A personal journey beginning the day I was rushed from the Emergency Room and admitted to the hospital to be treated for a large brain tumor. Through this life experience I try to share lessons I have learned and my faith in God is a large part of that. Some images can be graphic in nature, dealing with injury and subject matter can be triggering for some readers.
After losing my voice and speech this summer and then needing to relearn to speak correctly, I am now working on voice lessons. With speech therapy this is helping me to learn breath control, integrate relaxation of specific muscle groups, and manage my anxiety. Yes, for me, singing does all that. When not engaged in recruitment of alternate neck muscles, my neck pain and tension are also reduced. The next step is increasing fluidity of speech and word flow. What does that mean? That means the ability of my muscles to work together with my brain to flow over and around words like water without becoming fatigued.
The best way for me to learn necessary muscle and breath control is singing. It offers the side benefit of helping me to cope with invasive and sometimes debilitating tinnitus. So, I sing. Every day I sing. It is not pretty. It is not musical. It is helping.
Each night, I try to tuck my munchkins into bed with a song. We have found that they have definite preferences. Their preferences are very telling and help me see just where my sons are and how I can help to reassure them. Here are their hands-down favorites; much prettier versions any way.
For fun and variety my middle son likes to randomly toss this one into the mix:
The lessons I am learning singing are so much more than just about muscle control. God bless and keep you.
Some days need grumpy cat. If you are unfamiliar with this then let me enlighten you, Grumpy Cat is an actual cat whose owner takes pictures and adds captions of what the cat is thinking. I use grumpy cat on days when nothing else will do. I enjoy his humor and sarcasm.
I stepped outside my comfort zone and finally published the page I have been working towards and thinking about. A page that shows both what I have done, what I hope to do, and who I hope to reach. I have been dancing around this idea for months and working to slowly build my comfort level. Collecting pictures and refining concepts until I can say that I am happy and pleased with the end result. I made my cosplay Facebook page.
BB9 Cosplay is born.
"I believe that every girl has the right to feel empowered. When we focus only on how cute, beautiful, or pretty they are we teach them to limit themselves. To only value what can be seen. Many girls struggle with accepting who they are. They struggle to accept their own power. I believe the power of girls is far reaching and they have more strength than they can believe. I have cosplays that incorporate my surgery scars. I walk with a cane. Every little girl should be encouraged to learn and embrace her own power; either as a hero or princess. We must teach our girls to be the hero of their own lives, and teach our sons to honor and value such girls."
Geek and Proud.
Growing up I had varied interests but never found anything that felt as real to me as cosplay. This combines many of the loves of my life and at the same time minimizes the deficits. More importantly I can express and share my love of things geek while enjoying the time spent with others who love the same things. We embrace the geek in each other and enjoy the sense of freedom that comes from sharing our common experiences. Star Wars, Star Trek, video games, comic book characters, classic and modern heroes and villains. We use play as a way to deal with the real. Fantasy is not to escape but to find more than what is. To accept both the reality and imagine a future of more than what we are now.
I love meeting and taking pictures with kids. My short term memory is not an issue when interactions last only a few minutes. No comprehension is required, no instructions, and rules are based largely on basic social expectations. I can adjust my costume based on the environment and stimulus and if I need to take a break, no pressure. I can use tools to limit environmental stress and am able to reach out to others in similar situations. I use my cane or walker as needed. I can easily limit visual stimulus and my deafness is not an issue in most cases.
My Mission.
"I use costumes and play to serve the children's community of Utah. I have loved costumes and creating costumes for years. Cosplay is a format that I can use to explore that medium and reach kids in all places. There are many expressions of power and strength for todays boys, girls are often left out and sidelined. In many cases media and culture creates an impression that physical appearance is the only measure of a woman's worth.
Raising young men who expect and appreciate women of strength can only help to strengthen our core society. Raising young women who understand and embrace their strength, can only serve to heal and strengthen homes and community. By lifting each other up, we only serve to make the next generation one of love and personal power.
Girls struggle with knowing their place and feeling their own power. Women are stronger than they know. It is about more than physical appearance. Womanhood is about grace, kindness, personal power, and intelligence. Girls today need role models they can look to who show them how to embrace their own strength. Whether this happens through princesses, heroines, or even anti-heroines, there is strength and power that girls can draw on to get though their own individual experiences.
I believe that as women we serve a necessary role in this world, not by covering or hiding our feminine nature, but by embracing all of its aspects. By treasuring what each person has to offer, we serve to strengthen our community and empower the next generation."
Girls are more than pretty. They are pretty powerful!
Feel free to visit and enjoy my cosplay page. BB9 Cosplay
When, in the course of your life, you are given an opportunity to have a second chance, to rewrite your story, to rethink who and what you expect and believe yourself to be, it leaves a sense of being unwilling to settle for the status quo. Talking to a dear friend of mine, we discussed whether this is my life now. She also has health concerns and is frustrated that her primary care doctor is not taking her concerns seriously.
"I refuse to accept that this is my life now; that I will always hurt and this is just the way it is."
I love that. I love that she said that and that her focus is on making a better life. One where she doesn't settle for the easy answers.
I am facing many changes. With my limitations I cannot go back to my career. I cannot offer support and make decisions with enough proficiency to help others the way I did prior to surgery. It is even possible that just prior to surgery the extreme levels of pressure my brain was under from low CSF and the tumor were creating a significant amount of damage. (We are working to find answers now.)
I am unwilling to accept the easy answers. I am on disability, that is a reality I am facing right now. Facing my challenges head on has forced me to really look at where I am. This is not where I am content to stay.
I challenge myself regularly now. It is simple and maybe not what others may consider challenging, but it is mine. My journey. My path. It doesn't have to measure up to any other expectations. I fully own my journey and I am coming to appreciate all that I am learning.
Second chances offer opportunity to drastically change your life path.
I am embracing this change.
I am working to address this in many ways; both personally and in my relationships with others. I refuse to accept the polite and unspoken things that I, in an effort to avoid confrontation, generally avoid. I speak up. I say what is on my mind, and I have little tolerance for taking the easy route.
I am looking at needing a lot of job retraining and rehabilitation. I can accept this. I can look at it as a barrier or as a challenge to be overcome. I am currently working with a vocational rehabilitation councilor. I don't have many options, and all require more healing and some education.
I am refusing to let my relationships just be comfortable. I want no regrets, no unspoken conversations. I want to talk about the hard stuff and find resolution. I am confronting past hurts and healing traumas pushed aside by other concerns.
I am living fully in the moment and embracing all the time I have. I practice yoga, mindfulness, and make every effort to remain emotionally present in my own space. If I have pain, I accept it. Joy, I embrace it.
I am not perfect. I have many flaws that I am aware of and working to change. I am so grateful for this chance. For the opportunity to learn and grow in this way. My days are not easy. The pain is hard; both the emotional and physical pain. I would not wish this path on anyone, but after what I have gone through, I am grateful. I am blessed. With my challenges I am working to get to where I can say, fully and with every intent of my heart,
"I refuse to accept that this is my life now."
I will be better. I will do better. I will live the life I have been granted and leave the world better for my very life. God is good, may He bless and keep you.
I love my family. Sometimes this journey is so close to me and I have become so expert at hiding the effort that I am surprised when they are unaware of how much this tumor and surgery have impacted my life. A loved one recently asked me if I was still in pain? Does my body still physically hurt from the trauma it has gone through. The answer that immediately came to mind, the answer I wanted to give, "Every damn day."
Every day is an effort to get out of bed. Every night is an exercise of faith that I can get up the next morning. Because of the intensity of the pain medication available in most states, I am also at risk for developing dependence, so I try to keep things as low and even as possible. I avoid too much sugar, too much exertion. I eat foods known for reducing inflammation and work to use breathing techniques when it gets really bad. I use Epsom salt baths, hydrate frequently and practice simple techniques like yoga to keep my mind off of the pain and keep moving forward.
On the bad days, the days when nothing works, my mind is so overwhelmed that I fall uncontrollably asleep. I can't get up, my mind shuts down. I sleep and when I wake it's a journey to start moving all over again. But I do. I stretch, put a smile on and greet the day with everything I have. It's all I have. If I stop to think about it I am overwhelmed with the hurt and loss. So, I don't always let myself think about it. I focus on small things, simple things. I move my feet, stretch my arms and start my physical therapy.
I have neck stretches I start with, they hurt like hell. The relief when the muscles are more limber is wonderful. Then it's up and with slow moments get the rest of my body going. I review my plans for the day, I rewrite the day as needed and keep moving. I take breaks, reset and use my shut-down techniques through out the day. I don't think about the pain, I accept it, but it is simply my body telling me that it has gone through a traumatic event.
In quiet moments I am grateful and I sometimes grieve. I think of what could have been, but wasn't. I think of what is and how I will build my life around the accommodations I need to take now. I know I am here for a reason. Every day I find purpose in that. I don't let the pain win, but I listen to it's message.
"Slow down. Take it easy. Rushing won't get you there any faster. Look around. See what matters now."
In the quiet, accepting but not encompassed by the pain, we are gifted with the opportunity to both embrace and learn and also to see past. To look to the future with glory and health. There is another side. One day my body will be healed completely. Muscles repaired, limber, and healthy. Brain fully functioning and engaged. Bone regrown. One day I won't hurt all the time. For now;
"Yeah, I still have pain. Thank you for asking. How are you?"
After 10 years working to help children and families, I can barely function in my own life. I need help to get through even a simplified version of my day. I am blessed in that I have incredible support from loved ones. Neighbors, family and friends all put forth just a little effort to make sure I can make rehab appointments, keep a clean home, and see to the emotional needs of my children.
In this world, and living a half-life, it is so easy to be sidelined, forgotten, and skipped over. Living a life filled with rehabilitation, recovery, and limited activity, you can easily be missed. It is vital that you remember that you are the hero/heroine of your own story. You take back seat to no one. Being unable to do much does not mean that you are stuck doing nothing.
After two very stress filled weeks of testing and evaluation, I did something about it. I reached outside of myself and was able to participate with HEROIC, in making some kids very happy. HEROIC is a group comprised of individuals who pass both a screening and interview process. They design and maintain their own costumes and must pass a review board prior to using their costumes in reaching out to children and family events. No compensation, no money is ever exchanged. They work to represent their character in-line with branding and marketing. They have a code of not doing anything to demean either the character, or the organization.
HEROIC asks for no financial compensation as each person creates a look, passes a review board, and uses that look to make kids smile. This is all done on their own time. They attend conventions and willingly pose with kids and families. They support local library reading events or other local events to promote community, safety, and family. They respond to community requests for children having surgery, staying in the hospital, and annually help with Toys for Tots drives. You can learn more and enjoy some of what they have done by reaching out. HEROIC Inc.
As part of my review process I attended, for a few short hours, a local kids fair. Seeing the excitement, enjoyment, and hearing the laughs of the kids was a balm to my (shut away) soul. I miss helping kids. I miss so much their pleasure when you notice them. Their spontaneity and smiles while with their families. Even the reactions of some adults on seeing much loved characters brought to life brought a smile to my face. It was a joyful experience, made better by associating with others who feel the way that I do. It was all about the kids.
I found that even with the stress and anxiety of the unknown that I am dealing with, I can bring joy to others. I can serve. I cannot do much, but I can do something. Have I Done Any Good?
I am the heroine of my own life, just as you are the hero of yours. Don't let anyone tell you differently. If it is hard to imagine yourself as the hero, be a child's hero, as much as you can be.
Nothing feels better than helping someone else smile, just because you can.
