Life On The Inside is an email newsletter about life with my son who has autism and who has been under house arrest since April 2023. You can sign up here:
It’s nine at night. I’m wiping down the kitchen counters. Starting the dishwasher. Setting up coffee for the morning. All I want is to go to bed, when Mr. Lucky comes out of his bedroom, plops himself onto a stool at the counter and says, “I’ve had a lot on my mind lately.”
I want to cry. I just want to go to bed. I shake my head, no. He starts to speak. No, I say, I can’t listen now. I have to go to bed. He looks hurt and sad, maybe even offended. I come out from behind the counter, kiss him goodnight, and walk away.
I listened earlier. To how customers were mean to him at work. How he got overwhelmed and felt victimized. How the meanness led to an attack of his PTSD. (He says he has PTSD. Maybe he does. Maybe it’s just another of his delusions. I don’t know.) How his manager noticed his mood, sadness, lethargy, and sent him home. I listened and offered words of encouragement. Said “some days work is just lousy, sweetheart” and “it’s good you came home.” And he brightened. We watched a movie. Ordered pizza. And when the movie ended, a much happier young man went off to listen to music.
And then he reappeared, two hours later, miserable all over again. Right back down the rabbit hole, wanting me to pull him out. Again.
No.
I stand at the foot of Mr. Rugby’s bed. Do you want breakfast, I ask. I can’t see him beneath the pile of blankets, but I can feel him. The room reeks of fear and anger, and I'm angry too, at him. He wants me to ask how he’s feeling. But I know how he’s feeling and I don’t have the mental energy right now to wrestle him off the ledge. Again.
Finally, he mumbles a response. I say “excuse me?” And he spits out a yes. Yes, I think, closing his door behind me. You’re hungry and scared and angry with me for not taking the bait.
He thinks he’s dying. That the muscle twitches he’s feeling lately are ALS. He is convinced of it. So convinced, he cries and holds onto me, asking if I think he’s going to die. My son suffers from obsessive compulsive thoughts. He can go a long time between bouts, but when they come, evicting them is almost impossible. I listen. I remind him this has happened before and it will get better. Finally, I make some progress and he brightens. He’s good for a while.
And then it’s back. And I’m back at square one with him.
No.
I love my kids. I’ve made sure they have great medical and mental health care. I am doing all I can do for them. But I’ve got to get home. For me.
Thank you for taking this long, strange trip with me. I appreciate you and your many comments and emails. If you’d like to read parts 1-54, you can do so here.
If you’d like to check out my newest book, BOUNCE: A Memoir of Resilience, you can read the first two chapters free here.
Love you, Sus!
You are an incredible mom. I pray you are not too many more days from being cared for by your hubby; wrapped in sweet nothings and without one decision weighing on your mind.