September 3rd 2003 & 2016

Back to School September Much-Needed-Coffee Tawpic: Discuss


September is my January. It is my new year as I follow the school calendar. And Jason makes it two in my house that beat to this drum. So September is a good time to reflect on the lessons I have learned and set myself up for the new year ahead.

On a daily basis, when I pound all those big cups of water, I am taking care of me, for tomorrow. Taking my wonking-big aspirin and vitamins every day, gardening, meditation-of-baking, hugging my squirmy son, telling my husband I love him, and brushing my teeth are practices that are good for today and tomorrow. And I have to practice everyday. If I want a different and good life today and tomorrow, then I have to practice a healthy life style, everyday. I can’t take a day off, because this Stroke Survivor KNOWS that everyday is a gift I am not guaranteed.

The American Heart and Stroke Association has a great campaign along these lines. It says “Life is Why!” Ain’t that the truth and don’t I know it! (Thank you to my stroke for teaching me that.) They ask us all to think of our Why! Good question. The AHA/ASA asked a bunch of us advocates and survivors to personalize the campaign with our whys! They recorded us and use it in the campaign, in case someone has a hard time getting started on knowing their own. Jason and Tim were with me when I went to go record mine. Jason is too cute. So of course he was asked to be in the clip with me. I know that family is my why. They are why I do stuff today to try to secure a good tomorrow, with and for my family.   A daily focus on why is a very good idea for me. And isn’t it sweet that Jason says that I am his why. Yeah right! NOT!!!!!!!!!   What he really said when it was his turn was “Mom is wide.” Yup, for all eternity, that is what came out. Everyone cracked up laughing. It was classic. “Mom is wide.” (He got the version you just saw on the 4th or 5th take.) Talk about getting me right sized again. Things don’t always go as planned. They usually don’t. And that is a good thing for me to know.   I get to look back at a day with my family that made everyone laugh. I am blessed to have that day and this one.

When I practice THINKing before I speak, my family today, and me tomorrow, are totally grateful. (Believe ME!) I found THINK for my students at school. But this summer, I put it on my fridge for me, everyday.

Before I speak, T- is it true? (mostly, but often brutal truth),

H- is it helpful? (does nagging count as helping?),

I- is it inspiring? (ouch- that’s a saintly aspiration),

N- is it necessary? (more than likely-NOT),

and K- is it kind? (Sarcasm is not kind, right?)

I am a work in progress, not perfection. (Thank Goddog) I practice because I know that good habits today will mean less messes I have to clean up tomorrow. My belly-barometer definitely lets me know when I have done the wrong thing. I practice because I want more peace in my life. I practice because, bottom line, I need everyone in my life. Every thing I have today, my continued recovery, depends on the people (and Goddog) in my life. (Nothing I do, was my original idea. I am taught and inspired and healed by my peeps.) Alone, I am sunk. I know this about me today.   I depend on my network, for my life. I must take action everyday, feeding a healthy lifestyle.

And I WILL live a happy life. Yes, I mean that. It is my decision. And today, I choose to be happy. The way I look at it, I did not survive a stroke to be miserable. Being happy, for me means living life on life’s terms. I have to accept reality. That practice makes me happy with what I can do, instead of pining for what was or should be. My happiness comes from doing things for the peeps in my life.(I work best when I do for others, not thinking and talking about doing for me. I know this today. )

So I must act right today, in the hopes that my peeps want to be around me tomorrow, because I enrich their lives as well as my own. I hope. All these actions and practices are money in the bank. I am paying it forward, for you and for me.

Not everything our future self will thank us for, is done on a daily basis. Some things are done only once, if we are lucky.

AND nothing set my future up for better living down the road, than marrying Tim on August 23rd, 2008. We had been friends for 2 years. We had “dated,” for lack of a better word, for a few months. A mutual friend wanted a St. Patrick’s Day supper, home cooked. We agreed that he would get the beef and I would cook and host the meal. We both invited a couple of friend to join us. Tim was one of the friends that came to supper. It was a wonderful night of food and friends. That meal ended, but Tim and I didn’t. I started inviting just Tim over for supper. And he came. It was so strange. I didn’t really even think about it. I would be near him, and the invitation just came out my mouth.

Since my stroke, at age 30, (when EVERYONE else in my life had families and loved ones and lives, Oh My! ) I had whined “30 years old and no man, no baby. But I get a big, ole’ stroke.” Over and over went the mantra. But that year, the line ceased. It was replaced with, “no man, no baby…I’m gonna get me a super PHAT car. (my students taught me it meant, Pretty Hot and Tempting set of wheels and made me sound maybe a tiny bit cool. Maybe, they said.) Saab was what I wanted, with leather and sunroof and heated seats and comfort galore. A teacher/friend had taken me to a dealer. I had gone for a test-drive and worked out the money end. For 6 months, I set my sights on that dreamy car and saved my pennies. That dream for myself, inspired and motivated me to do the next right thing and work hard for the duration. It felt good to pay it forward, to MYSELF and not wait for someone else to do it for me.

Right around our St. Patrick’s Day feast, I went to a trusted car dealer and asked him to get me a Saab at auction. He said he would do as I wished, but that Saab wasn’t the car for me. It was a raw, rainy afternoon. He pointed out his window and said, “That’s your car.” Through the dark and gloom I saw a jet black, glistening beast of a car. “That’s a freaking Lexus,” I said in shock, with eyes wide open. “That’s right. That’s your car.” He repeated. Cynics may say that he was just trying to make a sale. But as I said before, I trusted him. And so much more important, is how I felt when he said those words to me. I saw that jet black, glistening,LEXUS beast as the holy grail of luxury cars. It was a “cool person’s car.” It was something unattainable for me, for the others in life,. And here he was saying it fit me. That Lexus was supposed to be MINE. (Wessyfoo clan says that “Mine” was a big word for me as a child. I came to believe that it sort of defined me, clutching stubborn hands and saying that word.) What I heard that day was that I was worthy of what I thought, was the best. And other people saw me as worthy too. I was no longer the perpetual victim. I was a survivor and I was living the life I had only dreamed of.

It was a spiritual awakening for me, to be sure. I bought that Lexus. And I loved that Lexus. (Yup, I loved a car. And Lola, my Pomeranian Goddog, loved that car. She looked “the bomb” seated in it, front seat of course.) I picked the car up a few days later and went to hang out with friends. I saw Tim there and dangled the key in front of him and asked if he wanted to go for a drive. Now, you must understand that I did not do this! I swear, I have no idea why I would do that! That is so not me. I had just picked up MY dream car. And here I am offering a newish friend the keys, to drive ME around in MY new baby! It was MINE and I was sharing. What? What was that about? I didn’t stop and question it. Tim took the keys. He was as shocked as I was by the invite and his own response, Something greater was at work here. We both recognized and cooperated with that magical moment that brought us together.   We got into the car and he drove us down the road, in total silence.   Speechless. Blessed.

In the weeks following, I cooked meals for us, with increasing frequency. He taught me Backgammon, and we watched Red Sox and Celtics games. We played darts and I always lost. (And it didn’t bother ME to lose. What? That’s not me.) We drank coffee and sat in front of the fire. And then one day, Tim was the man who came to dinner, and never left. Hikes in early spring to special places, introductions to his family, and outings with friends were added to our days together. School ended in June and then we got “THE NEWS.”

My Doctor S, told us we were going to be parents. Inconceivable! And yet, reality. Lola, the Goddog, had picked Tim for me and I had cooperated. And cooperating is not one of my strong suits. This inconceivable sequence of events was not of my pushy and controlling design. I deviated from my normal course. I got off the roller coaster and followed my peace. Good people in my life, suggested that life could only be lived one day at a time. And I believed them. I wanted family. (My solitary, actions done in isolation, were not reaping my desired results. If I wanted family, I would have to find and make family everyday with the people in my life. If I wanted family, I would have to watch and learn and be taught by people who had the family that I so desperately wanted. My heart’s desire.) And this one time, for no good reason of my own, I followed the best man I knew, for me.

Tim started asking me, once a week, to marry him. I didn’t exactly say no. I didn’t exactly say yes. I didn’t exactly believe that I was pregnant and we were going to have a baby. It was so surreal. (It still is.) My Doctor S had saved my life when I stroked out in her office. My Doctor S. had told me I could teach other folk’s children full time after my stroke. My Doctor S. told me that I was healthy, but that having my own children, wasn’t in the cards. And I believed her. And here I was, pregnant. My heart’s desire.

My stroke made (and still makes) parts of my body pretty quiet. I didn’t have morning sickness. I just wasn’t really hungry for breakfast, I think. It was and is hard for me to listen to my body. I felt different. I knew something was different. I was exhausted, I think. But was it my normal stroke thing? I had puffy ankles. But was it my normal stroke thing? I was moody and emotional. But was it my normal, Rachel trying to be human, thing? I believed MY Doctor S. when she said that I was pregnant.

But the “normal pregnancy” stories that I believed because my family of friends and society told me what normal was, were NOT my experience. I wasn’t normal anyway. I wasn’t supposed to be pregnant. I wasn’t supposed to be able to have a normal life as a wife and mother. (Honestly, I hadn’t wanted normal for most of my life. Or really honestly, maybe the truth is that I desperately wanted it, but didn’t know how to have it and couldn’t yet ask for help. My stroke, got me real honest- real FAST.)

The fact that I was pregnant, was an extraordinary, inconceivable reality for me. (I keep saying “inconceivable.” I love that word ever since the classic film, The Princess Bride.) That traditional family unit was not me. But here I was. And Tim wanted to get married. He wanted to marry me. (What a crazy notion, I thought then, and now.) Neither of us wasted time with the predictable question, “would we even be considering marriage if I wasn’t pregnant?” For that I am grateful. We both were following a path, not of our design. Yet we both knew it was the right path. “Life is Crazy,” Jean Granny would say. So Tim would ask me to marry him. I would laugh. Was he serious? Why was he doing this?

Each week, I’d add a bit more thought and a bit more dialogue to this marriage proposal. The first time, I just laughed and said “seriously?” I couldn’t wrap my head around the idea of me being a married mom.

The second time Tim proposed, I laughed. Then I said, we’d have to be good parents, for life. What would that look like? What did it mean to be good parents? We talked a bit. Tim told me how important he totally knew it was right for us to be one family of 3, under one roof, with one last name. He knew. This time, I took the deep breathe and some time to think.

The third time he asked me to marry him, I smiled but didn’t out and out guffaw. I turned and looked at him. I told him that I was only getting married once. This was for life. This time, he took a breath, a deep breath.

The forth and final time he asked, I was watching the morning news, sitting right in front of the air conditioner on the blanket chest, at the end of the bed. I was trying to muster the energy to get dressed, or at least partly dressed. Tim came and sat beside me and held my hand. I might of smiled nervously. I knew what was coming and I think I knew that this time, I had an answer. He asked me to marry him, for life. I said yes, but…(Yup, I agreed to marry him, but I had a “but” he had to agree to.) I told him that we had to have a good and happy marriage. I admitted I had no real idea how to do that. But that each and everyday of our life, I needed us to practice a relationship that drew us together and inspired us and made us happy. Every single day. For the rest of our lives. I remember saying that it would be hard work. Tim took another deep breath, and another. He agreed. We could have shook hands on it. But we didn’t. He wrapped my sweaty, bloated, cranky self into a big bear hug. He kissed my unbrushed mouth. And that was that. Time to make breakfast for him before he left for work. (I was thankfully on summer vacation.)

It was sometime that morning, and I don’t know who called who first. “When and Where are we going to do this?” emerged the new question. It had to happen this summer. We had to get married while I was on vacation. That is an unspoken part of the teacher code. But where?

We went out to Wessyfoo to break the news of the baby and the wedding. And the answer to Where, came quick. Wessyfoo. It had to be. What a celebration for Jean Granny. Her long ago found, family home would bear witness to our wedding and to the next generation of the clan. Meant to be. I think Tim and I were in shock at such massive, rapid fire decisions and changes. While we sat in disbelief, the Wessyfoo family sorted out the details. Within minutes, August 23rd was secured. My aunt and uncle and New York Cousin, bantered the summer calendar dates around like ping pong balls over our heads. And the date emerged. It was the one true day. (I hoped it would be sunny.)

A budget was awkwardly discussed. (A wedding gala is not what any of us wanted. That would never be our focus. Family was the focus. We wanted our family and friends to be together and eat together as we became a family. Food, extra chairs and tables, wedding bands and fresh wedding garb were the noted on the list of expenditures.) A location for the ceremony, down by the old apple tree on the way to brook, was set. As sacred spring and early summer flowers would have passed, the field could be mowed and would make a perfect spot. The meal would be in the barn. The menu would be Sesame Baked Chicken and Potato salad. The wedding party was decided, and would of course include a beautiful girl escorting the equally beautiful Goddog, Lola. My aunt would prepare flower arrangements and a few bouquets to be carried. The ancient hydrangea, phlox, and asters would provide their blooms. And that was that.

Back at home, preparations continued as new parts of our plan were revealed. A cake? Of course, a cake. A real and proper, white and tiered wedding cake. And I wanted to make it. And I wanted it to look good and taste better. I was home for summer anyway. I guess I wanted a challenge. That hot and pregnant summer when I could have rested up, I wanted to get involved in this Big, with a capital Huge, project. My dear friend, when I told her I was pregnant, said “the baby eats your brain, and never gives it back.” I think she was right. And I think that explains why I got involved in making my own wedding cake.

But Tim came through with way to make it happen. Tim always comes through. His friend was the head baker at a local college. And he would take me under his wing, and teach me how to make a right and proper, tiered, white wedding cake.

The cake became my top priority of the summer. Of course it did. Baking and sugar and getting my hands in flour, made sense of my wild and crazy world. It was a stabilizing force at an incredible changeable time in my life. (I guess life is always that changeable and baking has become a sweet anchor for me, everyday.)

Our baker friend came over once and we worked out the specs of the cake. Each layer of a tiered cake is really 3 layers of cake put together and then frosted to look like one big layer. Did you know that? I had no clue. But I was going to do it. We would do 3, 3 layer tiers in descending size up to a 6 inch top cake. We would decorate with buttercream frosting and perhaps add fresh flowers in Wessyfoo.

None of the fru-fru fake stuff on there. Save fru-fru for decorating the nursery or for the clothes for the baby that the doctor told me would be here in February. I really and truly still could not wrap my head around the fact that I, me, the strokey, was pregnant. How could this totally normal and human thing be happening to the freaky robot alien that I had been a few years ago? Since I couldn’t understand it intellectually, I did what my stroke had trained me for. I did every right action that might help me and the baby be healthy. I followed trusted, expert advice, to the “T.” On a physical level obviously, my post-stroke body was healthy enough to be pregnant. But it was very definitely a post-stroke body, a very quiet and often sensation-dull body. My spirit was alive and telling me being pregnant was a singularly huge event in my life. My body wasn’t speaking so loud.  I didn’t feel the way they described in the pre-natal books. Things about me were growing and changing, yes. But all the physical sensitivity and twinges of babiness that it said would happen at week 5 or 10, not so much. And there was no one like me that I could go to who understood. So I did the best I could, living every second WAY outside my new comfort zone, and focused on baking the best wedding cake to honor this new life.

Our Baker had his recipe for the standard cake and frosting from his college, printed out for me. He would call me and give me assignments as needed. I had no idea what I was doing. This wedding cake was WAY out of my realm of baking. For once in my life I was asking to be taught. And I committed to be the very best student. (Thankfully I had learned from my Uncle Chef. I knew better than to question my teacher.Just do what the baker said.) I would wait to be told what to do. And I would do it. I had faith in him. He knew the process. He knew what was best. I didn’t. I sat back and waited to be told what to do. (I know, totally not my usual. I know, sometimes it is hard for teachers to be teachable. I know, I am so grateful to my stroke for giving me that gift.)

The day before the wedding, Our Baker returned with what looked like two massive, construction workers tool boxes. But they were my kind of tool boxes. They were filled with baking tools: 2 big turntables for putting cakes on while you decorate, a dozen different spatulas at least, mounds of bags and tips for piping by the dozens. In my kitchen, Tim, my dear friend and her daughter, Our Baker, Lola and I gathered. Tim videotaped the production for my Dad and Dorothy in England. (Recording and watching the wedding was not the priority. The cake was. I love my Dad!) Our Baker, did. I watched. Then I did. And that afternoon, THE Cake was born.

Somehow, I just knew that under Our Baker’s direction, the cake would turn out magnificent.


And it did. I had faith in the process. (I think that practice helped me have faith in other areas of my life too. I think the process and success of that day, gave me confidence in my ability to be a good wife and mother. “Life is Crazy.” ) That type of guaranteed results and control is possible with experienced bakers, and highly likely with a Master that I worked with. But in real life, with raising kids, marriage, jobs, and health, there are absolutely no such guarantees. All you can do is the best you can do today, fed by the love and grit and wisdom of those that came before. You set yourself up for a happy tomorrow. No promises, no guarantees, I know. But I know that when bad stuff comes down the road, regrets of making myself miserable every day earlier, never helps. That cake and that day, made for the sweetest and strongest foundation that I could imagine for our family.

The next day, our wedding day was sunny. It was the one truly perfect day that summer. The cake zoomed down the Pike to Wessyfoo driven by Our Baker. Tim and I, family and friends descended on Wessyfoo and we were married. The ceremony down by the old apple tree in the field, meal in the barn, dip in the pool, and of course the Cake, was perfect for us. I know Jean Granny and Gramma Harriet were there, smiling. I know that many there that day said that it was the best wedding they had been too. I know that I was happy, beyond pregnancy hormones. I know it was beyond my wildest dreams and infinitely better because it was real.

The only glitch surrounded the appetizer. My uncle had gone to Red Rose and picked up two Party Sized Pizzas to be cut up and passed as the appetizer after the ceremony, before the meal. When I got to Wessyfoo that morning, I was heading upstairs to change into my dress. And there it was. I saw it. The crusts of the sacred Pizza were cut off and piled up in the big pan designated for scraps to give to the ‘coons and other animals at night. The delicious, flaky, crispy, soft, sacred dough of MY Red Rose Pizza had been trimmed off by Chef Uncle to make little bite sized pieces of pizza for the wedding guests to enjoy. I freaked. I saw red. I know I yelled. I know I fumed. I know I grabbed several crusts and jammed them into my mouth. Thus stifled, my mom led me swiftly out of the kitchen and upstairs to get changed. I calmed down eventually. I forgave my Chef Uncle. And Tim and I left Wessyfoo that afternoon and got our own Party Size Red Rose Pizza to bring back to Worcester. That made everything alright, better than alright. We had cake and pizza for days!

Of all the things to remember about my wedding day, I remember the pile of pizza crusts. Life is Crazy, I hear my Jean Granny say. I remember other things too. I remember thinking how happy Wessyfoo was. Crazy. The house was happy having us get married there that day. I felt my roots dig down into the soil that day, solid and strong. I remember faces and hugs and families together. I remember kids splashing kids in the pool. How great to take a swim at a wedding! I remember realizing my truth. I would never have had such a day without my stroke. I knew it. Without my stroke, Tim and I would not have found each other. I knew that. Without my stroke, I never would have learned how to accept help and cherish the gifts I had each day. Truth.

I remember looking out the window of the Pink Room, where I was getting dressed. I saw Tim in his new suit down by the old apple tree. I saw the sun shine on him. I remember thinking that I couldn’t believe how lucky I was to have this day with him. He wanted to marry me. And he was here, dressed and ready to go. He was in it (our life), with me of all people, for the long haul. Life is Crazy. We didn’t dance or have a wedding song that day. It may sound corny, but family and friends enjoying the day, was the best music. At the weddings we have been to since, we have heard and danced to many of the songs that I have already played you. They speak to more folks than just me, I see. Today I shared an oldie, but goodie with Jason in the car: a classic tune remade as a duet by outstanding artists. A duet seems suited to a wedding song. Jason loved it and since he was an essential attendee of the wedding, his vote counts. So Tim, let’s call this our wedding song. I think Jean Granny would love the title. I know Gramma Harriet loved the artist. And the rest is history.


September 4th 2003

My INR has been through the roof. It was 5.0 the other day. From what I understand, my blood is running like jet fuel. I picture my innards sort of liquefying. V. Cool mind movie if I don’t take it personal. So I can’t take any coumadin for 3 days and then I get the blood checked again down at my hospital. They put me on 10 mg a day for three days to try to stablilize the levels.

Now I go for blood work again and it is 1.4 which is super thick and gloopy blood.

So the dose of coumadin is up to 15 mg for one day then two days on 12 mg. Then back to my hospital for the second time in the same week to check again.  It is up to 1.7 so I am going to stay for a week at 12.5 mg per day. Why is it going up and down so much? I feel the same everyday. (Like cr@*) Nothing seems different with me, but the blood says otherwise. I am trying to visualize the artery healing perfectly open wide and the blood flowing easily through it. I imagine that I feel good and am doing good. I am me again.   Then I open my eyes. There I am again, with my droopy, draggy face, cuckoo eyes, pasty skin and that look of terror in my eyes. The strokey reigns and is not dissapearing.

I keep checking my pupils in the mirror. I look for signs of the next stroke. They look ok and they are reacting to light the way they should. But I don’t believe them. My bloodwork says that I am pretty volatile on the inside. I have these near freaking out, panic attacks several times a day. My breathing gets psychotic. Then I forget to breathe and choke a bit. When I get back to whatever the heck normal is now, I have a headache. I sit and wait for it to pass or for the next stroke to hit. I hold the phone in one hand and pet Lola with the other while I wait. The stroke hasn’t hit yet. But I am not back to normal. I feel and look like death. I keep waiting to wake up from this nightmare and be me again.   But it doesn’t happen.

I am so grateful that my college/sister friend has some time for me. I met her and went to the mall for a bit one afternoon. It was nice just to follow my friend and her daughter around. We looked at pretty things. I didn’t have to do anything or think about me. I watched them shop and get a few great outfits for the now, 1 year old beauty. It was fun to see her get things. Her smile did make me smile, that day. The mall was bustling and I didn’t feel like anyone noticed me at all. I just got to blend in. That was relaxing. I almost felt good. I am safe with her.

Back at home there is no change either. They still say that I can’t have physical therapy and speech therapy. They still say that I have hit my caps. I am still getting worse without the care. I have only one physical therapy appointment again this week and it’s at the outpatient location. And I have no speech therapy. I am still trying to get more P.T. But they say that they need a new injury to increase visits. My chronic issues don’t warrant more sessions, they say. I am calling a lawyer. I have a friend from church who is a lawyer. I will call his firm and try to get help dealing with Them, that handle my insurance. I will tell Dr. S. about this at our next visit.

At least they are off my back about going back to work right now. My Doctor wrote a one sentence note on her prescription pad saying that I was unable to work until at least October 1st, due to illness. Short and Sweet and it worked. So I have a few weeks to try to fight for more time and help. I am getting another referral for services I hope. But there is a problem, for me. The referral request has crossed paths in the mail with the rejection letters. They had not received the referral for new PT from my doctor. So they sent a rejection of services, letter to me about my repeated calls begging for more PT. Now, in the hopes of speeding up rejection or help, I am going direct to the doctor who heads the Appeals department for Them. They say a letter was re-sent to me regarding this issue.  Then They said, they will resend the letter since I never got it. But they won’t tell me the contents of the letter. Then they transfer me to his secretary, when I call back because I have still gotten no letter or letters after another week and a half.

She asked me to go through a case manager because They don’t deal directly with patients. Then she asked for my name and date of birth and puts me on hold. Then that secretary told me that HE, the doctor in charge of appeals would call me back. And that was that. It seems like they know who I am in THE company. I don’t think it is a good thing. A nurse from my Doctor called me a few minutes after this big kufuffle. She said that I can get more PT at another location in the interim of the paperwork and policy being sorted out. The new location will call me for an appointment. Weird.

The next day, I hadn’t heard from the doctor in charge of appeals again, so I called the office. The nurse said he was out of the office until 430pm (out until then seems weird) but that he did have my message. She sort of hung up in frustration. I just keep letting everyone know I am waiting for answers. I am not letting them forget that they are supposed to talk to me. I keep calling until they give me answers. I am not working. This is my work.

The next day, I called back and she told me he was in a meeting but that he had my message. I said that I had been waiting two days and now I thought it best if I just come to his office and wait til he had time for me. She told me NOT to come.

I told her that it was just a piece of paper to him, but it was my right to see it and his responsibility to speak to me. She said “physicians (in that office) don’t speak to patients.” I asked her for the supervisor’s name so that I could try to get the answers that they said they had for me, about me. That person’s secretary suggested that I call Member Relations and get connected with the Office for Patient Protection since I was having a hard time navigating the system. I thanked her for the advice. I called Member Relations and a nice woman there said “any physician should speak to members.” She sounded frustrated. I was glad it wasn’t just me. It was Friday and I had no answers. I would go to the office myself, on Monday. The new PT place called and I told them I had a flare-up of my TMJ and needed to see them. I hope that was the right thing to say. Is that my new injury that will get me seen? I hope so. I just want to drool less and breathe a bit easier.

On Monday, at 10:30am, I walked into the Tower building that was the nerve center of Them. They told me that the first Doctor won’t see me. “It’s not the usual route to take.” she told me. The second head doctor was not in. So I sat down on a chair and told them I’d wait until someone could give me answers. A few minutes later the secretary told me that a Manager of Appeals would speak with me.   We went into a small room with no windows when he arrived. I was scared. No one knew I was here and now I didn’t know where I was. I didn’t feel safe. They had made it clear that I was not welcome.

The manager said that usually we would file a grievance and so he left me alone while he went and got a grievance representative. I was alone and getting more nervous. When this guy came in he said that PT at the new location would be indeed covered within the insurance plan. Good news. Why hadn’t anyone told me? But the original rejection of the PT by the big Doctor concerned me and why wouldn’t he explain to me why I was rejected or speak to me at all about my case?

The grievance guy said that I could file a grievance about big Doctor refusing to see me. I could file that. He went on to tell me that the “interpretation of benefits” showed that the therapy I was requesting was not a medical necessity for someone of my population. I guess getting TMJ more healed is not a usual reason for an extension of PT or Speech benefits. But I was NOT the usual patient. They knew I was a medical rarity for my stroke. (I had researched myself and knew that I was 1 in 1 million for my stroke at my age.) They knew this. What was going on here? The big Doctor had been given all the information about me and had still made a decision based on the other hypothetical 999,999 patients.   He was in the health care business? And I have the brain damage? I left the Tower knowing I had the therapies approved and so I sort of won. But I felt humiliated and shaken and less than. I went home and filed another grievance. I fell asleep reading the Member Handbook that night.

I got a call the next day from the Manager. He said that my representative was my Doctor and that they were used to being in communication with her. I told them that my Doctor had a great many, very ill patients and was very busy. I told him that I was representing myself, as I was the only patient I was concerned with. I told him that I knew of no other stroke patient that could be representing themselves. They needed the representation from an able bodied navigator.  I didn’t and I needed things to be done for me, now. I needed to feel that I was in control of something about my life right now. That was at 8:30am.

9am- called my neurologist and booked my next MRI for 10/6 with a results follow-up on 10/14.

940am I did check in with the Case Manager my Doctor had assigned me. I told her everything that I was trying to do and had actually done. She encouraged my pursuits and told me to check in next month. (I felt like she was impressed with how much I had done and how far I had gotten. I heard admiration for the patient from the case manager for the action I was taking. I felt she thought I could help a stroke patient more than she could. I both liked and hated that feeling.)

950 am- called the Office of Patient Protection again and left message.

955am- I called the lawyer I knew and left a message.

958am- called Medical Records to see if my file was ready to be picked up.

959am- called My hospital to get additional records and scheduled to pick them up on Friday.

NOON- Office of Patient Protection called me! They said I could file a complaint with the Division of Healthcare Quality. They would investigate to see if there had been a delay in care.

I might need a lawyer for that, they said.

I got a number for the Division of Insurance and will discuss the PT cap on benefits. I have to make sure that when I make my case, I connect for them that my PT is part of my speech referral. The stroke caused the TMJ and swallowing and speaking issues. And their treatment is connected. Both therapies are essential for my care and therefore they need to be looked at together, and not separately as had been done for me. They will send me a form right away and I need to include all of this information before I return it.

1210pm I called the Division of Health Care Quality. I got the address and am supposed to send a letter ATTENTION: Complaint Unit. I am to include the details from my interactions and issues. I am to ask in this letter for an acknowledgement letter.

1215pm I called the Division of Insurance and was put on hold.

1217pm The lawyer I know beeped in. His office can’t help me because they do work for Them. He told me to check with the Consumer Advocacy Group and Health Law Advocates. He told me to check with my union for legal coverage. He said he would call me back with telephone numbers and more details.

1220pm I called back the Division of Insurance and asked to speak to the legal team. I left a message with them.

Next Day-

1000am I called the Division of Insurance and was transferred to the office of General Council. Left message.

1001am I called the union and they will call me back.


Next Day

830am Called the man of my union, my friend who helps me. He said he will contact that state lawyers.

9am blood levels done at my hospital and then picked up paperwork that was ready. My Carole was there so I talked to her. She thinks her letter and its words might help clarify with Them. She wrote “the goal is not to decrease the droop (with the PT. Maybe they thought the PT massage was supposed to help cosmetically and that is why they had issues.) but to decrease spasticity and relax the TMJ so that there is an increase in mouth opening. Patient needs massage for this first and then strengthening.” The PT place had wanted to give me E-Stim and this “technique is counterindicated for my goal.”   Ahhh. Now I understand. We need to relax the muscles so I can open my mouth and then retrain them in the right manner. That makes sense to me. It might just work. But They don’t seem to think so, or care. And they have the power.

1030am- I talked to a lovely woman at the Division of Insurance and office of the General Council. She will get back to me next week RE: connection of PT to Speech with Stroke patients. I explained the 20 visit cap issues of THEM.

I got a letter in the mail today, that was not a bill. It was from Them. The Chief Medical Officer of Them had reviewed my grievance about the long delayed return call from the Big Doctor. There was an apology for any inconvenience. Then there was a paragraph of blah-blah. I say blah-blah with all due respect for Them and knowledge I am correct in my word choice. They have no idea. How is all this bureaucracy part of health care in general? How is any of this supposed to get me healthier specifically? Am I supposed to believe that they care about Rachel? I don’t really care if they do. I just want my life back and I need Their help.

Their Letter said that they don’t routinely discuss denials directly with members. It said that their handbook and staff inform members of alternatives. It said that staff should tell members to speak with an “analyst who can answer their questions or the member should be directed to the Appeals Department to initiate an appeal of the denial.” My concerns had been “forwarded to the Big Doctor and staff to remind them of this process. The letter gave me page numbers in the Handbook and telephone numbers for the Office of Patient Protection and their own office telephone numbers. It ended “We take seriously any comments or concerns expressed by our members and we thank you for taking the time to contact us.”


Now I know. I do want to get better. (Some part of me that is going through all this B.S., wants to live.) I don’t believe They want the same thing. I know no other stroke survivors can do what I have been doing for themselves to try to get well, or at least get what they deserve. They are dead or so disabled they can’t even speak. I know that I am finding out how this system really treats Strokeys and therefore what they believe the value of a Stroke patient’s life is. I know it is not right. I know that someone here is crazy. I know it is not me.


Most people I used to know are back in school. It is September and they are busy with a new year and new kids. My godmother/teacher friend had her second baby on September 12th at 9:04am. She weighed 9 pounds 5 ounces. She had a very rough pregnancy and I was no help, just added stress. She and her daughter are doing well now and came to visit me when she was one week old, after a visit to the pediatrician. I knew they were coming over and I wanted to be fresh and happy and ready. But I wasn’t. It was 11 o’clock in the morning and I hadn’t even brushed my teeth. I had a robe on over the sweats I had slept in.

Into my house came this shiny new mom, her beaming-with-pride-husband and this absolutely breathtaking, week old baby girl. I saw a happy family in my living room. And I was happy for them. The three of them were so beautiful and had such joy in their eyes and purpose in their day. They brought this angel for me to see and I did smile. Oh,I hope I smiled. I am not sure. I was not smiling at all inside. It’s like I was receding from life. Disappearing from the everyday life of the 30 something professional that I had been. Their lives were going forward. Not mine. And I knew it.

I am back at a Shrink for the millionth time in my life. My Doctors say that I am depressed and talking and taking medication is suggested. So I go. I go again. I’ve been in therapy most of my life. I know the drill. And now I am talking and taking medication, and I am no different. I talk about the stroke and what I feel and what I do everyday. But they don’t get it. They don’t know what to say to me now. A 30 year old with a stroke is something they have never seen. They let me talk. They don’t really have much to say back to me. They don’t have a clue. But I go. Whatever. At the therapist’s, I told her that I felt very ill. She actually drove me over to my Doctor. My Doctor checked me out right away.  I was fine. Panic Attack.

Next day: 905 am from the Division of Insurance: I was right. There is NO cap for Speech Therapy for Stroke patients. If it is medically indicated by my Doctor, they have to give it to me. PT is not included. Only services of speech and language, but if the condition is caused by stroke and can be treated in speech, I am covered. I was right. I knew it! Why don’t They?

4 days later: Went to the ER at 10pm for weakness and dizziness and trouble breathing. I couldn’t stand it. I really thought I was having another stroke. I wasn’t, and was home before midnight. I get myself so worked up and worried with everything. Going to the hospital and having them tell me that I am not having another stroke, should not be the only way I calm down. I just don’t know what to do anymore. This sucks. I am crazy.


So this month, everything changed, but not for the better. And nothing changed, I am not improving. I am so tired. But I barely sleep. And lately, when I do, I kind of wish I wouldn’t wake up





September 4th 2016

Since August 1st, the objective has been clear. In this house it is not about back-to-school or the end of summer, boo-hoo. The focus, some might call it obsession, is pin-pointed on Labor Day Weekend. It’s all about the Spencer Fair, and what goes on in the Exhibit Hall. Yee Haw. I have been thinking about it all year since the last fair. I make notes on the kitchen calendar throughout the year as I bake things that might be a winner for the fair, lest I forget.

I figure that this is my 37th year going to the Spencer Fair with my Mom. We always go on the Sunday to watch the Horse Pulls. We sit and watch the teams pull the boat as the load increases to thousands of pounds. We see the same folks in the crowd, horses pulling and fair people working in the dust of late summer. Year after year. After watching a class or two, we walk around and look at the Poultry tent, the Cattle Barn, buy a few things in the Industrial Barn and make our way, always to the Exhibit Hall. People, young and old, show veggies and flowers that they have raised. They put up canned goods, crochet and tat, take photographs, make Veggie Animals and they Bake! They bake apple pies, quick breads, cookies and coffee cakes. Tables and tables are covered with magnificent foods, all with only one small slice cut from them, for judging. And some get ribbons. All this effort and time for pretty ribbons, I used to think. How silly!  As a child and into adulthood, I walked through the Hall, judging what others had done. I stood outside and commented on whether things were good or not, when all I had done was paid for a ticket to get in.

But my stroke changed all that. Thank Goddog. I decided to put up or shut up, so to speak. That first fair after my stroke in 2003, we went. It was only for a couple hours and even that exhausted me. I wasn’t into much that year, but I had to go in the Exhibit Hall. I remember looking at the apple pies and wondering about who made them. I didn’t say a word negative, for fear of hurting the baker’s feelings if they were nearby. I did say out loud how pretty the pies looked and how I wished I could taste them. Something had changed for me. My perspective was different and I could no longer stomach judging from above. I had changed. For the better, I realize now.

I decided to become a part of the Spencer Fair: I would enter things and be a part of what people came to see and enjoy. 10 years ago I made my first entries. I think that first year, I put in 3 or four goodies. It was terrifying to figure out what to put in and where to put it and how to label it and wondering if I got it “just right.” It was also the greatest rush. No one knew who I was. No one knew me as a teacher or stroke survivor or anything. I was just another entry. They just knew my baked goods. And they liked them. I got a ribbon my first year. I strutted around the fair that year like a prize winning rooster. I was proud.

Over the years I have increased the amount of entries and expanded the range of categories to include photographs, crocheted items and blankets, and decoupaged trays. The baking and crochet win ribbons every year. The others have all won the hearts of those I give them to as gifts. Jason has entered and Tim and my mom.

I think planning for the fair and preparing all the entries serves another purpose for me. It is hard to transition from summer, back to school and fall.   I love the summer and its’ family time and fun. But I also love that I get to go back to school. The routine is good for me. Contributing to my city and helping children is something I need to do. Yup, I need to be a part of helping kids grow and realize their potential. I am healthy enough to teach full time. I know that I have a gift many stroke survivors do not. I love so many that I work with and I think kids are the “bee’s knees.” But the transition is difficult for me. I think so much, too much. I can be a worrier and a control freak. Focusing on the fair and its’ glorious celebration of what our community grows and makes is just the ticket for me. It helps me get organized. I am disciplined again to get all my entries in order. I set the highest expectations for myself and I look forward to the day. It is a good practice for me. The fair is still a family tradition on Labor Day weekend, but it is something more as well. And this year was no exception.

Jason’s entries: This was his last year entering as Pre-Junior.

He entered at photograph. The picture he took at Wessyfoo this summer, just gazing up to the sun through the black walnut trees. He picked the shot. He took the shot. We had two copies printed; one for us and one for Jenny. He picked out the matte, decided which way it was oriented and wrote out the entry card, front and back. Result: First Place, Blue Ribbon.

He entered the Snack Mix category. He made a Cinnamon, White Chocolate Covered Pretzel Mix. The recipe required making a hot sugar butter mixture in the microwave. He measured and mixed and worked the microwave. He put the caramel mixture on top of the pretzels in the big baking pan. He mixed. I put the pan in the oven for 10 minutes. Three times, at 10 minute intervals we would have to take out the pan and Jason would carefully stir the pretzels to make sure they were getting coated. He did mix. He did lower his forearm and get burned on the hot pan. He did run out of the kitchen swearing off baking and the fair. He did come back. He did mix again. He did burn again. And he did come back again. He added the white chocolate and mixed. He let it cool. He tasted it and smiled. All was well. The fair only requires one cup of mix, so we had lots to share and eat. Result: First place, Blue Ribbon. Next year he says he will enter 4 items as a young Junior exhibitioner. One of them will be in legos.

My Mom entered her sunflower collage. It is an incredible, vibrant, and cheerful creation. Result: First Place, Blue Ribbon. And it hangs proudly in her kitchen next to countless other treasures she has made.

I entered Fruit Muffins. I could have gone with Jordan Marsh Style Blueberry Muffins. But nah, it didn’t tickle me. I saw a recipe for Apple Snickerdoodle Muffins. I made a dozen sweet vanilla and apple muffins. When they were hot out of the oven, I rolled them very gently in melted butter. Yup, they bathed in buttah. Then I lovingly rolled them in cinnamon sugar. Oooh and Aaaah. I got Jason to eat one right then. He ate it right up and wanted another for breakfast the next day. Result: First Place, Blue Ribbon.

I entered Healthy Choice Cookies. My Aunt’s recipe for Healthy Choice Zuke bread had won big a few years back, so I was intrigued again by the healthy choice idea. I found a recipe for a Carrot Cake Oatmeal Cookie which actually has some nutritional value as well as sounding delicious. I tried out the recipe and made them for the Back-to-School for teachers breakfast. They went over big. So I made em for the Fair. Result: First Place, Blue Ribbon.

I entered the Quick Bread category. This summer I was obsessed with this particular Double Chocolate Zucchini Bread that Fran Farmer highly praised when I brought it to her. So I made that, with all the love I have. And it had her zukes and our friend’s honey in it. Result: Second Place, Red Ribbon.

I entered the Coffeecake Category. Coffeecake has been a good category for me. This year I was keeping it simple and sticking to my New England Roots in my entries. So I made a Maple Walnut Coffee Cake. There was ½ cup of real local Maple Syrup in the topping. There was ½ cup of real local maple Syrup in the cake. It was loaded with syrup and walnuts and butter. Result: Second Place, Red Ribbon. I was picking up the ribbons and clearing up the goodies at the end of the fair and I got to talking with the lady who won Blue! She was packing up her food, not throwing it out as I did. She said that this year as it had been such cool weather, the cake would still be good and she always ate hers. No Waste. So I packed up the cake and brought it to my crocheting friends. They ate up every last crumb and awarded it their own blue ribbon smile!

I entered the Homemade Chocolate Cake with Vanilla Frosting Category. This was a new category and meant to be. I had Jean’s Chocolate Cake (the only birthday cake you would ever have, want or get in Wessy) and the Henry Sugarhouse (Wedding Cake) Buttercream frosting recipes. I had never paired the two recipes. But the moment I saw the category, I knew. I made a big bundt cake and planned out my frosting tips for the best effect. I got worried. All the entries had to be inside a plastic bag when we submitted them. How and why, would I put the frosted cake in a bag. I wondered. So I put the cake in my big covered cake pan. I packed bags and saran wrap and chopsticks which I could try to tent saran with, if needed. I brought the lot to the fair. I asked the head of adult exhibits what to do. She laughed. They had not even thought of that. But of course one couldn’t bag it. It would stay in the big cake pan for the duration of the fair. Result: First Place, Blue Ribbon and the big Purple Ribbon. Let me explain. One year at the fair I got a couple blue ribbons and ONE HUGE RED Ribbon; it was for Reserve Champion. I didn’t know what that was. When I asked, I found out. It was second place in all of adult baking. Of all the first place goodies in all the categories, mine was the second best. That was so cool. But of course, I set my sights on the BIG PURPLE ribbon for Champion. Every year since, I have told everyone how I want that Big Purple Ribbon. And every year I put my entries in on Thursday. They are judged that night. And every year I have to wait until I go on Sunday to get my results. Friends go and know, but never tell me the results. I wait and wonder and wait and then see. Not this year. This year, a friend posted my chocolate cake on Facebook with a BIG Purple Ribbon on top. I didn’t know how to feel. There it was! Success. But it was not Sunday and I was not at the fair and this was not how it was supposed to happen. How was I supposed to feel? I asked Jason who looked at the photo and simply said, “Happy Mom, you won.” He kept it simple and got me back on track. Then my friend on Facebook asked me what Reserve Champion meant, because that is what it said on my ribbon. What? What was that she said, reserve champion? I told her it meant second place. But that was inconceivable to me. I saw the Big Purple ribbon with my own eyes. I spent hours googling what the ribbon was and every time it came back that it was Champion level. That is what I had wanted. That is what I saw. But I knew my friend. If it said Reserve Champion, that’s what it was. That was reality. I tortured myself in this debacle til the next day. And Sunday, I saw it for myself. There was a small purple champion ribbon on the other lady’s apple pie. And there was my big Purple one. Around the hall I saw other small Champion ribbons and other Big Reserve ones. I left the barn still confused. I had to muster the courage to ask what the ribbon meant. I re-entered the Hall and asked the director of Adult Exhibits what it meant. So here it goes, The ribbon company messed up. The Reserve Champion ribbon should have been red and big. The Champion ribbon should have purple and big. So I had won reserve champion, second best in all baking again. And I had won that BIG Purple Ribbon that I had wanted for years. Ha! Now I have to be more specific. I have set my sights for next year. I want the BIG Champion Ribbon, full stop.inage-4a-for-9-3

I entered Granny Square Afghan in Crochet. I had started this blanket at Easter time, endeavoring not to buy any new yarn. I was inspired to make an entire, rockin beauty of a blanket with all the yarn that I had accumulated from friends, in the attic. The colors were bright like an Easter Basket, but progress was slow. Summer came on and I was determined to finish it for the Fair. I confess that I did buy the pink yarn around the edge. I had to. It needed it. And then as I neared completion Mom asked me who I was going to give it to. Surely I had enough blankets for myself she said. And true, I did. And all the September birthdays that were upcoming already had their gifts lined up, except one. My godmother/teacher’s second daughter, would be an official teenager on September 12th. And she loved pink. I checked with her mom that she would not find the blanket offensive as it was homemade. Mom said she would love it. And so it found a home. She actually saw it at the fair and told her mom it was beyootiful, without knowing it was hers already. And 13 years after first meeting her, I had something to offer her, from my heart. Result: Second Place, Red Ribbon.


I entered 3 photographs. We have a photo of Jason at 7 or so months old, propped up by the pumpkins at Howe’s Farm. He is wearing a sweater Granny knitted him and a red sox cap that my dear friend, from the wedding cake making day, had given him. I love that picture, but didn’t have it hung in this house. We matted it and entered it. I took a photo this summer in Wessyfoo, on the day I had lunch at Red Rose with the survivors. It is a close up of a bee on a purple bee balm. I love it. I matted it. I took a picture of Jason jumping into the pool at Wessyfoo this summer. I caught him mid-air, tucked up for a cannonball. We love that picture. I matted and entered that one. Results: No ribbons. Even better 3 newly framed pictures in the dining room and kitchen. The best. The fair was great again this year and we definitely enjoyed. The smiles, successes and surprises of this year’s fair are past.

Now we are fully into the new school year and focused on making the best results we can. Our new Superintendent surprised me and definitely helped me focus on what’s important this year. She started the year off differently than ever before. We got to see Liz Murray as a Back to School Celebration for the whole City of Worcester School folk. Amazing. Talk about paying it forward. The idea of “What if…?” plays a part in the practices of my today that my future self will thank me for. It is not my idea. Let’s be clear. At a school professional development a few years ago, we were treated to Liz Murray. This year she was back for our entire staff of school folks, right before school started. You might know her as “Homeless to Harvard” lady. The message is so simple and so true. Her youth of hardship and homelessness has not steamrolled and snowballed into waste and resentment in adulthood: quite the contrary and quite a hero of mine.

Her loving parents were caught up in the disease of addiction. They developed, and later died from AIDS. Her mother taught her to dream, but Liz’s life afforded her no real pursuit of those dreams. There was no daily practice of activities which are part of a comfortable today. There was no skill set, well-rehearsed to guide her to a happy future full of the satisfaction of achieving her goals. There was no future.

Her point to those who work with children is that for kids who live in the immediacy of crisis 24/7, there may be no hope or dreams. These children will look into our eyes to see who they are. They might not know that they are gifted and talented and loved. And if I can give that very deserved gift to my students, will I? I will. I can and so I will. That choice and practice, makes me happy today. And I believe that it will only enrich who I become to practice what Liz teaches, everyday.

For Liz, without parents who could parent, she lived on the streets of New York for several years as a teen. She stayed alive. Amazing. She survived. A miracle or… And when her “aha” moment came after her mother died, she chose to follow her “What ifs?” Liz used this idea to chase and achieve her dreams. Standing at her mother’s grave, realizing the waste of a brilliant, loving woman, she started asking questions. She said, “what if I went back to school? What if? What if I got straight A’s? What if? What if I went to Harvard? What if?” And in the hope created by that very simple practice, in the determination fueled by her mom’s death, and with the help of her peeps, she found a life of happiness. (I encourage you to watch this talk of hers if ya have time. )

I started the “What ifs?” with my students this year, as a way of feeding hope and dreams and inspiring dedication to good practices. They are so worth it. I have two cupboard doors that have been painted to be whiteboards. I went first and shared a personal “what if?” that I believe will help an important relationship in my life, if I practice it. I chose an orange marker and wrote my hope and told the kids that if it is there every day, I will see it and read it. And I intend to do it today, so that Rachel of tomorrow will be the better for it. I left the marker and went on with the work of the day. My kids don’t have to hope. They don’t have to pick up that orange marker. It was not a required task. They know that. It is their choice. They like that. And little by slow, the doors are being covered with “what ifs?” Example: “What if I write as neat as I can every day? What if?” The author of this wants to be an artist. He needs supplies. He saw a drawing pad that a fellow student had earned and asked if he could have one too. I asked him to identify something he “COULD DO” that would make him more successful in school. He said that he “CAN” write a lot neater. I agreed that his work would score higher if we could decipher it. We laughed. We agreed that if he committed himself to the idea and practice of just this “What if?” then he would most certainly earn the tablet. And so we encourage each other in striving for success. In our room, we are safe. That is what I strive to create. That is what I want to be for my students, a safe anchor. But I also want to inspire and support a flight into the pursuit of “what ifs.” I want us to do what is possible, and then go beyond. So we are trying a new practice in positive action, together. This is a new practice in a new year. I am hopeful and I am inspired.

I am also exhausted. There is so much that I get to do, want to do and have to do. And that is just at work. The same goes at home. And I go, go, go. I do, do, do because I can and I want to. I definitely deny that I should slow down and make the to-do list shorter. One of the things that I get to do and love to do is be a member of a board. I am a member of the American Heart and Stroke Associations, Central Mass Board for Advocacy. The head of the board is my friend Allyson who got me into this work and Blair who gets me going on the Heart Walk. Its’ members are an amazing collection of heart disease survivors and caregivers and nurses and lawyers and others. I am the lone Stroke Survivor. We all work to get the message of the AHA/ASA out into the community. We all want to end Heart Disease for our future. Anyway, I love this group. And we haven’t met in person in months and months. And so I really wanted to go. But the meeting was set for the Wednesday after Labor Day, in the evening, in a town that is 30 minutes away. I wanted to stay home and rest. But when I saw Allyson at Red Rose, I had told that of course, I would be there.

Since I hadn’t stopped to rest in weeks, I could deny the need. So I went to the meeting. I even baked for the meeting, of course. I wore a new shirt to the meeting. I wore a smile to the meeting. But under that smile was exhaustion, a budding cold, and some real pain, anger and humiliation from some struggles I am having dealing with Them and my Botox treatments. It was all there, under the real smile.

And that night, around the table with these professional friends, making plans to advocate for those suffering with heart disease in our community and arranging events that will help prevent heart disease in others, I lost it. I was there to help others. I was there to speak the needs of the stroke survivors who can’t, and I ended up melting down and crying over my issues. I tried not to start. I tried to stop. But the tears and the anger and the words poured out. Here I was advocating for others and I was denying my own medical care because of the expense. I had paid bills for years when I had money. I saved my “fight” for those who really needed it. I hadn’t filed grievances in 13 years. I was all better and wasn’t I doing great and I didn’t need help. And yet recently, I did file a grievance again. I had to try. I filed one over my Botox. And I lost. They wrote back that they appreciated my sharing my issues, but here were the regulations listed on page so and so of my Member Handbook. I was so humiliated. I see myself as a regular hardworking wife and mom. I should be able to pay the bills. I shouldn’t need the treatment at all. I should be able to handle this on my own. But the money I owe for spring Botox, remains unpaid. The money for the upcoming treatment is due. And I choose to pay the mortgage and go back-to-school shopping for Jason. The money isn’t there and yet the problem still is. I sat at that shiny wooden, boardroom table with those good people and I cried. I lost it. Through gritted teeth and with my jaw tightening up and making my speech slow and sloppy I dumped out my problem.

When I looked back at my binder to write about September in 2003, I was shocked and saddened to see what a replay of this month I am having now, 13 years later. My feelings of being humiliated by Them and feeling less than and being angry at my stroke are right back, fresh and raw and savage within me. It is hard and painful to look at the binder and remember and relive my life then. It hurts to see how bad things were and the pain I was in. And yet, I am proud of me. I am in awe of what I went through and the actions I took. I am grateful that I never truly gave up, for good.

But I am not back then. It is 13 years later and I dumped my problem with friends who love me. I have my stroke to thank for these friends. I would never have met them and be doing this amazing work if it weren’t for my stroke. If it weren’t for my stroke, I am not sure I would have ever learned how to ask for help at all. So that night last week when I spilled my guts, that was not my doing, for sure. (My stroke and my Goddog are behind it.) I had worked so hard to bury and ignore this issue. I did not want to talk about it. But it came out. It was meant to come out. It came out and I got help. It came out and I was not alone with this problem anymore. It came out and I lost the humiliation feeling. The anger at myself and my stroke left. It was replaced with hope and a plan of action.

My friends around that table listened while I talk, even though they were late getting home to their families. They told me that the pharmaceutical company that makes my Botox probably had a grant program that helped patients like me. I didn’t believe it, but I listened. The nurses told me I had to make more than one appeal. They told me to keep filing and I would get results and get heard, but not if I took the no and disappeared. They told me I was right to be angry and they were angry for me. They hugged me and told me to have hope and do what they said. Blair told me that he would call me the next day with numbers and help me put a plan into action. A lovely lawyer friend told me, “let us help you.” She meant it. I went home to Tim and Jason an hour later than expected. But it was ok. I was ok. I was better than ok, I had a plan. I was fired up and my sleepy son and a bit worried husband knew it. But I was fired up with hope for our family and for my health. I was supported by these incredible folks who had answers for me and truly loved me. Tim said, “Let them help you. You help them so much. Let them help you.” And I heard him. He was right. And Blair called back the next day with a plan. I would have to take action. It would be work. And he said that it might always be a nuisance to negotiate this. But it should not be and would not be something that I lost sleep over, worry alone at night. There would be a plan and I would take the steps. I had help now. I said I was still embarrassed by my breakdown at the meeting. He told me, firmly not to be. He was glad I had shared. He was glad I had told them. He said “Rachel, if we were with you and had a big problem, and you could help us, but we never shared, how would you feel?” I told him that I would be angry with my friends for not letting me help make things better. He said, “right.” I took a deep breathe. In that quiet moment, I knew. I knew he was right. I knew that I would find answers to this problem, and it might even go well. I realized I do help others, because of my stroke and because of me. I knew it was no mistake or accident that I had melted down at that meeting. I knew I was loved. I knew Tim and Jason were my anchors, but that there were others that had answers and could and would help. I knew I needed help. I knew I wanted help. And it got it. At the end of the day, I know I have hope. I know I am not alone. And here is a tune that proves it.


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