Author: Jenny

In March 2004, I suffered a severe brainstem stroke, & was "locked in" for several months". I have been married to a wonderful man, Mark ever since Dec. 1994, & we have 3 kids: Zach (1997),, Jessica (2000), & Sophie (2002). I have been blessed in so many ways by God, so I wanted to keep a blog to share my recovery, life, & answer questions.

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.

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.

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!