Updated: Mar 14
Have you ever felt trapped? Maybe you felt stuck in an unhappy relationship or an unsatisfying job. Maybe there was a pileup on the interstate, and you couldn't get out of your car or the elevator you are riding in suddenly stops. What feelings might you have in the last two situations? Fear and anxiety come to mind.
Our nighttime routine is full of positioning my body, moving my limbs, and placing pillows and towels to keep me comfortable. Chris helps me with my mask and turns on the ventilator. My left let leg tends to flop to the side, so he puts a small pillow under my knee. I also have what is called drop foot. The normal foot position when lying in bed would be about a 90-degree angle. My right foot is almost a straight line. This has caused severe pain. Chris places a towel under my foot to prevent it from dropping. He then covers me with a sheet and comforter. At this point, I can't move. I can't roll over on my side, I can't move my legs. The comforter feels like it's 20 pounds. I can move my arms a little, but my arms are too weak to move the comforter. I'm trapped. I can't escape. I have had episodes of experiencing panic when I woke up, in pain, and I couldn't move. I think of the future when I will be trapped in my own body. Only my brain, eyes and ears working. This thought evokes fear. I try not to be imprisoned by my thoughts of the future, but it's reality.
The other night I had an experience that really shook me. The fire alarms in our high rise were blaring, and multiple fire trucks and other emergency vehicles were pulling up to the building. My husband was gone. It was me, in my 385 lb wheelchair, and my cat, on the 10th floor. I was trapped. I called Chris, my voice shaking, but there was nothing he could do. People began evacuating.
My neighbor called and said the firefighters were informed of my situation. I was able to smell the smoke. Was someone going to get me to safety? Finally, someone rang my doorbell. My hands don't work well, and I had difficulty unlocking the door. The fireman informed me that there was no fire. Someone on the 9th floor burned something on the stove or in his oven. That person thought it would be a great idea to open their door, allowing the smoke to flow out into the hallway, which triggered the fire alarm. Still, it made me worry, what if there was a real fire? Even the idea of being carried down ten flights of stairs was unnerving.
These are just two examples of my life with ALS. As my body deteriorates and my muscles atrophy, there will be more feelings of entrapment. I have read the experiences of others with ALS in nursing facilities. The staff won't honor the person's preferred method of communication. They have reported that it took thirty minutes or more for someone to answer their call their call light. By that time, they already wet the bed.
I have had experiences with staff not showing up to get me out of bed. Luckily the owner of the agency was able to get me up and give me a shower. I've dropped my phone, taking away my ability to call someone if there was an emergency. One time I fell and had to drag myself across the floor to the bed, where I had left my phone. All of these examples are situations that provoked feelings of fear, anxiety and panic.
There are some things that can be fixed, like wearing my Apple watch and using a phone cover with a strap that goes around my neck. Some things can't be fixed, like the claustrophobic feeling I have when I wake up in pain or have an itch I can't scratch.
I still maintain hope that I will live longer than expected and that I can overcome the feelings of being trapped.