A Conversation with Michael Gomoll – HuffPost 2.1.11

Mike Ragogna: Michael, these benefit compilations are honor of your late son Joey has rallied some artists to your cause. Please would you first give us the back story on your son’s illness and how you came up with the idea for the Joey’s Song CDs?

Michael Gomoll: Joey suffered from a rare form of epilepsy called Dravet’s Syndrome. Dravet’s is a genetic disorder and, as of today, there is no effective way to control the seizures. With Dravet’s comes a spectrum of possible development delays–it is a spectrum disorder so not everyone affected has the same issues. But the most affected show some from the spectrum. The two issues that Joey dealt with that most strongly influenced the idea for the CD were one on the positive side and another on the negative. On a positive note, some Dravet’s kids show autistic qualities and withdraw and are not interested in interacting. Fortunately, that was not the case with Joey. He loved people and loved to interact, and so getting the entire room up dancing when a song he liked came on was a natural for him. So, that obviously made music as a tribute a logical idea. On the negative end, Dravet’s basically robbed Joey of his ability to speak. He had a vocabulary of about 100 words as he neared age 5. But Joey had a great memory and an ear for music. So, while he could not make the connections with words, he remembered melodies and songs with fantastic precision. He could sing melodies like a prodigy.

When Joey had his first seizures around Christmas 2005 and it became clear that epilepsy would be a part of our life–it was almost 2 years before the Dravet’s was diagnosed–I thought about trying to do a CD to help raise some money. I am a huge music fan and can’t say no to an interesting compilation for a good cause. But as often happens, life got in the way and that was always something I would start doing tomorrow. So, it was not really a big epiphany that I had after Joey died, I had been thinking about this for a while. His passing obviously changed everything and it became pretty clear to me I needed to do this for Joey and for me as a form of grief therapy.

MR: You and your son were deeply bonded by music. Would you tell us about that relationship and some more about Joey adding a personal story or two?

MG: Joey’s illness prevented him from communicating through words, but like most people, he wanted to connect with others, so music was his medium. He loved to watch shows and videos that featured kids music–Elmo, Teletubbies, the Baby Einstein series. Through these, he could sing, dance and interact with people. He also loved to sing along with others with children’s songs. He had a passion for music and it was his path to others. So, a half-hour watching an Elmo video and singing the songs was the perfect way for Joey and I to spend time.

The developmental delays that effected Joey caused him to be an “in the moment” kind of person, and to his Dad (or any other adult for that matter) that has to worry about college tuitions and braces and ballet lessons, being able to just “be” is a form of therapy. Joey forced everyone around him to just live in the moment–to play, to sing, to dance. I have said many times there was never a happier, more joyful soul than Joey. He was with us for almost 5 years, and I can count on one hand the number of times he was sad or somber.

MR: Please would you give readers an update as to what’s currently being done to battle epilepsy and where you feel there is a need for drastic improvement in treatments and medications?

This one is better handled by the Epilepsy Foundation. Our world, the last few years, was very focused on Joey’s specific, rare form. So, I cannot call myself an expert on the epilepsy world overall. But I will tell you that my impression of the status of treatment and diagnosis is still that it is more art than science. As a patient, you can spend months and even years with constant trial and error on types and dosage of medicines. It can take several months to ramp up to what is an effective dose of one medicine, only to find it does not work and then spend several months coming off of that medicine–because these are brain medications you don’t just stop and start, you have to slowly (like weeks at a time) incrementally increase and decrease dosage to try another. And during these weeks, months and years, you can be having regular, sometimes several a day, seizures that are debilitating and dangerous.

Also, I think one area that I hope our foundation will help with going forward–and I hope you feature this point in your article because I think it is really important–is around something called “respite care.” If you are a caregiver for anyone with a seizure disorder that is not effectively controlled by medicine–and I have seen reports that between 35-50% of the hundreds of thousands of epilepsy sufferers fall into that category–you are on 24/7 alert for a seizure that can cause injury or even death. And as you can guess, that means there are very few people that can help, so you can have a nice dinner or go out or see a movie. Because as a parent, you can’t just have the local teenager come over and watch your child, you wouldn’t be comfortable and neither would they. There just aren’t any services like that. In the time from Joey’s first seizure until his passing, you can count on one hand the number of times my wife and I went out to dinner–and that is only because we had a couple doctors and paramedics as neighbors that would help for those couple of nights. So, the need for the development of high quality respite care services that can provide a safe environment for epilepsy sufferers so that caregivers can get a break every now and then is really important.

I know there is a lot of work being done on medicine and treatment. I hope some focus can also be given for the caregivers. If you are the caregiver of an epilepsy patient, you NEVER relax. For 5 years, I never was without my cell phone. My wife and I started every phone conversation with a status check on Joey. You never relax and more so when you are not with the person that has the seizure disorder. So, I would ask everyone to think about that. Seizures happen any time day or night and at any moment your child can be in danger, and while science is working on cures and treatments to remove that danger, at this moment, hundreds of thousands of families live with it 24/7 and have little chance for the occasional dinner and a movie. So, I know after the first few CDs, we will begin to turn our donations and resources into helping develop some respite care support.

MR: How did you assemble this roster of artists? Are there any unique stories regarding their musical contributions?

MG: I am lucky to have developed a few personal friendships with a few folks that make their living writing and performing music. Justin Currie, the lead singer and songwriter for the Scottish band Del Amitri has been a dear friend for 15+ years. Del Amitri has had a couple hits here in the US and has had dozens of Top 40 hits in the UK. Lowen and Navarro are a talented songwriting duo that wrote “We Belong” which was a big hit for Pat Benatar in the mid-’80’s as well as songs for others. They also recorded many albums on their own and toured constantly. So, my initial plan was to reach out to these national acts, plus a few friends I have in the Madison and Milwaukee music scene and would get them to contribute a song and then sell the CD at the local grocery store, Methodist Church, and VFW hall.

Within a few days of Joey’s passing in March of 2010, I sent the note to my friends and, of course, the response was positive and wonderful. But I remember thinking about a week into the process about all of the other musicians I had met over the years in various ways–either through friends or via other means. So, I sent out a few emails to those people with a little detective work–Matthew Ryan, Eileen Rose, Michael McDermott, and a few others. I explained how I “knew” them and told them Joey’s story. Well, the three I just mentioned all responded within hours, and not only responded, but asked what else they could do, so, at this point, I realized we had something here, that Joey’s story was resonating with people.

One of the other decisions I made early in the process was to make sure our request was easy for them to say yes to. I was not asking them to go in and record a new song–although many of our artists did–all I asked was for something rare or unreleased. Since I know my music friends well and understand the process, I know they record more songs than they end up using on CDs, so they have a stash of unused songs laying around. Also, I know acts often record their live performances as well but release very few of them. I hoped by asking for rare or unreleased tracks I was making it very easy for them to go over to their computer, find a track they never released, and donate it. Now, as I said, for many of the Joey’s Song artists, that wasn’t good enough–many, many went in and recorded songs just for us. I also liked this approach because, as I mentioned to the artists, it gently forced their fans to buy our CD if they wanted to be completists. I am a music collector, and while I love hundreds of bands and artists, I have my Top 25 that I will buy anything they put out, and with our rare and unreleased mantra, I was hoping to tap into that with these artists.

Now after getting my friends and my “connections” and being overwhelmed with the response, I started working on the many of the artists I loved but had no real connection to. In hindsight, it is not surprising, but at the time, I was stunned that my musical giants–Neko Case, Robbie Fulks, Jason Ringenberg, Steve Forbert, Thea Gilmore and on and on–were all responding as well. In what can only be described as a true miracle, when we went to put together the tracks for the first two volumes, we had to pair it down from over 80 artists and 120+ songs submitted. We have Grammy winners like Duncan Sheik and Raul Malo that didn’t make the first CD. We have some exquisite tracks of cover songs that people have submitted because the legal entanglements in the record industry are overwhelming–artists, writers, publishers and labels all have say in where and how a song or recording gets used. So, while these first two volumes will always be the most special for obvious reasons, the things we are working on for the future is amazing and as I point out, this is just all being done from a basement office in a small town in Wisconsin.

MR: Are there any recordings on the Joey’s Song releases that speak to you perhaps more deeply than the others?

MG: There are great stories behind each track and the CD was not really done with any theme per se. But music is often about love, loss and hope, and that is the Joey’s Song story itself. So, while none of these tracks were written about Joey’s story, you can hear his story in each track, and I could easily tell you about each track in great detail and they are all extremely dear to us, but there are a couple I will call out. The first is “If Your Tears Don’t Make A Sound” by Del Amitri. I think Justin Currie is one of the greatest songwriters of our generation. I am a bit biased as he is also a dear friend, but his ability to mix melancholy subjects with irresistible melody is unmatched. And while the “tears” is about adult love with very little imagination, it can sound as if it was written for us. If there is an undiscovered Top 10 hit on our compilation, it is that song. Thea Gilmore’s “The Difference” is just a stunner in my book. The beauty and the fragility of the lyrics and message is beyond description. The sparse arrangement only adds to the effect, and her voice in general and this performance is the ultimate vehicle for her beautiful song. On the kids CD, certainly Steve Forbert’s cover of “Puff The Magic Dragon” is amazing. Steve is an absolute legend and makes this classic his own.

But there is another reason why this contribution means so much. Peter Yarrow, who wrote the song, is known to be very protective of the song and rightly so and he doesn’t grant permission easily. But when we got the OK from a true legend like Peter to use his song via Steve’s delightful performance, it was such vindication for us. Lastly, Matthew Ryan’s version of “You Are My Sunshine” is everything I could hope for when people go in and do record something new for us. Matthew took a song all of us know from childhood and made it his own. That is why the kids CD is so special, all of these artists that made their mark in the adult music world take and aim their talents at these kids songs…it’s really something else. And I would be remiss if I didn’t mention Eileen Rose’s version of the old folk song “Oh Johnny LeBeck.” I didn’t know this song until she sent it to use, but one of it’s charms is that it reminds me of the old fairy tales we all grew up with. A little bit dark, a little bit scary, but a ton of fun and an irresistible performance. It is a song in the classic Brothers Grimm school.

MR: When will more CD volumes become available?

MG: Well, we are hoping to release at least two volumes every year for the next 5 years. We have no shortage of songs or artists to donate them. Up until now, this effort has been a two-person show between myself and Kevin Baird, my dear lifelong friend and Executive Director of the foundation, and we have been learning as we go. We are not even 10 months since Joey died and we have the first two volumes done and ready to ship. As I tell people, we basically started a record label and recruited a roster in 10 months–not the normal 5 years. But I think we have learned a ton and hope to be able to now apply all of the bumps and bruises from this first year and keep releasing high quality CDs for a while. Our goal is two or three a year for the next 5 years, and then our business plan is donate the “Joey’s Song” brand–the CDs and their revenue stream–directly to our named charities.

I want to be clear for a minute here. Even though Kevin and I have done the legwork around the foundation and the CD, there are several professionals from the music business that have donated all of their time and skills to help us not go too far astray. Cheryl Pawleski, Bryan George, Joe Vent, and Greg Allen all donated 100% of their time and effort to help us get the CDs together and helped talk to all of the companies along the production chain to get the CD produced at the lowest costs possible. So, other than a few support services like PR and production, every penny paid for the CDs goes directly to the named charities. We have no paid employees at the foundation.

MR. What is your advice to parents who also have children suffering from Dravet’s Syndrome or any other form of epilepsy?

MG: Wow, well for Dravet’s parents my messages is simple. Focus on what “is” and today. It is easy to spend time focusing on what can be perceived as bad breaks for your child, but just revel in what they can do and everything will be as wonderful as you can hope. Also, try not to worry about tomorrow. Dravet’s is a path of unknowns and worrying about it does no good. The road for a Dravet’s family is not an easy one, but it can be a joyful one.

For epilepsy parents in general, it is the same as any parent of a child fighting an illness. You must be your child’s strongest advocate–both in the community, at school and most importantly, with your medical support. While all of these people have the best of intentions, they by nature must generalize and categorize, and there is nothing general or categorical about your child.