Sunday, July 31, 2016

Ghost life

Yesterday, I was deleting a whole bunch of old computer files because I am donating an old laptop.

This laptop was the state of the art when I bought it in 06. I bought it when I cofounded a real estate school and I used it until my stroke in 12.

I couldn't use the laptop after my stroke simply because it was confusing to me. 

Therefore, opening old files was like opening a ghost life.

I had thousands of emails from Envision Real Estate School, Boise State University, Idaho Commerce and Industry, and the Idaho Associated General-Contractors.

For many years, long before Hillary Clinton had a private email server, I used two laptops: Company ones and my HP laptop.

I have a habit of copying important emails from my work laptop and my HP private laptop. "Just in case."

Opening old emails trying to clear sensitive information was like opening a window to a forgotten world.

Real estate matters, strategic confidential emails plotting legislative tactics, often funny yet profane observations about work life between friends and me, sensitive contract negotiations, and every day things like lunch plans and recipes. Thousands....

Glancing through those emails was sad in a way. I remember being so busy and secure in my own thoughts and plans.

Was that really "me?" How could I juggle everything that I did? 

After my stroke, my neurologist said that I am a "ruminator." In my head I was always thinking strategically about work, life, and family. 

The ruminations did not stop after my strokes. Rather, my brain "short-circuited" my plans and hopes.

When I emerged from the brain fog, I had no idea about what I lost. I was just grappling to live day to day.

Recently when I chaired a stroke support group, a caregiver said, "I remember you! You were the 'guy!' You're a legend." 

I was startled. Embarrassing! Even now it doesn't seem that was me.

Opening thousands of emails and glancing into my life on a old laptop, was a stark reminder my "old normal."

But I need to move on. I could grieve about my old life and think about all of those emails.

Or, I could format the hard drive to erase everything. And that's what I did. 

I deleted my phantom life.

Tuesday, July 19, 2016

"Anomic Aphasia and me!"

Yesterday I had a doctors appointment. My wife is out of town and my son was still asleep when I left.

Therefore, I wrote a note for our son to explain. Same handwriting! No misspellings other than a dog's name.

The phrase "wrote a note" would seem to be second nature. 

However, when you have aphasia, simple every day tasks sometimes are an unbearable struggle.

For several years since my strokes, writing a simple note was incredibly difficult.

When I try to write notes, I have to concentrate on every single letter. I used to be a grammar and spelling whiz. Today, my spelling skills are at best mediocre.

That same doctors appointment, I had to fill out work. I had to write down our pharmacy which is "Fred Meyer on Franklin and Orchard."

I had problems remembering the spelling of "Meyer." I could not remember how to spell "orchard." 

Recently, noticed that filling out paperwork or writing notes are getting better if I "speak" what I need to write.

My wife has noticed that when I type my blog or write a note I "speak it" also.

Certainly, I am compensating. Subtly, I seem to be recovering to the point where simple written communication is getting a little better.

Recently, our Idaho Aphasia Support Group heard a presentation about different forms of Aphasia.   

It seems that I have a form of aphasia called "Anomic" with a little bit of "conduction aphasia" for good measure. 

According to Wikipedia, 

"Anomic aphasia is one of the milder forms of aphasia. The term is applied to persons who are left with a persistent inability to supply the words for the very things they want to talk about, particularly the significant nouns and verbs. Their speech is fluent and grammatically correct but it is full of vague words (such as ‘thing’) and circumlocutions (attempts to describe the word they are trying to find). The feeling is often that of having the word on the tip of one’s tongue, which results in their speech having lots of expressions of frustration. 

People with anomic aphasia understand speech well and they can repeat words and sentences.  In most cases they can read adequately. Difficulty finding words is as evident in writing as it is in speech."

That is the textbook definition. It describes me better than most definitions. However, I don't struggle with nouns and verbs. I struggle with prepositions or "connector words." It is rare for me to struggle for "words." I understand financials, but I cannot calculate or ask questions about math because of the conduction part of my aphasia. 

Just like every stroke is different, my aphasia is different.

My aphasia is better than most. I made only one typo: "Lucy" versus "Lusy!" Not bad.

Pretty grateful.

Thursday, July 14, 2016

Stroke and Bullshit

Yesterday, I met a new stroke survivor. She wept.

Her stroke was 2 months ago. She cannot speak well. She has aphasia. She has some paralysis.

I met her at a stroke support group. I have often said that “Stroke survivors are an exclusive club that no one ever wants to join.”  

Like it or not, she has joined our club.

Her emotions are incredibly raw. At our group, all of our survivors tried to say “it will get better.” And it will.

Nevertheless, we said it is OK to be pissed off and angry. “People” (in other words, non-stroke individuals) say things like “It’s God’s plan” or “This is your new reality.” The one that I detest the most is "my new normal."

Really? Most survivors – if they can talk at all – respond to be polite:  “Well, excuse me! That advice really helps! Thank you! I never thought about that.”

Inside our broken brains, we are saying “bullshit.”  You have NO idea what we go through every single day.

New survivors are always told “you are a survivor not a victim.” We cannot feel sorry for ourselves for too long.  Our victimhood will only last for a moment. 

Then, the recovery mode kicks us in the ass.

"People" say things like "Your stroke should not define life." Again, that sentiment is great until you live it. Again, "bullshit." 

Also yesterday, I found out that another stroke survivor is now divorced and living with his mother. He is 60 years old. His wife of 40 years could not handle “God’s plan.”

The new survivor implied she cannot deal with this situation. Through her tears, unable to communicate, she hinted “I would rather die.”

I get it. I felt it.

All of us get it.

We tried to comfort her and her husband. For example, she is recovering pretty well for her new 2 month truth. At two month after my strokes, I could not attend a stroke support group. All of us told them “it will get better.

Nevertheless, it is bitter pill to swallow. You can overdose and die, or just keep trying and trying.

Survivor or victim. Depends on the day.