I had the most amazing Halloween costume! I thought I had this clever idea for a chef, but my husband had a much better idea & in a couple of hours, he created the stuff to make me a Hibachi chef–complete with the fire-exploding onion volcano!
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!)
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!
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 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!