Being afraid of something is a completely natural phenomenon that every human being experiences at some point during the course of their life. Fear in children is different to fear as an adult, although some grownups might have phobias that are considered to be childish, ha ha. Some people have very serious fears, while others have mild fears, and some people might not even know some of their fears until they are face to face with them. I am going to talk about my fears as a patient suffering from a debilitating disease that has left me motionless and speechless.
I have a fear of being left in a room on my own with the door closed. Once, I was left alone by my therapist which has scared me; she had finished my session, walked out of the room, closed the door and went home without telling anyone. I could not shout – because I was afraid, my throat closed up and I couldn’t make a single sound. My body then went into spasms due to the tension and stiffness. With every minute that passed I would get worse until finally, one hour later, they checked on me – everyone thought my therapist was with me. Since that day, I am petrified of closing my door.
I have a monitor connected to my caregivers, so when I wake up I just make a sound into the speaker for them to come check on me, it must be close to my mouth or else nobody can hear me. I am afraid of waking up one day and needing assistance, and finding a broken monitor disabling me to communicate with them.
I am afraid of choking on Sundays, you might think ‘why Sundays?’ ha ha, it is because that is the day my caregiver, Nelly, has her day off. She is the only one that knows what to do when I am choking. I am also afraid of needing emergency medical assistance while my husband is travelling, his work takes him out of town a lot.
I am afraid of getting stuck in a locked car with the key inside. On the days I venture out of the house and they place me in the car, they always close the doors while packing my wheelchair because it’s cold, but that scares me as these days cars are programmed to lock themselves. Ha ha, ok maybe this fear is irrational but it’s still a thought that crosses my mind. I am also afraid while flying that the plane might need to make an emergency landing, at which point I cannot go down an emergency shoot, or put on a life vest or swim. I am not afraid of the actual emergency on flight, it’s my inability to react that scares me. When traveling and staying at hotels, I am afraid of the fire alarm going off, because if a fire breaks out the first thing that shuts down is the elevator, meaning that there is no way down and out for me. Again, I am not afraid of the actual fire, it’s my helplessness in that situation that scares me.
Naturally I have much more serious fears about complications in my health deteriorating down the road, but I made a promise to myself not to think these thoughts and to delete them every time they creep up. That way, God willing, these serious scary conditions from ALS might not happen to me. If you believe in something strong enough it becomes a reality, God willing (inshallah).
I think admitting and facing our fears head on is winning half the battle. It is very courageous to admit our fears, but once you confront your fears you will find it very therapeutic. As I just did and feel right now.