Tuesday, August 7, 2018

Twitter and Aphasia

 After my stroke 6 1/2 years ago, my wife let me have my phone. I was dazed and confused but I wanted to check to see if I could even use my phone. 

The first thing I did was to login to Twitter to check news. The 140 character Twitter app what is a convenient way for me to read news.

Unfortunately, even though it was only 140 characters, I could not read the news. I cannot understand and comprehend letters and numbers. 

During my rehab stint, my therapist was trying to explain to me about Aphasia. Reading comprehension difficulties are a common feature of aphasia, affecting the understanding of single words, sentences, paragraphs and extended text. 

Though Aphasia is not curable, through years of therapy and compensating, I have gotten better. 

Recently, I bought an Amazon Fire Stick. To set it up, I had to enter my password and my user ID.

For years after my strokes, I simply could not complete that task. Often, though embarrassing, I would ask my young son to enter all the information. It was just beyond me.

I would try to complete it carefully. Nevertheless, I just could not do it. In addition, concentrating so hard caused massive headaches.

Last week, I registered the new Fire Stick with no problems at all. I completed it in one try. 

Certainly, the Aphasia made it difficult. On the TV screen I would have to punch every letter carefully and firm every letter was correct.

It was cumbersome and time-consuming. Yet I celebrated that small victory. 

We all have to celebrate small victories.


Saturday, July 28, 2018

Headaches and strokes


A lot of my childhood memories for earaches. I had chronic earaches.

I would pray to make the pain stop. Sometimes when I would wake up there would be blood on my pillow and I was actually happy.
In my childhood brain, blood meant that my eardrum would rupture and the pain would go away.

Even now, in my 50s, doctors often comment that I have so much scar tissue on my eardrums.

The earaches went away when I was about 10 years. When I was 50 years old, my strokes happened. As a result I have chronic headaches.

When I was a little boy, my mom would hold me and whispered to me saying "I want to take your pain away." She had a beautiful singing voice and she would sing soft lullabies to me so I could fall asleep despite the pain.

Today is an especially painful headache day. I miss my mom anyway. She died almost 6 years ago.
Upstairs in a darkened cool bedroom I’m dealing with my headache pain. I really wish my mom would sing a lullaby to me.

Friday, July 27, 2018

Support Groups


Are my strokes 6 1/2 years ago, I attended some local stroke support groups. As my brain cleared through the months, I became more aware of my conditions.

I wanted to explore "me." What is Aphasia? What are the statistics? How can I reach out to other survivors?

I started to do some online research about strokes and aphasia. Though reading was still difficult, I researched as much as I could. I wanted more.

"More" in the sense that I wanted to reach out to people like me: Younger stroke survivors with Aphasia. When I would attend stroke support groups, most of the time the survivors were much older than me. I craved interaction with people who could understand my issues.

And I had many issues. I lost my career and my income. I had a young son. Lost my identity in a sense. How was I going to fill up my days? With Aphasia, not even pursue my hobbies such as reading and woodworking.

I do love my older stroke survivor friends, but most of the people who attend stroke survivor groups are all retired people. Several of my younger survivors talked about decades of illness, boredom, worrying about money, etc.

I was 50 years old when my strokes happened. I was on the top of my game and in one instant I crashed and burned. Was I going to deal with this for another 35 or 40 years?

I needed something different to look forward to. I wanted more resources to help me.
Again I searched the Internet. Out of the blue, Facebook I found out that there are so many stroke and Aphasia support groups online.

Though the survivors are essentially strangers to me, we have been connected through this exclusive club that nobody wants to join: survivors.

Despite Facebook flaws, I have joined so many stroke and aphasia support groups on Facebook. I often get tips and support.
O
ften, I support others are going through tough times.
At the same time, Idaho State University conducted intense two week aphasia workshop. I was a participant in June of 2012. It was a great program with one and one and group activities. The eight participants had different degrees of Aphasia.

Two years later, ISU asked several participants to start a new local stroke and aphasia group. Four of us are grade and with the university’s resources we started. Three months later, we were on our own.

I became the chair of the group several years ago. I was committed to use technology to help people. I started the Idaho Aphasia Facebook page.

Every week, try to put more content on our Facebook page. Most every day, I have posted videos some sort.

Often the content is through other aphasia and stroke support Facebook pages.

Through my own Idaho Aphasia stroke support group on Facebook, I have reached more people then I ever could’ve imagined.

Last week, I did my own presentation at our group. I go to school sometimes talk about stroke, aphasia, recovery and hope. I put my presentation on YouTube and posted it on many other Facebook stroke groups. As a result, more than 800 people throughout the world have watched my presentation.

Stroke and Aphasia are lonely conditions. Especially with Aphasia when you have trouble communicating in many ways. You feel trapped in your head.

Through technology, online stroke support resources, and YouTube videos isolation of stroke and aphasia is better than I thought.

I’m so grateful that I have these friends all of the world share my same story.

Monday, July 23, 2018

Us Versus Them


We were invited to a brunch to celebrate a friend’s mom’s award as the "Congregant of the Year" at her church.

At the brunch, most of the people were pretty elderly. As one older woman was leaving, out of the blue she said, "Oh this must be the Republican table." 

"What," I responded?

She confirmed that she heard that we were the Republicans in the group. Nervous laughter ensued because none of our group voted for the current president. 

In fact, a close friend of mine at the brunch might be a Democratic Socialist. 

None of us voted for Trump or Hillary Clinton. Two horrible candidates so we voted for other people for our own self respect.

Nevertheless we had to defend ourselves for no reason. 

I realized at that brunch, that the political venom is getting so personal that a geriatric political progressive needs to chastise people she doesn’t know anything about.

I used the term "political progressive" on purpose. This woman stereotyped without knowing anything about us. I don’t know anything about her also. When she said that statement out of the blue, I thought about Representative Maxine Waters angrily telling her supporters to chastise Trump and his staffers.

 

I thought about telling her that yet I realized that that would confirm her suspicions about me even though I do not agree with President Trump.

The whole point of this post is that the political vitriol is getting so extreme even a religious brunch to celebrate an old woman’s church award is now political.

Sad.

Tuesday, July 17, 2018

100 years ago today a boy was murdered

100 years ago today, Czar Nicholas II and his entire family were executed in a bloody basement room.

Vladimir Lenin, the Bolshevik leader, ordered the murders. The tragedy of this murdered family paled in comparison to the tens of millions murders throughout communist history. Nicholas and his family were just the start decades of carnage because of the Communist Party.

Nicholas was incompetent at best. He was an inept demagogue. He was vain, isolated, and relatively stupid.

Romanovs also killed many people during their 300 year reign. Certainly I am not excusing the brutality of Russian life.

Nevertheless, the backstory was a personal family tragedy. They had five children and the youngest was the only boy.

He was born with hemophilia because of his mother, one of Queen Victoria‘s granddaughters.

The royal houses of Europe were ripe with first cousins marrying first cousins. Hemophilia was the result.

This personal tragedy was kept secret because of political implications.

As Nicholas and Alexandra cared for their son, they became even more isolated and out of touch. They tried everything. In a vain attempt to save their toddler’s life, they met the "mad monk" Rasputin.

Alexandra was convinced that he would save their son’s life. In the midst of this, World War I started.

As an aside, the three rulers at the start of the war were first cousins: Kaiser Wilhelm, King George of Great Britain, and Czar Nicholas. Cousins often fight at Thanksgiving, but these people had armies!


Nicholas was always incompetent as ruler. But leading his troops during the war was even worse. Indecisive and arrogant, Nicholas finally had to abdicate.

Unfortunately the damage was done. When Nicholas was leading his troops into defeat for years, Alexandra tried to govern. In reality, her sounding board was Rasputin. He was the puppet behind the throne. There were riots and famine. It got worse over time.

In this awful power vacuum, Lenin swooped in (fronted by Nicholas’s first cousin - yet enemy - Kaiser Wilhelm) and took control of the whole country.

 I have always been a Russian history buff. Hundred years ago today, a small family was murdered in basement.

It was a personal yet a political tragedy.

I often wonder about that little boy. He was murdered when he was 14 years old, shot in the head first, shot multiple times and then bayoneted.

My son is 13.

If Alexei Romanov had not been born with hemophilia, perhaps the whole world would’ve been different.

Perhaps. Idle speculation.

Sunday, June 24, 2018

CT scans and bruising


My two strokes were 6 1/2 years ago. Ever since I’ve had headaches.

Recently, I have had a new kind of headache which caused my neurologist to order another CT scan. Usually a CT scan is about a 15 minute process.

However, I’ve always had "difficulty veins." Nurses have always had difficulty finding a vein to insert an IV.

As an elected official and a former lobbyist, I have a thick skin. Who knew underneath that tough skin is a mishmash of bad veins!

Recently, I was poked and prodded for three hours. Finally a neurosurgeon used an ultrasound to find a vein. He still had difficulty.

As a result, my bruises have a wide range of colors!
The doctor, nurses and the radiologists kept saying that I am "such a kind and patient man." It’s not their fault and screams are overrated.

The good news is, the CT scan showed NO new brain damage. The bad news is six years of headaches with no relief.
But I’m still alive!

Thursday, June 14, 2018

The sounds of silence

Recently, my wife mentioned started my blog 10 years ago. She also noticed but I have not really bloggod for months and months. That is completely true.

I started my blog to keep track of memories of our son. My blog changed focused years ago when I had my strokes.

Since my stroke 6 1/2 years ago, I’ve tried to write about my stroke experience. Honestly, gotten feedback that I should just "get over it." It is time to move on.

At the same time, I was subjected to Internet trolls. For a while I thought about fighting back, because I am a middle aged white male, my opinions don’t really matter because I am "privileged."

A year ago when I was confronted with Internet trolls, I had to find a definition:
"A troll will use shock value to promote arguments in conversations, commonly in Facebook threads and in public online discussions. Named after the wicked troll creatures of children's tales, an internet troll is someone who stirs up drama and abuses their online anonymity by purposely sowing hatred, bigotry, racism, misogyny, or just simple bickering between others."

This is a really good definition. However, my Internet trolls were not anonymous. These trolls blatantly called me out for my opinion.

The reaction was swift and horrifying. Responding to a friend’s social media post, I suggested that her words would hurt her reputation. It was a very benign post.
In response, I was subjected to disgusting Internet troll. Laced with profanity, the bottom line was my opinion doesn’t matter at all because I am "A white privileged middle-aged male." Therefore my opinions don’t matter.

I endured the trolls for a while. I actually thought that some of the comments were pretty funny because the trolls are so hypocritical. I found it ironic when women would tell me that I was mansplaining. Talk about the pot calling the kettle black. Here is my new term: "womanspaining."

But it did not stop.

Therefore, I took a pause on social media for a couple of weeks and now months.  I used the time to reflect on the situation. I thought about my own biases.

I do completely understand that I am pretty lucky because I have not had to deal with a lot of prejudice in my life.

I also started to research social media privacy settings. I only use Facebook and Twitter. I researched those settings to make sure that I felt safe online.

I deleted hundreds and hundreds of so-called followers and friends. I made sure that I had strict protocols and privacy settings.

And finally, despite all of this, I still feel that my views don’t matter anymore. Throughout my life, tried to be a good person and to be fair to all. But I am again I am a middle-aged white male so I am to privileged unless progressives agree with me.

I do know the strokes cause emotions to change. Maybe I am too sensitive or too paranoid.
But I will try to blog again. But I do feel that my opinion is not valid anymore.