Choices

This post is about the beginning and the end.

It's about birthdays, his and mine.

It's about choices we made, and things we didn't get to decide.

1991

When Alan was born, I was anxiously awaiting his arrival. I remember getting woken up early to go to the hospital. Mom and Dad hadn't yet picked a name for the baby. All morning, we waited for things to kick in and get going. It was as if this baby wasn't sure if it wanted to come. In fact, when he did, it was a struggle, having to be induced at nearly 10 pounds, a difficult delivery.

As a 9 year old kid, I was not allowed in the delivery room. I was initially sat down in a seating area down the hall, but I couldn't wait. I went up to the door, and listened to everything until they let me in.

Alan's life didn't start with a soundtrack, at least not music. Like the majority of people who enter the world in a labor and delivery unit, there was the sound of beeping machines, printing rolls of paper, the hustle and bustle of nursing staff, and the OB pronouncing orders -- to my parents to push or pull or hold or breathe, to the nurses to get this or that.

I waited outside that door, and as soon as they let me in, I saw his face, not yet cute like a baby, but the wrinkly red little monkey face cute of a newborn. I knew my life had changed forever.

2000

In the spring, I tried contact lenses. I started to notice increasing problems with the vision in my left eye, which I thought was related to the contacts, but it wouldn't go away. In the summer, I finally saw my ophthalmologist, Dr Vogel. She immediately knew something was wrong, and ordered visual fields and an MRI. At 17, sitting alone at the front desk of Sage Hall working as a desk clerk, I got a call from Dad that I should call Dr Vogel on her home phone and talk to her about the scan.

I had a tumor pushing on my optic chiasm. This was the cause of the visual loss. And I would probably need surgery.

My eighteenth birthday -- it fell right in the middle of the workup leading to surgery. I invited my friends from college who were in town over the summer. Lynne stopped by with a cookie cake pointing out that I still didn't have a driver's license.

For Alan and me, there was music. It seems goofy now, not what I would pick if given another chance. Alan and I would both talk for Kirby, the stuffed doll Mom made for him (twice). I decided he should be able to sing a song, and for whatever reason, chose Absolutely by Nine Days.

(In a high pitched Kirby voice) "This is the story of a girl..."

Preparing for surgery, I remember being afraid -- not for me -- I figured if I died I just wouldn't wake up from surgery and wouldn't know any different. I was afraid for Alan. What if I did die? What would Alan's life be like, losing a brother at the age of 8? I didn't want him to suffer like that.

2013

I had moved back to Iowa City from Chicago to work at the University the year before. Isabelle and I had been dating since September, and we were talking about next steps. The condo I was renting downtown was too expensive for the space you got, and I was considering buying a house. Isabelle had shown me houses she thought I would like all winter when I reluctantly went to an open house for a place close to work. Despite the Scandinavian elderly "charm" imparted by the owners at the time, there was a breathtaking mid-century modern mystique to the place. Immediately, I knew at some level this was the house.

Alan was deciding on where to go back to school. Comparing film programs in Minneapolis, Madison and Iowa City, he chose Iowa City. I guess you could say he chose me. I bought the house, knowing that if I stayed in my condo there would be no room for him. I did this, and agreed to let Alan live with me indefinitely despite my plans with Isabelle to move forward in our relationship. Alan was wary of this, and even promised to find a place of his own eventually, but I told him he could stay as long as he needed. And so, I chose Alan.

The soundtrack -- this was the summer of Lorde.

I thought this was too pop for Alan when I showed it to him, but then I heard him listening to it. A lot.

2014 (part one)

House renovations were nothing short of catastrophic -- hidden expenses, an incompetent contractor, frozen pipes, a leaking roof, tensions all around, a mountain of debt, lawsuits, and Alan living on friends' couches between nights in his squalid dust pit of a basement room in my house. Alan's legal problems started in early June. We had been trying to make sure he would see a mental health professional, and were busy setting things up, when suddenly the OWI happened, changing everything.

As Alan needed more support, Mom moved into my house, and I moved out to make room. In Mom, Alan had the most intense support that anyone could ever have. She was there for him in ways nobody else could be. She would cook for him, keep track of appointments for him, and see him through any trouble. She hunkered down for the long haul, but it was tough losing so much control in the house. Tensions ran high.

Alan must have known what Mom could do for him that I couldn't, but in the end, he still begged Mom to go back to Wisconsin. I guess you could say he chose me again.

Our parents left right before my thirty-second birthday. That weekend, Isabelle and I took Alan to Solon Beef Days. The soundtrack to that weekend was provided by that event, definitely not what we would have chosen.

We stood outside an old stone building that had been converted to event space, waiting for Isabelle, listening to the speakers blare this song, and Alan looked at me incredulously. Was this song for real?

Late that night, in the daze of recovering from the fighting, Alan couldn't find a bike rack, and left my bike unlocked outside of a Walgreen's. It was promptly stolen. Against my advice to let it go, find the serial number at the bike store, and report it to the police, Isabelle and Alan spent hours that night driving and walking around the not-so-nice areas of town with flashlights looking to see if they could find it.

Monday was my birthday, and Isabelle and I invited Alan with us for my birthday dinner. He almost bailed at the last minute, but she convinced him it was important to me. The restaurant we were going to go to was closed, so we ended up eating at the buffet in the casino. Afterwards, Isabelle would play the 2 cent slots and Alan electronic blackjack. It was a quiet birthday, and only Isabelle and Alan made it not feel lonely.

2014 (part two)

That last day started like any other. I woke up that Sunday morning, not knowing if Alan had made his way back to the house or if he had stayed downtown. I prepared for the Alzheimer's walk where I was giving a little talk to kick off the event. Alan and I saw each other in passing as he came home to start working on editing footage for class. The shoot was "shitty" according to him. He complained about the finicky internet. I told him it only seemed to be finicky when he was on it.

After the walk, I drove to Isabelle's. We decided to go to Cedar Rapids to look at a chair she wanted to buy for me. As we were shopping, I got a text from Alan about dinner.

Piecing things together, it would have been in a flurry of activity for him that afternoon. He had called and texted friends, asking if they could be with him. He had snapchatted a picture of himself with a tear drawn on his contorted face complaining about the footage he was editing.

I called him, and we talked about Isabelle and me bringing food to the house, if he could wait an hour for us to drive back down.

I guess we'll never know what he was listening to at the time, but in the very end, there was no soundtrack. His computer wasn't on. The radio wasn't playing. The only sounds would have been the hum of cars on the street down the hill, the chirping of birds, and the rustling of leaves. He would leave the world in that near-silence. Unlike his hesitant entrance, he must have been resolute, ready to go. There were no signs otherwise.

When I opened the door, the first thing I saw was his face. It would take me a while to process, step-wise, what I was seeing, what had happened, and that life had changed again, forever.

Itazurana Kiss

When I started medical school, it was the first time living more than a mile from Alan. This was in the days before everyone was on facebook, so it was hard for me. He gave me a paper cutout of Kirby he had made, and I had a few other things to remember him by. We would talk occasionally (mostly on land lines -- we shared one cell phone.), and would chat on instant messenger.

Every summer, we would try to go as many times as possible to Six Flags Great America. He would come down for long weekends, and I would come up. He met my med school friends, and we would even share CDs of episodes that he or Linda had burned of anime episodes.

If you're not familiar with J-pop and K-pop, you're not missing out too much. But all these shows had  starting and ending credits with songs, oftentimes with broken English lyrics, or with silliness that totally didn't match the content of the show.

"Oh no! Kikyo just fell off a cliff into a raging river!"

[translation: playful/mischievous kiss]

When I started med school, Alan and Linda were the same height (four eleven and three quarters?). He was a little kid. When I graduated, he was still the shortest person in the family, but he had started to shoot up. The first hints of the darkness had set in, but really hadn't established themselves firmly yet. By the time I had reached residency, things were clearly different. We couldn't go to Great America because he couldn't get his sleep schedule straight. He had migraines all the time. He was missing school for them. He never really seemed excited to go.

I would never have guessed that his slide would just keep going down, deeper and deeper into this dysphoric pit. Cue the silly pop music.

So Lonesome

One of the frequent genres on his playlist starting when he lived in Madison was old country. Not all this new pickup truck, dogs, cheap alcohol, women, and country roads crap, but the old stuff. On the bottom of his bookshelf sits a Patsy Cline CD.

Probably the most frequent country artist to show up on the playlist, sitting in the basement in Waunakee, driving around, was Hank Williams.

The deep voice, the sorrowful yodel, the crying steel guitar, and the forlorn lyrics. I can see why this was the country music Alan connected with. Another Williams track:

Johnny Cash also famously covered that one, both in his early career, and right before his death.

From that same late-life album:

There is something so much sadder about Cash's music in those late albums. Alan had some early Cash on his computer, but seemed to tend toward these -- covers that somehow captured something of sadness and loss that surpasses even the originals.

Dreamland

Like many little kids, Alan had some stuffed animals when he was little. The first was a tiny sheep, representing his zodiac sign. Then, there was the old teddy bear I played with when I was little. There were Pokémon for the two of us (mine was Snorlax), but his favorite was Kirby.

\Alan loved the Kirby video games. So, one day, he asked Mom to make him a Kirby. She made a little pink stuffed doll out of rice and felt, and Alan carried it around with him everywhere. It didn't take long for it to get dirty -- especially after boating with a friend -- he was prone to carsickness. Mom remade an identical Kirby doll out of washable fabric and plastic beads.

Alan would talk for Kirby in a high pitched voice. Sometimes I would, too.

Many years later, Pete Bartels would show me the Kirby/Drop it Like it's Hot mix.

I miss that little guy.

Last, First, Harder, Sadder

Alan and I were always sharing videos with each other in person or on Facebook. The last one he showed me was of a parody of Daft Punk. Hit the CC button for English subtitles.

 Of course, this was spoofing Harder, Better, Faster, Stronger.

Alan really liked Daft Punk. On the same drive from Chicago to Madison where I played Fratres to him, he played one of their older works, Around the World for me. He was anxiously awaiting their new album.

When we were driving to Sioux City for Christmas last year, we stopped in Cedar Falls on the way and had Indian food for lunch. We were taking turns driving, and the passenger would play music. Alan was getting sleepy, but all my music was either weird or too calm to keep him up. He told me I had to hear this track, so we played it.

Because that's not weird.

I'm reminiscing about "the last ___ with Alan." It can be hard; would I have done something different if I knew it was the last time? What I'm really dreading is "the first ___ without Alan." All the little things -- the first long drive, the first grocery shopping excursion, the first time passing the place where I picked him up downtown -- those are hard enough. What about the first Thanksgiving? The first December 11 (his birthday)? The first Christmas?

Chihuahua!

When I was in college and Alan was in early grade school, I got Mom a cocktail set for her birthday. She had wanted a good cocktail shaker, so I found some stirrers, strainers, and cocktail music CDs to go along with it.

Alan wanted in on the gift, so I put one of the two CDs in my Discman, and put the headphones on his head. As I laid on his bed, he stood next to it and started to dance and spin in circles. Intermittently he would yell, "Chihuahua!" I had no idea what was going on until I put the headphones on my ears.

He could almost always make me smile, even when he was older and darker. Of course as he got older and darker, he could also make me want to pull out all my hair and punch a wall.

The gift was a hit, except the CDs. Mom really didn't care for mambo.

Wake Me Up

Alan's musical tastes definitely changed over the years. I remember one Christmas when he was in middle school or early high school, he had a bunch of Green Day magazines. Back in late 2004, when I asked him about music he was into, it included a lot of Yellowcard, Green Day and Blink 182.

From the Killers:

Hard to listen to now.

American Idiot was big then.

When things began to spiral out of control this spring, Alan was trapped in a vicious circle, his depression driving his impulsive actions, the consequences of those actions feeding his depression. As best as I can piece together now, he never felt like he had his footing after May. Broken hearts, rash decisions, disappointments, anxieties, uncertainties, jumbled into a living nightmare. It's hard not to think -- if only he could have held on. If only he could have seen things through, things were working themselves out.

When I was 12, I had the worst dream of my life. In it, Alan had died. He was three at the time. Somehow, he would come back to the house every night. From dusk until midnight, he would live with us as if nothing had happened. There was a pervading sadness, an inescapable realization that the only reason he was with us was that he had not yet found contentment on the other side. While taking care of him -- getting him into his red footy pajamas, feeding him, playing with toys, I knew he would not keep coming back forever. Some day, he would find happiness, and he would move on without us. The thought of that happening was heartbreaking -- that we would lose him again. But it was also heartbreaking to know he was not at peace. In my dream, every midnight, he would walk out the front door and into the afterlife, looking back over his shoulder at us. Some toy or shoe or object would be left behind, but by morning, it too would be gone. When I awoke, I sobbed, and now, 20 years later, I still have never had a dream that has haunted me more.

When Alan died, I wondered if that nightmare had come to life. In a strange way of looking at things, maybe his existence living with such profound depression was like the nighttime unlife in the dream, and his death the release from it. Had we lost him twice? Had he found peace?

Any way you look at it, this was my worst nightmare, figuratively, and maybe literally. Did Alan finally wake up from his nightmare, only for us to find ourselves in ours? Every time I open my eyes, I hope for a moment that maybe it was all a dream, and I am finally waking up from it. Every time, the disappointment, the realization that he is gone hits me like a blow to the gut.