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To speak or not to speak…that is the question…

I have had several vacations this year.  I always witness small miracles on vacation (usually by seeing Mark do things he shouldn’t be able to do’ & making the impossible possible), however, one trip we took allowed me to see the result of many small miracles in my own life:

In the summer (2018), we visited Indianapolis—where we were living when I had my stroke.  Back then (14 ½ years ago), I was told that I would never speak again, & even had a doctor tell me that I was a “waste of his time”, because “I would never talk.”  (So, I feel a bit of pride now when I have to be told to be quiet!  Ha! Ha!)  & when we went to Indy, it was so fun to be able to see how all those  small miracles in the last 14 years worked  together so I could talk to my friends again!  I talked for hours, & became so exhausted, I could barely talk by the end!  Talking is tiring!  

I credit the fact that I can speak to 2 things:

1.  music therapy — working on breath support, mouth formation, & other “skills”.

2.  horse/equine therapy — strengthened my core, allows great speech practice,  & has helped my anxiety

This Tuesday, I returned to horse therapy after a holiday break, & after a very difficult session that involved a lot of laughing, my ab muscles had “woken up”, & I had my best speech day ever: I keep a boogie board in my wheelcjair pocket, so I can write down things that are too hard to say, &/or not understood…but I was able to SAY everything to the guy who came over to help me with my computer.  Too cool!  A far cry from the previous, anxiety-filled day…

I have known that my speaking abilities totally coordinate with my mood, & recently it has become more apparent: while sometimes I can’t speak due to flem/the need to cough (it is so irritating that I amm still unable to cough on command!), needing to wake up or needing to “warm up” my voice (after being quiet for long stretches of time); quite often my inability to speak it is due to anxiety, or being sad, mad, upset, or hurt.  & since I can usually speak well, it is quite obvious if I am experiencing one of these emotions, as I get quiet, or start to sign more!  I literally get so up tight that I am either unable to expand my belly to take in air, or my breathing becomes erredic.

In order to combat some of these things, my music therapist has given me various exercises & (I hesitate to post this) wants me to face my anxiety & do more FaceTime calls–I have been doing them, & I have a ton of anxiety about not being understood, so I am reluctant to call, or answer a call, so when I am on a call,  she wants people to ask me more than yes/no questions (open-ended questions).  I also have tons of anxiety with many conversations cuz I have gotten out of practice on how to have a conversation.  Seriously.  I am used to being talked AT, not WITH!

Just checking in…

It has been a while. If u saw my posts on Facebook or Instagram, u know some of what is going on:

–my son, Zach, came home from his mission for The Church of Jesus Christ, serving the people in San Diego, CA in ASL (sign language).

–My daughter, Jessie also graduated from high school

–we had a party for my son & daughter to welcome Zach home, & congratulate Jess

–we went on an Alaskan cruise

–both my son & daughter went to BYU a few weeks ago, & on the way, they were rear-ended (they are ok, & were protected)

–my 18 yr. old daughter became the Relief Society president over the other college-age girls in her BYU ward (congregation)

–I got a new wheelchair that can use to either sit or to stand.   (I am like a transformer, & if I have my knee brace & chest strap on, I can “transform” from a sitting car, into a  robot…& when I do turn into a “robot”, I turn into a robot that is much taller than my “human form”!  (My “human form is 5 feet, 3,5 inches, while my “robot form” is like 6 feet tall—it’s pretty awesome!). 🙂

 

The week after I got my new chair was crazy trying to NOT sit!  (After 14 years of sitting, standing is a bit more appealing!)  However, in the last 14 years, I have created a world for myself where I sit, so I was very limited to what I could do standing...BUT if I’ve learned anything in 14 years, chances are high that I will need to make a sacrifice in order to gain something greater. So, despite limited things to do, I spent more time doing other things:  when I stand, I lose my belly (that I support my iPad on), & I lose my lap (which means I can’t use my iPad pillow, or carry/transport stuff, but talking I can do sitting or standing, so I  did a lot of standing & having conversations.—Oddly, it has actually become a challenge to sit & talk: Maybe a coincidence, but I think my diaphragm is less squished, so I get more air when I stand…However, I don’t think our dog, Cooper, likes my chair too much, also, since his lap is gone, & he’s always staring at me like he’s saying, “When’s it my turn?”  I now have a tray (I am standing as I type this!), but our dog HATES how he can rarely sit on me now!

 

i FORGOT TO POST THESE…

When I went to write my last posts, I realized I had these written as well, but I never posted them:

 

Here’s a post I started to write after my Christmas phone call with Zach:

Next time I talk to Zach (on Mother’s Day), he’ll be home like 3 weeks later!  These 2 years have gone so fast!  I remember how, when I was a teenager & my oldest brother served the 1st mission I had ever experienced, it seemed to take FOREVER!  It was so hard! But this is not “my first rodeo”, & my brother’s mission was before Skype… at least now u can see them on Skype when they call!

 

Here’s a post I started to write when Giuli left & I bawled like a baby:

Giuli left today, & I bawled like a baby I am terrible at goodbyes!  I get weepy anyway, but if my PBA kicks in, I sob!  I hate it!  & If I want to speak, I can’t, because my breathing becomes so erratic!

 

The thing I hate most about PBA is how I give mixed signals. I may laugh at a dirty joke, for example. Not because I think it is funny, but either I “sense” how the person telling the joke feels, I hear laughter, or the emotional response of disgust comes out as laughter instead of tears.

 

Here’s a post I started to write after I read the New York Times obituary for President Monson:

This part of the New York Times obituary for President Monson ticked me off: “…the church declared same-sex couples to be apostates and restricted their children from baptisms and other rites.”  That is not true at all!  If u are a kid of gay parents who are living in a way that conflicts with the church’s teaching about eternal families, how can u be baptized, & live peacefully with your parents???  You can’t!  The church was being sensitive to what could have been an issue!  & it is not like we are against same-sex attraction, but because God has taught us about eternal families, we are encouraged to live in accordance with our beliefs, & unfortunately, a same-sex couple cannot procreateJ, so it is not a lifestyle we promote!  But this has absolutely NOTHING to do with ANY prophet!  Prophets speak for GOD!

 

That’s all folks!   We are all caught up!

14 years ago…

After so many years, I had to start “doing the math” before each birthday, & now I can never remember how old I am!  I just have lost count…well, I have reached that stage w/my “post-stroke” years: after subtracting this year from my stroke year, I knew this was my 14th stroke-aversary!  Ha!

A good friend recently told me about the movie “Breathe” (a movie based on the true story of Robin Cavendish who, at 28 yrs. old — I was 30—was paralyzed by polio and given just months to live — I was given 24 hours to live. Against all advice, Robin’s wife Diana brings him home from hospital(like Mark did), & he becomes a British advocate for the severely disabled—which may explain why England is SUPER accessible!)

Parts of that movie hit so close to home that if I had seen that movie years ago, it would have been a struggle to watch, but since my stroke occurred so long ago, I was able to watch it & just relate to many of the situations & conversations (only my side of the conversation was either in my head, blink spelled, or signed!) I echo his words: ‘I don’t want to just survive. I want to truly live.’  Thank u to all who make that possible…this day is for u, too!