Mom and I tagged along on Tanpo’s last visit to the Doctor and Mommy let me borrow a wheelchair in the lobby. So I happily whizzed around and felt the wheels running through my hands and leaned on the brakes when I needed to scoot up in my seat. I never thought I’d miss my old chair (Charlie), but I do. When I was just learning to use the walker instead of sitting in my chair I told my friends J&O that I preferred sitting in the chair since it allowed me more freedom – my parents were okay with me wheeling myself down the hall, but any walker usage had to be heavily supervised.
Even though I now feel comfortable and am allowed to clomp around the house with my cane I prefer to sit in a wheelchair in uncharted territory in public, e.g. a crowded venue or very bumpy terrain. So this summer I tried to convince Mommy to let me buy a wheelchair. She was not entertaining any suggestion of regression, though, since she knew that if I could wheel myself around I’d do it more often than was healthy for me, so she refused to let a wheelchair enter our house. What we finally agreed on was that I could purchase a transport chair (a wheelchair has big wheels in the back that you can manipulate yourself but a transport chair has smaller wheels and requires that someone else push you). I chose a blue one online and happily rode my way around GWH on Labor Day .
So Mommy made a concession, and now Charlie Jack II, my blue transport chair, is a happy member of my family of exercise equipment and assistive devices. He is currently parked in the garage along with Cousin It, my rejected quad cane. In all fairness, Cousin It really is a good quad cane – it’s just that the base got in my way when trying to walk, plus it makes the cane heavier – so I ditched him in favor of Leo, the single point cane. Anyway, I’m so glad Mommy made that concession and we reached a compromise.
It satisfied my wheelchair longing without inappropriately fostering wheelchair dependence. For all the time I spent hating my wheelchair when I first had to sit in it it’s heavily ironic that I now have wheelchair “longing.” Since my midsection’s muscles still work I can sit in one without fear of sliding off, so I think the positive feelings I have for the chair are rooted in the sense of safety it provided. It was also what became “familiar” to me after I woke up, and since I never saw my apartment or most of my belongings again, something familiar was wonderful.
One day at The Place I was seated in a regular chair but needed to scoot closer to the table so I reached down to where the wheels should have been and then remembered that wasn’t in a wheelchair anymore. It’s amazing what becomes “normal” after a while. Now I recognize the behaviors that used to characterize my recovery, and sometimes still do. I regularly see other patients doing the rocking and mental counting that precede getting out of a chair. I also have “handbag” radar – meaning I can spot if someone’s holding their arm close to the body, usually palm up as if they’re toting a handbag, if their arm has been compromised (see photo). For a couple weeks this summer I was especially conscious of how my own left arm (though vastly improved from my inpatient days) poked awkwardly from my trunk like the claw that sticks out of a crab ball when you go eat dim sum. (That was for you, TCB.) So I told my sister I was going to do “that Bob Dole thing” and hold a pen (or a chapstick, tube of lotion…anything I could find in my purse) so that it was occupied. Yeah, that SO didn’t help. One of PT37’s favorite things to tell me is to relax my left arm. She even says this when I don’t think she’s looking in my direction! So now I often practice swinging my arms when walking and say things to Mommy like, “See? I’m swinging my arms very naturally!”
This photo was taken in the 3rd Hospital. I’m wearing a medal around my neck my internship manager, P, sent me from Israel. He received it in a race he and his colleagues ran in my honor.
Holding a pen or whatever I could find was a bit of a concession for me, meaning that it was an acknowledgement that my body works differently now so I might need to find alternative ways to do things. I haven’t made a whole lot of concessions since I’m kind of stubborn in this regard plus no one has mentioned anything to me about learning braille etc. so I’m assuming I’m expected to eventually figure out how to do things like I’ve always done them. At least that’s the story I’m going with until someone tells me otherwise. A few months ago I did make a huge concession and tried to write some stuff using the Dragon app on the iPad Ernieboy gave Tanpo. As I exited the room I used to say, “Bye bye. I’m going to go talk to my dragon.” Sadly, however, my speaking voice isn’t overly clear, so speech recognition software isn’t a fabulous solution for me.
So my concession-making efforts haven’t been a huge success. I’m not overly broken up about this since I automatically cast a negative pallor on the term anyway. Actually, there is one context in which I unreservedly enjoy “concessions” – going to a movie. Ed likes to go to the movies just for the concessions. He and Frank* used to go just to eat Mike & Ikes, Good ‘N Plenties and lots of popcorn. What was playing on the screen was inconsequential – they were too busy washing all the snacks down by guzzling Dr. Pepper.
At this point I only enjoy this kind of concession mentally since I’m trying not to eat everything in sight like I want to. I guess sifting through the possibility of other kinds of concessions has to be a very mental process, too. As I understand it any future concessions I make won’t be permanent. I’m saying that because I don’t want to get too comfortable with my workarounds. Example: as an inpatient it was okay to do stuff using (mostly) my right hand. It was like, Yay! You brushed your teeth and washed your face yourself – good job. As an outpatient it was like, Use it or lose it! Meaning, that left hand better get in on the action before Mommy ties a giant oven mitt on my right hand.
This is the Catch 22 of my recovery. I am not dealing with the devastating permanence of paralysis or amputation – I’m in a constant state of transition where how you did something yesterday may not be acceptable today. But as they say…change is good.
*Frank is my “Happy Heart” – here’s an explanatory excerpt from my “Memoirs.” FYI Frank has moved to Africa and now lives with the J’s. They don’t know this so let’s consider this post to be the formal introduction of the newest member of their household.
Frank’s full name is Tan Thien Frank, and he is my happy heart. Ai Ai adopted the phrase “happy heart” from a friend of hers, and our entire family has found it to be a useful way of promoting a cheerful and thankful attitude. The grandkids are sometimes instructed to “go find” their “happy heart.” I personally appropriated this idea around October as a way of coping with my feelings. I told Mom that my happy heart had suffered a bad stroke and was being slowly rehabilitated. I picked out a corner window at The Place and told Mom that was the room where he was staying. Every time I went to therapy I said I was going to visit Frank and was bringing a basket full of toothsome goodies Ed had prepared.
My story extended to the point where Frank was getting kicked out of the hospital on Christmas Day because the nurses couldn’t take his bad behavior any more. They had found him one too many times down at the vending machines that I had seen on one of my tours of the hospital with PT6. Ai Ai added the detail that his favorite selections were Hot Fries, Munchos and Funyuns. After the first vending machine infraction I told my sister that the nurses remarked, “Wow – you really can fit a wheelchair behind there.”
When Christmas came I said that Frank now lived on a post-it note my eldest niece, Hannah, had put on my bedroom wall several years ago. In addition to this note, Hannah had also placed some sticky arrows of the “sign here” variety on my wall to remind me which direction to run in case the house caught fire, and there was another set that served as my instructions to “stop, drop, and roll” in case I caught on fire myself. Of course I have preserved these early works of functional art, and Frank is comfortable on Hannah’s sticky note. Furthermore, it has been helpful to me to imagine that Frank needs Ed more than I do, so Ed no longer rides around in my walker or supervises my home exercises.