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.

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.

i FORGOT TO POST THESE…

When I went to write my last posts, I realized I had these written as well, but I never posted them:

 

Here’s a post I started to write after my Christmas phone call with Zach:

Next time I talk to Zach (on Mother’s Day), he’ll be home like 3 weeks later!  These 2 years have gone so fast!  I remember how, when I was a teenager & my oldest brother served the 1st mission I had ever experienced, it seemed to take FOREVER!  It was so hard! But this is not “my first rodeo”, & my brother’s mission was before Skype… at least now u can see them on Skype when they call!

 

Here’s a post I started to write when Giuli left & I bawled like a baby:

Giuli left today, & I bawled like a baby I am terrible at goodbyes!  I get weepy anyway, but if my PBA kicks in, I sob!  I hate it!  & If I want to speak, I can’t, because my breathing becomes so erratic!

 

The thing I hate most about PBA is how I give mixed signals. I may laugh at a dirty joke, for example. Not because I think it is funny, but either I “sense” how the person telling the joke feels, I hear laughter, or the emotional response of disgust comes out as laughter instead of tears.

 

Here’s a post I started to write after I read the New York Times obituary for President Monson:

This part of the New York Times obituary for President Monson ticked me off: “…the church declared same-sex couples to be apostates and restricted their children from baptisms and other rites.”  That is not true at all!  If u are a kid of gay parents who are living in a way that conflicts with the church’s teaching about eternal families, how can u be baptized, & live peacefully with your parents???  You can’t!  The church was being sensitive to what could have been an issue!  & it is not like we are against same-sex attraction, but because God has taught us about eternal families, we are encouraged to live in accordance with our beliefs, & unfortunately, a same-sex couple cannot procreateJ, so it is not a lifestyle we promote!  But this has absolutely NOTHING to do with ANY prophet!  Prophets speak for GOD!

 

That’s all folks!   We are all caught up!

14 years ago…

After so many years, I had to start “doing the math” before each birthday, & now I can never remember how old I am!  I just have lost count…well, I have reached that stage w/my “post-stroke” years: after subtracting this year from my stroke year, I knew this was my 14th stroke-aversary!  Ha!

A good friend recently told me about the movie “Breathe” (a movie based on the true story of Robin Cavendish who, at 28 yrs. old — I was 30—was paralyzed by polio and given just months to live — I was given 24 hours to live. Against all advice, Robin’s wife Diana brings him home from hospital(like Mark did), & he becomes a British advocate for the severely disabled—which may explain why England is SUPER accessible!)

Parts of that movie hit so close to home that if I had seen that movie years ago, it would have been a struggle to watch, but since my stroke occurred so long ago, I was able to watch it & just relate to many of the situations & conversations (only my side of the conversation was either in my head, blink spelled, or signed!) I echo his words: ‘I don’t want to just survive. I want to truly live.’  Thank u to all who make that possible…this day is for u, too!

progress after 13 years???

At 1st, I  wasn’t sure what brought this on, but I think I can now attribute it to a few things, & 1 thing is the many prayers that resulted from a recent post of my Mormon Messages video!   Horse therapy, chair yoga,  & my bike (that also do arm circles) have strengthened it, & not “ignored” it…

Here’s a post about more progress, that I started to write when our foreign exchange student, Giuli, was nearing the end of her stay, & her family came to visit:

I have always felt like my anxiety has somehow blocked my speech, & in the last month, I have been doing activities to calm my anxiety (chair yoga & guided meditation).  I don’t know for sure if this is related, or merely a coincidence, but my speech has improved DRAMATICALLY in the last month.

Giuli’s family is here, & they are really nice!  I love that even I can talk to them (sometimes I need to act out what I say, but used to be that if no one was there who knew me, I sat in awkward silence with “new people, until they returned — but not now!) J  This “taking thing” is getting exciting!  I am no longer afraid to open my front door, to talk to strangers, I am more open to the idea of attending social functions, & I am able to participate more in small group activities, like brainstorming.

& to further that progress, here’s a post I started to write after I taught a scrapbook class in my home (Jan. 18, 2018):

I taught a scrapbook class here Thursday, & it was amazing!  When I teach, I usually have someone teach with me & translate my ASL.  I thought my Sister-in-law would do that, but she was sick, so her friend, Julie–who does not sign–was asked to help me.  While Julie can’t sign, when she helped me months ago, she did REALLY well understanding my speech (& my speech has definitely improved since then), so I did not ask my husband or one of the girls to help me.   I figured that this class was a good place to try teaching “alone”, since Julie understood me so well, since it was a smaller group, since I had no tight time constraints, & since I’d teach moms, & it seems like moms can usually understand me (I assume because of experience that comes from talking to toddlers!  Ha!Ha!)  

Still, I was a bit nervous.   Seeing my other sister-in-law there gave me a “pacifier” for my anxiety (since she knows my ASL & speech), but once my brain started working, I relaxed  & I could speak, & I remembered that if anyone can’t figure out something I say, I can just open a word document & type my response.  So, as I taught, while Julie sometimes clarified my speech, she sat with everyone else (& sometimes no clarification was needed)!  So, for the 1st time in 14 years, I taught “alone”  (I spoke, I played videos, I demonstrated stuff, & occasionally I typed on my large screen TV when I could tell they didn’t understand me!)

When I emailed Julie the next day, Julie said:  “I was actually surprised at how easy it was to understand you. It reminds me a bit like speaking and understanding a foreign language…it takes a minute for the brain and ears to adjust, but with a little extra focus, the communication begins to flow with more ease”