April 30th and May 1st 2003 & 2016

Todays’ Topic:    Tawk amongst yourselves.

  

April 30^th and May 1^st 2003

4-30-03 I see Carole from 11am to 12 noon at my hospital. (The session goes so fast.  I am a good patient.  I open wide for the swab and try to feel the cold.  I try to feel the swab.) Coumadin is at 12.5mg Feed 180/ 9hrs

5-1-03    VNA comes, Karri.  4pm to 5pm Carole. (It is late for my appointment.  Carole and so many are heading home soon for the weekend with family and baseball games and maybe a first barbecue. I  am on the ball today.  I open wide for the swab and can get to my suction before she reloads swabs for the next round.  I got it going on.  I try really hard to have something inside me respond, react to the cold swab.  I visualize it. Maybe next week.) Coumadin is at 12.5 mg. Feed 200cc/8 hours

I see Dr. K, my neurologist next week. (I will not ask him why I had a stroke, again.  I will not ask him if I am going to have another stroke, again.  I will not ask him how much I will be able to recover, this time.  I will only ask about the coldness.   This coldness on my right side is savage.  IT feels like ice, only tight and painful ice. It feels like the arm will just crack right off like a broken icicle.   I mean, I feel like ice on the right side.  My right side hurts.  That’s how I should tell Dr. K.  In bed, I have Lola lie on my right side and I imagine her warmth becoming my warmth.  Eventually, if she stays near, I snooze and don’t think of the cold.

I put a call in about driving again.  They think I am more stable, so it will be safe.  When I hear back from the powers that be, I am going to visit school.  I am going to visit when I can drive there on my own.  At least I will walk in under my own steam from the driver’s side of my own car.  They won’t know that, I know.  But I will know and it is something. Everyone says that I am missed at school.  My kids are so young.  They sent me beyootiful cards that all say “get well.”  But some of my school friends say, and I believe, that the kids really need to see me, for real.  I don’t know what they will think of me.  I don’t know how it will help.   But I will go to them because, because… I am unsure how to finish that sentence.  I guess I will go because they asked me to. 

 My suction is sort of disguised in the backpack bag thing.  I can go into the teacher’s bathroom on the pod, just outside the back door of the classroom, before I go in the room.  I can stay near the back door, where there is a light out above.  In the shadows, I can say hi for a minute.  I don’t have to sit down.  I won’t stay long and I can head to the bathroom to suction when I need.  I also need tissues.  I hope I don’t drool in front of them.  But that is only a plan right now.  I have to get the legit ok to drive.

Beautiful cards come regularly from everyone.  I save them for the evening.  I get a lot of love in the mail every day.

Bills come regularly from everyone.  I open them right away. Today is a bill for speech.   Each session with Carole costs how much??????????  $1,843.00    I am sure Carole doesn’t get paid that.  My bill totals $28,900.75 for speech so far.  But I only owe $140.  But I can’t swallow.

 

April 30^th and May 1^st 2016.

        You wish you had smell o’ vision and taste o’ vision here the other evening.  The school day had been long.  The week had been long.  And I was preoccupied, no, be honest worried for someone I know.  I hate that helpless feeling I get when someone I care for is suffering.  Life is not being good to him and I cannot fix it.

 I can hold his hand.  I can look into his eyes.  I can tell him that I KNOW what he is going through.  I KNOW it is hard and it hurts.  I can tell him that I am sorry it hurts so much.  And I can try each time I see him, to allow him to and make space and opportunity for him, to have peace and joy, if only for a moment.  And I can pray.  I pray to accept whatever the day brings me, and keep him safe.

         I did that.  I don’t know how or why I was able to  reach out to him and connect.  I think, no, I know my angels were involved. Thank you.  But the feelings sit and slosh inside me like the sludge in a clogged drain, nowhere to go.  And so I bake.  The day was long, the sun was setting and I bake.  I spy the bananas, just right ripenesswise and too many for breakfast tomorrow.

 I just saw a recipe that would be perfect.   Yahhhhh, like I don’t spend the bulk of my time googling foods… I saw a recipe for Chocolate Chip Banana Bread with Peanut Butter Frosting.   And I bake.  The house smells sweet.  I imagine the sweetness blessing all for the night.  I smile and head to bed.  For the weekend ahead is busy. 

        Jason has his second baseball game.  He is incredible.  The amount of focus he has for the entire game, on the ball in play, on all his teammates and cheering for them, on a player holding at second base that he can chat with, on the location of HIS batting helmet at all times, what his coaches say to him about his “good run to first base,” and his focus on where his fans are in the stands to give a wink to, all this he does.   Proud Momma am I.  And after the game, he downs the water and granola bar I brought for him, and is chatty and smiley and all around ready to carry on with the day.  Phew, much better today.  Jason carries on with the good vibrations all afternoon.  He enjoys the sun and tosses the basketball around with his Dad.  I hear the giggles from both, and I smile.  In the backyard, I make the weekly collection of Gus’ “donations,” for the week.  Then I walk around the yard and water a bit, all the growing things.  The bleeding heart is almost blooming.  It is a new one this spring.  (The contractor from he** last summer trampled my ancient, beloved bleeding heart.  I am not nearly as bitter as I was.)  This bleeding heart is pure white.  I had forgotten it was a change from the old one.  It is beautiful and delicate, but super strong too.  Love it.

        After the yard and Gus are sorted, I tackle the BLUE lights.  Tomorrow is May first. May is Stroke Awareness Month. And as I decorate the house for every season and holiday, of course I gotta decorate for STROKE month.  Our color is blue, as I have told you.  Yes, stroke is a part of heart disease and the American Heart Association.  Yes, the American Heart and Stroke Association are one big organization.  Yes, the color of heart disease is red.

But we are a “Brain Attack.” The Stroke Association makes wonderful Stroke Strings, Blue Stroke strings for stroke awareness.   Power to End stroke has a blue logo.  So Go Blue for STROKE in May, I say.  And I have been collecting blue lights for the decoration. After Christmas, the blue winter lights are on deep mark down and I snatch them up for this month and World Stroke Day, in October.  So today, as Jason and Tim play ball, I excavate the blue from the attic.  I hang up what I have, and get Tim’s help with some of it.  But it is not enough.  At sunset, Tim goes outside with me and he agrees, the house needs MORE BLUE.  Have no fear, additional blue will arrive at the house on May 2^nd and be hung right away. Then I will share.

 My theory is this:  Most people are aware of the pink ribbon for breast cancer awareness.  The cause has done a great job “branding” the color pink and raising awareness, and money. Most people are aware of the red ribbon for heart disease. Most people recognize the red dress symbol to Go Red for women’s heart health is February.  And many public buildings, like the statehouse in Connecticut for example, actually GO RED with lights on Go RED day in February.  Buildings with their lights and people with their fashions, go RED all over the country, for that day.  It raises awareness. I want to do that with BLUE, in MAY, for STROKE. It’s that simple.

One way that awareness is raised for the AHA and ASA, is through Heart Walks.  All over the country, at different times of the year, there are walks in our communities that raise money and awareness for Heart Disease and Stroke.  And, all the money raised by the event, stays in our community and helps with research, advocacy, awareness, prevention and treatment.  The event is local, and those involved are local.  It is a great way to become “a part of” and not be “isolated from.”

My journey with the CentralMAHeartWalk.org began in 2003. I reached out over the internet to the AHA in the fall, and the Boston chapter let me know about my local heart walk.  That year, the walk was in the fall.  It was at Institute Park, which was right next door to where I had grown up.  I had played in that park most days.  And the Heart Walk was there.  I did not sign up ahead of time. I did not join a team.  I did not raise money.  I just showed up, with Lola.  It was fall and everyone was back at school, busy with fall and family.  But we were not.

 I registered for the walk, as a Stroke Survivor.  I remember how strange it was to identify myself as such.  The people at the booth were so friendly, and seemed curious about me and my story.  But I was not ready to do more than just check the box on the form. So we walked, just a half mile that year.  But we did it.  And although we arrived alone and knew no one there, we did not walk alone.  Our former mayor was there.  I forget why.  And as Lola and I started to walk, he joined us.  And we chatted.  I told him that I recently had a stroke.  I knew who he was.  I told him that I had been a teacher in the city, before the stroke. He listened to me. He walked with us.  It was sunny that day.  And I remember that I was not cold for that half mile. 

It was a start for me.  And although I did not continue much with the walk or the AHA/ASA for a couple of years, when I was ready, I came back. And I got strong.  I got involved.  And I got better. I started a heart walk team with the school nurse at my former school.  We raised money by collecting spare change and we raffled off the big cookies.  We walked together and were joined by other staff.  The walk was in the May now and that felt right.  After all, it is Stroke Month.  The walk was downtown.  We walked through the city. We walked by my hospital.  (I walked by my hospital, did not go in, but talked about my time there and cheered for them for saving me. A very healing journey.) I walked with a team of coworkers and friends and their families.  And I saw people on the walk I knew, from the city, from church, from City Hall.  Then they walk moved down near the lake.  It is so pretty there.  That is where it is this year.

Every year I am a part of the Red Hat wave.  At the walk, survivors of heart disease are given a red hat to wear for the walk. I don mine with pride.  I look around and see many people like me walking, all ages, survivors.  Before the walk begins, the RED Hats are asked to stand together for a group picture.  And when they tell us to, we all wave our hats above our heads, together.  And people cheer.  It feels really good to be together.  I love that part. 

Then two years ago, when I signed in at the survivor’s tent,    the hats changed.  There were red hats for heart disease survivors and now white hats for Stroke survivors.  Hmm, I thought, recognition that we are different from heart disease and this is our month.  I like it.  So I put on my white hat with pride.  And I admit, I strutted a bit back outside over to Tim and Jason.  And later, I cried a bit.  (I would cry more, but the spastic muscles in my face get all fired up when I cry.  I can’t breathe at all.  The left side of my face totally locks up for several minutes and snot abounds.  Not pretty.  As it is hard enough to walk a couple of miles, with my wonky breathing, it would be impossible if I were to have a good cry.)     But I want to have a really good cry.  And here is the reason:  for two years, I am the only WHITE HAT I see.  RED HATS abound.  Their numbers are strong.  There are all ages, shapes and sizes wearing the Red Hat proud. 

But I am alone in my White Hat. I cannot see one, even one other White Hat, like me.

You see MOST people with Stroke are not as lucky as I am.  They are not strong enough to walk.

Or they can’t get out of bed.

 Or they don’t know about the walk. 

Or they don’t see themselves as able to get involved with the AHA/ASA as a survivor.

 Or they don’t have any money to share with the event as a survivor. 

Or they only identify themselves as stroke victims.

 

Or they did NOT SURVIVE their STROKE.

  It’s that simple.  It’s that sad. 

But this is a new year and we will see what we see on May 7^th at the 2016 Central MA Heart Walk with Columbus Park Has Heart.  http://www.kintera.org/faf/search/searchTeamPart.asp?ievent=1141392&lis=1&kntae1141392=23756BB7FCB84A0FAD357180009BAF25&team=6641800&tlteam=6478459