Recruitment

This word was used by my Speech therapist. We were discussing my speech challenges. In this discussion I learned how our body and mind are able to function despite challenges; recruitment.

This refers to the minds ability to engage surrounding muscles and structures for support when part of the body begins to fail. In my case it affected my shoulder function on my left side, my hearing loss, and my ability to speak.

In speech the surrounding muscles of my throat were engaged because my lungs and trachea were unable to perform the necessary muscle contractions in order to speak. After a time of trying my brain engaged the surrounding muscles, or recruited them to help. This was not a short-term solution and created a voice that was whispery and raspy by turns.

I would become extremely tired and would lose speech after a short time. I had trouble controlling volume and regulating tone. Most importantly the physical pain and strain on my neck added to the emotional pain of not being able to express myself or being heard.

I was given a variety of throat exercises designed to ensure that I relearned to use and engage my muscles correctly. Within a short time my voice felt and sounded more natural. The pain is decreasing and I am better able to express myself verbally. It is still challenging and I have to stop frequently to engage the correct muscles as I retrain my body.

We call this opening the cage. I have been given visualization tools such as imagining a cage around my voice box. I am to imagine it trapped and held. My ST then has me picture the cage opening and letting my voice free. This is powerful imagery and has so many emotional components. I know many, after brain surgery, struggle with speech and being heard. We struggle to say what we mean and find the words necessary to express ourselves.

We find any means necessary to recruit tools; helpers, muscles, technology, so that we may express ourselves. In many ways, on this journey it is easy to lose your voice. To feel trapped inside. Stuck with no way to be heard.

It is vital to remember when healing that this journey is emotional, physical, and mentally taxing. Not only have we struggled for years while the brain tumor grew, but after surgery we essentially start over with many things often taken for granted. I know amazing women who have relearned to walk, talk, and eat. Wherever you are on your journey, know that you have support. The support of everyone who has also fought this battle. The battle to heal and be heard. It crosses barriers of diagnosis, and age. You can do this! I can do this! We can do this!

We can learn to speak. We can learn to make our voice heard. As my ST says, we can learn to free our voice. May you learn to free your voice. God bless you on your journey.

Cognitive Fatigue

So, your brain can actually short circuit on you.

There is a term "brain fog" used that doesn't totally describe it. I tell my husband, its like I just went stupid. Seriously. I can't think, can't process, can't take in any information. Responses are delayed. Watching Harry Potter tonight the closest I could come is "Stupify!"

Voila! I am now stupid. I do not see this as self deprecating or insulting. I am really stupid.

Cognitive fatigue is created when the brain is so overwhelmed with stimulus and information is slows and even freezes. There is no background program. No cognition. No memory retention. I literally stare at people talking to me and hear a buzz. Additionally you can get electrical pulses through your brain, burning pain, and heat. I have even had mini collapses where my muscle control drops and so do I. These last only short periods of time, but the results are devastating. Trauma patients lose progress.

 

Needless to say, I now nod and smile, a lot. That is OK. I do my best everyday and that is all anyone, even God asks of us. We are asked to give 100% each day. That amount is fluid with our changing abilities. Again, that is ok. Stress just leads to more cognitive fatigue so you breathe, accept, and look for tomorrow.

(In case you wondered I made more than 15 spelling errors in this post with my first edit and multiple grammar errors. This whole thing is not easy.)

Alone

Its so easy to feel alone, isolated, and uninvolved when you struggle with significant health challenges. You may think you are a burden. That your company must be endured rather than enjoyed. I find that this feeling is common when you are sick. Your circle of support is reduced. Your activities are affected. Even your social involvement and enjoyment of previous hobbies and activities is affected.

In trying to cope with this feeling I listened to my heart and reached out today, hoping that someone else may feel recognized, noticed, and important even for a moment. That they might know that someone is thinking of them. That they matter. Instead I am reminded that others are praying for me. Reaching out in small ways, trying not to be a burden.

 Luke22:39-46

And he came out, and went, as he was wont, to the mount of Olives; and his disciples also followed him. And when he was at the place, he said unto them, Pray that ye enter not into temptation. And he was withdrawn from them about a stone’s cast, and kneeled down, and prayed, saying, Father, if thou be willing, remove this cup from me: nevertheless not my will, but thine, be done. And there appeared an angel unto him from heaven, strengthening him. And being in an agony he prayed more earnestly: and his sweat was as it were great drops of blood falling down to the ground. And when he rose up from prayer, and was come to his disciples, he found them sleeping for sorrow, and said unto them, Why sleep ye? rise and pray, lest ye enter into temptation.

We, none of us, is truly alone. Unlike the Savior in the Garden of Gethsemane, all our friends are not wearied and worn. He is there. Christ is ever at our side. Angles wait to offer us solace and peace as we struggle. Loving, supporting, and holding space for our hurts when we are ready to let them go.

He has already paid the price of our loneliness, our isolation, and our pain. The price is paid. We can feel and experience whatever we need and He is still there. Despite anger and insults, He is there. Unconditionally He reaches out to us. We are never alone. He is with us.

If we are able to embrace and own this truth that we have God and His son in our corner, we can get through the bad days. The days when we feel useless or insignificant. He died for us. Each of us. I have come to know that even if it had only been for me, He still would have been on that cross. He would still have prayed in the garden. His love is infinite and reaches me even in the darkness of this experience. When I accept that I am not alone, I can see the light again.

I am not alone. You are not alone. I don't know your circumstances but I understand pain, and I can empathize with you. God is there. He loves us. He desires us to be happy and have joy. I will get there. You can get there. Some days are harder than others, that is ok, its part of the process.

God bless and keep you safe in His arms.

Costuming as Therapy

I haven't talked much about Cosplay and how it relates to recovery from brain surgery, mainly because I am still really limited in my abilities. I still need to rest frequently and have to miss out on activities that mean a lot, simply because I can't handle it. I have had to pass on opportunities to participate in things like the Cancer Walk and activities at children's hospitals because I can't cope yet.

I found Cosplay a short year before my brain surgery. I have always loved theatre costume and make-up design. I took classes for theatre make-up. When I was a child my mom did costuming for a children's theatre as well as helping our local high school drama club with costumes. I often was roped into helping, and I loved it. I have made elaborate costumes for Halloween for years. After having children I added their costumes to my own.

In 2014 I attended my first comic convention. There were adults, in costume, not on Halloween. Who were these people? They were having a blast. I wanted to have fun too. To make a costume and show off what you had done to someone who understood your level of work? Sign me up please!

I had just begun to work on my first costume, the wicked queen from Disney's Snow White. Then the words "You have a large brain tumor, we are rushing you to another hospital for emergency surgery."

That first day I was freaking out. I began to list the things I potentially would never get to do. I would never get to finish my queen, never start on Snow White. I had no idea what my life was going to be like. In that moment of panic I reached out to an online community of peers all involved in Cosplay. I asked for ideas for costumes that I could wear with an awesome and potentially highly visible head scar.

The answers rolled in. That night, after visitors had gone, I developed the initial stages of my cross-gender Punisher and Jubilee from X-Men. In the weeks following my surgery I compiled the individual pieces needed, some were already in my closet and needed only minimal adjustment. Other pieces I found online for low cost.

I had found the ability to make myself into a super hero and an anti-hero. What better analogy for someone going through a life altering surgery and rehabilitation? Cosplay and costuming gave me something to work for. Something to take joy in. A loved one said recently, "It gave you a tie to the future. Something without any expectation or pressure."

This journey has been eventful and challenging but finding something to hold on to is vital. Find hope. Find a cause for the future. Find something that gives you joy.

God bless and keep you.

Rediscovering Faith

 

Immediately following the diagnosis and surgery I had many deeply personal experiences where I knew completely that God was with me and my family. He was directly involved in making my life something more. He wanted my trust and faith in him. As time goes on that feeling can begin to fade, to feel almost dream-like. Did it really happen?

I have been blessed to retain vibrant memories of some of these experiences. They take place in color, as opposed to a disjointed black and white. Even as I recall the events I feel the fullness in my heart as my soul seems to take a deep breath. The truths I feel so firmly in my heart are undeniable. I find myself identifying with Joseph Smith in his explanation of his experiences. "I knew it, and I knew God knew it."

My experiences in no way meet or measure the things that he saw in his first vision when confronted with tangible proof of God and His son Jesus Christ, but I have experienced deep confirmation of definite truths.

1. God lives.
2. He loves us.
3. He is our Father.
4. Jesus lived and died for us.
5. The Atonement is infinite and none of us is outside of His reach.
6. The Priesthood is real.
7. The faithful use of Priesthood power is the expression of Gods love for His children on earth.
8. My family is Eternal.

If God lives and is our Father, he desires for us all that a parent desires for their children, to meet the fullness of their potential. God wants us to be more than we are. Through the Atonement of Jesus Christ we are given the tools to overcome temporal challenges and move beyond to embrace the light and divinity of our souls. Our souls glow brighter than we can believe. Our souls reach out to one another, seeking the connection we had when living with our Heavenly Father. As we embrace our potential and divine nature, we will be given the power and strength to rise above the struggles of our lives, simply to be more than we are alone.

This state is not my final destination; it is simply a tool that can be used to address character flaws and weaknesses. As I meet Gods plan for my life and work to serve Him, the desires of my heart will be met. We do not subjugate our will, we live in such a way as to meet and match Gods will for us. He desires our joy. He desires for us to continue into eternity, not to fade into nothing but to live in glory.

How can I deny these truths as they have become clear to me? I know it, and I know God knows it.



God bless, have a beautiful Sabbath.

Almost Normal

Some mornings I wake up and feel so much like myself that the surgery and tumor are all a big dream, then I move.

Oh... yeah...

That did happen.

It wasn't a dream. It's real. I sat and cuddled with my boys today and realized that they don't see me as different. When I hold them, when they are in my arms, I am just mom.


Constant. Unchanging. Their safe space. A refuge from the challenges and scrapes of childhood.

"Mom, I need a Band-Aid."

"Mom, can I have breakfast?"

"Mom, I wet my bed."

This I can do. In this I can be normal. "It's ok. Yes. We'll take care of it." No pressure to do more or be more than I currently am, and I can do this. I can get up in the morning every day and be there. I can do my stretches, complete my PT and OT exercises, and get a Band-Aid or change a bed with my son.

I can be almost normal. Almost me. Despite everything that has happened and my changed abilities, I am still in here. My words get trapped. It takes ages to do things that are simple, if I can even do them anymore. Despite all that, I still exist and at least to my children, its like nothing is different.

 

 

Whelmed

"If you can be overwhelmed and you can be underwhelmed, do you think you could ever just be whelmed?"

"I think you can in Europe."

Awesome quote that has been going through my head today. There are days where I just feel blah. I say this not to feel sorry for myself but to acknowledge that I'm not always super positive. I have self care things I need to do to help prevent his, but sometimes it is just too much. Sometimes you get up, get through the day, and accept that this is as good as it gets today. Not forever mind you, but this is it today.

I have seen an audiologist and we have both good news and bad news; I may hear again just as before, or I may not.

During extensive testing it has become clear that my outer or external ear is working perfectly. My right ear has better than perfect hearing and is sensitive to many things such as tone and volume. The issue with my hearing is down to two options; either I have lost the fluid of my inner ear and it is impossible to heal this, or I have something pressing upon my nerve cutting off the signals trying to get through to my brain.

The next test involves electrical stimulation of the nerve to assess for pressure and damage. I get to be Uncle Fester and light up the world with my sparkling personality to find out if it is possible to hear on my left side again. I like that the answer is so blunt. Either I get to heal, or I don't. There it is.

Additionally we have also found that my voice issues are related to my brain overcompensating for not having the correct muscles firing when I speak. So, my body in its infinite brilliance, has recruited other neck muscles adding to my fatigue and creating a whispery, breathy non-voice to have any speech ability. I get to daily practice breathing and humming through a straw to help retrain the correct muscles. As I have done this I have regained some ability to laugh for more than one breath and I can sing more smoothly to my boys at night. No more cries of "No, Mom. Use your real voice."

I'm not totally overwhelmed yet, but there is a lot changing. My body continues to heal and I am constantly amazed by the blessing of our bodies. We possess incredible healing and coping power. God bless you.

 

 

Dig Deep

"I ran cross country in high school, and my teammates and I logged countless memories over the miles we ran. One of my most vivid is the sound of our coach yelling at us toward the end of the race, when our legs were leaden and our resolve was waning. His hoarse voice, straining to be heard over the crowd, would shout: “Dig deeeeeeeep! Diiiiiiig deeeeep!!!”

There is some pretty amazing research going in to brain resiliency and our ability to overcome obstacles. Recently I was sent a copy of the following article. It was incredible and said so much better than I am capable of what each of us must do to overcome seemingly insurmountable challenges. Dig Deep

Every day I must dig deep to refocus on what matters. To redirect my thinking to find limited abilities acceptable. I know that God loves me. I know that there is more for me to do. I become frustrated at my inability to do it, until I remember to Dig Deep.

"Cognitive rehabilitation is rarely linear or easy. Some people struggle with anger and loss that undermines their best efforts to get better. But I am often amazed by the creative and graceful ways people reinvent their lives."

 

"If only we could bottle the energy that allows some people to negotiate a new life that is truly satisfying. I cannot promise all my patients that things will turn out as they wish, but I can tell them that the human spirit is amazingly resilient. People can (and do) thrive in the face of devastating loss.

In thinking about how to foster hope, I find myself recalling my high school coach's earnest shouts. Now I think I understand the message he yelled when we were at our weariest: I know you think you have nothing left, but I believe you are capable of more. Switch gears. Be strong. Dig deep."

Story Book Romance

I have had some challenges as I try to function at a level where I can maintain things without constant help. Sometimes I make it, sometimes I don't. On those days I reach for my support, for my husband.

We have struggled as all couples do and have times where we bear one another up. But always he is there. Throughout this trial he has been loving and patient with me, when I could not be. When I was angry with myself for loading the dishwasher with cups and bowls upside down- he said that it was ok, we would rerun them.

Tonight, was the end of  a long day. Campbell's soup and grilled cheese starred as dinner. No complaints just praise. We spent the evening with the boys, cuddled on the couch. It was what I needed to remind me of what matters.

The sink has dishes, toys are still out in some parts of the house, laundry is folded but not put away- this is not what matters. He reminds me "Hey, there are no expectations. Do your best. What do you need tonight? How can I help?" He means it. The other day I made what I considered to be a sarcastic self-deprecating remark, "Hey, that's my wife you're talking about."

He doesn't read what I write- this is my space and he doesn't want me to worry about who is reading. He wants me to be honest and open with myself and the world about what its like to have your voice trapped inside. I never make this much sense in conversation. This is an outlet where I can write, with no pressure. Where I can just be what I am. He loves me. He proves it everyday.

I love the following story, I found it a little while ago and just cried. It is easy to forget that story book romance is just that. Real romance copes with the health and the sickness, poor and rich. It copes with juggling medical bills, changing circumstances, pain, and emotional outbursts. It reassures us that we belong. We are important and that someone has our back.

Impossible Questions

I don't want a fairy tale, I want a grown up love that accepts as you are and also allows for change. Where you both make mistakes but the love doesn't leave. Where you both make an effort to work together.

Fun with Brain Tumors

Despite all brain tumor and recovery support groups being cancelled I found a small group of people who are struggling with meningioma tumors; either as patients or as parents/loved ones of patients. One of the things we do is to make it a game, have fun with it. Yesterday we all spent time writing our own version of a haiku on our experiences.

Haiku is a Japanese form of poetry consisting of syllables and cadence rather than rhyme. They are short and simple, only three lines. The first line has 5 syllables, the second 7, and the third back to 5. The responses were from heartbreaking to hilarious.

K:        It's not over yet;
                      fear won't make me run too far,
                                live life and laugh loud.

S:         Meningioma
                      Oh how I hate to have thee
                                 Please go away now

W:        mysterious one. 
                        manifested destruction. 
                                 courage was your death.

J:           Pestilential guest;
                         Twisting my mind upside down;
                                  Please do not come back.

My newest attempt:

             Lurching with my cane        
                         Breathing, wheezing and double vision
                                    Seeing what matters

Finding ways to have fun is sometimes your only point of solace. Make it a game, be silly, be a child, play. You will find the things that matter most take up the least amount of resources.

Have a wonderful day!

My Love Story

After talking to a dear friend today I began to think of all that has gone on and the many changes and blessings I have experienced.

• Help when needed with no expectation.
• Loving support and acceptance from those closest to me.
• A medical team that is one of the best.
• Keeping my language skills, some have altered but they remain mostly intact.

In thinking over all that has changed I was filled with desire to look at the pictures from my surgery. I stumbled across the following pictures and my heart is filled with gratitude today.