Meditations on My Stroke

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Huh? What reindeer antlers?

Random thoughts about BS (my name for an unexpected little right pontine stroke I had back in October):

1.     I am a completely different person now. I will never be the “old me” again.

2.     I am exactly the same as I was before, so don’t be afraid of me.

3.     Chex Mix and chocolate chip cookies are profoundly healing.

4.  Once upon a time, while I slept, undetected high blood pressure sent a tiny clot through an artery in my brain until the clot blocked blood flow (and oxygen), killing off some circuitry in the pons area of my brain. I woke at 3 a.m. because my hand felt funny, heavy and wobbly. So of course, I went back to sleep. When I finally got up at 6 a.m., my left side didn’t work right. My arm & leg were heavy and wouldn’t do what my brain tried to tell them to do (brush the hair out of my face, pull back the blanket, get up, walk, etc.). You have a window of 3 hours to get to a hospital once a stroke starts, and maybe get the miracle TPA (clot buster) drug that can help minimize damage or even prevent a major stroke. I missed that window. My left side is slowly coming back online, but I know now (admit) that it will be many months before my brain has things fully reconfigured.

5.  TV is good cognitive therapy. For example, “Alaska: the Last Frontier” makes me thankful for grocery stores and summer. “Finding Bigfoot” is an excellent pre-nap sedative. And, if the alien overlords judge us by “Keeping Up with the Kardashians,” our planet is doomed.

6.  I look perfectly fine and healthy on the outside. So to you, it may seem like I’m well now. Or, it may seem like all I do is watch TV, read, or eat chocolate chip cookies. But I want you to know that on the inside, my brain is finding new pathways around the burnt-out wiring in my pons as it tries to reconnect with my left side. My brain is holding my left arm in place to keep it from drifting off into space, away from my body. My brain is keeping my left knee from locking up with every step. My brain is making sure my lazy left chest and rib muscles expand with each breath. My brain is forcing the left side of my throat and vocal folds to keep up when I talk or sing. My brain is keeping my left eye centered and focused. And my brain is simultaneously controlling and monitoring every other function of my body. So believe me…on the inside, I am working harder than I’ve ever worked in my life.

Pontine Stroke

7.  The pons is deep in the center of the brain, at the top of the brainstem. Among other things, it contains nuclei that help control sleep, respiration, swallowing, bladder function, equilibrium, eye movement, facial expressions, and posture. So if you’ve seen me since BS, you know I am a VERY, VERY lucky girl.

8.  A dog or cat (or both) in the lap is effective at lowering blood pressure, and picking cat hair out of your food is good occupational therapy.

9.  The brain accounts for about 20-25% of the human body’s energy use. I’m pretty sure my brain is sucking up more than that right now, which is why for now, I need frequent rest, I often prefer a calm, low-stimulation environment, and I’m learning the art of napping. See #6.

10.  A life-changing illness is just that: life changing. It causes one to re-evaluate everything. It brings things into startling new focus. It shifts and solidifies priorities. It allows one to contemplate mortality. It reveals the true nature of relationships. It helps one to let go. All of these are good things.

11. Dear Self: Please drive a stake through the heart of your inner guilt-ridden, hyper-responsible, overachieving demon. This post-stroke recovery period is NOT an opportunity for you to get a bunch of stuff done. Healing is what you need to get done. Period.

12.  For a while after BS, I needed time to get to know the new ME. I didn’t want to see or talk to people at first. But now I’m comfortable with my post-stroke self, even on my clunkiest days. Now I love to see friends & family. Yes, visits need to be shorter than before—I can go about 2 hours now before I need rest. And yes, I might actually tell you when you need to go. But know that I still love you and will want to see you again.

13.  Some days are better than others. On clunky days, my left side reverts to the wobbly lack of coordination I experienced just after BS. I drop things. I have more trouble walking, and I move much slower. I lose my balance. Having a conversation takes effort and concentration. Deep breathing is work. Little things—like frustration or walking to the kitchen—wear me out. On these days, I rest more. I don’t try to measure my progress. I don’t allow myself to think “setback.” I just let my body be however it is and know that soon, I will have another great day.

14.  I am inspired and motivated by Jill Bolte Taylor (http://www.youtube.com/watch?v=QTrJqmKoveU), Ram Das (http://www.youtube.com/watch?v=b30LSiFVxPM), my friend Cindy Kirkeby, my friend Larry Smith (http://ridewithlarrymovie.com/who-is-larry-smith/), and many others who are far braver than me and who remind me that self-pity is a waste of precious energy.

Memorize this!

15.  Sleep is my new BFF. Sleep truly IS the great healer, something most western medicine doesn’t seem to know. In the hospital, they woke me up every hour or two (throughout the day and night) to ask my birthday or to ask who was president. In many rehab facilities, post-stroke folks are given Ritalin or other stimulants to keep them awake. Or, they’re given antidepressants because someone decided they sleep too much. Then they’re taken to PT or OT on the staff’s schedule, not when the patient feels rested and ready for it. All of this SLOWS the healing process, I’m sure. Jill Bolte Taylor is a neuroscientist who, at age 37, had a massive hemorrhagic stroke. Instead of going to a rehab facility, her mom lived with and took care of her. Taylor credits her mom for giving her the best therapy possible—sleep. Taylor’s mom let her sleep whenever she wanted. Then, when she felt rested enough, her mom would work with her at some small task until Taylor needed to sleep again. Typically, she would sleep 6 hours, work at something for 20 minutes, then go back to sleep another 6 hours, etc. My mom, who sat with me every day after I came home from the hospital, did the same. Some days, we would both take a nice long nap, knit a dishrag, then fall asleep again. Sleep helps the brain catalog and retain things in memory. Sleep helps the brain move things from short-term to long-term memory. After a stroke, sleep gives the brain the rest it needs to process “new” information (re-learn) and to re-route information around destroyed brain tissue. Research at the University of Chicago showed that patients with high blood pressure who had a stroke can decrease their risk of another stroke by increasing the amount of sleep they get.

So what’d’ya say? Let’s all have a nap…sweet dreams…

The Big Universal Crapshoot

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Brain injury can lead to wearing funny hats.

Back to my “crapshoot” theory of life. You may have read about it in an earlier blog post of mine: http://uncanneryrow.blogspot.com/search?q=crapshoot. The theory was reinforced by my recent stroke, affectionately named BS. In my previous life (before BS), I considered myself a pretty healthy person. Ray & I are old granola-eating hippies. I “eat like a rabbit,” as my son likes to say, which means very little fast/restaurant food, as much local and organic food as I can get here in the land of livestock, loads of veggies, tons of whole grains and legumes, olive oil, few sweets, hardly any bread, tofu, homemade tabouli, falafel, homecooked soups & stews, and mostly chicken, fish, organic venison, and organic lamb when we eat meat. I’m slightly overweight (good winter insulation for prairie folk), but I’m active, and I work damn hard. Oh yeah…and that granola? It’s homemade, low-fat, low-sweet (honey and agave), with all organic ingredients from the co-op.

In spite of our healthy lifestyle, Ray’s had two heart attacks and I’ve had a stroke. Us—not the bazillions of cheeseburger pounding, beer guzzling, sedentary NASCAR-watching, hairspray wearing, preservative-eating, pork rind and sour cream dip aficianados out there. They’re often perfectly healthy. (Sorry…I’m working on my teensy weensy bitterness.)

Anyway, BS left me with left-side “weakness and incoordination.” That’s stroke-speak for no paralysis or numbness but an inability to use much of the left side. Try touching each fingertip of one hand to the thumb on that hand—I couldn’t do that with my left hand at first. But it’s coming back—I can do most things now, though everything’s much slower and requires concentration. My left knee still can’t quite decide if it’s supposed to lock or not (c’mon Brain…we need a new neural pathway for this!), so it just kind of flops back and forth, and I look like Frankenstein when I walk (ironic, since this is the novel my Honor’s students are studying this semester in my absence). I wouldn’t admit this for a long time…till now, really…but my entire left side was affected, so the left side of my throat is weak, and if I talk (or try to sing) too long, I get tired and hoarse. Also, if I’m upright for a while, my stomach muscles start to hurt just like I’d done 100 crunches. It’s almost as if trying to control (ha! such a myth…) or re-route my left side requires so much new brain and muscle energy that it quickly wears my body out. In fact, any use of my left side seems to require extraordinary effort followed by a nap.

Granola & morning meds...mmm!

I don’t quite have a handle on the emotional baggage of BS, either. Sometimes, suddenly and for no apparent reason, my stomach muscles tighten like a giant sash, and the floodgates open. I’m really good at quickly bringing this under control (hehe...there's that myth again), but I’m not sure that’s such a good thing. One possible disadvantage of immediate and constant loving care after something like this is that one is never alone to really let go emotionally till one is tapped out. I think a person who’s had a stroke, accident, heart attack, etc. needs to grieve for their former life. Otherwise, it’s like a constant shadow a half-step behind. 

Anyway, this probably wasn’t a smart move on my part, but last weekend, we went to the funeral of our friends’ son—a 26-year-old kid just pulling his life together, who died in an accidental apartment fire. We had just gone to his dad’s funeral last summer, making it doubly sad. Then, the next day, I went to our semi-monthly SOPD (Sisters of Perpetual Disorder) dinner. When all 20+ women stood to say they’d do whatever I needed to help me recover, I was completely overwhelmed. I had to beat a hasty retreat, so I wouldn’t burst into tears and turn the dinner into one giant sobfest of gratitude and sister-love. Mom is still coming every day to stay with me. Having my 77-year-old mommy commute daily to the farm to take care of me isn’t exactly how I saw things developing in my life, though I can’t imagine how we would all have gotten through this without her.

In addition to the immediate physical and emotional wreckage of BS, the stroke brought other changes, as well. No more daily caffeine, which for me was dang near a French Roast IV drip. Now, I buy incredibly expensive decaf beans, so I can keep my daily coffee rituals. And I’ve started drinking a bit of decaf tea now & then. No nicotine anymore. Yes, I still smoked, though not that much and only chemical-free cigs. Smoking was a ritual, too…10 minutes on the back porch, watching the rural scene, away from the gizmos and noise…ah. Meds. Before BS, I never took anything except Advil or vitamins. Now I have a daily pill reminder case. Argh. I take my blood pressure at least twice a day. We just finished a sleep study (people with apnea are 4 times more likely to have strokes and/or heart attacks), and it looks like we’ll be picking out his & hers CPAP machines in the next couple of weeks—they come in blue paisley, right? Praise all that’s holy my neurologist said to keep up the red wine because it can lower cholesterol. Giving up wine would have been the last straw…

Ray and I are trying not to BE our health issues, not to be THOSE people—the ones whose world is all doctor appointments, lab numbers, and medical jargon. I like to think the Universe was tenderly hobbling us with these little setbacks, helping us slow down and re-prioritize before we end up with BIGGER problems from which we can’t recover. I like to think I’m learning important stuff from all this. I like to think it’s an opportunity to re-evaluate and re-direct our energies. And I did get a huge batch of yummy granola made (guess what everyone’s getting for Christmas this year?).

Sleep study or Borg assimilation?

These health “blips” might be the result of lousy genes—I just found out my dad and mom both have high BP. Or, they might be from too many vices for too many years—I did have the stroke “quadrifecta”: Stress, high BP, high cholesterol, and smoking. But then, I’m in Walmart picking up prescriptions and plantar fasciitis heel pads, and I get a gander at the people walking about who have NOT had heart attacks or strokes, and in a moment of brilliant clarity I know the ugly truth: It’s just the Big Universal Crapshoot.

The Case of the Disappearing Peafowl

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Dahl, Rapid City - peacock made of silverware.

If you followed my earlier peacock blogs, then you know that 2012—a drought year that drove almost all wildlife to scrounge for nontraditional food—was a rough year for the flock. No chicks were hatched here this year, and after a couple of unsuccessful nesting attempts (something(s) ate all the eggs in two rounds of laying), most of the flock took off for greener, more predator-free parts unknown. So here at the Row, we’re down to 4 birds—2 males and 2 females. Since we typically lose a bird or two over the winter, we’re really down to critical mass as far as the flock is concerned.

We made a single bold attempt to go the pragmatic, stoic homesteader route this summer. We bought live animal traps and set them in the barn. The first night, we caught a very large mama raccoon. The next day, I hauled the cage out to the yard, then I sat in the grass and talked to her about why she was in the cage. I explained that if she’d stuck to frogs and toads and hadn’t started dining on peacocks, she wouldn’t be in that predicament. I called my near-son-in-law over, and our plan was to load the raccoon up—cage and all—in his car, and release her at the river. But then we noticed she had already chewed through several bars of the trap. The vision of her getting out of the cage in his car and wrapping herself around his head while he was driving her to the river was just too ugly, so we decided we would have to buck up and shoot her. He did the dirty work—he talked to her for a long while, shot her, then prayed over her. It was an emotionally-wrenching day for both of us (and a tragic day for Mama Raccoon, too). I’m a huge fan of Yukon Men, with their homemade corrals of strung-together beaver and badger pelts, but I know now that two semi-Buddhist, bleeding-heart pacifists will probably never be good trappers. So I’m in the process of turning the traps into planters.

My peacock teapot.

Anyway, maybe the peaflock’s dwindling numbers are the Universe’s way of lightening my post-stroke workload. I miss the peacocks, don’t get me wrong—at one point, our flock was up to 28 birds—watching them, feeding them, picking up those long eye feathers in the fall…it all brings me great joy. But I’m trying to practice my best compassionate detachment, learning to trust in and be grateful for the wisdom of the Universe.

Jada, Yogi, and a dsplaying peacock.

I keep hoping the flock is out there somewhere, happy & healthy & slowly making their way back home. But they aren't homing pigeons, and their brains are really VERY tiny. Then my friend L told a story about her dad herding wayward geese home with a frontloader because they weren’t smart enough to find their own way. I can picture the peas out there somewhere, wandering in circles and wondering where their corn & cat food buffet went. We don’t have a frontloader, so another option might be to bring in some new peafowl next spring and re-invent our flock, just as I’m re-inventing myself after the stroke. Seems fitting somehow. And now that we know Barack’s in for another term, maybe I can get a peafowl husbandry grant....For now, though, I’m just thrilled to see our 4 remaining peacocks wandering about, and for “occupational therapy,” I’m knitting them all reflective orange safety vests for the hunting/holiday season.

WWCD?

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Among other things, the pons area of the brain (the part I fried in a little baby stroke that I affectionately named BS) regulates emotions. And no matter what part of the brain a stroke affects, depression is often part of the aftermath. For me, this has resulted in occasional spontaneous sobbing. And as much energy as it takes to coordinate my left hand finger movements now, it can take even more at times to keep myself from diving into the bottomless pool of self pity. I LOVE my brain…my brain TURNED on me, dammit.

Then yesterday, I was listening to an OM chanting CD loaned to me by my friend CK, when it hit me like a ton of bricks: CK had a double lung transplant, and I’ve never heard her complain about it. Not once. Not about the disease that led to the transplant…not about the numerous trips to Mayo…not about the anti-rejection drugs. None of it. Oh, I’m smart enough to know that in her private moments, she’s probably let down her guard once or twice. But whenever I’ve seen/talked to/emailed her, she is the epitome of peacefulness & positivity.

So in those moments when I want to crumple to the floor and weep, when I feel old and battered, my new mantra will be: WWCD? I’m pretty sure she would offer someone a big happy smile and a cup of coffee. And bad left hand or no, I can do that too…although now, it’ll be decaf.

Control: the Grand Illusion

I’ts VERY hard for me to ask for help. I’ve never been good at it. But there’s nothing quite like a stroke to knock you right down to diapers, lying around waiting for people to do stuff for you. At least since I had my first kid at age 21, I’ve always been a nurturer, a caretaker. But then I read this quote from Ram Dass, the 1960’s guru, who had a stroke in 1997 and has almost no use of his right side:

“I had gotten power from helping people, and now I need help for everything. That was the grace. The stroke happened to the ego, and when I could witness the pain, my life got better.”

Ouch. Painful, but probably true. Maybe all that nurturing wasn’t entirely altruistic. Maybe it was also about feeling in control—feeling I had some power. And those of us who are less than enlightened tend to define ourselves by what we do: I am the woman who was always in control, who knew who she was, who took care of others, who sang, who knitted, who danced, etc. But I’m having to come around to the idea that since I’m still here and NOT doing any of those things right now, “me” must be something else. Maybe my self-definition was wrong. Ram Dass calls it a "fierce grace." I get it.

But clearly, the Universe didn’t believe I was getting it. So last Thursday, I ended up back in the hospital, this time in our Little Town hospital. I went in for a follow-up GP visit after BS, and my BP was so high that they took me straight to the ER and loaded me up on IV BP meds. Let me tell you—the ER is NOT a place to go to relax and lower your BP. They scared the bejeezus out of me. They didn’t say it, but I could tell by what they were doing that they thought either another stroke or a heart attack was imminent. Thank heaven my body was just toying with them. And with me.

Three days later, I’m home again with a new cocktail of meds. The good news is that my left side is getting stronger, I’m getting some fine motor movement back in my hand, and the new meds make me just relaxed enough to take the edge off the panic attacks that can sometimes plague me when I start obsessing over BS and my brain’s betrayal or my own mortality.

Ray and my mom continue to be the best caretakers a person could ask for. Ray always says that when someone asks if they can do something for you, you need to let them—it's your gift to them, really, because they NEED to do something. So I’m learning to let them—my beautiful friends are ignoring my pigheadedness and tendancy to isolate and are coming anyway, bearing flowers, cards, scarves, and soup. Yes, like Ram Dass, I am slowly re-defining myself, learning to trust my body’s amazing ability to heal itself, accepting the fierce grace of this transition in my life, and reluctantly letting go of the “me” that believed it was EVER in control of ANYTHING.