Stroke Recovery & Teaching: the REAL Catch 22

I am TOTALLY grateful (to the point of weeping whenever I let myself really think about it) that my stroke last October was a mild one. A mild right ischemic brainstem stroke, to be precise. My left side was affected. But 8 months, lots of doc visits, oodles of PT, and tons of rest later, I can walk, talk, think, write, cook, knit, mow my lawn, and my singing voice is finally starting to come back. In fact, anything I could do before the stroke, I can do now…just slower, clumsier, and with occasional difficulty.

In some ways, folks like me who have mild strokes are caught in a Catch 22. From outward appearances, we look fine. So people who don’t know about my stroke expect me to be my former stress-driven, obsessively perfectionist, overachiever self: Another nap?!? are you kidding? do you have the flu? are you narcoleptic or just lazy?

Even people who know about the stroke forget that outward appearances can be deceiving. What they can’t see, they forget about, like the mysterious fog that sometimes settles around my brain. My memory can be spotty, and some things my brain stored pre-stroke are probably gone for good. I sometimes momentarily forget really basic stuff, like how to brake the riding mower I’ve operated for 6 years, or why I put a spoon in the freezer.

The old me.

Most people also can’t tell that depending on how tired I am, my nervous system load, barometric pressure, planetary alignment, or my crapshoot theory of life, the left side of my body may or may not cooperate. My left foot sometimes thinks it has cleared the next step, when it really has only lifted an inch off the ground. My writing & emails can be full of supplemental “S”s, upper-case letters, or random numbers/spaces, because my left hand (for now at least) doesn’t always navigate space with the precision I used to take for granted.  Other stuff people don’t see? My constant companion fatigue, an occasional locking jaw, sore or stiff muscles (sometimes from breathing or holding myself upright), rare but annoying confusion…the list of minor gliches is long.

The Catch 22? I’m not “disabled” enough to qualify for disability (even a neurologist can’t “see” most of what’s going on in my brain); in less than 6 months, I used up 15 years’ worth of accrued sick leave, so I can’t work reduced hours anymore; I need my job benefits (O nationalized healthcare…where ARE you?) too badly now to lose them switching to part-time adjunct; I live in South Dakota, where a less rigorous, less stressful full-time job probably pays 3 live chickens and a sack of flour...per year. So, because I have a mortgage and a car, and because I must have only the darkest, oiliest decaf coffee beans on the planet, I’m going back to teaching full-time this fall—a very hard decision.

I recently asked a friend how she managed to teach 6 classes in a semester and not jump off the student union building. Her answer was an “AHA!” moment for me. She said, “I’m a good teacher, but I’m not great.” I think she’s lying, and she probably IS great, but the AHA! for me wasn’t that I need to lower my standards; it’s to be less hard on myself.

The new me.

Here's the deal: the job will not be less stressful or demanding this fall than it was before the stroke. So I will have to be different. I'll manage stress better (meditation, sleep, good nutrition, as much exercise as I can manage). I'll rest when I need to. I’ll be honest (even with myself) about my limits and occasional need for help. I'll cast out my overachiever, competitive, perfectionist, SuperWoman demons. I'll say NO when I need to. I'll focus more on my students, less on my need to exceed. I'll laugh more. I'll relax more. I'll bring my humanity back into the classroom. I'll watch this Taylor Mali vid once a week - http://www.youtube.com/watch?v=RxsOVK4syxU. I'll be less tired, more inspired. I'll be a good teacher.

Road Trip Redeaux Redone

I know, I know…I’ve already done the “then & now” travel edition (http://uncanneryrow.blogspot.com/2010/03/then-now-road-trips.html).  But this is the post-stroke “and now” edition, so you can either bear with me or go do your dishes.

This is what I'll be doing if I ever actually get on the road.

Ray and I decided not to take any big long vacations this summer. I’ll concentrate on continued recovery, and we’ll take occasional short trips instead. The need to stay closer to home came clear to me after last Saturday’s daytrip to Omaha. I was a total dynamo! Mom and Ray could barely keep up! My physical therapist had relieved my heel pain with ultrasound, laser, and iontophoresis, so I didn’t have to limp…drag…limp…drag all day. Why, I was unstoppable!

Alas, pride does goeth before the fall. I’m now paying the price for my haughtiness. I’ve spent the last two days soaking my heel and napping. Okay. Good reminder. Go slow. Pace yourself. You’re not there yet…

Listmaking: Pre-draft one, sketching out ideas.

Now Ray and I are getting ready for our first real road trip of the summer. We’re heading to Kansas for my nephew’s graduation party, and we’ll be gone three days. Getting ready to go is a whole new study in preparedness, because in addition to motor deficits and fatigue, some of the most annoying (and also the most bizarrely fascinating) after-effects of my brainsplosion are a sketchy short-term memory and occasional scattered thinking—thoughts that jump randomly from one incomplete idea to metric conversion tables to a recipe for maple cheesecake.

(Side note: Merhaba! to my regular reader in Cypress, Ciao! to my reader in Rome, Hello! to the rest of you too. Do leave comments when you can…I’d love to hear your voices, too!)

Here’s what I did in my hippie youth to get ready for a short road trip: Throw an extra broomstick skirt and halter top in a backpack (it’s three days…you don’t need those material possessions that only tie you to the bourgeois Establishment, like underwear or a toothbrush). Throw in sunflower seeds and a bottle of Boone’s Farm wine. Go.

Here’s what I’m doing now to get ready: Make the following lists:

List ONE: Things to Pack (include everything you’ll need…if you don’t write it down, you’ll forget it)—Clothes, underwear, walking shoes, iPad, iPod, chargers, pillows, meds, CPAPs, hummus, leftover venison meatloaf (so it won’t go to waste), kombucha, nuts, smoothie stuff, sunscreen, toothbrush & toiletries, filtered water, graduation card & present.

List TWO: Things to Do (organized by day)—Clean bird cages, water plants, make handouts for pet/housesitter (pet feeding, supplements for old dog, treats for parrots, note about ticks/Frontline, using the Mifi, working the TV remote/DVR, thermostat, asparagus picking), dust, vacuum, change bedsheets, clean bathrooms, do laundry, make hummus, pack (see list ONE).

List THREE: Reminders—remember to look at lists one & two. Check things off as you go.

You can see why taking even a teensie road trip is a monumental undertaking these days. That’s why, as soon as I’ve finished compiling, typing, alphabetizing, appropriately highlighting, and printing out the lists, I’ll take a long nap. Bon Voyage!

And the BS continues...

 

I'm pretty sure my neurons fire in pink now.

It’s been 6 months since my right pontine (brainstem) ischemic stroke—BS for short (and for obvious reasons). Unless you’re a neurologist, you probably wouldn’t be able to tell I had a stroke just by looking at me, which has taught me an important lesson: ALWAYS be gentle and compassionate with EVERYONE. No matter how enlightened and insightful you think you are, you can’t see on the outside just how fractured a person might be on the inside. Here are some examples of the weird stuff that might be going on inside...

Example #1: My physical therapist (whom I adore) recently said that stroke recovery hits a plateau at around 6 months. This is standard, old-school stroke-talk. I know she means well, in a face-the-realities sort of way, but that’s like saying, “You’re as good as you’re ever gonna get.” Is this the way to encourage folks to push on? Nosiree. Does this give folks permission to stop trying? Ya, you betcha. So I gave my therapist a copy of Jill Bolte Taylor’s book, My Stroke of Insight, and told her that the book’s author, a neurobiologist, had a massive hemorrhagic stroke and took 8 years to recover. Eight YEARS.

Example #2: Every time someone asks me, “How are you doing? Are you feeling better?” I want to gouge out their eyes with a plastic spork. Yes, this is irrational and perhaps a wee bit extreme. Thankfully, the urge quickly passes. Some part of my brain’s filtering system is still intact enough to think, “No, me…you can’t do that. Just smile and say ‘great.’”

I know people love and care about me and want me to be all better. I know they aren’t sure what else to say. I love and care about them, too. Bless their hearts. That’s why I gag my inner Wendy Whiner, who wants to scream, “This isn’t the flu! I’m not going to ‘get over it!’ I have body & brain damage, some of which may be freaking permanent!” (We all know “’bless your heart’ always precedes something nasty. As in: “Bless her heart. She thinks those leggings fit her.”)

Example #3: I’ve been working since I was 14. So when I walked in the office of our Little Town U disability services person to try and figure out a plan for next fall, I immediately started weeping. Blubbering like a school girl. (Wait! I AM a school girl!) I couldn’t ask any of my questions. I could barely listen as she told me which forms to fill out. I was heaving. I might have hyperventilated...I'm not sure.

“Emotional lability,” the inability to control sometimes inappropriate laughing or crying, is another lingering after-effect of BS and fairly common after strokes. I’m sure the poor woman thought I was swan-diving right off the edge, as she nervously shoved Kleenex in my direction. But really, I was just mad at having to be there at all, and once that hairline crack in the armor got started, the floodgates busted wide open.

How stroke recovery sometimes feels from the INSIDE.

So here we are, 6 months after BS. The most aggravating deficits I still have are constant dizziness, balance problems that make me careen into walls or hang onto things for dear life, throat/vocal cord issues (I STILL CAN'T SING, DAMMIT!), occasional problems with memory and word recall, and near-constant fatigue. But I look pretty darned normal, and I manage just peachy if I can stop and rest or nap when things get exceptionally clunky or hazy. And by gum, I still believe things will continue to improve. I have to remind myself that a few months ago, I couldn’t imagine walking up the stairs to my office, and now I’m walking (slowly, carefully) around campus. Walk. Rest. Walk. Lean on a tree. Nap. Nap.

But students don’t take kindly to an intentionally narcoleptic teacher. I’ve used up my sick leave, and I can’t go back to my full-time schedule in the fall, so after 15 years of classroom teaching, I’m thinking about a career change. In spite of a couple of charred spots, my brain’s ability to put a sentence together is still A-OK and sometimes even clever, so I’m toying with the idea of on-line teaching, writing, or editing, with a flexible, nap-conducive schedule. Or maybe a wealthy benefactor so I can finish my best-selling novel. We’ll see what the Universe sends my way.

In the meantime, I’m plugging away and profoundly grateful for my exceptional blessings: another South Dakota spring (ignore the current April snow), three new family babies on the horizon, surviving another Semester’s attempt to kick me to the curb, a fresh new greasy pound of French Roast coffee beans, and so much more...

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…