102. The Power of Choice

After the Weekly Soup & Salad

After the Weekly Soup & Salad

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:

Screen Shot 2013-02-06 at 5.39.58 PM

p.p.s. In case you’re wondering, there is minimal overlap between this blog, my “Memoirs,” FB and Twitter.

7 thoughts on “102. The Power of Choice

  1. Ning, that is so so so hugely important… and as a result you are an encouragement and inspiration to us. You always have been, but now in a deeper way.

    Oh, and since I don’t have a twitter account, let me comment on that maze photo here: yyeeeah… I don’t know if I could do that on a good day! 🙂 🙂 🙂 You go girl!

  2. Great post, Ning. Thank you. I think this concept of power of choice is one of the biggest lessons you’ve taught me through your experience – and I’ve since shared your thoughts on this with many people. I also think your ability to see God’s hand and grace in your life – despite how hard [understatement] this is – is a beautiful thing and a lesson to us all. I am so thankful you are not angry and bitter, although it would be understandable if you were, and that in and of itself can only come from Divine resources that are, thankfully, never depleted! Love you lots and keep up the great “ambulating” :)!!

  3. Ning dearest, your daily post is a bonus and booster dose for my day. More healing than all my multi-medication!! You have made me stronger through your blogs. I like the cheerful picture of daddy in the cafeteria. I admire the daddy and daughter’s communication through tears and smiles…likewise mummy and daughter too. Thank you. Keep up the great work. Looking forward to tomorrow’s reading. Well done!!
    All our Love & Prayers. Aunty P.Leaxxxxx

  4. I love that you are blogging and sharing your experiences. I miss you so much and reading your blog makes me feel like I still get to see your smiling face at work. 🙂 Thank you for allowing me to celebrate your life with you!

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