Wednesday, September 19, 2018

Fake friends?


Every Wednesday, I attend the Idaho Aphasia, Apraxia, and Dysarthria Support Group which is basically a support group for stroke survivors.

Today we shared our experiences like losing friendships after strokes. 

It was an eye-opening session for me. All afternoon I’ve been thinking about real friendships. 

My mom died almost 6 years ago. On her deathbed, she bluntly told me "Maybe your strokes were a blessing. You can feel sorry for yourself or you can make a difference. You have a choice to make."

Every week I am blessed to gather with my fellow stroke warriors. I am so grateful for their strength. 

Mom was right.


Nevertheless, I did lose a lot of friends after my strokes. Many survivors tell the same story.

Some fell away because they were so despondent about the "new me." I get it but it’s sad.

Some so-called friends disappeared because I was not useful anymore. I didn’t have a political action committee perhaps? 

Some friends were supportive. For a year or two. But this is a lifetime sentence.

Some call to "catch up" and then I realize they need something. A little political insight? Background information on a business issue? 

But I do have real true unwavering friendships that I cherish.

I love those friends and family. Thank you. You know who you are.

A couple of years ago, I deleted at least 600 " "friends and followers" from Facebook and Twitter. I was subjected to bullying trolls mainly for political reasons.

After today’s session, I really thought about the value of real friendships. 

When you almost die or when your son gets illness, I have decided I’m not gonna waste my time dealing with toxic people, fake friendships and users. The purge will continue.

For my fellow stroke warriors, this article is for you:

https://www.psychologytoday.com/us/blog/resolution-not-conflict/201603/8-signs-toxic-friendship

Tuesday, September 18, 2018

Nick Lowe and good intentions

"Cruel to Be Kind" is a 1979 single by Nick Lowe and it was a favorite song of mine in high school.

The sentiments are pretty appropriate now. So many people believe that they have to be cruel to be kind to deal with the emotions my strokes and my son’s celiac disease.

I have joined so many Facebook groups dealing with strokes, aphasia, and celiac disease. Those online support groups are incredibly helpful for me.

With those three conditions our family has experienced, the common thread often is "It’s God‘s will" or "it will just take time to adjust."

Though well-intentioned, often people say "I have to say this. I know it’s hard. But I have to be cruel to be kind let you know that need to just buck up and accept this new reality."

Really?


Today, a stroke survivor on Facebook lamented that her brother basically said, "We’re all tired of your shit. Just get over it and move on. We’ve moved on. I don’t think you realize how much your stroke has affected everybody else in your life, I’m telling you to just stop dwelling on the past."

In other words paraphrasing this common sentiment "I know better than you so I’m telling you this to be cruel to be kind."

It seems people say things like that because "we are too close to the reality and don’t understand what’s really happening." 

My son’s celiac diagnosis is pretty recent. Yet I’ve already had people tell me that "Just make him change his diet right now. He just has to accept it. He’s always been picky and he needs to buck up."

It’s just not that easy. Adolescence is tough anyway with hormones, peer pressure, not wanting to be different, etc. Then you have the added pressure of this confusing and scary disease?

So when people say just get over it, I call bullshit.

It’s just not eating gluten free stuff. There is a wholesale lifestyle change such as cleaning out pantry’s, spices, cutting boards, toasters, shampoo, cosmetics, etc. Gluten is in everything. 

Just like with my strokes, it is hard to get over celiac disease. 


So when well-meaning yet uninformed people it is tough for me to keep my mouth shut. 

No, "He can’t just cheat for holidays. How about on Sundays?"

I think I might have to be cruel to be kind and say "just shut the hell up."

It’s like the old adage. You cannot be a little pregnant. It means it is a situation in which there is no ambiguity or no gray area.


There’s no gray area. I had two strokes. I have fibromuscular dysplasia. I have a aphasia. My son has celiac disease. 

My wife asked to deal with of this. She is a saint. Yet when people are so arrogant about her reality and trying to be cruel to be kind, it infuriates me. She doesn’t deserve this.

This is a lifetime sentence, and people think that it’s cruel to be kind when they have no idea about our reality.

Saturday, September 15, 2018

Sinatra and my son

When my son was diagnosed with celiac disease about a month ago, we have had ups and downs. He’s missed several days of school because of the illness.

A couple of days ago, he sick and he missed his morning classes. We let him sleep in.

I laid on the bed with him with his dog. I watched him for half hour in the dark. I stroked his brow. It was so peaceful.


About a beautiful song recorded by Frank Sinatra. This lyric summed up my feelings that morning:

"Quiet thoughts and quiet dreams,

Quiet walks by quiet streams,

And a window looking on the mountains and the sea, oh how lovely."

It was lovely morning and I lovely memory my son.

    


Tuesday, September 11, 2018

Am I a hollow man?



6 1/2 years since my strokes, I am dealing with a new challenge involving my son. Recently he was diagnosed with celiac disease.

Dealing with the aftermath of my strokes was challenging physically and emotionally.
Yet, this diagnosis is heartbreaking.

Certainly, it is not fatal and will be controlled by a life long diet.
Nevertheless, I am struggling to keep it together.

I’ve always been a strong person. Despite my strokes and my brain damage, I try to continue to lead a normal life.

Since the diagnosis of my son’s celiac disease, I’m struggling to find answers about the effect of my strokes and my son’s diagnosis.

With my strokes and my Aphasia, meaningful communication is difficult. How can I find words to comfort my son? How can I find the words to help him deal with his 13-year-old emotions. I cannot even help with his homework.

Research shown that personality changes are common after a stroke. Despite my best efforts I "fake it" a lot. Honestly, every day is struggle. I try not to let people know the affects of my strokes. I am not ashamed of my strokes. I do not try to hide my brain damage and the Aphasia. However, given the emotional toll of my sons diagnosis, I need to realize that I cannot dwell in my sorrows.

Today I read an British article about personality changes after a stroke.

"Personality changes: After a stroke, existing personality traits can become exaggerated. Alternatively, people can behave in ways that are out of character for them. Personality changes after a stroke can include:

  1. Not feeling like doing anything.
  2 Being irritable or aggressive.
  3. Being disinhibited – saying or doing things that seem inappropriate to others.
  4. Being impulsive – acting without thinking, and doing things that are not safe or are not appropriate."

"Sometimes changes in behavior are aimed only at the people closest to the stroke survivor. This is quite normal. Most of us only show the more difficult parts of ourselves to the people we are closest to because we know they will probably forgive us. However, if the behavior is extreme it can isolate us from the people around us. Sometimes, stroke survivors do not realize that their behavior or personality is different. This can make it difficult to address these changes."

One line in the article it home to me: "Behavior is extreme it can isolate us from the people around us."

My son’s diagnosis -- though recent -- has simply isolated me even more. I feel isolated from my son, my wife, family, friends, and people who depend on me.

It seems that I am struggling to keep my emotions in check. With my Aphasia, I have to pick my words carefully. But I find that I get too angry and emotional to deal with the situation.

Therefore, I have become silent and I deal with this alone.

One of my favorite poems is T. S. Eliot "The Hollow Man."

"Shape without form, shade without color,
Paralyzed force, gesture without motion;
Those who have crossed
With direct eyes, to death's other Kingdom Remember us-if at all-not as lost, Violent souls, but only, As the hollow men."

I feel like a hollow man. Isolated and alone, dealing with my strokes and my son’s illness.

Hollow.

Monday, September 3, 2018

Celiac disease and "Textbook" answers







Recently, our son was diagnosed with celiac disease. Here is the textbook definition:

"Celiac disease is a serious autoimmune disorder that can occur in genetically predisposed people where the ingestion of gluten leads to damage in the small intestine. It is estimated to affect 1 in 100 people worldwide. Two and one-half million Americans are undiagnosed and are at risk for long-term health complications."

"When people with celiac disease eat gluten (a protein found in wheat, rye and barley), their body mounts an immune response that attacks the small intestine. These attacks lead to damage on the villi, small fingerlike projections that line the small intestine, that promote nutrient absorption. When the villi get damaged, nutrients cannot be absorbed properly into the body."

Bottom line for victims like my son?

These are the things that can happen:
 • Anemia, usually resulting from iron deficiency
 • Loss of bone density (osteoporosis) or softening of bone (osteomalacia)
 • Itchy, blistery skin rash (dermatitis herpetiformis)
 • Damage to dental enamel
 • Mouth ulcers
 • Headaches and fatigue
 • Nervous system injury, including numbness and tingling in the feet and hands, possible problems with balance, and cognitive impairment
 • Joint pain
 • Reduced functioning of the spleen (hyposplenism)
 • Acid reflux and heartburn

Textbook.

It’s not a textbook example when three years ago our fifth-grade son complained of stomach aches and cramps and nothing helped.

It is not textbook when for three years we took him to doctors who missed the symptoms of this incurable disease.

It is not textbook when people think that "he’ll get over it in time."

It is not textbook people say "he’s just a picky eater."

It is not textbook when people called him lazy and faking his sickness.

It’s not textbook when your son is so depressed and fatigued that he just doesn’t want to live.

It is not textbook people think that gluten-free is a fad.

It is not textbook that people think that it’s just gluten intolerance, not a real disease, or you can take a pill.

It is not textbook that it took three years to get an answer because my wife insisted to get a different blood test.

Since my strokes, I’m convinced that doctors are well intentioned yet "educated guessors."
My doctors missed the obvious signs of my upcoming strokes caused by my Fibromuscular dysplasia.

The good news is we caught this early. The only cure is a strict gluten-free diet.

The bad news is practical ramifications of this diagnosis are sobering.

How do you tell your 13-year-old son that he can’t have Pizza or run to McDonald’s with his buddies? What can he eat at a birthday party? What about family get-togethers like Thanksgiving and Christmas?

Will friends and family understand or get too impatient with this new life changing event?

We have been reading a lot about food preparation and restaurants since this diagnosis.

Here is a short excerpt that is very helpful: "Home, Safe Home -- Help Clients With Celiac Disease Avoid Gluten Contamination in the Kitchen" by Lindsey Getz

"Although celiac disease is manageable and treatable, a diagnosis can overwhelm patients. After all, the condition necessitates significant lifestyle changes.

"Simply buying gluten-free products is not enough; patients with celiac disease must practice safe food handling, preparation, and storage in their homes. While maintaining a safe kitchen involves a lot of responsibility, dietitians can arm their patients with helpful tips to make the task seem less daunting."

"Flawless Food Preparation and Handling: The gluten-free market has come a long way. Today there are more products available than ever before, and people with celiac disease are realizing they can enjoy many of their favorite foods again."

"But keeping food truly safe means avoiding cross-contamination with gluten-containing products, something that’s not always easy to do in a busy home kitchen."

In addition, there’s a huge cost involved. Three years of expensive doctor visits with no answers. Finally getting an answer through very expensive procedure in the hospital. There will be the follow up and expensive visits with specialists. Finally, cost of gluten free foods are exorbitant.

And honestly, as my son said, "Dad! Most of this food taste like shit."


My son had to go up too just because of my strokes. And now he has to deal with this issue. When he starts to date he will have to explain to his date that he has a disease. "I’m sorry I cannot eat that! It is basically poison to me." How many scenarios will have to endure throughout his whole life?

Today he just want to go to McDonald’s. He said he doesn’t care if he dies.

I know this is new. Emotions are raw and real. I know he’s 13 years old. I know people will just say "he’ll get over it."

And he will.

Where is the textbook for me to help my son?

Friday, August 31, 2018

Newspapers and fluff

My mother-in-law, Phyllis Saxton, grew up in Caldwell. She and her husband, Harvey, owned Saxton Fruit Farm on the south side of Lake Lowell.

She is spending a couple of days with us recovering from shoulder surgery. She loves her newspapers. She reads the Idaho Statesman and the Idaho Press Tribune.



This morning, I cut up the newspapers so she could read with one hand because of the shoulder surgery.

In my opinion, Idaho Statesman shadow of its former self. They still have great reporters, but there it’s not really a lot of news anymore.

On the other hand, the Idaho Press Tribune based in Nampa is expanding their news coverage throughout the Treasure Valley. They hired the best political reporter in Idaho, Betsy Russell. They have a robust presence in every way.

After cutting out the fluff, classifieds, and ads, this photo shows why the Idaho Press Tribune has more in depth news coverage then the Statesman. Pretty sad.

Even when my mother-in-law goes back to her own house, I’m pretty sure I will read the Idaho Press Tribune.

Things have really changed.

Sunday, August 19, 2018

Mailbox and Aphasia

Recently I completed a very simple project. Our old mailbox post is comprised of one 40 year old 4 x 4 post and the horizontal supports made by two 2 x 4’s.

Through the years, all the boards have splintered. I have tried to fix the boards for years with nails, screws, etc.

Our neighbor’s mailbox basically fell off several months ago and I tried to fix it with new screws. 

Last week when my wife was out of town, I decided to completely fix the whole thing. I did this when she was out of town because she’s very nervous when I use any tools at all. 

Because of my strokes, vision loss and my aphasia, it is a little difficult for me to do simple handyman jobs that used to be second nature to me. I sold my tablesaw but kept my miter box.

I did complete the job. No blood was shed.

But quite honestly, in the old days it would’ve taken me maybe 30 minutes to do this whole job.

This job took at least 10 hours including brakes because sometimes I get overheated and dizzy which is common with strokes and fibromuscular dysplasia.

It was actually fun for me to figure out how to complete the project. I had a small level, hammer, cordless drill, drill bits, different screws, small angle brackets, black spray paint, etc. Using some of those simple tools were exhausting for me because of the complex brain activity I had to expend.

The most difficult part of the job was measuring the new boards. Using a tape measure is incredibly difficult for me because it’s difficult for me to understand numbers.

I cut two new 2 x 6 brackets. But I wanted the brackets to be centered to the post. The 2 x 6’s were cut 16 inches a piece. It was difficult for me to understand that half was 8 inches.

Double checked it several times.

I also asked my son to double check it as well. My son helped me level the new brackets. Also helped me spray paint the wood.

It was a great father son day and was very rewarding for me just to do something constructive.

But I simply miss the logical process of doing a handyman project. When used to help build houses and you made a living installing carpet with sophisticated measurements, it is still disheartening when I cannot understand how to measure a 16 inch board.

So odd.