Tuesday was Tanpo’s day for taking me to Planet Rehab. These are good learning experiences for the both of us. I get to ask him about things like “sequestration” and try things like walking up a sidewalk by myself, and Dad experiences the 100% caretaker role for his adult daughter who has some very special needs right now. We (aim to) leave home by 8.45am and come home around 1.30-2pm. I have physical then pool therapy, and then we have lunch in the cafeteria downstairs. At these lunches, Tanpo has his “weekly salad” from the salad bar and I have a cup of soup.
They serve a variety of food at the Cafeteria, e.g. this lovely cake. But I always get soup since I’m trying to ignore the natural appeal that food holds for me and getting soup is easy in a no-mobility-required sort of way. I’ve always had a “thing” about food smells – I don’t like going to restaurants that might serve delicious food but will leave my clothes/hair smelling like it. So if I can stay away from a cafeteria line, I will. Now this is a little ridiculous since I almost always smell chlorinated at lunch (since I likely went to Pool Therapy right before). But I guess it’s just easier for me to sit down and ask Tanpo to bring me a cup of whatever the soup of the day is. I would rather rest than examine that day’s meal offerings – I just decided on what’s important to me.
It’s really nice for Mommy to get a little rest, too, since she gets a short break and is able to go to the supermarket, cook, go visiting etc. while she knows that I’m with Tanpo. I think it’s also good for Tanpo to get a little more insight into what’s going on with me. He’s seen me in 3 different gyms (I don’t think he ever actually came into the gym at The Place) on 2 coasts, and crying from disappointment only once. The “crying” incident was what prompted me to write about being an outlier. In general, once I had a better understanding about my situation, I have tried not to be too sad in front of Tanpo because he’s sad enough for me as it is. I’ve also given him a bit of a tough time – before I got sick, I was like, “Dad, I want to go to Africa.” Then I had this big brain thing, woke up after a month+, and the first time we were alone I informed him, “Dad, I still want to go to Africa.” It was Father’s Day.
Hey, I was just trying to make my intentions clear. But the day I cried in the car, I did so because that was the day I understood that some parts of my condition could not be influenced by intentionality. That was the day PT37 told me not to be discouraged, and the day I just needed to cry a little in the car to get it out of my system. Poor Tanpo just patted my hand and told me it was going to be okay. I was better by the time we turned into our driveway.
One of the hardest things about being disabled so suddenly and so comprehensively was losing the power of choice. Before I got my PEG (food tube) out, I couldn’t bear the fact that my nurses could pour stuff down it that would end up in my system even though I didn’t want anything else in me. (They always gave me things for my benefit, e.g. to promote hydration/nutrition, but I was not a good patient in this respect.) When we got home I wasn’t even allowed to stand up (this was when ambulation was only the stuff of dreams) out of my wheelchair without permission. One day, I told Mommy, “No one asked me if this was okay…and this (indicating my condition) is NOT okay with me.”
When push came to shove, though, I acknowledged that God let something really bad happen to me, but then He made me okay with it. His grace won out (although I put up somewhat of a fight) and saved me from a lifetime of anger and bitterness – and that’s important.
p.s. Are you wondering what “ambulation” means? If you click on the link, look for this:
p.p.s. In case you’re wondering, there is minimal overlap between this blog, my “Memoirs,” FB and Twitter.