October 2003 & 2016

October Coffeetawk Topic: (Never be ashamed of a scar. It simply means that you were stronger than whatever tried to hurt you.)

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ROCK ON, I say! I embrace proof of my strength, reminders to me and everyone else that I am a survivor! My stroke left scars to be sure. But it wasn’t out to hurt me. Stroke was doing what stroke does. Life does what it does. Life is not out to get me either. I am simply not that important.   Feeling ashamed of my scars. Nope. I’m kinda beyond that now, I hope. I think. Most days anyway. (I admit to a once in a while bout of shame when I have behaved badly. I own it.) When I was young, I lived under a shadow of shame, humiliation and embarrassment for whatever colossal sins I believed I had committed. I vacillated between the cocky egomania of being a free and fresh young thing, and a less than, bottom-of-your-barnyard-boot-scraping, wasting your time, never living up to your ideal, unworthy nerd-turd hiding in the dark stairwell. I wasn’t then and am even less so now, the center of the universe. The sun never rises and falls on me. (What a relief!) I couldn’t possibly have earned the level of shame I felt. I amplified and exaggerated everything. Reality? What was that? I felt responsible for things way beyond a child’s control. And I felt ashamed of myself. The emotional whiplash sustained from ricocheting between these two extremes, certainly scarred my spirit. Forget what life did to me, these were scars all of my own making. And they ran deep.

I’m going to pull a teacher move right now to help me get to the heart of this quote.   I’m looking up 3 of the words from the quote. They are not difficult words: ashamed, hurt and scar. I have used them a million times and feel confident I could give an A+ working definition of each. I asked my kids today and sure enough, they all had terrific definitions of these three words. But what these 3 little words mean to me, has changed so much since my stroke. The meaning and thinking about this quote as a whole, strikes this survivor to the quick. My scars and I are certainly on a journey. That I know. I hope this means that I have changed, as the words cannot. Maybe…

  1. Ashamed: embarrassed or guilty because of one’s actions, characteristics, or associations.

“You should be ashamed of yourself”

Synonyms: sorry, shamefaced, abashed, sheepish, guilty, contrite, remorseful, repentant, penitent, regretful, rueful, apologetic

Check. Check. Check. Check. Check.   I continuously felt sorry for things I had done, remorseful for personality and physical traits that were part of my basic make-up, and apologetic for people, places and things I associated with, that I perceived to be wrong. I had the wrong friends or no friends at times. It was my fault. I was unlikable. I am so sorry that I wasn’t better in school or sports or applying make-up to my pimply, plump face. These are some of the stories that I told myself. I chalked these tapes up to teen-age angst or young adult jitters or living in a difficult period of history. Ugh.

With my stroke, I lived in new dungeons of shame. I was ashamed first off, that I had a stroke. It was an old person’s disease. I was young. What had I done wrong? Why me? It must be payback for something.   I was ashamed of me and my droopy face, drooling mouth, broken swallow, stunted gait, slurred speech, inability to work, status as patient in a hospital and then a nursing home. It took years to not feel ashamed at the changes in myself. It took practice and patience to grow to embrace those changes. Even then, I was ashamed of the scar that the feeding tube had left on my belly. Curious. I had survived. I was happy with the gift of being alive just for today. I was good…but not about that scar.

 

hurt:

cause physical pain or injury to.

“Ow! You’re hurting me!”

synonyms:       injure, wound, damage, abuse, disable, incapacitate, maim, mutilate, wrench

Check. Check. Check. Check. Check I systematically felt injured, damaged and abused by life. So many of the everyday pains of growing and living, I took to heart. My reaction to so much of life was to feel hurt by the inevitable and natural changes that occurred. I was a victim when no one had attacked.

I had a recurring dream as a child. On a regular basis it would come. The story of the dream was: I was falling down a well. I knew it was a long way down. It took a long time to fall to the bottom. Every time I hit the bottom, I died. But I wasn’t scared to die. In the dream, I would be reborn upon impact into a different time and place. Life would be some fairy tale paradise, by virtue of rebirth and erasing the old me. There was no thought in the dream that I had the power to make me and my life more joyful. I had no power. I was a pawn being played by a powerful being. Changing the story of me, was only possible through my own death. The dream repeated for over a decade. It ended in high school, when I pretty much stopped dreaming.

In college, I made a decision on day one to recreate my life and start over. I chose happiness. With this practice and mindset, I realized how much I could love my life, and the dreams changed for four whole years. But before college, and again after graduation it was sad and painful. I had written a story in my head of how life SHOULD be. And when Life didn’t go according to the script, I was hurt. So I was hurt practically all the time. After college, the strength of the story that I should be married and have a family and a summer house and be happy, Damn It, was deep rooted. This inflexible version of me, was thrilled with BIG things in life, but missed the joy in the simple sunrise or steaming cup of tea. The story of Rachel trapped in a powerless existence returned.

The definition above says that a synonym of hurt, is disable. In my mind, I read that being disabled is a way of being hurt. And I think of the quote and translate; I am stronger than what disabled me. I am stronger than stroke. Hmmm. It wasn’t until my stroke that I understood how great my Ability had always been. I experienced Disability for the first time. My stroke damaged, incapacitated and HURT me in ways that I never knew possible; physical, spiritual and emotional.   So much of my body was injured. But as I have said, there was little pain early on. There was deathly silence, within and without. My body was silent. My spirit was abused and traumatized by my stroke, to be sure. And it was not silent. I ran the gammit of emotions from suicidal sorrow to homicidal rage and resentment. My level of hurt that spiritual pain was off the hook.

It was unbearable emotional and spiritual pain, for years after my stroke.   There was no going beyond the hurt. I was stuck in the hurt. The inflexible definitions of life I had before stroke, were shattered. I had no idea how or even that I could live differently. I desperately needed a process, a guide for living and healing up and out of the embarrassment, hurt and scarring inside and out from stroke. I didn’t know at the time, but I was going through the 5 stages of grieving. Grieving is suffering pain and hurt. For me the process of recovery, even the possibility of living without hurt is worth examination of this model. These stages are what I went through with my stroke. They are helpful to me when I get stuck on things like, why the scar from the feeding tube bugged me for so long.

I quote Wikipedia’s article on Kubler-Ross’ stages of grieving.

“The stages, popularly known by the acronym DABDA, include:

Denial – The first reaction is denial. In this stage individuals believe the diagnosis is somehow mistaken, and cling to a false, preferable reality.

Anger – When the individual recognizes that denial cannot continue, they become frustrated, especially at proximate individuals. Certain psychological responses of a person undergoing this phase would be: “Why me? It’s not fair!”; “How can this happen to me?”; ‘”Who is to blame?”; “Why would this happen?”.

Bargaining – The third stage involves the hope that the individual can avoid a cause of grief. Usually, the negotiation for an extended life is made in exchange for a reformed lifestyle. People facing less serious trauma can bargain or seek compromise.

Depression – “I’m so sad, why bother with anything?”; “I’m going to die soon, so what’s the point?”; “I miss my loved one, why go on?”

During the fourth stage, the individual despairs at the recognition of their mortality. In this state, the individual may become silent, refuse visitors and spend much of the time mournful and sullen.

Acceptance – “It’s going to be okay.”; “I can’t fight it, I may as well prepare for it.”

In this last stage, individuals embrace mortality or inevitable future, or that of a loved one, or other tragic event. People dying may precede the survivors in this state, which typically comes with a calm, retrospective view for the individual, and a stable condition of emotions.

Kübler-Ross later expanded her model to include any form of personal loss, such as the death of a loved one, the loss of a job or income, major rejection, the end of a relationship or divorce, drug addiction, incarceration, the onset of a disease or chronic illness, an infertility diagnosis, and even minor losses.”

I went through these stages, in this order, mostly. Stroke physically depressed and silenced many systems in my body. That depression was present in varying degrees since the onset of my stroke. The recognition of my mortality was always terrorizing me, just below the surface.

If I relate the stages of grieving to my hurt, then I have hope. It means that I can go through a process. I can do something, feel better and learn to accept reality. When I am accepting of me as me and life as life, I don’t have to hurt any more. There is room for joy if I deal with the hurt. I have grieved the loss of the Rachel before my stroke. I had to grieve it. It was the biggest loss in my life. I lost me. I have felt that hurt and moved to acceptance. Now I am free to celebrate what I have in life, which is the very best.

Do I hurt? Yup. This stroke survivor lives with pain on a daily basis. Most of us do. But I don’t suffer and my heart doesn’t hurt from my stroke now. I treat my pain on a daily basis. The jaw tightness and throbbing pain really, really, really hurts right now. The tightness wraps around my head like steel bands, tightening in a vice. The congestion is continuous. Breathing is laborious. And sleep? Forget about it.

The fall is turning to winter chill and the cold pain is settling into my right side. It, I mean I ache and it really twinges, jabs, and all around hurts.

I could cry right now as write these words. But I am not going to cry and I am not going to focus on the pain. It is not what I do. (only because I practice every single day.) I’ve heard, “Getting hurt is inevitable, suffering is optional.” I take option A. I take care of myself and focus on the love in my life. There is so much to love in life. I am happy and I don’t consider myself hurt now.

The flip side of the agony I felt in the early years post stroke, was a new clarity about how healthy and whole and able I had been, had always really been. The joy of the simplest things in life had always been mine for the taking but I didn’t see that. Now that is my choice. The day is good when I have a steaming hot cup of tea to warm me. I am happy with that simple gift. It is enough. (It is more than enough.) For me, when I am living life on life’s terms, I am happy. My needs are simple and they are met. My heart is full of love and I am good with that. Stroke changed the reality of me. Of course it did! Who could be unaffected by that level of hurt? Who could sustain life in that level of suffering? Why would I want to? I don’t.

When I could accept the truth, I learned a lesson in embarrassment; at the time I had wasted, the gifts I had squandered, the sunrises that I never celebrated. I think that is why I cherish the little things since my stroke. They are the big things in life. They are not guaranteed for decades to come. I know that. Stroke teaches me that. I have countless gifts today and enjoy them, today. And in today, I am happy. BEEN there, DONE with the HURT. I lived there for so many years and for what? I can choose to be happy for what I have, which is everything. Stroke is the severe task-master teacher I needed to learn to live life right. Some heads are harder to get through to than others. I didn’t understand subtle or gentle lessons. It took a Stroke.   So I am grateful I survived my stroke. I am grateful for my stroke. Stroke teaches me that if I love what I have, I am happy.

scar:

a mark left on the skin or within body tissue where a wound, burn, or sore has not healed completely and fibrous connective tissue has developed.

“a faint scar ran the length of his left cheek”

synonyms:       cicatrix, mark, blemish, disfigurement, discoloration, defacement; 

CHECK. I didn’t have scars on the outside as a kid. My best friend Jordy, had enough for both of us. We were always together. I remember one time, I had done something bad and was sent to my room. Jordy somehow knew and appeared outside my bedroom window, calling to me and pinging my window with stones. I remember looking down at his red cheeks and never neat head of hair. The fiery eyes were looking up at me. He was there to help and had brought a rope. He said he would throw it up and I could tie it to something. Then I could climb down and we’d be free. We didn’t get far into the plan. But he got forever into my heart. Jordy loved me and he was there to save me. (I spent decades after waiting to be saved from myself.) Jordy was forever climbing tall trees, body surfing in the sand pit, and sliding down a three story banister led to regular bloody messes. He was always riding his bike on our gravel road too. And we were always going off to the doctor to get the wounds cleaned out and stitched up. I went with him, for moral support or for the lollipop from the nurse. The scabs barely had a chance to heal when a fresh gash would join the ranks. Scars and scabs are what I remember, and a gold flashing flint in the center of his eyes that mesmerized me and kept me close. He lived life hard. There was fire and rage in his gut, over what I was never quite sure. The flames didn’t scare me. I knew I wasn’t the target of the rage.   But I remember being scared for him, always. He did everything and anything on full tilt. I loved and admired him for that. I envied his passion. For as long as I have memory, Jordy had a scar at the outer corner of each eye, as if a bit of the flint in his eyes were breaking free. I remember that.

Jordy burnt out his candle young. That is the story I have always told myself since he died at age 17. It was a tragic accident on his bike. He used up all his life on this earth in just 17 years. There was no more for him to do here. His energy was so powerful and I spent years waiting for him to rescue me from my scrapes and free me from my punishments. As impossible as that sounds, he did rescue me in a way. Jordy knew Rachel and he loved her. He loved me. And knowing that saved me time and again. For all the years, his is the face I see whenever the word “scar” comes up, the runaway flint from the corner of his eyes. I hope he is resting, not racing now.   His spirit is what I call for when I am tired or disheartened. His passion comes to me and demands that I live life to the fullest. When I am scared he sends his love. His passion tells me to fight when I am weak, to play when I am lazy and love while I have time. I have always been driven to keep going, for him because he had enough drive for his life and mine. I get to do all things that he never got to. I have the gift of growing older, that he never had. Jordy is alive in my heart, fueling me to make the most of every blessed day that I get to be a wife and a mom. His spirit makes me a better teacher, for he is always a child in my mind. In my kids, I see his fire and I want to reach their hearts and heal their pain. (And yes, I want to prevent some scars.) Jordy is with me for my days.

In contrast to Jordy, the only scars I had as a child were internal ones. Life had happened. I didn’t deal well. And so I internalized a spiritual scar; a black mark on my soul so to speak. I felt scarred because my parents got divorced. I worried that I had a broken home. What I really had, was a chance to fall in love with a second hometown when my mom moved to Worcester.   I had the chance to spend summers in England on a narrow boat with my Dad and winters with him and my Jean Granny, Aunt and Uncle in Wessyfoo. I had the chance to meet and love a step-mum who showed me the kind of wife and mom I wanted to be. I had the ultimate gift of seeing both my parents find lives that make them happy and able to share their amazing talents. I got to see my parents happy and fulfilled. Those gifts were as much the reality as my sullen, “poor me” whine. But for so long all I saw was scars.

After my stroke, I had a real “big girl” scar. The round scar on my belly, about the size of a nickel from the feeding tube, bothered me for years. I wasn’t proud of it as a mark meant I had my swallow back and the feeding tube could come out. I wasn’t proud of being strong and beating my stroke.   I was ashamed of the discoloration in the center of the scar. I was disfigured by the scar.

I hated the scar on me. It was a constant real reminder that I had a stroke. I wanted to deny the stroke. But there was no denying that scar. I was angry and hadn’t accepted the way stroke snuck in and caught me off guard. In that second of my stroke, I was vulnerable and mortal and totally insignificant. I felt powerless. I hadn’t accepted the reality of life on life’s terms as a gift of my stroke. I wasn’t there yet.

But there was healing going on the with the inner scars in a way that would lead me to that acceptance. Tattoos were that way. Yup. This survivor gets some healing through ink. I had gotten my first tattoo when I was 28 years old. My fab Cape Cod Cuzzin was getting inked at the time.   We would talk about the realities of being tattooed. Ink was for life. So you had to find a place on your body that could be easily hidden, if needed for professional reasons, and would never sag. The tattoo had to be meaningful and no words! These were our conditions. Absolutely sensible at the time.

I loved my Cuzzin’s pride and self assurance from her tattoos. Her smile was bigger and there was a twinkle in her eye.   I wanted that feeling. And they were pretty. I wanted to be pretty. So I did what she did. Tattoos were still illegal in Massachusetts, so I went to Providence. In Peterson’s Guide to Wildflowers, there was the drawing of the romantic Forget-Me-Not. I wanted that wistful, wild essence for myself. I took that picture to the artist and within an hour, the round blue flower with the yellow centers grew out of the side of my right foot. I admit, it hurt like hell from the second he put the needle to my skin. But at that second, some ink was laid down, forever. If I stopped then, I remember thinking, I would have a scar of ink, unfinished work, and major embarrassment over not completing the tattoo. So I stuck it out. It hurt less and less each minute that went by. I thought that maybe my foot was going numb and my mind was getting stronger. I wanted the result. I wanted the pride and pretty picture. I got it. And it did help me then to feel a little bit prettier and stronger.

Before I could dream up and plan for a second tattoo, along came my stroke and it took over. So many scars, inside and out came from my stroke. I could not imagine feeling pretty or strong. I have previously referred to the darkest days as those when I was Jabba the Hutt: nothing pretty about this image. The character is practically a diseased scar, animated and brought to life. Nothing pretty there. No thought of healing. I never had the idea to adorn myself or celebrate life. Not then. I was not in the practice of taking small steps forward, living life simply, working really hard on things that SHOULD be easy and accepting help to do it. Stroke survival demands these skills or else… or else you can’t heal. I fought it tooth and nail for so long. I did work really hard, really, really hard. I did accept help, a lot of great help. And that cooperation fed the beginnings of my journey to the life I love now. Once I was able to take small steps forward, instead of attempting leaps forward and then running back in terror and shame, life got better. Once I began to live life simply and appreciate the journey, I got better.

When I started really moving down the path of acceptance and living life on life’s terms, my Cuzzin reminded me of the tattoos. I needed something pretty on me. Something pretty and strong. I was making peace with my new life path and I needed a tattoo that reflected the journey. My second tattoo would go above my heart. That location could be concealed when I was teaching and on someone with my build, it was never going to sag. My mom had got me a necklace with small, silver, scallop shell on it. She told me that the scallop was the symbol of pilgrims, on their journey. That was me. I designed a scallop set in the curl of an ocean wave. Perfect. The shell alone, was just floating there. The wave was the anchor: shell for the pilgrim, wave for the strength. Cuzzin found a studio of female tattoo artists. Perfect again. I wanted the experience to match the spirit of the ink. I needed to be reminded and embrace that I was a young, vibrant woman. For so long I had been the sick sexless lump.

It was October of 2006 and Lola and I were visiting her, enjoying ocean and sand and family. Cuzzin, her friend and I went together on a Friday night to downtown Falmouth. We all got tattooed that night, together. As the ink went in, I told my story. The artist and family and women in the room smiled at me. They praised my fire and strength and what I had endured. I felt so good. I remember being proud of myself for being a stroke survivor. I remember being happy with those women. I remember I went from sick, pitiful, stroke victim to proud, beautiful survivor that night.

On January 21st 2009, I got my biggest scar, ever! I didn’t even list it as one of my scars until a couple of months ago. I was talking with two friends of mine. Both of these men have lots and lots of ink. I am always curious about the stories behind the tattoo. I don’t go up to random folks and ask. But with my friends, I do. One said that several years ago, he had heart surgery. And afterwards, he had asked his tattoo artist to turn his big chest scar into a zipper tattoo. It couldn’t be done. I knew that too. They won’t do it. I forget why. Doesn’t matter. His tattoos showed his love of music and rhythm. They fit his personality.

I said how I had been getting tattoos to help me heal scars. My other friend laughed and said if he did that, there wouldn’t be a spot on him without ink. He had scars from all kinds of fights and scuffles. Life had left its’ mark on him. Much of the ink I could see showed love of his God and homeland. His ink matches his spirit too. When he talked about not having anything left if he tattooed all scars, I got to thinking. And I realized that I had a very big scar from where Jason was born. He was a C-section baby. No doctor would have this stroke survivor push and risk another stroke. So I have a big scar that I never think about. When I got that scar, I also got Jason. Tim, Jason and I became a family. I got so much FROM that scar and never had a negative association. When I think of that time in my life, my thoughts are of Jason and Tim, not myself. I got to be a Mom because of that scar. I guess I am kind of grateful for that scar and always have been. So that scar didn’t go on the list. Now I realize there are scars that make us, at least me, happy from the get go. Sometimes there is no hurt connected to the wound that leaves a mark. For me, hurt and shame were the requirements for a scar to make the list. In that recent chat with my inked friends, I learned something new about me and how I work. That is so cool.

It was all about Jason for several years. I had this life I never thought possible, a husband and child. They were here. And they were everything, especially Jason. Babies are everything and then some. I was blessed. I had decades of life that were all about me. So I didn’t begrudge it being all about him. There is something that I’ve said about a million times: “No child asks to be here. When they arrive, we owe them the best.” I think it’s one of my truths. (Ya know, things you totally live by, could be a bumper sticker, and you are not always aware of!) I know that Tim and I both did the best we could. I know that our ability was much greater when we had Jason, than it had been earlier in our lives. So tattoos were definitely on the back burner again. The immediacy and total absorption of JASON were so worth it. When you get what you always wanted, better enjoy it. Stroke taught me that. What a gift.

Good friends have taught me another great thing. I am learning that when I am truly ready to face my wounds and hurts, I can and will find healing. I do not have to bear the load forever. I don’t have to push the healing. I can’t be ready and willing, on demand to face demons from my past or hardships that I have endured. Ok, Rachel. Enough pussy-footing around. There is a big truth about me that I haven’t said.

  1. Here is the truth. I believe in God. (I am not sure I did, for a long long time. After my stroke I found that I did believe because I hated God. I hated God for not killing me with the stroke. I hated God because I was still alive but was so different. I screamed at God who would do this to me. One day in my journey, the question went from “why me?” to “Why not me?” And “Why did I have my stroke where I would get such FAST great lifesaving care? And what was I meant to do with this precious life I had been gifted?” This change of thinking changed everything for me. And I did not make this change happen. I made space in me for this change to move in. If I did not do this, then something greater than me had done it. And I was the better for it. So that was it. I called it God and moved on with living.) So There, I said it. It’s not a complicated thing for me. Life is cuckoo. My God is love. I live better when I rely on that. That’s it.

My journey before, during and after my stroke shows me that there is something bigger than me at work which supports, inspires and connects me to Love. My job in life is to follow the Love. (Sugar is love, right? So baking is following the Love, Right?) I do the next right thing. That’s it. Over the years, this simple practice has made me happy and content. I have a relationship with my Goddog where I don’t have to be the leader. Stroke has taught me I am not running the show. I am just not that important. What a relief to know I never had all that power to begin with. I can be a good worker today. My work is simple. I can do the next loving thing to help others. Even I can figure out what that is. It’s simple and It works for me. Ok?

Anyway, what I have found is that my God doesn’t bring stuff to me until I am ready to handle it. Practically speaking, that means that whatever happens to me today, I will be ok! I gotta practice this faithful and accepting version of Rachel, everyday. I blame the stroke for killing brain cells. I seem to need a daily practice and reminders that I am not in charge and that is a good thing. I wake up and with my first cup of coffee, standing at the kitchen counter, looking out the window for first light and morning birds, I ask the same question; what am I supposed to do today? Who can I help? I ask and get answers. Sure enough, by tea time, I am thinking I got answers for everybody on every topic imaginable. And so I have, I restart my day. I tell my kids that. I restart my day whenever I need to. My Buddhist Reiki Master Nancy used to tell me that she allowed herself 5 fu**ups a day, before she’d get upset with herself. She was human and needed to remind herself to be gentle.

Every day, whatever happens, I will find some way to handle it. And almost always I get lots and lots and lots of help from my friends. Didn’t the Beatles come up with that idea? https://www.youtube.com/watch?v=W-uTocAlIyw Who can argue with that? Not me. When hurt inside me, comes up and wants to come out, I freak. And pretty soon after, I remember that I will be able to deal with what ever it is. I remember it is just me, making peace with me and that if I clear out the old crap, there will be room for more life. I love that. So I have to practice and pray and listen and talk to find out what is going on with Rachel. And then I have to practice and pray and listen and talk and do the work to be healthier. It hurts. I hurt. I know it is growing pains and I take comfort in the image of the Grinch at the end where he cries to his Goddog Max, “I’m feeling” as he is writhing on the ground with his heart growing 3x the size in one day. His Goddog is there for him. Mine is there for me. And I am always the better for walking through the hurt.

The third tattoo was all about the wait. I was happily living on life’s terms with my family, that I got because of who I became after my stroke. I knew that. But on the inside, I was waiting. I was waiting for me to be ready to deal with one of my Stroke Demons. This time it was the external scar, on my belly from the PEG tube. I felt ugly because of this scar.   It is not like I was in the habit of baring my belly for anyone to see. My days of the two piece bathing suit were passed, stroke scar or not. It wasn’t the size or shape or placement of that scar.

I think I hated it, was ashamed of it and saw it as disfiguring, because of fear. Yup, that sounds right. And that fear which comes out in me as pain, was so great, it took years to get ready to face it. My Buddhist Reiki Master Nancy had taught me, that if I really touch the pain, it will disappear. If I am ready and I really face it, in that instant it will lose all its power. And I believed her. I had seen it and knew it was true. But I hadn’t been ready for that face-to-gut encounter. I was terrified of what that scar represented to me; total and complete powerlessness, my mortality.

Stroke came and took my swallow without warning. For me, that took my humanity. I couldn’t do the basest human function, swallowing my own spit. I couldn’t be a part of the basic family routine, sharing a meal. One second I could and the next I couldn’t. One second I was a young teacher of children. The next second the tables turned on me. I was the student of hospital, ER and nursing home routines, the lifesaving suction machine, fluid IV drip, feeding tube and pump, DPNS therapy, medication scheduling, and countless other new things I had to learn to survive. One moment I was running the show and the next, I was a victim. Once I was the invincible, immortal young fool. The next moment I was near death (my own death) , a crone without the wisdom and grace of years of life and strife.   I was at the mercy of modern medicine and whim of the location of this STROKE, to survive. Once I was me and then, who was I?   The truth of dying had always been there. We know that is the reality of our existence. I had heard about death my whole life. I had lost people that I loved. Gramma Harriet had died and I had been ok. This was different. I wasn’t ready. I hadn’t done the things that we are “supposed” to do, yet. I wasn’t married. I had no children. I hadn’t really made anything yet. I hadn’t gotten up to my prime yet. Isn’t the prime time for a woman, when she is in her forties? I wasn’t in my Golden Years where you accepted that you had lived life, were winding down and would decline until you die. You would have made something of your life and people would remember you, the way I remembered Gramma Harriet. These were the stories I believed about life. And I hadn’t arrived at the acceptable end of life. I was 30 years and I wasn’t memorable.

At 10:10am on April 4th, 2003, my stroke erased those stories, forever. I was going to die. Life was not measured by my standards and I wasn’t following the socially appropriate story. It was going to happen whenever my time was up, and that wasn’t going to be my call. The sequence of life wasn’t in my time or my design. I wasn’t guaranteed time to do things. My reaction was fear, panic, and depression. I couldn’t handle the not knowing. I had little peace.

My second tattoo of the scallop shell set in the wave, was a step on the road to peace and acceptance of reality. It was a sign for me that I was living life on life’s terms. The daily practice of this brought me to a time in 2012 where I was ready to really touch the pain and face that Stroke Demon. I was ready for it to go away and leave me. And the way I did it was through my third tattoo.

I went down to stay with my Cape Cod Cuzzin again. Only this time, I went solo. I went away for a night, on a sort of retreat. My Cuzzin, the ocean and the ink were the spiritual medicine I craved. The air was cold, and my Cuzzin’s kale and linguisa soup was hot and spicy. She is one of those cooks that food wants to come home with. Ingredients end up in their yummiest form and they know it. I know it. I don’t know what she does in the kitchen, but the results are magical and healing. Something absolutely delicious is always there when I come to visit. This visit was no exception. The studio with the female artists in Falmouth had closed in the six years since my last tattoo. Cuzzin had a found a new studio in Hyannis.   I had never been away from Jason, who was now 2 and a half. I never felt the need. But I needed to make peace with the PEG tube scar. I needed to smile when I looked at it or talked about it. I wanted other folks to smile at it too. How do you get others to smile about stroke? For me, the punchline of that joke centered on the scar. The tattoo would center around the scar. The scar was to feed me so I wanted a food tattoo. If life is sweet, then the food item had to be a sweet treat. I picked the classic New England icon of the chocolate chip cookie. The new studio was called Spilt Milk. And what goes better with milk, than a chocolate chip cookie? Yes, I asked. And I was the first cookie tattoo they ever did, even with a name like that. I was unique. Once I found out that the cookie couldn’t be tattooed onto the actual scar, the artist helped me with the next step. My tattoo would be a cookie with a bit taken out of it. The bite would be the scar. We would have crumbs escaping from the bite. Fabulous. And if I ever needed the feeding tube again, the doctors would know right where to put it, the cookie marks the spot.

2-cookie-tat

When I saw the cookie whimsically set around the scar, I smiled. That was all I needed. See, sugar really does make me happy. It really has healing powers. Equally significant is when I showed the tattoo and spoke the words that IF I needed the feeding tube again, the cookie showed the way, I had spoken the truth of my own powerlessness and mortality. I had made it funny and sweet. But I accepted it. The hurt and the scar are gone. Baked goodies and a sweet smile are there in its’ place.

(SIDE BAR: I HAVE BEEN WRITING FOR 1.5 HOURS THIS MORNING. IT IS WORLD STROKE DAY. A STROKE HAPPENS EVERY TWO SECONDS. WHILE I WROTE 2,700 STROKES HAVE HAPPENED. JUST SAYING)

My 4th, and so far last, helped heal another internal scar. (Plus it satisfied my craving. I am totally hooked on ink. I own it.) I survived a brain stem stroke, thanks the FAST help I got, great medical care and a dash of my own stubborn grit, I hope. I thrive because of the lessons my stroke teaches me about how to live life on life’s terms, not Rachel’s. The location of my stroke in my brain was the source of this scar. The brain stem controls all kinds of automatic human functions like breathing and swallowing and such. Pretty important stuff. It is located at the base of the brain, top of the spinal stuff. On the outside, if you put your hand on the back of your neck and find the hairline, deep under there is your brain stem. The whiplash injury from a hit and run car accident years before contributed to my stroke. That snapping back and forth like a rag doll action is not so good for ya.

After my stroke, the doctors made it clear that activities like amusement part rides were out of the question. I cried for days. NOT!!!! I was not a fan before my stroke. This was no loss to me. They said it was not recommended that I have chiropractic manipulation on my neck again. I had been going regularly to a chiropractor since the whiplash injury. It had helped a lot, until it didn’t. The day before my stroke, when I was having those mind-blowing headaches, I went for an adjustment. There is some research now is not so favorable about chiropractic manipulation on the neck. I don’t know. I am not a doctor. But I do know that I am not taking the chance. No more chiropractic for me, anywhere. There are so many other avenues to health that I can look to. And honestly, I haven’t felt the need for it at all since.

The doctors said that I should not paint ceilings again as the sustained tipping back of my head was not the greatest for me. The artery was widening and healing, but why push it? Fine by me. All these years later, I am not sure whether it would be fine for me now. Did they mean not then and I just made it a habit for always? Not sure. Anyway, I was hyperconscious, neurotic and freakishly sensitive about my neck. For the first couple of years, I wouldn’t tip my head back at all. I was afraid, and for good reason. I adjusted every activity to keep my head straight forward or down. It would have been nice to see the flock of geese fly south for the winter as Mom and Cuzzin did, but not important enough to tilt back this head. If I was changing a lightbulb on the ceiling, I got on a stool and reached up. I felt my way through the chore. It worked. As time went on, years went by I loosened up a bit. I relaxed into my own new body and saw the birds fly south. But when someone wanted to touch my neck, put their hands on my neck, anything, I freaked. My goddaughter hugging me was the best thing, but not when she put her arms around my neck. I was terrified that the pressure would damage the artery and I’d stroke out. Irrational, but real to me. My aunt would try to massage me a bit. I craved the touch, but rejected it totally. Tim would gently put his loving hand behind my head. I loved him so but feared stroke more. Irrationality is now really interfering in healthy living.

My Buddhist Reiki Master, Nancy helped me so much. She didn’t wait until I was ready to face the terror. She helped along the readiness. Nancy got me into Reiki as a way of helping me integrate the two sides of my body. With her energy, hands-on I could feel heat and pain on the right side. We met every week. She came with a coffee for us and while Jason napped, she helped me. She healed me with her touch and showed me I had that power within myself. She attuned me to Level 2 in Reiki.   What a gift! I had faith in Nancy and trusted the results I was getting from Reiki. Touching my neck was part of the work and I accepted it. She knew my fears. She felt my energy. The scar was there but she just moved the energy around and through it. She touched the back of my neck a lot and over time, I believe the brain stem just became a part of me, not a red flagged DANGER zone.

But it was still a scar that needed something. And then Nancy died so suddenly from an aneurysm. We had met just the day before. She brought hazelnut coffee to try this time. That was a new flavor for her. We chatted for a long time after we did some Reiki. I was going through some growing pains and she was the best help. I remember we sat in the kitchen and I brought up so many more things than usual to get her help with. The next day, I was baking after school. I remember it was cinnamon swirl banana bread. Nancy was at Toys-R-Us for the first time in her life. Jason’s birthday was a few weeks away and Nancy was on a mission. She adored him and showered on him, all the love and toys and hugs and smiles that her childhood had not have. And that was saying it mildly. So Nancy made a pilgrimage to a place she had never been. She called me 3 times from inside Toys-R-Us. “Did I know there were three different kinds of tracks for Thomas the Tank Engine? Could Tim redo the attic and make space for a whole train railway to be set up without having to take it down and destroy it every time he played? Did I know how many different trains there were?”   She was the proverbial kid in a candy shop. I giggled and went back to my bananas.

The fourth time the phone rang, it was not Nancy. It was a man on her phone saying that Nancy had said “call Rachel,” and had collapsed. By the time I found out where she was, finally reached out to Jennifer to come sit with me at the hospital and got to my hospital, she was gone. Machines were keeping her alive but there was no coming back. Nancy’s heart was beating but she was not there. She had done everything she was meant to do in this life. A few weeks before her death, she was chatting with a wise friend. Nancy told her that she felt her time was soon and she was not scared about it. She said it matter-of-fact like and without sadness. So now her spirit was free and her demons healed. She had peace. Nancy had fun in the toy store and there was certainly joy in her final moments. There had been nothing left unsaid between us. Love was given and love was received, always. And anytime I did Reiki, I would always feel her energy. That wouldn’t change. That night in the hospital I held her hand and did the right things for her. I held Jennifer’s hand too, even though she wasn’t touchy feely, she let me. Thank God she was there with me. At the end of a couple days, after 27 different parts of her were taken to help other people, we let her go.

Without her I stopped practicing the Reiki. My heart was scarred from losing her and I withheld Reiki from myself as part of my grieving. Knowing it would help me and that I could have healing even when she was dead, meant to me that I shouldn’t do it for a time. Does that make sense to anyone other than me? I had this scar in my heart now from loving and losing her. I had survived again. It wasn’t my time and I was grateful, but I felt guilty.

The forth tattoo helped heal the scar on my heart and my brainstem too. A year after the cookie, I got the next tattoo. I no longer followed the original rules Cuzzin and I had made. My tattoos don’t have to be hidden anymore. They are for me and I am way beyond that. I think it is one of those privileges of getting older. And I am grateful. I care less what others think of me. I care more of what I think of me.   I wanted this one to be seen.   And where I wanted it, I couldn’t see it without a mirror. I wanted the tattoo on the back of my neck, over my brainstem. And I wanted another flower. My first tattoo was the Forget-Me-Not. In the years since that tattoo, my aunt had planted the flowers at Wessyfoo. And they spread. I mean they really spread, multiplying by the hundreds, growing a foot tall and covering the whole side yard right up to the kitchen window. Powerful and increasing in strength were the Forget-Me-Nots. Before the blue masses came the delicate lacy, Bleeding Hearts. Perfect for me. Rose tattoos are very popular and they are a flower and I do have the great love of Red Rose Pizzeria. But not this time. Not that flower for that location. Hearts are the symbol of the American Heart and Stroke Association. I wanted some of that power on me. But I didn’t want their heart logo. I wanted a flower. A bleeding heart tattoo over where I had my stroke, and bled out from my brain stem. Now that was the tattoo for me. It was just right.

I went back to Spilt Milk with my design. Tim had a job to do at a client’s house in Hyannis. It was right on the harbor and Jason and I could watch the boats and collect shells while he worked. Ferries and party boats made a constant parade. We had found big conch shells abandoned under the dock. The mussel, clam and scallop shells were treasures to find. The sun shone down on us, the ocean spread in front of us and a yard of beach roses was behind. But not today. Today my Cuzzin met me at the studio. She took Jason and went off to the arcade and carousel and candy shop. Sweet. I went in and got inked. I was alone this time and yet totally did not feel alone. My family was near and Nancy and all my angels were nearer still. Jean Granny was there too. A flower from her yard would grow forever on me. I like that. I worked with the same artist. This time, he went a bit bigger in scale. I could see him itching to do it. Tiny tattoos lost impact. This ink meant so much to me. And the artist was proud of his work. This tattoo would be seen where the cookie was hidden. It had to be right. So bigger it got. That was scary. Scarier was lying face down while he worked. I was afraid of the needle on the back of my neck, but breathed and did Reiki right through the fear. I was afraid that I wouldn’t be able to breathe well enough and my nose would drip too much if I was face down. Would I be able be in that defenseless face down position for as long as he needed to work?

3-tattoo-heart

I did and I am glad I did. I wonder when I’ll get my next tattoo. I know what it will be and where; holly berries and leaves on the inside of my wrist. I have a story surrounding that tattoo. It is a good one. There is no scar in the story. But there is a new rule. I am waiting for the fifth tattoo until I can go with my Cuzzin.   The tattoo itself, combined with the tradition and time spent with my Cuzzin, makes a plan put into action that heals me. When it is the right time, the pain in the scars is replaced by joy of the journey.

October 2003

9/30 11mg   9am Physical therapy. worked on skipping? Really. He asked me to skip. I pulled a face. He told me to skip. For the life of me I couldn’t. He said that my body memory had forgotten the sequence of skipping. I said, “who cares?” His answer was that it was part of retraining my body and mind. OK. I am wondering how downtown and the other leaders feel about the letter from my friend and the union. They should have it now. I don’t want to upset them further. I need help.

10/1 11mg Rent is due. I have to go pick up Paxil at the pharmacy. Why? It doesn’t help. 9:30am I have a hair cut. Why? No one cares what I look like? Dr. K says that I can’t lean my head back onto that bowl thingy at the hair dressers. The surface is cold and hard and could do damage. So I don’t. I have to sit on the chair facing the sink thingy. I put my head into the sink, he washes it while my bum faces the salon for all to see. Flattering view. Not. But I do it because Dr. K says I should and I admit that I do feel a bit more human with a fresh hair cut.

10/2 11mg. Blood work at my Doctor’s office. The girls there are so nice. They know me now. Maybe I will bake muffins for them. I sound like Gramma Harriet. I have P.T. at 9:00. Skipping again. Really? I can get one leg and arm going but then just sort of hop with the other. No rhythm. I have the mouth of a truck driver. He has the patience of a saint. We also do work on the big exercise ball. Balance again. I don’t have much.

10/3 11 mg. It is Friday and I got a letter from Them that control my health. They thank me for bringing the grievance. Yeah right. Then they quote the page in the handbook that says that I only get 20 visits per year on physical therapy. Thank you so much, I didn’t know that! NOT! They said “my concern would be brought to the ….Health Plans Benefit and Technology Committee for review. This Committee reviews recommendations from our members and will update any changes to the…benefits as needed.” I have no idea what they are talking about. I think it is babble but hope that someday I might get more help. THEY have told me that I am “one in a million.” What happened to me doesn’t happen. They don’t know what to do with me. I guess I mess up their statistics. I don’t want brain surgery. I just want a hand getting better.

10/4 11 mg I ordered an album called “Simply the Blues.” I am into the blues right now. I think the theme at Thanksgiving will be “the Blues.” I am definitely doing Thanksgiving this year. I will not take a year off. I have no job. This holiday is mine and I will do the work.

10/5 Deb is coming up for the day. Yeah! We are going with Mom and Lola up to get the pumpkins at Howe’s. Lola gets to come. I need her.

10/6 I cancelled my appointment with the psychiatrist. The Paxil doesn’t work and I have nothing to say. I have an MRI at 10 am. The CD player is on the fritz, again. I do my a-z rhymes in my head and make it through. It was cold in there and I am already cold. Just saying.

10/7 11 mg 9:00am PT with Glenn again. I skipped in the correct sequence for 4 strides. Not much, but I did it. We used the hallway for practice. I almost clocked another patient coming out of a room. I have to pick up papers downtown about an extension in my sick leave. Pay bills and go to Rocky’s for birdseed.

10/8 11 mg Call Dr. S and Carole. I need help. Mail car insurance. I found a number to call that might give me information on ways to get myself more rehab services. At least I might find out how other states or the feds look at this issue. I reached out and called the National Stroke Association help line. There was a wicked long wait on the phone. When a human finally answer they said that due to funding, they were under staffed. They referred me to a branch office in Miami? I left a message and someone will call back. Not very encouraging to hear about understaffing at the national level. At 1:15pm I called the American Heart Association in New York. I know my speech stinks right now. But if I sound too icky or someone can’t understand me, I’ll just hang up. I need help. I spoke to a man named Eric. He was very helpful. He said that the issue is larger than just the HMO. He said that I had rights. He told me to reach out to Senator Kennedy. That’s so funny because Gramma Harriet always said what a champion he was for the rights and services of health care for the elderly. Here I am being like her again. Eric told me to start looking things up in the Medical Journals. He also gave me contact information for Lisa. She had a stroke when she was in college. She is from Rhode Island and I should reach out. I sent her an email at 4:30pm.

10/9 11mg. I have to go for Blood work today. This time I do bring muffins. I really appreciate that they use the paper tape over the gauze after the blood draw. The heavy vinyl tape kills me, even on the right side. My skin seems thinner these days. Just like Gramma Harriet again. I ask Dr. S for a speech referral after I get the blood drawn. I need it. I hope I get it. I am slurring really bad. Attractive! Not!

10/10 INR was 1.4. That’s a bit low meaning the blood is a bit too thick. Dose of Coumadin upped to 12 mg.   9:00am I have PT with Glenn. Get ready world! The skipper is here. Yup. I did it. I smiled and cheered like Rocky when he is at the top of the stairs. Glenn cheered too. I did good.

10/11 and 10/12 12 mg. It’s the weekend and I got nothing. I am too tired and slur so bad when I talk. I am taking the babies to bed.

10/13 12 mg. The car needs brake work. I take it. I don’t have to say a word to anyone and no one stares. Good.   I did go to a meeting at my union building because my big friend who is helping asked me to: City’s Insurance Advisory Committee. My union friend asked me to speak about the system of care for stroke. It was a good thing. I was scared but I did it. There were a lot of people there from different areas of the city. Two reps from THEM were at the meeting. They knew me. I knew them. But they would not look at me, speak to me, or in any way acknowledge that I existed. I couldn’t believe it. I was talking about their company and they acted like I was talking about Disney!

10/14 12 mg. I have 8:00 physical therapy with Linda. We do a lot of work on the ball for balance. I drool too much. What a hot mess. At 10:00 am I see Dr. K about the MRI. My blood pressure in his office was 120/70 which was very good. Ever since the stroke, it spikes in any doctor’s office. I wonder why? NOT. Dr. K said that the artery is still slightly narrow. He told me to stay on the Coumadin for another 3 months. I had thought I might be able to switch to aspirin when I was sixth months out. I guess not. He said he will check again in January. He said that I am doing well. He said that the stroke will NOT REOCCUR. He said it will not affect my life span. He said to keep up the Physical Therapy and get into normal living. I will keep improving, he said. I heard him. But what does that mean to me? What is normal living? I stopped by the Speech suite after Dr. K., Carole’s office manager, said that he got a script for speech from Dr. S. I have an appointment with Carole!!! I am so excited. I saw Carole in the hall. I gave her a hug and we chatted. She made a point to telling me that I did not have the slur when I was discharged from her. This was new and we will make it better. I have questions so I go into the medical library and begin google search in medical journals about myself. I print 2 articles and add them to the binder.

10/15   12 mg 8:30 am Glenn for P.T. I want to show off my skipping prowess. He says we need to work on the home exercises. I sulk and whine about being tired. He says I can skip if I give some effort to learning the home routine. He won! I really love his encouragement.   At home, I sat down and wrote a letter to Member Relations of THEM.   I told them about the meeting. “I spoke about my experiences with the HMO regarding my care as a stroke survivor. I spoke about the excellent care provided to me by medical professionals associated with…THEM…. I spoke about difficulties in coordinating my health care due to benefit limits. I voiced appreciation for all the care….” I went on to describe and name those reps and describe their behavior. I deserve better. I want to keep the lines of communication open and include me in that line, because that is my JOB right now. I am my JOB!

10/16 Blood work results show the INR at 2.4 which is really good. 12mg. I am starting occupational therapy for my hands and writing. Right now, I am 10 times worse than my students ever were. I scheduled OT for 12:30 pm and then I have Glen for PT at 1:15 pm. I am exhausted . I got an email back from Lisa. She told me a bit of her story; 3 strokes with the first at age 21. She works for the AHA and says it is great to hear from Survivors.   She said that my story can be an inspiration and I could truly make a difference. “You are a fighter and an inspiration,” she wrote to me about me! She asked me to join their grass roots campaign and I would get information regularly and there would be things I could do. I printed the email.

10/17 12mg. I get paid today and pay it all out in bills.

10/18 12 mg. Today is the Worcester County American Heart Walk.image-_4

I am going to go and see. I have Lola. It will be ok. The registration is at 9am and the walk is at 10:00. It takes a while to find parking. Everyone is walking towards the bandstand in Institute Park. It is so strange. I grew up across the pond in the brick apartments. Mom still lives there. But right now, that seems like a different life, not mine. Everyone has envelopes of money they are turning in. This walk is a fundraiser for the AHA. But I have nothing to give. There is a booth for Survivors and I walk over. It is not crowded. I tell them that I am a stroke survivor and they give me a red cap and tell me to head over to where the walk will start. That was it. I don’t know anyone. My team is me and Lola. We walk over to where the walk will start and at 10:00am, we move. There are three different distances you can go. Lola and I are just doing the mile. I start walking. Lola is next to me. People are all around me, but we are all alone. I feel pretty pathetic and invisible. Out of nowhere, someone is walking next to me. I don’t know where he came from. I turn and look and then I trip. It’s the Mayor. He is walking with me! Me! He comments on Lola and asks me about my red hat. I talk for a minute and then I can’t anymore. Walking and talking just don’t mix. Fortunately, he is a charismatic chatter who starts telling funny stories of his weekend and things going on in the city. He chats and I get to walk with him and try to breathe. He keeps going for the longer distance. Lola and I say thank you to him for the very nice chat and we turn right. As I round the corner, I take off the red cap and put it in my back pack. Very few walkers are doing the short distance. We are heading back into the park, alone again. Lola is tired. But so am I. I tell her I can’t carry her today, but that we are almost done. We walk back and get into the car. No one notices. But we did it. We know it. I love when Lola winks at me. It makes me smile.

10/19 12 mg. It is Sunday and I am going to church. People look at me and give me looks of sympathy. But Farmer Ken is there. It’s worth it.

10/20 12 mg I GET TO SEE CAROLE! At 9:00 am I have to go and get a full evaluation for insurance purposes and to see what’s going on with me. But I will get to see Carole again and I know she helps. I have to go food shopping and go 4 legged kibble shopping too.

10/21 12 mg I have Carole from 11-12 downtown at my hospital. There is work to be done. I start crying when I start talking and I start slurring. It is so humiliating. Why is this happening now? Why me? Why now? She gets me back on track with a hug and a tissue. And we get to work.   Then at 12:45 pm I have OT across town, followed by Glenn at 1:30 pm. I bring blueberry muffins to all. Just like Gramma Harriet.

10/22 12 mg. Today I have Carole at my hospital from 11-12 and then across town to have PT at 1:15 pm.

10/23 INR at 2.3. It is great it has been more stable. So I stay at 12mg. Today is a special trip. I am going with Mom and her friend to Pickity Place. It is a beautiful place to go for lunch. They are nice to take me. I feel like Gramma Harriet being take out for the day by the young folks. I am tired and don’t want to speak for the slur. I look at the scenery a lot. But I don’t say any of this to them. They are nice to do this.

10/24 12mg   I have OT at 1:00pm. She gives me some good exercises for strengthening my hands. I write using a grip on my pencil, just like my first graders. Some role model.   I got a letter from at Account Manager with THEM today. They clearly outlined that they didn’t see the behavior of the two reps as I did. But he did offer apologies. “Having heard your presentation we left with the highest level of respect for you and great appreciation of your situation.” (I don’t want to be appreciated, I want help, to HEAL!!!) He cited the new HIPAA regulations make it difficult to talk about members in public. (these new regulations seem to protect THEM from ever have to be accountable for their crummy policies. There is never a right time to deal with them about me.) He said “You raised some very good points relative to benefit limits and, based on your presentation, I have submitted a suggestion to our Medical Director and other members of the leadership team asking for a review of the physical therapy benefit. [THEY] will contact you if [THEY} make a change to this benefit.” I see a magic wand being waved above my file. Maybe I’ll get some more visits. Maybe not. Why did they save me?

10/25 and 10/26 12 mg. It’s the weekend. I hate the weekends. They are lonely and I can’t do my work. I go on Sunday to the Unicef Carnival at Church. It is for the kids, for Halloween. I used to love it when I was in high school. It is good to go. I definitely feel like the Gramma going to church to watch the “young uns.” I am a “watcher” now, while others do.

10/27 12 mg   I have Carole at 9:00 am. The car needs an oil change and I take care of it early. My car is my freedom. Gotta keep it in good shape. I really sound like Gramma Harriet.

10/28   12 mg.   I have OT at 8:00 am and Carole at 10:00 am. Good to be back at work.

10/29 12 mg. OT at 9:30 am. I am not getting better with the hand strength. After a minute, my hand just gives out. I am doing all the exercises. But I have none, zero stamina. This sucks. My handwriting looks like a preschoolers. It’s embarrassing. This fun is followed by Glenn for PT at 10:00 am and I work the core hard again. I only fall off the ball once. I guess that is improvement. But I drool through half a box of tissues during the work out. Gross.   At home, I got a letter saying that I got some extra time paid on my leave but that it expires on 10/31. I need to submit for additional time. They enclosed a new form for Dr. S.

10/30 12 mg.     10:00 am Carole down at my hospital. At noon I meet Mom at the Art Museum. Pick up new papers at Dr. S.

10/31 12 mg. I get paid today. Good to have money for bills. Glenn for PT at 10:30 and then OT at 11:15. I head downtown with the new papers for more time. My time was up. Now I have got more time.

October 2016

I love October. It gets cooler and drier and I can bake like I want to bake. Pumpkin and apples abound. This year, the weather is hot and humid for much of the month. I drool and wheeze and wait longer to take the air conditioners out. But Jason is in his glory. He wears shorts to school everyday. I leave for school at 6:45ish. He is usually up and starting on “breakus” by then. (That is my childhood term for breakfast, back in use.) This year, our big second grader picks out his own ensemble. The clothes are clean and the choice is his. I get the big reveal when our days are done. I get out of my school and drive over to pick him up from his school. Picking him up is one of my favorite things. The schedule works out that I am out before him. I love that I get to do this. We wait outside the black iron fence in front of the school. There is a minute to chat and decide ahead of time whether or not we are heading to the park around the corner after school, or not. I’ve gotten to know the families of our school. I like that. It’s The real deal neighborhood school.   When we were looking to buy a two family, it had to be here. I wanted this school. I had a picture in my mind of kids walking to school and families playing in the park and kid’s growing up together. That picture is the reality of everyday as I pick up my son at school.

The bell rings inside the old brick school house, the doors open and kindergarten comes out first. I am still surprised he is not in that line of little ones.   Next come the sturdier first graders, and he is not there either. Finally the strutting second grade comes out. He comes out in a line of kids behind his teacher. I always find him, but not by his outfit, because I haven’t seen it yet. I wave at his teacher, she waves back and pats Jason’s shoulder. She let’s him go. He runs full tilt across the school yard, out the gate and then I’ve got him. What a gift. And this month, the lad running to me is sporting shorts. He bounds out of school, always smiling. I love it. I love him. I’d love to have his energy.

Other years, by October I am settled into the routine, getting in a groove and hitting my stride. (Yikes, I sound like a 70’s crooner.) The first of October we head up to Howe’s and get some pumpkins for the front porch. I love the tradition. This year we waiting til the end of the first week, it was so hot and we feared melting pumpkins before Halloween. I didn’t wait to get the rest of the house decorations up though. I had seen our neighbor, the head of the PTO on the last day of September at pick-up and she commented that her family was waiting for our house to get going with the decorations as their cue the season was upon us. With those words, my over worked, exhausted, stressed and stroke symptoming body, perked right up. I got home and bounded up to the attic. The decorations came down by handfuls at first. I found treasures in the attic and set them up down stairs and outside, one by one. The frenzy and fever kicked in as the boxes got opened and I just started hauling them down the stairs, crashing into the door jams and stacking Halloween central on the dining room table. The pear tree gets the purple lights. The big bush gets ghosts and orange lights. The cobwebs cover the front porch, zombie hangs on the front door, witch flies from the second floor porch roof, skulls and purple lights stretch across the front. The headstone rests under the rose bush, Dracula sits in the front garden and Zombies clank their chains in the side yard before the shed. Around the base of the shed are bright orange glowing jack-o-lanterns on spikes and purple globes shape cobwebs around the window. All is well. I am dripping sweat and ready to collapse, but it looks good. Jason has to go to Tae Kwon Do, so I save the rest of the decorations and resting my bones for later. It’s all good, until I do sit down. Then I sort of dissolve into a mound of cake batter, sweet but unstructured, and totally undone.

That is the way this October is, full throttle and totally fun, but overly exhausting, for me. My aunt was heading out to Indiana for work for two weeks and was exhausted before she left. I hear that in her voice and I want to help. Each year she buys more bulbs for the yard. They have to be planted in the fall before the frost. It is so easy to order 100 bulbs in the summer. But when they come in the fall, the task is tough. We went out to Wessyfoo on a Saturday, mid-month to take our final dip in the pool. (I found out that day that it has a new name. Wessyfoo is the name I gave it at age 2, and it stuck. But our dear English friend and benefactor, Ann likes a proper name for things. That’s what they do in England. And so my aunt has done it here. Hemlock Haven: Hemlock for the mere twigs she dug 50 years ago on the mountain, planted in the yard and grew to great hemlocks. Haven is for the sanctuary that she and so many have always found at the bottom of the hill here. I like it. It sounds kind of witchy and mysterious which is good for the month of naming, too.)

The water was down to sixty degrees, but I have to do it every year. Tradition! This Saturday, I went to plant first and dip after. My aunt needed help and I could do it. I wanted to get my hands in the soil there, to put my mark on the land. My aunt pointed and I planted: 40 daffodils near the shed and down by the old apple tree, 30 crocus or “croakers” as my aunt calls them, and in the path through the woods to the brook, 15 English Bluebells. She had seen them with my Dad when she visited him in the spring and wanted them here. The work felt great. My mind cleared and my heart was full. Jenny was grateful and I was happy. The dip in the pool jolted any remaining cobwebs out. BRRRR! Brrr again. So into the hot tub we went after we leapt out of the pool. It was Jason’s idea. And it was a good one. What a gift.

I thought each day, that school would get easier, that I would get used to it and not be so wiped. But it has not settled down at all. We are doing a new reading program. I like to be steps ahead of my students, confident as a master of the road before my students. But not this year. I am working so hard, but on average, I am only a page ahead of my kids. My kids and I have spent the month reading an amazing novel, “Bud, Not Buddy” by Christopher Paul Curtis. It is an amazing novel about a boy in Flint, Michigan in 1936. The Depression is on and our Bud is in an orphanage. The book chronicles his journey. For each module there is an Essential Question which everything we do circles back to. For us, October has been all about how enduring hardships contributes to personal transformation. I can identify with that. And I identify with this boy and his journey, fueled by faith, struggling with fear and trying to roll with all the changes that life throws at him. The era of the Great Depression brings Gramma Harriet, Jean Granny and Dorgan to mind. And they have been with me all month as we read and talk. I told my kids how when my Jean Granny was a young girl, she went for a long walk with her two sisters. They walked out of downtown Westfield, far from the house her family rented. They walked all the way down to a small country lane. And on that road she saw an old farmhouse in a valley with a brook and a barn. She told her sisters that someday she would OWN that house. I guess she told my grandfather Dorgan that too. And sure enough, they did buy it and we are still there. In this work at school, I am reminded that I am not alone in traveling on a hard road. America has been through it, my family has endured and I too have had my tests. But the transformation brought about as a result of living life on life’s terms will blow your mind. Well, it blows my mind. Everyday, I am curious about what is on the next page. I am determined to bring my best to the work.

But it has been so much work. Growing and learning and changing is great work. But completely exhausting. I am trying to keep some kind of balance, rest a bit, eat well, enjoy the season, love my babies, and take care of business. Ha! And Double Guffaw! I am enjoying and getting it all done, but I too am all done. At night, I fall like a beautifully risen bowl of dough, punched down before the baking. My face doesn’t relax as quickly. The muscles are so tense and tight. It takes til about 2 am for them to relent. My mind is even slower to calm down. I haven’t taken the time to get right enough these days to make sleep very possible. Much of the month, I get about 2, 2 hour clips a night. This past week, I decided to do better and I have. I am focusing on the minutes and moments of the day more. I am using my moments before bed to practice some Reiki and give myself a good talking to. Nancy told me that when she couldn’t sleep, she would put her hands on her belly and” slap a few symbols on” her mind and let the healing energy flow. (That is Reiki talk for connecting your energy to the universe, and letting that energy flow through you and heal you.) Whenever I practice Reiki, I feel better. So the crazy, cuckoo pace of my life has not changed. But I changed a few practices. And this week I feel better.

World Stroke Day was on 10/29. I have to keep that upfront as I get ready for Halloween and am so busy with life, the work and its blessing. If I forget about Stroke, if I forget where I came from and how I need to live life, I have nothing. Looking back at 2003 and reading the letters I wrote and what I got for myself from THEM, I am shocked. I see Gramma Harriet in all of that action.   I see her in me now. I had no idea then that I was doing what she did, what she taught me. I was so into the fight for my life. I was a human doing, not a human being. That was my job then. That was my life. I was able to do that because of Gramma Harriet. She was a Union organizer for the International Ladies Garment Worker’s Union back in the days of “Bud, Not Buddy.” In the book, we learn about the sit down strikes going on as labor got organized. and what a fight it was to have what you need. So I thought about Gramma Harriet. Her life and work in Boston was full of helping others, making hard choices and doing the best she could for herself and others. She did the best she could with what she knew at the time. Mistakes were made, of course. What is marvelous about my Gramma is that as she knew better things to do, she did better. I always knew that. She never stopped doing the right thing, helping others and learning better ways, as long as she lived. And I am grateful. ( As I think about her, she didn’t sleep well or long either. She was up late and up early. And in between too. I remember nights during the summers I lived with her where she’d be up in the middle of the night. The stereo would go on and Louis Armstrong would rock the house. https://www.bing.com/videos/search?q=video+of+louis+armstrong&view=detail&mid=3BDD5D92203A709DA2FA3BDD5D92203A709DA2FA&FORM=VIRE  She loved the Great Satchmo. (When she died, we had a gathering at the house for her friends. And per her request, we played this tune and laughed.)

Then the vacuum would sound. Seriously. It would. In the cool of the night, she’d get up if she couldn’t sleep and we’d listen to music. And we danced, in the dark living room with the drapes wide open to let the cool night air in. If sleep was not happening, she’d vacuum. It was too hot to push that thing around during the day, but at nighttime it was the right time to zip around with the vacuum. When the sun came up, she was up too. Sleep or no, she was up to do the work of the day, catch a glimpse of the ocean, do something for others and always to take care of me. She was marvelous that way. And I am like her. God. NO I learned it from her and I practice it, because it works.

At school, I added some community service action into the day for me and my students. The crazy pace of the year made for student and teacher to develop the plan together. We found these Mad-Lib type stroke hero stories on the AHA/ASA World Stroke Day site. We all made them and printed them and hung them outside the room. We found a pledge to be a stroke hero, and we all took it. We found a hip hop video that teaches FAST and we learned it. https://www.bing.com/videos/search?q=hip+hop+fast+stoke+song&view=detail&mid=21929D6F825486E0469921929D6F825486E04699&FORM=VIRE

Then we made fliers for all students and staff in the building. We wrote and copied and cut. We got all the school together and showed the video. We rocked it. Everyone got the flier. They can write their story and take their pledge. If they bring the pledge back signed on Monday, the Red Wagon will be loaded with Candy and they can get a sweet treat. We did this. We got the message out, together.

And in all the rush rush, busy busy, there are wonderful moments too where I GET to watch my son, just watch. What a gift. I GET to watch him find his way and show himself. I GET to be a part of this amazing life that I have been blessed to nurture and protect. For some reason, I was chosen. Math Homework on the computer happens a couple days a week. When Jason is done, sometimes I call up songs that I think Jason might like. Maybe my students have turned me on to a great new tune or I have a great oldie. Whatever the source of inspiration, I share them with Jason. But one day, he had a song for me.

https://www.youtube.com/watch?v=5QNGp32UyCg

Jason sang along with Jordan. He had seen Jordan on American Idol. I hadn’t watched. I think I was already in bed those days. When I saw the name of the man singing the song Jason had picked, I stopped. I caught a breath. His name was Jordan, like my Jordy. I stopped and listened to Jordan and Jason.  His singing, sincerity and sweetness caught my breath. I didn’t ask Jason why he liked this song or what he liked about it or what it meant to him. For once, I kept my mouth shut, a modern miracle. I got to remember my Jordy and be with my son and be in the moment. It doesn’t get any better than that.

 

This year on 10/27 Marks 50 years of it’s the great pumpkin Charlie Brown. –beliefs….beliefs that comfort us. Stories.

 

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