Stroke Day 365 – PTSD

It is one year today that our new life was thrust upon us.

I guess it says something that I haven’t had stroke as the forefront resident in my life for more than six months, as evidenced by my last of posting. Indeed, other normal things have taken their rightful place and the stroke got stuffed more to the back burner where it belongs.

I know fully that this not necessarily the case with strokes. I know that in the realm of  the ‘unlucky’ we are indeed ‘lucky’. But just because my world didn’t cave in a year ago …doesn’t mean it didn’t change.

I’d be lying if I said I wasn’t having some sort of anxiety about today. As if some date on the calendar was the magickal instigator of this upheaval and not the myriad of contributing health factors and practices!

To top it off, he had extensive oral surgery last night and that is only adding to all the PTSD anxiety.

When I attack it logically, I understand that at no minute am I in control of what will happen. Just like I wasn’t in control that morning when out of the blue on the way out of the shower his left side went non-responsive.

But that’s what PTSD tries to do…get me to think I can control things, but that I didn’t. BULLSHIT!

At any moment things can and do go wrong. Nine times out of ten they are not earth shattering/life changing. I am not going to let the ONE out of ten run my life – not now, not ever.

The difficult part about Chris’ success in rehabilitation is that he made it look easy. To look and talk to him you’d never know he’d ever had a stroke. To live with him, you don’t see all the damage he feels. Its almost as if it never happened…but it did and there are scars to prove it.

One of the things most affected is his processing and emotions. He gets easily frustrated (especially with new info) and can’t always find the right way to express himself. This comes off as ‘crotchety’ to put it politely. I hate having to always explain that. It helps, so I’m happy, but in the moment I feel like I’m acting like his mother and not his wife. I hope he doesn’t see it that way.

I never ever want him to feel like that.

He seems relieved when I do it, if he doesn’t think of it, so I take that as affirmation. Explaining to others that can’t see, that what they are seeing by way of behavior is nothing more than a scar on his brain. Understand that and we can move on well, his anxiety, frustration and agitation go down instantly. No more Mr. Crotchety Pants.

What This Year Taught Me

It isn’t a new idea. I’ve held it for a long time, but I’ve really dug deep on it this year.

I’m not interested in dealing with pettiness. 

I have eliminated relationships that are not synchronous. If you have been a ‘taker’ in my life, I’m not ‘giving’ anymore. I don’t have time for silly games of quid pro quo relationships or those who think I ‘owe’ them something. That isn’t what love is supposed to be about and my life…is ALL about the love. Unconditional love. I’m happy to love you, though from afar. No more emotional tap dancing to try to match the imaginary music in other people’s heads. No matter who you are.

This totally helped me break things down to a ‘keep or dismiss’ mentality.

Everything comes to you with one of two energies: towards your highest life or away from your highest life. Whether it is a person, a job, an activity, a food, an idea or even a location. It is either going to add quality to your life or detract quality from your life. With each decision we make towards our highest experience we make two moves away from our lowest experience. Of course, the reverse is true as well…every move towards our lowest experience results in two moves away from our highest.

I am all about making every move I make count towards my highest experience. No one deserves the right to take me off that path.

So, here’s to a year of growth!

Of not giving in to the fear or victimhood. Of taking chances even though ‘the worst’ had happened. Of not playing small. Of living truth. Of realizing the value of my life, once again.

 

 

Stroke Day ? – Shift, Balance, Shift

April 3, 2017, Monday

It never stops.

Not for one minute does it let me breathe. The air is being sucked out from my lungs. Its a back and forth tug.

When we met five years ago, we had an instant chemistry; across the internet, without faces, we danced with words on a screen. There was always this balance in the way we connected and communicated.

As our relationship grew, so too did this incredible balance. It reminds me of the lyrics “when you move, I move”. No move went unanswered. If I went left he went right and vice verse. It was beautiful. It was so so so beautiful.

I was able to build trust with every moment. Every time I stumbled on the floor he was there to stable me. I never fell. I never even came close. He made it seem so effortless and like I’d never have to worry again about falling.

But that’s gone now.

We had balance. Then it shifted.

I have to keep us both from falling now. When I move, he may not move. Or he might move, but only a little. Or he might move in the wrong direction. It’s gone. That balance. There is just shift now. Shifting sands.

If I ask him to bring toilet paper upstairs, he will, but I will find in the bedroom not put away in the bathroom. This is no way helps me.

I can’t imagine what its like to wake up and not know yourself. To not understand how your own brain works anymore. To not have full control over it.

It’s ironic, you know. That my mother was brain injured in a car accident when I was six and now my husband has a brain injury as well. I feel like in some ways I should know this dance. The shift should feel familiar. And I guess it does to some extent, but I wasn’t expecting it.

Yes, the shifting, that has familiar feelings.

I am hoping our shifting sands will one day settle back into a nice beach. Or better yet our dance floor. And that when I move, he moves…in my direction…as much as I move. Its ok if we move differently than before, as long as we are connected, choreographed and in sync.

That’s what I miss. Being in sync.

I remember when he knew what I needed before I knew; and how I knew what he needed before he knew. Now we are both struggling with just knowing what he needs. Then I struggle with knowing how to communicate what it is he needs, when he doesn’t agree. That’s the really tricky part, trying to relearn how to communicate with a man who’s communication style facilitated our bonding in the first place.

It’s heart breaking at best, devastating at worst.

I could approach this like its a new relationship; like we are getting to know each other again, but its not and I can’t. Perhaps if he were completely different I’d have to approach it that way, but he’s more himself than he isn’t. And the things that aren’t, are things only really I notice, because I’ve danced with him and know the nuances of his rhythm. To anyone else, things may appear continuous.

When you were younger did you ever go somewhere that had a replica of The Swiss Family Robinson’s tree house with a wooden rope bridge? That’s a lot like what it feels like now. Very wobbly and unsteady. If I’m not holding on, I will fall, but I also have to hold onto him as he holds on.

Ugh. Strokes suck.

 

*I don’t know why this didn’t post in April. Here it is January, but it was such a good piece I needed to share it…

 

 

Stroke Day 33 – Half Empty/Half Full

February 21, 2017, Tuesday

Today was the first day Chris drove – alone. We were both equally nervous. There are so many unknown variables in driving and they depend on the ability to react. He called me about 20 mins into the trip, the adrenaline rushing through my ears kept me from hearing him clearly the first time. He got a flat tire on the trailer and stopped to get it fixed. Whew.

He did say it freaked him out a bit at first, unable to discern what exactly was happening. However, he handled it and that is really all that matters…

“How do you think you are doing?”

I’ve asked Chris this twice and the answers I got were very different and unexpected. At first he felt he was 90%. I was surprised, we were still in the hospital and I didn’t see him operating at what I would call 90%.

A few weeks later when I could see him doing so much better he felt he was at 70%. I questioned him on this…he said what he measured against was different.

The first time he was measuring against how bad it could’ve been…

We were still in the hospital and engaging with others on the unit who had a stroke also. Even the staff joked with him that he did not belong there, “look at that guy pretending to be a patient.”

The second time he was measuring against how good he used to be…

Being on the job and holding himself up to his pre-stroke standard made him question and re-evaluate; finding himself falling short of expectations that he had no business having.

This is so poignant in life, not just recovery, right?

That what we measure ourselves against can give us different perceptions of ourselves. Often we measure ourselves against our goals. Which is really setting us up for failure, right? Because we are measuring how far we fall short of those goals. If we measure ourselves against our starting point we would be measuring our progress!

These are little mind games our ego plays with us to tell ourselves a story. If we want to be the victim of our story we will measure our weakness, deficits and shortcomings. If we want to be the victor of our story we will measure our strength, accomplishments and achievements! That’s it. There’s no other secret to anything! Its all in your perspective. There is no ‘truth’. No ONE-way to look at it. The thing is just a thing until you assign it a value, so why not color it bright?

It’s a little like “are you a glass half full or half empty kind of person?” I’ve had a hard time answering that question, because for me it depends on what stage of life the glass was in. If it had been full and I drank half, the glass is now half empty. If it had been empty and I filled it half way, then the glass is now half full.

The journey of life is about marking our progress, our evolution, our ascension. Its not about marking our decline. (Remember progress is not linear!) When we look at ourselves it’s imperative that we look with the eyes that will show us the picture that will inspire us, not defeat us.

How do YOU think you are doing?

Stroke Day 31 – Beginnings

February 19, 2017 Sacred Sunday

One month.

Without meaning for it to be a celebration we went out to brunch today. It was long over due as we planned to go to our favorite brunch place the week he had his stroke to celebrate our combined birthdays. But the fact that it landed on the month-iversary of the stroke struck me poetic.

It is cause to celebrate.

Much like members of AA celebrate each day of sobriety, we too celebrate each day post-stroke. So celebrating one month does not seem that off.

Sitting in our favorite brunch spot, eating our favorite foods resembled our old life and yet it had a new luminescence to it. A promise of things returning to balance. This favorite spot of ours is the place we got married.

It’s where our beginning began.

The beginning of our new life. The Michigan maiden voyage of the Klemos family. The beginning of my new career. The beginning of Chris building his business. The beginning of Emma’s new life, too.

Today we let ourselves marinate in the celebratory energy. We soaked in the environment, the sun of the day and the air of Spring (because today was unseasonably warm and it smelled like Spring.)

You don’t need to have a stroke (or your loved one to have one) to start anew and appreciate your life. We didn’t. We shared a great appreciation for the life we’ve had. We never took a second of it for granted. That’s one of the benefits of the over 50’s crowd. You don’t tend to take things for granted like in your youth.

So when a catastrophic event occurs it really takes that appreciation up a notch. I guess it might be a little like the appreciation for Spring after a particularly hard winter. There is always appreciation for a new season, but none such as powerful as that from Winter into Spring. At least that’s how it is for us now. Its like Spring after the stroke of Winter.

We are finding new life in all this.

This is where our beginning begins again…

 

Stroke Day 30 – It’s the Stroke Talking

February 18, 2017 Saturday

Our first fight.

I love Chris, but I do not love his stroke. The stroke however, like a serpent, comes in and strikes before I recognize its snake eyes. He looks like Chris and sounds like Chris, until he doesn’t. It isn’t often, thankfully, but that only means that it comes when my guard is down.

Today was the first day I felt awesome. Two days ago I had the flu and it caused me to put myself first, for the first time since January 19th. It wasn’t my choice so much as a default position. I was too sick to do anything else.

He seemed pretty awesome too, taking on the appearance of my pre-stroke Chris. He was paying bills, coordinating finances and making lists. Then he was yelling at me. Telling me that he is overwhelmed and can’t do one more thing. I yelled back, that he isn’t the only one who feels that way.

“But you aren’t the one who had a stroke.” He said.

The words sliced through my heart like a pick axe.

I feel like I took two steps back and doubled over with pain in my gut.

I didn’t have the stroke, but that doesn’t mean I haven’t been affected by it. I’m the one who has taken up the slack for what the stroke stole. I’m the one who has to decipher what doesn’t make sense to him and translate it back. I have been nonstop worrying, compensating, planning and caregiving; to have his words discount that hit me deep.

I needed to remove myself from the situation before it got out of control, so I took myself for a drive. By the time I got back we both had cooled down and reset. This is us…breaking things down and moving through them.

I understand his feelings. I empathize and I support him, but I can’t accept yelling at me. I can’t accept him discounting the value of my contribution. I know it was the stroke talking, but the stroke doesn’t get any free passes from me. I know the brain regenerates. I know it grows new connections everyday. So I treat the stroke like I treated my daughter when she was growing her brain, too; unconditional love and direction.

Bad behavior is bad behavior and that’s not who we’ve been to each other. We’ve always been appreciative and loving in our partnership. It doesn’t mean we haven’t had ‘moments’ but it’s usually been a result of stress related to money. This is new.

Thankfully, the stroke has not seemed to affect the way we manage conflict resolution. Chris has had a temper. It takes a super duper lot to set it off, and its always due to an internal struggle and never really about what he blows up at. The stroke did not steal this away. So, we did what we do. Found our respect for each other and talked about how ego-centered that comment was and what was really bothering him. Surprise (not), it had to do with finances and the pressures of returning to work with the expectations of having the same abilities as pre-stroke.

I also too had to bear some responsibility because I had not shared with him my feelings of ‘not being able to do one more thing’ as well as my own hope (not expectations) that things would return to ‘normal’ at some point.

Expectations.

Its really kind of an ugly joke we play on ourselves. Expectations are projections for the future. What a joke! Who the heck knows the future? It is so dependent on so many variables, that you can’t even begin to predict! There is hope, sure, but hope seems to have expectations as an accessory if you aren’t paying attention when it gets dressed.

He has to work on changing his expectations of himself and what he thinks he should be able to do. Progress is not linear, remember? Adjusting his expectations can avoid these kinds of meltdowns. He can’t expect to be back at 100% just one month post stroke (tomorrow). No matter how small and mild the stroke. He is, after all, 66.  His brain is 66. His neurons are 66. His nerve pathways are 66. His growth hormones are not surging like they did in childhood when the brain was busy generating daily at 100% speed.

One thing I’m learning is that a stroke will shake out the loose bricks of your very foundation, and its up to you to replace each one with strong mortar. Your survival depends upon it.

Stroke Day 28 – The Other Side of the Mirror

February 16, 2017, Thursday

I was supposed to drive Chris to work today, but last night I began to feel ill and today was full on flu. Chris planned to drive himself, first time, but when he got up he said he didn’t feel up to driving, so he stayed home.

Chris is very specific with his language and yet vague at the same time. He never said he didn’t feel well. He said he didn’t feel up to it. I took that to mean he was getting the same flu. Later conversations, however, would reveal something new.

Since the stroke he has said that he doesn’t feel hunger like he used to. That it doesn’t feel the same, and thus he doesn’t know when he is hungry, or thirsty or full for that matter. He doesn’t know what it is that he is feeling. He never developed any other symptoms like I did today, so now we don’t know what it is he felt this morning. He did not have the flu though.

I am glad he is at least honoring his body by listening to it. If he didn’t feel up to driving then he didn’t feel up to it, that’s just fine with me.

Another ‘stroke side effect’ that has sort of become ever more present is in the evening/nights, when he’s tired, he is quick to anger and is completely irrational. He can get disproportionately irritated by the smallest things; the dogs barking, the sheets on upside down. It presents as frustration over what doesn’t make sense to him, but then it escalates into a disproportionate response. I get so mad and hurt then. I am doing so much and he blows up?

Last night I had to tell myself that is the stroke, not him and it worked to keep my feelings in check, but I’d like to find a way to keep his in check. I know it is hard because he doesn’t have the words to express what he’s feeling. To him it is like he’s feeling it for the first time. Not to belittle him in anyway, but I have to think back to when my daughter was an infant and had no words for her experiences. What did she do? Cry, yell, get mad, so yah Chris’ reaction makes sense.

If I can think like that, validate his experience and talk him off the ledge things go better. At least there isn’t a blow up or melt down, just a little tension for a minute or two.

Of course none of this evaporates when I’m sick, right? So, I have to be on my toes even when I’m flat on my back.

They say alcoholism is a family disease and it is very true. It needs to be recognized that the stroke (a brain attack) is a family event too. Just like alcohol changes an alcoholic’s behavior and personality, which then affects the family dynamics, so too does the stroke.

We are experiencing two sides of the same event. A little ‘through the looking glass’ kind of feel. He is stuck on the inside, where things are backwards and I am on the opposite side trying to make sense of the side I can’t really see into all while trying to translate his new world for him.

Geez, no wonder I sleep more now.

If he can’t discern if he’s hungry, full, thirsty etc. what else can’t he discern? How would he even know he can’t discern it? How would I know? Could this be the cause of some of the irritation? Asking for something and then having it not be what he thought he needed?

Thus far his work quality seems unaffected. While he says it takes more concentration and time to do what he’s been doing all his life, his work product is the same based on other’s assessments. It just takes him longer, but for someone who’s nickname is “Mr. Rushypants” that’s probably a good thing.

That image of him being on one side of the mirror and I on the other, is really sticking with me. What we see of the other’s experience is backwards from our own.

One day I believe we will look back and realize he’s walked back through the looking glass and we are better for the trip.

 

Stroke Day 27 – Live. Learn. Love.

February 15, 2017, Wednesday

Card Reading of the Day:

“I can’t emphasize enough that what you are reaching for is being supported! We’ve got this.”

“Divine Timing is everything. Be patient a little while longer. Like a child reaching for something it is not yet quite ready for, so to do you. You are being covered though. Protected. Supported. What you want/need and desire is yours to be had, but not yet.”

“Please do not lose faith. Do not lose hope. And most of all do not give up. Just a little bit more growing to do before you can reach what it is you want so much.”

“We promise”

OH! What a perfectly timed card today!

There are times I feel completely alone. Completely alone and responsible for our whole world. Nothing any one else can do makes it feel different. I could have a hundred friends show up on our doorstep and it won’t change. I could have several friends call all day and it wouldn’t change how I feel.

Because only I am in charge of my feelings and my experiences they are based on.

Only I can determine whether I am alone or not. I spent years in a marriage where I was not alone but was terribly lonely. At that time I also built walls around me thinking it would keep out additional pain, because the pain I was feeling was so great I didn’t think I could handle any more. (The real problem with this is that walls actually keep out the joy and magnify the pain.)

It’s times like these I try to remember what a little seedling must feel growing in the darkness, pushing its way upward (not even knowing for sure it is upward) and then breaking through the surface to the sunshine.

It must’ve felt like it was on its own, not knowing the sun and rain were there rooting for it all along.

So, this message is perfect today. I am not alone. Even when I choose to think I am. Not only do I have human friends who support me, I have Spirit friends who are rooting for me as well. It’s all part of the design. We are never alone, though we do need to ask for help. Having free will, means no spiritual being will ever step in to intercede on our behalf without our asking for help.

This relates not just to the stroke recovery, but to our lives as well; his building up his remodeling business and my building my Sacred Work practice. In general, building our life; from mundane things like paying bills, to sacred things like our spiritual evolution as human beings.

There is a quote I love…

Before enlightenment, chop wood, carry water. After enlightenment, chop wood, carry water.

Now its…

Before stroke, chop wood, carry water. After stroke, chop wood, carry water.

It’s all the same. All events of life are the same. They are events that we must live through, learn through and love through. It doesn’t matter how mundane or malicious or amazing. Live. Learn. Love. That’s the process.

It’s knowing you are not alone even when you feel like you are. It’s knowing there is a light at the end of the tunnel even when it’s pitch black. It’s knowing that this too is for your highest good. It’s knowing that you are in control of everything and nothing all at the same time.

We never stop growing. We never reach ‘enlightenment’. We never reach our potential. We never reach that place of “I’ve done all that I could.” Energy can never die.

It is.

It is always.

It is always moving.

Life is never over. There is no ‘no tomorrow’, its just that tomorrow shapeshifts. When I reach this ——–> stage of enlightenment, there is a next stage I am already working towards. When I finish with this life, there is the next one (sorry I have nothing here to offer those who see no afterlife or reincarnation). It’s never ending because we are never ending and limitless.

Just keep moving forward. It doesn’t matter what quicksand feeling emotional quagmire you find yourself in, keep moving forward. Just keep moving because if the answer isn’t in the moment you are in, it will be in the one coming up. Just wait and be patient.

Stroke Day 26 – Biker Dave and the Bra

February 14, 2017, Tuesday

Chris has an infamous friend he calls ‘Biker Dave’. I have heard tales of Biker Dave since I met Chris, but I have yet to meet this character. Biker Dave has done a lot of really adventurous stuff. According to Chris, Dave is super strong. Chris is no slouch in this department either, so for him to impressed is something to note.

Dave had called while Chris was in the hospital to solicit his help in doing a job in Indianapolis. Chris, of course, had to decline, so today Dave called to check up on him…and tell him he was coming to visit.

I still have not cleaned the house. And I don’t really care. It can just be another one of Biker Dave’s adventures.

Dave was pretty much how Chris described him. A tall skinny guy with long hair. Nice as could be and very comfortable in his own skin. He was clearly not the kind that was going to be judging my house keeping skills, for sure. He was just that easy going.

We all visited in the living room for quite awhile before I offered to make a meal. “Salmon, anyone?” So off I went to make some food. Dave and Chris both joined me in the kitchen as I was setting the table.

We sat and visited some more until Chris asked Dave for some help with the trailer. I went back to my business on the computer. The whole time Dave had visited he was sitting in the chair I typically sit in. The chair I was sitting in to do my work. Dave called up to say goodbye and off he went.

I got up to do something else and when I went to put my laptop on the table next to my chair that’s when I saw it.

My bra.

Sitting on the table where I’d taken it off the night before. Right next to Dave the entire visit. Right next to Dave’s coffee cup the entire visit!

I can’t say I was embarrassed, because being embarrassed is something I gave up a long time ago. What happens happens, no point in wasting energy being embarrassed about it. Being embarrassed is comparable to worry, its just that one is over the past one is over the future. Its utterly ridiculous. I own my stuff…and I just so happen to own that bra that was staring Biker Dave in the face for two hours, so what?

The ONLY thing that mattered that day was that one of Chris’ long time friends came to check up on him. It meant so very much to him. See, Chris has always been the doer. The fixer; literally and figuratively. Its his gift. Whatever is broken he is the guy who will fix it.

He’s the one everyone calls for advice or repair. But he himself has never needed that service. He has always been able to do for himself. He has not ever been the vulnerable one. Being vulnerable has been the most discomforting part of the whole ordeal for him I’d say. Having to acknowledge that he is not super man was a hard realization for him, but to have the people he has supported and assisted come back to offer the same to him can be overwhelming.

This is when the emotional effects of the stroke can be seen.

Emotion overtakes Chris when he receives or even thinks about the care, love and support he has received during this time. While he was always expressive of his emotions, he never cried in front of anyone other than me. Now, he can’t help himself.

I find it beautiful.

Probably because that is how I am wired so it is nice not to be the only crier on the block. But I think people like to know that what they do, say or give has a deep impact. I think it gives good energy right back to them. He didn’t cry, but he was deeply touched that Dave came out just to see him, when they haven’t seen each other in several years. He talked about it for a few hours after Dave left, so I knew it meant the world to him.

Oh yeah…and its Valentine’s Day too, isn’t it? I guess if you are going to flaunt your bra at Biker Dave, Valentine’s Day is the day to do it.

Laughter, my friends, is the ONLY way we are going to get through this.

 

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 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.