What I Wouldn't Give

Throughout high school, you take all sorts of trips to different colleges doing various things. I went to EFY, percussion competitions, debate camp, and debate tournaments. During such a voyage, as a high schooler, you experience the joys of what it would be like to go to college, live away from home, make new friends, live in an apartment/dorm, etc. It is fascinating! Life feels awesome and you just can't wait to get out of the house! ... While I wasn't quite that way, I was always so excited for the next step in life.
From debate trips, I had learned that I LOVED Berkeley. I also thought about BYU-Hawaii. I thought that the "worst" I would do was BYU (Provo). My mindset didn't change after the accident; so of course I still applied to numerous other schools. But despite my outstanding grades and great ACT score, I didn't get in; I was confused. (I now know that I couldn't have handled it and it was God's grace). So I still went to BYU... or attempted to. Long story short, the college life that you imagine, dream about, that truly is out there for everyone simply couldn't happen for me.
So devastated, I moved back home; took one class, then quit school for almost 2 years. The size of BYU campus was enormous and overwhelming, so I didn't even entertain the idea of going back there. But I went to UVU the summer of 2013. I hate UVU. Even though I now have a degree from there, with a 4.0, I hate UVU. It is a nothing school to me. I don't care if it is the largest -number wise - school in Utah. I don't care if it is on the rise. It is a nothing school. I can't believe that I had to resort to a nothing school. I mean it's already hard enough that I couldn't graduate with a bachelors in 3 years and then go on a mission. It's hard enough that it took me like 7 years post high school to get a freaking 2 year degree when I already had most of a year's worth of credits graduating from high school. It's freaking hard enough that I have to wrestle with the pain of everything that I once saw myself as, and still don't understand why I can't be that, let alone that I have to admit that my degree is from a nothing school.
What's more, is that I got to my doctor's appointment early on Friday afternoon. So I parked my car and went walking around the hospital, which just so happens to be right next to BYU campus. I saw the Wendy's that we would go to during EFY. Then I saw Pita Pit and remembered all of the fun I had there during debate camp. Then some college kids walked past me and my heart sunk to the center of the earth. This is what all of those high school dreams were! Walking to classes, making new friends, walking just off campus to Wendy's or Pita Pit. It hit me like a semi-truck load of bricks that I will NEVER get to have that kind of journey. Ever. What I wouldn't give to be able to walk from class to class. "But Shannon, the stress is terrible." What I wouldn't give to be able to take so many of the classes that I want to take - in one semester! Even just for one semester! "I don't know Shannon, all I do is study, work, and go to class." What I wouldn't give to make friends with people in my major and have those kinds of study groups. Or be able to learn that much about what I love! Or be able to make money, or be able to feel productive! "Alright, fine, I'll switch you!" Oh my goodness! If you even had a clue!!! You would not switch me no matter how much stress you're in, no matter how lazy you think I am. If we could switch shoes for even 20 minutes, I am so sure that you would beg to be back in your hectic life.
What I wouldn't give, not to switch anyone, because I wouldn't wish this on anyone; but what I wouldn't give to have the ability to focus, to read, or study, to walk across campus, to make - and keep - friends, to share thoughts. to be too busy, to have a job, to have a life! (All credits go to Tonya for that last line. :P "Get a job, get a life!")

Let It Be Known!

As I've been discussing the challenges of living with a brain injury to different people today, I have received an immediate urge to shout from the rooftops the extremities that people simply do not understand. It is of critical nature for those supporting someone who experiences brain trauma to seek knowledge in this topic. As is with any difficulty we face in this mortal existence, although magnified, trauma to the brain is something that absolutely cannot be managed alone. While I will never dismiss help from the other side of the veil, there are far too many times that the veil feels a little bit too strong. 

First thing I find I need to reiterate is the deviation magnitude of resources. Any average person wakes up with a jar full of resources. After a bad night's sleep - maybe a pocketful less, but no where close to as low as someone with a traumatic brain injury after the best night's sleep they can possibly get (which is not very great). Then, while it takes average person, say Joe, maybe 3 resources to get up, get ready for the day, grab something to eat and head out the door, it takes someone with a TBI a large handful. Joe then can go to school, work, come home and make dinner, do some homework and then hang out with friends before he goes to sleep and wake up with a full jar of resources again. But getting up,driving, and going to PT can take all of my resources for one day and then some. Life is EXHAUSTING!! 

Additionally I feel very compelled to stress the reality of frontal lobe injury. House MD 5x17 depicts a good example of a frontal lobe injury. The loss of filters and inhibitions is very real and as I watched this episode, I began to more fully understand why all of my friends left me so quickly after the accident. Although, unlike the man in this episode I had absolutely no idea or concept that what I was saying had any affect on anyone. I couldn't see that it was hurting people, and Is couldn't even remember what I had said moments earlier. I legitimately started to tear up when he says that he would rather die than go home and run all of his family and friends away from him. I couldn't comprehend consequences then, but living them now isn't fun. There is another key difference between this man and a brain injury - his deficit could be removed; ours can't. His was an attack, ours is an empty hole. In his case, they took the army away and things got better; for TBI survivors, we have to learn a new pathway around the hole. 

Please, be patient with us as we try to navigate our way through this new life. Help us to grieve the loss of our old selves as much as you need to grieve that same loss. Remember that we are in this together, even when it feels like those of us with traumatic brain injuries are awful. We are dealing with every kind of loss imaginable - loss of abilities, loss of everything we knew, loss of everyone around us, loss of regular environments, loss of daily functions, and loss of self. So yeah, we get angry. We're not actually angry at you; just at all of the changes that took place so suddenly. 

I don't know how many people still check my blog. I don't know how many people this will reach. But I feel these messages need to be made known to the entire world. So, if you are in a position where you might need someone to come and speak for a few minutes, please send me an email or give me a call. If you agree with what I am saying, share it on your social media feed, etc. Please, help me spread the word. Help me inform the world that brain injuries are real, they are tough, but we can make it through with support of others!

Uniquely True

There is something incredibly unique about the true gospel of Christ. Whether it be messages from prophets of old, modern day prophets, voices from members, notes from yourself, conversations, places you visit, etc. there can always be a different, meaningful impact on each individual during each phase in life. I have been blessed to be born in the church of Jesus Christ of Latter Day Saints, the only complete true church on this Earth. I don't know when exactly I gained a solid testimony, or when I learned to absolutely love the gospel and everything within; but I know I've had a very concrete testimony for a very, very long time.

One of the things that I get most excited about is my music. My music is unlike anyone else's. The vast majority of what is on my music library is produced by LDS artists. Whether it be Beautiful Life by Mercy River, More than Enough by Cherie Call, He Loves Me by Hilary Weeks, or so, so many more, there can be a different meaning at each crossroad you go through. One of the coolest experiences I had with my music was when I taught a lesson in Relief Society on the talk Spiritual Eclipse by Elder Stevenson. I played the song Somebody Else's Shoes (yet for me to put on youtube) by Cherie Call, then I asked what people got from the song and how it applied to a spiritual eclipse. The responses I got were incredible!! They were so different yet so applicable!! Some people picked up certain lines that other people completely missed, while other pieces prompted someone to change something in their lives, it was amazing!! I too, have experienced crazy new applications to songs I've been listening to for more than 10 years!
One of the my greatest blessings is my ability to follow in faith. There was a talk in October 2007 General Conference that has changed my life multiple times over because of this ability. This talk is called O Remember, Remember by President Eyring. When he gave this talk, something spoke to me saying "Shannon, you have to start a Tender Mercies journal, today!" So I did just that. It blessed my life a lot going through the trials of junior high and high school to remember that I was still being cared for, watched over, protected or comforted. And after the accident it has quite literally saved my life. During some of the most challenging times in the psychiatric unit, my mom made a copy of some of the entries and gave them to me. As I was reading them, I was reminded of those things I learned as a young teenager and that Heavenly Father really just might have a plan for this broken body of mine.
I know that my Savior lives. I know that He loves me as much as He loves you (even though I don't often feel that way). I testify of His reality, of His eternal sacrifice, and His matchless love. 

25+ Ways to Pay it Forward

I haven't been doing so great or feeling so well. And my 25th birthday is in less than a week and I'm already hating getting another year older. But I think there is something that you could do to make my birthday a little easier on me. Go forth, shine the light of Christ, and pay it forward. Then let me know what you did and how it made you feel. I've found that service helps me when I'm feeling down and discouraged, so I've made a bunch of "service sticks." These are popsicle sticks that I've written a bunch of ideas on so that I can draw from the jar everyday to help me feel a little better. From these sticks, I'll share all of my ideas with you so that you have plenty of ideas on how to pay it forward. Let me know how things go and thank you for the birthday present!!

·      Give someone a movie package
·      Write someone an anonymous note with things you like about them
·      Volunteer at disabled learning/institute/ seminary/ High School
·      Offer to babysit for free
·      Send dessert to another table
·      Load coins in vending machine
·      Plan a vacation for mom and dad
·      Make someone breakfast/lunch
·      Send a box of muffins/bagels/donuts to workers somewhere
·      See what is needed at the soup kitchen
·      Blankets, jackets, shoes at homeless shelter
·      Organize dinner/potluck
·      Donate crayons and books to hospital for kids
·      Hand out balloons to kids
·      Visit justserve.org
·      Pay for someone’s movie ticket at theater
·      Pay for next person in line at a store
·      Take someone out to lunch
·      Give someone a massage
·      Deliver flowers to [grandparent]’s graves
·      Leave happy notes in library or store books
·      Give someone a $5 gift card
·      Write a letter to an old friend
·      Do yard work for someone
·      Invite someone over for dinner
·      Leave positive sticky notes on desks
·      Clean someone’s [toilets]
·      Write [filipino] kids/orphans
·      Leave head’s up pennies on sidewalks
·      Bring treats to an office
·      Take dinner to someone
·      Go out of your way to give someone a ride
·      Tape popcorn to a redbox machine
·      Make first aid kit for someone
·      Mow someone’s lawn
·      Write unexpected thank you note to someone
·      Throw someone a surprise party
·      Volunteer at animal shelter
·      Make a CD/playlist for someone
·      Invite someone to go on a walk
·      Write friendly messages with chalk
·      Take a treat to someone
·      Write a letter to an old teacher saying thanks
·      Give someone a flower or bouquet
·      Make (fleece) blanket for homeless shelter
·      Deliver a fruit basket to someone
·      Visit an old folks home
·      Play [football] with someone
·      Buy and pot a plant to give to someone
·      Write letters to missionaries with care packages
·      Volunteer in community (ex. Boys and girls club, big brothers/sisters, children’s justice center, CASA)
·      Bring a homeless person food and drink
·      Make a quiet book for kids to give to families or missionaries for their investigators
·      Send a photo in a frame to parents
·      Send someone an uplifiting song
https://www.naturalbeachliving.com/acts-of-kindness/

8 Years - Unapologetically

It has been an interesting, incredible, fascinating, remarkable journey for the last 8 years - or at least that's what I'm told. Most of those 8 years, I don't remember; some of those years, my brain wasn't functioning enough to be a reasonable person - heck, that still happens sometimes. While neurons do not regenerate, my brain is constantly trying to find new albeit longer and harder pathways to do simple things. Even though the regular developmental processing of my brain was inhibited, I had to create new goals, new dreams, and possibly hardest of all: new expectations. I was not, am not ready for that. I still feel like I'm 16 in so many ways. I mourn every day the loss of all of my friends, hopes, plans, dreams, etc. I cannot do the things that I once could do (and for a long time thought that I still could do) but I feel like I should still be able to. I look normal on the outside, for the most part, I act normal and when something happens that isn't normal, I apologize like crazy. It doesn't make sense for these kinds of irregular things to happen to someone who doesn't have a TBI, and ironically my brain doesn't think I have a TBI. For what I have had control of, I've tried to rationalize, explain, justify all sorts of things.
This trip was so wonderful in so many ways. Wherever I was, whether it be in an uber in Taipei, at an orphanage in Bacolod, in the heat of extreme humidity, I was loved and accepted for who I was, despite any character flaws, physical flaws, or cognitive flaws. I didn't have to feel ashamed of any part of me; I was involved in things that I love and no one was questioning me about any of it. I decided it was finally about time to do what I've wanted to for a long time - embrace the compliment I received from Melissa Larsen "You are unapologetically you." I love this! I want to be unapologetic, unashamed, authentic, genuine; me. I've been afraid of offending, looking stupid, being ostracized, etc. But on this trip, I resolved to return to my roots, stop caring about what others think, embrace what makes me happy and be unapologetically who I am.
On my anniversary, I was exhausted. We were in Cebu city so that we could attend a temple, and I had been going so hard for 10 days without much sleep. So while I slept most of the day after we attended the temple, this day didn't seem so grim. It wasn't quite so dark and heavy as it has been in years past. I didn't feel the need to pretend to tell the world that the TBI had no effect on me. I felt like I could adapt with the TBI, do what I needed to do, find happiness where it needed to be found, and feel good in all of it. As much as this day always reminds me of how great my life once was, and how much harder it is now, my 8 year anniversary had a little different perspective. Being in foreign lands, worlds that are FAR less fortunate than ours, places where the gospel of Jesus Christ truly is a miracle, and knowing that I could stand as a witness made my decision to come back a little less painful. Please don't get me wrong, the pain is still there, and still very, very real; but having people look over all of my struggles and simply love who I am, that made all the difference.
P.S. more stories about the Philippines to come!!

For Reals. Finally.

      The time has arrived. I will finally have my associates' degree in 3 weeks. It is not much, especially for a straight A, top of the class, over achiever who graduated high school in 2011. But, as much as I don't believe it, it is remarkable for someone with a traumatic brain injury alone; despite the fact that mine was both a diffuse axonal injury and a subarachnoid hemorrhage; the intricate details that I received the lowest possible score on the Glasgow Coma Scale, and was on life support for 2 weeks while medical professionals asked why. It is remarkable that when all the doctors told me not to go back to school, I did; I went back to graduate with my class, still taking 3 AP classes. And I got another very invasive surgery shortly thereafter and tried to go straight to college. When that didn't quite work, I didn't give up though. I kept trying at school for years until I am at the point now where I finally have a degree. And yes, it may be a small, seemingly worthless degree, but given my history, it is a symbol of strength. It is proof that I have determination, I have drive, vigor and a love to further myself, no matter the difficulties. The social view of an associates' degree gets me down, and discouraged all too often. I need to remember everything that I've been through and the fact that I understand all of the medical terms I have described above and so many more is in fact, remarkable. The unfortunate thing is that I can't see myself in terms of yesterday, today, and tomorrow, nor can I see myself in terms of eternity, I can only see myself in terms of "lasterday" (before the accident). So I cannot see how far I've come, I cannot see how much I've grown, I still can only see how much I've lost. This is not something that I can just fix or change, this is physical damage that occurred during my injury - and neurons do not regenerate.
     After I have finished school however, then I will be going on to a completely different track. This is something I introduced a number of months back. I will finally be traveling to the Philippines. My dad and I will leave on the 3rd of May and travel for a LONG time before we finally arrive in Manilla. We will visit 3 different islands in the Philippines, but stay mainly on Negros, where my grandparents made great friends with people who give great services to other Filipinos. While on Negros, we will be staying in the city of Bacolod, visiting with Ben Candari and the Livelihood Assistance Foundation (of Philippines) as well as Ritchie Olivares with the Home of Hope (orphanage for abused, abandoned, and homeless children). This is where most of the donations will go, as Ritchie has asked for much help. However, there is still much need for donations, which could be made either directly, through gofundme (https://www.gofundme.com/myworldtoyours) or something like the following: write your testimony, draw a picture, have your kids or kids in your classes do those things, etc. Don't feel any pressure though, especially at this time of year, I of all people understand that other things take primary focus. I am so excited to serve my brothers and sisters of all ages around the globe for about 2 weeks in less than a month! My love reaches out to every nation, and I'm thrilled to see it in action!

Resources

I currently have 15 drafts of blogposts that I want to write. 15! But I also haven't posted much in a really long time, so something is wrong with this picture.... Well, it's called I have a TBI, and very limited resources. What do I mean by resources? Let me illustrate this reference we use so often.
An average person (someone without a TBI) starts everyday with 100% of their resources. Like this picture of a jar full of jellybeans. As you go throughout the day you use resources - thinking, observing, working, etc. So for this average person, getting ready for the day might take 2 of the jellybeans out of the jar. Going to school, maybe 20; going to work, depending on how much you like your job 10-50. Relaxing puts jellybeans back into said person's jar. That's an average person...

For me, and people like me (people with a TBI), we don't start with 100% of resources, probably more like 60%, like you can see in the picture to the right. For me, getting ready takes 15-20 jellybeans out of this jar; and there really aren't enough to take that many out. (Hence why I almost never get ready!) Going to school takes out at least 45 resources/jellybeans. By this time I've got practically none left, so you can see why I can't go to school and work at the same time. There are numerous things that drain my resources all the time as well; things like relationships (or lack thereof), messy areas, constant pain, and most importantly stimuli - including temperature changes, sights, noises, smells/odors, tastes, etc.  What makes things even worse is that "relaxing" can be extremely damaging as well. The way that the average person thinks of relaxing is devastating for me. The best way I can relax is by doing things that overly involve my brain (like Sudoku) or by watching Psych! Unfortunately however, neither of those things work every time. And even at that, it doesn't exactly deposit jellybeans back into the jar either, or at least not very fast.
So it doesn't take very long for my jar to get completely empty, when the average person's very rarely ever does. When the jar does get completely empty that's when I am too exhausted to do anything for myself - including fall asleep. Yes, it takes resources to fall asleep and sleeping in and of itself barely replenishes resources.

Low Update

Update on life: First of all I didn't realize how long it had been since I had posted. My life has been pretty bad for the last little while. I am not sure if I don't want to post because I want this blog to be a message of hope, or I don't want to be accused of just seeking pity, or being the victim, or simply because every second of my life takes enough of my resources that at the end of the day writing a blogpost is just more than I can handle. Either way, I have hit a low, and at times, this low has been deeper than it has been in years. I'm in school again which is always extremely difficult; this time I'm taking a few physically demanding classes which literally makes me come home and cry. I'm also in a Chemistry class that I think I really understand but I just found out I scored way worse on the test than I thought I would. And it's at 10:00 everyday - my schedule saying I should be up by 6:30 every morning - and for the first time in my life, I need to sleep in. I skipped this phase as a teenager, even as a post-TBI survivor for a very long time. But it appears my brain may very well be doing so much repair work while I'm sleeping that waking up early halts all that progress and sends me for a big loop. I have been without a roommate or friend for quite a while. Vocational Rehab also changed up counselors and my new counselor does not understand anything about TBIs. TBIs are very challenging to work with, but they are much, much more challenging to live with. We are still people and we deserve to be treated as such. Just because we (everyone with a disability) have limitations does not mean that we are any less of a person. I've known this all my life, and now I know it from firsthand experience. I still think critically, intellectually, logically and emotionally. I have greater limitations than most, but I also have greater empathy than most. I say all of these things not to raise my high horse but in an attempt to believe that I am worth something when everyone, everywhere, and everything around me tells me I'm not.
The real reason for writing this post: I do not feel like I could do my grandmother justice if I honored her in this post after everything I've just written about myself. So I won't do that. I will write a little now, and have a detailed post hopefully later. My last living grandparent, my maternal grandma passed away at 10:55 on February 1st. So many things that were unfortunate about the timing of all of this, including it was just over an hour away from my parents anniversary. For some reason my grandparents like to leave me right after a prophet leaves me too. So as if all of the losses from the accident weren't enough, let's add some more on.