April 9th, 2003
Today stands out. It is PEG Tube Day. My swallow has not improved. Carole comes to check and there is the beginning of talk about something called DPNS. No idea what that is. But that is not for now. The sugar water drip is not enough for the doctors. They tell me that they are going to put a feeding tube into my belly. A tube will go directly into my stomach and hang out of the hole about 6 or so inches. They will hang a bag of food on a pole. They will connect my tube to the food bag tube. And a machine will drip the liquefied food stuff down the tube into my belly. They say they will set the machine at a slow drip pace to begin. I will be “eating” almost all the time, for a while. I nod that I understand.
In my head, I picture spitting into my suction tube which leads to the “secretion” collector tub on the wall and down at my belly is a tube that leads to a bag of food on a hook. I see a circuit of machines making my bits and bobs function. I sure hope they don’t confuse my tubes. I sure hope they understand what goes where. This sounds a bad plumbing job to me. But to the doctors, I nod my head. They say that they will increase the flow of food and then I can disconnect from the food pump and “ambulate with greater ease and independence” for periods of time. Ok. They say that if I get my swallow back, it is very simple to take out the PEG Tube. IF? I heard that.
Again I nod. And while they talk more about the specifics of the procedure, I take a deep breath. Very faintly, from far away, down a corridor and out in the Atrium of the hospital, I can smell the distinctive aroma Dunkin Donuts coffee. I never knew the smell of coffee could travel so far. But it does. I know it wouldn’t be the same, but I wonder if I can put coffee in the feeding tube? Now the doctors are talking about how long the procedure is, how tender the “site” will feel for a while, how the “tube is foreign to the body and the body tries to reject it.” They will show me how to care for the tube, tuck it into my clothes (when do I wear real clothers?) or tape it to my belly after it heals a bit. By “they” I hope the doctors mean the 7am to 3pm nurses. The daytime nurses will make this ok. My roommate will be there. This will be ok. Right? Crap…the scream inside my head is back. STOP Please STOP. What happened to my life? What happened to me? Why me?
April 9th 2016
Today I get to bake first thing in the morning. Peanut butter is my flavor craving du jour. But it was National Coffee Cake Day earlier this week and I have a great new recipe to try. I opt for chocolate cake with a swirl of peanut butter and oreos smashed up. The coffee cake will happen tomorrow. I have two stroke events/meetings next week and I gotta bake for them.
I get to break out the bread machine and we will have fresh bread to go with spaghetti and meatballs tonight. The bread machine is my dad’s. When he moved back to Wessyfoo from England, I wanted him to have a bread machine like he had at the cottage. And it is a good one. (Should we name it?) So when he moved back to England to a lovely Alms Cottage in the village, I grabbed the bread maker back. The idea of fresh bread waiting for me as I get home, heavenly. Today the machine, who does need a name, is making whole wheat Italian herb bread. With a shmear of butter or a drizzle of garlic olive oil, I drool thinking of it. 
(But I drool a lot anyway. Ha! Morning Stroke Survivor Funny! I am laughing. Really. Don’t think I am making a jab or feeling bad for myself or trying to get you to feel sympathy for me. I am way beyond that. Finally. If you aren’t laughing, do me a favor. Picture Sophia from the Golden Girls. In my life, this show is sacred. In my house, Jason and I can do entire episodes back and forth. Sophia had a stroke. And she make jokes. And everyone laughs. We get to laugh. And laughter is great medicine.)
At 10am, we get to go have breakfast at Donut Café with wonderful newish friends. Here’s why. Jason is testing for his Blue Belt in Tae Kwon Do today. And two friends are testing too. Students test every two months if they earn all their stripes. We created a new tradition several belts ago. On testing day, we go fuel up with a great sustaining breakfast. Jason always gets scrambled eggs, bacon, oj and then a blueberry pancake (the size of my head) with confectioners sugar on top. We sit near the cook and watch his theatre as he creates the orders. It is the best, and yummiest show in town.
We get to go watch Jason test for his Blue Belt in Tae Kwon Do at noon. The overwhelming positive impact that this center, the family at Hanmi, is incredible. We get to sit and watch every student at every belt level test. And family and friends get to be a part of this. We see the growth, power, grace and strength. (As a teacher I love that students are invited to test when the teachers know they are ready. What a concept!)
After we get to spend time together and go for a walk with Gus in the hood. I get to crochet a bit. We have coffee with friends and talk about the progress of the bald eagle nest and eaglets that we watch. We get to visit a friend and see his bee hives and Jason is naming the new chicks that will lay eggs in the summer. We get to come home and eat all the yummy food.
What a gift. I keep saying we “get to” do all these things. What a difference in my day to say I “get to” versus I “have to.” Beloved friend and mentor shared this with me. “What happens when you say that you get to do things instead of whining that you have to?” The results are huge. The change was simple to make. The practice is possible. I “get to” have this day! Thank you beloved friend. You make such a difference. I am grateful.