This brother of mine.
I’m not sure that anyone can make me feel as exhausted as he can.
I say that in love.
He comes home on the weekends, generally just for a a day. Often he has his own agenda. There is no sit down and relax with him, no enjoying a movie. He used to watch movies, but for the last ten years or so he’s only able to watch a few minutes at a time. He may sit for a bit, rocking in his chair then get up and wander out. My favorite is when he comes back in and stands in front of the television talking about Guitar Center or The Rock and Roll Hall of Fame.
It’s not really my favorite. I’m being sarcastic.
Erik’s mind never stops. There must be a constant flood of chatter up there.
Putting him to work, though, at least gives him somewhere for the energy to go. He will relax then. Last week we started putting in a raised bed. He had driven me bonkers with his talking and I wasn’t happy when he chose to follow me outside where I wanted to work. Alone.
That’s the thing with someone like Erik. You never know what kind of day you’re going to have. For me, even when I’m in a sour mood, I can correct it while I’m around people. Erik, though, doesn’t subscribe to any social constructs. He could care less how it makes others feel. Well, actually it’s not that he doesn’t care about other’s feelings. He is simply unable to see how his behavior affects them in the moment, and he’s incapable of stopping the behavior.
Sometimes we can pay him $2 to get it under control.
You get him working, though, and it’s amazing how coherent and calm he becomes. He’s always been good with his hands, able to put things together (or take them apart) quicker than I would think possible. Getting his body busy gives somewhere for his anxious energy to go.
That day we worked in the soon-to-be garden I remembered how much I liked doing things with him. When I was pregnant with my first child, Kiley, Erik came over and helped me put together all of the baby furniture. We were just going to do the bassinet and changing table. We both were so excited, though, that we put every single piece together.
Erik is such a strange juxtaposition of turmoil and calm.
When I was young, in my early teens, he was happy to sit in my room. He’d watch whatever I was doing while he laid on the floor. One leg was crossed over the other bouncing on his own knee, hands behind his head while he stared at the ceiling. His presence never bothered me. In fact, his presence was comforting.
I can’t remember when his constant chatter picked up. It was probably around the same time I had kids, so I got good at ignoring background noise.Whenever it started it’s a constant now. When people meet him I can see them waiting for the pause, for their turn. For me it’s just like white noise in the background – occasionally I tune in. Erik is satisfied with me nodding my head, I guess. I learned the hard way to never agree to anything without clarifying what he had asked.
We will probably never break his habit of turning the radio up loud while continuing to talk incessantly.
“I can’t listen to you and the radio,” I’ll tell him.
He’ll turn radio up and look out the window.
And continue to talk.
I wonder so much about him. What does it feel like to be him? Does he feel connected to us, or separate? He’s like a child in some ways but very adult in others. He can be quite capable. He can mow the yard, weed eat, add windshield wiper fluid, and find things on the grocery list. Erik thinks on deep things and worries about getting cancer, losing his family. He’s surprises me sometimes with what weighs on his mind.
Erik has also developed a lot of fears over the last 8-10 years, something I was sure would never happen. He always seemed the most fearless person to me.
When we were kids our parents used to take us to amusement parks all the time, Kings Island, Dollywood, and county fairs. We’d keep track of him as best we could but he would always wander off on his own. One time we had split up to look for him and I stopped to watch a ride. It was one of those round things, where they load everyone into cars that surround a circle. The arm lifts the cars into the air and starts spinning the willing passengers upside down for two or three minutes.
Those things horrify me. I’m afraid of heights and throw up pretty easily but I was powerless to take my eyes away. I was watching in horror when the face of a passengers jumped out at me.
There was my brother in the center of a group of strangers, smiling huge with his eyes closed. Erik looked completely relaxed. I wondered if that was when he felt the most free. I wondered if he was going to puke. I wondered what it had been like for all the strangers around him when he was in line.
I told you I wonder a lot about him.
Erik didn’t look surprised that I was waiting for him as he got off the ride. He had gotten what he wanted and was fine to join the rest of us wherever we were.
We all laughed and talked about how weird it was that he would enjoy something like that.
I wonder, though, if that’s what it takes to get his mind quiet.
Erik has never been simple. Going places with him is generally a gamble. It can go really well, or not. My family has developed the ability to read his body language and make a hasty retreat when necessary. The last few years have been particular difficult, though, because we truly thought that we were losing him. I’m so thankful for medications that allow him to function, for behavior therapists who know what they’re doing, and for staff that cares for him.
I’m also thankful for community. My friends, my church family, Parks and Recreation, Erik and my parent’s church family, Latitudes, and many others, have made life much easier. They’ve all played a part in finding our way back to normal.
When you love someone who can be difficult there are times that being away from them feels better than being with them. Sometimes it is easier, and sometimes it is necessary to spend time apart. Other times, though, pushing through the desire to avoid complicated feelings gives way to better things.
Things like satisfaction, love, and commitment can be born in relationships fraught with imperfection.
I think we’d all fooled ourselves into thinking we’d found the sweet spot Erik, that we’d gotten him there. There being that magical place where people with disabilities, or impairments, or whatever issue they may have, are copacetic with what we want for our lives.
There is no sweet spot this side of eternity, though, is there? Not one that we can maintain. Situations are always changing, our hearts are always turning.
Erik is teaching me to enjoy the sweet spot when we’re there, and to hold on to those moments when things are rough. He’s always teaching me something. I’m learning about unconditional love in real time (and it’s not always easy). Unconditional love means loving without condition, to love no matter what.
It’s not based on behavior, looks, or how good someone smells.
It’s just love and love and love and love and love no matter what.
Be brave, misfits, and love.
No matter what.
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