May 18th, 2003 & 2016

Stroke Awareness Month Tawpic for the day:

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These words are like lyrics to a “fight song.”  The words are bold and determined.  There is no grey area, it is a black and white concept.  I certainly held on to that idea early on after my stroke.  From the moment that I survived the first night in ICU, I grasped this concept.  I knew that I would weather the storm.  And that was all I could do then, just physically cope from day to day.  I could, and did, face each day on sheer determination alone.  It was that simple.  I survived.

But, things have changed for me.  I have changed. (What a gift!) I still survive. It is what I do.  But I also thrive.  I have “grit.”  Grit is a concept that was introduced to me 2 years ago by my new principal when I switched schools after 18 years, talk about change.

http://www.ted.com/talks/angela_lee_duckworth_the_key_to_success_grit

We watched Angela Lee Duckworth talk about “grit” as the real key to success in school.  I identified with her message, as a key for living my life on life’s terms.  She defined “grit” as “passion and perseverance for really long term goals.” I totally agree.  And I have GRIT today.  I want things out of my life and I work towards them with joy and sustained effort.  Do my goals change?  Of course, all the time.  My friend and mentor talks about “making plan A.  Then God laughs and we meet plans B, C, and D.”  Do we still make plans? Of course.  But we are happier if we realize that plans change because we have practically no control over life.

Right after my stroke I survived. My goal was to go home and then drive my car and then eat. Check, Check and Check.  But that was not my truth. That was not the story I told myself.  I believe that my underlying belief and goal was that I would get better and go back to who I was before my stroke. I wasn’t that happy before my stroke.  That was irrelevant.  I wanted to go back to the comfort and security of that “known life.”

What I know now is the ludricrous, insane nature of that story.  How could I go back?  How could I not be forever changed by my stroke?  How can I not be changed everyday, by everything I experience? And why wouldn’t I embrace change?  Change is the real constant in life.  I can count on change. And I can grow and change for as long as I live.  What a gift.

I didn’t see that essential truth for a couple years after my stroke.  Surviving is what I did, because it was all I knew and what I believed about myself.  Don’t get me wrong: there are times now when I survive, because it is what I do.  I focus on getting through. And I do.  And there have been times like this recently.  If you are lucky enough to survive, life happens.

But I do not spend whole days in survival mode.  There are moments where I put my head down and get through tough, nasty things that happen in my life.  Every moment I am not reflecting on the spiritual truth to be gleaned from the strife.  I am not the Zen senior master Shifu, from Kung Fu Panda.  I am not that evolved.  I tend to be more like Po, the young impulsive foodie panda.  I have moments of calm, punctuated by stretches of chaos.  But I don’t live in the survival mode anymore.  Whatever the storm, it passes and gives way to sunshine and new life.

 

May 18th 2003

After revealing my swallowing prowess to Mom on Mother’s Day with the applesauce trick and telling my Dad about the Cadbury Crème Egg incident, I prepared for the ultimate “reveal,” to Carole on Monday morning.  It had been a longer than usual weekend with all the developments.  When I woke up in the morning with the swallow still intact, I began plotting and planning how to break it to Carole.  It had to be, let me figure how to put this, worthy of her.  I mean, I can’t imagine that her job has a very positive vibe.  A lot of her patients seem to be worse off than I am.  She has worked a miracle with me.  And I totally don’t think that she has any idea that it would happen over the weekend.  She didn’t talk to me at all about what to expect, or seem to think it was likely that this would happen, this fast, if at all.  All I can do to say thank you to Carole, is to make it a really good surprise.  I want her to see her success, first hand.

My appointment is at 9:00am at my hospital.  I get there early again, but I don’t tell the folks in the waiting room my secret.  I brought my suction and a wad of tissues.  No one seems to notice that I am not using it.  Don’t they realize how different I am?  Don’t I look different?  Things have changed, can’t you see?  Thank God Carole is on time coming out to get me for the appointment.  She always is prompt, but today I don’t think I could wait an extra second without giving away my secret.  Inside me, I am doing cartwheels and screaming and eating a hamburger.  But outside, I sit calmly in my seat and don’t wiggle even a bit.

I see Carole turn the corner from the hall and walk through the PT area.  Her white coat is fresh and bright on a Monday morning.  I wonder if it is a new coat, it should be for a day like today. I smile and say hello and begin asking about her weekend as I follow her purposeful walk back to the room.  In the room, we sit for a second and she gets set up.  She pulls her chair over to be able to face me.  The swabs are set up on ice in the big bowl.  When she gets up to grab the trash can and bring it over to next to her table, I get up saying I need a tissue or something from the corner table.  Carole nods, acknowledging me.  The corner table has a box of tissues, some cups and a pitcher of water.  That pitcher had become part of my plan the second we walked into the room. My execution was seamless.  As she turned to get the trash bucket, I got a cup and hid it in front of me.  As she sat back down on her chair and prepared her chart and pen, I poured an inch of water into the cup.

I knew she would notice the cup right away when she lifted her head to begin the DPNS.  I would only have a second to make my move.  I sat. I held the cup.  She got a swab in hand.  I began raising the cup to my mouth.  She raises her eyes to me.  I open my mouth and take a small sip out of the cup.  Carole’s eyes bug out.  She cries out loud.  I swallow.  I smile.  She stands up and sits down.  “What did you just do?  What just happened?  No!  Are you ok?” Carole can’t stop making comments and asking questions.  Her face has turned red with excitement and matches her fiery hair.  This is too great.  I did it.  I surprised her, in a good way.  And she did it. She brought my swallow back.

The clock is ticking on our session.  It is 9:09am.  A miracle has been revealed and celebrated in under 8 minutes.  But there is much to be done, says Carole.  The swallow is not back all the way.  It needs to be re-trained in a certain way.  We cannot back off on the DPNS.  The stimulation needs to continue to ensure the swallow does not regress, but instead gets stronger.  I need to follow a strict program of what to eat and how to eat it.

BUT NOT UNTIL TOMORROW!  What was that?  Don’t eat until tomorrow? We will have our regular session of swabs today.  Carole will stop a minute early to schedule a Barium Swallow for tomorrow.  She will set up this special test, with a bit of luck, during our scheduled time tomorrow.  She needs the information from this test to make and submit a plan to the hospital, now that things have changed.  But until I have that test, all things should maintain.

For the next half hour, we will do all our swabs and stimulate the swallow, I hope.  For the rest of the day and night, I will bolus feed the formula into my tube for nourishment.  For the rest of the day and night, I will add the water to my tube for hydration.  For the rest of the day and night, I will crush my pills and get them into me through the tube, to keep my blood running at the right pace.  Until I see Carole tomorrow morning, I will resist the urge to try to eat and drink the old fashioned way, I hope. I will do this because we don’t really know what the status of my swallow is until the test tomorrow.  Carole says we need to proceed in the correct way as indicated by what the test says, for my health and safety.

There is one major exception.  I can “manage my secretions.” I don’t need the suction.   Carole reminds me of this extraordinary achievement as my shoulders sag and hunch with the news about not trying to eat or drink until the test tomorrow.  I try to rebound, for her sake.  I stop frowning and blink back the tears and the whine about to escape my lips, for her sake.  I don’t want Carole to be disappointed with me.  I don’t want her to worry about me until tomorrow.  I will (try to) be a good patient, for her sake.

I don’t want her to get in trouble.  I have been “in the system,” long enough to understand that there are very rigid channels that have to be gone through to satisfy the hospital and insurance.  They want things done a certain way, or they will not “cover” the procedures.  Everything that they do to me, and for me, has to be “authorized.”  Otherwise, if they don’t deem it to be required, I get a big bill in the mail.

It has already begun.  The mail used to be filled with get well cards that came in bright colored envelopes with beautiful handwriting and the best stamps adorning them.  Now the mail is filled with statements, decisions and bills, all arriving in white business envelopes with New Times Roman font in black, printed on the outside.  The contents tell my fate.  What do I get to do to try to get better?  What do they deem necessary for the patient? What am I allowed to try, according to their judgement? I have never met them, but they determine my schedule and progress.  They decide how and when I move forward.  They, whoever they are, have the control and the power.  And it is hard to sit with.  Today, I know that my body is better.  This part is working better.  I know it. But for Carole, I will sit tight.  For the next day and night, I will do it their way.

Tuesday Morning at 9am finds me back at my hospital.  I meet Carole in a different part of the hospital.  We are on the first floor now, south side.  We are in the depths of the hospital, far away from any rooms that might have real light from windows.  I was in this room before.  They brought me here on a gurney or in a wheelchair. I can’t remember which, but I was on wheels.  It was right after the stroke.  They brought me in to evaluate my swallow, which was “absent.” It didn’t take them long to figure out that the barium test was useless.  They put some liquid into my mouth, told me to swallow and then watched as it oozed back out my mouth and down my chin.  Someone handed me a napkin.  They realized that there was not some swallow to be measured.  It could not be marked on a scale of 1 to 10.  It was a zero.  My swallow, and I would argue my spirit too, was “absent,” as defined in medical terms.

So as quickly as they wheeled me in, they wheeled me out.  I remember how “less than” I felt at that moment.  I remember so little about how I felt right after the stroke.  But I remember feeling so insignificant in that moment.  I felt humiliated and degraded to the point that I wished I were dead. I knew that I had no swallow.  I knew I would fail whatever test they were going to have me take.  I knew it.  But no one asked me.  And sure enough, I didn’t even really start the test then, and I failed.  And no one asked me how I felt.

Here I was back again, in that room, faced with that Barium Swallow test.  But today, the room seemed brighter.  Carole was with me this time. That’s a good thing. She makes me feel safe.  This time I walked in the door, under my own power. Today, I sit in the big chair, and do what they ask me to do. This time I have a swallow.  There is something to measure.  I know there is, not that anyone asks me.

And I know what my reward could be, should be for passing the test. I saw the reward last time.  I saw what people get for passing the test when I was in my room on the Neuro floor.  I heard about the prize from other speech patients: Lorna Doone Shortbread Cookies. That’s it! The rectangular yellow package with aqua blue lettering and the red Nabisco triangle in the top left hand corner was the holy grail of my hospital. I am not sure why this particular cookie was the material used to evaluate levels of swallow.  But it was.

And inside, the sugary, buttery, crumbly yumminess awaited and surely satisfied all that gained access.  I remember that I had this cookie down the Cape one time, at Gramma Harriet’s house.  That was decades ago and I had only had a few.  But I remember that they were yummy and I left no crumbs.  I had never bought them for myself though.  I guess I was more wrapped up in cookies with chocolate, like Chocolate Chip Cookies, Oreos or Milanos.  They were my go to choices.  I was too young to go for the simple shortbread.  That was “my grandma’s cookie,” not the choice of hip, happening youth.  How silly that notion…  Here in my hospital, I swear there was a black market ring going on for the Lorna Doone.  I mean, our hospital was cool.  We had a Dunkin Donuts, a pizza shop and a sandwich shop too.  I had smelled the coffee with my very own nose. I had had to sit with my family in the atrium while they ate.  I knew there was “real” food in this hospital, beyond the hospital food, which didn’t look too bad either.

But the Lorna Doone Cookie, oh that golden cookie, had a certain undeniable attraction for all here. Certain nurses had them as snacks. They kept their stash somewhere safe and seemed to give them out to certain patients for special treats.  Sometimes they would run out of the Lorna Doones and talk about when the next delivery might be, like they were on a separate delivery schedule than other snacks.  I don’t imagine the cookies were that much more expensive than other snacks.  Why wouldn’t they be on the same order of snacks and in the same volume and delivered at the same frequency?  Why the secrecy?  Why the mystery?

Carole had a few packages locked in her desk for her patients.   When a patient had Lorna Doones in a session, I might see the package wrapper in the trash can, under a layer of my swabs.  There were never any leftover cookies, not even a crumb.

So today, during the Barium Swallow, my eye was on the prize.  Would the swallow be good enough for the Lorna Doone?  Carole made sure I was sitting up straight in the big chair.  She stood beside me and walked me through the test.  The Lorna Doones were sitting on the table, along with cups of water and applesauce. I kept my eyes on that yellow and blue pouch while I did my best on the test.  I did what I was told. Hold this in your mouth. Swallow this.  Swallow that.  Swallow three times. Wait…Check, Check plus, Check plus, Check plus.

And the prize was mine.  I tried to eat them slowly and carefully, but I admit to rapid devouring of the sweet, buttery, golden, and yummy shortbread cookies. Carole went over with me and sent me home with, a strict set of guidelines for eating. We would continue the DPNS four times a week for a while.  The swallow was not secure, she needed me to know that and be careful.

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She wanted me to set up an appointment with a nutritionist. I would need to start PT too at the hospital to work on my lesser disabilities now that my swallow was improving.  She said the PEG tube removal surgery would be scheduled soon.  All this she said.  And all this I committed to as my new plan.  I could do this, with cookies.

May 18th 2016

The past few days have been a roller coaster.  There have been high highs and lows.  I am not very good with the roller coaster anymore.  I used to live in the drama and crave the chaos. As my students say, “you been there Miss, you done that.” Now I really do better with keeping things low key, middle of the road, kinda routine, and on an even keel.  But sometimes life gets crazy busy and stuff happens.  That is ok, sometimes.  I love that my life is filled.  I would not want it to be empty and alone.  That is my choice.  It is my choice, too, to respond quietly and calmly to high highs in my life, and not react viciously, sarcastically in ways that harm myself and others.  Those are my choices.  And so I agree and often quote Charles Dickens’ words in A Christmas Carol. “May you be happy in the life you have chosen.” Yup.

A recent high, high is the Heart Walk and one of the final activities for the year in that area is the Cookie Raffle.  Every child who makes a donation to our red wagon, gets a raffle ticket with their name on it.  The tickets are kept a big bucket.  If you donate more money, your name goes in again.  So the more you give, the more chances you have to win.  And what you win is a Sugarhouse Cookie.  Each year, I pull out all my heart shaped molds.  I make a double or triple batch of Sugarhouse Chocolate Chip Cookie dough and bake 5 different sized BIG cookies.  The cookies are wrapped.  They are brought to school and my kids pick the winning tickets out of the big bucket of raffle tickets. Image-_4-5_18

This year I made 5 big heart shaped cookies from a double batch of dough.  I love seeing the faces of the kids as they collect their prizes.  “Wow, it’s such a big cookie and it’s shaped like a heart!” exclaimed one second grade winner, with eyes bugging a bit out of his head as he carried away his Big Cookie Prize. What a gift!

Another definite high high was our first time going to the Hanmi Tae Kwon Do “Heart of Massachusetts Tournament.”  Jason actually wanted to be a part of the tournament.  Brave.  The young master suggested that he enter the Forms, Breaking and Sparring events.  He did.  Impressive.  We showed up for the day before 9am to make sure we got a good seat.  Good advice and we followed it.  Inside the school, which I had never been to, were swarms of people from our studio and others.  They were busy getting ready for a day, with their tags and bags, shirts and gear.  They knew what to do and where to go and we did not.  On the inside, I was a bit scared and out of my comfort zone by a lot. On the outside, I hope I appeared calm and encouraging for Jason.  He found a group of his friends to stretch, play and practice with.  I snuggled into a spot on the bleachers and waited.  A young man from our studio, already a black belt, sat quietly beside us.  I had seen him many times at the studio and I wanted to respect his space here today.  But I asked one question about the tournament and that led to quite a good chat. He takes a moment of calm and peace to get ready for the day.  This is his 9th tournament and for him, what works best is not running and playing before, and using a lot of energy.  He needs a quiet moment, and takes it.  He gave me the inside scoop on how things work for the day.  I felt so much the better for the chance to get to know this remarkable young man, just a little bit.

Last year there had been just over 100 competitors.  This year the numbers swelled to 200.  And each competitor has a team from their studio and family and friends to support them.  The gym was packed. Crowds of people I don’t know in a new place, doing something I don’t really understand, loudly, is tough for me.  It is outside my comfort zone. I know that I spend my day in a big, very loud building with 400 or so kids and I only really know 50 of them well.  But somehow, the smells, sights, sounds and activity of my school became a comfort zone to me over time.  This venue is not my school.  And I am a bit uncomfortable. But I am there.  I am glad I am there and I am doing things to make myself feel safe, like talking to the young man.  And I am there with my “mens” and for Jason.  I can show up today. After all, this day is not all about me.

At days’ end, I can reflect on the event.

  1. First and foremost, Jason is amazing.  He is talented.  He is dedicated.  And he was able to maintain great focus in the midst of all the hub bub.  I couldn’t do that.  He won a gold medal and 2 bronze.  I am proud, so proud.  But I can’t ooze too much of this when he’s around, don’t want his head to get even bigger. Tee Hee.
  2. The day was long.  It was 2 hours longer than we thought and we left early.  But all 3 of us had the stamina for the day.  Jason to focus and demonstrate skills all day, and Tim and I to sit stillish and quietish on hardish bleachers.  Well done!
  3. Our studio is the best studio, for us.  The event itself and all the students and masters involved, demonstrated a level of grace, dignity, agility and strength that was, if I were to give it a teacherly grade, A plus-all the way and all day.  Really and truly beautiful to see what they have taught and so many have learned.
  4. Lack of manners, ticks me off. I mean why can’t folks sit down, stay seated and stop talking all the dang time. I wanted to unleash my teacher voice several times in the morning.  Tim helped me see what an over the top loony direction I was heading in. And I did calm down before actually acting on the bezeek thoughts.  I am so grateful for him.  I need a hand of reason in my life.  He is it. I hope I help him half as much as he saves me.

And 5.  Most important note to self: Next year we can bring our own food into the event.  We didn’t think it was allowed.  So I went hungry choosing not to eat what they sold. Tim and Jason went broke trying the foods they sold.  Meanwhile, our studio friends were smarter than me, with a big cooler bag.  I saw it opened and spied 3 bags of cookies, nuts, juice, sandwiches, seltzer, water and a big bag of already unwrapped rolo candies.  They had mercy on me and I ate 3 Rolo treats.  That chocolatey caramel yum on my tongue, vastly improved my mood and made the day better.  Next year I already have a plan to come prepared.  Even if we can’t bring food, we will come.

A low point of the week continues to be some choices that my students make that I don’t think are the best.  The combined effect of their less productive and cooperative choices is a pretty chaotic and kind of hostile vibe in class.  One student, in particular, is seriously struggling.  He is in pain and I can’t take it away.  I hate that feeling.  So I try each day to add sunshine and sweetness to the vibe.  Some days it works.  Some days, not so much.  I am just not that powerful.  But I do have the power to leave that vibe at school.  I choose not to bring that trouble home with me. That is a good choice for me.

Another low point centers around home.  A member of my small, but strong family is sick.  He is in the hospital where he needs to be.  That is a good place to be.  They will help him while he is there.  But I worry.  I can’t make well.  I am just not that powerful.  And worrying doesn’t help.  As a family, we have lit a candle for him and we say prayers.  That we can do.

And stroke creeps in as the day’s final low.   Seems that stroke is never far from me.  It is never far from most, I think.  When one person has their stroke, their family and friends, neighborhood, job and religious community are forever changed.  The effects ripple out like waves from the person who has the stroke all the way out to the edge of their community.  Today, a coworker with one of my favorite names, came to me with sad news.  The father of a staff member had a big stroke last night.  My coworker didn’t have many details.  But he wanted to share what he did know, with me, the resident stroke survivor.  He said that it was sudden and it was bad.  He didn’t know how long it was before the father got to a hospital.  He knew the father had been transferred already from one hospital to another.  We found out from another staff member that things don’t look great to the father who just had his stroke.   His child is of course absent today to be with family.

My coworker came to me and all we can do right now is say a prayer.  Check. We talked about a card or meals going forward, but not right now.  We talked about the heart wagon and heart walk and all the good work we have just done in our little community raising awareness for stroke, getting the message out FAST.  We are helping make a difference in the 80% of strokes that are preventable.  But this father’s stroke is here.  It hit home.

I talked about the present system that gets someone care when they do have a stroke and how I don’t think it’s good enough.  I told him how Time is Brain for someone who has a stroke.  Every minute in the stroke, kills 2 million brain cells.  The right care needs to happen fast.  It is frustrating.  The state is trying to coordinate care, but it is not happening yet.  A possible plan for a better system is stuck in political gridlock. And that is not good enough for me.  My coworker with a favorite name listened to me vent and came out with a great line. The system should “do what makes sense, not only what makes cents.”  A brilliant and probably accurate line.  But stroke doesn’t wait for us to get ready.  It comes.  And it blows one life and all those who care about him, to smithereens.  It strikes fast and severe.  And here it is again, near me.  But I could be there for my coworker, with a favorite name, to talk to.  We could pray.  And we will be there for our coworker in the days to come.  I can be there for people today.  And they come to me, which is incredible to be a part of a caring community who see that I have something to offer.  I am so lucky.  Most people who have strokes are not so lucky.  I just wish for a day when new strokes don’t savage so many lives, quite so frequently.

With high highs and lows, I do what I can to find balance.  I bake.  Tonight after a walk with my 2 and 4 legged “mens,” I made a batch of my own Lorna Doone Wannabees.

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They are too hot to eat right now.  But the house smells sugary and buttery.  My house smells like Lorna Doones! V. Cool.  And with that blessing, I am more than content to climb into bed and cozy up with a cup of tea and a velvet eared beagle.

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