Recovery

Slowing down

Before coronavirus, I actually had a good routine set up…I bet u felt like u did, too. Oddly, while the world has slowed for everyone else, & made their lives less busy, my world has started spinning, as I can get more help now, & w/that help, I have the option to do so much more. Crazy, huh?!? (Interestingly, my world has only changed in ways where I try to become more like “everyone else”: music & yoga therapy are online, & horse therapy temporarily stopped—speaking of…I am REALLY concerned about them, so if like to help them out by gathering donations. If u’d like to help, go to http://www.redarena.org/ … Once here, go to “donate options” under “support” on their toolbar.)

I thought I wanted a busier life, but after a brief reminder, I realized that I don’t want that! I don’t feel as happy—even when I’m getting done what I want done—if I have to fight for my time alone to have time for my personal scripture study & meditate. Seriously…I’m happier on the days I fit those in! In trying to find a new balance, it occurred to me: I’VE DONE THIS BEFORE…meaning, I’ve had my life turned upside-down on me, very suddenly, before & gone from being a crazy, busy mom to being well…uh…me! Someone far less busy. Someone who looks back & can see how beneficial it can be to be less busy.

I’ve had a few weeks to “busy myself up” again, so let me share how I’m trying to figure out my new schedule, & maybe something will stick out for u as u figure things out for u.

1st, try to avoid any depression & be grateful for what is still a “can do.” Then, I use the spirit to help me figure out my “good, better, best” activities: ie, I’ve always wanted to do therapy daily, but w/the business of other people’s lives, that wasn’t a possibility before. But now it is! So now, part of me would like someone to come at least a few hours daily around lunch for help with lunch, potty, & therapy…but that seriously messes with my routine (meditation & personal scripture study, amongst other things…& now that my family can be there, I’m not!) So, I need to figure out if there is there something better or best I can do? Cuz while daily therapy is good, is it “best”? Tuesday’s used to always be my “date day” with my husband: going out to horse therapy, going out for lunch, & maybe going to the movies or to run errands with Mark—so maybe finding a way to still spend time w/Mark is better or best? & now that my family is around more, shouldn’t I find a way to interact w/them more?

Months ago my daughter (who was on her mission & has since been sent home) was facing a tough decision. I told her, “U’re faith is being tested by not knowing. God is forcing your faith to grow & making u take a “step into the darkness.”

& when she was physically hurting & felt like she was slowing down others, I told her, “I totally feel for U about your frustration with slowing down the work…I get it. But God probably appreciates u for doing your best….even if your best is just rolling out of bed one day. Reframe. Accept what u are capable of doing. God does.
Would U tell a friend what u are telling yourself? Be nice to yourself.”

Ever notice how much easier it is to dish out (rather than to take) advice? Maybe I need to take my own advice & be nicer to myself, acknowledge that I’m doing the best I know how, & grow, by taking a “step forward into the darkness.” I encourage u to do that, too!

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!)