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!

I had a brain injury, & am having a tough time coping with the outcomes. Can you offer any advice?

Since my husband wrote the 1st year on my blog, u mostly hear about the physical changes…occasionally he addresses the emotional, but u don’t really see even a portion of what it was like emotionally!

The 1st year devastated me!  I had many talents, with a bright, promising future & many hopes & dreams–& all were crushed in a few hours!  I could no longer do anything I used to do, & I was baffled at why this happened to me…I was a good girl, who had never smoked, drank, or done drugs. Why me?

The year that followed was the HARDEST year, & I don’t know if I would’ve done as well as I did it w/o my husband reminding me of my faith!  When I started to doubt what I believed, my husband pulled me through & helped me rebuild my Faith in God. That is what makes me strong. Christ will make our weaknesses strong. So, my 1st bit of advice: check out http://www.comeuntochrist.org. I am serious.  The Book of Mormon helped me enormously!  It might give u hope, strength, & new dreams too.  Can’t hurt to see if it does!

At times I felt very alone, but I soon learned that God has never left me, & actually is either “carrying me” (like the poem “Footprints in the Sand”), or is making me stronger so I can face things.  I know God loves me & I believe that I was prepared to deal with the things that I would face, so I could become the person INSIDE that God wants me to be…& I believe u were prepared for things too!  He loved us enough to give this life to us…It’s hard, but u can do it…or God wouldn’t have given u those things to deal with!

2. I’m a big journal writer, & as so happy when I could type entries again in my journal. One of my 1st entries was a list of all the reasons I wanted to die. My husband is a therapist, & I thought he’d show me some sympathy…so it came as no shock when he challenged me to list my blessings instead!  “Yeah, right,” I thought sarcastically…”What blessings???”

Several years went by.  It took a case of head lice to get me started: I was the only member of my family to not get lice, since I didn’t share chairs with my family!  When I started listing the blessings from my stroke, I listed things that seemed silly or things I had heard my husband say over the years.  Then came the “hard stuff”: take, for instance, my medical condition called PBA–how was it a blessing to not have control over my emotions? But somehow I found a reason, & whenever I get frustrated w/my PBA, I think of that reason, & I am able to deal with things better.

So, my 2nd bit of advice: Write down your list of blessings! Here’s how: Think of something you hate. Then find a reason it’s good. Not what you think a parent or God wants to hear, but what YOU really think.  You don’t have to give anyone your list–it’s private, & for you. If u choose to share it, you can, but it’s up to you when you do share it, & with whom you share it.  But do make the list, & actually write the list.

Don’t just think about it…Actually WRITE it down!  Thinking is a start, but writing it down firms it up in your mind. Just thinking it won’t do a thing! Trust me-I know! For years, I just thought about them, but a change occurred when I WROTE THEM DOWN!  One of the greatest ways I have, & continue, to deal with things is by writing down my list of blessings.  I’ve found writing helps me ponder, soften my heart, & open my mind & heart so I can hear the spirit.  It took me years to write my list, & I wish I’d done it sooner because it changed my perspective on what I faced.   Don’t put it off like I did.

3. My 3rd bit of advice: never ever think “I wish…” or “I can’t …” or ask, “Why me?” Don’t dwell on what u have lost, or what was taken away!  Instead, see what u CAN do, & what u are learning to do. Move forward.  It sucks that it happened…Now go make the best of it!

All your memories are all there, & it may hurt u to think about them.  It hurts if u think, “I used to…” So, find a new way to do what u loved…For example, I was a big dancer.  At 1st, I thought that part of my  life was over, as I can’t walk or use my left arm…but I have found ways I can “dance”, & I often attend a Father/Daughter Dance at my church, where I twirl, use my right arm, & lean my chair back in order to limbo!  Yes, if I think of how I “used to” dance, I would get very depressed, but instead I think of the present & future. 

Another example: I also was an All State singer.  It was VERY hard on me for years to hear how I now sound as I “sing”.  I am still shy, but have adjusted: I started out signing songs in “jenny-ese” (my own sign language) as I got used to my new sound, & practiced matching pitches.  My singing has improved over the years, but I definitely am not the singer I was before!  Still, I give myself a pat on the back!  & everytime u complete a small goal, & u should give yourself one, too!

Which therapy has been the most helpful to you?

I do several varieties of therapy (aqua therapy, yoga therapy, music therapy, equine/horse therapy).  All of the therapies provide something unique, & nothing is necessarily “better” or “more effective.”  Aqua therapy reduces gravity & allows me to walk if I am held right, in the water.  Yoga therapy helps me find “long lost muscles” that can be stretched, strengthened, & “retrained.” But since I have always loved horses & music, I do have my favorites:

Red Arena (horse therapy) uses the big muscle groups, & has provided the most drastic results in the shortest amount of time, & has enormously changed my day-to-day life!  After just a few months of riding, the strength in my core at least doubled what strength I had developed over 10 years of physical therapy at home!  Increased strength in my muscles has helped me to sit unassisted on many “normal” chairs, made it possible for me to participate more in family activities & travel, it has increased my independence in daily tasks around the home, & increased my enjoyment in life, in general.

The thing I have wanted to gain back the most is my speech.  Music therapy got me started, but horse therapy strengthened my diaphragm, & then music therapy is the one that does all the fine motor work & puts the muscles (that I develop in horse therapy) to work so I am able to relearn speech.  All my therapists hold conversations with me, which only strengthens my ability to speak, & helps my music therapist know what things I need to work on to help me be more clear.  All the therapies have provided something that has been essential in my progression, but horse therapy has provided additional, unexpected emotional benefits, as well.

I can’t say that everyone will have the same benefits as I do with music therapy (since I know “musical minds” are “wired” different-so those w/o a musical background may respond better to occupational therapy), but equine/horse therapy seems a bit more universal.

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.