I mentioned before that my biggest fear is not knowing how much longer I have to live. My fear of death is more of a long-term, always-in-the-back-of-my-mind type of fear and usually does not largely affect me on a day-to-day basis. I have another fear though, and it toys with my mind almost every day, or night I should say. This fear is completely unjustified, slightly embarrassing, but very real. I am terrified of being stranded in my bed.
As you know, I can’t do much of anything on my own, including getting in and out of my bed. Every night, someone in my family lifts me out of my wheelchair and puts me in my bed. I am so weak that once I lie down, I rely on other people to move my body and limbs into comfortable positions. Once I am in a sleep-worthy position, usually on my left side, curled up like a baby, the family member that helped me with the transfer turns off my lights and leaves my room. This is when my brain starts to run wild. I will explain what I mean in a minute, first, some background.
If I ever become uncomfortable or need to roll to my other side during the night, I have to yell loud enough to wake someone up so they can come help me. This reliance on others to stay comfortable is where my fear of being stranded in my bed arose.
When I was a young kid, say six or seven, there was one single incident that I can remember that I believe started this whole stupid fear. Our family used to live in a 2-story house, which is absolutely the worst living situation for a family with a kid that can’t walk. All of the bedrooms were upstairs, so every night, my mom or dad carried me up that flight of stairs to put me to bed. Since I was young, they made me go to bed a lot earlier than they did, so they would put me in my bed and then go back downstairs. My parents used a baby monitor well past my baby years; they had to, or else they never would have heard me calling for someone from all the way up in my room. I remember getting anxious between the moment I yelled one of their names and the moment I heard one of them start to climb the staircase. Did they hear me? Should I call again? And I often did call them way more than I needed just to make sure they could still hear me.
Anyway, there was one particular night when my mom put me to bed and told me that her and my dad were going to sit out on the front porch for a little while. My six-year-old brain did not like this because of the distance and walls that would be separating me from their ears, but my mom assured me that they would have the monitor on and that I would be fine. She left my room and about 10 minutes later I decided I needed to call them to make sure they could hear me, so I did.
No reply. No footsteps. I called again, louder. Nothing.
Panic started to flood my body and I continued to yell for them. Little did I know the monitor had died and they couldn’t hear me at all out on the front porch. I began to cry frantically, all the while screaming for them at the top of my lungs. I was completely certain that something terrible had happened to them and I was going to be stuck in my bed until I died. For a good 45 minutes I tried with all my might to call someone, anyone, for help. When my parents decided to come back inside they immediately heard me screaming HELP ME as if I were in serious pain. They ran upstairs and calmed me down, but I was already scarred. The reality that I am absolutely helpless in my bed became burned into my mind.
How does this fear affect me today? I can’t sleep with my bedroom door closed. If I ever go to bed before my parents, I lay there and worry until I hear them both go to bed. If I know that only one person will be home in the morning, I wake up before everyone else leaves and get in my chair so that if something happens to the one person staying home, I won’t be stranded. I literally have never taken a nap during the day because I’m afraid that when I wake up nobody will be home and I will be in pain.
My brain tells me that there is nothing to worry about, that my family knows I can’t be left alone in bed. But there is always that tiny “What if?” that ruins everything. What if I wake up in a considerable amount of pain and my dad is at work, my brother is at a friend’s house, and my mom falls and hurts herself in the basement?
I am laughing just writing about this stupid fear, but after experiencing that feeling of total helplessness, it’s hard to convince myself that everything will be fine.