July 24th, 2003 & 2016

July (Iced) Coffee Tawpic for the day. Discuss

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These visual/picture/summarizing/things are all over the place. And I am drawn to them: the combination of information, color and image. They are easy for me to read, absorb and retain the information. And some of them are so spot on. Some really manage to pull together a great message encapsulated in one frame that explains so much of my story. I share them on social media and I refer to them constantly when I talk. The name I was using for this quick fix was “infograph.” But that didn’t seem quite right when I said it out loud. So I googled it. The proper term is :

in·fo·graph·ic infōˈɡrafik/ noun/ a visual image such as a chart or diagram used to represent information or data. “a good infographic is worth a thousand words”

There it is.   I am currently obsessed with infographics. this one, hit me spot on. It starts in the top left hand corner, with the NSA icon. I like that it is in blue and I like that it shows a head. Stroke is a “brain attack,” and this image makes that clear. While stroke is included in heart disease, it is a highly time sensitive event centering in the brain. I like that.

The title “EFFECTS of STROKE” is one definition of me. Don’t misunderstand me. I am NOT DEFINED by my STROKE. My identity, who I am, what I am capable of now and what is possible in the future is not etched in stone or dictated by my stroke. That is way too limiting and rigid. I don’t roll that way, anymore. But, I am a stroke survivor and therefore each day, I live with the effects. The title of this infographic speaks right to me and connects me with a community of fellow survivors. It reduces my feeling of uniqueness to rubble. I like that.

I also identify with other groups: Moms, New Englanders, Crocheters, Bakers, Teachers, Gardeners, My political party, my spirituality, and Red Sox fans. These are only the ones on the tip of my tongue right now. I know there are so many others kinds of people I identify with, or feel membership of their group or relate to characteristics of them as my own.

My membership in the Stroke group is very different from the others. You see, I know other Moms. They are all around me and always have been. I have access daily to so many moms and use them, believe me, as a lifeline in my own “adventures in momhood.” The ways of moms are not a mystery to me and if one is, I can ask them to decode for me. I live in New England and so many ancestors of mine, before me have called this area, home for several hundred years. New England is in my genes.

I crochet with friends on a regular basis. Ditto for bakers, gardeners, like minded political peeps, spiritually simpatico friends and Red Sox fans. BUT Stroke, not so much. Stroke was only familiar to me as something that happened to my Jean Granny, when she was elderly. I had no resources for how to live with effects of stroke, my stroke, when I was 30 years old or any day going forward that I might survive. For this new frontier, I needed tools. I didn’t have any answers and questions keep coming. To this day, new and changing effects of stroke impact my life. In the early days, I was drowning in the quicksand of my own diseased isolation. I needed help. But I didn’t accept “stroke” as a label that applied to me, then. I didn’t want to believe that stroke was my truth. Denial didn’t change the facts.

Even when I had accepted and made peace with my stroke, I didn’t see people like me everyday, any day to be honest. I saw no one like me at my hospital. I saw no young survivors on TV. F.A.S.T was not yet a campaign for stroke awareness. https://www.bing.com/videos/search?q=Fast+Stroke+Warning+Signs&&view=detail&mid=DB98E86DD901207A504ADB98E86DD901207A504A&FORM=VRDGAR

No one seemed to be talking about living a high quality of life post stroke. I saw only references to very disabled old people with strokes. When Jean Granny passed away three years after my stroke, my connection to stroke left. My relationship with a huge part of me, died too. Not good. I didn’t know, what I didn’t know.

The internet and social media are actually a great resource for me in that area. I reached out by email to the American Heart and Stroke Association, quietly, shyly and slowly and found a new world, full of possibility. At the local, state, national and even international level, there is a powerful community of people just like me.

Owning my membership in the Stroke Community is a life line. Pursuing the relationship with this group opens doors to a better life, every day. In college, I was a psychology major. I particularly loved social psychology. We learned about how groups function in human society. Our admission that we are the member of one group gives us access to the security and support of that group. It gives us identity. This seems a kind of built in human functioning. I was fascinated then by consciously thinking about what groups I thought I was in vs. what groups I wanted to be in. This area of thought could be certainly encompass mind games. I was intrigued by that.

Are there big parts of you that seem a bit foreign and need decoding? What titles get your attention? What labels, for lack of a better term, do you identify with? Which infographics do you see, or would you like to see, that make you say “THAT’S ME?”

Within this particular infographic, I am drawn to the blue person standing in the center. I am one of 6.8 million adult stroke survivors living in our country. We number in the millions. I am not unique. I am not that rare. There are 6.8 million people who know what it feels like to live with the effects of stroke. Just that fact makes me breathe easier. It was not a personal attack from God that I “suffered” a stroke. Instead of “why me have a stroke? Or Poor Poor Me, I had a stroke,” this numbers tells me “Why NOT me have a stroke, just like the other 6.8 million survivors?” I am not alone. I like that. What group do you identify with? Have you been a part of the group your whole life, or is it a newer association? What is your community?

To the left of the blue head it says “Stroke in the United States.” The fact in that box has significance way beyond my own selfish little being, to all Americans, full stop. Stroke is a big player in the U.S. We are not dying from our strokes as much as we used to. I didn’t. I like that, now. But Strokes create serious, long-term disabilities. We head the charts for our country in this category. I have life long effects from my stroke. And they are serious, to me and those I love, live and work with. The disabilities don’t all get better over time. They effect everyday life and they don’t go away. They are with me everyday for the rest of my life, and I am blessed by each day. My disabilities are tiny compared to so many stroke survivors that I know, knew and will never meet. I know this. I knew this even 13 years ago. In the hospital, I learned fast how savage stroke is and how lucky I had been. I have to speak for this group of stroke survivors, because they can’t. And this is definitely an anger trigger for me. I own it. 80% of strokes are preventable. They never have to happen. We have to do better for the 80%. The cost of stroke, financially and in human terms, is way too high. PREVENT.PREVENT. PREVENT

But back to reality. Focus Rachel! My stroke happened and this is about the effects of stroke. Today, I have to live life on life’s terms, and I need help. Are there groups that you might be a part of that have specific statistical significance? Does membership in a particular group, by virtue of birth or circumstance create conditions in your life that you NEED to be aware of? Could this awareness bring you to a happier and/or healthier place?

The green box on the bottom left hand side of the infographic talks about THE QUALITY OF LIFE EFFECTS from stroke. I consider my quality of life today. I am concerned with others’ quality of life too. I am not sure this was a big issue for me before my stroke. I had heard the words. But they seemed to apply to old or sick people who were housebound or lived in a home. I wasn’t very conscious of my part in my own health, how I could help those around me live a better life, who could help me if I wasn’t doing so great, or how much I would need to change if something major happened. Hmmmm.

The infographic says that 80 percent of stroke survivors worry about our financial future. Darn straight! I have certainly been there, and can be again. Surviving a stroke is expensive. Trying to take care of yourself and treating the effects of stroke is often cost prohibitive. I don’t think our society is quite ready for so many people to have strokes younger, and survive. The model of care for stroke survivors is not centered on really, long term help to our population. Our model of care and careers has to change. We are here now. We want to be a part of society and pull our weight. But we need help.

I have to make choices about what treatments I get and how often. I benefit from Botox, but it costs me way too much money. No one should have to make that choice. I worried a lot more in the years right after my stroke. I worried about everything then. My quality of life was so radically altered in the blink of an eye. The future was tenuous at best. I was a walking fear ball. It didn’t help the situation, but I understand and have more compassion for the Rachel that lived through that.

I have retrained my brain against worrying. Worrying is futile. It doesn’t change reality. It certainly does stifle my ability to problem solve and generate new ideas. My friend said to me, “worry is another form of control.” I wish I could control LIFE. I wish I was that powerful. But stroke has taught me different. I can only live in the present. Worrying is just a polite way of trying to control the future, for me. So I live in today. I do plan for the future financially. I plan to live a long life within my means, providing for the family that I am blessed to have. I try to save. But I admit, it’s tough. We don’t have savings. My son doesn’t have a college fund. I am still paying my student loan that I got to be a teacher. The loan went into default when I had my stroke. Since then I have paid it off 3 times over, but they still say I owe. So I pay. I know I am not alone in this money mire.

Some of my stroke related expenses now are paid, before saving for Jason’s college. I have to take care of the bills of today. But I believe that we are making a good life for Jason. I have faith that our family will continue to be successful, in terms of health and happiness. I believe our financial future, will be healthy too. Tim and I do what we can to be happy and healthy in all our affairs, financial included. I do worry, at times. But it never helps. Do you worry? Does it help? How do you handle financial uncertainty?

RETURN to Work: I did return to work. The statistic says that only half of stroke survivors return to work. Do they mean that they returned to the job they had before the stroke? Or do they mean that only half of us are able to work at all after stroke? I don’t know. I know that it took me a while to be able to go back. And I went back before I was ready. I had to. And I went back utterly changed from who I was before my stroke. It was both humbling and humiliating to feel so like such an infant at work. My comfort level with myself and my professional skills were shot. I spent much of the time, trying not to worry about having another stroke. I knew I was supposed to focus on the children. I knew I was there to keep them safe and teach them. But I wasn’t safe. It was tough.

I learned to love teaching again, as the new Rachel. It took time and a school community that loved me and believed in me. I need help. I get it. I have an assistant who makes it possible to teach. I have technology that helps me write quickly and clearly. And I am worth the investment today. I have had tough times. I am a survivor. Students respond to that. Many of my kids have had a hard childhood, if you can call it that. It is rough for them on so many levels. But they come to school. They show up and they learn. They are my heroes and I tell them that.

My kids know that I have had a hard time. They know I am not full of cr** when I say that I understand. I tell them that in my room, I am the grown up and I will keep them safe. I got this. And they believe me. They are freed to be children for the 7 hours of school. I am able to incorporate my life experience into improving myself as a teacher. That is a gift.

But I am lucky. I was able to make this transition. I will teach as long as I love it and am good at it. My “work” is to be useful, help people, stay active, and keep moving. If my “work” needs to be other than teaching, that will become clear over time. I have choices. Many stroke survivors are not so lucky. I know this.

Also in the Quality of Life box, is driving and safety. I was able to return to driving within months of my stroke. I was very lucky. I knew it then. I know it now. I value the independence and freedom I have because I can drive after my stroke. I own a car and my license has no restrictions on it. That is a major gift. It is a gift that most stroke survivors don’t have.

And my safety is a gift too. The PT really helped me regain stability and balance. I have not had the kind of falls that many experience. I do live most days with a different “normal” in terms of strength, sensation, balance and coordination. Some days are better than others. Some are worse. Over time, I learn more about my body and what it likes and doesn’t like. My body is not subtle with me. It talks louder and louder until I listen. Does your body talk to you?

I usually overdo it physically. I believe, most survivors overdo it in an effort to be NORMAL and get the most out of life. We lost out on so much while recovering and we are aware that the future is not guaranteed. No PRESSURE! Ha. There are days when my balance and coordination is WAY off. I have to be smart and sensible those days. I need help those days.

I do get wicked scared in the winter, when the first icy day comes. A fall on the ice scares the cr** out of me. I am NOT afraid of the pain. I think most survivors are pros at dealing with pain. That’s not it. I don’t want to be out of commission. I don’t want to lose my independence. I don’t want to miss anything being laid up with a fall. I don’t want to be a burden to anyone. More than that, I WANT to live every single day I have, as able bodied as I am now.

So, on the icy days, I walk as my Gramma Harriet did. I remember. She would go out, but taking strong careful steps with her head held high.  She told me that if she was too scared, her body would get so tense and she would fall for sure. Gramma Harriet did have a couple of real good falls. She had to look at why they happened and she worked to do better. But she never stopped walking. She never stared at her feet while walking. Gramma Harriet told me that she kept her head up to meet life head on. She wanted to say hello to people’s faces, not their shoes.  She was smart and sensible.  I remember this. I cannot live in fear. I can be smart and sensible and life fully today.

From what I hear from my NON-Stroke friends and family, worrying about finances is pretty universal. It seems that the people I know worry about money.  Money is tight and the future is not secure. Our generation is in a different position than our parents.  I have had the same job for my adult life. That is good for me, today. Most of my friends have frequently changed jobs and often changed careers entirely. What a gift to be able to do new things and have different experiences. Driving a car is something that changes with life experience. At some point in our lives, if we are lucky enough to get old, we are faced with the day we have to stop driving. My months not driving after my stroke, really make me appreciate every time I get in the driver’s seat of the car today.

And safety. That too is something society often associates with being elderly and feeble. I don’t know that I have to be feeble when I age. (I have been feeble bodied at age 30.) How could I know what the future holds? I see a lot of folks working so hard to deny their fear of aging or being stuck in that fear, that they lose life today.

Stroke teaches me to live in Today. Stroke has taught me not to worry about that day in the future. Do you worry about that? How much time and energy is lost to you by worrying about the future that hasn’t happened yet? Could you be missing out on a gift of today because your energy is on the future? Aging, driving, money worries and safety seem like facts of life. But how we handle the facts, dictates our quality of life. (I absolutely do know that for many stroke survivors, the financial future is much bleaker than mine. But will worrying help them or change things? Are there are actions that might help?)

Each box on this infographic is connected to the next. The big, blue box on the right, PHYSICAL EFFECTS, is certainly connected to all the others. Stroke teaches me that. My mind, body and spirit are connected. They effect each other and stroke effected each of them. And they are all parts of me. I had some significant vision issues right after my stroke. I remember it most in the ICU. I remember how blurry the staff looked through the crystal clear glass wall. The TV screen in my room was right in front of me, but seemed far away and constantly wavering. Mercifully, that effect dissipated. I do have some vision issues at times right now, but it seems to happen most when I am over overtired. Sometimes I have trouble reading the newspaper. I worry, for a bit, when it happens. My default setting is that the vision trouble means that I am getting ready to have another stroke. I know it is irrational. I know it is not true. I do deep breathing and Reiki, I pray and it passes. It takes time. I look around me and realize that it might just be vision issues related to the luxury I have of getting older. My eyes are aging. I am lucky to have that problem. Not everyone does.

Sleep is one of the bigger physical effects of my stroke, or rather lack of sleep. Lying flat is not really my favorite position anymore. It goes right back to losing my swallow. Every drip of spit, I had to suction out of my mouth or I would aspirate and die. They told me at night, as long as I slept on a small incline, I would be fine. I guess you make less spit at night and it just drools out your mouth while you sleep if you can’t swallow. I didn’t believe them. I had no faith. So sleep was not my friend. There was nothing restful about the idea that I would drown in my own spit. Even after I regained my swallow, I lacked faith that I would make it through the night.

Then and now, breathing through my nose, at any position can be a real bugger, most of the time. I have facial pain and messed up nerves in my face. They are worse at night. I don’t thermoregulate my heat in my body, so temperature plays a factor in my sleep. Blankets on. Blankets off. Window open. Heat on…

I fall asleep pretty easily, many days. OK! OK! Be Real Rachel! Some days it takes me a while to fall asleep, but that is because my head is in overdrive. I am thinking too much and cannot turn off my brain. Something tells me this is NOT stroke related. Does your brain resist turning off at night? Do your thoughts about the past or future, steal your sleep?

A good night of sleep for me is when I get a real 4 hour clip of uninterrupted sleep. Dreamy!!!! It is few and far between that it happens. Oh well. I enjoy the rest I get. I can do more Reiki and other things that will improve my sleep. And tonight is always a clean slate for a better night’s sleep.

Most nights I am up every hour or so. (My older boy, Ciro is rewarded by my silly sleep cycle. His little old body burns fuel fast. He is hungry every hour pretty much. So I feed him special, whenever I get up in the night. He appreciates it. His purrs are worth it, for me. And the house is so peaceful and cozy at night. I love to look and smile at my gifts. In those quiet moments, since I am up anyway and no one else is, I can really appreciate how lucky I am. I get kind of smug at 2am, strutting around MY house, feeling healthy and strong, watching my loved one’s sleep and snuggling with the 4 leggeds. I look out the windows or venture onto the porch catch a glimpse of our skunk or hear the first birds in the morning. These moments are gifts.

I do realize that sleep is a lot more important to my health than it may seem. So I am focused on catching sleep when I can, and improving the quality and quantity of my sleep. http://www.braininjury-explanation.com/consequences/invisible-consequences/neurofatigue   This is a new thing for me to learn about. A Stroke group on Face Book shared it and the information hit me hard. It spoke right to me. The visuals with the car batteries are especially effective infographics to me. It illustrated for me and those I shared it with, how different it is for me when I wake up in the morning than most people. A few years ago I wouldn’t have looked at a page about BRAIN INJURY. It was not a label I wanted to touch with a 10 foot pole. Now I don’t mind. Reading this article helps me, help myself. It makes me less of a mystery to myself. It is a good thing. I like that.

I am one of the 74% percent of stroke survivors that experience pain. As I have said, the muscles on the left side of my face hurt, pretty much always. But I am actually fine with it now. I do what I can to help. If I massaged more and got back into speech therapy, it would help. I know that. Are you aware of the pain in you? What does it tell you?

I don’t really have the Hemiparesis. I have full use of both sides of my body. I am grateful for this. I do have that weird thing where I feel no pain, heat or cold on the entire right side of my body, head to toe. I also can’t regulate my body heat on that side, so seasonal changes are quite the adventure for me. Getting overheated is very stressful on my body, as is getting wicked cold. It takes a long time for me to get back to normal. I do feel like a bit of an oddball or outsider with “normal” folk, because I have to do more than have a cup of hot cocoa after I play in the snow. I do/can feel separated from others if I dwell on it.

I think this effect is related to the location of my stroke, brain stem. Different Strokes (effects) for different folks, I guess! I have gotten used to that too. I retrain myself to check hot or cold things with my left hand. I learned that the hard way with pan handles on the stove and scalding water in the shower. I bundle up when it is starting to get cold, instead of waiting til I am frozen and sick for two days with BONE cold. (Bone cold means that my bones are so cold to me that they feel like they could snap like a frozen twig. I have to get in a long hot shower, then drink endless hot teas, with 5 layers on under 5 quilts before I get warm, a few days later. I try to prevent that these days. I know it will happen and I know I don’t like it, so I try to help myself avoid it.)

The lack of pain thing on the right side is a challenge that is MOI too. I don’t feel it. So if I stub my toe, cut myself shaving, get hit with a stray baseball of my son’s, crash into something as I careen through my day or carry a bag on that side that is really much too heavy, I don’t really know it happened. It certainly doesn’t slow me down, because I rarely know it happened. I know that most people stop and check themselves if they are injured. Eh….. As long as I don’t get blood on the carpet, keep moving. I have less tactile sensation on the right side, so I have to be aware of that too.

But back to the pain thingy, I think I have a significant example of this. I was lucky and blessed to get pregnant 5 years after my stroke. What a miracle! My hospital sent me across the city to a practice for high risk pregnancy because of my stroke. I got terrific care. About 5 months in, I started getting overloaded with fluid. It was icky. The docs said I had to wear compression pantyhose. Oh joy. That was so much fun. It was like getting the filling back inside a sausage casing. And I was the filling. And there was always way too much filling to possibly fit into the casing. I was SAUSAGE MOMMA. But it worked.

Then the ultrasound found a problem with Jason’s heart. We had to go in for 3-D ultrasounds, 3 times a week to see if he was doing ok. If he wasn’t, they would take him right then. And every day held on inside me, made his health when he came outside better. He ended up being only 5 weeks early. And even then, I was the problem actually. I really started blowing up with fluid. The docs kept a close eye on me. On January 21st, I brought them the “urine” I had collected for the night. They had sent me home with one jug and I returned with their jug, plus two extra gallons. They admitted me right away. I was septic, toxic, and all around wicked sick. The nurse had me hooked up to a monitor. It was going crazy with really big spikes and lots of activity. The nurse told me those spikes were contractions, mine. She told me to focus on the spikes and pay attention to what my body was feeling. I did. And I felt them. I felt someone put my back and guts in a vice grip. Holy Cr** that hurt. The nurse said that I had probably been in labor for quite a while by then.

But contractions hurt and when my body hurts, the stroke effects can powerfully take over. My left side felt the contraction and it hurt. Bad. So the right side told the left side to follow its lead. To avoid pain, the left side numbed up and ignored the pain just like the right side always does. It was very effective and done without my consent. My body can do that. I am impressed and horrified. I didn’t know I was in labor!!!!!!!!! That is not normal or healthy.

Everything worked out for me and Jason, but it was a lesson I hope I learned. My body and mind will play tricks on me. I need to pay better attention to what my body is saying. And I can. When I take the time for myself, practice Reiki, and make space I can feel more on the right side. I can feel the sharp pain as I cut myself chopping cabbage trying to make coleslaw. And the pain is a good thing, right? The two sides of me are more integrated when I practice. The whole me is more healthy. Just because I can avoid pain, doesn’t mean I should.

I certainly am one of the 70% of stroke survivors with increased fatigue. It was absolutely brutal the first year after the stroke. It came in great waves and totally knocked me down. An avalanche of exhaustion would hit after the slightest exertion during those early years. It was one of the things that made going back to work so difficult, if not impossible. I felt so helpless, weak, and useless as a result.   Fatigue is one of those “invisible” effects. But just because you can’t see it, doesn’t mean it is not totally real. I deal with it, in varying degrees every day. The new article on neurofatigue really helps me today. I am looking at my fatigue through a new lens. I am trying new things to help. I am more gentle, (for 5 minutes) with myself when I admit that I am tired and need a break.

And I am really focusing on improving my sleep to possibly reduce my fatigue. Life is exhausting if you really live each day. There is so much we GET to do and experience every single day. Life can be equally energizing, I think. I get the biggest rush from some of the most boring daily activities that I GET to do today: feeding the birds, the first cup of coffee, making a good lunch for Jason, seeing the rose bush doing better after I fed, mulched and watered it, taking Gus for a walk around the block and saying hello to my neighbors. All of these gifts of daily living fill my tank with love, joy and hope. It is that simple. (I am working on keeping it that simple.) Do the everyday gifts of your life fill your tank or are your daily “chores” dragging you down and making you wish for something else? Are you exhausted from living life to its’ fullest or totally sucked dry by your reaction to life?

About half of all stroke survivors have problems with control of their bladder/bowels. It is certainly not a glamorous effect. I can identify with this trouble. Before my stroke, I believed that this issue was for infants who hadn’t been potty trained yet or elderly, and it was expected then. Now I know that it is something to be lived with. Some days our body is our friend and some days, we feel like an infant or octogenarian needing diapers.

I will take this trouble any day over the dysphagia I had right after my stroke. Losing any and all swallow was HUGE with a capital Big, for me. I couldn’t even swallow my spit. Gross…and utterly terrifying. Forget feeling like a baby or a senior, I didn’t even feel human when I couldn’t eat. I couldn’t break bread. I wasn’t alive. I was a robot, I believed. And I lived that belief. It was the story I told myself and it made me as sick as any effect of stroke. I don’t have that story in my life now. But I don’t forget it. I respect it. I know what these effects can do to people, way beyond an affected and broken body part. It is a powerful, humbling teacher.

Spasticity, I deal with that every day. I don’t have the claw hand that most people recognize as a stroke effect. I have spastic muscles in the left side of my face and neck. The breathing issues stemming from spasticity can be tough. But I do pretty good with that and the pain.   Honestly, the most difficult part of my spasticity comes out of ego and vanity. When the muscles are in spasm, my face looks contorted, my nose runs, I might drool, my speech becomes so difficult to make, it slows way down and I sound drunk. I feel ugly. I am embarrassed by myself and I want to hide. I don’t like myself. And all because of the spastic muscles in my face.

It’s not like I ever prided myself on my looks. I never have. I never was noticed for being very good looking or beautiful. I was average. But the spasticity hits my ego right down to barfalicious, hideous, lock-me-up, ugly girl. I have to get right sized and reality-based when the muscles lock up. Yes, I look weird. Yes, you can’t fix it. Yes, it is not pretty. Yes, it makes you uncomfortable. But what do I care what you think anyway? I honestly don’t really care today? I am a survivor. I am proud of my strength. My spasticity will calm down and all you will see, I hope, is my heart shining through. If you are hung up on my appearance, made uncomfortable by me, that’s on you. What makes you feel pretty? When are you ugly? Am I the only one still holding on to vanity over health?

The last physical effect is the foot drop. This one is not huge in my life, but certainly comes out when I am fatigued. My foot becomes more like a flipper to haul from behind, than my usual size nine foot. I have fallen once, walking Jason home from Kindergarten one day, when I was surprised by the foot drop. I had a good tumble, skinned my knee, rolled my ankle and then popped up and told Jason to close his mouth and keep walking. I was fine.   (In my head, I was terrified by the betrayal of my body on me. Here I was, walking my son home from school like a normal, good, mom and I fell. I felt so vulnerable and weak. I was momentarily paralyzed by the immediate rush of terror and fear. Had the fall hurt my neck, my artery, was I going to stroke out? The thoughts came to my head. My throat filled with tears and anger.

I looked up at Jason as I sat on the ground. He asked if I was ok because he falls all the time too. Did I need a bandaid was his question. His concern was just the bandaid I needed. I got up and moved on. I was very fatigued that day, that week and ignoring it to be a good mom, daughter, wife and teacher. My body gave me a wake-up call with the drop foot. It comes and goes now. I haven’t fallen since, but almost, many times. I make a point to think about how I move my feet (heel, toe, heel, toe) and where they are landing. You might not have to be conscious of walking. But I do. And it helps.

Everyone does fall, sometimes, as they walk through life. Falling is part of being human. And Jason reminded me of that when I fell. Letting him help me get up off the ground was big for me. Accepting help is part of my humanity. And I am screwed if I forget that. Getting back up and walking forward is huge for me. Taking confident strides heals me. Resting at home and admitting my weakness, is humbling and part of my human story.

Are you aware of the potential healing inside your own body? Do you have physical things going on in you? Do you ignore them? Or do you focus too much on the physical pain and problems? Either extreme presents a challenge to someone seeking balance. Are you aware of your physical self? Do you give yourself what you need? Are you making yourself sicker or healthier?

There is a small burgundy box in the bottom right corner of the infographic, about PEDIATRIC STROKE. This is a sad and scary box for me. My Achilles heel is hurt kids or animals. I rail against it and fight to protect them. But I am powerless most of the time. Pediatric Stroke hits babies in the womb, infants, toddlers and teens. Brain cells in developing brains are killed and seizures, epilepsy and cerebral palsy can result. The rock star survivor in this category that I am proud to know, had her stroke at age 14. She couldn’t walk or play for months. Now she can. And she does. One year of college is under her belt now.  She is amazing, and beautiful and inspiring. She is a hero. Remember, stroke is not personal. There is no answer to the question “why or how could a child have a stroke?” The alternative questions I choose today are “why not a child have a stroke? How can we prevent more strokes? How can we help pediatric stroke survivors thrive?

The orange box on the left side gets me the most. The orange box is about the Cognitive/Emotional effects of stroke. Yup, thinking and feeling, my favorites. NOT! (can you hear my sarcasm.)

Yup,  I have had memory problems. I didn’t get lost anywhere, except inside my own mind. There were tasks that had multiple steps and I had a really hard time being successful.   I used to love doing crossword puzzles. For 6 or 7 years before my stroke, I tackled the puzzles almost every day. I was really good on the puzzles in my local paper. I could do them, 7 days a week in ink, I might add.  When I had the slightly tougher Boston Globe puzzles, I did ok too. The penultimate crossword puzzles have to be in the New York Times, particularly on Sunday. I tried my hand at these puzzles too. I got a new atlas that helped. When I got a corner of the Times done, I felt victorious and wicked smaht.  But after my stroke, not so much. I couldn’t retrieve any of the information that I knew was still up there, to plug in a puzzle. Everything on the puzzle grid seemed random, disconnected and left me beyond frustrated. No, let’s be honest. I felt stupid.

Somewhere along the line, I remembered that Gramma Harriet had gotten me into the crosswords, when she was 70+. She would sit for a bit everyday in her recliner. There was a clipboard in a basket to the left of her chair. On the clipboard was a crossword puzzle. I would sit and listen as she read a clue, paused or without hesitation, marked her answer down. Sometimes I would help. It felt really good to fill in those squares. I remember that Gramma Harriet made a point, repeatedly, to tell me that she did the puzzles to “keep her mind sharp.” She had read in AARP that you have to exercise your mind or it will lose its’ ability. She wanted to keep her independence and therefore had to do her mind exercises every day. And she did, and she was. The memory of her story, her puzzles, that clipboard and the time with her, was in my Good Memory Department. One day it came back to me, and I thought I should do what she did and try to get sharp and stay sharp. I got back into the crosswords and certainly improved to be able to do SOME of a puzzle, SOMETIMES. Tim is really good at the puzzles. He goes after them in pen! I try to be brave and put my 2 cents in, but he is quick to fill the whole thing in. I know that I have retrained my brain and healed beyond what I believed was possible. But I am healthier than I realized. Let’s be honest, an event of last week made me feel positively intellectual.

Jason and I went off to Wessyfoo for our weekly, escape the heat-enjoy the yard-and spend time with my family-because I need to- trip. Jason lured my uncle off to the golf course to practice putting, of course. I followed my aunt, with coffee, out to the gazebo. She had the paper and a pencil. Everyday she does the local paper’s crossword, with coffee in the morning. I had forgotten she did this. I love it, and her. But this was not the local puzzle. This was the New York Times.

My aunt said that she is good at the NYT’s puzzles on Monday through Wednesday! Wow! They get harder each day, culminating in the Sunday puzzle. I was impressed and going to content myself with sitting, relaxing, admiring the yard and drinking coffee, while she battled The Times.   My aunt had other ideas. Our two heads were going to be better than just her head and we were to tackle the puzzle together. Yikes. I tried to hide my nervousness.

We pulled our chairs together, so we could both see and read the clues. She began calling out clues and rapidly filling in great answers. I was amazed at her. This was the New York Times for goodness sake, and she was whizzing along! I leaned in, intrigued with her success. And sure enough, I was needed for this puzzle. And I helped with this puzzle. I figured out the theme of the puzzle to be baseball. I saw this thread in the clues. That was cool. And I knew some of the modern lingo-isms that were not in my aunt’s arena. I credit my students and Jason with any current stuff I know. I knew that “a term describing really important and significant events” was EPIC, of course. Jason says that all the time and I know what he means when he says it. I did it. I was doing the Times’ puzzle. We did it. As the “mens” got home from golf, my aunt and I completed the entire puzzle. I mean we filled in the whole darn thing and I think the answers were actually correct, not just jammed in there because they fit. Yee HAW! What a rush! Days later, I am still impressed! It is good to realize growth in myself. I like that.

(Reading remains tough for me. I don’t have the endurance and focus for long written text that I did before my stroke. This is frustrating in my line of work and embarrassing for me when family and friends engage in conversations about books and I sit quiet, knowing that I have nothing to offer. I respect this challenge. I appreciate this stroke effect. I am open to other ways of “reading.” And I try to expand my ability on a regular basis.)

I never had the pseudobulbar effect. I am grateful that there are PSA’s on TV about this. Danny Glover is making people aware and not ashamed of this effect.

https://www.ispot.tv/ad/7XH_/pba-facts-learn-more-featuring-danny-glover

I certainly had depression as an effect of my stroke, for years, severe, isolating, sad, and paralyzing. (I was depressed before my stroke too. I had been in and out of “therapy” since I was 7 years old and had been on medication as an adult. The two experiences of depression for me are different, but related. Neither applies to me now.) Stroke changes brain functioning. That is depressing. Stroke changed me, totally without my permission. That is depressing. Stroke made me face my own weakness, helplessness, frailty and mortality. That is depressing. And I was depressed.

Some of the depression was certainly related to the stroke’s impact on my brain. I don’t understand the chemistry of it, but I am sure my brain chemicals were whacked out and messed up. I also attribute a major portion of the depression to the message our society gives us. We are told that we will “get back to who we were before our stroke.”   We who have strokes are told that we are “going to be fine. We are ok. We will totally recover back to who we were.” BULL***T! I know that the words are meant as encouragement. I know the words come from people who care so much for us, and yet have no words for what has happened to us. I know they are just words. But the message, the communication is significant. It matters to stroke survivors, it mattered to me. I was forever changed in the moment of my stroke. And when those words, that message came to me, I became invisible. I felt like no one really saw me. If you really were talking to me, wasn’t it obvious how much I had changed? When you told me that I would go back and get my old life back, I heard that you thought I was broken as a result of my stroke and I needed to be fixed.

It is impossible to go backwards anyways. No one can. Life changes us and we are changed. I believe that this message makes the survivor angry because they know the reality of their change. Inability to do what is expected of us, wanted for us, told to us, turns the anger into depression. We silence ourselves and suffer.   I believe that we have to go through stages of grieving, so to speak, after our stroke. Anger and sadness are stages. We have to grieve the passing of who we were and the life we had then. We have to let go of the labels we had for ourselves, that we internalize to be our identity.

We have to make room for a new life. And that is ok. I know that I could never have had a successful marriage if it weren’t for my stroke. I really had no idea how to be a part of a team before my stroke. I had no idea how to accept myself or anyone else. I was always trying to change people. I don’t do that today. And that is good. That is healthy. That is living life on life’s terms. And stroke survivors all know this. We are blessed by this experience and given a chance to really live and get the most out of each day.   So for me, depression is not an effect, today. I live life on life’s terms and have not experienced depression since I began living that way. Do you believe that suffering and depression are required in life? Do you believe it could be different, just for today? Is today enough?

I have a few bad “minutes” now and then. I don’t have bad days. I don’t choose to suffer like that today. The work and routines and “brain training” that I need to live this way, happen every single day. It is a very different way to live. I am joyful today, in a way that I never was, before or for a couple years after my stroke.

I am also blessed that I have not experienced aphasia. My Mom’s dear friend/mentor that was in the nursing home with me, did have aphasia. It was a severe case. She could not produce any intelligible language either by speaking or keyboarding. Her face was expressive and the eyes bright. The one utterance she made was, “Si.” It was repeated over and over with emphasis in conversation. Her family and friends were certainly pained with this effect. The great woman they knew, was gone. It happened so fast. It was all they had ever known her to be. They had to grieve this loss. She was not the literary, language diva she had been. (I however, had great conversations with her, much to my surprise.   I understood what she was telling me, somehow. She was expressing herself to me. I don’t know how. I don’t need to. It’s a stroke thing!)

I don’t believe that she was pained by her aphasia. I believe that the Stroke took away that part of her that would suffer from difficulty expressing. I have seen this happen with other stroke friends. I see that they do not suffer. Their families suffer. I am speaking only about the person who has the stroke. In my heart, it makes sense to me, that we are both protected and effected by the Stroke. I certainly suffered for years after my stroke. I went through things the way I had to, to get to the life I live now. But if you are not going to realize that freedom post-stroke, I believe there is peace.

I knew and loved a MOM. Her name is in capitals because she was the epitome of motherhood. Everything about her was good and loving and patient and kind and the best for children. I am so grateful that Jason was one of the children touched by MOM. I am equally grateful that I got to see this MOM is action. When Jason was a baby she bounced him. He’d be crying and fussing and squirming, as babies do. MOM would hold him on one hip and start bouncing. And she would jiggle and bounce him for what seemed an eternity. (I kinda worried that it might jar his innards a bit too much, but it never did.) And Jason would stop his unhappiness, right away and smile at her. I tried to imitate the move many times. No success. It is an exhausting endeavour. I don’t know how she did it. She had magic ways.

A couple years later, she spent Halloween with us. Jason had wanted desperately, and I had of course bought, a shark costume. It was a fabulous costume, head to toe. And Jason wouldn’t wear it. That’s right, on Halloween night, he refused; crossed his arms, set his jaw and shook his head. I was furious. I cancelled Halloween. “No Trick-or-Treating for you!” I bellowed at my 4 year old son. I was out of my mind, enraged at his disobedience. I had gotten him what he wanted! And it was something great! And this is how you repay me? On the big night?

And then Mom showed up. She listened to my rant and tirade, smiled and said she would take him out trick-or treating. I couldn’t believe it. I had cancelled his holiday and now she had him by the hand to go out in his jeans and a sweatshirt. I stood mouth opened in shock, aghast at her move. But I didn’t stop her. I couldn’t. You can’t stop MOM.

I was embarrassed that my kid would be out without a costume “begging” for candy. Mom didn’t notice. Outside, Jason walked happily with MOM into the dark neighborhood. I watched. Jason didn’t want to go up to a door to get candy. It was ok with MOM. She went for him. I was mortified. What would the people think of MOM coming and getting candy for a kid with no costume? MOM was not concerned. She said that Jason would go when he was ready. I couldn’t take it. I went sulking back to my porch to pass out candy.

After a time, MOM and Jason came back with big smiles and a big bag of loot. And by then, I smiled too. How insane I had been. What was so important about the costume anyway? How did it all become about me? What if she hadn’t been there? I knew in that moment that I was witnessing a pro at work. I was totally aware that this was a significant, unforgettable night. I was humbled to learn a great lesson that night about what is really important, from someone who knew. How grateful I was to be able to watch a Master MOM in action.

Not a year later, Stroke got MOM, alone. She was a nurse. She knew the signs. I think she knew them in others. She would spot a stroke FAST on a beloved child, but neglected herself. Stroke hit hard and by the time she was found, hours later, MOM was already gone to a safe place. Her soul/spirit was rescued at the moment of her stroke and went to be happy and whole and beloved. Her body was kept alive by machines for 6 months until her family was ready to let her go. They had to grieve and let go in their time. But I don’t believe she suffered then.

I saw her the first day after her stroke and many more days, until she was freed. I would play videos of Jason playing and laughing, to her. And she would smile and cry. I know she heard his laughter. I know it reached her. Her tears and the expression on her face, I just knew that she was there. She was there to be with Jason and then was gone back to her safe place. I just know this. Stroke takes so much from the survivor and their loved ones. But the spirit and soul is safe and free in the instant of the stroke. We hurt. We grieve. MOM was whole again, loving kids and being loved. I know it. Years later, I miss her so. I try to be as good a MOM as she was. I try to do what she would do, but she is not here. It hurts. I hate Stroke, for what and who we lose, sooner than we would like. But this grief is for all that lose a loved one. This feeling is not unique to the Stroke community. Death stinks for those left behind. I have to seek comfort in the blessings of her life and the fact that I was lucky enough to know and love her. I have to try to be a better MOM, for her. And I have to let the tears come when they do, for her.

Believe that I believe, at the moment of MOM and Mentor’s strokes, the spirit is brought somewhere safe, where they can truly be free. In that place, the survivor is happy and peaceful and can do all things that their Stroke took away. The part of the Stroke Survivor that we see pains us, for they are not as they were. They cannot be for us, what they were. But they are free. I believe this.

The infographic, EFFECTS OF STROKE has taken me from looking at few pictures and facts about STROKE, down a path of reflection and sharing about LIFE. Life on Life’s terms is what it all boils down to, for me, yet again. As Jean Granny used to say, “Life is Crazy.” I agree. What an adventure. And as usual, I like a good tune with my journey.  Jason and I both love a song. (ok. Ok. We both love a lot of songs and add new ones to the list all the time.) My students made me play this song over and over during indoor recess. They love the music of this song, the artist, the movie associated with it, and the beat. They are able to express grief when they listen to this song. It makes them emotional and they requested the song when they needed to deal with some feelings in their lives. (Which for 6th graders, between life and hormones, they asked me to play the song daily.) My students came together and listened to this song. There was healing for our group each time the song was played. It was/is magical the way it works.

I love the song for a STROKE support angle too. It speaks of friendship, loyalty and love. What is more important? It talks about people leaving our lives, changing paths and making our lives matter, in the end.   “The love will never be lost.” I love that line. I know that what and who stroke takes away from us, is not gone forever. We cannot lose love. The loved one, our memories, their gifts in our lives, and our own spirits are not limited to this body and this world. I believe this. Love is more powerful than STROKE. Lives are changed by everyday events and big trauma like stroke. There is no denying the change. We mourn and grieve. We are given a fresh start to be whoever we want to be. The sky is the limit. Our gifts are limitless. Our ability to love is limitless. And each day, we are given a great gift, to enjoy the love we have while we have it. We don’t know when our journey here will end. The love won’t end. But our days here will, and there are awesome things to experience. We GET to enjoy a great ride today, and tomorrow will take care of itself.

Jason fell in love with this tune in kindergarten. Each student was paired for the year with a sixth grade reading buddy. And Jason loved spending time with his each week. At the end of the year, the 6th graders sang this to the school and Jason cried. It was his was to say goodbye to his friend who was growing up and moving on. I am amazed that this song, sung by his school community could help him learn to deal with loss and sadness at age 6. I struggle with this at age 43.

https://www.youtube.com/watch?v=7LQdiLzjks8 .

 

So I have to ask. What obstacles have you overcome? I mean, seriously, look at yourself. The effects of events in your childhood, might be things that no longer rule you. I bet there are things you thought you would never get over or heal from, that you have. I know that healing is limitless. Just because you might still have to deal with the effects of some things long past, doesn’t mean you are defined forever by it. You have great things in your life today. I know it. Do you? There are great gifts of love and life in store for you. I know it. Do you? You have succeeded and tomorrow you will too. You are the absolute center of somebodies world. You are so loved. I know it. Do you feel it? Will you let yourself? Are you aware of where you are stuck and where you are now free? Believe that I believe. What colors, images and words would you pick for your infographic? What will you choose? Just sayin…

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

One thought on “July 24th, 2003 & 2016”

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