to hear the song in person! The photo below is a favorite of mine, and one I'll always cherish. You can see Andy, in his wheelchair, with Gary Leo, National CEO, on the right, and Ken Nicholls, Regional President on the left. As Ellen shared with me later, all three were in tears together as they held onto each other and listened to the song.
Ken contacted me shortly thereafter to offer to fly me and Keith out to Washington DC to perform the song for the thousand-or-so who will be gathering there in mid-May, during ALS Awareness Month, at the National Public Policy Convention. Gary Leo, the National CEO of The ALS Association, called me at home to ask, as well, if I would put on a private concert of the song at a gathering of the Board of Directors here in Boston. Gary is the one who sent me the photo, which Ellen happened to snap. And below is a favorite line of mine from Gary's accompanying email to me and my husband, Jim: "This photo may, just may, reflect the emotional experience we all had listening to Anna's song, "Bright Eyes" with Andy and Ellen. Thank you for that remarkable and unforgettable moment." One of the more serendipitous elements of the timing of all of this, I think, is that May is ALS Awareness Month, nationwide! So, Happy ALS Awareness Month to all!
EPILOGUE, AND A WORD ABOUT ELLEN
The really odd thing is that this all happened so fast--the CEOs driving over and hearing the song so immediately after Andy had first heard it himself--that the ALSA folks had actually ended up hearing the song before Andy had even had a chance to share it with its intended recipient, his daughter, Rachel. He had been waiting for just the right moment, and I was sending along coaching tips ("Remember, she's young--she may not be able to fully take it in right away. It may have to be enough for you to know that it will come to mean something to her over time. Don't worry if she doesn't have a strong reaction to it. Songs that are written specifically for someone are a rare and unusual thing, and it can take time for it all to make sense and sink in.") I needn' t have worried. A few days later an email appeared on my website from none other than Rachel herself, saying, " Bright Eyes is a wonderful song. I cry almost every time I hear it or think about it. Thank you." For my two cents, you could quadruple the size of the crowd in DC and it would have nothing on the joy I got from getting this simple one-line email. My heart leapt and I let out a long, satisfied exhale and smile. Mission accomplished. Connection made. Amen.
And one final word here, not about Rachel, for whom the song was written, or Andy, who inspired it, but about his wife, Ellen. Few of us can probably fathom what the adult in the innermost circle of an ALS patient is called upon to do. Far beyond the unending and unimaginable physical requirements of being the "body" for one who is losing their ability to use their own, there is a kind of spiritual dimension, I think, to the task. It is in the experiences in which we find we must dig down into the deepest parts of our being in order to cope, that we learn just how deep our depths can go. I have watched Ellen, always a kind, gentle, good, loving, devoted wife and mother, transform into someone who is, to me, an absolute inspiration. She is strong; she is worthy of this phenomenal role in which, over the last four years, she has found herself cast. It is unclear to me exactly how she does it. But her courage, and her strength, and her repeatedly replenishing reserves can teach us all a lot about what is possible in the face of adversity, with an outlook based on love. Here's to Ellen, and to all the inner-circle caretakers out there who rise up to meet the illness of a loved one day after day after day, offering up from their depths an astonishing array of gifts. There are low points, there are low moments; there must be, at times, points of absolute despair. But in the end, there is love, and, always and forever it seems, love will save the day. Here's to you, all of you, who have taken this journey or one like it. I am sure it has changed you, and I am sure, through your part in it, you are helping to change the world.
Anna (4th from right) with her extended family at an ALS Walk in Columbus, Ohio, 2005 THE RECORDING STORY
This song was recorded at Straight Up Music by Larry Luddecke, who also created both of the keyboard tracks you hear on the song. As mentioned, the guitar parts as well as backing vocals were co-created and performed by my good friend and longtime musical collaborator, Keith Hampton, President of Brave Records and a recording artist in his own right (check out Chance and Change, his new live album, or Hopefire --that's me doing backing vocals on Track #1). We had a lovely, easy time recording it. This song was just ready to get born!
THE ARTIST
As it happens, I got my first taste of the astonishing ALS support community two years ago, two years into Andy's diagnosis, when our family was visiting our family roots in Ohio. The photo above was shot just before we participated in an ALS walk. The energy there was loving and powerful. ALS Patients and the people who love them are a pretty astonishing crowd. Little did I know then that I would end up having the chance to meet hundreds and hundreds more such folks, as a result of "Bright Eyes," only a few short years later. Well, you made it this far in the reading, so here is my standard "AHT" blurb: Anna Huckabee Tull is an award-winning Boston Singer-Songwriter with six national CD releases to her credit, including the just-released "Every Day," a collection of songs exploring the relationships between parents and children, young and old. Anna is also a Psychologist and Life Coach, with a Master's Degree in Spiritual Psychology and Applied Psychology. [More about Anna]
This song was recorded at Straight Up Music by Larry Luddecke, who also created both of the keyboard tracks you hear on the song. As mentioned, the guitar parts as well as backing vocals were co-created and performed by my good friend and longtime musical collaborator, Keith Hampton, President of Brave Records and a recording artist in his own right (check out Chance and Change, his new live album, or Hopefire --that's me doing backing vocals on Track #1). We had a lovely, easy time recording it. This song was just ready to get born!
THE ARTIST
As it happens, I got my first taste of the astonishing ALS support community two years ago, two years into Andy's diagnosis, when our family was visiting our family roots in Ohio. The photo above was shot just before we participated in an ALS walk. The energy there was loving and powerful. ALS Patients and the people who love them are a pretty astonishing crowd. Little did I know then that I would end up having the chance to meet hundreds and hundreds more such folks, as a result of "Bright Eyes," only a few short years later. Well, you made it this far in the reading, so here is my standard "AHT" blurb: Anna Huckabee Tull is an award-winning Boston Singer-Songwriter with six national CD releases to her credit, including the just-released "Every Day," a collection of songs exploring the relationships between parents and children, young and old. Anna is also a Psychologist and Life Coach, with a Master's Degree in Spiritual Psychology and Applied Psychology. [More about Anna]
BRIGHT EYES
Bright eyes, thousand watt smile
Bright skies of the Coronado miles and miles of
Sailing out on the bright sea
Sailing along my bright, bright-eyed girl and me
It was like nothing to be sailing along
Watching you laughing; find myself laughing and strong
For you
Pushing you on a swing
Holding you close and then setting you free
The simple things, what time is taking
The hugs I can't offer you as I watch this body wasting
It was like nothing to lift you to the sky
It was like everything to see me through your bright,
Bright eyes
But my courage does not halt or falter now
I will love you long past my last breath of air
God does not give us the burdens we deserve
But the ones we can bear
So watch for me, eternally
Feel for me in the passing breeze
One day I’ll be sailing free
Right beside you, and you will see (with your…)
Bright eyes, and your thousand watt smile
Under bright skies, you’ll see the never-ending miles and miles of
My love, out on life’s sea
Sailing beside you eternally
My bright-eyed girl
My bright-eyed girl
My bright-eyed girl
And me
© 2007 Anna Huckabee Tull. The rights for this song are filed and registered with the United States Copyright Office as a Sound Recording by Anna Huckabee Tull. Copies of these songs may not be sold or bartered. But sharing? Sharing is all good!
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