Building a Partnership With Supporters: The South by South Test
Only two months before my brain injury, I had joined a few acquaintances from New York on their tour to Austin for the biggest music festival in the world. South by South West (SXSW) is a two week music, film, and interactive festival that happens in mid March in Austin, TX. I have always been amazed by the impressive music aspect of the festival. With 2,500 “official” music performances and countless “unofficial” shows, the entire downtown of the city of Austin essentially becomes a music venue with over 100 venues hosting “official” acts, as well as every business and residence, that wants to, opening their doors and becoming a venue for different bands or performances.
I had been coming to Austin every year during SXSW since 2008 and I planned to go this year, in 2011, as well. I had met a good man named Josh Wright a few months before March, when he came to the bar that I worked in at the time, ordered a Budweiser, and we began talking. At that time he worked at a bar where I used to work called St. Jerome’s on the Lower East Side of Manhattan. He was also a musician, so we had plenty to talk about. It turned out that his band, Control, as well as Josh T. Pearson (look him up), and a few friends were all trekking out to Austin on a mini tour.
Because I had worked as a tour manager as well as having been a touring musician before, I certainly had a love for the road. I asked Josh if they had room for one more, as I cracked a Bud for him. Josh hardly knew me, nor I him or the other travelers, but he told me that I could ride.
When we got to Austin, I hung out with Taylor and a few mutual friends that I had met in previous years. It was then, in March 2011, two months before my brain injury, that I announced “I am moving here! Gimme two years – max!” The way events unfolded after my brain injury and a five month hospitalization, I had changed my residency to Austin within seven months… I joke that I had taken the fast track! My buddy, Brian, told me recently: “I have a confession to make… When you left in March, I prayed that circumstances would bring you here.” While I wanted to be in Austin, I certainly did not intend for it to happen under these circumstances. “So this is all your fault?” I said jokingly. “You could have been more specific, man! Be careful what you wish for!”
It seemed like, in the past 10 months, my mom had walked me through every developmental stage in life that occurs while growing from infancy. It was as if I mirrored my own entire progression growing up all over again mentally… Only in fast forward. She knew me well, as she had experienced every stage while raising me.
In reality I was caught between two worlds. I had already lived 28 years, and had been on my own since I was 18. When I woke from my coma, I was essentially back in “infancy” and entirely helpless. I couldn’t walk, talk, feed or care for myself and it was this strange mixture of having bits and pieces of memories and mental capabilities, yet I was unable to string together or make much sense of what was going on. As I gained more coherency, I entered the “terrible twos” where I was rebellious, thought everyone was holding me back, lying to me, that I was being abducted, and then throwing a tantrum and ripping out every IV, monitor, and even my catheter. It was difficult to reconcile being a helpless, dependent grown man.
When I moved to Austin I thought that all I needed was an apartment and a car and everything would just go back to normal. I didn’t know what I didn’t know. My mom described it as having “columns” of cognitive thinking that were intact, but that did not interconnect or integrate between one column and another. The corpus callosum acts as a networking switchboard of the brain, and mine had been severely damaged. I could have an intellectual conversation about different things, but I couldn’t grasp the whole picture. It was like all my knowledge, experience, and skills were encased in separate compartments, but they just weren’t able to communicate with one another to see the picture as a whole. Instead, I only had a bunch of puzzle pieces. I had to go back to building blocks and arrange the pieces that had been dismantled and I wanted to skip all of that and move on.
As SXSW approached, my mom thought that my personality started changing. It was like this was my big chance to make a break and act as though none of this had happened. I had already hit a defiant stage where I was getting “too big for my britches” where I had an over-confidence and the pompous demeanor of a young brat. And now that arrogant delusion had evolved into a young teenage mentality. I resented that I was dependent on, and had to deal with, my dumb mom. I acted as if “I don’t need anyone! I just want to be with my friends!”
My very good friend, Lyndsay, who was by my side through a lot of my darkest days in New York, came out to spend time with me during this festival and we were going to have fun!…..Period! It had been quite a rough stretch for both of us, and it was high time for us to enjoy ourselves while I reclaimed some independence. I felt like I had gotten so much better from when she last saw me in October, and I wanted to show off how much better I had gotten. I certainly had in comparison, but I had, and still have, so much further to go!
I had never gotten a pass for this event, and Lyndsay and I didn’t get one this year either because there are so many great unofficial shows and I had always had a good time without one. I walked and talked very slowly, but I would not stay home for an event that I had traveled thousands of miles for in the past. My presumptuous fantasy was that I was competent enough, which gave me just enough false confidence to go out with friends for this event.
My mom’s closest friend in Austin, Kelly, worked at a very nice hotel near my mom’s house, about a 30 minute drive from downtown. Kelly had gifted me and Lyndsay a room for a few days while Lyndsay was in town, but we did not have a car. Lyndsay was a New Yorker, and, like many New Yorkers, didn’t drive… New Yorkers don’t need to drive…
So Lyndsay and I would get a ride into town and then get picked up afterwards, just like I would when I was a kid. We both felt like we’d been transported to an earlier stage in life. My mom would drive us into town in the late afternoon and then pick us up at 3am in the bumper- to- bumper traffic due to this festival’s addition of 100,000 more people to the downtown area. She did this for four days and nights, all while trying to deal with the other thousands of things she was responsible for in life.
My mom felt that the more I got “wings and opportunity” from the grace of others, the more my attitude seemed to reflect a completely privileged and ungrateful teenager. This is an example of how I compartmentalized things. And, after my mother had saved my life, to feel that her son had this selfish attitude while she bent over backwards to allow him and his friend to have a good time completely enraged her.
One morning Lyndsay and I wanted to go see Edward Sharpe and the Magnetic Zeros, but it was not going to work into my mom’s schedule. I acted entitled by saying “Really, mom? Great!?” Like she had dropped the ball on what I deserved. I admit that my demeanor reflected a sense of entitlement in which I showed little appreciation for anything that she had done or been doing, but rather, that I was indignant that she couldn’t wave a magic wand and make every little wish that I had come true. She couldn’t believe that her son was acting this way after everything that she had done and was now doing for him. She said something very mean to me, and I interpreted it to be even meaner. She finally had enough and let me have it. She told me that when she received the phone call about my accident and immediately responded by being at my side less than 9 hours after my fall, that I was nothing but “splat on the ground. She had just devoted 10 months and every resource she could scrape together to give me a chance to reclaim my life. She said “From where I sit and what I know, I see three possible paths for you. You can either
1. Figure out how you are going to live here as a contributing, respectful member of this household, and continue to pursue all the rehab therapies I have set up for you;
2. You could go live with your father who I am sure will just throw you some car keys and let you take your chances.
3: You can go back to NY and finish the job of destroying yourself.”
These were the meanest words that I had heard come out of my mother’s mouth since I was a teenager. Probably because I had pushed her to say nasty things then too. I felt like I could not live with this person who had just said the meanest thing that I had heard in a long time to me. I stood with my jaw dropped as my brain tried to piece together what she said and I twisted it into something worse. I remember interpreting her words as telling me that I was worthless even before my brain injury and that I should probably kill myself. That is NOT what she said though. She was saying that I was nearly dead when she came to my rescue, and that is true. She had walked me all the way to this point and I think that she wanted some trust and respect for her judgement, but I was blind to it.
Lyndsay and I called our good friend, James, who moved from New York to Austin about a year ago and asked if he could pick us up and if we could stay with him for a few nights. He gladly let us stay, and the next day, he and a friend of his came to pick us up at my mom’s house. Lyndsay brought all of the belongings that she had brought to Austin to James’ house with the intention of staying with James until she left. I too had packed what I needed for a few days. Like a teenager running away, I thought all that I needed were my friends and a car. I thought that I was a victim of my mom’s cruelty. Nothing could be further from actuality.
When we arrived at James’ place, he offered for me to stay with him as long as I would like, and that we could figure out ways to get me to my necessary therapies. He is a real friend. I am very lucky to have him.
It was an exciting idea for me. It was rebellious. It was a way to say “see, I DON’T need you, mom!” Sound familiar? If you are a parent who has or has had a rebellious teenager, it probably does.
I called my dad and told him my distorted perspective of what my mother had said to me. I thought that it would be better to be with my father in Colorado. My father would probably get me driving ASAP, but I wouldn’t receive the same therapies that I was getting in Austin. Even though there are good therapies in Colorado as well, I also would not be where I wanted to be ultimately. My father brought up all of these points, but also told me that “if it really is better for you to leave, then I will come get you.”
I appreciate that my dad told me to try to work it out with my mom. He did so, not because he didn’t want to deal with me, but because he wanted what was truly best for me. I love my mom, but I was so mad and in such a rebellious teenage mindset. The home that had been absolutely incredible for me to regain some abilities was the last thing that I should want to throw away, but I didn’t see it. When I stayed with James’, I felt as if I was in a place that accepted me. And I was, but I was accepted at my mother’s house too. I just needed to show some respect, and I wasn’t. I was being snotty and entitled.
To my mother, my mentality during this time was so reminiscent of my rebellious teenage years growing up. And, of course, a parent of a teenager is in a hard place. That teenager is in a hard place too. It is a situation similar to what I described in an earlier post (A Rock and a Hard Place). Dependence is possibly the hardest terrain to navigate with a loved one. But even more difficult is when the one who is dependent is also being ungrateful.
I stayed with James for the next few nights and reluctantly made plans with my mom to take me to see my neurologist, Dr. Culleton. When she picked me up for this appointment, we talked for a long time on the way, but nothing was resolved. When I went in to see Dr. Culleton, I told him that I was going to move to Boulder, Colorado, and asked him if he could refer me to a good doctor out there. He told me that he knew of a few, but also told me how great my mom had been and was being and that he hoped that my mother and I could work it out. He also told us about “mindstorms”, or chemical imbalances within the brain, during healing, which were pretty common with a DAI, especially when there was a lot of excitement and stimulation happening. These chemical imbalances can cause irrational thinking and “acting out.”
After the appointment, my mom and I had a real heart to heart. We talked about how we are a team. We were partners navigating this together and had run into some difficult terrain on top of what was already very hard to navigate. We talked about how painful a failed partnership is, and we both did not want that. I love my mom so much it hurts, and walking away with bitter feelings would have been very hard for both of us.
I had not cried since my brain injury, but both of us teared up when I told her how much I loved her and that, because we had traveled this far, we are a good team. We somehow overcame this difficult obstacle and were able to continue on our journey of navigating through my brain injury. We passed the test. I promised to be more respectful and I hoped that we could continue down this road together. I did not, however, tell her that I was sorry for acting the way I had until recently, but I am. I love you, mom. I am sorry.