Remaking the Holidays

This year has led to so many changes in our home. Going through weeks of radiation led to another shift in how we approach our days. With the holiday season approaching, it also became necessary to look at our traditions and consider changing things up.

We must be willing to change where we are now to get where it is we want to go. 

It is not enough to say, "This is what we have always done." That is a poor reason to do anything in life. Break down the day. What things serve you? What things fill your soul? What actually matters to you? And what no longer works? 

If something no longer works for us life, we realized it is ok to look at changes that more accurately reflect who we are now. This can mean changes in who we spend time with, how we spend your time, and even how we celebrate. I used to prepare an extensive meal, decorate elaborately, and even do most of the housekeeping. None of those things work for our family any more.

This year, we are changing most of our holiday meal. We are changing when we have family and friends visit. We are changing our gift giving to reflect where we are now. We are taking away things that pull away from what it is we want to accomplish, while leaving room for those things that matter most. 

We need to have reasonable expectations of ourselves and others. 

As we have shaped how we are approaching the holiday, we also needed to set some reasonable standards that reflect our priorities. It is unreasonable to assume that we are the same each day. It is ok to adapt our expectations to the situation. 

High stimulus environments wear me out much faster as I work through layers of light and sound. We have young children in our fmaily, some events are simply not a good fit for us right now. It is ok to adapt how we interact and what we interact with to reflect who we are. 

No apology. No explaination. No agenda necessary. 

When we are adaptable we can expereince the holidays as we are and instead of meeting the expectations of others, we are able to authentically engage with our world. We are able to do what matters most to us, and enjoy this time for celebration as we are today. 

Moving beyond what was, is encouraging us to try new things together. I couldn't be more excited. 

TBI and the Kitchen

Providing and caring for my family, at even basic levels is very challenging. I used to cook an extensive and well thought out menu. My husband and I, at one time, ran a very complex group home where I cooked daily for 10-12 persons. I also had to organize and complete all shopping. Prior to my craniectomy I had a 5 week, nutritionist approved menu with associated shopping list, divided by store. Now, I'm left to only short and simple recipes.

In talking about this challenge with my sister, I realized that everyone struggles with making dinner and what to make for dinner. There are multiple sites that address this; sending you daily menus for minimal fees, structuring your shopping list, etc.

I have already, for myself, learned to work within mostly what I can do and now make fewer mistakes. Due to the trauma of my surgery and the injury from pressure, I can make only the most basic things and my husband and children help me, every day. I have everything written down and simply restructure it based on day and need.

There are some basic rules to help you get started.

• Cooking for my family is an all day event. I complete prep work throughout the entire day as part of my OT and PT homework.
• I plan very simple meals on days that I have rehab sessions or other external stressors.
• Rest when planned, don't do too much at once.
• You will make mistakes. Mistakes are adventures.
• Always have a backup just in case; cereal or canned soup and sandwiches work great.
• Organize your space. Eliminate or minimize distractions.
• Check ingredients and pull out everything you will need to cook your meal. Put it away when done, this can help you track what step you are at. 
• Break the job up into tasks of no more than 5 steps.
• One task at a time; no more.
• Write it down. This is where I make most mistakes, I lose track and forget or double steps. 

So, there you go. How to cook with a brain injury. Experiment. Have fun. And keep a sense of humor, it helps.

One last tip. Siracha sauce is magical. I have some nerve trauma so many foods taste like children's paste. I enjoy foods based on texture and temperatire. I have some taste sensation, but to really "feel" my food, spice adds a chemical component that I can sense. Sushi is my happy place. 

Changes and Radiation

What a busy few months. My annual review this year showed growth, only instead of growing out, the tumor grew in. In between my cerebellum and brainstem. My appointment with my neurosurgeon lasted about 5 minutes, with a referral to Huntsman Cancer Center being the end result.

We met with the radio-oncologist to discuss my case and were urged to wait no more than 6 months to begin treatment. We chose to begin treatment in early September, it presented the least amount of possible disruption to the family and the kids.

I learned  that there are many types of radiation, some better for certain tumors, others for location. Gamma knife, Proton therapy, IMRT...so many ways to administer what the body needs to destroy the invading cells in order to allow the body do what it does best, heal. My treatment consisted of 30 sessions of IMRT radiation, or six weeks of daily treatment Monday thru Friday. 

It Takes a Village

I had so much help during this process. Rides to treatment, help with my kids, help with meals (we prepared in advance as much as we could). I was able to use a volunteering site to help track and organize information. People could log in and help where able. 

I am so grateful for the small and sometimes not so small ways that people reached out. My family, from out of state came to visit, which was wonderful. I had friends step up on days when my treatment conflicted with times when my kids would get out of school. My husband changed his work schedule to e with me when he could. When he couldn't be there, I had friends step up to help with rides to and from treatment. So much love, so much concern, so much real help.  

Treatment

My appointments were about 30 minutes away, and averaged between 10-15 minutes in length. I got to wear a mask fitted to my face that held me in place and bolted to the table. This helped ensure that the beam was placed exactly where it was needed. 

I had an amazing team of nurses. They offered support, advice, professionalism and friendship when I needed it most. My treartment team has a tradition of giving flowers to one patient each week. There were days that those flowers brightened my day. 

The first two weeks all I noticed was that I didnt want to eat, and that I was tired. I have been working to regain endurance and feeling this level of fatigue was discouraging. I tried to stay focused on the outcome. I was going to heal, fully. My tumor would be broken down my my body and elimintated. My son said that the beam was like a lightsaber, burning the tumor so it would die. His dad and I agreed, that was exactly what it was like. 

The last weeks I became more tired. Early bedtime. Naps. Simple tasks. Low stress. Nutritional changes to support healing. Meditation. We used it all. I tried to give my body every advantage to heal and recover. 

Coping

I used things like turmeric, garlic, ginger, and even pineapple in my diet to help reduce inflammation and support my immune system. I still puffed up as my lymphatic sytem became more stressed. My skin and hair became dry and brittle, but I was blessed to have no hair loss. 

I kept up with low impact movement; short walks helped me to stay connected without placing stress on my system. I read books on healing and recovery. Some people complain that movies like The Secret and authors like Joe Dispenza minimize illness. I disagree, I found their messages to be hopeful. Not as a minimization of illness, but rather an elevation of self. We are stronger than any challenge we will ever face. 

That is empowering to me. Some days I hurt. Some days we all hurt. But each day, I can make something better, even if it is not me. I participate in consistent self care. I engage in intentional acts of creation on a daily basis. I focus on learning more about myself and work to find ways to reach beyond normal limits, because we are all capable of working beyond normal limits. 

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.

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. 

An open letter to all Senators and State representatives

Dear Senator;

I see today that protections for pre-existing conditions do not yet exist. This saddens me, I am dealing with a brain tumor that rests next to my brain stem, I am also dealing with a dear friend who has had a brain tumor spread.

I want to tell you about him, he is a man of faith and family. He has lived a clean life, is raising three beautiful children with his wife and makes every effort to live ethically and morally well. He doesn't believe in sitting back and waiting for life to happen. He has worked for years in community programs and attended law school while coping with this medical challenge. Yesterday he was taken in for surgery to attempt to remove a tumor that was impacting his speech.

I look at what his family is going through and I know it is not the only story like this. Like me, he does not expect a handout or to take from others. What we do need is a fair chance, to not be taken advantage of, to be treated as individuals worth being protected. We have value and that value is one that teaches compassion and ethical treatment of all individuals. We pay into health care programs and work to our best abilities to make contributions to the community and our families. Through no fault of our own, we have faced a brain tumor diagnosis, no lifestyle choice led to our condition. We don't ask for a handout, all we ask is a chance.

Please, don't make surviving and thriving through a medical crisis a liability. Don't take away protections that would allow insurance companies to prey upon the weak again. Many say it will not happen, sadly this is not true, it already has happened, many times before the ACA. Social media sites are flooded with requests for financial aid and support to help pay for medical costs or claims denied by insurance carriers.

Those of us who fight tumors and cancer are every day warriors. As voices of different experience we offer tremendous value to the world around us. We know what it is to face losing everything. We know the value of the simple and the meek. We know and understand the impact of pain and what it can teach us. We also know the joy of hope and rising through crisis. I think the world needs more hope and not less. We need more triumph in the face of adversity and more grace under pressure. Please protect us from those who would prey upon our times of weakness. Let me continue to be a warrior and fight for my family and the families and lives of those like me. We deserve a fair shot at life, but only you can help us to protect it. We need your help.

May God bless you.

Dear Senator,

Dear Senator,

While I appreciate your written response to my most recent letter, I do not believe that a conflict exists between protecting what are considered "pre-existing conditions" with the new healthcare plan and working to replace those parts of the plan that are controversial, such as the mandate for coverage. I never thought that as a brain tumor survivor I would see my survival as a financial liability to my family. The toll it has already taken on my family can be seen in my children's needs and fears as my oldest son, who is 8, asks me before bedtime not to die. I lived a careful and healthy life. I do not engage in risk-taking behaviors; behaviors such as choosing to smoke, drunk driving, and drug use. No one has proposed using those as a measure of health predictors, rather than circumstances outside of individual control.

My focus needs to be on continuing to heal, caring for my family, and preparing to be able to work full-time again. It should not be on working to live, which current proposals would necessitate. Some estimates propose that my yearly healthcare premium would cost more than my entire brain surgery and hospital stay. This premium would not even mean that all coverage is met, it simply means I would have "access" to healthcare. For transparency my brain surgery and hospital stay were approximately $55,000. With my medications, therapies, and follow-up care I pay, out of pocket, a few thousand dollars per year.

I beg you, let survivors continue to thrive. Let us triumph and move forward to live and grow and contribute. I am doing everything in my power to show my children what living really is. Living is moving beyond challenges, continuing to grow and thrive. All I ask is a fair shot, let me live without fear that some insurance agency will decide at a later time that my life is a liability, that resiliency and determination mean nothing. Let me continue to live my life, on a level playing field.

Respectfully,
Making Lemonaid

To my surgeon

Dr. [AwesomeSauce];

In May of 2015 you treated me for a cerebellum based meningioma tumor.  You saved my life.  I wanted to thank you for your time, attention, and professionalism in ensuring my ability to live and function on any level.

The past two years have been a journey of ups and downs as I confront limitations, face social stigma, and learn to cope with continued challenges.  One challenge that exacerbated the others is that of being able to seek and find appropriate aftercare and support.  I wrote your office in early 2016 and expressed my dissatisfaction with the follow-up care and communication received from one of your associated nurse practitioners, [hewhoshallnotbenamed].  I was put into contact with [clearandconcise] and have appreciated her candor and clarity.  The difference in care is both startling and disheartening when the two experiences are contrasted.  [clearandconcise]  is exceptional both in her knowledge and in her clear communication.  While I struggle with comprehension, my husband was able to understand what [clearandconcise]  explained, even though it varied greatly from what [hewhoshallnotbenamed]  had communicated with us at initial follow-up appointments.

Through many appointments and working with an exceptional team of professionals at [myhomeawayfromhome], I have been able to adapt to functioning at a basic and simplified level.  I am working with vocational rehabilitation to recover professionally, and with a team of specialists to recover functionally.  I have progressed through physical therapy and occupational therapy and can physically function in most of my daily life.  I continue to work with speech pathology to recover cognitive function and the layered reasoning necessary for higher levels of interaction.  I have adapted to being completely deaf on my left side and have learned to understand the origins and nature of my continued tinnitus.  I am encouraged by assessments and support from [sweetestmanintheworld], the neuropsychologist that you referred me to see.

Over this journey I have found many things; 1. A qualified and experienced neurosurgeon is absolutely vital, 2. Goals and consistent, sustained effort by the patient are necessary, and 3. Recovery is best done with a team of experienced and supportive professionals who help to identify and maintain optimum recovery.  I find that many do not experience adequate recovery services and am concerned that while focused on the surgery itself, access to such services is not utilized as effectively as it can be.  Recovery is based upon two standards; physical recovery from surgery, and then functional recovery with any associated limits and challenges of having a brain injury.  It is this second level of recovery that is currently being underserved.

I am asking for your help in educating and sharing with the medical profession that what is being experienced by patients as “normal” is far below the best interests of the patient.  Simple solutions such as appropriate patient education regarding follow-up care of functional challenges, and monitoring of that care by supervising doctors is lacking.  I understand my case is extreme, that it is not common practice for surgeons to be found through the emergency room and that most patients are referred by other professionals.  What I continue to see from the patient perspective is that the trend to disregard or ignore functional healing is common for those doctors as well.  I am privileged to associate with a variety of patients from across the world, many of whom repeatedly express feelings of abandonment, loss, and disillusionment from their initial providers.  They stop seeking help or searching for answers, leading to a decrease in quality of life and fear of follow-up care and procedures.

My surgery and recovery are a pivotal miracle in my life. Your role as my neurosurgeon remains one of my greatest blessings, my healthcare team is another.  I believe without either of those two components I would not be looking forward to a life of decent quality.  I grieve for patients who express that they avoid appointments because they fear being ignored, dismissed, or hearing of another procedure.  None of these options is ideal and all result in decreased outcomes for brain tumor patients.  The question remains, how do we solve this?

I believe that as patients and providers work cooperatively and engage in open dialogue we can improve outcomes for patients, increase functionality post-treatment, and help both patient and provider engage fully in regaining optimum quality of life.  I ask your help in educating providers on providing follow-up supportive care, and creating a team based approach to functional recovery.  I am not sure of the proper format for this type of conversation, in the social work field I would advocate for presenting at local conferences and meetings of professionals.  Maybe the answer, in this case, is to begin one office at a time.  I propose a three-fold solution.

1.       Patients are provided reviewed and approved information regarding aftercare and recovery, to be given at various points along the healing path such as 14 days, three months, six months, and annually as needed.  Correct information helps answer questions that arise after appointments are concluded and gives patients something tangible to hold on to.

2.       Patients are provided access to and information about recovery supports such as speech pathologists, occupational therapists, audiologists, and physical therapists at their 14 day follow-up appointment. It is very easy to compile information of local providers and provide such information to patients to use as needed.  Patients often do not know what questions to ask or what is even possible; by offering the information providers demonstrate patient concern.

3.       At the earliest opportunity, providers and patients must identify a contact professional who will co-ordinate all care and ensure that the patient receives timely responses for any medication and follow-up care concerns.  This provider receives release of information for all reports and appointments so as to ensure that the patient is maintaining a positive healing trajectory.  This works to allow specialty providers to do what they do best and leaves general providers all the tools that they require to adequately do their job, improving outcomes for both patients and providers.

The changes I have outlined are simple and easy to maintain, taking no more time for providers and helping patients avoid medical burnout, improving outcomes for everyone.  Thank you for your care, for my life, and for taking care of people like me.

Absenteeism

Yes, I have been taking a sabbatical. No, I have not dropped off the face of the earth. Yes, I am still participating in rehab and working as much as I can on my Vocational Rehabilitation plan.

I am taking a few classes to help move me back toward being employable- math and English. I spent much of the summer going over basic arithmetic and was able to test into a high school algebra class- so much harder than you might imagine. I am holding my own. With a lot of review and practice I am holding on to a C- This is not easy considering that after surgery I had to relearn the names of three dimensional shapes and how to recognize the symbols of numbers.

My English class I love, but I have found that I have strong opinions and have no fear in sharing them. If someone is wrong, they are wrong. Another classmate was spouting off online about gaming, girls, and sexual biases. I kind of tore him up. I called out each of his arguments and explained in detail how they were not based on fact but only on a narrow perspective that he was in no way interested in expanding. I then offered to help him learn how and when he could broaden his perspective instead of sitting, entrenched, in his biases. My offer has not yet been taken up.

Yes, all my work is online, I can't handle the stress of physical classes. I do have an elaborate IEP and I have to have proctored exams. On my math midterm I got an 83%. That has never happened in my entire life. My left brain seems to be able to learn information better than it has in years, it just takes me an incredibly long period of time.

During all of this I also got to cope with the special problem of developing a tolerance for a medication- meaning that my dosage was creating side effects. Withdrawing from this med is compared to weaning off of drugs- not the funnest thing I have ever done. I will be glad when this part is over. This means that my brain and system are learning to cope with additional stress and strain without pharmacological help. I am treading water and making baby steps forward. The plan is to still be able to function as fully as possible. I will get there, why, because I am too stubborn to do anything else. A half life is not enough. Until then I do my best, I love my boys, and I count my blessings everyday.

System Fail

Learning to navigate this new world, the world of can't and have-to, can be both overwhelming and discouraging. It is especially frustrating when the very systems set up to help those with disabilities actually serve to impede progress. We, who spend so much time overcoming limitations, must go out of our way to explain and review those same limitation to prove that we need assistance in healing and overcoming challenges. I had to request some documents from my Social Security case because of a mix-up with paperwork. Due to the nature of the paperwork it was necessary for me to request the documents from my local office.

Sitting in the Social Security office felt so completely different from my other interactions through phone calls and online support. Petitioners collect into a large room just off of a hallway, an armed security guard at the front of the room. We take a number and sit in chairs, watching a screen as we wait for our number to be called. We sit with stacks of paper, some crying, all tense, and wait. Sitting there it feels like the very hope in your cells is being drained away and you are left a husk, a shell, empty of all vitality.

After everything vital has been drained from you, you wait some more. Sadly my wait was not considered long compared to what others have done. Your number is called and you are directed down a long hallway of glassed booths. High walls, squeaking chairs, and hard floors reminiscent of a school cafeteria create a hallway of pain. Petitioners speak through small round holes into the windows, at the workers inside.

Separated from each other and restricted from any meaningful connections, the workers provide documents and pens to complete forms. You can hear muffled cries, scuffles, and whimpers around you. There is nothing to absorb the sounds of grief and pain, no softening, no contact with one another. For me, the sounds ricochet and build, making my sound sensitivity unbearable. My husband has to help me fill out the simple request form. My worker leaves me to complete the form and returns when I am done.

I am told that records, though stored through this location, are not accessible at this time and I will receive a response in the mail in a few weeks.

I do receive a response, there is a $44 fee to retrieve the records before I can have them sent on to a third party, like my medical provider. I am not allowed to directly receive a copy of the report, I am the patient, not a medical provider.

More than 8 weeks from my initial petition and there is no sign that the records have shown up at my providers office. So, we wait.

How much time to petitioners spend in limbo trying to understand the status of their case? Trying to access help? Trying to find ways to cope with life altering situations?

I am blessed. I have wonderful medical providers who help me to navigate this world. My case manager through Social Security has been both helpful and concerned for my recovery. I am stuck on the level of demoralization that came from sitting in an office, making a records request that could not be done over the phone or by mail. I pray that I never have to return to the office. It feels horrible. I cant imagine the effort to get up each day and go into that office by the workers. I was never treated unkindly, but the very nature of the sterile environment and an armed guard greeting the disabled and inform as they complete requests for information is demoralizing. There has to be a better way to greet those most in need. We can do better, don't you think?

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.

Pajama Day

So, had my audiology follow-up today. Or not. Since my doctor did not make the proper recommendation we did not have the necessary equipment in office to do the tests today. Got some real input and advice however. I was clearly informed that waiting does nothing for hearing loss if the cause is not cranial swelling. Because mine is not caused by cranial swelling I  get to return to the hospital for more evaluations.

My husband is really struggling because at my 4 month follow-up we brought up my hearing loss and it was dismissed out of hand. "I don't know why you would have that." No evaluation, no recommendations, no follow-through. Today we found out that time is our enemy if the nerve is functional. The longer I go not hearing, the harder it will be to relearn. We also began talking about the possibility of needing a second surgery for a cochlear implant. (God, I don't know how to do this.)

I hadn't considered it before but I really want that PA to not ever interact with a patient again. Mixing up paperwork, dismissing symptoms, and not following through on files and documentation- these are big problems when you talk about peoples lives. I'm so tired of trying to heal and then to feel this angry again is really hard. I have no way to express it. No way to feel or show it. The people around me have been through so much, breaking down and sobbing is just too much.

I declare today a pajama day. I'm going to go eat my feelings; chocolate, must have chocolate.

 

What Makes a Champion

Every person struggles with challenges. These challenges divert, dissuade, and detract from the goals and life we work to create for ourselves. You choose the level to which your challenges either pull you back, or propel you forward. An arrow cannot work without being drawn back. this may seem like a loss or lack of progress. For the arrow, it is part of the journey, propelling it forward, driving it toward its goal.

I find myself encouraged by videos and pictures that show challenge and triumph. Please enjoy. Yes, its a commercial- I don't care its a great story.

Additionally I find myself loving the following movie about the beauty of triumph in the face of challenge. Butterfly Circus.

Nic Vijicic is a motivational speaker and advocate. I find myself more inspired today with his perspective and voice. I am so grateful that there are people like this in life that teach me to reach, to strive and to finally glory in reaching my goals.

God bless and keep you in His arms.

Being Whole

I find that in many ways the body and brain and surprisingly resilient. Many challenges and limitations can and are overcome on a daily basis. You hear stories of the body repairing and healing itself, without medical intervention. Doing what it needs to do to grow, function, and thrive.

I learn so much each time I attend my rehabilitation/therapy sessions. I learn ways to stay healthy, trigger healing body responses, and diffuse stress. Learning a whole body approach after injury is vital in maintaining resiliency and continuing to have hope. Keeping a positive outlook and having hope helps both my brain and body in the healing process. Many chemicals and hormones contribute to this healing in recovery.

The brain and body require hormones and chemicals in order to perform primary functions. One of these vital components is the hormone dopamine. Dopamine is essential in the body performing at its most basic and healthy levels. Dopamine. The body produces dopamine and is able to use it in healthy brain and body function.

Dopamine production in the brain is a singular chemical because there is not only one way for it to be produced/developed. Dopamine production is possible using a variety of triggering mechanisms. The triggers of dopamine may be related to accomplishment, health and fitness, sensory experiences, and even study and discovery. For a complete and whole body approach it is best to have multiple tools at your disposal to trigger dopamine production.

Examples of triggers for dopamine production may include exercise and sleep as part of the health/body triggers for dopamine production. Lack of sleep, on the other hand, leads to lower and decreased levels of dopamine production. In the short term this can be augmented by increased triggers in other areas, over the long term it can lead to chronic stress and disease in the body. 

For me, a regular and planned approach to triggering healthy dopamine production offers the most benefit.

• Accomplishment/Achievement may include such triggers as check lists, small steps toward larger goals, screen games such as Candy Crush, and even tracking days of a particular accomplishment. A friend of mine has a kitchen chart where she tracks numbers of days her kitchen has been cleaned each night. How can you track your accomplishments? What steps can you take, or are you already taking, that help you to trigger a sense of achievement?
• Health and Fitness are triggered by exercise, defined as 20-30 minutes per day of exertion. Sleep is also a producer of dopamine production. This requires healthy sleep, in the range of at least 7-8 hours per night. This amount may increase based upon personal need. For example last year, just after surgery I slept for approximately 16-18 hours per day. I still require extra sleep in the range of 12-13 hours per day.
• Sensory Experience includes such triggers as enjoyable foods (comfort food), listening to pleasing music, pleasant textures, or pleasurable emotions. With my decrease in taste and smell I no longer desire the flavor of ice cream but the temperature creates a chill and calms and cools my brain. A brain freeze can actually serve to offer pain relief from the heat of summer. Who knew? So, I don't care for the taste but the temperature is a relief and can serve as a trigger for dopamine production.
• Study and Discovery serve to release dopamine through meditation, prayer, mindfulness, creative pursuits such as writing, drawing, painting. Exploration of self and the world around us can act to help us both stay engaged with others and ourselves. Fascinating to learn that as I work to document my experiences in recovery I am actually working to create a prime environment for healing and healthy function. Amazing.

The more I learn in recovery both about my condition and the systems put in place by the body to compensate and heal from them, well, the more hope I have for a more complete recovery for myself and others. As we learn what the body and brain are capable of we can learn ways to trigger the necessary responses and offer hope for traumatic brain injury, brain tumor recovery, and even mental illness treatment.

God is good and I feel and see so much how His small mercies have served to create an environment perfect for my healing. I am making progress past the point of previous expectation. The mind and body are capable of more than we know. What and incredible miracle and blessing.

God bless and keep you.

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?)

Today

 

Some days I am here, here where I sit.
Locked in this place, taking up mass.
I can't move forward. I'm unable to do. 
I float and exist on the surface at most.
I try to get through it, I try to find hope.

Today, is a hard day. Today, I am grieving. 

Fears build up in my heart and I cry heavy tears.
I miss my before. My before all of this. 
Before all this happened I ran and I did.
Before I was busy. I rushed and I hurried.
Trampled and hassled, feeling quite scurried.

Today, is a hard day. Today, I am grieving. 

Not doing much, no progress to show.
No project or busy work measuring time.
Just this existence here, locked in my mind.
Not real. Out of touch. I can't grasp my life.
I lose the connections of people and time.

Today, is a hard day. Today, I am grieving. 

It is easy to feel shut out. I am here but not engaged.
Present and yet out of step.
So much in my mind, it's hard to live in this body.
I feel like I'm floating. Not connected, not real.
The sorrow wells up and it's all I can feel.

Today, is a hard day. Today, I am grieving. 


I'm grateful, I am, don't get me wrong.
I know I am blessed, that others cry too.
Today I am here, in this space, how are you?
Tell me your stories, your dreams and your fears.
Let me know I'm not alone when it's my time for tears. 

Today, is a hard day. Today, I am grieving. 

Just please be my friend.
Let me laugh. Let me cry.
And when I'm discouraged give me reasons to try.
I'll get there. I will. I'll do it all one day.
That day is not now, that is not today.

Today I am grieving, and that is ok.

Birthdays and Milestones

Exciting things. Coming up on my one year Craniversary, graduating from physical therapy, and now having a birthday that I once feared I would never see. It's a turning point. I'm relearning how to drive and practicing in the neighborhood. I have accepted that I will use a walking device for physical protection for the rest of my life, and am moving on to nicer canes than my pharmacy version. Progress is still slow and difficult but I am slowly able to do more each month. I am getting there, now I just need to figure out where "there" is.

God bless and keep you!

More New Updates for Brain Tumor Awareness Month

Exciting things continue to occur as Go Gray for May reaches its middle. New research and breakthroughs are being posted and it is reaching out to the most violent and aggressive forms of tumor, in ways that are minimally invasive. I am so excited for those who suffer from these even more aggressive forms of tumor and cancer.

Newly released information shares a way to treat glioblastoma and it is working. Increased clinical trials are the next step. Medscape: Glioblastoma and Virus Vaccines

Support groups also offer hope as this is the biggest indicator of long term quality of life for survivors.

Brain Trust Support

Brain Cancer Support

God bless you! You've got this.

WHO?!?

The World Health Organization just published a paper that will greatly impact the treatment of brain tumors and other central nervous system tumors. This is huge. The classification systems used currently affects how treatment is done and what options are open to patients. Despite differences in cellular construction of the tumor, many tumors may have been previously classified the same. With all the new research and studies being done I am so excited at this change. This opens the door to more focused treatments and options.

Amazing. Way to go WHO!

Central Nervous System Classifications

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!