Reflecting on a childhood with a disabled brother is like digging through dusty boxes of childhood memorabilia you just found in your attic. Every item I pull out draws up memories I thought I had forgotten. Inanimate objects spur a sharp release of some emotion-related hormone from the bottom of my stomach, which flows through my veins and out to my limbs, before seemingly dissipating out of my pores. It’s almost like the opposite of drinking hot coffee.
There’s some kind of nostalgic or masochistic pleasure in these emotional flushes. It’s somewhat like a short roller coaster; There’s something addictive about the uncomfortable feeling of close death that isn’t pleasant but is novel and keeps you coming back.
Even though my logical brain knows there’s a to do list with “really important” things to be done today, I can’t be released from the box.
Perhaps a part of my brain unconsciously knows these memories are important to my survival.
Everywhere you go, people look at you funny.
I felt it deeply when I came home from college for a visit. I took JM out for pizza; specifically the Maui-Zaui from Round Table Pizza, his latest obsession. I had learned well and good by now: When it comes to what we’re going to eat, JM makes the decisions. It’s either that, or you block off the rest of your day to deal with the ensuing chaos (which sometimes occurs even when he does get what he wants).
But this visit was uneventful in that regard. JM knew he wanted the Maui-Zaui and that’s exactly what we went to get.
The reminder that we aren’t normal only set in when we left the safety of his group living home and headed out into public.
Why is everyone in this restaurant staring at us?
Oh, yea, my brother looks like an overweight transgender thug from the 90’s.
Thugs from the 90’s
If you’re not familiar with the 90’s thug look from the Inland Empire of Southern California, it’s worth taking a quick aside to give you the proper image. Here are some of the styles characteristic of this look:
- Jean shorts so baggy they might be mistaken as pants
- Long white socks with slippers or fat skate shoes
- An uncomfortably baggy white T or Raiders jersey
- The wallet chain
- Slim, all black sunglasses
If you need more imagery, you can Google “California cholo thug”
The other ingredients
In the Inland Empire (aka IE), someone dressed like a 90’s thug – even well into the 2000’s – wouldn’t turn too many heads. However, when you mix in his top-knot haircut (he was ahead of his time in this regard), soft facial features from not being fully developed, and what you could call “bitch tits” for lack of a better term, you get an abnormal look from “normal” people.
Most folks don’t see people like my brother every day.
In retrospect, I can’t blame these Round Table Pizza goers for being curious. I suppose I would be too if I hadn’t grown up with JM.
Even though my mind knows these people are not trying to make us feel awkward, my body interprets the odd looks as a “you’re not one of us” signal. To be outcast from the community is death in the eyes of the reptile brain. I believe this vestigial reaction is the root of much stress we experience today.
When I go into public with my brother, we get the stares. Even after years and years, the initial shock still occurs but you learn to shake it off quicker and quicker.
Typical family roles are reversed.
It’s not rare for children to be placed in situations where they have to “grow up fast”. Humans must have an innate ability to snap out of childhood play mode and take on parental responsibilities when needed. I suppose it’s either that or die. Evolutionarily those who couldn’t step up when parents were gone would not live to reproduce.
My other brother stepped up to the challenge when my dad was working long hours, my mom was drunk or locked up, and someone had to care for JM + two younger siblings (myself and my sister).
While semi-independent, being responsible for JM was not an easy task on most days.
JM is what was once referred to as “high functioning”. His extremely rare genetic disorder impaired him physically and mentally. The hallmarks of his retardation are partial development, impaired cognition, and an insatiable appetite (hence the obsessions with Maui-Zaui pizza).
Side Note: The cultural norms on what adjectives are socially acceptable have changed and will continue to change, likely at an increasing rate. I’ve selected the best words available to tell my story as accurately as possible.
For the sake of helping you understand the level of competence JM had, the best comparison is the much more common developmental disorder: Down Syndrome. In fact, many of his friends, co-workers, and several girlfriends had Down Syndrome.
The ball game
When I was in college, I was able to secure a pair of handicap seats at one of our football games. JM loved sports. I was excited to share the experience with him.
I picked him up from his home, drove him out to the game, patiently walked with him up to our seats, and we watched the game together. At half time I went to get him some popcorn as he insisted, even though we had stopped at subway before the game.
Now that I’m older and have the benefit of reflection, I have realized what being responsible for someone else really means. Humans can be fragile and we protect our own (our friends, our family). I perceived physical and emotional threats from all directions when I was responsible for JM.
This is the heightened state of awareness parents must live with.
Every day there is an unexpected challenge.
I turned the corner into our cul-de-sac to see an ambulance and fire truck parked out front of our house. JM was sitting on the lawn, calmly, answering questions from one fireman while an EMT was inspecting his right leg.
I didn’t panic. By the age of 8 I was already going to and from school on my own and had become accustomed to unusual activity at the house. I suppose we were the family on the block that generated most of the gossip for everyone else.
In an attempt to light the grill to cook a burger, JM had poured gasoline through the grate and onto the unlit burners. He then lit it with a match. Unfortunately he had spilled some of the gasoline on his leg and that also ignited.
I’m told that after realizing his leg was on fire, he walked over to the hose, turned it on, and sprayed his own leg to extinguish the fire. Then we walked inside, called 911, and walked to the front yard where he sat patiently for paramedics to arrive.
Additional stress is placed on the parents.
Now that I’ve reflected on the divergence from social norms, the heightened awareness of being responsible for another person’s life, and the unexpected stress that can be thrust into your life when you live in an abnormal family, I’m starting to understand…
Some people are brought together by adversity. My parents were drawn apart. While my siblings and I now bond over our childhood traumas, my parents didn’t make it. I can’t say with any level of confidence that their problems arose from the challenges of raising JM plus the other three of us. It might have been my arrival as the 4th and unplanned child that set them over the edge. If it was, neither my dad or mom would ever truthfully tell me.
What have I learned from all this?
What feels like a burden can actually be a blessing.
Memories are an important survival mechanism. How we decide to relate to them determines how useful they will be to us.
I’ve drawn many lessons from the events of my childhood. The biggest and most helpful to me now is having perspective.
It’s a rare event that a week goes by and I don’t encounter a “problem” that causes me stress. It’s always the injection of an unexpected responsibility into my life that throws things out of wack. An urgent work deliverable, an unexpected physical ailment, or an unhealthy dose of cable news will do it.
My world becomes colored by the lens of scarcity, fear, and worry. Everything I’ve built over the years is going to crumble down. My energy is sapped. I lose confidence in my self image.
Then, a day later (sometimes much longer), the skies clear and life is good again.
My main tool for expediting this turnaround: Perspective.
Here’s my current plan:
- Put things into perspective by recalling past events that were much worse
- Remember how I felt then and how I was able to overcome them
- Capture that feeling of overcoming and use it to instill confidence in myself that this challenge is no different than previous challenges and I have the toolset to overcome it
- Then, get to work. That’s all there is that’s left to do. Put one foot in front of the other and let time do the rest.
