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!

I love Halloween!

It has been forever since I have written… I seem to go from one thing to another, without ever coming up for air.  But this year, I had 2 Halloween costumes that were created by 2 very creative people: 1st I went to a Halloween party with my helper & friend, Angie, who did Dr. Finkelstein in one style, using make-up—Angie went as Sally, Dr. Finklestein’s helper from “Nightmare Before Christmas.”

Then, we had a trunk or treat at our church this weekend, but I wanted a more family-friendly costume for it, though…At 1st, I wanted to be a transformer. Then the Dr. Suess fish in a bowl.. But one day Mark joked about how when I talked, I sounded like E.T. & he had me say, “E.T. Phone home”. I DID sound like E.T.,  & the costume was born…so, Mark did ET in another style, using his own set of talents. He was Elliot, I was ET, & my niece was the moon.  I love how I can give  Mark or Angie a creative project, & say, “Here’s what I want to do…now make it look awesome!”  & they do!

                    

 

BTW, I still LOVE my standing chair!  Our world & our bodies are made for standing, & it comes in handy for the smallest things (like I stood up in order to pull down the medical coat for my Dr. Finkelstein costume)! I had a tilt table (a type of standing frame), & had looked at other standing frames before the standing chair, but the fact that I needed help getting into them turned me off – & now I’d add that the lack of mobility while standing would kill me, cuz I love being able to move while standing: getting into cabinets,& going down the hall (which freaks my kids out to see me “walking” down the hall!)

Several years ago we looked into a standing wheelchair, but we were in our old house, & it wouldn’t fit in my elevator.  I was super bummed, but it was a blessing in disguise: I was not strong enough then.  I was too weak to even stand up w/o assistance, & after sitting in this chair for extended periods of time, I can see how much less support it offers…it would have exhausted me!  , This chair requires much more torso strength, which I never developed until I started taking horse (equine) therapy (which I started  later–I was like a rag doll until then!)

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!

 

More Than Meets The Eye!

I feel so smart!  I had dropped my keyboard, but I wasn’t strong enough to pick it up with my grabber, so, after several attempts, I leaned my keyboard the long way against my tire.  If u saw my posts on Facebook or Instagram, u know that on April 16) I got a new wheelchair that can stand.  But in order to stand, I wear a chest strap that prevents me from leaning forward.  But my backrest moves, so I leaned that forward, & I was able to pick up my own keyboard!  🙂

About my new wheelchair: Like 7 years ago, I looked into a standing wheelchair, but my old home used an elevator, & it was a bit too big.  However, it was a blessing in disguise.  Not only has the technology advanced & made it safer & capable of doing more, but additionally, I was not ready for it!  My core was way too weak, & it would have made the chair uncomfortable—so a big thanks to horse therapy, again!

Now, 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, I turn into a “robot” that is much taller than my “human form”!  I will try to post a video!)

The last few weeks have been crazy trying to NOT sit!  (After 14 years of sitting, standing is a bit more appealing!)  In the last 14 years, I have created a world for myself where I sit, so at 1st, 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 I have spent more time doing other things.  Talking I can do sitting or standing, so I’ve done a lot of standing & having conversations—& it has actually become a challenge to sit & talk: (Maybe it is a coincidence, but I think my diaphragm is less “squished”, so I get more air…)

This means that 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, & 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?”) , so at first, I made a make-shift “tray” for my iPad, but it was hard to type, so I spent more time deleting. I now have a tray (which is AWESOME because now I can do anything I want to do while standing—like typing this post!), though it is requiring a few adjustments from my OCD-world.  The biggest adjustment is by my dear husband, who has a myriad of straps & equipment to remove from me every time I need to potty!  🙂

My kids are adjusting, too…At 1st, it freaked them out to come home & find me standing in the room, or to walk down a hallway only to find me rolling down the hallway as I stood!  But my favorite was that one morning, while I was standing, I went to see if my daughter was up & knocked on her bedroom door.  She opened it & gasped: she was NOT expecting to see her mom STANDING outside her door!  J
I am so grateful to God who has provided me with the means to be blessed this way.  This chair has provided physical & emotional benefits (hugs are SO much better now!), & increased independence (in my personal activities, & it has also allowed me to do more therapy on my own.