I was practicing the piano in August 2011 when there was a big rumbling sound and the house started to shake. I was still sitting in my wheelchair (“Charlie”) so I turned around really fast and zoomed over to the kitchen where Mommy was washing dishes. She met me in the breakfast room while my wheels were still turning and she hugged me because she knew I was scared. A few days later, she and Dad were taking the trash out and I was back at the piano, practicing like a good girl. At that moment, the light fixture (3 or 4 lights on a track) above the fireplace started to peel away from the ceiling, and I watched helplessly as it came down with a huge CRASH. It was too fast for me to move, and I probably didn’t have the wherewithal to steer to the next room, so I just watched it helplessly and my song dissolved into indiscriminate banging on the keyboard. My parents came in to find me crying and only able to point vaguely at the lights on the floor.
That was how I experienced the earthquake that shook our area that summer. My reaction was representative of how I felt most of the time, early on, and often still do: helpless. Before I could walk, and for a while after, if a noise startled me (which happened often) I would do this crazy rocking/swaying thing in my chair. I’d grip my seat and move from right to left, since I couldn’t/can’t get up and run away. Going shopping with Mom was tough since I was sure to encounter a toddler temper tantrum at some point, and the first time this happened I wept. When Mommy took me on my initial foray into clothes shopping I couldn’t look at things properly since the proximity of other shoppers in the “Clearance” section weirded me out and I decided I would rather exit quickly than look anymore.
I think the fact that I’ve had hearing loss and vision changes makes it even easier for people to unintentionally sneak up on me, so this doesn’t help, either. One day, Mommy was sitting with me at the chapel, and after observing how I was twisting myself around in the pew and pretending it was comfortable, she asked me, “You’re watching your back, aren’t you?” M, my social worker at The Place, told me it was not uncommon to have a fight or flight response after experiencing a major medical event. Flight is not an option for me, and I’ve never been a good fighter (cream puff, anyone?) so I did what I could – I rocked in my chair very vigorously.
These days, I’ve calmed down a bit, although I still startle easily. Now I think that the instinctive response in me that gets thwarted the most is helping. There are tons of disabled people who eat lunch at Planet Rehab’s cafeteria. Most of them have figured out how to compensate for whatever physical issue they’re dealing with and transport their tray through the cafeteria’s lines, into the dining room, and then over to the trash can area with zero fuss. It’s really quite impressive. In the case that transporting one’s own lunch tray is really not an option, there are staff members who assist in this area. The thing is that I have had to stop myself several times from getting up and helping another patient with his/her food. I forget that I’ve never carried my own tray, and that I’m quite impaired myself. But then I look at Leo the cane and remember that it would probably be better if I just stayed put.
Since I got sick I’ve realized that my instincts (e.g. fight, flight, or help) are impaired, not just my body. I can no longer do what comes naturally, so I have to retrain my brain to react differently to situations (as well as all those physical things). For instance, now that I cannot help people, I notice that there are so many others (hospital staffers, complete strangers – all kinds) willing to lend a hand when they see someone who needs it. And when I hear a loud knock on the door, or someone shouting at rehab because they can’t help it, I have a mental checklist that helps me combat the fight or flight urge. Actually, it’s not really a checklist, it’s one point: I’m safe.
One day I sat on the recumbent bike at The Place and cried (discreetly, I hoped) over a Johnson & Johnson commercial that was playing on the TV in front of me. It featured nurses and I suddenly remembered the fear I felt when I was just waking up and didn’t know what had happened. I had begun to notice the sound of the nurses’ call bells in the hallways, which didn’t improve my state of mind. I gripped the seat handles on the bike, squeezed my eyes shut and told myself, I’m safe…I’m safe…
To quote Mr. R again, Nothing’s going to happen to you/me that the Lord doesn’t know about. He told me that in reference to work, but I’ve found myself going back to the same concept for lots of situations – e.g. if you live in a conflict zone, now that I’ve had a huge medical event, etc. Let’s keep it real, though: if you dropped me off on a deserted island, my chances of survival would be slim to none. But on this desert island called RecoveryLand, I am safe.