One of those, Middle of the Night, and I can’t sleep, trains of thought:
I have a bunch of friends who run marathons. And I think they are nuts. They are not 20 something girls. They are 30, 40, 50+ gals who love to run, evidently. I think that’s cuckoo cray-cray. They claim that running marathons makes them feel exhilarated and empowered. OK. They claim that the long hours of training and perseverance to train and endure makes them feel so proud of themselves. OK. I have heard what they said for years, but still thought they were off their rockers. Today I have a new appreciation and respect for their passion and dedication to running marathons.
I think living with stroke is like running a marathon. It is a really long road of training, goals, and recovery. The challenges and rewards are everyday. They never stop coming, if you are willing to do the work. And by work, I mean life work. What goals do I make today? What action do I need to take to achieve my goals? Where am I stuck and suffering? What action could I take to be free again? What have I said I would do? Do my words match my deeds? That is what matters. Life work means that every day I GET to be here, I begin again to do my best. It means that I am conscious of my faults and weakness. It means that I seek help and follow through on fixing those things that don’t work and stand between me and my goals. It also means that I credit and value my success. And honestly, I have done good.
I look back at where I was and where I am now. And I know the work it took to get there. I am proud. I love my life today. I want to keep going down the road I am on. I can’t wait to see what is around the next bend. And the most amazing peeps are with me every step of the way. I know I am up for whatever challenges come to me, I mean seriously LOOK WHERE I WAS. Look at what I have been through. I’m smiling at myself right now. I think my marathon runner friends feel this way. Cool.
To me, this quote means that I have to be open to life and it’s magical moments, all day and every day. It means that if I seek this way of living, I will find magic in the most obscure, mundane and unexpected experiences.
Bear with me friends! Selecting this quote for the blog and thinking about it for weeks as I write, has led me down just such a magical, mundane road. As Jean Granny said, “life is crazy.”
So I just googled Jonathan Swift and found him to be several hundred years older than I thought. An Irish author and satirist, Swift lived from 1667-1745. Centuries later, his words still matter and make sense, to me anyway. For two weeks, I have been thinking about his words and their message. How do I live life well enough to truly get the best out of each day? The importance of each and every day, is a concept that I live by, post stroke. But the challenge of evaluating for myself, how I do it, is a complex puzzle to consider. (And I definitely tend to over complicate things, anything.)
Several pieces of the puzzle have fallen into place recently. The most recent came from Jason. The radio was on as we headed to Rutland State Park for swim and sun before spending the afternoon working on my classroom readying. Jason heard a tune and asked me to turn it up loud, this more modern interpretation of Swift’s quote.
I never thought about this song beyond a great refrain and beat.
But with Jason’s help, I picked up on more in Bonjovi’s words. I heard Swift’s message in there. I hear the same, in both. And in the lyrics, Bonjovi gives credit to Frank Sinatra for sending the same message years before. https://www.youtube.com/watch?v=A6gBw-tK82E
From 3 very different sources, I get the same encouragement to be aware of the gift of today. And maybe that awareness is the point…Hmmm
While there are random experiences (that I try to cultivate) that come upon us unexpectedly and contribute to my good life, there are also those familiar pillars that have always supported me and still make life so rich. Living all the days of my life, has some constant, stable anchors. Thank Goddog. One of those anchors is Red Rose.
Have I told you my RED ROSE story?
I was born in Springfield Massachusetts; me and Dr. Seuss and other such fabulous peeps. I don’t have to go back so far, so dramatically in time, for this story, but I am channeling Sophia from the Golden Girls at the moment and she always has a good story intro to lure ya in.
Picture it, Springfield 1972, a girl is born and grows up atop a hill, overlooking the Connecticut River. In 1978 her mother moves to Worcester and the girl begins a new chapter. Every weekend her father picks her up on Friday, after school. They drive the Pike from Worcester back to Springfield. At the Toll Booth, the father gives the girl a quarter and she goes to the phone booth at the edge of the Turnpike Parking Lot. There is only one phone number she dials, every time: 413-739-8510. Red Rose answers every time and she places the order: Party Size Pizza please, half peppers and pepperoni and half black olives and hamburg (or mushrooms.) The girl gives the name Scanlon with her order and is told that in 20-25 minutes, it will be ready.
Back in the car, her father drives the girl over the highway and through downtown Springfield. They travel down Main Street past the Po’ Office, as the girl calls it, the Peter Pan Bus Station, Bay State Waste (as the family calls it), the City Square and on into the South End. Her father parks and gives her a big bill to pay for the sacred yum yum. The girl goes inside the beloved brick building with the white, black and red sign. There is a long wall of big glass windows that look directly into the kitchen. The ovens line two walls. There is a kitchen aid style mixer making dough. Its’ bowl is the size of the girl’s bathtub. Several men stand at big tables, shaping masses of dough into crust, adding sauce and toppings and cheese, and supervising the baking in the ovens. It is the warmest, happiest, and safest place on earth.
At the register, she gives her name and pays for the pizza. When the change is securely in her pocket, they hand her the order. A rectangular box as long as the girl is tall, rests in her hands. The steam comes wafting out the edge of the box and the smell is heaven. Same smell every time. The best smell every time. The heat of the pizza almost burns her hands, in a good way. The box sits in the back seat or on her lap for the ride home.
Knowing what is inside and having to wait til she gets home is torture, exquisite torture. But the pizza is so worth it: The perfect combination of crust and sauce and cheese and toppings. Ambrosia! And every week, for every season and occasion, there is Red Rose. Years pass, decades too and Red Rose is there for the girl ,become woman. During college she travels back to Springfield for Red Rose, even when her dad is in England and the rest of the clan in Wessyfoo. The pizza must be had. It’s that important.
And then in 2003, STROKE strikes the woman. She can’t eat for two months and then can’t travel for what could be a year. Red Rose is not an option. It is outside her comfort zone, the county. She must be safe and stay near her hospital. The focus is waiting for the next stroke, being the best patient for her recovery and the work of daily survival in a world and body that are totally foreign to her. It might be a year or so later, when the woman gains strength and courage to drive the Turnpike to Wessyfoo.
That day did come when she ventures down the Pike. Terrified and trembling she makes her way. And as she passes the Springfield exit, a number comes into her mind and out her mouth: 413-739-8510 resounds clearly and without hesitation. Of all the things to remember for 30 years, and all the information to be buried in STROKE trauma, and all the important things that should be recovered, the number to Red Rose is what comes out!
At that moment, our survivor saw it as a big signpost in her recovery. Here was something and someplace special to her as a child and woman Pre-Stroke, and apparently it was significant now. It was that important in my life. It is that important in my life. There are some places that endure, and Red Rose is one. There are some special people that endure, and our survivor knew she was one of those too.
When the survivor met her match, in Tim, she told him of Red Rose and its’ importance in her life. She took him down the Pike and past where the phone booth was once, at the Springfield exit. She took him straight to Red Rose. That was the ultimate test of their compatibility and enduring future. Would he pass? Of course. Tim knew a great pizza, as well as he knew a great partner, when he met them. Our survivor knew that this man accepted and loved her wholeheartedly and for life; for good and bad, with stroke and stubbed toes, with big changes and little ‘uns, and for her traditions and constants. This moment of truth, or test of marital compatability based on the love of Red Rose might seem over the top. But the pizza is that good. (And our survivor was pregnant with all the overpowering hormonal and spiritual changes that entails.Red Rose was of course, her craving.)
The next time they traveled the Pike and passed the exit on the way to Wessyfoo, he uttered that magical number from memory: 413-739-8510. The survivor cried with joy and the two became engaged.
The survivor married her anchor, in Wessyfoo that summer. And what would be the appetizer? Red Rose, of course. Her uncle went to Red Rose and secured two party size pizzas for the wedding. And the family and friends enjoyed. But the survivor bride and anchor hubby had not gotten their fill on that big day. So that evening, on their way back to Lovely Worcester; Survivor, Anchor and Lola Goddog stopped at Red Rose for their own honeymoon pizza. Their new life and family was off to a blessed start, with proper priorities established.
In the past 8 years, Red Rose has become beloved by the son, of course. It is the place they go to as a family when Granddad is here. It is the special trip they make when Granddad is coming home, for the proper celebratory welcome-home pizza. It is the only destination after a day at the Stroke Survivor and Caregiver Conference in Springfield.
This constant in girl, woman, survivor, bride and mother’s life, is a big part of loving and living life today! THE END of the Red Rose story, sort of.
This week in 2016, proves to be no different. (Thank Goddog for some constants in this ever-and-way-too-fast-changing world.) Very early in the summer, Red Rose called me again. The invitation came in the form of a dear friend and life-saver. When I reached out, through email to the American Heart and Stroke Association some 10 years ago, for help, this Wonder(ful) Woman reached out her hand to me. She took a personal interest in ME. Somehow, at a time when I was riddled with fear and anger, she made me feel important, special and valuable.
For my part, I think I was finally convinced that I had to start living life. I had to live, regardless of how long I might or might not have, and with awareness of the curve balls life WOULD throw at me. I had stopped living each day, waiting to die, for a long time after my stroke. And I don’t think that really counts as living anyway.
I was also convinced by this point, that the Stroke had changed and altered me forever, as all life experiences do. Whether we acknowledge that basic truth or not, it happens. I was ready to incorporate the label “Stroke Survivor” into MY definition of Rachel. I was beginning to embrace a way of life where I worked really hard, played really hard and loved the hardest. I had to find a way where I didn’t have to be in charge, and wasn’t focused on results that were way beyond my control. I was ready to be happy again, but not real sure how to do this with stroke.
So Wonder(ful) Woman, met a Stroke Survivor and seemed to think I was pretty cool. Even though I had reached out to her JOB, I never felt work-related to this Wonder(ful) Woman. I came to see myself through her gentle, loving and respectful eyes. I was a survivor. I was smart and had a lot to offer the world. It felt so good to ask for help and then get it and then (shock of all shocks to me) feel that I could help her and the AHA/ASA.
She initially gave me support and direction with some specific, work related issues. Her encouragement and resources really made me feel stronger walking back into teaching with confidence, versus self hatred and embarrassment. Over time, she opened me to new experiences that helped me, her, and the Stroke community. One of the first things she did was get me to start speaking at Stroke Survivor and Caregiver Conferences. In me, she saw someone to get up in front of others and speak, inspire and educate. It was a total 180 from how I lived with stroke previous. This was not the job for someone who hides from life. And I rose to her vision of me! What a gift to trust that she was right and I could do something this new and challenging? What a rush to be with my peeps!
When my classroom needs supplies, she sends a box. It is like Christmas in my classroom. All the desired essentials just appear: masking tape, markers, paper, crayons, pens. An unexpected bounty. Wonder(ful) Woman introduced me to an amazing group of AHA/ASA peeps that also became friends, real friends to me. And I have something to offer them. She got me involved in advocating for Stroke related Bills by going to the State House for Stroke Lobby Days. It is absolutely great to be a part of what makes my state tick. I can use my voice to speak for those stroke survivors who can’t.
This summer, she would give me another gift. This time, Wonder(ful) Woman made me realize that I could help Stroke Survivors who are only a couple years out. I guess I can be a power of example of life after stroke. I am 13 years out and better than ever. I am coming to believe that I might be important for their recovery. And she made me see that, because she saw it in me… But I am getting ahead of myself.
Wonder(ful) Woman emailed me in June and said that she wanted to hook me up with two younger stroke survivors from the Springfield area. She kept it simple, which is so helpful to me. These two woman were early in stroke recovery and it would be good for us to meet. Maybe they would want to get involved, as I have and it would help them too. We would meet for lunch. We would meet at Red Rose! It is convenient for all of us involved, geographically speaking. But in my heart I know, Wonder(ful) Woman simply had to have this deeply spiritual experience after hearing me rave about it for close to a decade.
Stroke is not always a joyous reason to gather people together. But paired with Red Rose and good friends, it was set on my calendar as a high point of the summer. (For one day, I would be a lady who lunched!) All summer I looked forward to the day and smiled when I thought about it. I think she picked Red Rose to make me feel good. I know that is pretty self-centered. Isn’t that crazy the way someone can do something so simple and seemingly insignificant, and it means the world to another? Aren’t I blessed by friends like her? It makes me realized how much I have changed that I even think this way. “Life is Crazy,” to quote Jean Granny.
Anyways, the day came last week to meet. That morning I changed my outfit 4 times. I was keyed up about meeting these younger ladies. I hoped that Wonder(ful) Woman thought I was doing well. I hadn’t seen her in over 2 years, other than Face Book. Jason and Tim drove too. We all went to Wessyfoo and the mens went golfing. I had a quiet hour to myself in the sun and pool. I enjoyed the time to breathe and swim and watch the trees. I followed a butterfly through the day lilies for a while. It was a gift to focus watch the butterfly because, again I was getting more and more nervous. In the meditation of the garden, answers came. I was nervous to be doing Stroke Stuff without Tim and Jason. I have been living with my stroke and doing all kinds of Stroke Related Advocacy Awareness Stuff, WITH MY FAMILY. We talk stroke at home and do stroke stuff together in the community. It is part of our family fabric.
But not today. Today I was on my own and I was scared without the safety and anchor of Tim and Jason. I felt better the second I acknowledged this truth. I took a deep breath and my shoulders relaxed a bit. I started to get really hungry for what I would be having for lunch! That was a good sign. I reminded myself that I was safe on my own. And I wasn’t going to be alone. I was going to a safe place, with a dear friend, to meet new friends. I would tell Jason and Tim all about it when I picked them up at Wessyfoo afterwards. (And I would bring goodies from Red Rose with me, of course.)
I drove from Wessyfoo to Red Rose over the roads I’ve known my whole life. I played music in the car, a bit louder than I do when I have Jason. Traffic was what it was. But I got there with five minutes to spare. I went to the register and told the lady that I was there to meet 3 ladies. And beyond her, I saw Wonder(ful) Woman standing and waving me over. And when I reached her and her big hugs, I saw my AHA/ASA mentor guru. She was there too. Suprise! Bonus! More Hugs! It was so great to be with them in one of my favorite places on earth. Next I was introduced to 3 extraordinary women. Two were stroke survivors like me, and the third was the mom-friend-driver of one of the survivors. I got to sit and look and talk and listen to this powerhouse circle of strength and grit. We took care of ordering lunch straight away. Thank Goodness for that. My mentor and I were determined to make that happen soon. I do better when I am not overly hungry. And if I am nervous, food is good. It helps calm me down and occupy my mouth, which can say stupid things. We ordered the (blocks, yes blocks of) Fried Mozzarella for an appetizer. I was not sad at all that I ate a whole one and got to take one home to Tim. They are out of this world! The house salad, I had never had. Health-minded folks at my table other than me, ordered it. And it was an incredible salad. The Driving Survivor, who just got back her license and drove to the restaurant on her own, remarked that she could eat just the salad, it was that good. She said she might fill up, just on that. I chuckled and agreed it was good. But I told her that I had separate stomachs: sweet, savory and Red Rose. I had a lot to go, before I was full at that table. She laughed hard and I knew it was a good thing that she laughed. Later I was talking about the blog. I noticed that she didn’t look around or make much eye contact. At first I thought maybe she didn’t like me or want to be there. I quickly realized that this was probably not the case. Her ways were probably about her and her recovery. Her life had been thrown upside down and inside out. She had been the caretaker wife and mother and then stroke turned the table. I cannot even imagine how terrible that must be. Her road is difficult in ways I cannot imagine. She looked so beautiful, serene and together sitting next to me. And at the same time, I could see that she had no idea who she was anymore and that scared her to death.
At one point I had commented that I was finally ready and proud to label myself as a stroke survivor. It meant I was stronger than anyone and meant for great things. She paused eating and I swear, she moved a bit closer to me. Then I babbled about accepting my stroke whole heartedly. I mean, the change had happened. I had to deal with it. I loved me now, because I had a fresh start and am recreating myself. Children in school have that clean slate of life ahead and I think I do too. Stroke gave me that gift. She totally heard that. I could see her grabbing on to this new idea and putting it away to think about it later. I was babbling about making my stroke work for me. With all we had been through, I was going to make stroke be a money-maker and work for me for a change! She laughed hard and said she knew I would do it. I would make it happen, she said. Her confidence and laughter lifted me up.
The large pizza we ordered was more than enough for me to eat 4 pieces, some to eat 2, the youngest survivor to eat 1 and me to end up taking home near 10 pieces of heaven in a crust. The entire table agreed that any leftovers were for me to take home. I was so grateful and so touched. I told them the truth, it saved me from ordering extras, because I certainly couldn’t go home empty handed from Red Rose. They all laughed.
The Youngest Survivor was there with her Mom-friend-driver. Both were lovely and sweet. I was bowled over by how well she was doing just two years out from her stroke. She hadn’t been able to walk after her stroke. Of course, they told her than she wouldn’t walk. But I sure saw her walk. Ha! Amazing. (But I come to know that Stroke Survivors always amaze me!) Our youngest Survivor was living on her own, but wasn’t able to drive now. She had got her license back, but had health issues and it was taken away. (That kind of set back must be so frustrating and humiliating. She seemed calm and accepting in a way that I never was poised enough to show. But again there was definitely anger and sorrow under the surface of this sweet, young woman. She was avidly seeking medications and programs that would stabilize her so that she could be more comfortable, and be able to drive. Her speech was clear, yet careful. She sat proud and her eyes and face and hair beamed with youth and beauty in a way that I am sure I NEVER did when I was 2 years out. One of her stories, sticks in my heart. She has spasticity in her hand. ( I was talking about the spasticity in my face. I was talking about Botox that helped and stress which didn’t. She brought up this story.) Her mom-friend piped up that the spasticity used to be really bad. She tried to do our Youngest Survivor’s fingernails one day. The hand was so tightly spasmed into a fist she couldn’t open it to paint the nails. I imagined her pulling and tugging at the young survivor’s hands with all her might and getting nowhere. They were laughing now telling the story. I laughed too. It was great to laugh with people that understand. The Youngest Survivor said that at home, alone, when she is hanging out and watching TV, her hand is open and relaxed. But when people come at her, for a hug or to do something to her, or when she is in public with strangers, the hand closes. It locks up tight, stiff and closed. I didn’t have a quick retort for this. I took a breath and looked at her. I let someone else pick up the conversation. I needed a minute to think about our Youngest Survivor. When she was alone, and safe, and calm her hand was open. And when people came too near, she closed tight. She had the words to beautifully tell her place in recovery. The story said so much about what stroke does to the WHOLE person. I was like that for years, and certainly can be that way now. There are times when my face whacks out and I can barely talk but not for some medical related stroke causes. The muscles are in spasm, but it is because I am feeling uncomfortable or angry or sad. The spasm is my body’s defense mechanism now, at times. The muscles tighten and protect me from pain, sort of. But I never had words back then, in a public setting which so clearly said that I felt scared and alone. I wanted to be touched, but didn’t you near me. My body had betrayed me completely. Stroke took away so much. It locked me up tight.
I saw right then the powerful connection between the physical, mental and spiritual parts of our Youngest Survivor. And I saw it in me. And I saw it in everyone. Whatever we have, and we all have STUFF, our entire being is affected. (Our society seems to like to keep us departmentalized. We go to our job and work. We have our religion, clubs and hangouts. When we are sick, one type of doctor fixes one bit and a different doc addresses another bit. All of our bits and bobs are treated separately. I don’t see this way works very well, especially for young stroke survivors. We have a whole lot of life ahead of us. But we need help and we do things differently than before our stroke. We have changed. The world and its’ systems need to change too. But that is probably another story for another day.)
At the end of lunch I was pumped. The experience of meeting these New Survivors and getting together with dear friends had filled me up. I had a rush of new thoughts and ideas. Everyone left and headed home, but Wonder(ful) Woman walked me to my car and we chatted. We hugged and caught up about our kids and careers. Marvelous! And then she gave me the kicker. She told me that the Survivors needed ME. I was happy living life post stroke. They weren’t. I thought she was just getting together a mini support network. I knew that in the two hours we spent together, they had helped me. She said that I always put a positive spin on Stroke and life. She loved that about me and valued my energy in her life. She said that they NEEDED me. They were not happy. Their lives had been shattered and their pieces were not picked up, yet. And I could see that. They looked a lot better than I did at that time in my recovery. But their hearts, I could see if I opened my eyes, were shattered. Seeing that kind of pain, rage, and sadness is tough. It is a very dark place that I know too well. I could see that in them. . I told Wonder(ful) Woman that I wouldn’t go back to that time in my recovery for a million bucks. It sucked. There was/is no nice way to put it. She could see that. They needed to see where they could be at 13 years out. They needed to laugh. She was saying that my life, that I, was an example for these two spectacular women. I have the privilege of growing older. 13 years out from a big stroke, and happy, at age 43 is a gift. And while the role of wiser, elder and mentor was something I thought was way down the road, I guess the moment is here. I guess I have some Sophialike-Golden Girls- ways about me. Just being me, I can help. I have a hard time seeing that. But for Wonder(ful) Woman, I will try to help and do the homework she gave me.
On the way home to Wessyfoo, I played a familiar beloved album in the car. Good tune, with good messages, that have seen me through tough times. It is the album I play when I go to funerals, to be honest. Weird, but true. I have gone to too many funerals in the past 13 years. At each one, I wonder why they had to die and I get to keep living. (My stroke does make me wonder/marvel at this second chance I have been gifted.) I honor that I have been able to love and be loved by these wonderful people. I suit up and show up. I can do that today. And this tune helps. (It’s also another take on Swift’s words.)
August 7th 2003
Coumadin levels stable for the past month. It is a pretty high dose every day, 12.5mg. But it is good that it has stabilized. I was right about speech. They cut me off, discharged me. I passed every swallow test they could throw at me. I was good. So they said I was all done. I miss Carole. I miss the work. And now I miss my jaw feeling good. It is starting to really get bad. I swallow fine. But my face hardly moves. The whole left side is freezing up. It’s hard to breathe during the day and hurts at night. My tongue feels so thick and sloppy in my mouth. I drool a lot. The tongue combined with the freaky slouchy face makes for speech like soup. It was nowhere near this bad right after the stroke. This is new. It’s gross. I am gross. I look bizarre and I sound demented.
I am trying to stay away from people right now, because it is so humiliating to be this way. I do visit with my teacher friend. She is so sweet to come visit me with her daughter. I am glad to have them in my house bringing their smiles and life for even an hour. I feel kind of like a grandmother actually. I mean, I feel old and feeble and have the young ones coming to visit me. It’s weird. It’s hard. I wish I didn’t feel this way.
I also spend time with my college sister/friend. We talk on the phone and make plans to see each other. She is taking time off from work as her daughter is so young. For some reason she answers my calls and we get together. It is a lifeline, those moments. I feel so accepted by her and less freakish. I feel safe with her.
Other than that, I am all business. My business is trying to deal with the big insurance company and downtown. My business is to try to stay afloat right now.
I had a Physical therapy evaluation this week. They say I am fine. Well, not exactly fine. Physical Therapy said that my muscles were spastic, which is common when you have a stroke. They said I had muscle tone and balance issues. They said that based on my re-evaluation, they would schedule me for 3 times a week for PT. But my insurance disagrees. I have exhausted my limit for visits for the year. I would have to pay for anymore help. I can’t pay and I am afraid I can’t do my job. There is no money. I am not working. I can’t. I am flooded with bills for co-pays for speech which I thought I didn’t have to pay. They say I do. I am appealing.
(I did get a letter of APOLOGY today from Them. But it is about the problem with approving speech therapy way back in June. Dr. S had said that it would work out. The letter is dated June 18th, but it arrived in August. Hmm. They “apologize for any inconvenience that I may have experienced with the Medical Management Department. The Director informed…me…that speech therapy services are reviewed and evaluated based upon the medical necessity throughout the course of treatment to ensure quality of care.” So I was right. I can get more speech therapy covered and paid for as MY DOCTOR says I need, to get better.
I feel a bit crazy. I mean, their big company fought me tooth and nail and made me feel like they either wanted me dead or I thought I was crazy to think I needed speech to get well. And now, that big company says sorry. I know the stress of this was not very healthy for me. I don’t really care anymore about them or me, but I know stress is bad. I have always heard that stress was bad for my Jean Granny when she had her stroke. I saw the same thing said on TV for people with strokes. But they must have meant old people with strokes. Stress is bad for them because they are weaker and feebler. I guess if you have a stroke at 30, stress is fine.
But I don’t think it is right. And what about those people in my hospital, the ones in my unit, who are elderly and had strokes? What about the people at “the Home,” who couldn’t speak up for themselves because of their stroke? What about them? They can’t fight for themselves. It is not right. I don’t know much, but I know that. I guess, in this time and place, stroke is better for old folks because we are expecting them to die sooner anyway. We say that they have lived a full life already. Somehow it is more acceptable? But I am not old. I can speak up for myself. And right now, I can’t find anything else I am supposed to be doing.
So what does the letter of apology from them do for me now? Not much. That was about then. This is now. The system seems to forget/ignore from one day to the next. And I know by now that it will be a very different story for physical therapy. I know it will be a fight. What am I fighting for?)
So I spend about an hour a day on the phone with them, the big company. I get transferred all over the place: Patient rights, Rehab Services, Consumer Affairs, Medical Pre-Approval, Authorization, Authorization reviewer, my hospital, my neurologist from heaven and my PCP. I keep really good notes. I have bought a 4 inch binder to keep all my records, bills, and notes in.
I guess fighting with them is my job right now. I am going to start going into the medical library at my hospital. There has to be something in there that would help downtown and them take better care of me, cheaper. Why the F*** did they save me if they aren’t letting me get better? Why put $1,000,000 in to save my swallow, but not a couple hundred so I can walk and talk without looking like Jabba the Hut? Why? Maybe that medical library has answers. No one else does.
To discuss back to work, speech troubles, bills and extending the PT services, I saw My Doctor today. I told her what was going on. I let her check me over. I showed her “the letter.” I brought the binder. She made me feel smart, sane and strong, for about a minute. She saw the face mess up. She’s going to work on getting me the speech and physical therapy services. That is good. I told her I can’t go back to work yet. I am not ready. She told me to think about getting trained for a different kind of work or filing for disability! (I can’t even process that. I know she said it. I was there. But I am 30 freakin years old. How can she be talking to me about another line of work, when I haven’t even paid a tenth of my loans to become a teacher? And disability?????????? At age 30???????? I can’t even go there. Seriously, this isn’t happening. Can’t someone fix me?)
And Downtown says that I am fine, so I should come back to work for the end of the month. I’d rather shoot for that option right now, even if it is not realistic. At least that relates to me before 4/4/03. It’s something.
I say that to myself. But, come on, I can’t even talk. How can this thing get up in front of 6 year olds and practice the A,B,C’s when I slur and sound stupid. This thing that I am right now, can’t be an example of learning the English language! Don’t they see that? And I can’t move easily or with stability today. I can’t stay awake and talking and thinking and running the classroom for all day! I know they said I don’t need speech anymore and I am fully independent. But really? I don’t even know what I’d do all day with the kids. I can’t clearly remember what I did or how I did it. I can’t seem to make my head focus on teacher stuff right now. But I have to try. This face freak thing came on fast. If I got help, maybe it would go away. I need time. My job right now is to buy some time. I just need time to breathe and figure things out. Everything is so cuckoo right now. I don’t know what to do. (I didn’t ask for this! Age 30 isn’t supposed to look like this! Why me? Please stop? Please go away?)
I did a good job on my speech and PT. I achieved goals in a short period of time that some seemed to think I would never achieve. I am good at that kind of work now. And it is not easy work either. But that is not my job anymore. And I don’t see what downtown sees in me. I don’t see Miss Scanlon, the first grade teacher, when I look in the mirror. She is not there. So what do I do now?
I need help with work. I can’t do it right now. My Doctor says that I should take a copy of my medical records and she would write a letter and I can take the lot downtown and show them what is going on. Check. Wait and see.
I reached out to my union. I know they don’t owe me anything, but I am scared and I don’t know what to do. My medical records say that what happened to me on April 3rd was a big, bad deal. I was very sick. I am still not stable. I don’t think this is what healthy looks like. But they want me to teach. Anyway, I called and talked to one of our leaders at the union. He had come to see me in the hospital. I loved how the nurses jumped around when his larger-than-life voice and broad swinging arms, rolled into my room. He had said then, that I was missed and that the city would take care of me. So I called him now and asked for his help. I need time. I need a break. (What if they fire me? What else can I do? I can’t do what I’m trained for. And I don’t want to do anything right now. What if I can’t stay in my apartment? It’s all I have. Who will take care of my babies when I go? Why can’t they just leave me alone.)
August 7th 2016
I had a really great, food day this week. (And yes, food makes my day.) I made rotisserie style chicken in the crockpot, swiss chard from Fran Farmer with lots of garlic, spelt grains and veggies and a creamy cabbage salad. I smelled the chicken cooking every time I came in the house during our busy day. And I drooled. And at supper, I didn’t eat. My belly was all over the place and food was not gonna settle it. I was a bit dizzy too. Ick! It has been a hot day, not the hottest we have had. It was a very humid day, up there with the stickiest of the summer. I was in AC much of the day, except for the 3 hours before supper. I had gotten up way early, and stayed up, but not really any worse than other days recently. I had lived a normal day, like the rest of the humans I saw today.
But I am not a normal human, whatever normal may be. After supper was cleared away, and after Tim had washed the last of the mountain of supper dishes, I saw the look on Tim’s face. He hadn’t said anything. I had said right before supper that I was a bit overheating, that’s all, to explain my snapping words and slip slopping, clumsy hands. He hadn’t pressed further. And I am grateful for the breathing space. Right after supper, he asked if I was nauseous. I told him that I was, and followed up with, “that’s the only reason I’d miss a meal, even if I wasn’t hungry, and especially if it was yummy chicken. Again, he didn’t push me. But he was there, near me, strong and securing, keeping me safe just by being there. I stayed near him while I tried to gain my equilibrium. Tim is my anchor.
But in the quiet of the cleaned up kitchen, fan on, and lights off, I saw his face. I think he was scared and confused. I saw the look in his eyes and took a deep breath. I had to find words that made sense of my behavior. I had to make him feel better. Lately I have talked with him and really become more aware of how big a role my stroke PLAYS in OUR LIFE. Strokes are big with a capital huge, scary, terrifying, life altering events, for you and your spouse, even when you are 13 years out, and even when you are in good, stable health. This is where I am at now in my recovery.
Therefore, Tim is also impacted by this phase in my recovery. He hadn’t pushed me to explain what was wrong, but that didn’t mean he wasn’t worried. I saw fear on his face. If I was very suddenly off my very tasty vittles, something was very wrong. I don’t want Tim to be afraid. This is new to me, to recognize my stroke impacting him, in the moment. (It is big growth, with a capital huge for me to be a little less self-centered. I am kinda proud of that.) Somehow, I had to make him feel safe and not scared, now.
A number of pieces of a very difficult, yet surprisingly simple puzzle fell into place as I looked into his eyes and began to talk.
- I told him I guess I hit my limit on heat and humidity this afternoon for no special reason. I felt like my head was wrapped in Saran Wrap. I was kind of dizzy, goofy and light headed. (He looked a bit more confused.)
- I told him that I can’t regulate my heat. (He nodded. He knows that.) I said that I had noticed during the afternoon, and asked him if he was ok, because he was sweating and a bit red faced. He was fine, of course. Healthy people sweat when it is hot on a Dog Day of August! But my whole right side can’t sense the heat. It tells the uncomfortable, hot and bothered, left side of my body not to feel so bleeping hot. Chill Out!- says the right to the left. So in my head, the message I get is that I am not as hot as I really am. (I asked Tim if this made sense. He said he heard what I was saying, but really couldn’t identify with what it meant.)
- I told him that if I really didn’t “feel” the hot sticky weather, then I wouldn’t drink extra water or go near a fan or get into air conditioning, or do anything to help what my body was experiencing. I was denying it. It wouldn’t change the reality, but that was what I was doing. I wasn’t listening to my body and doing what a normal person would do to feel better on a hot, disgusting day like today. And therefore I would feel worse than the smart person who had taken appropriate measures. I told him that as soon as I finished the big mug of seltzer beside me, I would definitely feel much better (He nodded and took a deeper breath.)
- (So I closed my mouth, closed my eyes and took a couple of deep and wonderful breaths.) I told him that I had finally stopped my normal mouth breathing and just taken a few great breaths. I felt better, clearer headed and relaxed a bit. I wasn’t nauseous. I told him that I had read a Dr. Mercola bit on the benefits of breathing through your nose. It had reminded me to make a concerted effort to do better in that area. I breathe way too much through my mouth because the spastic muscles on the left side of my face. Those wacky muscles that don’t work very well, sort of collapse my nose on that side and make it tough to breathe easy.
(I didn’t tell him this. But in the safety of that moment, I realized a truth about me. I try to be normal. I try really hard to be normal, for me. I have been breathing through my nose so much lately, that even though I don’t breathe very well, it is comfortable to me. It is known. It feels normal. I don’t feel freakish or disabled. I just feel winded and out of breath. In those walks around the block, I try to breathe through my nose. Every night, with my face throbbing in spasm, the ache keeping me from rest, I try to breathe through my nose. I practice. And then I want to cry.
The first few breaths through my nose are wonderful. I can feel my body relaxing and thanking me for a real dose of oxygen. And then it gets hard. I can actually feel the exact parts of my face that are f@#*ed up. I can feel a twinging of collapsing weak muscles under my left eye, near my nose. I can feel how different those pathetic, broken bits of my face are to the rest of the strong muscles I have. I hate that moment. I hate that feeling. In that moment, I guess I hate me. I am a fear ball again, back in 2003. I don’t work right. And in that moment, I don’t want to try. I just want to snap back to how I feel now, in 2016. I don’t want to be scared, feeling weak, and human.
But today I have to try. I am not back then. I am me, now. I survived and I thrived. I am strong. I can do this. I am safe. It will be hard. I won’t like it. And it might not get tons better. And yet, it might. I wouldn’t have this realization if I weren’t ready and able to try. A survivor like me, has to try today, because we can and we do. Our standards, our expectations are higher when we are 13 years out. Beyond our fear and anger from STROKE, in our hearts we KNOW we are stronger than most. Strokes are not for sissies. Survivors are blessed with a backbone and resilience that most cannot imagine. I know this about us. I can’t explain it. But I know it. And today, I have to try.)
What I do tell Tim, is that in my frustration and disgust with myself, I avoid the tough-for-me-way-of- breathing and practice needed to make it better and switch to mouth breathing. I told him that on our walks lately I had tried to breathe only through my nose for the whole first block. I was focused on doing better with nose breathing, because I needed to. But after a block of hard work, I give up and switch to mouth breathing, my nose runs a snot river and I huff and puff loudly, through the neighborhood. Lovely. I told him that today, in an effort to be “normal,” I had taken the easy way out, as usual. I chose to breathe heavy through my mouth all afternoon. And my result was the same as any idiot who breathes that way. I didn’t get enough oxygen and made myself sicker and sicker. (He smiled. I asked him if what I was saying made sense. He said he was listening and wanted to understand more. I smiled a bit then too. I don’t know why he puts up with a whack-a-doodle like me, and sincerely wants to understand me. But, boy am I grateful.)
- I pet Ciro, lying on the butcher block enjoying the breeze from the fan. I told Ciro that I needed to be more like a cat and less like a dog. (Tim made a face and asked why he needed to be like Ciro. Isn’t it crazy? It was so clear to me, in my head. And yet in real life, what he heard was something completely different and cuckoo. I laughed and explained, while I wrapped Ciro up in a gentle hug.
- I told him that breathing like Gus wasn’t good. Dogs are mouth breathers, aren’t they? Gus had just come up from his last trip outside for the night. As he waited in the kitchen for Jason to give him his bedtime cookie, he mouth breathed. (And drooled a bit, Goddog love him.) He was panting and drooling a bit, breathing heavy with his mouth open, as all dogs do. And Ciro, like a respectable cat, sat smugly and serenely breathed through his perfect pink-heart shaped nose. I needed to be more like Ciro. A few cat-like, breaths through my nose, imitating my dear, old beloved, and I was feeling much better. (Now Tim smiled, big, for real.)
All this thought, reflection, and figuring out myself, really messes me up. I am totally raw and on edge. I keep the Grinch’s transformation in mind: his heart growing 3 sizes and feeling, feelings for the first time. I think of the Monster at The End of this Book, on of my all time favorites!
I grew up with Sesame Street, watching it everyday. Grover rocks! (But if we are being honest, my true love is Cookie Monster. I called him “Cookie Maja.” Who else best represents Rachel? Even at that age, I knew. ) I ordered my Dad to read it to me over and over as a kid, and then read and reread it to myself as I grew. I never tire of the message. Grover is the monster he is so afraid of. It is just furry, lovable himself at end of the day. At the end of the day, it is just lovable me.
My Buddhist Reiki Master, Nancy taught me that IF I really touch the pain, it will disappear. I believe that. I want that. But it hurts. I hurt when I stretch and grow. Ick. And what do I do when I hurt? What do I do to heal? I bake. (I highly recommend a piece of the cake that follows, warm out of the oven, paired with the reading of the Monster at the End of this Book. A satisfying and comforting pairing.) My New England roots is where I find that comfort. Yankee Magazine plays a big part in that relationship. Gramma Harriet used to get the magazine and I loved reading it when I lived with her. One year, they had a cover that my Gramma loved. It was a sewing sampler and you could mail away and get a kit to make your own. Gramma Harriet did just that. And she gave it to me.
It has hung in my kitchen since. I love it, love Gramma Harriet, love Yankee Ingenuity, and Yankee Magazine. I friended it on Facebook. I love seeing the posts everyday. And my Dad makes sure the beloved paper edition keeps coming. The July/August magazine has great recipes celebrating our blueberries.
(I remember one summer when Gramma Harriet and I went to Tony Andrew’s farm down the road from her in Falmouth. We picked a bunch of blueberries. She was good. She made blueberry muffins and ate lots of fresh ripe berries by the handful. I wanted to bake, more sweetly. I had my Great Aunt’s recipe for Blueberry Slump. (Gramma Harriet’s sister) My Cuzzin said it was the best. So of course, I found a different recipe for blueberry slump and made that. I invited Cuzzin over and we all ate. Cuzzin and G.H. agreed that Lou’s recipe was better, different and better. My slump was good, but not the comfort we were craving. Later that week, Cuzzin Deb invited me and G.H. over for the real deal! And I’m telling ya, it was awesome. Here is that family fave, as I learned the harder way and my good, but not great recipe.
(Ciro makes a good recipe holder, in a pinch.)
For guaranteed healing from this 2016 angst moment, or month, I went straight to the pages of my Yankee Magazine to find comfort, and found it. The smell of molassesy sweetness makes me relax and practically purr. It’s a seriously old tradition of sugar. Its like a hug for the whole house. That is what I need right now.
Making the Blueberry Molasses Cake made me relax and smile, the house was happy, Jason gave it a thumbs up, Jenny and I credit a slice of it with coffee, for our success on the NY Times Crossword this week, and it is just the sweet to bring for Fran Farmer this week. I love a happy ending.