Cognitive Disability

 As a society, we recognize 2 types of disabilities; visible physical disabilities and intellectual disabilities. While some people who suffer a chronic TBI do end up with one of these kinds of disabilities, I do not. Yet, I do still have a disability, one that is very hard to explain. Or at least that's what I said to my speech therapist a couple weeks ago (speech therapists do more than just help with dictation). But he said, "no, it's not!" He proceeded to explain that intellect is about knowledge and cognition is about processing of that knowledge. Or in other words, I don't have a problem with information, I have a problem with processing. To prove it, I'll insert a quippy line I thought of while writing this post: I'm still sharp as a tack, but no longer quick as a whip. :) 

My understanding of processing has evolved - it has had to. Originally, I thought processing, at least in regards to this, was about understanding information. And while that is definitely a part of it, and yes, learning does take much longer and is such a strenuous effort now, that is far from all of what it means to process information. Processing also involves how you go about organizing and completing a task or project. This is key. I'll talk more about this later on. But even with these 2 explanations, I didn't feel quite satisfied that it explained everything that I experience. So, I went looking for more definitions across the internet. I came across many different definitions, such as:  the act of mentally or emotionally absorbing and making sense of what one has experienced or perceived; the act of ... making decisions and following up with appropriate action. Things started becoming clearer (especially with my dad's explanation that I'll write later on). Then, while writing this post, I realized that I knew what processing disorders are when they are associated with a single sense, such as an auditory processing disorder, a visual processing disorder, or even a sensory processing disorder! But I had yet to integrate all of these different senses (including smells, touch, taste, and just plain thinking) into my understanding of what a "cognitive processing disorder" is. 

The organizing and completing a task is the part that I think is most extreme with an injured brain. Let me illustrate by using an obvious example, but think of it applied to every aspect of life. You're making cookies. There are multiple steps. A "normal" person doesn't have to even think about these steps. But someone with a head injury not only has to think about them but will get the sequence out of order and will end up frustrated, confused, feeling stupid, and belittled. Furthermore, (my speech therapist says) we can't hold more than 1-3 tasks in our brains at a time. Someone with a head injury could, in theory, throw all the flour on the cookie sheet, preheat the oven, crack an egg on top of the flour, then get out a bowl, put sugar in the bowl, and a tablespoon instead of a teaspoon of salt, mix that up, throw that on top of the egg on top of the flour, then put some baking soda on top and then top it all off with chocolate chips before putting it in the oven to cook. Do you think cookies will come from that? This is broken processing in action.

While this example is extreme, it illustrates the disjointed way that the processing can occur in everyday activities, which is where the disability really applies. The simple, monotonous tasks like getting ready, picking things up, hanging up clothes, putting dishes away from the dishwasher, etc. It's not like I don't know how to do these things. It is because the ability to use that knowledge has been disrupted due to the broken brain. These extra difficulties cause the brain to become frustrated. When the brain is frustrated, the person understandably gets irritable and angry. Which, among other things, is why a person can seem so irate, irrational, and mean after a head injury. It takes time and a lot of work to accept that this is the way life just is (aka radical acceptance) and stop letting your brain's frustration show. It takes so many resources to do these every day simple tasks, especially while managing the fire in your brain, that in order to preserve these resources, it is far easier to avoid doing these tasks completely than waste them on stupid things that we should be able to do no sweat. 

 I'll talk about ways that my speech therapist has suggested to deal with this in a future post, but for now, I thought it was important to help others understand what I am just beginning to process. ;) 

Chaos

I’ve talked about how frustrating the invisible nature of a traumatic brain injury is before.  Today I am going to address it but in a slightly different way, one that can likely apply to many more people than just those with unseen injuries. We all have different masks that we wear in different situations. When you are meeting with your boss, you don’t want to display all of your pains and complaints; but when you are meeting with your doctor, you may very well want to do just that. This conditional expression of our feelings applies especially to mental health. Even when we appear to be doing “fine,” we may be experiencing turmoil and distress just beneath the surface.

              This prevailing sense of “I’m not okay” often comes from a feeling of complete and total internal chaos. This chaos is something that cannot be seen by others, (except the rare times that an anxiety attack emerges). But my brain, like many others, is constantly on fire, while trying to extinguish the flames of chaos.

              Something that I have studied and advocated for a long time is the chaos of your external surroundings are often a good indication of the chaos of your internal world. And one of the best things to do to restore order to the chaos inside of your mind is actually to organize something in your external world. Somehow, it actually allows your brain to sort through and organize some of the crazy thoughts or synapses firing all the time.

              So, with that in mind, you would think that my house is ALWAYS a complete mess. But, remember what I started this post with. Someone can still be in immense chaos, even if it is not seen. Therefore, my house can appear very clean sometimes, but I have no idea where things are, my drawers are a mess and I feel such a lack of control that I become incapable of doing anything at all.

              This is the place I have been in literally ALL year long. And I have been so frustrated with myself for it. I have felt worthless and stuck. So, if I ended the post here, while it may help give someone a voice, it would still feel pretty hopeless. However, last night, I received a priesthood blessing that changed everything! I was reminded that when God the Father created the Earth, He looked upon it and saw it as good. But He also saw that there would be much chaos that would descend upon the Earth. He saw that there would be a great upheaval that needed a Deliverer. So He sent His Son, Jesus Christ. Through Jesus, there was order, there was peace even amongst all of the chaos. And even among the great, miraculous, and infinite source of peace Jesus created throughout the entire universe, He will still be my individual vehicle for peace throughout the tumultuous seas inside my broken brain. In fact, that is the only way to overcome the constant chaos within me. I must pray to the Father, in Christ’s name, to help master the chaos I feel.

Finding Peace in Pain

No one can even fathom what it feels like to live my life. Everything I do, I'm constantly surrounded by triggers to my PTSD. I talk somewhat often about how pain is very relative and my "level 4" would probably kill the average person. Some words carry more weight than a ton of bricks to me whereas to others it's just any other word. Even worse, one of those specific words - abandonment - is one that not even my best friend for the longest time post accident (love you Trish) has much of a clue about because it's something I still just can't talk about. I learned that a few months ago when I mentioned something about High School graduation to her and she hadn't heard the story.... Because some things are still too painful. Heck, there are quite a few memories that I don't even have access to because my brain simply will not allow me to remember them. I still have dire aversions to situations, or strange longings that I don't understand, but no memories of situations or people. So please, do not misunderstand me in the second half of this post. I am not saying that my life is easy; I am not saying that I enjoy any part of it. However, I wouldn't trade my knowledge of this gospel for anything, especially given everything that I go through. 

I believe we each have a special "dispensation." This means that the Lord, and our Heavenly Parents have a perfect understanding of our lives - challenges, strengths, abilities, afflictions, etc. Most people's dispensations fall much closer to the "ideal" mold. Mine however, most definitely does not. My Heavenly Family know of my deep, deep desires to be better, to learn more, to take care of my body, to have a deeper relationship with them, so on and so forth.... They love that more than I comprehend. But they cry with me when I am so frustrated by my limitations. They are sad when I beat up on myself for not running faster than I have strength. Our Heavenly Parents are much closer and integrated in our lives than we fathom. Heavenly Father wants nothing more than to talk to us, to build/re-build a relationship. He knew that in order for us to grow and attain all He wants to give us, there had to be a veil. We had to face temptations, evil, and carnal desires. It hurts Him when we try to face the world on our own, refusing to ask Him for help. He always wants to help us. It may not happen the way we always want, but His desire is always there. We can't always just expect His will to happen because He respects our agency. He rarely takes away our struggles or pains, but instead He offers strength so we can face it. 

5000 Days

I often think back on the Shannon I became in the first ~16 years of my life. I look back on her with great honor, respect and admiration - all for good reason. She instilled within me a passion for learning, an unconditional love for all my brothers and sisters in this world, a joy for celestial music, a yearning for knowledge of truth and eternity, courage to take on this ugly world, faith to withstand any persecution, and the valiance to face it fearlessly. What I didn't know then was just how tumultuous all of that could mean. 

Did early saints know how rough the road would be when they left their homes behind? Did Paul know what he signed up for when he agreed to testify of Christ? Did Daniel know what would happen if he chose to pray? Did Nephi know what the Lord would command him to do after he promised that he would be obedient? Did Joseph Smith know how persecuted he would be after going to the woods to pray? 

No. They did not. But the Lord, in His infinite mercy and love, said, "okay, prove it." In like manner, I used to say, "I'm grateful it happened to me instead of someone else." So, I can imagine the Lord, in an infinitely loving way say, "prove it." 

All of the pain, tribulations, heartache, etc. is not a way of the Lord punishing His own. But rather it is a way to sand off the rough edges, to be shaped and molded like clay, to wash away all the flaws and earthly imperfections, to be refined by mercy's fire. He does not enjoy watching us cry, but in His infinite wisdom, He lets us learn from falling, just as we do when teaching a baby to walk. After all, if we do not learn from falling, we'll never learn to walk; and if we do not learn from ourselves, how can we trust what we know?

"Everyone will fall a time or two, and time and mercy heal the wounds. But the most important thing you can do is whisper a prayer, then as soon as you dare, try again. .... Even if the world has seen you crying, try again. And the Lord will see you through, and He'll be there to catch you when you fall."

So, through everything I've been through over the last 5000 days, I hope that despite all of my failures, my heartaches, my turmoil and pain, I hope that maybe I have done what I said I'd do when I told God I would return. Because "I am living proof that His love is real." "He heals, He knows, He gives, He cares, He hears, He shows, He's always there, and I'm living proof." 

P.S. thanks to Cherie Call and Hilary Weeks for their beautiful songs linked below 

Prove Me - Hilary Weeks 

Try Again - Cherie Call

Living Proof - Hilary Weeks

I Choose to Go Back

My anniversary (May 12) is super hard every year. Every cell of our body remembers trauma and anticipates anniversaries of severely traumatic events. I have found that it helps for me to get feedback from others. I'll ask them why they are glad that I chose to come back after my accident, when I could've stayed on the other side of the veil. Or I'll ask what kind of difference I've made in their lives. Sometimes it's helpful just to know that I have made an impact, even if it's very small. This year, I asked my good friend, Matt Whitaker to write a letter or make a video for me. He told me that when he put his pen to paper, it came out as a poem. It is the most beautiful poem I've ever heard. So, with his permission, this is the poem. 

“I Choose To Go Back”

She felt the love of Heaven’s Embrace,

Saw the light of a Heavenly Face.

Then heard the words: “They’re pleading for you.

What, dear child, would thou have me do?”

And as she looked into Eternal Eyes

She could hear the echoes of her family’s cries.

And her heart was filled with the faith to ask,

“Would it be alright if I chose to go back?”

In response came a gentle nod

As grateful tears filled the Eyes of God.

“I love you, child, with all that I Am,

For your valiance and trust in the Eternal Plan.

I know that you know how hard this will be

To go back through the veil of mortality.

Back to a body that’s broken and bruised.

Is this what you want? Is this what you choose?”

She paused for a moment, as if deep in thought,

Considering something that she had been taught

By her mom and her dad, her sisters and brothers,

That happiness comes in the service of others.

And so, with a heart filled with hope and with kindness

She squared up her shoulders and made up her mind

That no matter how hard or how steep the path,

She would do it for others, she would choose to go back.

And knowing down deep in her soul it was best,

She whispered to Heaven the Word: She said, “Yes.”

With one more embrace, one more lingering smile,

God spoke to her heart, “I’ll be with you, my child.”

Then turning, she made her way back to our side

Of the veil, where she could only gently confide,

With the squeeze of a hand, “Yes, I’m back and I hear you.

And I want you to know that I chose to be near you.

And often I’ll ask for your help as I go,

For blessings of strength and direction to know

How I can serve and progress on the path,

How to remember I chose to come back.”

And so every morning she picks up her cross.

She shoulders the pain and the lingering loss.

She makes her way forward one step at a time

Up the path, up the mountain she promised to climb.

And with her example we look on in wonder.

“How does she carry the burden she’s under?

How does she reach out to others beside her

And pick up their crosses and make them feel lighter?”

The Answer, of course, is the One that she follows,

The One who carried the cross made for all

Of our sorrows and trials and troubles and pain.

She knows He’s the Path back to Heaven Again.

And that’s why she asks for our help on the way

That’s why we’re blessed and able to say

That because of our weakness and all that we lack

We’re so grateful she whispered, “I choose to go back.”

Beautifully Imperfect Family

 God is perfect in His omniscience, omnipotence, and omnibenevolence. He knows all things, He has the power over all things, but He also has the perfect love for all things. His deepest love is for His children, you and me. Before Earth, I believe that we were able to consider the trials and challenges that we would face. God the Father knew the perfect situation to put us into to allow us to flourish - sometimes in this life, and sometimes not. But more importantly, He knew what we would need to get through the hardest of times. For me, one of those supporting figures is my dear family - near and far, old and young, close and distant, with all of our imperfections, nay, because of all of our imperfections. After all, these imperfections is what makes me able to thrive. 

I have been extremely blessed into a unique family situation that very, very few others have ever had. I am the youngest with two sisters with disabilities. This has been exactly what I've needed for various reasons, but I'll get to that in a second, let's back it up first. My paternal grandparents - they were/are the most incredible people anyone had the chance to meet. It saddens me greatly that I can't remember much about them. But my grandma was incredibly loving and generous. She was an incredible baker and she loved to bring joy to others by baking. I remember sitting at their house with my grandpa eating homemade round bread with homemade jam and chocolate milk. She knew how to make the perfect pies and would deliver them to people on a frequent basis. She had the ultimate green thumb, but most importantly, she loved her family. With my grandpa, they built a foundation for an eternal family that would stay close - 2nd cousins, first cousins twice removed, and beyond. My grandpa was a chemistry professor at BYU and he developed debilitating Parkinsons later in life. Yet, he was a man completely without guile. Even as he watched my grandma suffer and die from cancer, he never complained. He never had an ill word to speak about anyone - even after they would steal, lie or cheat. He taught important truths of eternity using fundamentals of chemistry. I never knew my mom's dad because he died before I was born. But I know that he was a hard worker and that my grandma worked the rest of her life to be back with him after she died. That grandma was always the crazy old lady - at least that was my young child interpretation of dementia. But I got to know her on a more spiritual level as she was about to leave this Earth. During this time I came to understand how close she was to our Savior; how she wanted to bring all of His children back to Him in any way she could. She went on 7 (I think) missions - even a proselyting mission in her 80s! - and she did so much family history work. She expressed a desire to be "home," and while others weren't sure what she meant because she was at home, I knew. I knew that she wanted to be home with Father in Heaven because of my same desires.

Then we have my parents. My dad is very smart. He can put things together and synthesize things that no one else can. I got my intelligence and my left brain thinking especially from my dad. My mom has the most sincere and genuine heart. She can listen and reassure in ways that only she can. I often say that my dad is my head while my mom is my heart. When I have intellectual issues, I go to my dad; but when I have big emotions, I go to my mom. She often feels that intellect is more important, because that's what society places higher value to. But I could never be where I am today without her unique influence on my heart and spirit. Not to mention that she helps me with all sorts of other things too, like organizing, cleaning, gardening, cooking, etc. Although, despite all of their traits, the thing that is most beneficial to me is all of the hardship they have endured as a married couple. Having 2 children born with disabilities was anything but easy. Having all of their children be so diverse in ability, personality, spirituality, etc. was also difficult. And then, there was my accident. But I don't believe I could've been any luckier than to have them as my parents. And yes, of course I have siblings to thank for that as well. 

My second oldest brother, Nathan has a daughter who developed leukemia when she was only 3 years old. Because of this, my brother does everything he can to better understand what it feels like to have a brain injury on a personal level. My oldest sister, who is 12 years older than me, was born with Rett Syndrome. Rett Syndrome is a genetic anomaly that halts development around 18 months old. Boys don't usually live past 2 years old. It varies for girls but there is no prognosis after they reach 40. My sister is almost 42, which is a miracle in and of itself. But she taught my parents a lot about learning and adapting to unrealized expectations. She taught my parents a lot of patience and empathy. She continues to teach them to love someone beyond their disability. And then there is Tonya. She has her own unique set of disabilities. But, Tonya is the most amazing friend and sister anyone could ever have. We have always been the best of friends - long before we came to Earth - and I believe that we agreed to always have each others' backs when we needed it. In this way, she is my "borka." (It's a word I made up, don't worry about it. The meaning of it is everything that Tonya is to me and everything I am to Tonya.) She still doesn't always understand the brain injury, but she is aware that there are times that I am just sad, frustrated, upset, etc. because my "brain is broken." And in those moments, she is there for me. She will hold me, cuddle me, or bring me a kitty cat when that's exactly what I need. She doesn't know what to say, and that's more than okay. Often times, there isn't anything to say. She loves with all her heart. And I can feel that love. 

I also have 2 more wonderful siblings, Aaron and Kate, but the point I'm trying to make is that our Omnipotent Father in Heaven knows exactly what we need and he places trials and tragedies in our lives for a purpose. He knew that I would need a very understanding, compassionate parents and siblings who knew firsthand what disabilities can do to a person. He knew I would need a close extended family to call upon when all of my friends left me. He knew that I would need the gospel in my life, He knew the exact family I would need to be able to endure through something as hard and as terrible as my unique traumatic brain injury. 

Lost All Hope

 Since the holiday break, I have been a total mess. My anxiety has been through the roof. Nightmares have been constant, and worse and worse. Therefore sleep barely happens and when it does it's anything but restful. I have given up on so many things in life. I've given up on having a head/face that is in any way, shape or form normal. I've given up on having a body that actually works. I've given up on the chance of ever finding love or even a friendship that will last very long. Heck, even having many friends that won't later give me more abandonment issues. I've given up ever feeling happy or just not anxious. I've lost hope. I've given up the idea that the second coming is right around the corner, which is where all of my hope came from. I've given up the idea of ever looking or at least feeling beautiful. I've been forced to give up all of my hopes and dreams and attempt to create new ones. Cautiously I'd try. But I have no hope in anything at all anymore. 

I released the podcast hoping it would give me a sense of purpose; feeling like I could help someone. I know that none of the episodes so far would do that, but I have been stifled and unable to produce anything since right before the holidays. What is currently being released was pre-recorded. I can't seem to find it within myself to finish a script. I can't finish anything. 

I don't want to do anything. I haven't felt this low in a very, very long time. And I don't know how to pick myself up from this one. When I have been this low before, I didn't have as clear of a head on my shoulders. I thought that suicide was the answer. I know now that wouldn't solve anything, and would only make things worse for those I love. I had backup supports, medications, things I enjoyed, etc. But those things are gone, no longer work, or are no longer enjoyable. I don't have a prescription for this one. I've learned (the hard way) what to do every other time. But this time, today, for the last month, I just don't.