Today I tried to pay twice at Burger King. I was getting food for my parents and I literally paid at the first window and then tried to pay again at the second. I wasn’t being super nice. I just can’t think straight. I missed going to see Santa with my girls today but I’m thankful for my husband who took them. He made a whole nice day of it for them, lunch, shopping, Santa. When they walked in at home and I saw my youngest little girls new shoes, I burst into tears in the doorway. I needed to get her shoes for months and I just couldn’t get to it. I just can’t think straight these days.
I remember reading “The Yellow Wallpaper” when I was in high school. It may have been the first introduction to psychosis I really had, but reading about a mental health decline is nothing like what it feels like to witness it in someone you love.
I’ve known others who experienced mental health struggles and I felt compassion. I felt a little worried and a little afraid and a little sad. Those emotions weren’t enough. I didn’t know what it was actually like. You cannot know until it’s you, until you’re the one taking a deep breath, saying a quick prayer, texting your sister, calling your brother, trying to cope with what has changed.
Watching someone trace in the air with their hands as if someone is there, with a distant look in their eyes that you’ve never seen before, will stop you. It sucks the air right out of you. It feels like a wave is covering you both and you cannot move. It feels like you are literally watching a movie, some other family, some other situation. But, no, it’s real and it will get worse because Parkinson’s is a progressive disease. There are nights I lay down and I feel like I cannot breathe. I read the percentages over and over…in some studies more than 60% percent of Parkinson’s patients experience psychosis – hallucinations and delusions that in many cases like ours occur all day and all night. There is never real peace for someone experiencing this and that is horrible. The disease robs the physical for all and the mental for many.
Today at the park we sat, both of us in our pajamas, in the middle of the afternoon. We watched the calm water. We ate our chicken and our ice cream, drank our Pepsi. We listened to kids on the playground. We laughed as one kid screamed on the zip line and I told mom that would be her if she was up there. On the way home I said, “Your house is really not far from Edenton.” And mom replied, “It’s really not when you sleep half the way.” And we laughed some more. There are still really sweet, really funny, really good moments. There are scary ones. There are super, super sad ones.
Driving home in the dark I’d wipe my tears away as quickly as they fell so my girls wouldn’t notice. They used to ask, “Are you crying mommy?” or “Why are you sad mommy?” Now they just know and hug me. And I just cry sometimes for what I miss, for what’s to come, for how great a mom I have, and for how much I wish I could fix it.
“One of the hardest things you will ever have to do, my dear, is to grieve the loss of a person who is still alive.”