Stroke Day 25 – Birth Day

February 13, 2017, Monday

I started this blog today. Which may seem odd to anyone reading it after the fact. It took me three weeks to have the idea to blog. I did not have the notion or the energy to blog as it was happening. But I wanted it to read real time.

So, today is a lesson in time travel, where my blog meets itself…

Today’s realization is this, “Life is a collection of stories we tell ourselves. Stories, btw, that we make up.”

Looking back now I am sure that it was born from yesterday’s thoughts, even though I didn’t know it at the time. That’s what led to this blog inception.

Our lives consist of a series of events linked together by our imagination and we interpret them. We interpret them in the moments. We interpret them in the days afterward. We interpret them in the weeks afterward. We interpret them in the months, years and decades afterward.

We get new information and we reinterpret them. We have information corrected and we reinterpret them. We gain spiritual insight and understanding and we reinterpret them yet again.

The events themselves have only the value of our interpretation. At any given point as we look back on something we can change its value. We look at it as harmful or helpful; eye-opening or heart-closing; bad or good.

Think of all the things you thought were ‘bad’ for a long time, and then one day realized that something really great came out of it. Wouldn’t that then change the value? Wouldn’t that make the ‘bad’ thing really a ‘good’ thing? So what if we didn’t actually assign values at all?

What of the things we allow to hurt us because we perceive them with a child’s mind? With adult insight needn’t we go back to look at those events and the experience they lent us and reassess them?

As a child, my favorite fairytale was The Ugly Duckling. I didn’t feel like I quite fit in anywhere and had terrible self-esteem issues. Around the age of ten, I found my parents’ marriage certificate and saw that they married two years before I was born. I was devastated. How could they wait TWO years before having me? I interpreted this to mean that they hadn’t really wanted me. This only added ‘proof’ to my Ugly Duckling image. I never told anyone these thoughts and they became a foundational part of my belief about myself.

That belief lay there, under a thousand others, unheeded, until sometime in adulthood when I recognized the child’s logic. The child did not know it takes a minimum of 9 months to create a child…and blissfully unaware of mitigating circumstances that could affect that creation. That child didn’t know a myriad of things that factor into the decision in having a baby.

Yet, still those thoughts directly affected my life growing up and needed to be re-evaluated, reassessed and revalued when I knew better. It was devastating to that ten year old girl, but the woman who reassessed that situation didn’t see it that way at all.

So, you see, our lives are full of stories we tell ourselves. We think them to be true because they are factual, but truth and facts are not synonymous. (Its a fact that my parents were married two years before I was born, but that fact did not make it true that I was unwanted.)

Our lives are collections of stories we tell ourselves, therefore we have the right to rewrite them.

This stroke will one day be a story we tell ourselves, as well.

We are both writing the first draft as well as we can. One day it might get rewritten, but we aim to do it right the first time around. Or maybe its just one that won’t ever be done being written, just inspire sequels.

What I absolutely KNOW is that based on past experience something this huge always affects the hero in a powerful way.

 

Stroke Day 24 – It’s Not Fair. It’s Life.

February 12, 2017, Sunday

“This is what I fear.

We are three weeks out now and the difference in him is imperceptible to some, but his personality is indeed different. There are glimpses of his old self. He’s made so much progress with the energy therapy that I have hope now that it will all come back for us.

But in the back of my mind I think, ‘Wow, five years. That’s all I got. I spent 23 years with a fricking narcissist and only get 5 years with the love of my life.’ What if I don’t fall in love with the new guy? I’m 52 he’s 66. We both could have very long life yet ahead.”

I wrote that in one of the support groups today. I wrote it out loud. Its something I’ve been not letting myself think much less let out, but there it is. And now it’s here.

It’s true. Stroke’s aren’t fair, but for that matter Life isn’t fair. It was never supposed to be fair. That’s some ridiculous notion set in play in childhood…’we must be fair’. I like fair as much as the next person and I attempt to be fair in all my interactions, but fair is not guaranteed. The best we can hope for is balanced.

Everyone has something going on right now. No one is without a struggle. Not that I’ve found anyway. So, in many ways, things ARE fair or balanced, right? But it doesn’t feel that way and when I allow it, it can make me feel like a two year old who doesn’t understand ‘no’.

I don’t get it. I really don’t. It isn’t fair. Chris and I haven’t had enough time together. We are still getting to know each other. We still have things to explore and now its changed. Its a parallel Universe we have re-entered into and I wasn’t finished with the first one.

It’s not fair. It’s Life.

When would have been a good time for the stroke? Further down the line? When he is 80 and I am 66? When we are in the midst of grandchildren and retirement? Would that feel fair? Not likely.

The stroke was a message and if we are smart we will listen.

An ischemic stroke is caused by a blockage. So what blockage does Chris have? That is his story to tell, should he ever choose to. He and I have discussed it. We are opening up those blockages to prevent further ischemic strokes and allow chi energy (life force aka ‘blood’) to flow smoothly and freely.

This I will share with you. The brain is command central. The brain stem (where Chris’s stroke happened) is the epicenter of command central. This means the message is that the blockage is all in his head. It is in the very core of his thinking. Something he has overlooked before. We’ve explored it and will continue to explore it.

Here’s what I’ve learned from all this.

Control, like fairness, is an illusion. It’s nice. It’s optimal. What it is not, is guaranteed. We are only in control as long as we are in control and what we are in control of is everything and nothing all at once.

Let me explain that…

“We are only in control as long as we are in control…”

We are only in control of what we think, but when our ability to think is impaired where does our control go? Who’s in control then? The answer is as individual as we are.

For me, I think when our mind goes, our higher selves are still in control. Thus, for me this is true. (For another, this might be that God is in control.) So, for the first part “we are only in control as long as we are in control” means I have confidence that part of me is always in control of whatever is happening. This empowers me. I know, always, on some level that I have input in what is going on and what is going to happen in the future. I know that my higher self will prevail.

“…and what we are in control of is everything and nothing all at once.”

This part is trickier.

With my tiny human brain, in my tiny human physical form I can command my experience. I can choose to react or respond. I can choose to zig or zag. I can choose to love or to fear.

What my earth generated organism (ego) cannot command is the overall picture I set in motion prior to my birth. However, since I did choose it I suppose that means I do actually have control over it, right? Actually the most control there is.

Oy, this makes even my brain hurt.

So, what is the point?

We are in control.

We are in control of how we respond to any situation. We can believe that our higher selves are in control. We can believe that our Higher Power is in control. We are in control of what we believe. We are in control of whether we believe ourselves as a victim or a warrior. We are in control of whether we believe that everything is a miracle or nothing is.

In fact, we are in control whether we believe it or not.

And I’ll just leave that right there.

Stroke Day 23 – Heart Broken

February 11, 2017, Saturday

I spent the day with my friendster (sister-like friend) and her daughter, my niece. It was the first time I’ve left Chris alone since the stroke. Alone, with the three dogs that is. I was a little uneasy about it, but not enough to stay home. I can’t imagine what it must be like for a grown adult to be ‘babysat’ every day. So I sincerely felt that it was the best thing for him. It was something of the old life that needed to be returned to him.

He has never been unattended since January 20. As an introverted empath this would be torture for me. I have to have time alone every day and long stretches at least once a week. I would be on overload if  I had to be attended to 24 hours for 20 some days straight! So, I felt for him and since he’s been doing really well I felt it was time to give him this opportunity for success.

I made sure that he had whatever he needed and had a strategy for whatever the dogs needed. Before I left, he said to me, “Thank you for taking such good care of me. I don’t know anyone else who would still love me after this. I’m a mess.”

My heart broke. Does one really think that they are unlovable because of a physical event? Does HE really think that I couldn’t still love him? While I am touched he expressed his gratitude, he is such a wonderful man that everyone who has ever met him, loves him; that he truly thinks he would be unlovable, makes me breaks my heart down to my soul.

I cannot allow that. I cannot allow him to ever believe that he is less lovable.

No one who suffers a stroke is ever the same person again. Anyone who loves someone who’s survived a stroke hasn’t experienced at least one moment of questioning. Questioning if they can continue caregiving. Questioning if the stroke took away their loved one forever. Questioning if a new behavior is permanent or passing. And yes, questioning if they still love their survivor, but also if their survivor can truly love them back.

It’s natural. It’s fleeting. And in same cases it can be permanent. In some cases the stroke takes away the entire essence of the survivor leaving in its wake a negative image of the former self. Even in these cases it is not the person they have fallen out of love with, for that person died with the stroke, it is the stroke that is unlovable.

About 8 months after Chris and I started dating I was diagnosed with fibromyalgia. Chris was nothing but supportive, yet I still remember feeling like a burden and thinking that ‘he didn’t sign up for this’ as I attempted to manage the daily pain and fatigue. I never thought I was unlovable for it though. Too much trouble, yes, but not unlovable.

Truth be told it was good and necessary for me to get out of the house today too. To do something non-stroke related to give myself a bit of reprieve. Now, I could’ve spent my time worrying about him, but I didn’t allow that. I called twice only. I focused on unpacking boxes and organizing kitchenware. It was the greatest reprieve. I wasn’t in charge. I wasn’t responsible for anything more important than where the pots and pans would fit best. It was a gift. And of course spending time with my beloved friendster and my niece was just icing on the cake.

This morning started with gratitude but the day ended a little differently.

He came completely undone because when I made the bed the top sheet and the comforter were upside down. While pre-stoke him was OCD enough for it to matter, he just would’ve fixed it. This time he was seriously upset about it and talked about it endlessly. As he was getting ready for bed he started in on it again. About how he didn’t understand why the sheet and comforter would be on upside down.

Mind you, I changed the sheets yesterday.

He mentioned it at breakfast, but I ignored it. He made another comment when I got home, but it really escalated when he was getting ready for bed. I finally had to snap him out of it by giving him explicit instructions to change what doesn’t suit him.

“If you truly need the sheet and comforter a specific way then you are capable of fixing it. You really need to be happy you have someone to put clean sheets on your bed.”

It was as if he hadn’t even considered that he could change it himself, but once I planted that seed, he fixed it and never said another word about it. I didn’t take it personally, I know it was the stroke talking.

Just as before this I could never have imagined what it would be like for a supporter of a stroke survivor, I now can’t imagine what it must be like for stroke survivors…heart breaking.

 

Stroke Day 22 – Asking For Help

February 10, 2017 Friday

'Card reading for the day:  You have much to offer.  What you are. Who you are, is a gift for the world. You have much to offer, though you have felt more like a beggar lately, you have much to offer the world and do no good playing small.  Explore and embrace what you have to offer and receive with grace that which the Universe offers you. It is not well with your soul to give and not receive. It is not well with your soul to receive and not give.  The card today shows a balance, your bowl has plenty to share, and room to receive more. This is where you need to be. A good balance. Do not play the Martyr, the Beggar or the Orphan. Neither play the God/dess, the Ruler or the Hero. While aspects of these are seen as positive, losing oneself wholly into one of them is too extreme...without balance.  Be humble without being self-deprecating. Be empowered without being overbearing. See, how she is open and offering to the world, not hiding her gift and not forcing it upon anyone either.'

Card reading for the day:

You have much to offer.

What you are. Who you are, is a gift for the world. You have much to offer, though you have felt more like a beggar lately, you have much to offer the world and do no good playing small.

Explore and embrace what you have to offer and receive with grace that which the Universe offers you. It is not well with your soul to give and not receive. It is not well with your soul to receive and not give.

The card today shows a balance, your bowl has plenty to share, and room to receive more. This is where you need to be. A good balance. Do not play the Martyr, the Beggar or the Orphan. Neither play the God/dess, the Ruler nor the Hero. While aspects of these are seen as positive, losing oneself wholly into one of them is too extreme…without balance.

Be humble without being self-deprecating. Be empowered without being overbearing.

See, how she is open and offering to the world, not hiding her gift and not forcing it upon anyone either.

One of the hardest things for me to learn to do has been to ask for help. Years ago I started by accepting help when offered. It was difficult at first; my first inclination always to politely refuse. However, each time I accepted the help I felt an opening occur. Specifically an opening up. Resistance builds walls and creates blockages. (If we are not accepting help from people then we are not accepting help from the Universe, which blocks our abundance, but that’s another topic.)
Then I moved on to actually asking for help instead of just accepting it when it was offered. Holy crap! I think I broke out in hives the very first time, but it worked. I received the help I needed! I wish I could say it felt amazing, but it didn’t. I had all these scripts still going around in my head about needing help meaning I was weak and a failure. The scripts were part of my toxic operating system. My empowered operating system said that everything is based on ebb and flow, give and take, and that anything other than that was a power struggle not a relationship. If I offer help I need to be able to request it as well. That is balance!
Chris’ stroke has been a new lesson in asking and accepting help. It’s hard to ask for something you don’t know you need. It’s hard to ask for something when you need everything. It’s hard to ask for something more than once. It’s hard to ask for something when you know others are in need, too. It’s hard to ask for something more. It’s hard to ask for help when it seems all you have been doing is asking for help.
It’s also hard to ask for help when you’ve asked and it doesn’t come.
I had to get serious about really looking at my life and where my energy has been allocated. Of all the people I have helped along the way in their times of crisis, it was very few who came to my aide. That was sobering to say the least. People I had helped, regardless of what was going on in my life, could not find it within themselves to do the same for me. Even simple things like phone calls or messages seemed to be too much.
The unexpected gift was that people I did not expect to come to my aide, not only came but came full force! THAT feeling was indescribable.
So, what did I learn? I learned that maybe I need to allocate my own resources a bit differently. That just because someone asks for my help does not mean I need to put resources towards that if it is not truly in my best interest to do so. That sometimes not helping someone can be the greatest help of all. Sometimes you have to realize that you have surrounded yourself with takers and that is a power dynamic not a symbiotic relationship. My life is about enriching people’s lives so that they empower themselves, so I need to take a real hard look at whether what I do is empowering or disempowering.
Second and third, I was reminded that people can surprise you and the Universe always provides. While it has been a struggle these past weeks, we have not gone without eating. We haven’t missed a payment on the house. We haven’t missed any payment of bills, in fact.
Its been close. REAL close. But it hasn’t happened.
Going back to the card reading today.
The card today shows a balance, your bowl has plenty to share, and room to receive more. This is where you need to be. A good balance. Do not play the Martyr, the Beggar or the Orphan. Neither play the God/dess, the Ruler nor the Hero.

To remain in balance. That no matter what, my bowl has room to receive and plenty to share!

Stroke Day 21 – The Gift

February 9, 2017 Thursday

I am a medicine woman. My purpose in live is to make sense of events and interpret the messages from the Universe. There are always messages. Always. The wildlife that crosses your path, your car battery dying, detours on your travel route, car accidents, train delays, catching a cold and oversleeping etc…

In my practice though I also use cards to intuitively interpret messages for myself and others.

This was today’s…

There’s a gift.

Everything looks upside down and dark but within you a gift is growing. Like the sun on the horizon grows. Like a seed in the depths of the dark earth grows.

It is up to you to protect, it nurture it, for one day you will give birth to it.

Cherish the upside down darkness for the gift it is now. Do not wait. Do not worry. It is growing and glowing inside you. You can feel it. You know its true.

Do not let fear take away the gift. Allow the darkness and upsidedownness to persist, you look inside and see the gift waiting for you. The gift that IS you.

As within, so without.

This was a super strong message for me today.

Everything truly has looked upside down as of late. Everything has been TURNED upside down as of late. Its not my perception, it is fact. What is my perception though is whether or not I look at it as a gift or a burden. I have learned from past experiences of trauma that I can let it eat at me like a cancer or I can embrace it like a teacher. So, I am embracing it.

Each and every day embracing the new gifts this turning upside down has brought and waiting for the seeds to take root. In the darkness of the unknown I find peace. Nothing is as I expected it would be. There is a new twist and with each new twist comes a deeper knowing. A deeper understanding. A deeper bond. With myself, with my beloved, with Source. This is too big to not change our lives and so I embrace that knowingness.

And I look a little forward to it.

Let’s face it. Having a predictable future is boring! We tend to stop seeing potential and change and have tunnel vision. We overlook the smallest things that could change our lives in great big ways. Or we just get complacent. Events happen to shake us awake sometimes. So I allow myself to be shaken awake.

So I disallow fear of the unknown, to take away the gift of the unknown. Things will never be the same again, and in the beginning I mourned that. Now, today though, I am beginning to wake up to the wonder that the unknown holds.

Like waiting for a baby to be born, but being satisfied in the experience of being pregnant.

I am the gift. Chris is the gift. Our life together, that is the wrapping paper. And we tear that paper to get to the gift. We shred it. We do not carefully peel off the tape and try to preserve it. We rip it off because wrapping is of no value. We are the value. Who we are and how we face this together…that is the only gift there ever will be.

That we are together having all sorts of amazing experiences even in the most mundane or tragic moments, that is the gift. We are not dependent on things ‘going right’ or ‘going our way’ to have a good life. We have a good life no matter what happens. We remember that we both have a choice in whether something becomes ‘good’ or ‘bad’ in our life.

We know that we have the power to make anything ‘good’.

That is the true gift of life.

 

Stroke 20 – Reunion

February 8, 2017 Wednesday

“I feel really good. Today is the first day that my left side feels like it belongs to me, again.”

That’s how the day started.

His words hit me so deep. I so appreciate each time he finds words to describe his experience because I gain greater understanding. I don’t know exactly why these words hit me so deep today. The idea that part of one’s body could feel as if it wasn’t yours is so far outside my standard of reference that it brings a new dimension to my compassion for his journey.

I can’t fathom now he’s been working so successfully!

How do you tile with someone else’s arm? Walk, with someone else’s leg?

What a victory that today he feels a reunion. Like members of his family coming back together after a disagreement.

I wonder then if next month I will look back on today and think “that was the day of our reunion.” If today is also our reunion.

I don’t think I’ll be able to know that today. I think that will have to be a realization that comes slowly bit by bit daily and one day I will realize, “Oh, yes, my beloved feels like he belongs to me again.”

Stroke Day 18 – Progress Isn’t Linear

February 6, 2017

Tired. His biggest complaint right now is that he can’t believe how tired he gets after doing ‘nothing’. His idea of nothing of course, is not nothing. It’s going to work 8 plus hours a day, climbing ladders, putting up tile, engineering plans etc. He never does ‘nothing’ unless he stays home. That’s when he feels the most tired. Or should I say that’s when he feels the tired most…because he is actually paying attention to it.

Truth is after a stroke your body is never doing nothing ever again because in the background your body is constantly rewiring, reconfiguring and regenerating. That’s not nothing. That’s something. That’s something you want to encourage and support. He doesn’t get that though.

It would be easier to explain to him if he’d ever been pregnant.

I had the same perception when I was pregnant. How could I be tired after doing nothing out of the ordinary? Just walking up the stairs or cooking breakfast would exhaust me. Because my body was creating life. Everyday my body was supplying food and oxygen to new developing parts. New neural pathways were dependent upon the primary life force to do its work so there was an extra drain on my power resources.

HIS body is re-creating life, by building new neural pathways between his brain and his body. This puts a drain on the primary power source as resources are redirected and allocated according to priority…with repair being THE priority. That’s exhausting work! The key is to find a balance of sleeping and ‘therapy’. Do some, rest some. Do some, rest some.

In addition, there is the grief factor. Grief comes with a side of fatigue and since loss is a huge part of a stroke, grief is a huge part too.

There is so much loss with a stroke. Loss of control, being the first and foremost I think. Gone is any remnant of the illusion that you are in control of anything. At any point Life can throw you this curve ball and no matter what thoughts you THINK you can’t control it. You can no longer guarantee that the words you are thinking are the words that are coming out of your mouth. You can no longer guarantee that when you go to climb up the stairs your left leg won’t fall out from under you. You can no longer guarantee that you will wake up tomorrow the same person you are today.

It’s earth shattering.

All the other losses are under that same umbrella in my mind. The loss of independence. The loss of language. The loss of rationality. The loss of problem solving. The loss of physical function (of course). ETC…..

As far as I’m concerned as long as today is better than yesterday we are heading in the right direction.

But then again progress is not linear, either. I know this and I am reminded of it now more than ever. Three steps forward, one step back. Chris will sometimes feel he’s going backwards because one day he feels less steady on his feet than the day before, or he’s having more trouble with finding the words he wants to express himself than he had a few days ago. That ‘one step back’ is especially noted the day after he’s pushed himself too far.

Pushing too far is exhausting the muscles and requires more rest to recover. Several days in a row of pushing would require that much more rest and would indeed seem like regression. Getting him to understand this though is tough. Getting him to REMEMBER this is impossible right now. I really had to relate it back to some other experiences in life, for him to ‘buy into it’ and then I have to remind him of it frequently. Once, again I find myself reiterating the importance of a work/rest balanced equation for optimum recovery.

This is where I see the old-self and stroke-self struggle. Chris’s old self, still thinking it is in control, wants to run the ship like it has for 66 years. The stroke-self just isn’t wired for that kind of wattage. Once the old-self gets frustrated with the stroke-self melt down is inevitable, and because of the stroke-self being unstable and ungrounded, I worry. Stroke self is unfamiliar to me and thus unpredictable. What’s the word they use for an unstable situation? Volatile?

If I can find a way though, to speak to old-self in a language that translates the experience/happenings of the stroke-self then we get to the birth of the new-self. I hope. That’s the plan anyway. So far its been working. Appealing to what is familiar to him, and applying it to the unfamiliar re-establishes some sort of control for him. I guess it is like when your GPS reroutes you. Yes, on the way tot he market you wanted to go left at Main Street, but encountered a road block, so you have to pass it. Your GPS says ‘re-routing’ and before you know it you can make a left at Brown Road instead.

And that is why I too get more tired doing ‘nothing’; being an emotional GPS is not easy.

Hey maybe that’s a job for me?

Stroke Day 19 – To Laugh Again

February 7, 2017 Tuesday

I’ve been the chauffeur as Chris is just not quite up to driving yet. I don’t mind it at all. In fact, I’m happy; it gets me out of the house and we get some time together. Today I was particularly happy to drive (vs him driving) as it was quite icy, after snow, rain, freezing, rinse and repeat the past few days.

We ran our errands and did what we needed to do and on the way back in, I stopped to pick up the mail before proceeding up the long driveway to the house.

I got out, no problem.

Got the mail, no problem.

Returned to the car, no problem.

Attempted to get in the car, however, epic fail.

While lifting up my right leg and putting it in the car, my left foot began to slide under the car. I grasped the door and the steering wheel determined not to hit the ground. I am not exactly sure how this looked to the driver’s passing by on this fairly busy road, but I assure you to me it felt like slower than slow motion and nothing short of a circus act. I pulled on the steering wheel and pushed down on the arm rest to no avail. Down I kept going.

I eventually gave up the arm rest and opted for two hands on the steering wheel, at which point my left leg was completely under the car and my right one was behind the gas peddle. Those who know me well, know the worst things are the more I tend to laugh.

Seriously.

In high school I went on a family trip with a friend on mine and went to pet the mule outside a trading post store. The mule licked my hand. Oh so sweet! Then he ate my hand. The entire hand part of my hand (as opposed to the finger part of my hand) was serving as a dental mold for this mule who would not let go and I all I could do was laugh hysterically. The problem with this is that I cannot speak when this is happening. I can only laugh more, so NO ONE KNOWS I’M IN DISTRESS! My friend’s dad had to bonk the mule on the face several times before he let go. Which is odd because later on I discovered that a mule does not/cannot let go mid bite, but rather must complete the act before it can unhinge.

But I digress.

Anyway, here I am in some sort of inverted yoga scissor pose gone very wrong and laughing with tears running down my face, hardly able to breathe. Chris, my Knight In Shining Armor is on the phone with a work call, not reacting at all to my dire straights. Eventually I give up the fight, let go of the steering wheel and gently eased down to the icy ground to slide out from under the car. I make another attempt and land successfully behind the steering wheel as Chris is hanging up the phone.

Without missing a beat he says, “What’s with the dancing and messing up my phone call?”

We both burst into laughter (another bout of not being able to breathe). Ah, it feels good to laugh again.

This is Chris. The unexpected humor that is uniquely his own and has been MIA since the stroke. One of the things that made me love him was his unique ability to say the most off the wall things to ease tensions and facilitate levity. He hasn’t been that quick on the ball, and sounding more passive aggressive than anything. It’s what has gotten us through some really tough times before and now when we needed it most was absent.

This was the first glimmer of his old self returning. My first real shred of hope that we will be ok. If we can laugh we will be ok. That’s the rule.

Honestly, if you can laugh about it, it isn’t that bad, right? I mean tragedy isn’t funny, so if you can find something funny it must not be tragic. At least that’s our story and we’re sticking to it.

Yoga anyone?

Stroke Day 17 – Don’t Tell Me I’m Lucky

February 5, 2017  Sunday

While it was I who first started calling this our stroke of luck, I have not felt lucky. It isn’t luck that creates a clot in your beloved’s brain, killing off a very real part of him. It isn’t luck that has him relearning things he’s spent 66 years doing.

Yet, a couple of times, I have spoken of my fears and uncertainties only to be met with some form of “you’re lucky he isn’t worse off…..”

I would caution the use of the word ‘lucky’ when speaking to caregivers of stroke survivors.

I understand what is being said. I know it could’ve been worse. I know some have had strokes that are more debilitating. I get that.

But you see, when he was paralyzed on the left side, we didn’t know he’d recover. When he was having additional strokes we didn’t know when they’d stop. When we were in the midst of it we didn’t know anything. We just knew that his body…his friend of 66 years…had turned on him.

We certainly did not feel lucky.

In addition, he is way underinsured so outpatient rehab isn’t covered at all. Doctor’s visits are not covered at all. Meds are not covered at all.

So you see, we don’t feel lucky.

One more thing, no one knows what else may or may not be going on in our lives that we might be dealing with simultaneously. Oh sure, maybe our stroke seems like a cake walk to you, but maybe the rest of your life looks like a cake walk to us. We have layers upon layers of stuff going on. I never assume anyone just has the stroke on their plate, I appreciate when others don’t assume the stroke is the only thing on ours either.

What we as humans do is project and superimpose. We project that what we see of other people’s lives is representative of their entire lives, when in fact it may be as little as 3% of their lives. We project that the rest of their lives is perfect OR it is at least as good as ours. So you see our stroke and think, ‘if only ours was that minor, our life would be so much better off’ not seeing the rest of the picture. What you did was take our stroke, superimpose it onto your life and assumed that would be our life. That just isn’t reality.

Saying one should feel lucky because the damage of the stroke is minimal is like telling a physically abused woman she should feel lucky she wasn’t killed. Or a mentally abused woman that she should feel lucky she wasn’t physically abused. Or a war veteran that he’s lucky he wasn’t killed like his friend, or lost a limb like another…

No one feels very lucky in circumstances like these. Grateful it wasn’t worse, yes, but never lucky.

When one says ‘you are so lucky’ in response to hearing your full story, it comes off as supportive, empathetic and kind. It is often another word for ‘miracle’ and that is so totally NOT the use of luck I am referencing.

When one says ‘you should feel lucky that _____’ in response sharing your emotions, that is a ‘shut down’. It makes the recipient feel as though they don’t have a right to feel the way they are feeling right that minute because someone else might have it worse.

I’m not saying that anyone MEANS it to sound like that. I’m just talking about communication and doing a PSA to let you know what you are doing to the person you just told should feel lucky.

There are three aspects to communication; 1) what is meant, 2) what is said and 3) what is heard.

When you speak you are responsible for the first two parts of the communication, by saying what you mean. When you are the listener you are responsible for what you hear. You have to be mindful that what you hear is going through its own filter and so you need to pay close attention to make sure what you heard is actually what was said.

That said, we do know that we are lucky…to have found each other and face each day together.

 

Stroke Day 16 – Strokes and Sociopaths

February 4, 2017 Saturday

I think the moment my daughter and I truly fell in love with Chris was the first Christmas we shared in 2012. We’d been dating for nine months and all three of us had developed a tight bond. While we had picked out some great gifts, Emma and I thought it would be fun to get Chris an Eeyore stuffed animal.

He loves stuffed animals and I love Eeyore, so we thought it would be the perfect fun gift for our first Christmas.

Chris has always been expressive of his emotions. He is quick to be grateful and to show love. He’s never ever been ashamed to express himself. Its something I have always appreciated in him.

While Emma and I intended to save Eeyore for last, we couldn’t wait and brought it out first with big smiles and laughs. But Chris wasn’t smiling or laughing. Chris was crying. Face scrunched, tears brimming and speechless type of crying.

What we thought was the perfect gift was more perfect than we knew, and it was his vulnerability that made us love him right then and there.

Since the stroke Chris has had strange experiences of emotion.

I noticed it first while we were watching TV when suddenly Chris would make a noise that sounded a little like a seal hiccuping and coughing at the same time. It was always at moments when I myself was getting teared up at the plot of the show.

Chris said he didn’t understand what was happening to him. That he was feeling emotional and didn’t know why. This is strange to him. He’s never gotten emotional over fiction before. I do that. I do that and he laughs at me.

So why the weird noise?

“Its stupid. I don’t understand why I’m getting emotional so I try to keep it down and it sounds like that.”

“Well, I’m thinking you should probably not do that anymore. Just let it happen.”

This experience, or rather, these experiences have brought up some interesting conversations about what emotions really are then. I have been one to think that our emotions stem from our beliefs. If we believe something to be a ‘good’ thing then we experience positive emotions around it. If we believe something to be a ‘bad’ thing then we experience negative emotions around it. I’ve known that chemicals are released in our brains associated with these beliefs causing these emotions, but did not realize how much the intensity of emotions is affected by those chemicals. I mean it makes sense. I just never thought about it before.

I now understand sociopaths a bit more. If you have a physical impairment impeding the production of certain chemicals associated with creating emotions then it would be impossible to have emotions, right? So what would drive someone then? I mean really. What drives you? Feeling good, right? That’s what drives me. Feeling bliss. What point to life is there without that? And how can sociopaths find meaning in life without it?

I am quite happy that Chris’s stroke affected him this way rather than the sociopath way. A lack of empathy would be devastating to the way we relate together. It gives me such pause to think about. Are we really just a lot of chemicals? Is anything we experience actually what we think it is? How would we know if it wasn’t?

I’v been teaching people to expand themselves beyond the conditioned mind. Unlearn the things that have caused them suffering and establish core truths. Understanding that you can change your experience of life with the change of your thoughts, beliefs and emotional patterns has been the foundation of my teachings. So, now what? How does this new information change that?

It doesn’t.

We are still in charge. It is our thoughts, beliefs and emotional patterns that trigger the release of chemicals. Yes, the amount of chemicals released is physically determined. We cannot alter that. However, we can do our best with what we have right? In fact, isn’t that our obligation? To do the best with what we have? Its our birthright to have the highest experience of life available to us…our physical deficits notwithstanding.

This lesson I learned from my friends with developmental disabilities. They never let their physical differences get in the way so then neither should we.

Chris has a long way to go, but he is heading in the right direction. It isn’t ‘fair’ what’s happened to us. Just like it isn’t fair that its happened to other families. Just like a million other things in life aren’t fair.

But life isn’t about being fair; life is about becoming your highest self, even through the lowest of circumstances.