Friday, July 6, 2018

What is a Brain Injury anyway?

What is a Brain Injury Anyway?? By Li Sa renraW
Adapted from "The Spoon Theory" by Christine Miserandino

My best friend and I had plans to catch up over lunch. But that morning I woke up with “it”, you know it well, horrible brain fog. I knew it was not safe for me to operate a vehicle that day so I called her to see if she would pick me up. She happily agreed. Upon arriving at my house she found me just standing there staring at my purse. “Need help?,” she asked. “Ummmm, no just a few minutes.” She knew enough to be quiet and let me figure it out. I surrendered and grabbed my checklist for leaving the house. One by one I methodically followed my list. I was toward the end when I said, “Cell phone,” that's what I was looking for.” The hunt began. We located my phone. I only tripped a few times as my overloaded brain caused my weak left side to slightly drag my toe as I walked. She watched me now out of breath, not from being out of shape but from my brain being overloaded,. I fumble with my keys to lock the door because my left hand was balled up in a fist that refused to open despite the brace I wore. She drove silently to the restaurant and we found our usual seat, the quiet one in the corner away from the windows. I sat smiling, taking deep breaths enjoying time out with a friend who at the very least respected my limits. I could tell she had something on her mind. She finally asked, “may I ask you something that won't be easy to answer?” “Of course, ask anything!,” was my response. “Well, I know the symptoms of your injury and how you like me to deal with things like when to just be quiet. But, what is it really like living with a brain injury. What does it feel like to struggle so much?” That's when I remembered an analogy I had just read called “The Spoon Theory” by Christine Miserandino. I was going to try it out for myself. I grabbed all the spoons around me and handed her the spoon bouquet. She didn't even flinch, I was always doing odd things! I explained that these were all the spoons she had for one day. Everything she did would cost her a spoon because with a brain injury you had to think about everything, every step all day. She jumped right into her day and I began removing spoons for the simplest things. She began questioning me. I explained that she lost her executive function and had to relearn all the sequences of everything like a child. You don't do anything automatically, it has to be carefully thought about. When she needed to go downstairs she lost a spoon. This one she fought for. I had to explain that she struggled with balance. Alternating her feet while she stepped was no small task. I didn't even bother explaining that all this thinking would lead to a left hand now so tightly wrapped around the railing used for stability she would need to stop and pry it off before continuing. I told her she could skip going downstairs but she would just loose a spoon fixating on whatever it was she wanted down there in the first place. “What about taking a nap?Can I get a spoon back if I get some rest??” “I wish, taking a nap will mean you can hold onto the spoons you do have left. Skip resting and you might as well throw those spoons away now!” By the end of our imaginary day she knew from breakfast that skipping dinner was not an option, pills needed to be taken or you might as well give up your spoons for the rest of the week. So, she opted for an easy bowl of cereal, it worked. I didn't mention that she was probably too tired an nauseous to cook anyway! She stopped and looked at me with a tear in her eye, “You really have to do this every day?” “I don't have a choice. Some days I have more spoons than others but I can never make it simply go away, trust me I have tried.” I handed her one more spoon I had been holding onto.(hold up spoon in pocket**) “ I have learned to always have a spoon in reserve. One of the hardest lessons for me has been learning to slow down and learn I simply can't do everything, or the way I used to do it. I just wanted her to understand that all the little things that everyone does so easily are like a hundred little jobs in one for me.” What other people simply just do, I have to plan it like I'm strategizing the winning touchdown in the Superbowl. I knew I needed to turn this around and find something positive for her to take home. “Think of all the time, all the spoons people waste every day. I can't do that. I don't have the luxury of wasted spoons so when I choose to use one, it is meaningful. Today, I chose to use one to be with you!” some parts copied and adapted from “The Spoon Theory by Christine Miserandino.

That is how I feel about volunteering. It is worth every single spoon I have chosen to use.

Thank you!

** Sweet story about the spoon I am holding up. Dear friends of mine asked me to be in their wedding. It was something I wouldn't miss being a part of for the world. But, to be full present I was going to have to limit the events I went to leading up to the ceremony. They graciously told me to do what I had to but I thought they need a better explanation than the one I gave them about cognitive fatigue and how even though it look and can fake being fine for short amounts if time there is always so much more going on than meets the eye. I sent them a copy of “The Spoon Theory” by Christine Miserandino. As a gift for being a part of their day I got an engraved spoon that said “Thank you for being our friend.” They understood the cost and gave me a spoon for my reserve as a memento.

Saturday, January 27, 2018

December tales

Every time I sign into Facebook it generically asks, "What's on your mind?" Usually I just ignore it figuring nobody really cares.  But in Early December I shared my thoughts on the Grinch, then wrote a blog post that I never published.  It went like this....

With the Christmas season approaching I have, in years past, been accused of being a bit of a Grinch about the whole thing.  I'm too tired to have any desire to decorate and decide where things go and disturb where my everyday things live.  Tasks like grocery shopping, that are already a struggle become infinitely more difficult.  People are stressed and busy and consumed with buying things.  And as the Grinch so honestly puts it, there is, "noise, noise, noise."But here is the thing I love about the Grinch, he has a change of heart.  He swallows his pride, returns what he intended to steal and changes his ways.  That's what I love about the introverted, misunderstood Grinch who has had too many of his boundaries crossed by others or perhaps in his immature youth failed to set healthy, honest boundaries with people. . Sure he may have overreacted a tad BUT.....he had a change of heart! 

So, this year I decided to have a change of heart; both for my sake and those around me. Hubby helped to simplify things by getting our families to agree we would only buy gifts for the kids.  He always helps with the decorating (because he knows it won't be done otherwise, it just costs too many spoons--> seriously check out this website!). I had survived to the last Christmas celebration and the one I'm most responsible for getting together.  My spoons were all used up and some borrowed from the next week.  It took all I had left to put on a smile and be merry! It takes a lot of brain cells to create a filter once it is lost (and never works perfectly, especially when you are tired and the noise just makes you feel like throwing up.) It ended in total disaster.  And there I stood feeling like a much less gracious Cindy Lou Who. 
For what was robbed wasn't material and couldn't be pushed back down a hill in a giant Grinch sled pulled by a dog with an antler tied to his head.  My precious little bit of energy was gone, vaporized. Oh how I longed to retreat up a hill and back to my unhealthy "Grinch cave" with wide clear boundaries. I wanted to set alarms lest anyone cross my boundaries again! Boundaries I failed to set so long ago.  But, Christmas came without it's usual cheer.   It came with heavy hearts and boundaries still unclear.  It came with the reminder of forgiveness both present and past. It came because Christ was born to live a perfect life and then die for my sins.  Christmas, my friends, came!

Saturday, September 23, 2017

#prayforGrace

Let's begin this post by asking for your prayers for the 15 year old daughter of friends who collapsed at school a week ago only to learn that she had a ruptured AVM.  Let me tell you how I know her family.  It was back in May when my neighbor and I were chatting about how the next day she would have a house full of girls getting ready for a big dance.  She was telling me that all the parents were going to come take pictures before the group left at her house.  We were discussing good backdrops for these pictures.  I offered/ begged her to use our beautiful rhododendron bushes (I also was excited to live vicariously through them.) When the group made their way to our yard and I excitedly bound out of my door to see all their dresses, etc. The couple closest to me introduced themselves and their youngest daughter. We ended up realizing we attend the same large church and promised to look for each other again.  The very next Sunday we did connect and since I was wearing my wrist brace on my curly left hand this time, we briefly spoke about my aneurysm; of course, then we had no idea how our lives would soon share a similar path.

This week has been full of lots of road blocks for Grace and her family, as is always the case in these situations. Grace is now awake, confused, scared, and asking questions, Praise the Lord.  If you know me you understand that this is going to be a long road for her as she moves forward and heals. Next week is her surgery to remove the rest of the AVM/AVF so it doesn't rupture again in the future.  It is a little different than my surgeries; please continue to lift her and her family in your prayers.  The surgery is on the 26th of September, which is Tuesday.

I haven't written in awhile because hubby has been working some crazy amount of hours this summer and has felt burned out which, of course, makes me burned out.  We decided some weeks ago to escape on a little overnight trip to VT right before peak leaf season.  The mountains were beautiful and it was nice to get away.  In light of all that is going on here I did not take for granted the fact that this time I was blessed to be the one to have life go on as "usual".  I remember being in the hospital thinking how "weird" it was that life was just going on for people out there.  They were going to work, getting groceries, letting their dogs out. They were not thinking about hourly neuro checks, MRIs, angiograms, vasospasms, blood pressure, etc., you get the point.  As we were away I still prayed without ceasing for Grace and her family.  We saw some interesting trees and this letter/post came to my mind.  It's not perfect, but here you go.....

Dear Grace,
  I know you woke up in an unfamiliar scary place.  You are in shock at what has happened to you, as are all those who love you.  Right now it all seems so very overwhelming and even at times hopeless.  If you are like me your mind has raced to the future wondering how your current situation fits into your hopes and dreams of what you wanted it to be.  While this event has taken us all by surprise, God is not surprised. He has known all along and has a plan far greater than your own.  This does not mean it is going to be easy, no my friend, it will take a whole lot of faith and yes, Grace! The trees we found on a recent trip to VT reminded me of the journey you are about to take.

Trees subjected to harsh conditions adapt by spreading their roots out deeper to ground them and keep them from blowing away in storms.
They don't grow as tall in stature as they put all their energy into sending out deeper roots.   As you cling to Christ, the solid rock on which you stand, you may not rise to be the tallest tree.  The struggles you face daily may keep you from soaring to the top in the world's view and may keep you in humble places with deep roots close to Him.
Other trees also overcame adversity in their own ways. Their trunks had become twisted as they fought to stand against fierce winds. But, they remained standing strong.
Twisted trunk but standing strong!

Comeback!! Between a rock and a hard place.
Some looked like they had given up, fallen down, but then made a comeback.  We even saw some thriving in very unusual places.
"Getting knocked down in life is a given.
Getting up and moving forward is a choice."- Zig Ziglar.
Not one person walked by them without stopping to admire their beauty, tenacity and resilience.  They held others up and gave them hope! Be the trees with strong roots holding to THE ROCK. The ones that overcame adversity with strength and dignity never giving up and becoming more beautiful because they chose to make the most of what they were given!

The trees around them seemed so ordinary and unremarkable, although each has its own story to tell, I'm sure!



“And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure, whether the storm is really over. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in. That’s what this storm’s all about.” ― Haruki Murakami


“Storms make trees take deeper roots.” -DP
Literally clinging to the rock!


Thursday, May 11, 2017

"The leftover"and other terrible tales

*CONFESSION* this post  has been sitting for months as a draft while I decided if I would post it or not! Here you go.............life was meant to be shared!
So, I don't know exactly why I've been feeling so blue and down for months now. But, I'm going to tell you two stories about a few of my worst moments growing up.  Maybe somebody needs to hear them. Now, if you don't know me personally you need to know that I am/was a very shy, sensitive person who tends to be very critical of herself, insecure and sufffers from terrible self-esteem. I have never felt like I was particularly great at anything, I still struggle!

Here is a story about me, in 9th grade, on an Earth Science field trip to dig for Trilobites, Google it they are real (some ancient creature that left fossils about an hour and a half from where I grew up.)  It was field trip day and right before everyone got on the bus our teacher told us to find a partner for the day. Everyone quickly paired off. Everyone but me! There I was, the only unwanted leftover.  As we loaded on the bus people found seats with their partners. I had to sit in the front seat with one of the teachers....gag! Not even a nerdy girl wants to do that.  It didn't occur to the teachers with us (both male) to have pity on "the leftover" and simply allow one group of three to save my dignity. Nope, their solution was one of them would work with me. So, there I rode in the front seat, on the inside with a teacher. It felt like the ride of uncomfortable shame! I was mortified! When we got there everyone got to pick their location while I was forced to remain on the edge of the digging site so the teacher "working" with me could still keep an eye on the group. While others are digging and laughing, there I am on the outside chiseling away by myself. And no, I did not find one of those ancient sea bug fossils. Then we returned and if it wasn't for my homeroom pal, S, or my 10th grade lab partner and friend, N, I would have left high school with many more self imposed scars!

Now this next story still makes me cringe. And to be honest, I don't want to tell you all the exact details but I will.

Also, in high school we used to show horses in 4-H horse shows. This particular day it rained all morning, like poured.  The show ring was muddy especially along the rail where class after class wore a nice ditch for water to collect. Now my horse (okay, mule, there I was riding a mule) did not like getting her hooves wet. And mules, being smart and thinking for themselves, don't do anything they don't want to like walk in water when they can't see what lies beneath it. So, I was the only one in this particular class (shocking since it was a mule class,right?  I have no idea why my sister wasn't in it with me though.) Anyway, there I am going sideways around the ring as my very skeptical mount flared her nostrils and kept a good eye on the ring of water I wanted her to step in!  All I could think about was how my horse, back at the trailer, would have stepped in mud for me! Having no mercy, the judge made me reverse and go the other way. It made no difference to a mule, sideways we went the other way; walk, jog, lope all sideways.  Finally, I lined up in the middle completely humiliated thinking I'd just hold my head high and walk out of there with my ribbon.  What I did not expect to hear in a class with only me was, "In second place riding Candy, is Lisa..........." Now I'm mortified.  I get my ribbon and get out of there as fast as possible.  I didn't make eye contact with anyone and just hiked back to our horse trailer to hide!!!  I mean this was 4H, not a high class show, show a little mercy people.

So, now you know why recently when a friend noticed I wasn't at an event and seats were filling up, she saved me one and I was so touched by her kindness I almost cried! Okay, but I was also tired and tears usually follow that too! This event I was going to was a Brain Injury related one. It was "downtown" and I knew one place to park and the lot was full. I was directed to another one, which thankfully I knew about from numerous trips to the hospital, the only other route I know!! To make a long story shorter, that lot was full and I was directed to another. I wrote down the name of the street. The attendant instructed me to just follow the car ahead of me (Ummmm, OK it was already out of site and who knows if they were going there or not!) So, there I was making turns here and there guessing the direction I wanted to head.  I found myself on an undesirable street. The stories I heard about this street during my pharmacy days were all very bad!  I was sure a car hijacking was immanent! Naturally, I found a newer store parking lot to turn around in and stayed just long enough to type the address into my GPS. I have a terrible time following GPS but I was desperate!!! I did make it to my destination without hitting anything and only slightly rattled! I parked and made my way to the event.  And there in the front row was a seat saved for me, it made my day so thank you, AMT, you have no idea what that means to me!!! ! Take that "left over girl with a second place ribbon," maybe you aren't as forgotten and invisible as you sometimes feel!

Friday, March 17, 2017

Happy Birthday

Happy Birthday to faithful reader and dear Aunt (you know who you are, I try not to mention names unless I ask first!) I thought this year was a big milestone year, even had it starred in my planner.  I was year behind :-( I had a card all ready to send, it is on it's way but will be late. I have been living in utter brain fog for the last few weeks!  So, Happiest of St. Patrick's Day Birthdays to you Dearest Aunt N <3 and="" lisa="" nate="" nbsp="" ove="" p="">

Friday, January 27, 2017

Another "new normal"

I really don't care for the phrase "new normal." I don't personally associate it with good things.  What I hear is "suck it up buttercup, this is how it is going to be now." Doctors and therapists love to use it when tears begin to fill my eyes (so you can imagine,I have heard it a lot.) I have a new understanding of the autistic student I taught. He would pinch you when you said certain "trigger phrases" like,      "say (insert any word here)." If I could get away with it I might pinch people when they said "this will be a new normal." Of course, in my head (usually) I'd think "not if I can help it." A few weeks ago, my beloved, super sassy, Lab mix, Mookie, "crossed the rainbow bridge." It was not unexpected but still a hard thing for me to deal with! My dad used to lovingly tease me that he wasn't sure where her quirks started and mine ended, or something like that. I think we fed off each other. But, for many years she was the easiest thing to relate to, mostly because she didn't talk or require me to! She was just there and she knew my routines, sometimes better than I did!! She checked on my every 10 minutes and never left until I gave her a scratch on the head. Unless I was sleeping, then she must have just checked if I was still breathing.  .  Although, I knew she could really do almost nothing to really help me it reduced the anxiety of being alone! Being without her is another post-aneurysm "new normal."

I looked for my Cardinal bird the day she left but got this sky instead!

When we first adopted my precious, Mookie (she had that name, we kept it because I figured she was already used to it) I thought it was because she needed us. I was wrong. I was going to need her, more than I could ever imagine at the time! Even before my aneurysm, which rocked her world too, she was my buddy, nursing me through migraines when hubby was at work. She quietly crawled into bed with me when I was shaking from pain. She just understood me and I her, we "got each other" in a very odd way ,that way only an animal can. She never would come when you called her. This caused me anxiety to no end. She would stay right with you until she saw something to chase and then realized her freedom and would take herself on an adventure blissfully unaware of the busy traffic she narrowly escaped.  I was always very careful about who I left her with when we went away.  There were very few people I trusted enough to leave her in their care. The list pretty much begins and ends with my parents, two hours away.  I would also trust my Mookie loving 8 year old niece and 6 year old nephew. They were always so concerned about Mookie being on her leash and always fed her from their hands so the anxious dog would eat something, if only they weren't 3 hours away! Once, I left her with family she already knew. They lived much closer and were right on the way to our destination.  I thought since it was only an overnight ], I would survive the separation anxiety I had.  Even though they knew, I left very specific instructions about always having her on a leash outside, especially in an area she wasn't familiar with.  Upon arriving to pick her up the next day, she was in the yard running around without a leash near an extremely busy road.  Thankfully, my prayers for the weekend visit were heard and answered that day and it all turned out okay. Well,  except for my disappointment that my instructions were ignored and her safety and my sanity disregarded.  Needless to say, trust was shattered that day and I drove the extra two hours each way or my dear parents met me half way so I could go away without having to worry about my poor, dear, anxious Mook Dog.

To this day hubs says he has never been more jealous and so happy at the same time as when I woke up after my aneurysm and the first thing I asked was if he fed Mookie.  Now, my hubs did things no man married for 2.5 years and in his 20s should have to do for his wife. Unfortunately, my memory of that time simply doesn't exist BUT I will never forget the moment when we had just brought Mookie home from the vet after seizures in 2015 and instead of sticking to the ridiculous notion that ,"she was a dog, and I was ridiculous." He picked her up and carried her down the stairs that night. I snapped a picture of the moment, I was so touched!
Her face is saying, "this is silly, I can totally do it myself."
My motivation for learning to walk again? Mookie loved walks, it was her very favorite thing. She needed me to walk again! After I came home she learned many new ways to tell me what she needed or found it on her own. You know, like there is always water in the toilet if you run out! So, at the equivalent of being almost 105 years old in human years here are a few lessons Mookie has left us with. And, thank you to everyone for loving me and for the cards and gifts.  I simply couldn't include them all and was too distraught to take a picture of everything!

Flowers from dear friemds that arrived not even 5 minutes after hubs left to go to the vet!

* Take a walk every day!
* Don`t live to please other people
* Always be ready for a little adventure
* Be loyal to those who truly love you and ignore your critics
* Be pleasantly persistent if you need something or find a way to help yourself
* Cherish every day you are given
Gift from dear friends that sums her up perfectly!
* Recover like a fighter
* PTSD is real!
* Be cautious who you call friends
* It's okay to take more than one nap in a day
* Clean up after the cook and you will always be fed
Plaque from neighbors that will go in a "Mookie memorial rock garden" in the spring!

Sunday, December 11, 2016

MercyMe - Dear Younger Me (Official Lyric Video)

I admit/confess it. I'm a thinker, analyzer, one who ponders.  I loved this song. I'm glad I'm not the only one who thinks about this from time to time...............


Dear younger me

Where do I start
If I could tell you everything that I have learned so far
Then you could be
One step ahead
Of all the painful memories still running through my head
I wonder how many different things would be
Dear younger me

Dear younger me
I cannot decide
Do I give some speech about how to get the most out of your life
Or do I go deep
And try to change
The choices that you'll make ‘cause they're choices that made me
Even though I love this crazy life
Sometimes I wish it was a smoother ride
Dear younger me

If I knew then what I know now
Condemnation would've had no power
My joy my pain would've never been my worth
If I knew then what I know now
Would've not been hard to figure out
What I would've changed if I had heard

Dear younger me
It's not your fault
You were never meant to carry this beyond the cross
Dear younger me

You are holy
You are righteous
You are one of the redeemed
Set apart
A brand new heart
You are free indeed

Every mountain every valley
Through each heartache you will see
Every moment brings you closer
To who you were meant to be
Dear younger me