“I know you’re going to do what you want to do. But I worry about Mom’s health and yours. I fear we’re going to be in the same boat we were 6 months ago. I just want you to know that.”
“I don’t want to talk about that just yet.”
I told my Dad how I felt, and I left it at that. I knew he was bringing her home from the nursing home. But I wanted him to know how I felt.
She’s home now. My mom has chronic Lyme Disease. It’s a nasty, vicious disease that simulates various symptoms of MS. The CDC is unwilling to acknowledge it nor identify it as a legitimate disease. This translates to: no funding for a cure, treatment, nor management of symptoms.
What does this mean for Mom? A slow deterioration of her nervous system. The inability to walk. The inability to move her hands. Some brain deficiencies. And it only gets worse and worse.
Mom’s been sick since I was five. To say one gets used to it is not hitting it directly. I’ve only known her as a sick person. When I was five, playing with Barbies and watching cartoons, she was lying on the couch with a nurse inserting IVs into her arm. I watched her lose the muscle control of the left side of her face. It was scary. I was sad for her.
Now we’re on the path that leads to nowhere. Day-to-day, Dad uses mechanical contraptions to help her go to the bathroom, to help her get in bed, to help her live a life. I help, but feel helpless.
There’s no happy ending to this story. She will eventually become a paraplegic. It’s just going to be hard times ahead. On good days I find hope in the belief that God gave me struggles to become a better person.
On bad days, I just don’t feel anything at all.
I’ve got to make it through this. I’ve got to be able to carry this and keep going.
Right now I’m using every tool in my toolbox. Im scrounging around in the very bottom of it, searching for what’s left. I’ve used up all the ink in my pen, my voice is harsh and strained from all the talking and crying and my mind is drained. I have very little left.
I’m angry and hurt and I’ve lost the ability to express myself in every way imaginable. I have no map for this awful terrain.
I’m on my knees begging for help.
I’m going to lay down now and hope that my thoughts dont follow me to my pillow. Music, tv, any distraction – just please work so I can have one peaceful moment outside this reality.
I have work in the morning, in just a very few hours. Please just let me sleep and when I wake up, please make this nightmare disappear.
My eyes open but I am not awake. My body stands up, but I remain in bed.
Eventually, I realize I am in the car and I am driving. I listen to the soft drumming of the guitar and the tinny hum of the harmonica that once pressed against Bob Dylan’s lips to make the recording I’m listening to today. I feel nothing. I desperately desire to feel something. I tug at the hood on my head and nudge it forward to fully close off what surrounds me.
I pace forward. Each step is hard work. I follow the procedures at work – turn on the lights, plug in the machine, push here, pull there, click-click goes the key in the lock. Inside my mind a dullness sets in. It makes a quiet buzzing noise, enough to distract me from anything occurring around me, causing me to have to strain and lean in and ask “can you repeat that?”
I keep breathing in and out – a sign of life. I am able to crawl along with my duties, just enough to get by. Soon I will leave to the comfortable space of my car. I may linger longer in the car when I return home. Maybe I’ll watch the rain fall onto the windshield for a while.