Update 2.26: I had to post this one again since it makes me laugh SO hard! I’m so naughty – but no one knew – not even Mommy. But it all came out when I got sick! Last Tuesday after PT I automatically walked back to the pool, got changed and showered etc, and when Leo the Cane and I appeared poolside I found out I didn’t even have Pool Therapy that day! P(38) was so nice, though (of course). I was like, “Maybe I should start looking at my schedule.”
At RIO (3rd Hospital, aka Therapy Boot Camp), I would just sit in my chair and wait for someone to come get me if I had a treatment session. It happened several times that I had been dropped off in my room by the previous therapist and I was just hanging around or whatever, and an aide/tech would walk in and tell me I had Occupational or something, so off we’d go! One morning Mommy came to find me in the gym downstairs and told me, “I found new evidence of your naughtiness.” “What?” I queried interestedly. And she just handed me the crumpled up schedule I had received that morning. “I found it under your bed,” she informed me. I explained to her that I was having trouble with my eyes and I didn’t want to try hard to read the schedule anyway, since I dreaded all the double-headers listed on it, and I had tried to carry the schedule with me, but didn’t know how. I often stuffed paper under my right leg but it often (like my schedule that morning) flew off of my chair and ended up in weird places (like under my bed).
Even though my discarding of the schedule was unintentional, that’s still one of my favorite stories since I only wish I had the motor skills etc. to do such a thing at the time. I protested loudly in my head, though.
I went for a nice walk with PT37 in the Therapeutic Garden at Planet Rehab on Thursday. Leo the Cane stayed behind in the gym since one of my goals is to walk sans assistive device, so we’re practicing. Now I know I said it was a goal but I kind of assumed we were going to work up to it. Mommy, however, has allied herself with PT37 and now just hands her Leo when we meet in the waiting room before Therapy. Anyway, the weather was so beautiful and there were nice long pathways that were also wide – perfect for fitting a wheelchair or two people (one with an abnormally wide stance, like me). After a long downward slope we came to an outdoor staircase. It was actually more like 4 mini-flights and PT37 just said three words: “Up the middle.” I tried to hide my horror, but I think she sensed it since she assured me that she was right beside me, and I could feel her holding the gait belt firmly in back of me, so there really was nothing for me to do except follow instructions.
If I ever hesitated at The Place I’d hear PT6 start talking and I’d look at him out of the corner of my eye since turning my head entirely is risky in that if I’m not looking where I’m going the likelihood of falling increases exponentially. “I’m still with you,” he’d say, or some variation thereof, but the rough translation was always, “Get a move on because I won’t let you fall.” I could usually sense the couple of fingers PT6 kept on the back of my gait belt, but if I couldn’t I’d peer into any reflective surface we passed to verify his location.
I once heard OT6 coaxing a patient out of his wheelchair. His session was after mine and I could see what was going on from my vantage point on the recumbent bike. He was sitting back in his chair, refusing to budge, and OT6 told him with great conviction, “I promise: I will not let you fall.” I think twenty years of experience lent her voice credibility and pretty soon that man was out of his chair, pushing that giant shopping cart across the gym like I used to do.
So the promise of fall-prevention, or just the mere knowledge that a licensed professional is standing next to me has been enough to get me to do all sorts of things in Therapy I’d never do otherwise. This pattern became more prevalent when I became an outpatient. As an inpatient I think fall-prevention was more implied than spoken, plus I didn’t really care at that point – I just did as I was told. We were busy doing things like sitting, standing, and steering a walker while keeping it on the floor, so the risk factor was lower in general. When I returned to Therapy at The New Place in August one of the evaluation tasks was a “Dynamic Gait Test.” This included walking and then turning my head left/right/up/down when PT30 said so. When she explained the instructions to me my face must have been like, Ummm…I think you’re insane – because PT29 immediately put her clipboard down and told me she’d hold my belt while I did this. That was all I needed to hear, and I immediately focused on walking down the hall without any further ado.
I haven’t felt fear like what I felt about learning how to walk, or how to climb stairs without holding on to anything, since I woke up in the 2nd Hospital. I wasn’t lucid at that point and I had no recollection of Mommy telling me what happened for the past month+ so when I woke up I was really confused. I was so scared I’d say anything to delay my parents’ departure for the night. Once I said, “Dad, tell me that thing again about ‘Immanuel, God with us.’” I knew Dad had been enjoying a meditation on this subject and had shared it with me the day before in an attempt to show me how I didn’t need to be afraid. Tanpo drew a chair up to my bedside and settled in and I triumphantly rested in the fact that I had gained an extra 10-15 minutes. (Side note: Mom says she had no idea how naughty I was until I got sick. I’ve always known my capacity for naughtiness. I think it took some skill to hide it from my own mother for 30 years!)
Now that I’ve moved beyond that early stage of fear and disorientation I’ve realized that aloneness is still an anxiety-trigger for me, but knowing someone’s got your back is a powerful antidote. If I ever lift the curtain (even just a little) on how painful it is for me to watch life pass me by while I clutch my stuffed horse (no offense, Ed), even the people nearest to my heart don’t know what to say. I don’t blame them at all – I certainly wouldn’t know what to say, and I’m not sure if there’s anything really to be said in a situation like this. I’m just grateful for their presence and their willingness to play my game of, “Let’s pretend nothing happened!” So yes, this situation has been incredibly isolating, but I just have to remind myself that I’m not alone.
Matthew 28.20 “…and lo, I am with you always, even to the end of the age.”
Photo of the day: Joshie’s first haircut. He wasn’t quite talking yet, but that day he was yelling, “All done!!” with extreme clarity. (That’s how I felt during most of my inpatient life…and some of my outpatient life, too.) His barber worked very fast and the trauma was over lickety split.