I’m stuck. I’m standing outside my hotel room. The door is not locked. And I have my right hand on the doorknob. To get in, all I need is to apply an iota of pressure. But I can’t do it. I've been trying for 45 minutes and I just, can’t. My knees buckle, and I feel myself falling.
Ouch! My face slams onto the floor mat. The mat has softened the blow, but I can’t feel my face and there’s a buzzing sound in my head. I immediately check if I have all my teeth.
Calling for help
Okay, I'm good. I have resisted calling for help. I have been clinging to hope that I will regain the ability to move within the hour. It’s becoming clear to me that I will not.
“Hey Siri, call mum!” I'm shouting because I don't know where my phone is and if it’s near enough to pick up my voice. I no longer care that it’s half past midnight. I no longer care that I might wake up my neighbours.
I wait with bated breath.
“Calling Amy…” The sound of my virtual assistant pierces the night air. “Hello?” My mother’s drawled greeting makes my heart leap. Tears stream down my cheeks. “Ma? I can’t move.”
A desire for independence
In 2016, I was diagnosed with Parkinson’s disease at the age of 31. A neurological disorder that impedes a person’s ability to move, Parkinson’s disease is also known as the “shaking palsy”, a reference to the symptom most commonly associated with it — tremor.
Other symptoms may include rigidity, slowness, problems with walking and, freezing — a sudden and temporary inability to move. The list of debilitating symptoms goes on. The question is, what am I doing at the hotel, and why have I been left alone to fend for myself?
That’s intentional. I wanted to be alone. The decision to spend one night at a hotel downtown by myself was controversial and the subject of many heated debates in my family. So many things could go wrong. And for what, exactly?
Well, I wanted to feel whole again, to feel like my own person, to feel independent, to feel like I own the room and any other room I choose to enter. This feeling is largely missing from my life.
My family's concern for Parkinson's
Since the diagnosis, my parents have watched me like a hawk because they fear that some great harm might befall me if they slacken. And their concern wasn't unwarranted.
This will not happen again. I gingerly unfurl my clenched fists and toes. My inconsideration is hurting the people who love me. I managed to calm down and allowed myself to relax. I will not allow this to happen again.
Inch by inch, I extend and stretch out my limbs. I reach into my soul to yank out one last unit of energy, just enough to push myself up. And then in one fell swoop, I hurl myself towards the door and fumble my way into the room.
I wish that was how it ended.
To be continued…
Do you live with any sleep disorders (eg. insomnia, RLS, sleep apnea) in addition to PD?