50 thoughts for you.

You’re seeing an MRI of my brain 8 years ago. The white areas on the side are essentially dead. The particular location of my clot caused major damage to the artistic and musical side of my brain (the right side).

To list a few; the life altering consequences of the stroke has been many. In no particular order I’ve, largely, lost use of my left hand.

I can use my thumb and pointer finger for a pincer grip for which I am extremely grateful. Functions of my hand are weaker, less coordinated now, but still intact in some ways.

The immediate complete paralysis of my left side remained in effect for a month or so.

I had no idea whether any lost function was going to come back. This was one of the hardest parts initially; to not know if I was going to live very long. To not know why I had a stroke. To not know if I would ever walk, run, smell, drive or be able to take care of my daily needs again.

To be honest I just wanted to die. For a long time.

I read scientific papers covering the particular stroke I suffered from. I desperately needed to know why I had a stroke. The first part of my body that started to recover was my left leg. The arm was paralyzed for 6 months at least. It is such a devastating blow to ones self esteem to not be able to handle the very basic needs.

I have always been fiercely independent and it has meant everything to me to live my life fully. To be true to myself. To listen to my inner mind. Be kind. Be somebody. Somewhere.

For someone.

For those of you that may be reading this one day, perhaps you are going through a stroke as well?

I would like to offer hope.

More than anything.

Hope was the one thing that was taken away from me that I fully will never recover.

I am changed.

Change is.

Now I am. A new similar me.

A stroke, heart surgery, broken appendix, cholecystectomy, 3 x left sided pneumothorax. The 3rd collapsed lung was treated with a (at the time) new technique often used in the Soviet union. Patients with pneumothoraxes before me frequently lost their lung. —— more later.

The best way I can do this is to continue life as normal as I can make it. Remember that you are not alone. I created a Facebook group called “Young Stroke Experience” with about 2000 members. It is a private group, you can ask any questions you like and bond with others that have gone through the same things. Even though the consequences of stroke are individual and unique no stroke is the same. You are not alone though, most of us share enough disabilities to be able to emphasize . I know that it feels that way. After a large stroke, everyone is to some extent, in a highly personal state of locked-in syndrome. If you had a stroke in your left brain there’s a large chance that you lost the ability to understand language, ore speak. Everything sounds like a foreign language or a collection of unknown sounds.

Wernicke’s area is the region of the brain that is important for language development. It is located in the temporal lobe on the left side of the brain and is responsible for the comprehension of speech. Broca’s area on the other hand is related to the production of speech.

I played guitar, piano, every single day of my life. When I am making music many of my emotions have an outlet. Music helps me filtering through and making sense of the overwhelming noise of modern life. Music has always been a very large part of my life. I am grateful that I can listen to it and play keyboard. The first years post stroke I needed silence and plenty of alone time.My mind could not filter information and sounds in the same manner as before. Every external input wrote hundreds of pieces of music starting in the 80ies. The pieces are all recorded on 4v track cassette tapes that I’m unable to listen to. The sound quality is porobably terrible on most of them but my plan is to re-record the basic themes on piano so that all that music doesn’t vanish when its time for me to go.

This leads to the fact that I have amassed hundreds , if not thousands of hours of video. To be fair

The clot.

These are some changes that were imposed upon me via happenstance; a little clot in my brain. I had a stroke on a treadmill at the gym. More specifically a clot occluded the blood flow in my Anterior Cerebral Artery (ACA) which is medical speech for a major artery on the side of your head. Our arteries feed our brain fresh oxygen with every breath we take. Without this constant supply of fresh oxygen our brain starts do die. Like a heart infarct. Same thing but different organ.

Every second that goes by post stroke matters. Getting to the hospital fast is imperative and leads to a better outcome in terms of recovery.

In just a moment stroke can, and will, take everything away from you.

There went my ability to lift my arm! Oops, there went my leg! And wait for it, this is hilarious,! Now I can’t speak!

Am I dying? Is this it ?

Please God Im sorry I didn’t do better but I did my best.

Let me die now. Don’t keep me back. Not like this? Not as a cripple. That is just cruel.

(A man is talking to me.)

Im a doctor and the ambulance is on its way he says.

I tried to tell him that I had a stroke but the words did not come out right. As a Registered Nurse I knew what had happened to me. I desperately wanted to get to the hospital and have them infuse a clot-busting drug I’ve seen used professionally. The outcome of these drugs are generally good but one (fortunately uncommon) side effect is that you may bleed to death. In order to be eligible for TPA (drug name) one has to make it to the hospital within 2 hours or so. The reason for this limited window of time is due to a couple of things; after a couple of hours the damage TPa may cause is likely greater than the benefits. The damage done is not reversible so in those cases when patient don’t make it in time there’s not a whole lot medical science can do to prevent brain damage other than surgery (if possible).

Emotionally and physically I was as good as dead. I was facing the greatest challenge of my life. Today, 8 years later I still haven’t decided on whether my stroke was a good or bad life experience. Everything considered, perhaps the stroke was appropriate in some way? I can say with certainty once I lost control of my mind and body it was a complete surprise. Yes I lived hard and fast but not extremely so. I did live life at a pace that had to change and I tend to think that if the stroke hadn’t slowed me down I’d be dead.

Becoming more analytical/logical while becoming less emotional/artistic has played a major role in how I have recovered in the unique manner I have.

My relative level of recovery versus the amount of actual brain damage is probably better than good, but not excellent, considering the severe damage my brain suffered. No two strokes are the same. Every stroke survivor struggles to redefine themselves according to physical and mental disabilities. I was a relatively speaking fit 40 year old when I suffered my stroke. My maternal grandmother was 84 when she suffered a stroke (she later died from it). My paternal aunt died in her sisties from a stroke. I happened to be visiting her on a very remote island when she collapsed. I held her and spoke calmly, as calmly as I could while I asked her husband to call 911 and tell them to dispatch a helicopter.

Doris (my dear aunt) was life flighted away within an hour but she later died at the hospital. Stroke runs deep in my family. I knew from early on, professionally and personally, that the chances of recovery or even survival, were slim.

My maternal grandmother Judith survived her stroke. Survival does not equate quality of life. The thing about stroke and what I think of as “tragedy of survival” is that for many of us life after stroke is just a long dark painful night’s journey approaching death.

Judith’s care home was located about a 1-2 minute walk from the home she spent her her life in. She could imagine her home around the bend down the road a few hundred feet away. So close but yet so far away. It was torture for her. Every long quiet day in the wheelchair only interrupted by a few meals and brief visits from nurses. She felt humiliated. Every day someone came and washed her, fed her and changed her diaper. Her everything.Her home was just sitting there waiting for her to get better so that she could go home. At least this is what grandma thought. Obsessively and alone her mantra was; When can I go home?

None of my uncles or aunts had any experience in caring for a geriatric stroke survivor. Nor did any of them have the heart to tell grandma plainly that she would never be able to return home.

After several conversations with my family I decided to drive up to grandma with my late stage pregnant pregnant wife in tow. I had decided that I was going to take her home for a weekend.

All of Judith’s children had moved away. Her youngest son lived fairly close by and visited her weekly. The two of them had dinner together on weekends and Bertil (her son)helped in any way he could around the house.

I was excited to take grandma home for the first time after her paralysis and stroke. To this day I am not sure what I did expect. I wanted to achieve a couple of different things that proved to be lasting. As a nurse I knew I could take good care of her. I wasn’t worried about the upcoming weekend. The care home let me borrow an ambulatory chair. Grandmas house had one teeny tiny bathroom on the upper floor. There was no possibility for me to transfer her up the windy stairs. I drove to her home first with supplies and food.It was eery. I had not once been alone alone in grandma’s house. The usual scents of cooking, coffee and baking had been replaced by a sad and stale, almost unpleasant, sense of, death.

As I said before I wanted to take grandma home for a few reasons. One, I wanted her to be able to spend some time in her own home. Two, I wanted to show her kids that they too, will be able to bring her home on the weekends. Three, I thought it would be a good carrot for grandma. To spend some time at home, perhaps realizing that she may not be able to return. On her own terms – drawing her own conclusions. If possible I wanted to help her move on. Im not really sure.

It turned out to be a memorable couple of days. I had to redefine our lifelong roles and relationship. I was happy to take her home for a few days while my own heart was heavy with grief, sorrow and sadness. Our roles were changed they were reversed. I got to serve my grandmother now. Doing all things for her that she did for others her entire life. It was a humbling experience.

Seeing her so helpless was excruciating but in the end me bringing her home first was the cue my aunt and uncles needed. They started to take grandma home now. I didn’t fully realize what my grandmothers stroke bubble really was like. It is not possible to take it all in. She was always like a force of nature in the way that she was always doing something. Always. Even the times she sat down and had a little homemade cookie and a cup of perculated coffee were scheduled. Wake up at 6 – make coffee and have breakfast. Always open faced sandwiches made from her homemade bread. I never saw bread purchased at the store at my grandmothers. Then work until 11. At eleven sharp it was coffee time again. Then most amazing perculated coffee and a couple of little cookies. Then it was back to work until 2pm. Coffee and cookies for a few minutes again. She never sat for long, especially not if she was home alone but the point is she built a routine that she followed completely through life. She knew what needed to be done and did all of it but in her own pace. No stress – just life. She was a planner.

I don’t know that any of us really sat down and talked about what made her tick. It was obvious. She was content with the life she created for herself.

From waking up at 6 am every morning to get on with the chores of the day ahead such as; shovel snow, pick and can fruits and vegetables. Bake, cook, read, sew and always send a birthday card with a little money to all of her grand and great grand children.

In short, living a life completely unhindered by anyone or anything. Judith never relied on anybody else’s help until she was 84 years old. Not once.

Surviving with massive disabilities after a stroke is a conundrum and sometimes a curse. To survive is at times a grotesque bad joke. I didn’t realize all of this at the time. I was just so happy that grandma was still with us. No matter how or why.

I realized something about grandma Judith that I never thought about before she became ill. I had never seen her under the weather. Never. She was consist in her moods, actions and health. When asking around none of her closest friends or extended family could not recall that she ever complained about life’s struggle. I can either. Judith was the rock of our family. Always ready, welcoming us all to stay in her warm comforting home.

My dear grandmother spent every remaining day of the rest of her life wanting to die.The doctors gave her anti depressants that did not work. She wanted to go home and live independently. Not being able to do that Judith lived in tiny coastal village her entire life. She got married to Ernst (my maternal grandfather) right before WW2. Ernst and Judith spent a lifetime together. Together, they built a home and raised 6 children in it, including my mother. Ernst died from a heart attack at the age of 70. Judith struggled on alone for another 20 years. A few years after Ernsts’ passing she had adapted and found joy in life again.

Her strength and grace. Seeing her pale face hidden behind a veil. Black dress.Stoically, she went on, and on and on. She never spoke about depression or anxiety. A very matter of fact transactional presence. We were all convinced that she loved us all equally. And that ladies and gentlemen is what its all about. Right? After were dead? The ones we leave behind shoul’d all feel special and loved. You and I both know that’s what’s ahead. Death.

And after?

I have absolutely no idea. Normally I would ask people around me if they knew anything about a certain something. To make conversation.

Nobody knows.

Nobody. Not you, not me or anybody else.

Nobody fucking knows because of why?

Why? Why?

Because when you’re dead you’re dead. Thats it. Be grateful every minute of your unique life experience. Be present. Force your mind to find creative ways for you to hang on to.I feel like that’s all were doing anyway – hanging on. Sometimes barely. So little time. So much to do, to learn, to taste, to smell, to love. to give. to be kind and considerate version of ourselves, for ourself and as an extension of all our relationships with everybody around us.

Smile at people. Be open and approachable. Explore all the healing relationships we have all around us. Extend friendship, companionship a little of yourself for a great return. Smile at strangers. Look them in the eye as you pass. Nod.

Strike up casual conversations with the around you. Ask one person a day if there is anything you can help them

It is far to easy to get stuck in some stagnant everlasting sense of being a middle aged man.

Ive been guilty of wasting my life away for a couple of months. After living in a constant workplace. Dust. Cutting. Measuring. Mixing. Lifting.Home Depot. Load after load of tools and supplies. Home improvement. I love what Ive done to the house but my brain said. No.

I live big. I love big. I grieve big. Im bored big. Im even big in my nothingness.

A low humming, undefinable and very draining anxiety disorder. Who? How? And why? When? What? Churn impressions. Observe. Assess. Preparedness. Paranoia.

Yes even paranoia in reasonable doses is probably helpful.

Our journey as such, in terms of daily afflictions consist of more information than we can possibly handle in the long run. We are stress testing our nervous system daily constantly via a mass of cyber messages that affect us mentally and as a continuation of stress leads to physical decompensation. A complex web of information channels penetrate our minds. Our screens are facilitators. Maybe pimps. The truth is that we have jacked up our endocrine system as much as can be done without it breaking. Our stress levels are at a constant high. Dopamin is pumping – saturating our brains with squirts of feel good rewards. Adrenaline is at a somewhat high to high level. Cortisol is coming. All men to the pumps!

We are always in a state of anticipation. Reactionary. In wait. Social media penetrating the personal defense of our deepest and most intimate emotional quarters. It affects us. More than we know it leads to a sense of disconnect with the real world.

We are making us.Every day we have one responsibility and that is to contribute to the world around us. I get that its comfy to have this imaginary deity friend who also is your father guide every choice you make in life. I really don’t mind. Damage control. Always in defense mode. Being stuck in the middle of an imaginary trench war far. Thats the mode I’ve been in since I was a child. Constantly assessing. Scanning. Processing an enormous amount of algorithms/energy. I was a leaking energy valve. Completely and utterly unable to stop. Everything mattered. A lot. All of it. Genuinely curious but prone to dark thoughts. The dark times have been many. Curiously, after two encounters with death I’m not afraid anymore. I also have far more good days now than I had before my illness.

I don’t have a lot of memories from when I was little. I wish I did but I think I was always too preoccupied by the mysterious world around me. Always alone. Even when not. Alone, but surrounded by people and friends. My brain has always been running on overdrive.

She was an amazingly strong matriarch and all of us children turned to her in times of crisis. She provided consistency a sense of having a quit port to take cover in when it storms.Judith came from, and grew up in, a society where the indispensable female of age worked 27 – 7. She lived in a different world. Preoccupied by absolute male domination. For thousands of years women have been used, raped, bred, controlled and subservient. Grandma had her own vibe. She was sharp and listened to every word that was uttered around her in a full room. Always working, cooking, serving those around her. No questions asked. It was just the way it was with her. Ernst and Judith, my beacons of light. When everything and everybody else crumbled. They were there. Caring and loving. Non confrontational. I could go there and tend to my wounds. Mental mostly.

Judith was discharged from the hospital to a care home. After a life time of activity. Constantly baking, cooking, cleaning, gardening she was now confined to a life in a wheel chair. The care home was the best of the best. Judith was well looked after by nurses and helpers that she had known most of her life. She lived in the kind of village where everybody knew everything about everybody. At the time I lived in a big city a couple of hours away so I decided to go up and visit Judith now that she was out of the hospital. The room she was in was cute and clean. Her main windows overlooked to road. As I walked in to the dimly lit room, in front of me, in a wheel chair facing the window I saw this shriveled up old woman half asleep.

8 years ago I was confined to a wheelchair. I suffered from a complete left sided paralysis and to boot, an overwhelming brain fog that made it impossible to think straight. Add to this an absolutely intense urge to commit suicide coupled with a deep depression. Every moment of every day, Little by little I started to realize that the things in life that made me, me were not for me anymore. Mountain biking. Going to the climbing gym, Going for walks

Who am I if I can’t play music? How do I work as a RN with one good arm? will I die from a second stroke now that I had the first? Why did I have a stroke in the first place and how do I find out? Bit by bit, the mental decompensation is inevitable once one realizes that whoever you were before is gone. For good. You are back at toddler level. A partially paralyzed toddler with uncontrollable spurts of anger. Most abilities gone. Brain succumbing of guilt when you see your partner trying to maintain an upbeat outlook.

You’ll be right back up! It will take time the doctor said and that abilities not back in 6-12 months will most likely (medical speak for never) not return. We still have time. When the swelling of the brain has gone down…

As a stroke survivor you go through some amazing challenges.

More about that another time.

The 2020 u.s election and continuation of the American zero sum

Many, including myself, expected a blue wave in the u.s election after 4 years of Donald Trump’s, to put it mildly, tumultuous presidency. Many, including leading republicans feared a “bloodbath” (Senator Cruz) while most democrats expected that the upcoming election would be a true litmus test of what some believe to be, I assume, an innately moral, just and fair American psyche and that the people would dispatch Trumpism deep underground in the corner of some forgotten political graveyard.

Today about 10 days has passed since November 3rd and the blue wave did not materialize. As relieved many Americans are that voted for a less contentious candidate in Joseph Biden the Democratic Party remains sorely disappointed and flabbergasted at how close the election ended up.

The fact that the election was close to a tie raises a slew of questions. Such as where are we today? And perhaps more importantly, 70 millions Americans voted for Donald Trump despite his apparent lack of decency, empathy and open disdain for at least half of the citizens of the country.

Donald Trump the man is going to be replaced as president of the United States, at noon exactly, on January 20th 2021 but will he as most presidents before him go quietly? Will Donald Trump uphold the long practiced tradition of the presidents before him to abstain from criticizing his presidential successor or to not actively partake in daily political discourse?

We will see, the future is not set in stone but a not so terribly wild guess may be that Mr Trump will continue to be a part of the nations daily narrative. After all, Donald Trump has been a media conductor of seldom seen ability. Trump has single handedly controlled the narrative since he joined the Republican race for president in 2015. Trump is a narcissist through and through. Controlling the narrative and a deep need to constantly being in the limelight is as important to his particular personality type as oxygen is for the more neurotypical rest of us. If we can’t breathe we wither and die. If Donald Trump is not center stage, then Donald Trump withers and dies.

The now.

11 days in since the AP called the election in favor of Biden/Harris and Trump has been crystal clear in that he is not planning on conceding. Trump called the election for himself late on election night. Many of us went to bed anticipating another 4 years with Trump in the White House.Now if and only if Election 2020 were a “normal” election? Trumps early assumption of having won would prove to be incorrect despite how in what manner earlier elections have been decided and at what time. Heres the difference; nothing about this election is “normal”. The Covid pandemic has completely altered which method most Americans utilize to get their vote in. Mail in ballots, provisional, military. So a pandemic completely changed the pace of how the election unfolded.

Why did so many Trump supporters elect to vote in person as opposed to using the safer and more convenient option of mailing in their ballots or at the very lest deliver the ballots by themselves? The answer may be that Trumpers to a very large extent believe that the pandemic is a political tool for democrats to oust Trump. This general disbelief toward science and a deeply corrupt (deep state) federal government, in turn changes how Trumpers will act in relation to wearing a mask or practicing social distancing. Lets not forget the intention and optics of “taking a stand against fake news”. Im going voting in person on Election Day!

There was more and more talk of a “Red Mirage” on Election Day, meaning that this scenario of behavior did not transcend party colors, democrats used mail in ballots and republicans vote on Election Day . As the vote started to come in and be reported the red mirage scenario seemed more correct than ever. Trump was clearly in the lead due to the fact that in person Election Day votes are reported first. In some states the mail in ballots are not counted until after the count of election day votes is done. In some instances ballots that were mailed on election day keeps on coming in for several days post the election. The fact that Trump would look good early was widely reported and anticipated in both parties. Republican leadership all knew that they were facing an onslaught of millions and millions of mail in ballots and that the majority of those would be blue.

Republicans are, whether real or not, convinced that they are in a war for something that could be interpreted as an “uninterrupted continuum of white race domination”. The white man conquered and forever altered the future of its colonies. Later turned service stations,

Take anything you want. All you see belongs to the company and crown now! Everything of value, oil, minerals, food and humans. Not to mention; the master race perfected “the essentials of racism.” The master race also executed essential racism and furthering the power narrative based on some pseudo science called eugenics. Black bad! White good! Black serve! White rule! The creation of hierarchies based solely on the color of ones skin was really brilliant. Like selling sand in Sahara or ice on the northpole. Selling a value based narrative that superiority and being white is essentially identical parts of a concept. Power doesn’t always equal physical strength or having other abilities Not skill or ability. Not strength or fitness .Forcefully, an ancient way of life. Everything of value (the queens collection of jewelry currently on display in the tower oof London were stolen from and carved off the walls of the great temple of Agra in India).

Is the main purpose of conquest and rule to continue to enforce a new set of power differentials and in doing so, maintaining a conviction that the natives will be better off as servants and educated in the ways of civilization. Power, firmly based in the ideology of eugenics, Execution of British power at the time was based on a number of reasons but one part each of; strength, unity, brutality, made it possible to conquer and took over faraway lands while also implementing British style “Rule of law”. Often in a violently harsh manner european traditions such as, religion, language, economy architecture, level of refinement, worth, race. Life as it once were before invader came and wiped the slate completely clean. Thousands of years of culture, Gone.

Ok, enough thoughts for you. More to come soon!