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Today marks the 6 month anniversary of this newsletter. In that time I have written 116 daily updates, and 16 weekly editions of 5 Things. It has been wonderful sharing all this with you. Thank you ALL for your continued support.
And, believe it or not, I actually wrote some stuff before this. I know, I know. I can barely believe it myself. I have decided to do something a little different for this week’s 5 Things. I am sharing 5 older pieces of writing that were originally shared in various places. Some on my blog, some on a much earlier iteration of this newsletter, and some I shared in church.
Each of these writings is important to me for some reason or another. Some capture a time and place, some capture a feeling that feels important to me still. And I want to give them all a new lease on life by sharing them here.
Next week there will be more new stuff (a special Halloween 5 Things), but this week is about reflecting on the time I have gotten to spend with each of you. Thanks for reading. And I hope you enjoy this week’s 5 Golden Oldies.
Golden Oldie #1
Why music matters.
I wrote this in 2009. NPR was running a series at that time called “Why Music Matters” where writers and artists and celebrities shared their favorite songs or albums and talked about what made them special. I decided to take a crack at describing the most important album of my adult life. At the time I wrote this, the women who created the sound were abstractions. Literally voices in my head. Fast forward a few years and I have gotten to know all of them, and I am lucky enough to consider them friends. I mean. How often do you get a chance to meet the people who kept you sane in war? Who in many ways kept you alive? And then when you DO meet them, how often do those people then turn out to be just as cool, just as kind, and just as wonderful as you hoped? Even more so? It’s a rare thing.
Oh, and just for fun I pulled up Sweetwater and listened to the whole thing from beginning to end last week, just like I did in Iraq. It has been 15 years. It still fucking gets me like it’s the first time.
During Christmas 2004 I gave a little extra care to my shopping. I was due to leave for a year long deployment to Iraq just a few days after the new year and I wanted to
make sure that I had everything that I needed, plus everything I could possibly pack that might make the time away from home pass just a little faster.
One of the stops I made was the Best Buy to look for music. It was there I bought the CD Sweetwater by the band Tres Chicas.
I had developed a passion for Alt-Country after college. The pump was primed during my formative years in Texas where I was raised on Waylon and Willie and developed a
lasting familiarity with both kinds of music - country and western. During college I had strayed far afield from this upbringing choosing to focus on the indie of the moment. A
few years older and with a few more miles under my belt I reconnected with my country music in a new way. I heard Alejandro Escovedo and realized that music could be country and also indie and good.
There was much rejoicing.
Fast forward a decade. I am ready to go to Iraq. Just need to load up my new iPod. It was solid white and the size of a brick, but would hold a staggering amount of music.
It turns out I would only need it to hold 10 songs.
I had read a review of Sweetwater by Silas House in No Depression #52 (I was a subscriber and ardent reader). It had also made many year end “best of” lists. I was
additionally intrigued because I was stationed at Fort Bragg and the Chicas had formed in and around Raleigh. I considered myself a part of that scene. Not sure why. I can’t sing. Or play. Hell, I hadn’t even been to a show. I was always deployed.
But I got the CD, loaded it onto the iPod and left for Iraq.
The first time I listened to the album was on the flight to Iraq. I was mesmerized by the harmonies of three clearly distinct voices which seemed to have been made to go together. The lilting beauty of Caitlin’s violin, Lynn’s soaring vocals and Tonya’s stirring soulfulness made an instant connection.
It was love at first listen.
The next day I met with my team and got a briefing about what the next few months would bring. After the meeting I listened to Sweetwater.
The first time we left the gates on a mission, I came back and listened to Sweetwater.
When we hit our first IED, I came back and listened to Sweetwater.
The album became my touchstone, my sanity. It was my connection to the “real” world that existed beyond the sand, the sorrow, and the separation.
Tres Chicas pulled me out of the doldrums by singing about the girl whose love was just as deep as my pocket. They made me want to have a threesome with desire.
They kept me human in the most dire of circumstances, and they made me remember that there was something beyond my circumstance that was meaningful, and special, and worth being present for.
And when I heard them plead to “please remember me, I am not the enemy...” I felt like the whole album had been written just for me.
I am no longer in the Army. I have heard lots of other albums since 2005, some good, some bad, some special. But I will never have another musical experience as intimately connected to who I was, and who I would become as Tres Chicas’ Sweetwater.
And that is why music matters to me.
Me and the Chicas in Raleigh.
Golden Oldie #2
Focusing on a tire.
This short piece was written just last year, in the beforetimes, when Justin still went to preschool and where having a large group of unmasked kids in a small space was seen as a good thing. Sigh. I hope that is something that can safely return soon. It’s amazing what you can learn from kids.
This week, Barb and I got to hang out at Justin’s preschool for a while. It was a special day because the school’s music teacher (who is also a volunteer firefighter and EMT - yeah, I know) brought a WHOLE fire truck to the school to show the kids and to talk about fire safety.
At one point, there was a small commotion. Kids started to rush to gather around…. a tire.
They were there next to a tanker truck that is capable of carrying and pumping 1,000 gallons of water in less than a minute. It had its own on board generator, a wide variety of life saving gear and multiple ladders. And sirens and flashing lights and all sorts of very cool fire truck things.
It also had a mirrored axle cap on the tire that reflected the children’s faces. Because it was curved, it rendered the reflections a little bit altered. It was their face, but it looked different. Curved, longer, not how it looks in a flat mirror. And the kids were mesmerized. It took a minute or so to get them to focus their attention back on the fire truck.
It made me think about all the times that I have been distracted from the amazing things around me because I instead chose to focus on a distorted image of myself. I thought about how much time I have spent looking at tires.
I think we all do this to a greater or lesser extent. We focus on what others think of us. We focus on Facebook or relationships that drain our energy. We get narrowly focused on things that give us a distorted picture of ourselves and a limited perspective on the wonder that surrounds us.
Golden Oldie #3
Laity Sunday 2014
Every year our church has a Sunday run by lay people. It is always one of my favorite Sundays. It is always a great reminder of how unique and talented our community is. I have been lucky enough to to get to participate a few times over the years. This is what I shared in 2014, and while some of the references are dated, I love the spirit of this piece. If anything, it is even more relevant now that Justin is part of the craziness that is our family.
If you want to be a member of the Hall family, you will have to prepare yourself for some social awkwardness.
First, as this morning shows, mom and dad won't shut up. You put up a microphone and we'll walk up to it and start talking. If something needs to be done, we'll probably do it. And if someone asks for volunteers, we always sign up. That's exactly how I ended up in the Army.
Why do we do that? I’m not sure. The positive spin is that we want to serve and lead others. It could also be that we have a medical condition. But it definitely means that we stick out.
Our family also sticks out because of the sheer number of us. Barbara and I have 4 kids. That is 2.1 more than the US average and about 3.9 more than sanity required. At one point in the early 2000s three of our kids were under age 5. And we still tried to go out in public. With that many kids you don't exactly blend in.
One of those many kids is Matthew. You may remember him from the various color shades and configurations of hair that he has worn. You may also recall that he loves to usher and give Jill quite a hard time during confirmation.
One of those kids is Alex. It used to be Ally, but she changed it because she is about to go to college. She is one of the youth who will help lead the children’s service this morning. She, much like her parents, seems incapable of not helping.
One of those kids is Elizabeth. She is the shy one who is probably going to be really mad that I mentioned her name this morning.
One of those children is our son William, whom many of you have met and whose particular public manifestations of autism ensured that we were always front and center in people's attention. When we went to McDonald's, William would help himself to people's fries rather than wait for his. When we would go to the grocery store he would stop and arrange containers on the shelf. And there was always the threat that he would become overburdened and lash out. We were stared at, laughed at, and even accosted and told we were bad parents. William's differences made us all different.
See, when our family comes into the room, you will know. One of our oldest friends once said that our family isn't a family, it's an event.
One of the things that we love about United Church is that it is a place that, from the first, let us be us. That welcomed, even encouraged our differences. That wrapped us in love, support and encouragement.
Here our unique difference was accepted, but even more importantly, it was made part of the community.
Individual uniqueness became part of a collective identity.
On the day of Pentecost, our text tells us, the Holy Spirit came like the “rush of a violent wind.” The disciples began speaking in languages they didn’t know, but spoke in a way that native speakers understood. The whole scene was shocking to onlookers, and they began to speak amongst themselves about what they were seeing. Eventually Peter had to stand up and reassure the crowd that the disciples weren’t drunk.
The disciples, like our family, had become an event.
Pentecost is the radical undoing of the Tower of Babel. Instead of everyone coming together in a common language and moving toward God, God comes to people where they are, and he gives them the language to understand each other.
Pentecost is about God coming to us and connecting us to one another. This is the essence of our faith. We are not gifted with the power of the Holy Spirit because God wants to make us into better people, or give us instructions for how to live a better life. He gives us the power of the Holy Spirit so that we will connect openly, honestly and genuinely to one another and to creation.
In the words of one of my favorite writers, Brennan Manning, we are to become “professional lovers, men and women who would surrender to the mystery of the fire of the Spirit that burns within, who would live in ever greater fidelity to the omnipresent Word of God, who would enter into the center of it all, the very heart and mystery of Christ, into the center of the flame that consumes, purifies, and sets everything aglow with peace, joy, boldness, and extravagant, furious love.”
So to be in my family, you are gonna have to deal with some social awkwardness. You are going to have to connect with those around you, and joyfully participate in the suffering of the universe. You will have to set everything you see aglow with peace, joy and furious love.
Are you ready?
This wasn’t taken on Laity Sunday. But it is what I look like when I talk in church. Or at least was what I looked like when this kind of thing was still possible.
Golden Oldie #4
This is one of my favorite things that I have written. It was originally written for a local autism blog, and I wrote it a few years after we made the decision to admit William to the Partners in Autism Treatment and Habilitation (PATH) program at the Murdoch Developmental Center in Butner, North Carolina. That is still the hardest decision we as a family have ever had to make. This is a longer read, but it is important. You can’t really understand our family - you can’t understand me - without knowing this story. And knowing William and all that comes with his very special presence in the life of our family.
3 years and 21 days ago, I made a decision that I swore I would never make. I dropped my firstborn son off at a state run program in a mental hospital, admitting to him and to the world that our family was no longer the best place for him, and that someone else was better equipped to meet his needs than my wife and I.
I institutionalized my son.
William was always special. He was born on New Year’s Eve 1998, our second child, our first boy. He had big blue eyes and blonde hair. He was a big, round ball of chubby cuteness.
By the time he was 9 months old, he hadn’t started babbling yet. He loved being in his swing. A lot. Like all the time. Hours at a time. The motor burned out. He loved his pacifier and would not sleep without it.
By the time he had his one year checkup, Barbara was concerned enough about his development to ask the pediatrician about it. It’s all good, the doc said. Boys are different than girls. Rates of development differ. Nothing to worry about. Barbara said, yep. I know all that. But something isn’t right.
She got up and left the office. A few days later she was at another appointment and saw a flyer on the wall. The poster was for Project Child Find, which was offering a free screening for kids like William. Kids who were different.
William would get a screening, and by the time he was 18 months old he had attended his first therapy sessions for what was being described as sensory integration and pervasive developmental disorder. Disorder. It hurt to hear. The first time we would hear that William wasn’t just different, he was abnormal. Wrong.
At least that is how I heard it.
As he got older, there were more therapy sessions, and groups, and talks with doctors. When he was 2½, he was in a group with 4 other kids. The group met with their therapist in a special room at Womack Army Medical Center on base (we lived on Fort Bragg).
The other kids in the group were like William. They didn’t make eye contact. They flopped and flapped. They became agitated if one of their toys was taken. We began talking to the other parents who joined us in observing the group behind the two way mirror. It was a conversation that special needs parents will recognize. You see, not unlike elementary kids comparing Pokemon or middle schools boys talking football teams or high school kids talking about whatever the hell it is they talk about, we compare diagnoses.
“Is that your son?”
“Yep, red shirt. Your daughter?”
“Yes. Pink boots. What’s your son’s diagnosis?”
“PDD and sensory integration. Yours?”
We asked another parent. Then another. Then another. Autism. ASD. Autism.
Of course, that was not something we had to worry about. The therapist had told us that William didn’t have autism. He was just in this group because he had a “commonality of challenges.” He wasn’t autistic. I mean, I had seen Rainman. William couldn’t or wouldn’t talk, much less count or do amazing math.
Daphne, the group leader, had clearly seen parental denial before. She was very patient. She had a suggestion. I have something I would like for you to fill out she said. It is called CARS — the childhood autism rating scale. Fill it out, and we’ll talk about it.
When we got home, we filled out the form. You could almost hear the ominous movie music playing in the background as we marked 4 after 3 after 4. We looked at one another, coming to the same conclusion at the same time.
William’s got autism.
And we have a lot to learn.
Fast forward a few years. We are world class autism experts. We became ace advocates. William was the first pre-K student with special needs at Fort Bragg to get a full day program WITH a one-on-one aide written into his IFSP. By school age he moved into a self-contained classroom and had amazing teachers and therapists.
But our life was ruled by autism.
William didn’t sleep. He didn’t talk. He wouldn’t potty train. When we went to McDonald’s as a family we always had to take extra money, because it was inevitable that William would walk up to someone’s table and take their french fries. If it was a sit-down restaurant he would start fussing and whining as soon as we sat down. He didn’t understand why the food wasn’t there.
Eventually we stopped going out.
There were so many things that we couldn’t do. Go to church together. Sit and watch our younger son’s soccer game together. Attend birthday parties.
All of our plans were subject to William’s mood, whether or not staff was available and whether we could afford to cover them.
All of this was complicated by something else.
Life with William was hard. Lots of time, lots of hospitals and therapists. Not enough time for each other or our other kids. Constant worry that we weren’t doing enough to help William deal with his challenges, weren’t giving him enough.
But we had love, and we always found ways to laugh. Many days our life was good, and when it was we would smile. Because although life was challenging it was what we knew. And when William smiles it can melt your heart and light the room.
William got really worked up when it was time for me to go. When he saw the bags come out for another one of dad’s deployments the tantrums would start. You could see the anger and frustration build. I would pack and worry and wonder what would happen when I was gone.
I would head off to combat and Barbara and the other kids would prepare for their own kind of war.
We would purposely leave room on William’s medications so that when I deployed we could increase his meds. We would try to make sure that we had staff lined up, that teachers were told when I would be leaving.We would talk to the kids, and prepare them.
We tried to explain, and tried even harder to understand, that William was already dealing with things that made him feel overwhelmed. He was bombarded with lights and noises and textures that made just functioning day-to-day a challenge. His brain couldn’t make words to express what he felt on the inside and his feelings could only be expressed physically.
When we were all together he could sense that the world was difficult but somehow right, and that he was loved and supported.
But we weren’t all together. Because I had to leave.
Afghanistan. Iraq. Uzbekistan. South Korea. Even 6 months in New Jersey. “Garden State” my ass.
I was gone all the time. From 9-11 until I left the military in 2007 I was home for 20 months.
While I was gone playing Army games, at home all hell would break loose. William would be easily angered, and physically lash out at whomever was nearby. He bit and banged his head and destroyed furniture. We still hesitate to buy nice things.
In 2007, it was time to leave again. I was part of a team that would be training the Iraqi army. I had to attend 7 months of training at Fort Riley, Kansas before I deployed for 18 months. Two years away from home.
It started like it always did. The bags. The fussing. The fear.
But it wouldn’t end that way.
I had just arrived back at the barracks at Fort Riley from a day of training. My cell phone buzzed.
It was Barbara, calling from home.
“Hey babe. What’s up?”
“Same old. I just wanted to give you a heads up.”
“I made a video.”
“Of what? or do I want to know?” (My attempt at cuteness. I am charming.)
“Ha ha.” (This isn’t a laugh. She actually said ha ha. She is immune to my charm). “It was of Willie. Having a meltdown.”
“Okay. What did you do that for?”
“To get people’s attention.” (Her statement felt heavy. Like she really, really meant it this time.)
“What people Barb?”
“I sent it to the Governor, all of our representatives, the Senate Armed Services Committee and your chain of command from battalion all the way up to theater commander.”
“You did what now?”
Before she could answer my phone buzzed again. My team leader. I clicked over. Meet me at the battalion commander’s office. He said we have to talk now. Do you have any idea what this is about? I might, I said. Well meet me there now. I clicked back over. I gotta go. Shit just got real.
We walked into the battalion commander’s office. We had been there lots of times, mostly just hanging out. I walked in and made a beeline for his couch, my favorite spot.
“Don’t get comfortable. We are going to see General Ham.” (Major General Ham was Division Commander and would, in a few years time, be in charge of all American ground forces in Afghanistan.)
“Okay. That’s different.”
We loaded into his Humvee and headed to Division headquarters. We went to General Ham’s office and were escorted into his conference room by his aide. General Ham was seated at his table with his assistant Division Commander
“SFC Hall, welcome. Come on in. Have a seat. Do you know why you are here?”
“I have an idea, but I am not completely sure sir.”
“I got a package in the mail today. It was from your wife. You know what was in it?”
“That’s right. A really powerful video. Very moving. Have you seen it?”
“No sir. I only heard of its’ existence about 20 minutes ago.”
“I see. Could we cue up that video please?”
His aide dimmed the lights and pulled down the video screen. The computer flickered and the video came up:
As the video came to an end I was close to tears.
There he was. My baby boy. Struggling to make sense of a life impacted by a differently wired brain and not understanding where I was, or why I was there. I wasn’t even sure that I knew anymore.
And I heard him in my mind. Daddddaaaaddddddaaaa.
“What do you think?”
The question jarred me back to reality.
“I am not sure I understand your question, sir.” I had a lot of experience dealing with senior officers. I was not used to personal questions from them. “What exactly are you asking me?”
“What do you think about what you saw?”
“I think that it was hard to watch, and I wish I was at home sir.”
“You have a stellar record. What do you want to do?”
“Again, sir, I am not sure I understand the question.” What the hell? What is this crazy old coot getting at? What does he mean what do I want? No one has ever asked me that in 12 years of active duty. “What exactly do you mean? Sir?”
“What would you say if I told you that I could get you out of the Army in a week?”
“I would say yes. Please.”
“That is all I needed to hear SFC Hall.”
It took a little longer than a week. It took three. And a trip back to Fort Bragg.
But 19 days later I went from Fort Riley, Kansas preparing to go back to war for the third time to a rental house on the north side of Fayetteville, learning how to be a stay-at-home dad.
By mid-2010 we were nearing the end of our rope. We had spent over a decade with William, meeting every need and foregoing every small sanity taken for granted by most parents.
Sleep. Family outings. Furniture that didn’t need steel reinforcement.
We had been to IEP meetings and case management meetings. We had discussed Williams strengths (he can be a very loving child, a charmer with a great smile, and he is very smart!) and his weaknesses (when he gets upset he will beat your ass like you stole something and ran from the cops).
We were free from the constant worry and stress of life in the military.
But William was never, IS never, free from the prison that autism has created in his mind.
We heard about a program. Partners in Autism Treatment and Habilitation at Murdoch Developmental Center in Butner, NC… PATH. A state run program that was specifically designed to give kids like William the support, structure and care that they needed to thrive.
A state run mental hospital. An institution.
No matter how bad things got with William, I always swore we would never institutionalize him. No way some government agency knew better than we did. No way I would warehouse my kid in some foundling home out of Dickens. We would care for our boy. We were his parents, for God’s sake! Who knew better than us how to care for our boy? How to love him?
Of course, I had on some Ray-Ban quality rose colored glasses. I hadn’t been at home when William was at his worst. I hadn’t been bit, been scratched, been hit with balled up fists of rage wielded by a boy who was already 5-2 and 140 at 11 years old and got bigger every day. It was easy for me to say no institution was necessary.
Barb’s bruises sad something different.
We learned more about PATH. We talked to other parents that had made this impossible decision. We filled out the application, at first expecting that William would do a 90 day respite placement. When we were told he was a good candidate for the regular, two year program we amended our application.
We needed help.
It took a few months and a lot of paperwork, but William was admitted to PATH in October 2010. His “move-in” day was 1 November 2010.
We drove to Butner and explained to William and our other 3 children what was happening. William was going to autism college, we told them. A special place that existed to meet his needs and care for him 24 hours a day, 7 days a week. In ways that we couldn’t. A full time nurse and behaviorist and dietitian. School in house. On site case manager. Therapists interacting all day, every day. Trained people always on call, always there.
Always rested. Always prepared. Always energetic.
William’s younger brother wasn’t convinced.
“Autism college? Sounds like autism jail.”
But we persisted. Despite the doubts of the neurotypical children. Despite our own misgivings.
Maybe it was desperation that drove our decision. Maybe it was fatigue. But when we had our first visit with William 6 weeks later (they had asked that we give him time to adjust), all our fears evaporated.
William was smiling. Happy. He looked healthy, rested. He had lost weight, and gotten taller. The combined effect was that our baby had grown into a young man over night. He even had a little peach fuzz.
After a year at PATH, 4 psychotropic medications had been reduced to one. Clonidine, the first medicine that William had gone on and the only way we had to know he would sleep had been the first medicine eliminated. He went to sleep on his own every night by 9pm, and slept until 6am, when his daily routine started.
He was paying attention to tasks in school. He had reduced his angry outbursts. He hadn’t bitten anyone since the day he arrived.
His life was scheduled in 15 minute increments. He knew when dinner was, when school was, when therapy was. He was expected to set the table, fold his clothes, and wash his own body.
Within a year he was potty trained.
As William grew, so did we. We had dinners out. Played family games. Had nights where we sat downstairs together and watched “The Amazing Race” and made s’mores in the fireplace and talked and laughed and were a family. We weren’t constantly listening for the back door to hear if William had snuck out. We weren’t waiting for him to get mad or wake up or need attention.
We just were.
He was happy. We were learning. We all adjusted.
Everything changed. Everything.
William lives in a group home in Statesville, NC now. It is a beautiful house in a quiet neighborhood with a big backyard, a trampoline, a basketball hoop and an industrial strength swing set. He has his own room with a flat screen TV (thanks Nana!), DVD player and cable.
His day is still broken into 15 minute increments. He lives with 5 other young men, including one that was at PATH when he was. He misses us, I know, but he loves his friends and loves his house. If he had his way, we would live at his new home with him. All of the structure, all of the security, the world revolving around his needs. But with his family as a nice distraction.
We see him every couple of weeks, and every month or so he comes home, back to Chapel Hill, for an overnight visit. He gets to eat cereal, drink soda, stay up late and generally break all of the rules he has to follow at his group home. We get to let him.
He is happy to be at home. For about 24 hours. Then he wants to go back to Statesville. He brings us his backpack and leads us to the door. I need the structure he seems to say. I need a life that meets MY needs. Take me home.
We pack up and we take him home.
When we leave there is silence in the car. We are all sad. Our 6 piece band is missing its most unique and different piece. The part that makes us, us.
But we know that William is happy. And that we have done what is best for him and for our family.
The tears are dry by Greensboro. And by Burlington the jokes are flying and the putdowns are stinging and the parents are begging people to stop cussing “just a little. I mean damn.”
We are a family in two places. Six people. One heart.
And no matter what happens, or where he is, we know that we will always do whatever it takes to make Willie smile.
This picture was taken on one of our first visits to Murdoch. He now lives in Catawba County and is a fully grown soon to be 22 year old man. Time flies.
Golden Oldie #5
This is a reflection I wrote in honor of Good Friday a few years ago. While I don’t often get explicitly religious in this newsletter (mainly because I am no longer explicitly religious), I think that this short piece accurately captures where we are in the world, and what the next few weeks and months will bring. It felt like a good way to end this week of reflections.
It's Good Friday and the world feels broken.
Kids are being gunned down in school, and people with money and power don't care. Black lives are discarded and communities watch in confused terror as murderers escape punishment. War, and rumors of war, swirl around us.
It's Good Friday and someone in our community is alone. Someone is hurting. There are kids with cancer and the planet is burning and we are swimming in disinformation so deep that it seems impossible to tell what the truth is.
It's Good Friday and the world is broken.
It is broken and imperfect and irregular and there is pain and discontent and confusion and we hurt each other - sometimes on purpose and sometimes by mistake.
It is Good Friday. And like us, Jesus lived in a broken world. He took on entrenched power and spoke for justice. And they broke him and hung him from a cross. Because we are broken.
It's Good Friday and the world is broken.
And in the cracks, light shines through.
In our community, we find our humanity. In our fear, we find our resilience. In our weakness, we learn the power of asking for help. It is our brokenness that is the source of our strength. It is in acceptance that we find our path. It is in humility we find peace.
It is Good Friday and the world is broken.
May it ever be so.
As always, thank you for reading. Be well friends. If you are not a yet a subscriber and would like to get the 5 things (and a whole lot of other good stuff) during the week, I can’t encourage you enough to become a subscriber.
See you all soon. Keep pounding the rock.