Recovery

Stroke-aversary/Typical day

This year on the 16th day in March, it will be 16 years since my stroke, & I will also be one year older than my mom was when she had my baby brother, Mike (there are 7 years between my 2 youngest brothers–can u even imagine thinking for 7 years that u are done having babies, & then–surprise!  Time to start over!)  Not only am I  about the same age, but instead of a baby,  my son got married, & soon  I will be an empty nester: 3/5/2020  was a big day for our family, as it was Sophie’s 18th birthday (I can’t believe  I have no more KIDS, only ADULTS!) & it was also my daughter, Hermana Jessie Lynn’s hump day (in other words, her mission is halfway done)! I KNOW the Lord is watching over her & protecting her!

So, what have I been doing all these years?  If u are just looking at me, I don’t come across as someone who can do much, but if u get to know me, u might be surprised by all that I can do (& the advancements in technology the last few years have only increased my independence).

Years ago, Jack Rushton (who was paralyzed from the waist down) said it best when he said (emphasis added), “Lying in bed I truly feel handicapped, but in my chair, sitting upright, just think of what I can do.  I can work on the computer, read and write, or go outside and sit in the sun or roll around, and if I’m real lucky, get hauled into the van (or go on a plane/cruise ship)  and go off with Jo Anne (Mark)  for a never ending adventure.  I truly am a lucky — or as I prefer to call it—a blessed man.”  (woman!”)

So I thought I should address my typical day—from my husband’s eyes:  I have taught early morning seminary for the past several years and we usually get up at 5am.  I help jenny use the toilet and then I shower both of us.  I dress her and quickly do her hair.  She has been attending seminary with me so I load her up in the van and drive her to the church where I commence to unstrap her (and the chair) and help her out of the van.  After seminary, I load her back up and unload a few minutes later once we get home.  I make her breakfast and give her some liquid meds, but she is able to get her pill meds from the prepared med box by herself and take them with food or water.  Jenny can get water from the refrigerator, as well as some prepared food from a refrigerator drawer. She needs assistance with a paper towel bib to protect her clothing while she eats, but she does all of her own feeding.  Self-feeding is not always pretty by the time she is finished, but Jenny literally buys Shout Wipes by the case.  Jenny drops her dishes in the sink and throws her garbage in the trash can.  We have tried to hold family scripture/prayer sometime during the day.  I will shortly thereafter help her use the toilet again and she is able to access her computer and other supplies in her craft room with little or no help for most basic things.  Jenny has a few exercises that’s he does with and without help from others- mostly with help.  Her new wheelchair is a “stander” so she can get standing exercise and reach higher things on shelves without help. Jenny has discovered grocery deliver service, Amazon, and other related tools to be a huge blessing for her independence.  Our current home has smart home technology where she can play music, turn on/off lights, adjust the thermostat, and open and close dose remotely from her iPad.  Jenny usually does not need assistance until lunch (which she can get on her own if need) and then to use the toilet shortly thereafter.  Things kind of repeat until dinner (which is the similar routine as with lunch).  Jenny requires me to dress her and help her use the toilet one last time before bed.  I carry her to bed and get her situated with a rolling stand that has her iPad and ear buds.  Jenny needs significantly less sleep than me (or average humans) so she will often go to sleep after me and get up well before 5am and either lays there or keeps herself busy on her iPad.  I no longer have to move her several times each night.  It is less than once a week where she needs me to roll her on her side or reposition her in some way.  I own this to the magic of memory foam and her ability to make slight movements on her own.  I still reposition her when sleeping in hotel beds, but still not as often.  Depending on the day, I may go to work and one of Jenny’s two helpers will come and help with the lunch and bathroom routine and other tasks Jenny is working on.   She is always working on something.  I am a little upset at the doctors because they promised me she will be sleeping all day in bed.  Jenny is ALWAYS working on something.  She makes me tired by her constant activity.

tender mercies

A while ago, I began a journal to record the tender mercies I saw from God each day in my life. I have been very sporadic, but whenever I do it, I am overwhelmed by what He has (& continues to do) for me.   Here are some of the more recent “tender mercies”:

-there have been several days where I either needed time alone to process/understand my feelings, or to “catch up”, & one of my helpers was either delayed, or couldn’t come into work. I hate to say her trial is a blessing for me, but I know the Lord has a way of turning lemons into lemonade.

–people saying things that I need to hear precisely when I need I need it

–people doing things at a time that works so they can give me the help I need, exactly when I need it…though sometimes it has presented as a test or trial–& if I “pass,” I receive help emotionally, too…not just physically

–people are constantly being put in my life to help me in more ways than one.  Here’s an example:

No cause was found for my stroke, but one theory is that my diet was a factor: pre-stroke, I rarely ate fruit (unless it had nutella), I hated most veggies (except corn), pasta was a staple in my diet (& it was often chicken Alfredo) & I rarely ate greens, so my blood was thick.  (I tried eating healthier when I found out I was pregnant w/Zach, but that was a very bad idea to try to change my diet when I was pregnant!)  Anyway, I hit my head a few days prior to my stroke, & the theory is that my blood was too thick to get through a skinny nerve I had at the base of my skull.
I was over-joyed (note the sarcasm) to learn post-stroke to be told to eat LOTS of leafy green vegetables. “Just my luck!,” I thought, & for years, I just ate what I wanted.   (“I already had a stroke…what could make me worse?”)
But then I gained a lot of weight, & since Mark transferred me, I felt responsible when Mark kept hurting his back. So I replaced my stash of chocolates & Cheetos w/freeze-dried fruit, & gave myself other restrictions…& with some small, though difficult, changes, I lost tons of weight.  As a bonus, I learned to like eating healthy, & then I got a new helper, who is the bomb at making healthy food super yummy, which was a tender mercy to be sure!

Over the years, this helper has helped me in countless ways w/physical, emotional, & social ways as well…& she is not the only person who has entered my life, & helped me in multiple ways.  Many friends AND family have equally blessed my life!

–sometimes other people in my life will be the answer to a prayer or be given challenges where we can relate & strengthen each other

–daily events that have helped “mold” me so I am better equipped to face current challenges in my life

–During the past year, I have enjoyed being able to bite into whole pieces of fruit.  It’s been almost 16 years since I’ve done that, so it is exciting every time I do it!  I started w/a pear, & added other fruits: nectarine, plum, peach—even opening an orange & a banana.  By October 2019, I bit into a soft apple!  I can’t explain the joy that followed!

— The thing I have wanted to gain back the most is my speech. It has been a long journey (which is not over), but my speech has continued to improve —  & even more drastically during 2019!  Music therapy got me started (around 2006?), & when I began horse therapy (2014), it strengthened my diaphragm, & then music therapy could then focus on  all the fine motor work & put 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 could strengthen my ability to speak. By  September 2019, I felt confident enough to approach someone on my own, & talk to them—something I haven’t done  since my stroke, almost 16 years ago!  & after almost 16 years of only being able to text & email my husband when he travels, in October 2019, he Facetimed me not once, but THREE times  on a trip!

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!)

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.