Daily Routine

Preparing more documentation for medical review I sat down, only to find that there are some changes over the last year, but maybe not as many as I like. That doesn't stop me. The world tells us that we are only what we can do, when you can't do much that can feel limiting and discouraging. I challenge you to find what you can do. Focus on where you are going, not where you are at. It is important to be honest about where you are, but focus time effort and energy on where you are going. 

Daily Routine:

           Wake up with family, dress, eat, medications.

           Walk for PT. Rest. Review email and mail. Read.

Eat lunch. School work. Rest.

            Kids home. Husband help with after school reading time. Rest.

            Work with family to make and eat dinner.

            Family time. Read. Bedtime.

That is an average day. I continue to breakup low levels of activity with rest. If fatigue sets in then headaches and loss of neurological control result. I lose the power of speech, become disoriented, distracted, and begin to have tremors. I struggle to keep mood high and level, rest hydration and attention to diet are necessary. I take a daily NSAID to help with the pain but that really makes it bearable. Opiates are not a good choice for me, so I work with Dr. Awesomesauce to keep medications as low as possible to avoid effects. I do keep a small garden to help with depression and physical therapy for fine and gross motor control. I cannot work in the garden daily, but the hopefulness of the flowers helps me to stay involved and engaged with my community.  I had to stop volunteering in my church after surgery and it took me a long time to go back regularly. I am still very restricted in my activities and need the support of my husband to attend. His support allows me to be as involved as I am, he helps me when I stop being able to think or reason. ex. I have spent 45 minutes completing this information. I am in a quiet room, by myself, no distractions and in that short time I have a headache from trying to be clear and cohesive and I will be going to rest so that I can function for lunchtime, when he will check on me to make sure that I am eating. 

I have three calendars in my house and my daily schedule on my phone; medications, meals, and even time when my kids get home from school are all programmed. I struggle with tracking time and this is the only way I have found that I do not miss my self-care.

I journal daily and have prepared a recovery journal based upon daily gratitude on focus on the positive. I adhere to the principles of Steve Bow who said, “God’s gift to you is more talent and ability than you will ever use in one lifetime. Your gift to God is to develop and utilize as much of that talent and ability as you can, in this lifetime.”

I am doing my best. I am doing more than the doctor believed that I could. I can speak in most cases, I can walk, I can hug my kids. I work every day to become someone better for this experience. The stress and strain of having to go through constant medical evaluation brings home how far I have come but illustrates how much farther I still want to go. I balance my day trying to keep everything manageable, the pain, the “dumb” when my reason stops, and even my brain stem functions. That is my day.

Getting Through Bad days

Please understand that the following post is not medical advice. It is not intended to treat or diagnose any issues. This is simply my experience and may offer ideas to discuss with care providers. I am not an expert , nor to I promote myself as such. I am simply a patient doing the best I can to get through a challenge that I never expected to have. 


I sill have some really bad days. Mine are often due to TBI and the depression that can folow significant brain injury. It doesn't work the same as it did before. Things impact me differently now and they are often erratic in their expression, very little in the way of specific triggers can cause them. some days are simply harder than others. Here is how I try to get through those "bad days".

1. Hydrate; dehydration makes existing brain issues worse. This is always my first step as any dehydration is unable to be tolerated by my brain and it starts to not work correctly. 

2. Get outside. Even if it is just my front porch, breathing fresh air helps. I am lucky to live next to some wilderness areas so walking is doable too. 

3. Good food. When is the last time I ate something good for me? I keep fruit and veggies readily available, sugar is good for a moment but the later crash only makes things worse. It can be fun in the moment, but payback is awful.

4. Exercise. If I haven't done it already, a 15 minute walk works wonders. 

5. Pet therapy. I lost my fur baby of 15 years in October and it has been hard ever since. For right now pictures of her and sitting in my garden where she used to sit with me can help ease things. 

6. Reach out. If I am still funky, or at any point in this whole thing I phone a friend. I may also write in my gratitude journal or write about something I am dealing with on my blog. 

I can't skip the hard stuff, it's real and it happened. Giving it space without judgement while also addressing the physical aspects can help me to get through it. I can tell you that knowing it will end helps me to get though to the point where it's a good day. I try to always remember that there are physical aspects to this. People that say things like- "pull yourself out of it" don't understand all the layers that exist. I try to give my brain and body every reason to have a good day. 

This is a good and beautiful life. it is worth living every minute to the fullest, but that doesn't mean I pretend that things don't hurt sometimes. Pain is part of my journey to teach me humility, but it is not worth choosing to live there. I encourage you, if you are struggling, to seek out the resources you need to find the space to continue healing for you. Brain injury plays a role in my life, but this is still my life and I choose what to allow to expand and grow. I choose to live and to continue learning. God is good and blesses me in so many ways. 

Daily Progress

It doesn't happen much anymore. There are rarely the "Aha!" moments where something magically happens and I show measurable progress. It;s hard to think about the things still missing, the parts that are still broken. Today, i had a breakthrough. I don't know if it will last, if this part of me is coming back permanently or if it is a simple fluke. Today I found part of my soul. 

For the first time in over two years, today I was craving music. Like needing music, I used to always have music as part of my life but this crazy tumor made listening to any sounds so painful. We did all sorts of tolerance training and finally today I just felt funky, I couldn't figure it out. (Yes, I have some friends going through some really tough stuff, but that wasn't it.) Right now, and for the past hour I have made dinner while listing to classic rock and folk music. Chicago is playing and all I want to do is sit and cry in relief, it feels so good. I can sway, I can dance in my kitchen, it's like finding a lost piece of my soul. The music touches my heart without the pain that always now seems to be there. This is a gift and I am not ignoring the mercy that this moment is. I don't care if the house is clean, or that everything is ready on time. None of that matters as i spin at my kitchen counter. Not every day is like this, but today I get my music.

Progress still happens, it is slow and you can never stop pushing against the walls of possibility for more, push for more so steadily that there is no other option but that the Universe grants your request. daily practice, daily effort, these things move mountains. These things can retrain the mind, no matter the extent of the injury. 

To Whom it May Concern;

The letter I never sent sits on my desk. I can't do it. I cannot say all that I feel, my anger would overwhelm you. It's not fair to put that on you, but neither is it fair to leave it inside, dwelling and lingering.

Dear person-

While I appreciate your personal pain, please do not assume that you in anyway understand the scope of all that has happened. You haven't taken the time to listen, let alone understand. You assume and perceive my life through your own narrow lens. You make assumption after assumption, imagining that somehow I actually share all my pain. I may write about some of my challenges, more as an expression that they are real, but I in no way dwell on them. My life is made up of more than my injury, of more than my pain and I would much rather amplify the positive aspects of my life. Never fear, I am very aware of the realities, of the pain. Trust me, it never leaves long enough to forget. Please allow me to correct a few of the misconceptions about my life demonstrated in your letter.

"Well, at least you are home..." Factual yes, but this does not encompass the extensive support network that makes me living in my community possible. My husband is sometimes father more than spouse and I feel consistent guilt that I am, as yet, unable to be a full partner in our marriage. Every part of our relationship is a balancing act of my abilities and tolerance levels. My neighbors are aware and available should the unforeseen occur. I have hired help to get me through the days and do simple things like run and play with my children. I am home with oversight, care, and extensive support networks.

"You get to get better..." Yes, but again this is not without extensive support and effort. Every part of my day is weighed and measured. I have made many sacrifices of time and money to do everything I can to heal and improve, those efforts are paying off, but it is not without cost. I exist in a state of pain. That pain can wax and wane with the barometer pressure, dietary changes,  temperature, and even hydration levels. Here's the kicker, I am through less than 1/2 of my lifespan- I will live much of my life struggling with executive function issues, and when it gets bad, even basic bodily functions.

You go on to share your desires, despite what is best for others, with "I want...' Great, so do the rest of us. We all want but all of us must weigh the responsibility of what we want with our capacity. Endangering others for your wants is unacceptable. Period. That's it. You do not get to endanger others for your wants. Wants are not needs.

I love you. I know you are hurting, but I beg you to never assume that you understand the full reality of another persons life. You can share, empathize, and be with them, but you are not them. You can share, but you do not know. As long as you continue to use what you do know to justify your own actions and excuse your wants you will never know. Knowing is placing the needs of others over your own wants. Knowing is moving, even if it hurts, because it will be worth it. Knowing is showing love and hiding pain when it hurts the most because someone else needs the space for a time to grieve themselves. Only by working to really know can we actually see one another as they are, and not as we are.

-Me

A Meaningful Life

When coping with an injury such as TBI that can result in disabilities and other complications, it is easy to become focused on the injury. The more you focus on the event, on what happened, on the impact in every area of your life; it can eclipse other areas of your life. You see, breathe, and live your injury as its impact seeps into the corners of your life. Activity levels, energy, memory, mood are all impacted and make it seem as if your entire life is made up of your injury.

 

It is only as you work to establish areas of your life, apart from your injury, that you find how much of you is still there.  Each additional skill, talent, or interest adds to the complexity and fullness of a life that can be yours. It is not easy, nothing worth doing ever is. With careful and consistent effort you will find that you have a full and meaningful life, in spite of your injury.  

The impacts of the injury are still there, but as you grow and develop; its impact becomes less important. I encourage you to reach out, to stretch, push your limits and test yourself.  Discover a new level of living and being that allows you to live a meaningful existence. Injury is not the end; it is simply a part of your journey.

We each face trials, for some it is more apparent. your injury can serve as a spring board to propel you higher and farther than you ever imagined going. Look on your injury as a chance to take stock, an opportunity to reimagine what and who you can become. You will have pain and grief as you let go of ideas and ideals of what you thought you were, but now is the time to decide who you are and who you will be. You have the power to choose, to decide what you will be. Be patient with yourself and kind with others and you will find more is possible than you imagined.

God bless and keep you.

 

 

 

One Size Doesn't Fit All

It can be so aggravating to try to complete rehabilitation toward employment after a brain injury.

Most assistive services do not have a clear and streamlined system of enrollment. Additionally associated providers mix you into the rest of the population until you tell them otherwise. The system is littered with nuances and subtleties that are generally not explained. Things such as how to obtain access to books, available supports, accessing supports, using key words and specific language. It is all quite difficult to navigate.

On three separate occasions I have had to ask for help regarding the next right step. My case manager has helped so much in pointing me in the right direction. Sadly without that direction I would be lost.

Prior to injury I believed that telling a client what they needed to do next should provide them with the necessary information to move forward. I am finding that this simply is not true.

Not only do I now require verbal communication, I need written follow-up. After I am able to understand what is being asked I have to process through my anxiety and allow for time when I am not physically fatigued.

I was unable to plan for time this week and this blog finds me sitting, waiting in a loud and open office area, for someone to call my name. 

"Can you let them know I have trouble hearing?"

No problem. Before coming down to the office to understand a concept I would formally have thought nothing about, I sent three emails, placed phone calls, and emailed my support team asking for help.

Unfortunately  I am the only one that can sort out what is going on.

When did help become riddled with barriers? Why is it so difficult for others to understand that my limits are not for my comfort, they are necessary. How can I help people to understand that what may be normal or easy for someone else to grasp is beyond my ability to comprehend. Right now, it is asking everything to follow along with what I know I need to do, determining when there is more is beyond me.

The hum of the ventilation system is buzzing in my ears and my scar has already begun to throb. My eyes want to close from the lights despite using my filtered lenses. I have at least another hour to go. I doubt I will be able to accomplish anything more today- I may even just go home to bed. (To help you understand, it is 2:30 in the afternoon.)

 

From all accounts these hiccups and delays in service are normal. What a tragedy.

Many in my recovery team have gone above and beyond traditional care for those with disabilities. I can't imagine trying to cope with all of this without a good support system. I find myself continually surprised and how this tumor and surgery have affected my functioning. Things that I never thought of or even noticed prior to surgery are devastating. How do people do this without a team in place to support them?

While I do have some of the best supports possible, I am still surprised at the lack of understanding or even empathy that enables people to look past you. If you have ever had the thought that you have done enough or helped more than normal, please take the time to think about this person  as an individual. We do not fit into a mold and it can be helpful if you ask for ways to make things easier so that we can participate more fully in life.

Those with disabilities offer a necessary and valuable insight into the world around us. Maybe its time to stop using a "one size fits all" mentality and really take the time to see one another. What changes might you see in your community if you took the time to see everyone as they are, rather than fitting them into a mold? Keep in mind, we are all individuals with valuable insight and contributions. As soon as we try to make it easy on ourselves by thinking that maybe one size fits all is the way to go, think of all that you will miss out on when you stop seeing others for who they are.

(Hey, there goes my double vision. This could be fun.)

Don't Box Me In: Breaking Out of the Disablity Mold

Having a disability offers an interesting perspective of the world. It seems that everyone has a preconceived idea of who you are and what you are about. It can become disheartening and frustrating when you come up against these imposed expectations. People, in general, are not happy to have their pre-conceived ideas challenged. They push back, trying to force who you are and what you are capable of into a box titled everything from "Disabled" to "Un-able".

The belief of "Unable" is a common one. Many people focus on what was lost, what we don't have, what we are perceived to be lacking. The idea that all persons with disability are somehow unable or incapable is just wrong. Many of those who fall into the disability category offer many more abilities. Those abilities can be stronger and function at a different level even than fully well persons.

One example of this is my own hearing loss. After extensive and exhaustive study it has been determined that my hearing will not be able to come back. I am fully deaf on one side. Any one who has been following my writing can tell you that I suffer from hearing so acute that I can experience physical pain in normal social settings. Pain because the volume and tones that I am able to detect are heard at a higher and more intense level than those with normal hearing.  In order to attend events such as watching a movie with my family I take along headphones to muffle the sound enough that I can tolerate sitting with them for the duration of the movie. Despite such precautions, I still hear the movie so acutely that it taps my energy and often leaves me fatigued for hours afterward.

Another example from current media is the idea of Dare Devil. His loss of sight led to an uncanny awareness of everything that he could hear, see, and even touch. This is not to say that all persons with disabilities have overly developed senses in other areas, but each of us has adaptations in other areas where our mind and body have come together to allow us a higher level of living. Higher than if we just wallowed and sank into our disability.

People are comfortable with the predictable. Challenging our own perceptions and paradigms is hard enough, then we venture into the world. Taking our internal fight into society engenders a fight of another kind, the fight to be seen. It is talked about in the disability community the idea of invisibility. We are looked past in the grocery store, eyes skim over us, pretending we are not seen or that the "shame" of our disability is not noticed.

Children are rushed away, not able or encouraged to ask questions and find understanding. Many of us are prepared for and love questions, when we can take the unknown out of the equation, we are seen. Children are incredibly honest, they will call it like it is. This is utterly refreshing. The open and nonjudgmental queries of a child trying to understand why someone looks or sounds different opens the rest of us up to really see one another. I am no longer invisible.

How do I think other people should treat disability? Disability is simply a part of life that we work around or through. It is a corner of who I am, but it is not everything I am. Like having brown hair, it is a physical descriptor, not my identity.

I am not ashamed to use a cane or have trouble hearing on one side. I am not ashamed to stutter, have trouble forming words, or misuse words. I know who I am and where I come from. Those who look past, who don't see, who use the excuse of "I didn't want to offend", they should be ashamed. It is when we stop seeing one another and really listening that problems fester and worsen.

If you really want to look past the label, if you really want to avoid offense, then see me as a person. Don't pretend that I am not there or that I don't exist. Ask me questions out of concern and a desire to understand and then move on. Ask me about the rest of my full life. Ask me about my kids, my dog, my husband. Talk to me about stars and small towns. I can talk about spirituality for hours. I love to go hiking. I paint, I draw. I am not my disability. It is a reality of my life, but it is only one part of my life.

The lessons I have learned through this journey continue to amaze me. I can teach you about having and creating a full life outside of your challenges. I can teach you that bad days don't last, that life is beautiful and worth living. I can teach you about losing everything you thought you were only to discover who you really are.

What I can offer is valid and needed, so I will continue to share and write. I will keep standing up and demanding not to be boxed in by the expectations and preconceptions of others. I will keep demanding to be seen, to shake up the ideas of what you think you know until each of us is seen for who we are, instead of the idea that is most comfortable for someone else. I will keep speaking until those who are considered "Disabled" are no longer seen as unable but valued as members of the same society who can offer valuable and necessary perspective and insight. Let us out of the box, we don't belong here.

Avoidance

Definition of avoidance. 1 obsolete a : an action of emptying, vacating, or clearing away b : outlet. 2 : annulment 1. 3 : an act or practice of avoiding or withdrawing from something.

I am fully engaged in "the act or practice of withdrawing from something." Seriously, once summer hits it is all a game of trying to not fall too much behind. Visits from family and friends, my annual tests and exams, as well as making plans for the next three years, well, it gets really busy. So much has happened and there is a lot to update.

I am a middle aged, disabled college student.

I am enrolled in college. I am working with a vocational rehabilitation program to relearn the skills necessary to hold down a job and support others going through this challenge. I will be attending classes at a local school, mostly online, for the next two years. I am combining these efforts with my rehabilitation to help reduce my time out of the work force and am starting at very basic levels. I am pursuing an education in human resources with an eye toward working within the Americans with Disabilities Act for neuro-nontypical employees; autism and aspergers spectrum, traumatic brain injury, and post traumatic stress disorder.

Understanding and working within the framework of human resources I hope to make employability of disabled persons less intimidating and more accessible. Statistics show that while the disabled struggle with unemployment at much higher levels than the general population, despite capability, they often are model employees. They do not take as many days off of work, show attention to time and produce a good quality of work within the realm of their capabilities. I can use my 10 years of experience in working with disabilities and helping provide support, all while working within the framework needed for my limited capacities. Some skills I do not yet possess and some areas will require more healing and occupational therapy. I am focusing my next two years toward building this resiliency so that I am prepared and ready to contribute again.

Basically, I am making good use of my time to heal and move toward future goals. I am equal parts terrified and excited.

*Short note: My exams and evaluations show that I do have a 6mm residual tumor. It appears to be stable and my providers are not concerned about regrowth. I will have annual assessments to ensure that this does not change. I have follow-up referrals for neurological testing of my auditory nerves. (yay?)

TBI Events

Who knew? With brain tumor awareness month happening now that while the cancer institutes/treatment centers don't have events, the brain injury groups do. Yes! If you are in the area, you may enjoy participating in the 5 K Walk, Run, or Roll. Super excited!

Brain Injury Association

Support Groups

Go Gray for May!

Some Day

Brain tumors become a game of "some day". For many Some day will be surgery. Some day they will have a seizure. Some day they will lose memory or life function.

Numbness. Pain. Disorientation. Fatigue. Double vision. Hearing loss. All these can occur any time in any way for brain tumor patients, benign or cancerous. Surgery is often reserved for those cases where, to not go forward, guarantees death. Radiation and chemotherapy may offer hope and relief for some, but not all cases will benefit.

You could say I was one of the fortunate ones. Instead of years of some day, everything happened so fast that some day was today.

Now my some day consists of creating a life post craniectomy. Some day I will not shake. Some day I will be asked a question and know the answer without thinking about it. Some day I will drive again. Some day I will laugh and run with my children. Some day I will not be in pain.

As you can see, it becomes easy to get lost in some day. I try to focus on today, on now.

It's not always easy.

There are times where holding on to today, this moment, is all I can do. But I hope. I hope for healing, for growth. I hope that none of my loved ones will have to walk this journey.

I respect those that support their family, that hold loved ones when they wake up lost and confused.

Most of all, I respect these warriors. They wake up every morning, never knowing what will happen, knowing that anything is possible, and they choose to live. Every moment they choose life. Past the pain, seizures, anxiety and unknowns they choose to live a life you will know nothing about. (Thank God you don't, this journey is not for the faint of heart.)

They live around you, these warriors. Mothers, grandmothers, fathers and friends. They live quietly. Not making waves. Getting up and living their life, the best way they can. They work and play, laugh and love. Through all this they know how fleeting it all can be. But they still do it, every day, because it is not yet some day and they are here today.

God bless and keep you.

Why May?

Why May for Brain Tumor Awareness? May is flowers and Mothers Day. It is about spring and beauty.

Here are a few things you may not know:

3:1 - yes, this is another example of how being of the feminine gender creates increased chances of certain types of brain tumor. Some are looking at parallels of occurrences of breast cancer and ovarian cancer in addition to meningioma. Many of us hope that there is no connection. Most of all, we pray for a cure. We pray that no family loses another person to brain tumor, of any kind.

Lucky

I feel stuck in a story of hope and loss, grief and healing. Right now things are never just one way. There are bad days but they are balanced out with incredible moments. Snippets that, thanks to the removal of my tumor, I can remember and reflect on. So much I don't control. I begin each week, each day with a plan or an idea of what I would like to do. By lunchtime that plan has usually changed. I know I'm not social. I know that being home is comfortable. I have great friends that draw me out, but it is so easy to slip into patterns of complacency. I think that scares me the most. The moment I stop pushing, I fear that I am lost.

No one knows yet what TBI and brain tumor patients are capable of. Some seem to suffer no ill effects at first but traumas can show up years later after the triggering event. Uninformed doctors and other professionals then continue to build on myths with outdated and ill-informed opinions.

I found myself quite agitated today confronting an opinion, expressed in the news media. Let's just say that the opinion/information expressed was minimizing and demeaning for those like me who struggle daily with recovery. Remove it, recover, no ill effects. This was the basic idea expressed. It's not a big deal. The tumor doesn't cause symptoms. It's benign, you're lucky.

I know I'm lucky, not because the tumor is considered benign, but because I lived.

I lived.

This is my story for the past 11 months.

Someone familiar with the nature of the meningioma tissue but not my tumor would say that there was no harm done. My tumor was not integrated with other tissues. It did not grow out of my neurons, but out of the protective covering of my brain. The tissue was fibrous, thick, and heavy. It was protective, but it still almost killed me.

It surrounded my left cranial nerves, it was crushing my midbrain, it had compressed my cerebellum, displacing the structure and the pressure had caused my frontal lobe to swell dangerously. My tumor had developed a network of vessels and structures to support it. Each vessel had to be cauterized before more tissue could be removed. Carved out one piece at a time because of the integration of my nerves. The supportive structure for my cerebrospinal fluid, CV4, had ben completely compressed. Headaches, my noticeable symptom for the past few years, were likely caused by the pressure buildup of "not enough room".

Something had to give. It was me. I almost lost me.

I am lucky.

I am lucky to have had the surgeon I did. Lucky that the ER doctor didn't assume that since I was a woman I was just overreacting. Lucky that I had family and friends that rallied to support my family in this trial. I am lucky, not because it was benign, but because I still live. Then again, I do believe that luck had little to do with it. God is good. Life is worth living fully. Every moment has beauty if we take the time to see it. Slow down, look around you. The moments are there.

God bless.

Avoid Dis-sing Ability



Many forms of discrimination exist, racism, sexism, even ageism. They all look at the outside description, not the person. Essentially, seeing a category and not the individual. For example I am  white, a female, and in middle age. These facts are true, but they do not make up or measure who I am. There is one category, still in the shadows, little talked about but very much present in our educational and employment centers; ableism. Below, I offer a number of items and articles available to understand other situations, points of view and perspectives.

One woman offers her perspective on this as she lives in the "grey areas". Some days are good, others are not. Living My Life In The Grey Area

Additionally many resources work to make disability law accessible and easily understood by both providers of services and those requiring accommodations. Discrimination and Disability Law

Employers can benefit the community and avoid costly litigation by staying informed of laws and statutes that govern hiring and employment practices. Mighty Works

My realm of disability rests mainly in my challenges with a severe Traumatic Brain Injury. I am not alone. TBI As those with concussive episodes, PTSD, and other causes of neurological trauma heal, it is vital that we been seen as individuals and not placed on a shelf, out of the way, to wait quietly until we fade away. That's not me. It's never been me and it will not ever be me. I am going to push as far as I can to stretch my abilities and see how far the brain really can heal.

All I ask, all anyone really asks, is to be seen as a person, an individual. If you keep that in mind, in all your interactions, to see the humanity, the person, you will do well. When we lose our view of each other as individuals, we lose a part of ourselves and amazing opportunities for increased understanding and growth. 

God bless you. Keep going, keep healing. You can do this!

(You Can) Go Your Own Way

Well, it has happened. Sitting talking about goals and life and education planning post injury I ran into a huge wall of "you can't". Not that I couldn't meet the educational requirements, or that I couldn't perform the functions required. The issue rests on the fact that I can not take and absorb the amount of information required as fast as the program, unmodified, dictates. This timeline is dictated only by the administrators and in no way reflects the educational needs or requirements of the field or national program standards.

In speaking with student services I found I could have accommodations for note taking, for test times. However, as the program is dictated, it automatically eliminates anyone with more disabilities than those mentioned. I can not take the classes other ways. I can not change the amount of course work needed each term (up to 21 credit hours in one semester) by extending the program. When it was pointed out how it could be done, the answer simply was "That's not the way we do it."

I was then directed to look at other options. Options for education in areas with little to no economic value and opportunity for job growth. It was like being shown the door and denied the chance to perform in a way where I can benefit others and be an asset, using my strengths, past experiences, and education.

Currently the school and its program administrators refuse to accommodate my disability. They refuse to think outside the box or even consider options where it has been demonstrated accommodations are possible. "That's not the way we do it."

I am grateful that when in a similar position I possessed the ability to help and meet the needs of my students; whether medical, emotional, or technical. I was given the freedom in my program to train in a way that met the needs of the student and prepared them for their chosen profession, despite any presenting challenges. Working with children in foster care we encouraged individualization and wanted to partner with clients and families in ways that built lasting skills and positive change.

This is who we are. This is who the caretakers and providers are. Not someone who says "That's not the way we do it." Caretakers say, "Let's get it done."

So, to you, you who refuse to look at anything other than "the way we do it", congratulations, I am now completely pissed off.

I had heard of Disability Discrimination, now I have seen its ugly face. Fascinating and discouraging that it is within the field of educating the next generation of our care providers.

How dare you say what I can or can not accomplish? You don't know me. You never will, as long as you refuse to actually work to make things better. Sit in your ivory tower, you will miss out on the beauty of meeting someone outside your perfect world that might actually open you up to seeing others as individuals. Disabled persons are not objects in your way. We are not incapable. If you refuse to accept us as individuals, you will never know what we can be. We know. We know who we are. The ones who choose to see it will be gifted with a world view more open and capable than you will ever let yourself see. I know who I am.

Hold on to your hat, I'm getting it done.

It Figures

You know how people talk about how hard it is to live and function on disability? Yeah, they are not kidding. Here are some things I have learned so far on this little journey of mine.

1. If you look well, you probably don't feel well. I am more likely to put on concealer and makeup on days when I feel and look like garbage. I use a lot of concealer to cover circles under my eyes, blush to add some color to my cheeks, and lots of bronzer. (You can thank my makeup fetish pre-injury for my stores of makeup; lets face it, I couldn't buy it all now.) Please don't punish people for not "looking" disabled.
2. Whatever is hardest for you is the next thing you need to do. Finding the right kind of help is not easy, navigating the phone trees and gate keepers is even harder. Making things hardest for the most vulnerable in our population is just awful. Why must it be so hard to find help? I cant tell you the level of frustration I experience when, despite knowing my issues I am told by someone offering assistance "Well, its really very obvious." No, no its not. Not to me. nothing is obvious to me and to speak to me in such a way simply tells me that you didn't bother to read in my file how it is best to ensure that I need vital information. You forgot about me as an individual and started counting me as a number.
   
3. Prove who you are. Speaking is still hard, remembering basic information and numbers is even harder. Every time I contact any support services I must first prove who I am by reviewing full name, birthdate, address, phone number listed on the account which could be any of our family phones, and so much other information made up of a collection of random life milestones. I have to prewrite my questions so that by the time I am done trying to prove who I am, I can ask and get the right answers to my questions.
4. A person can get lost standing in an open room. This one is way too easy for me to accomplish. I happened for me the other day. I can be standing in one place, know exactly where I am, but if the environment changes, such as adding groups of people, I am lost. Too much to look at. Too much going on. Going out with loved ones is not just about the energy it takes to spend time with someone you care for, its about knowingly putting yourself in a position to be visually and auditorially assaulted. I get the extra bonus of trying to think around these things to attempt to focus in a meaningful way on the other person.
5. I have magical skills of becoming tired just doing nothing. It takes a special talent for becoming overwhelmed to fatigue not doing anything. Only, that's not really true. The problem is that my brain is really trying to do everything. With no filter to ignore some of the distractions out in the world, I am trying to absorb every sight, sound, and stimulus at the same level of intensity. I have no filter. I find I am not surprised when kids get confused, because I do. What we expect of new little people is really unfair to them.
   
6. Even if you walked the same path, you can never fully appreciate someone's journey. Meningioma is the most common form of brain tumor. Not all tumors are created equally, thank goodness! Even if two people share the same type of brain tumor the size, location, age, and impact vary greatly from patient to patient. Listening with empathy to what the other person is telling you becomes vital. Showing concern for who they are and the needs they express is the only way we can really learn and show another person that we care. Additionally accept that if the other person says you don't really understand, guess what? You don't. You can't and neither can I. So set aside your own ego and listen with your heart.

I have been so incredibly blessed with the family and friends that I have. What hope and what joy they bring into my life. I know that God lives. I know He is aware of each of us and the journey we are undertaking. I know that He possesses perfect empathy and love. God bless and keep you in your trials.

Let it Be

So, for you that know me, I love music. All music; Classical, soul, gospel, country, rock, pop, punk, alternative, and even disco. I have spent much of my time, in years past, listening to music, attending concerts, and simply enjoying the way that music reflects emotions and life.

Since surgery, sounds have become incredibly painful. Extra noise, of any kind, is just that, noise. It hurts. I get headaches, become easily overwhelmed and have trouble finding the pure enjoyment that music used to hold for me.  That is, until this week.

The Beatles offer such a simple melody that while overhearing some songs the other day I found I could relax.  I caught myself nodding my head, singing along (off-key), and generally just being in the moment.

So, the simple melody works. What a blessing. Not for everyday, but for now its a place to start. A place to relearn how to take in music and not become encompassed with all the "stuff" going on around me. Tolerances for other music remain low. My next project will be working on Mozart, is the next step forward in relearning to enjoy classical music. I have missed this part of my life.

God Bless and keep you, and "Let it Be".

I Have a Diagnosis!

The answer is Cerebellar Cognitive Affective Disorder, in my brain, with poor information processing and retention. Cerebellar Cognitive Affective Disorder

My personal favorite bits include such information as:


"Impairments of executive function include problems with planning, set-shifting, abstract reasoning, verbal fluency, and working memory, and there is often perseveration, distractibility and inattention."


"Deficits in spatial cognition produce visual–spatial disorganization and impaired visual–spatial memory. Personality changes manifest as blunting of affect or disinhibited and inappropriate behavior. These cognitive impairments result in an overall lowering of intellectual function."



Additionally for some of my dear ones who struggle with being told that symptoms are imagined or there is no reason to have such changes:


"Underdiagnosis may reflect lack of familiarity of this syndrome in the scientific and medical community. The nature and variety of the symptoms may also prove challenging. Levels of depression, anxiety, lack of emotion, and affect deregulation can vary between patients.^"

Treatment methods include Cognitive Behavioral Programs. (I had used a cognitive-behavior program for 10 years in a treatment model prior to my diagnosis.)

"The current treatments for CCAS focus on relieving the symptoms. One treatment is a cognitive-behavioral therapy (CBT) technique that involves making the patient aware of his or hers cognitive problems. For example, many CCAS patients struggle with multitasking. With CBT, the patient would have to be aware of this problem and focus on just one task at a time. This technique is also used to relieve some motor symptoms."



There is no cure. I won't wake one day and magically be better. I, and others like me, fight to recover from our injury and adapt to issues for the rest of our lives. Increased fluidity may follow repeated practice of coping skills and may improve over time. There is nothing that says that all I have is all I will ever have, but the body is limited in how much and how completely it can heal. No one can exactly predict what this is, I intend to push as far as I can go.

NCBI Publications

God bless you.

The Logic of Not

My posts have been full of fear, anxiety, and the unknown in recent days. I am trying to understand a concept that I feel is best put into words because this is not something that I alone struggle with. In my most recent speech therapy sessions, in relearning how to think and apply logic, we have found that I have a difficult time grasping the concept of "Not".

Not is the simple idea that something is not true or is Not a rule. For example, the horse is not in the pasture. For me, recovering from brain injury, this creates immediate panic. If the horse is not in the pasture, where is it? Another person may make the logical step that it is simply not there at this time, but it will return. For me the idea of where it is not is so vast and consuming that I become lost in the universe. I am floating somewhere around the rings of Saturn wondering if the horse is grazing in orbit. I am unable to rule out obvious untruths because this filter no longer exists for me. This is something we learn. I become a child asking, not why but what? If Not, then what?

Not creates infinite questions as I try to grasp what is true. However, with the idea of Not, you cannot answer the question in this way. Not, loses its value when you determine what is. For example, take the same horse and go a step further. If I say the horse is in the barn, I am no longer working within the world of Not, I understand what is.

This is applied through the use of game cards. Using color and number (right and left brain) I am able to determine which card applies to the rule, and which card does not. I can determine if a card is red in color, with a value greater than 4 that it is true. I can also determine if it is false. When that idea is turned on its side, when I have to decide if a color is Not greater than 4 and red in color, my mind panics. Post-trauma, I do not understand. The idea of infinite possibility is terrifying to me. I want things to be concrete, certain, all i's dotted and t's crossed.

When I heard that I did Not have a craniotomy, I needed to understand then, what is. This need to understand is a very real visceral need to grasp a concept beyond myself and what has become known and familiar. I am trying to apply a higher level of logic to a frightening experience. Hearing about a slightly different procedure, I need all my questions answered again. Why? Because in order to control and manage my anxiety, I am trying to answer multiple questions in regards to the new information presented. I cannot make the leaps in logic myself. There is not much information on craniectomy. All I know is what I can find online, and it is not much.

What I can find assures me that it was the right choice and that, considering the pressure on my brain, it made the most sense to leave the flexibility in case of additional trauma. I am left with the whole universe of questions as to what this means now.

So, now what?

Craniectomy, Not Craniotomy

"What do you mean part of my skull is missing?"

So at my appointment today we met with a new nurse practitioner; discovered a vital piece of information.

I did not have a craniotomy, I had a craniectomy. The portion of the skull removed for my surgery and the intense pressure my brain had been under necessitated leaving that portion of the skull off and closing the dura, the lining of the brain,  applying a seal over the top. No mesh, no titanium, nope something called DuraSeal. A synthetic covering that bonds over time with my skeletal tissue. Important information a little more intense than not lifting certain weight or exerting myself. A blow to my head can cause severe trauma and permanent damage. So, that sounds fun. Essentially part of my skull is missing and I am now Cousin Eddie from Christmas Vacation.

I felt like screaming that this was information that would have been useful to me six months ago. So incredibly frustrated that not all information is clear and consistent. We also discovered that I should have been having copies sent, in writing, of updates following appointments. I will not being seeing the first nurse practitioner again; I will see the second. She actually communicates clearly and doesn't blow me off or act like I am inconvenient. I know my advocate, my husband, was much happier following this appointment.

I am breathing while we wait for final results on my scans. We were also not told of a new residual tumor that had grown since my June appointment. The one nurse practitioner had reported that my scan "looks clear". Apparently she didn't bother to read the radiologist report describing the location and measurements of the new tumor. So, again we wait. Six months until my next scan, unless symptoms begin to interfere with my quality of life.

We've got this. Just waiting now. Praying and holding on to one another is where we are. Honestly I prefer the emergency surgery method, no guess work, no waiting. Warriors in our hearts every day! God bless and keep you.

 

DuraSeal

DuraSeal is a synthetic absorbable dural sealant, which can be used to support primary dural closure. As described in the manufacturer's insert, DuraSeal is an US Food and Drug Administration (FDA) approved product that is indicated as an adjunct to sutured dural repair during cranial surgery to provide a watertight closure. More recently, it has received FDA approval for use in spinal surgery. It contains PEG, a non-toxic and biocompatible polymer. When water-soluble functionalized PEG is mixed with trilysine (a small molecule amine with reactive linkages), the solutions combine to form the sealant gel that can be sprayed or layered onto the site of dural repair. The cross-linking of PEG and trilysine molecules creates a 3-dimensional hydrogel structure that gradually hydrolyzes (water gradually degrades the cross-linked bonds in a uniform fashion just like absorbable sutures). According to data provided by the manufacturer, it is cleared from the site in 4-8 weeks, which is enough time to allow healing.

Directions and precautions include its avoidance with other hemostatic agents or sealants and the requirement to achieve adequate hemostasis before its application. The DuraSeal manufacturer's insert also includes “contraindications, warnings, and exclusion criteria” concerning its use. One major warning states, “Do not apply DuraSeal hydrogel to confined bony structures where nerves are present since neural compression may result due to hydrogel swelling. The hydrogel may swell up to 50% of its size in any dimension.” Contraindications to its use include a history of allergy, penetration of an air sinus, renal/hepatic/immune dysfunction, head trauma, and infection; it is also to be avoided with hydrocephalus, a ventricular drain, or lumbar drain.

Speech Pathology

I have had the opportunity to have some pretty neat discussions about speech pathology. What is it? Why do I need it? What do I get from it?

Here is my humble, basic response.

Speech pathology works with everything from the neck up. All my damaged nerves, speech problems, vision and hearing challenges. Most importantly Speech pathology works to help my cognitive function, my thinking. My neurologist does a great job working to keep my brain physically functioning, removing the tumor, tracking growth and recovery. My speech pathologist focuses on how my brain is now working. Helping me to retrain the damaged portion, take breaks before overload, and self monitor my need to rest periods. Speech pathology keeps me functioning.

There are many things that speech has helped me to understand and interpret as I go on this journey. It has worked on my number recognition, time comprehension, sleeplessness, fatigue, compensations, and even my ability to speak. I have written about individual challenges over the past months.

I found today that I have been exceedingly blessed with my provider. He is working to pioneer aids to reteach the brain. He began working first with stroke patients but has adapted many techniques for me. I would love to see a program made accessible for patients. I know many who have had brain surgery and are told that the trauma they have experienced will heal on its own. Maybe, my rapid progress is because he is teaching me to monitor and evaluate my abilities and adjust my activities based on need.

TBI, PTSD, craniotomy, and even "watch and wait" survivors all have impact trauma on different parts of the brain. If given the tools to heal, we can regain much of our lost function. How blessed I am to have a provider who listens to me and hears the things I can't always say. I'm going through brain development of a child, with the cognition of an adult. I am so grateful for this opportunity to learn.

God bless.