Sunday Stroke Survival: An Attitude Adjustment

 I was listening (streaming) my favorite HIS radio this week trying to get out of my funk. I was on the pity pot because in spite of the podiatrist shaving my callus down on my AFO clad foot, it was painful to take a step.  Well, I had pushed pass the pain to make kimchi last week. A big mistake, 

So now, I could make one trip to the front door and back (50 ft one way) before the pain sets in. The pain is in the ankle and last all day long allowing for trips to the bathroom and back to my seat (about thirty steps) without the pain becoming too excruciating. I am now sitting in the chair playing on the computer with my leg elevated above my heart on a bar stool most of the time. I had so much I wanted to do, but can't so frustration sets in. Thus enters the pity pot. It just hurts too bad to walk any farther.

I was playing a game in the computer when this song came on the radio. "Say I Won't" by Mercy Me. It struck my heart with such conviction I thought I would share it with y'all. I didn't know the story behind the song until I watched the video. All I can say is watch and listen.

It reminded me of how far I've come since my ischemic/hemorrhagic stroke that left me paralyzed on the right side in 2012. I was thankful. No, I haven't recovered the use of my arm nor leg, but even such, there is not much I can't do that I did before even with the loss. I just have to learn a new way to do it or adapting. 

Although I've heard this song many times, this time I saw me in the song. How many times have circumstances rose before me in the past. How many times in here and in real life I've said, "Watch me!" Suddenly, the funk cloud lifted. Sure, I can't walk now because of pain. But, will it stay this way forever, probably not. 

~~I'm gonna run
No, I'm gonna fly
I'm gonna know what it means to live
And not just be alive.

The world's gonna hear
'Cause I'm gonna shout
And I will be dancing when circumstances drown the music out
Say I won't ~~

Watch me! 

Eventually, I'll get a new PCP who'll write an order for my AFO to be fixed and I only have to wait until August for my new neurologist to shoot me full of Botox to somewhat tame the spasticity. Then, I'll be raring to go again. It just seems like forever. Say I won't... my faith will show you and I'll say 'watch me' go with a renewed attitude.  Patience, Jo, patience. ARGH!!!  Repeat to yourself over and over again.... 

"God is good, all the time. Remember, God's timing is impeccable. 

Never too early nor too late. It's just a matter of perspective."

Nothing is impossible.

Need a Kick in the Pants? Your Inspiration for Today

I have been reading blogs this morning. Not that I don't read all of the blogs, but some hit home more than others. Yeah, yeah, I have been horrible about not commenting lately, but I'm reading you. A couple of blogs stand out at me from the long list of bloggers I follow.

• One is Diane's The Pink House On The Corner. Her husband had a stroke in 2010. Two-thirds of his brain was affected. In spite of everyone suggesting to put him in a long-term facility, she brought him home. She is his primary caregiver. They had a life and still do, but changed forever. She was a published author and he was a graphic artist. Neither one are doing what they once were. Today, she blogs about an end to a dream. She has been told her husband will never walk again. Hard blow for them, but as I told her in the comments, never give up hope.

• The second blogger is Nathan Bransford. He interviewed a published author with Cerebral Palsy, Steven Salmon. Steven writes his books in Morse code. So far he's published three books.

• I'm a stroke survivor fighting my way back to become a better writer than I once was.  The hurdles are great, but I'm fighting one of the hardest battles I've ever faced and trying to do it with grace. My strokes are relatively young so there is definitely some mighty high hurdles to leap over to get where I want to be. You can find her here. Oh wait! You are already following and reading me.

So my question is...what hurdles are you having to leap over that you think are insurmountable? Yes, life will always put hurdles in front of you to leap over or trip you up. It's what you do with those hurdles that counts the most.

If you've tripped and fallen, do you sit on the ground nursing your boo-boo, or do you pick yourself up and finish the race?

Are you a quitter, a person that leaves things started but never finished? If so, why in the world would you want to become an author? It takes many hours, days, weeks, months, years of dedicated work to make it in publishing.

Are you a one hit wonder like the musical groups in the 60s? Whew, I wrote and published one book! Where do I go from here? Well, I put everything into this one published book and haven't got enough gumption to write another. Guess what! You're a one hit wonder. Write another one and put the same amount of effort into it. So many authors put everything into the first book which sells very well, and their second book is a stinker. Have the same intensity of effort into each book you write.

That's my two-cents for today but with inflation I think it's worth a quarter.

Sunday Stroke Survival ~ The Pity Pot

Yep, I've been really hopping up and down on the pity pot for the past month with all that has been happening at home and abroad, and it's okay. I allow myself the time so long as it doesn't consume my life totally. Although I have to admit I've got an angry, red ring on my derriere from my long stint on it this time. I said all of these statements on the balloons over and over again over the past month.

Quite a few months ago, I told myself I wouldn't get on it again, but I was only fooling myself. Hey, I'm honest. I usually limit my time on the pot to fifteen minutes but this time I couldn't. Somethings are beyond my control. I have to go with it and ride the wave until it's over. Accepting things I can not change, but this is a hard lesson to learn. I'm fast approaching, the 25th, the one year anniversary of my stroke. What a year it's been too. There was no cop out of "look how far you've come" that would console me.

The truth is while I have achieved great progress, this is not where I wanted to be by now in my recovery. I'm terrified that this is all the recovery I can achieve and will be like this FOREVER. I'm afraid of failure. The stakes are too high for me that this may be my life forever more. There I said it.

 I expected more out of myself. Remember I'm the over-everything. I do not settle unless forced to and let me tell you, that's always a fight to the death. Recently, I've been reading anniversary blogs of other long term stroke survivors- five, ten, fifteen or twenty years post stroke. It truly boggles my mind. The courage it takes to be a survivor not just a year but YEARS! To not lose hope along the way and not give up.

Many of the words to the left have been used by others to describe me. Yes, they are all true to the persona I show to the outside world. Many have written me about being an inspiration or being a hero in their eyes.

 I'm not any of those things. Okay maybe, a fighter, outspoken, and intelligent, but the rest is conjecture. I fight to recover daily because there is a possibility. I've seen glimpses of what life can be, wouldn't you do the same? I don't want to admit that this is all there is. Given fifteen years there might be an inkling of acceptance. I'm stubborn.

I speak out because it's not in my nature to keep quiet anymore, even when it is in my best interests to do so. Would it be better to stuff my feelings and not give them a voice? I did that for a lot of years and it made me feel worse not better. It explodes in other ways such as drugs and alcohol...been there- done that- and don't want to go there again!

I shouldn't be a role model or hero to anyone. Everyone has it in them to do the same thing. It is their choice not to. Any excuse in a storm, right? And boy, are most people full of excuses. I taught myself and my children to take ownership of their faults and try not to repeat them. It's left some of their bosses with that opening and closing mouth like a fish in the fish bowl look when they take ownership of their mistakes because they are so used to hearing excuses. I don't make excuses I just tell it like it is in my perception.

I choose to live my life as an open book. Well, maybe not totally open, but as open as can be. Because self preservation beats out total honesty every time. In this age of identity theft, I'd be a fool to divulge everything on the net. But still if asked a question, I'll answer to the best of my hair-brained ability from my point of view.

So if I don't keep to my regularly scheduled blog time table, you know why. Real life is just getting in the way. But I'll get there.

Nothing is impossible with determination

Friday Fun ~ Currently Reading

For a little over a month now, I've been reading the 218 page nonfiction, How to Conquer the World with One Hand...and a Attitude by Paul E. Berger. I just don't read fast with full understanding since my stroke, but at least I can read.

It's part of my self-education/inspiration reads. In other words, seeing how others have coped after a stroke. Like most stroke survivors we want encouragement and relate to someone who has walked in our shoes. Even though I'm regaining the use of my arm, it has been a very frustrating experience for me.

If I stop regaining use of my hand or wrist I want to be prepared with coping methods for that eventuality. Hello! <waving my hand in the air> I'm a prepper. Doh! No, I'm not borrowing troubles or stopping the therapy exercises to get them back. But we all need encouragement and hope.

The title alone would have made me buy this book after my stroke. Am I not a conquer? So I not have attitude? Yes, an over abundance of both. I'm Don Quixote tipping at windmills slaying dragons. I don't step away from anything just because it's hard or a challenge. Have I got attitude? Oh yeah, I do in a spades royal flush. My attitude works for and against me all the time. My "I do it" attitude has me pushing boundaries which is good and bad, but sometimes I surprise even myself.

No, I won't write an "official" review of this particular book other than say it has given me hope and reinforced my "can do" attitude so far. The author had far graver issues than I had with my stroke starting with surviving a hemorrhagic stroke.

Death is the absence of learning.

Saturday Saunter~ Inspiration and Games Progress Report

 Yes, I know it's Saturday. I purposely leave two days a week blank for whatever strikes my interest. Initially, it was planned for Thursday and Saturday no blog writing so I could have two days off during the week without a regular blog post. But that is subject to change...like today.

On the "Today" show this week there was an interview with a lovely, elderly couple. She had aphasia from a brain bleed. He was using flashcards at their normal daily jaunt to the coffee shop and helping her with her relearn the alphabet. Thank you, Rhonda Hand for sending me the link. Today Show click here to watch it.

A stranger thought it was inspirational of a man teaching his beloved. He took a picture and posted it online. It has gone viral with almost half a million hits. Although in the video the word "aphasia" is never said, people with this condition know it by that name.

Aphasia is a loss of words very basically. When your brain knows what it wants to say but forgets the word or even how to form or pronounce it. The person suffering with this condition gets frustrated with those around them when they can't speak, read or write. Just yesterday you could, but then you ended up with a damaged brain and can't.

For me, I have very mild aphasia now where my brain can't find appropriate words for what I'm trying to say. My manuscript is chock full of XXX (description of the word) to be filled in later. Or type a word and put it in colored brackets. Eventually, I'll remember the word or think of a better word and fill it in. Even this blog is written days before it is published so I can go back in it and edit. I'm working towards my goal...getting my words back. This is tougher than learning English for the first time because I know I know what the word is but can't think of it when I want it. It's petite death for a writer.

I had some experience with aphasia before I had my stroke. My youngest daughter was losing words and loved to talk. She would be chatting away when she would stop and mentally search for a word. Then she would say, "It's yellow. It grows on trees and monkeys eat it." You would tell her banana and she'd continue on with what she was saying. Her aphasia was due to too much iron build up in her brain. Her condition is hemochromotosis. The build up was so severe a few years ago the doctors gave me the-anytime-now speech. The speech every loved one dreads to hear. So I'm not a total stranger to the condition. So thank you, Jenn for showing this woman how to work around her condition before she knew she needed it.

On to fun and games. As you know, if you've been reading my blog, I've been playing games online to boost my cognitive/aphasia shortcomings. My DH (darling hubby) and have a subscription to Pogo that we renew every year. Originally, I thought of it a way to keep his brain active. When I came home from the hospital, the games I usually played were impossible. That's when I first knew I had some serious issues to address. There was no way I could keep up and play in the leagues I belonged to.

After I was home for a few days, I realized I'd lost all my foreign language abilities. Trying to pick up where I left off in writing my novels increased the magnitude of the deficit widened like a canyon before me. I couldn't write. The words blurred in front of my eyes making no sense whatsoever, but it was something I could work on. I laughingly dubbed it my "dyslexic/ADD."

I knew I had spelling problems, sequencing issues, memory matching, not to mention anything that involved strategy. I started simply. No time limit because I wasn't used to using my left hand with the mouse. I didn't care if I made mistakes and got an ugly sound. I didn't care whether I won or lost. I was being proactive and trying to fix something that was broken, but I set a loss rate of three attempts before frustration started to set in. That way I knew I had three times to get it right before I quit. When retraining the brain it is important to set limits.

I started with Tri-Peaks Pyramid because it was solitaire. I could retrain my brain with higher and lower values in sequencing. Across the top of the screen a man will travel across for each hand you win and open up treasure chests full on insane items and tokens. To the right is a snake which climbs the column depending on how many cards in a row you can match up. It gives you 1X, 2X, 3X the total score. But at this point the score is irrelevant.

I looked at the turn up card from the deck to decide which number is higher and lower in the sequence. You only have one undo per game so you have to really think. In the beginning, I would have to repeat to myself the number which was higher or lower than the card facing up. After months of playing this game I can now do this without constantly reminding myself.

Scrabble and Qwerty is a word game which does not allow for words to be spelled wrong. The timer is optional something to shoot for. I have now reached level fifty ( the highest) in both games and have moved on to timed games like Word Whackdown and Boggle Bash. I still don't have the speed I once did and play on the easy level versus the hard level I was on, but I'm relearning.To relearn effectively there must always be a challenge.

For color definition and strategy, I play Poppit. I have a rough time distinguishing green from blue. You have to match the colors in two or more balloons. I did something the other day that in my four years of playing the game I've never been able to do before. I popped every single balloon! That's real progress.

Currently I'm working on number recognition with Bingo and have progressed from one card and a slow caller to three cards to medium speed.

It takes repetitive action to build new pathways. Push towards recovery, but not to the point of frustration. Time and scores don't matter. You will be the winner.