I am happy in this world, now. And my stroke was and is a powerful teacher. I have someone to love: me, Tim, Jason, my family and friends, students, 4 leggeds and God. I am blessed by their love and it makes me happy to love. I have something to do: put ribs in the crock pot, build a teepee in the garden, give Ciro a midday nosh, go food shopping at Trader Joe’s, take Gus for a walk, make Lime Blueberry Bread, plan lessons for the week, watch The Golden Girls while folding laundry, clean cat barf, vacuum, stack left over lumber to give to a friend to build his chicken coop and fruity cereal marshmallow treats with Jason “just because.” I am blessed with the day’s work and I am happy being of service. I have something to hope for: this day, the next, making my son smile, a hug from Tim, Ciro’s 15th birthday next week, spreading the message of FAST, how good the ribs might be at supper, the banana split challenge I am doing next weekend, a good night’s sleep, seeing my students graduate on June 14th, the new recipes I want to try this week, planting the clematis that might grow better than the butterfly bushes, listening to Garrison and being inspired by his news, helping friends face troubles and walking through the day with them, and enjoying a big, refreshing, bubbly gulp of a new seltzer flavor in a great mug, with no straw, this afternoon.
I am blessed with hope all around me and in me and I am happy when I share hope with others. This is certainly an all-inclusive, A+ recipe for a happy day. I choose this for today.
May 21st 2003
Coumadin is holding steady this week. My daily dose is 12.5 mg. It’s a pretty high dose, but right now it is fine with me because of how I can take the medicine. I can swallow my pills when I drink my water. My Swallowing/Feeding Caregiver Instruction sheet says so. Well I guess it does. The sheet says that the caregiver can let me have “all liquids.” I am my caregiver and I say, I read the sheet and I can have “all liquids” and swallow my pills. I follow “Techniques required to improve the individual’s swallowing safety.” The individual is me and I want to be safe.
For extra safety, and most important to me, I use a bendy straw, all the time, for all liquids. Carole suggested them to me. We always see the bendy straws at my hospital. They make things so easy. The tube gets the momentum of the liquid going and that helps the swallow. The shape helps the most. I don’t have to tip the glass up and bend my head back to take a drink. I can’t bend my head back. I know it will be bad for my artery. I know I will stroke again. I can’t do that. Please let me be safe and keep swallowing today. Please don’t let me aspirate and die or stroke out because I eat or drink the wrong thing.
So this morning I took my pills after I fed all three babies and took Lola out. I followed the techniques, put the pills way back on my tongue. Then I take a sip of water through my blue bendy straw. Today I picked blue. The bendy straws come in the primary colors. Then I make one big swallow and shoot the pills down my throat with the water. Then I take 3 dry swallows after the sip of water. It is a weird sensation to take a dry swallow and have it work. I check to make sure there is no “pocketing” or cheeking of the pills and that my mouth is clear. I use my finger and check. I did it. “Down the Hatch,” is what Gramma Harriet said every morning after she washed down a handful of pills with her bird glass full of OJ. Every day she said it. So now I will do that, just with a straw.
I didn’t eat breakfast today. Or yesterday. I can’t eat bread or bread products, so I won’t have toast with jam. I can’t have cereal with milk either as that is a combination food (solids in liquid.) But that is not why. I really like being skinny. I really, really like it. And I don’t like much about me right now. I enjoy drinking water or eating apple sauce. That feels good and tastes good and I am good at it now. I’d love to eat a banana, but I can’t eat it with the Coumadin. Bananas have loads of potassium and they are not on my diet right now.
I guess that I got out of the habit of eating. And now, I wouldn’t want to eat in front of anyone, except Carole anyway. All the focus has to be on the eating. I have to do my take a bit or sip, then take 3 empty swallows, then take a drink after each mouthful of food and eat slowly. I have to make sure I swallow everything before I put anything more in. I have to make sure there is no pocketing of the food before I take more in. It’s a lot of work. I can’t focus on who I am with. I can’t break break and I can’t be social. How I eat is kind of freaky and anti-social and I am going to avoid it.
I can sit quietly with people. I am not choking on my own spit anymore. I don’t spit into tissues or use the suction. I am not hooked up to the kangaroo and I don’t have to hydrate through the tube anymore. In those ways, I am a lot more normal. I can blend in. I can hold a glass and have a few sips of a drink. But I am not going to have everyone stare at the freak show as she feeds. I don’t need that humiliation. And I do need/like that when I see my friends or family, they can say that I am doing better. They comment on, or I do, how much weight I lost. After all this, I am not fat. That is something to talk about. I just want to blend into the background and be a part of everyone else’s normal lives. I just need a break from me right now.
Today and 4 times this week I have DPNS with Carole. We still have much work to do. Carole wants me to be able to eat breads and combination foods. She wants to make sure the swallow is stable, the reflexes are strong and that I am truly healed and safe. I believe her and I want to do the work. I met with a dietician this week for a one-time thing. She wanted to make sure I knew to eat three healthy meals every day. I do know what they are and how to make them. I told her how much I love to cook and that I can drive so it should be a snap. That is the truth. I told her about what I can and cannot eat right now. She read that in my file, smiled compassionately and made suggestions about the importance of good nutrition. I know I should do it. I know she wanted me to. So I lied and told her I was doing it.
I get to start Physical Therapy this week. Now that the swallow is improving, improving enough to schedule the surgery to take out the PEG tube for real next week, my Doctors want to add in working on my weakness, flexibility, strength and God knows what else. My evaluation was good. I was in my comfort zone, in the big room outside Carole’s office. It was a good place to start. We sat for a bit and I answered a bunch of questions while she took notes. She got my starred particulars up front and on top of the paper, “vertebral artery precaution, don’t extend neck, don’t over rotate neck, basically don’t go near the neck, and PEG tube. On the lines she wrote down that I had a stroke. I had TMJ spasms and left side weakness. She wrote down that I had coldness in my right side, but spasms and tightness on the left, with “gait deficits.” I had a car accident a few years ago and got extensive chiropractic following it. My medications are duly noted. The social history gets me: “lives alone with pets, no children.” That is true. But what does it tell her? Nothing good I guess. She records that I am not having pain right now. Totally true. My body is on mute. She has me walk around while she watches. She has me squeeze the thing with my hand to measure strength. She taps my elbows and bends my knees. I flex my arms and try to squat without falling over. She makes a lot of notes, including that I have glut weakness. Really? I will have two appointments of PT this week and she will arrange them to coincide with my appointments with Carole and not make me do anything that will yank the PEG tube around.
In the end, we sit back down and she writes down my goal: I want to “walk normal,” I say. I can’t believe that is what I said. It sounds so weak to me. My goal? In my head I am screaming about my goal. My goal is to have my life back, to be normal, to wake up and find this was all a bad dream. But all I say is the thing about walking. I am such a goober. Why do I know what she wrote? I have gotten pretty good at reading the notes as they all write them, upside down. I peek at my papers when they get up. I read about myself when they move or look away. I pick them up and scan them when anyone leaves the room during an appointment. I try to memorize what they write about me and say to me. I don’t understand me anymore. Maybe whatever they are writing will help me. Please help me.
May 21st, 2016
Well, it’s been a quiet week in Worcester, my hometown. Garrison Keillor of Prairie Home Companion, a long running music/variety show on public radio, created a town. And every week he takes about 10 minutes during the program to tell you the news of Lake Wobegon. He always begins like I did just now, except with the name of his town. Since I was a little girl, I have loved that opening and that town. Every Saturday night at 6pm in Wessy, we would tune in. https://www.bing.com/videos/search?q=garrison+keillor+news+from+lake+wobegon+feb+14&view=detail&mid=F8844070593A92FE2BC6F8844070593A92FE2BC6&FORM=VIRE
Garrison would open that way, and then go on with the zaniest tales of his townsfolk. I really loved how the everyday workings of his community could be so funny and poignant. I wanted to live there, to be a part of such a community: simple people doing extraordinary things. At the end of the weekly installment, he would have the same closing line: “And that’s the news from Lake Wobegon; where all the women are strong, all the men are good looking and all the children are above average.” I grew up as a child, hearing and wanting to believe him, into a woman and knowing that what he said was true. (And I certainly do live with good looking mens.)
On September 9th, 2009, Garrison had a minor stroke. I remember when I heard the news. I was in a place of recovery, seeing my stroke as a gift, not a punishment for sins committed. Jason was almost 8 months old and thriving, keeping his parents in a constant state of exhaustion and loving every moment. We had just bought our home and were settling in for the fall. My much beloved life at this point was a direct result, I believe, of living with my stroke and seeing it as part of the plan for me. I was living life on life’s terms by that point and wondered how Garrison would weave his stroke into his story. Garrison speaks of his stroke here: http://www.npr.org/sections/thetwo-way/2009/09/garrison_keillor_explains_what.html
And so after the Heart Walk, Botox, Vet visits, baseball, student strife and Tae Kwon Do tournament, it was a quiet week in Worcester. Well, quietish. Monday was school and a staff meeting. The kids haven’t really settled down, but I am handling it better. I am relying on G2 more and focusing on the kids who want to do something, joyfully for the final month of their elementary school. Jason had baseball practice in the afternoon. While Tim took him, I baked fresh muffins for breakus, put supper together and did some writing. I love the quiet, for about 5 minutes and then I start listening/wishing for the mens to come home. We went and hung out with some friends for a cup of coffee and a bit of crocheting after supper, always a good combination. Tuesday was good work at school, for me. I faced the day to the best of my ability. I tried to leave work at work and focus on Jason’s two Tae Kwon Do classes in the afternoon. But my heart hurt from the icky vibes of the day. And I don’t like to hurt. So I got a bit cranky instead. That is not much better for me and certainly no good for the mens. Wednesday and Thursday were good days for the park after school. The fresh air and sunshine always helps. It feeds me some hope for the next day. And watching Jason and all the kids play, with so much passion and energy and joy, is a gift. Maybe if I had played too, the exercise would have helped me sleep better than I did. But the benefits for a bystander are minimal, and I had chosen to watch while they romped.
I got a bit of food shopping done before supper. But Thursday evening, I knew I was off the beam. Hurt heart turned to crankiness and now was on its way to seething putridness concealed under a VERY thin veneer. I kept trying to restart my day, to let it go. But I wasn’t having much success. After supper, I turned where I always turn for comfort, food. Just over a year ago, a dear man and fellow teacher passed away suddenly. He was a truly good gentle man, not much older than I. Whenever times got tough at work and we needed bucking up, we would plan a lunch for our staff. It always did the trick to turn tears into smiles. We all felt better eating together and sharing yummy goodies. I forget what I would bring, but he always made Ham Salad Sandwiches, with pickle and celery, on a soft roll. I never ate ham salad ever, unless he made it. And then it was the absolute ultimate comfort food. I don’t know exactly what the ingredients were in the sandwiches, but I know he added a big ole dose of love and laughter. I know it was in there, because we all had happy hearts and smiles after one of our lunches.
So, at the supermarket, when the deli lady asked if I wanted anything else, a voice not mine said “Yes.” I came home with ham and celery and pickles and a plan to honor my friend and buck up myself with Ham Salad Sandwiches. After supper, I cleaned up the dinner dishes and then went out into the back yard and cleaned up Gus’s presents. Thank you Gus! The mens headed out to play catch and I headed back into the kitchen to mutter and make the Ham Salad. There was a smell coming from the trash can and I had no patience. I didn’t wait for Tim to do it. I didn’t ask him to come up and do it. I did it all by myself. I pulled the trash bag up and out and brought it outside to the shed. But back in the kitchen, it didn’t smell better. It was worse. And I saw bugs and as I looked into the trash can I saw post-apocalyptic toxic sludge and to top it all off, maggots. Flesh eating, corpse devouring little maggots were in my kitchen. And I was alone. I was alone with my stupid seething self-centered childish tantruming self. I did not call to the mens to take care of the trash trauma, so I could make ham salad. Nope. I muttered and swore. Gus, Ciro and Rondo came to watch. It was me versus the maggots. Not a fair fight as I was out for blood right then. Only annihilation would make me feel better. So I gagged three times and grabbed chemicals, paper towels and the trash can. Out the back door I charged. I banged the sludge out into a bag and sealed it and stowed it away, praying the bag wouldn’t explode without oxygen. Or I prayed that it would explode, on somebody who was on my poop-list-du-jour.
The sound of the hose spraying the can, the odor and my cursing brought the mens around to my side of the house. They took over the vile job. I provided supervision through swearing. When I was handed a spotless, sweet smelling trash can, I headed back upstairs to swear some more, light a candle and make ham salad. I thought the mens would be right behind me. I mean, I told them to head directly into the shower and “wash those maggots right out of your hair.”
But they had their own ideas. The mens insisted on finishing their round of catch. Bleech! I went, speechless, upstairs where I changed my clothes and scrubbed up to the elbows. Mystified by my mens, I began chopping celery and pickles for the salad. How could they let the trash get so bad? How did I miss the ick? How could they clean the can without a gas mask and minus the gagging I had for my brief part of the job? How could they go right back to play, after the job was done? Weren’t they full of the heebie-jeebies like I was? They were nasty and gross to be able to carry on with their game, I thought as I mixed mayo and pickle juice. I was up here, cooking and cleaning while the dirty ones freely played, I thought as I ground the ham. And then I heard it. Right as I put all the ingredients together and started to mix, I heard Jason giggling his butt off in the backyard. He was laughing. I was not. He and Tim had it right. Play. Do the work that needs to be done. Play. It was that simple.
And with that, my vibe changed. I took a breath, let go of the work and set about to play with my food. When the mens came up, they tasted the ham salad and right away made sure that tomorrow there would be Ham Salad Sandwiches for lunch on the job that Tim had for Friday.. My plan A was to have it for dinner. But Plan B made the working mens happy at noontime and I made chicken quesadillas for supper Friday, which made me happy.
My mood was improved, but not so stable. I need to keep practicing the positive happy behaviors or I revert to cranky, sullen self-centeredness. It is my default setting and leads to isolation, which is death for me. But I know this about myself today. So, to keep the good vibes rolling, I made a big pot of Gramma Harriet’s meat sauce. Whenever I went to the Cape to see my Gramma, we always had spaghetti the first night. I opened the back door of her kitchen and with one whiff of her sauce, I was happy. I was home. In mild weather, with windows open, I knew what was cooking when I pulled in the driveway. That smell. And she would stir it with a well loved wooden spoon. There would be garlic bread and salad too. And Gramma Harriet would wear an apron she’d made, that I have now. So many times we would sit down to eat, and smile. She would take me to the beach in her sporty new cherry red Corolla and we would put our feet in the sand. Or if it was cold, we would sit in the car together. She would teach me how to sew and then help me make things that were pretty. We would build a fire in the fire place. We’d pick big cucumbers out of her garden and eat them outside, still warm from the sun. We’d go to the Cuzzin’s house and watch cuckoo movies and giggle together. Everything I did with her was special and I knew when I was with her, I was important and we were happy together. (Yes, we had our spats during the summers I lived with her. But even those, she turned quickly into a great story to tell me and her friends. The sour feeling did not last.)
Every time we shared a moment together, Gramma Harriet would say, “this is something for the Good Memory Department.” I would wait for her to say it and then absolutely agree with her. I mean, after all, once I went back to Worcester, she might be lonely and the house would be so quiet. But she would be comforted by all the good memories of our time together. I imagined that Grammas kind of lived on the good memories of their grandchildren. It was a very happy self-centered notion, I admit.
I remember the moment, right after she died, when I realized the bigger truth of her words. It was all for my “Good Memory Department.” Every time she said it, she was making sure we took time to notice the moment, appreciate it then and store it for later days. I have so many things in the “Good Memory Department.” I was there at the time. I was there with one of the 2 best grandmothers in the world. I loved her and she loved me. And she made me stop and be in that moment, with her words. And she made them file into sacred stores inside me to comfort, amuse and hug me when she wasn’t there anymore. Her words, and that practice was a precious secret to living life on life’s terms. It was a gift to me to know what truly made me happy in life.
The meat sauce meal made for me, by her, made me happy. It was that simple. It is that simple still, if I practice. So I made the meat sauce and set it to smell up my house all day. I picked up our new Rain Barrel in Forest Green that morning. We had one, but it cracked quick. This one promises to collect water off the roof and store it for watering the new clematis, plants that will grow on the teepee soon, second year strawberry plants, herbs and many, many marigolds. I hope so. I got the rain barrel and was still home in time to Jason’s baseball game with my family.
At this game, we played on the big field where the National Little League Champs had played their home games. And today, two kids announced the names of all the batters as they came to the plate. What a rush. I heard Jason’s name and saw him smile with pride. I heard his teammates’ names and saw them smile bigger and stand taller too. The kids laughed and ran and hit and tried to catch, and played. Tim and I and all the families sat and watched and cheered. It was a happy moment. It was definitely one for “the Good Memory Department.”
Today we putter about and plant “fings” that will grow. I am trying to make ribs for supper. We’ll see what happens. The mashed potatoes to go with the ribs were tested by all three of us. They are definite winners. I hope there are some left for supper.
Nothing big, but the week has been full. It has been simpler than the previous weeks, even though I try to complicate everything. It has been quieter, even with my shrieks and fits. In a quiet part of the week there was space for the brand new, best idea from Tim. He has a lot of them, if I hush long enough to hear them. “You should reach out to Garrison Keillor. Tell him that you have listened to him since you were so little. Tell him that you saw him at Mechanics Hall. Tell him that you love Lake Wobegon and play his stories to your students. Tell him that you had a stroke too. Tell him about the blog and see what he says. You never know.” My husband is the best; to listen to me, love me and make me and my life better. He is the technology guru in the family. Tim reaches out to the world with his questions, over the net and over the phone. He thinks of these things. I don’t. Strike that, now I do. Why not reach out? So, I just contacted Garrison on the Prairie Home Companion website. I sent a Post to the Host. I used Tim’s words and told Garrison my story. And I feel so good right now about simply sending the email. And I feel so extraordinary to be a part of this amazing family where I get to be with Tim every day.
Every single day he gives me these gems. I think the gifts like that are there for everyone, every day. But you have to look for them, cultivate them, seek them and grab them. I didn’t always do that. I wanted someone else’s life with their grandiose adventures. I specifically did not want my daily struggles and chores. But I do now. They are the simple things that make my life extraordinary today. And in this town, this woman is strong, her mens are good looking and our son is totally above average.