Saturday, March 19, 2011


My 6-year-old nephew is looking forward to living with me because he loves me. He loves the goofy Uncle Matt with the very immature sense of humor who reads comics, gives wheelchair rides and promises him all-night Wii gaming.

Today, though, he got a traumatic taste of what living with Uncle Matt and Friedreich's ataxia is really like. I hope he still wants to live with me.

I fell in the bathroom this morning. Not bad at all. I just did not have my shoes so I could not really stand up by myself. Dad was out at the farmers market, I thought, so I pushed open the door and shouted for Mom. Twice. Nothing. But as the door swung open the second time I saw my little nephew just sitting there blithely playing computer.

I had the exhaust fan on in the bathroom so I could hear less well then normal, but I called my nephew, once, twice, three times, before I heard him say yeah. I had dragged myself to the doorway so I could look out, and I figured once he saw me he would leap into action. Of course, he never turned his head from his computer. Get Grandma J., I asked him, so with eyes still on the computer he yelled, "Grandma J., Uncle Matt needs you."

That brought Mom and Dad, who had returned from the farmers market. Dad helped me, although I learned later his back hurt. Mom talked to my nephew whose face crumpled. I assumed it was because I had needed help and he had ignored me more or less.

After I got back in my chair and got my pants on, I went to see my nephew, who was back at the computer. I told him I wasn't mad at him, which was a lie, to be honest. I don't like being ignored. He whimpered OK. I told him I just couldn't hear him. Again the teary OK. I told him I was fine and I loved him. He said OK. I asked what he was playing to try to get his mind off the teary track, but he mumbled something and I don't think his heart was in the gaming anymore. He did start up a game called "Sorry" if we are looking for subconscious stuff.

His mom came and got him soon after. I then learned that he was crying not because he let me down but because Mom had told him that when Uncle Matt asks for help, you need to get help.

I do hate being ignored, but I hate dragging my nephew into the goddamn world of Friedreich's ataxia even more. I am almost 40 and still can't really deal with it. Am I really asking a 6-year-old to get it?

PS: My sympathy for my nephew waned a little when I heard what he told his mom when she explained that he had to go get help when I call for it. But my game didn't have a pause button, he said.

PPS: This whole experience may have been engineered by my little sister to keep me from writing about day 1 of the Test that Dare Not Speak its Name. But there are two more days!


Ellen said...

In fairness, that's a lesson that all kids need to learn, not only those who live with people with disabilities. I have had similar conversations with Will when he didn't help someone because he was "busy." It's just part of teaching them to be good humans.

Matt Trott said...

Yeah, thanks for reminding me. I know that he knows now. Perhaps, to put a better spin on things: He just doesn't think I need help because I am so cool. I like that better.

Blog Archive