This is gonna be long.
I find myself writing often about circumstances that surrounded my daughter, Liz’s death. It’s no secret that the most devastating event in a parent’s life is when their child predeceases them. Even though her early demise wasn’t unexpected, it was still a shattering blow to my entire world. It was traumatic. And when it happens in front of you, well, nothing in your life can prepare you for that.
Watching Liz die was a catalytic experience. I think of my life as “Before Liz” & “After Liz” because, assuredly, I became a different person after she succumbed. I won’t define those changes here because I am sure that, in telling you about who I was “after” I will try to make myself seem more heroic, either through hubris or humility but, rest assured I become the hero in that saga and I think it’s best if you come to that conclusion on your own.
I was able to set up a scholarship in her name. That was good. (Heroic, right?) Every year since she died we give two college bound kids with Cystic Fibrosis each $1000 to put toward their education. And every year when we make that determination I get to call the recipient and talk to them, briefly, about why they were chosen, who Liz was and why we think they represent her and her values and the way she saw the world. And it gets weirder every year as I get further and further away from her death and it’s less impactful. There are days, hell, weeks that go by where I don’t think of Elizabeth at all. Unless I happen to look above the bookcase in the living room and see her picture or if Zoe makes a face that reminds me of her half-sister, whom she resembles quite a bit. And during the time of the year when the applications for the scholarship come in.
I guess it’s not very heroic to admit: No, I don’t think of my late daughter every day. I think we want to hear the opposite but the truth is life marches on.
When the memories come back, though, they are fierce. The very first time I put on a CPAP machine to help with my apnea (I had an apnea/hypopnea index of 52, which means that I was, basically, waking up 52 times an hour for most of my adult life. If you know me and you didn’t know this you are right now probably saying, “Oh! That’s why he was such an asshole so much of the time! He never slept.”) I experienced a montage of flashbacks to the time Liz was required to wear one during her last days in the hospital. The images came like they do in horror films when that character touches the rune or relic for the first time and sees everything the relic or rune has experienced all in rapid succession, blinding fast cuts and sounds of rips and tears.
And I don’t know if it’s because they are the most vivid but the first memories of Liz that flood back (outside of the CPAP events) are always of her in the hospital.
On that gurney.
Coughing and crying, “I hate this life! I hate this life!”.
Wailing in the infant bed as nurses administer a series of treatments.
Teaching her to walk by having her hold on to the oxygen tank to steady herself.
The moment she crashed, her heart exploded to 200 bpm and we lost her as I shouted her name, “Lizzie!!!” and had to be removed from the room.
The go-to memories are never the better times we spent together, that is the impact of a long term illness like CF. Being there at the end has only seemed to congeal the hospital as the fulcrum of my life with my daughter.
As you can imagine, I never want to experience Cystic Fibrosis again.
To a music lover such as I, Liz’s death was also a prison. I passed my passion on to her as best I could, exposing her to songs and albums, old and new. She liked Queen, loved Green Day (As I mentioned) and wondered if the lead singer for The Decemberists was mentally challenged. (She used a different word but I thought that a bit impolitic for here). And what that meant, for me, is that just about all the music I owned to that point carried with it some connection to her. Most of all Green Day (whom I would not be able to listen to for 4 years). And, not that I was searching his music anyway but, Daughtry. I could not allow myself to even give him a chance because Liz loved American Idol and we would talk about it together and we were both so excited that a real rocker was on the show. She called me from the hospital when he was booted and the message I heard on my voicemail was “AmericanIdolAmericanIdolAmericanIdol!!!!”.
The list would go on. My musical past was embargoed.
Fortunately, I knew a lot of people who would still talk about music and, through them, I discovered some great stuff. 2006 seems to have been a watershed year for rock, although no one really mentions it. Arctic Monkeys’ “Whatever People Say I Am, That’s What I am Not”. The Hold Steady’s “Boys & Girls in America”. The Thermals’s “The Body, The Blood, The Machine”. The Fratellis’s “Costello Music”. It was a damned good time to be forced to find something new to hear.
One album that caught my ear that year was actually released the year before and was a recommendation from my trainer at the gym. He was also the manager of a local LA band called Dalton Grant that sometimes played on the same bill with my group, Throttle Back Sparky and he was in love with a record by a Brooklyn based rock band steeped in a sound that reminded me of the late 80s group Love and Rockets or the more accessible records by The Cure. The band and the album were Nightmare of You. They would never release anything remotely as special as their first record but that first record…wow.
Why is it so good?
First off, there are tremendous hooks. “The Days Go By So Slow”, “Dear Scene, I Wish I Were Deaf”, these are two epic, hook-laden, retro-80s, lush emo rock songs, deceptively steeped in 50s songcraft. The way singer Brandon Reilly wraps his throat around wordplay and rhyme schemes of, say, Thumbelina, only add to the catchiness of the songs.
The album is relentless in it’s pop-hook assault. The electro-nightclubbing Simple Minds-esque “My Name is Trouble” and quasi-college Indie “Why Am I Always Right?’, the brilliant “I Want to Be Buried in Your Backyard”, paint vivid pictures of desperation, loss, death, love and all of them make you want to lower the top and sing along on a coast drive.
Does it stop?
The skiffle pop of “Ode to Seratonin”.
The faux-country of “Marry Me”.
The urgent “In the Bathroom is Where I Want You”.
The driving “The Studded Cinctures”.
It’s amazing that every single song on this album is great. It’s like a best of record by a band you’ve never heard of but wish you did so you could collect all the rest of their colection. Except that this is the debut.
Closing on the french cabaret inspired, “Heaven Runs on Oil”, well, if you can’t tell, I think this album is an unknown classic.
I am so glad that I am writing about NoY because it’s just another excuse to fire it up on the Sonos and fill my house with an album whose songs never tire for me.
And I was listening to Brandon Reilly’s breathy, neo-british voice at that same gym when the most important call of my post-Liz life came in and would subsequently cement this album as a positive reinforcer of all the things good that life can be:
Shortly after Liz died Beth and I decided to start a family of our own. When I say shortly I mean SHORTLY. Zoe was born 11 months after Liz died. And early into the pregnancy we decided to have some genetic testing done.
Beth scored near perfect. Balloons should’ve dropped from the ceiling as the Commission of Perfect Procreation celebrated the genetic excellence of her family line. No congenital or latent diseases. No alcoholism or cancer or mental illness, nothing. Just good Scottish & Australian lines.
If they could’ve the lab would’ve put a stamp on it with an illustration of a baby with a circle and a slash through it.
Cancer? Yep. Psoriasis? Sure. Diabetes? We got some of that. Heart disease? What else does a 49 year old man die of in his sleep? Mental illness? I will not name names but, yes, there has been some shock therapy in my family in the past.
Quite a mess.
And, of course, Cystic Fibrosis.
To our benefit, though, one of the legacies of Liz was that we had her codes. We knew the EXACT gene mutation to test for to be sure that we wouldn’t repeat her disease with a new kid.
“So, these are the 97% of the mutations that we test for. The other 3% are so rare that we don’t regularly run the panel for them.” Is what the genetics counselor said to us.
“Great.” I said, turning to my left, I looked at Beth, smiled and said, “We’re good.”
Cue the music swell, cut to the family with the new, happy, cooing baby….
“Well…” Beth interrupted this narrative, “My husband is the most neurotic person I know.”
This is true.
“Run the full panel.” She said.
So, they did.
And a few days later we got the news:
“Beth is actually a carrier of the rarest Cystic Fibrosis gene.”
Wait. What? How? What???
CF is a recessive disease. BOTH parents need to pass on the gene mutation to the offspring for the child to be sick. One parent or the other could pass the gene while the other didn’t and the child would be a carrier or they could both not pass on the mutation and the child would be completely fine, no disease, not a carrier.
Believing that Beth was free of the CF gene (and why would we not? There has never been a sick person in her family’s history) we were under the impression that we had a ZERO percent chance of having a sick kid. Now that percentage exploded to ONE in FOUR chance of having a child with Cystic Fibrosis.
And that child was growing inside Beth. And time was running out. For me, at least. I was NOT going to go through this disease again. Was I?????
They tested the baby and sent it off to a lab to await the results. It would take three weeks.
That’s three weeks robbed of excited name-the-baby talk. Three weeks avoiding thinking of what our “family” would be like. Three weeks avoiding conversations with friends who wanted to know what we needed for the new kid. Remember this baby was coming into our lives, all of our lives, family and friends, 11 months after Liz died. But the KNOWLEDGE that it was coming was barely 4 months after her passing. I don’t think it would be hubris to say that people were rooting for the Lulus. Rooting for this baby. In the shadow of death there’s new life, right? Or something like that.
Those three weeks were hell. Conversations between us were stifled as they were sure to bring us to tears, tears shed for an event that we were unsure of.
We played a lot of video games. Rock Band, especially. Go figure, right?
And I had to get out of the house for those three weeks. I would ride my beat up Kawasaki Vulcan to Easton Gym, meet with my trainer and get on the elliptical and just go. I poured my fears into my body (and those who know me know that the results were decidedly NOT visible).
At the end of the second week I was on the center elliptical machine, watching the news, huffing and puffing to the music on my iPod: Nightmare of You’s “I Want To Be Buried in Your Backyard” was playing when my phone rang. It was the genetics lab.
I hit stop on both the machine and the player and answered the phone.
“I had them rush the results because…” The lab counselor said. “…I know what you went through…Your baby is a carrier. She isn’t sick.”
Back to that movie. Shots of the hero leaping off the exercise machine. Tossing all his stuff into a backpack. A motorcycle’s engine revving. Wearing gym shorts and motorcycle boots, he races through LA traffic, laughing and crying, he flips up his helmet visor because it’s steaming from his tears. He gets home. He’s in the house. He talks to his pregnant wife. They both cry. Hands on her pregnant belly. The camera pulls back. We dissolve to Zoe’s birth.
Actually, I just called her from the gym and told her. Then I took a shower. Breathed a sigh of relief. Got on the motorcycle and listened to “The Studded Cinctures” as I rode home.
There’s a post-script to all of this.
Years later we were doing In Vitro to have another child. There were four viable embryos that we would’ve implanted that cycle. The cycle where Zack was conceived.
Because Beth said “Run the full panel”, we sent cells of each embryo to a lab to be tested.
Remember, if we had just listened to me, Zoe would’ve been born and we would never have known that Beth was a carrier.
Two of the four embryos we submitted were robust, having divided the way you hope embryos do.
And they were full blown CF sick.
The other two were weak. We were lucky to pull a cell out of them to submit for testing. There is every chance we would’ve implanted all four. Hell, we might’ve only implanted the “healthy” looking ones.
And Zack would have been born with Cystic Fibrosis.
A Nightmare of something, indeed.