Update

TheDemon in the Phone

Back around 2006 or 2007 (before I could talk), I started using a phone.  We had caller ID, so I only answered when my husband or kids called, cuz they knew “the system”: 1 beep on any button meant “hi, this is mom.”  Then the “fun” began (I’m being sarcastic, if u can’t tell)—whoever called played 20 questions with me (usually, the 1st question was to see if someone was there who could read my ASL,  & I would answer them with 1 beep for yes, 2 beeps for no).

Then, I got a cell phone in 2016.  This seemed silly, since I couldn’t use a phone yet, really…the phone was more to hold on to my son’s phone #, during his mission (which I “stole” because I’d been texting from it those 2 years, so my son was nice & let me keep my texting #.)

Last year (2018) my son called me & asked me to return his call…& when I went to return his call, I had like a 15 minute panic attack before calling him back—“what if he didn’t understand me & I was all alone, & there was no one to translate me?”  It had been 15 years since I held a conversation on a phone….I was kinda’ out of practice…”what do I say/ask to keep a conversation going?”  “Was this a good time for him?”

I told my music therapist about this experience, & she encouraged me to start having more phone conversations with more open-ended questions, & to also have people call me.  I started small with just immediate family & 1 friend, until I got the nerve to post about it (but to those kind friends who responded  & said to call, I STILL haven’t had the nerve to call them!)  However, my sister & I set up a weekly time to talk.  I still can be hesitant to call her  if I don’t think my speech is good that day, but now it’s not my “usual” anxiety as much as it is just knowing how much energy I  need to  have to speak,& if  talking is hard that day, it takes lots of energy to speak!

Monday, my missionary (daughter) called me—& for the 1st time ever, I wasn’t even phased when I heard my phone ring, I just answered it, not even caring that I was alone!  She seemed to understand me just fine, & I enjoyed our talk! I felt  like Supergirl when we were done because I had conquered a demon!  I am sure it has helped to talk to my sister (thanks Missy!), because I’m ok if my family calls now…someday I’ll get to where I feel comfortable answering any call(instead of getting nervous & hanging up on telemarketers! Ha! Ha!)

Time for an update…

I haven’t posted in a while, though I meant to last June (found this post):

Today (6/18),I  was using my grabber to pick up trash that didn’t quite make the trash can, & when the trash can lid opened, the trash was flung to the other side, & onto the floor. Instead of sighing, or giving up, I laughed about it.  My niece (who has been staying with us) saw the whole thing & commented about how “u know it’s a good day when u can laugh at stuff like that!”  & ya’ know what?  She’s right!  There are days I can’t even gather the strength to go get my grabber, let alone take 3 tries to throw away TRASH, & remain in a good mood!

Anyway, been a busy summer: my son got engaged (I get another daughter, Maddie,  on Oct. 19th!, & we all love her so much—she just “fits”), we finished building a home in Utah with my in-laws (WE ARE NOT MOVING!  My in-laws & my son live there for now, until Maddie joins the family & they will live in a “basement apartment”…but upstairs, there is a room for me in the house, so we can visit longer), & took (what my niece called) a vacation in a vacation: flew to London (I swear it is the most accessible place in the world!), then flew to Spain, where we boarded a cruise ship for a Mediterranean cruise, visiting another port in Spain, France, & Italy.  Then we flew to Denmark.  After visiting all those awesome places, is it wrong that the highlight of my trip was seeing people (who weren’t disabled, & probably just wanted to be alone to poop!) thrown out of the disability restrooms?!? I love Europe!

In our church, the members take turns speaking, & last Sunday I gave a talk in church: https://app.box.com/s/tu1mw6ktoulqwbnhhnk3v4nf9e0k01oy

I intended to introduce myself & my daughter vocally—I could do it at home, & I got up to the pulpit & raised my chair to standing, but I was too anxious, & ended up signing the intro & my testimony—though I did end it vocally…(thanks to the fact that I pray with my family vocally, & talks are ended the same way as prayers,  so apparently repetition helps me, too, not just when u teach kids!)

I started horse therapy again this week!  I am so happy!  Horse therapy heals me emotionally & physically, which is awesome!  Attending horse therapy is 1 of the bright spots in my week (the others are seeing/hearing from my missionary, Jessie, on Mondays, & attending church Sundays)  One of the things I miss the most is that pain u feel that tells u that u are getting stronger.  But that is why I love horse therapy so much—cuz sometimes I can feel it working!  (& Growing can hurt, so u might as well enjoy it!)  This (I think) is my 6th year. I used to be wiped out all day after a session…but my endurance is getting better, so while I could feel my muscles “waking up” (so awesome!), I wasn’t wiped out this year.  Yea, me!

Five Loaves and Two Fishes
I faintly recall hearing this talk years ago (Five Loaves and Two Fishes by James E. Faust), & enjoyed hearing it again!   (https://www.lds.org/study/general-conference/1994/04/five-loaves-and-two-fishes?l=)
At the risk of sounding prideful, after listening to this talk, I felt like this talk (in a way) described me currently.  Let me explain: I know I was very troubled after my stroke, feeling like I had previously been blessed with all these talents that were “taken away” by my stroke…& I wondered, “had I not used them properly, so they had to be taken away?”
However, despite these troubling thoughts, I also came to know that this was a trial that I needed in order to fulfill the mission that I was sent here to do, & as time has gone by, I have seen how those talents (that were there pre-stroke), have oddly been helpful in many ways now (by building certain muscles, increased knowledge in ways that would later benefit me, & by building brain pathways that would allow me to regain certain abilities  later).  These previous talents were not “lost”.  They have aided me in becoming who I am today.   I do not feel like any years (or money, dad!) were “wasted” by being a singer, dancer, actress, teacher, mother, reader, horse lover, or even a milk drinker (Ha! Ha!)  I have seen how every one of those things has helped me in my stroke recovery today.  & even though I don’t have much to give now, I continue to have opportunities & people placed in my life so that the Lord has been able to make a lot more out of my life than I could ever do alone.

It’s been 15 years!

15 years ago on the 16th of March, I had a stroke. Over the last few months, I have been thinking about how many people (immediate & extended family, & friends) as well as other things that I have gained back & I have started to take for granted: For ex., I have an incredibly supportive husband who has stayed by my side through physical & mental health issues, & helped to raise 3incredible children…& despite all the hardships, he is still here!  & I can recall how thrilled I was when I got a Kleenex out of its package on my own the 1st time.  Or how excited I was when I put a CD into the CD drive of my computer. Recently my oldest daughter had knee surgery & was thrilled when she was able to finally moved her leg, & I was reminded of all of my 1st movements & how thrilling it was to regain each one!

A while ago, I got this text from my daughter (who is recovering from knee surgery): “Both my friend and I are on crutches and we got front row seats to the game even when we were late”. I am sure that was very frustrating to all the “normal” people. But with all the daily hardships of disabled life, it is nice for us to find a few pleasures in life.  Those few perks can really help on a bad day.

So, in honor of all that has occurred in the last 15 years, I’d like to return the favor. I have been blessed in countless ways since then, & 5 years ago, I found Red Arena, where I do horse therapy.  When I began, I was like a rag doll who couldn’t talk.  Doing equine (horse) therapy at Red Arena has been an incredible blessing in my life by strengthening my core, giving me increased independence, helping me regain a lot of my speech, & even reducing some anxiety. Red Arena is currently trying to gather the funds to build a covered arena (which would be awesome, cuz then I could go on rainy days).  In honor of my 15th stroke-aversary, I’d like to help them out by gathering donations.  If u’d like to help, go to  http://www.redarena.org/  … Once u click any yellow donate button u get a menu and one is of “donate in honor of someone” and u can put my name there.

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!)