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.

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!

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.

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.

Baby Steps

One foot in front of the other.

Sometimes that is all it takes and all you can do. Keep things simple and move forward as you can. I have found that the journey of life is not won by big events, but by small daily choices. It is these seemingly small decisions and choices that shape our life and character. I am sometimes amazed at what can be accomplished by staying centered on your goals and making small efforts, on a regular basis. You can and will achieve more than someone making a big push or effort in the moment.

Each day I choose. I choose to get up, move, and do. I am and can be an influence in my family and neighborhood. I can't do everything but I can do something.

You can choose to move forward by making small daily choices.

Many set goals at the beginning of the year and push for a short time to meet them. Then, tired, they burn out. Making change is not about doing it all at once, that is too much physically and emotionally. We are tied to our habits and behaviors, they developed because on some level it worked for us. You cannot just decide to cut away part of yourself. There is a process of letting go. With my surgery I did not go through this process prior to having my tumor removed, but I did emotionally go through the grieving process later.

No one escapes the grieving process. Giving yourself time to recover and regroup can be a necessary part of change, as long as you hold to the truth that you are only regrouping and you will re-engage.
Retreat, Recover, Re-engage

Baby steps forward are doable.

I have begun by making big goals and decisions about what I want my life to be. I know some things will have to happen. I will have to relearn to drive. I will have to go through job retraining. I will have to relearn how to cook, work, and live with noise and stimulus.

I work to break these down. I have big goals and break them down into small mile-stones achievable each month. (Sometimes the timelines need to be adjusted based on progress or lack of progress.) I them break the month down into weeks and finally individual days. Activities with the same level of involvement/intensity are balanced out by smaller and simpler activities. Rest periods are used regularly, helping prevent over work and shutting down.

I keep a yearly calendar. On my desk is a monthly calendar where I track my monthly goals. On my wall is a daily calendar where I write my planned/hoped activities for each day. Included on this are my menu, rehabilitation appointments, and housekeeping needs. (Sound like a lot?)

At this point my individual planned activities are quite simple. For example; today I will work on visual tracking during my walk and physical therapy, I will practice using the iron to make a straight line, and I will work to follow a new 4 step recipe to make dinner. While engaging in these activities I will work to maintain quiet levels of soothing background sounds, increasing my tolerance for auditory stimulus. At any point where I feel increased anxiety, I will rest, reduce noise, and recover. I will then choose to get up and continue where I left off.

Through small steps I will meet my goals. I plan to live my life and engage fully in my family and community. Nothing is stopping me but me, and I can learn to work around that too.

Make goals! Move forward. Even if they are baby steps, keep going in the direction you want to be and you will get there. God bless and keep you.

Singing Lessons

After losing my voice and speech this summer and then needing to relearn to speak correctly, I am now working on voice lessons. With speech therapy this is helping me to learn breath control, integrate relaxation of specific muscle groups, and manage my anxiety. Yes, for me, singing does all that. When not engaged in recruitment of alternate neck muscles, my neck pain and tension are also reduced. The next step is increasing fluidity of speech and word flow. What does that mean? That means the ability of my muscles to work together with my brain to flow over and around words like water without becoming fatigued.

The best way for me to learn necessary muscle and breath control is singing. It offers the side benefit of helping me to cope with invasive and sometimes debilitating tinnitus. So, I sing. Every day I sing. It is not pretty. It is not musical. It is helping.

Each night, I try to tuck my munchkins into bed with a song. We have found that they have definite preferences. Their preferences are very telling and help me see just where my sons are and how I can help to reassure them. Here are their hands-down favorites; much prettier versions any way.

 

 

For fun and variety my middle son likes to randomly toss this one into the mix:

The lessons I am learning singing are so much more than just about muscle control. God bless and keep you.

Second Chances

When, in the course of your life, you are given an opportunity to have a second chance, to rewrite your story, to rethink who and what you expect and believe yourself to be, it leaves a sense of being unwilling to settle for the status quo. Talking to a dear friend of mine, we discussed whether this is my life now. She also has health concerns and is frustrated that her primary care doctor is not taking her concerns seriously.

"I refuse to accept that this is my life now; that I will always hurt and this is just the way it is."

I love that. I love that she said that and that her focus is on making a better life. One where she doesn't settle for the easy answers.

 

I am facing many changes. With my limitations I cannot go back to my career. I cannot offer support and make decisions with enough proficiency to help others the way I did prior to surgery. It is even possible that just prior to surgery the extreme levels of pressure my brain was under from low CSF and the tumor were creating a significant amount of damage. (We are working to find answers now.)

I am unwilling to accept the easy answers. I am on disability, that is a reality I am facing right now. Facing my challenges head on has forced me to really look at where I am. This is not where I am content to stay.

I challenge myself regularly now. It is simple and maybe not what others may consider challenging, but it is mine. My journey. My path. It doesn't have to measure up to any other expectations. I fully own my journey and I am coming to appreciate all that I am learning.

Second chances offer opportunity to drastically change your life path.

I am embracing this change.

I am working to address this in many ways; both personally and in my relationships with others. I refuse to accept the polite and unspoken things that I, in an effort to avoid confrontation, generally avoid. I speak up. I say what is on my mind, and I have little tolerance for taking the easy route.

I am looking at needing a lot of job retraining and rehabilitation. I can accept this. I can look at it as a barrier or as a challenge to be overcome. I am currently working with a vocational rehabilitation councilor. I don't have many options, and all require more healing and some education.

I am refusing to let my relationships just be comfortable. I want no regrets, no unspoken conversations. I want to talk about the hard stuff and find resolution. I am confronting past hurts and healing traumas pushed aside by other concerns.

I am living fully in the moment and embracing all the time I have. I practice yoga, mindfulness, and make every effort to remain emotionally present in my own space. If I have pain, I accept it. Joy, I embrace it.

I am not perfect. I have many flaws that I am aware of and working to change. I am so grateful for this chance. For the opportunity to learn and grow in this way. My days are not easy. The pain is hard; both the emotional and physical pain. I would not wish this path on anyone, but after what I have gone through, I am grateful. I am blessed. With my challenges I am working to get to where I can say, fully and with every intent of my heart,

"I refuse to accept that this is my life now."

I will be better. I will do better. I will live the life I have been granted and leave the world better for my very life. God is good, may He bless and keep you.

Mommy is Broken

I am not on this journey alone. I have an incredible support team, great friends, wonderful extended family. The ones on this journey, spending long amounts of time each day, are my children. Three little ones, two not yet in school. They know I am different. I haven't been able to pick them up, carry them, rough house with them, or drive them places...so much is different.

"No, mom, use your old voice."

                                 "Mom, can you chase me?"

                                                                          "Pick me up, please."

When they walk with me my children have to go slow, I use my cane and for safety slow is best. A fall could severely damage me. They sometimes grow impatient or ask if I can run with them, I can't. I have been able to find afternoon help so that their lives are not limited by me, but I know that as I watch them play, how much I miss being able to play with them. It breaks my heart to know that if they fall asleep on the couch there is no sweet walk to their room in my arms.

Some days are better than others and I find myself able to connect and share with them. I often wonder how many other parents struggle with young children and post surgery trauma. Here are my guidelines.

1. Focus on what is the same. I can still hold and rock my boys, the only difference is that they need to climb into my lap. I have found that with some accommodations, many of the things that we enjoy are possible. I cannot play video games with my kids, the stimulus and activity is too intense. What I can do is sit by them and cheer them on, watching when I can and taking frequent shut-down moments.  I can watch my children play and climb. I can coach them through relaxation activities when upset, even if I can no longer help them solve the problem. Some days, I have found I am Almost Normal.

2. Find good things about what is different. With my children we find that not all the changes are bad. I am more patient. More willing to listen. able to take things at a slow pace, anything else is impossible. So, we enjoy slow walks; we look for spider webs, look at the mountains, feel the sun on our cheeks. I am finding that I like taking small steps and finding the small moments with my children. I find peace in taking time to rock them, to connect fully one-on-one with no other mental energy being spent elsewhere.

3. Find special moments or traditions to build with each child. I have found that by allowing my children to shape and share in choosing activities, mom isn't so good at thinking about things like this, they are more invested in the activity itself. These moments become more personal and they talk about them more than if I had planned a perfect event. Each week we try to spend time one-on-one with each child. This can take some creative planning, but a few minutes each week is completely possible.

4. Do not allow guilt to creep in when you do as much as you can.  This is what every good parent does. We give as much as we can when we have it. You can not pour water from an empty vessel. Accept that you will miss some things. There will be things you cannot do. Accept that this is the reality now. As long as you connect and built relationships of trust and love with your children, they will not lack for the emotional and physical development they need.

I am incredibly blessed in my journey to have loving support help me with the most important things in my life. I am blessed to have neighbors ready to help in case of emergency. I am blessed with rides to the grocery store when I need them. I am blessed. God is good. Work around instead of against your limitations and you will discover moments of pure joy.

God bless and keep you in His care.

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?

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.

Goal Setting

Goal #1 Increase opportunities for meditation and self reflection. As I do so I am happier and more able to cope with the realities of everyday.

I have been working on very specific goals that impact my ADL's, activities of daily life. It is vital to my well being to be making progress and show improvement. At times I become very discouraged but looking back, as I can see the progress I have made, it makes the work I do every day worth it. One goal area I am addressing is to be more mindful and present. To help with this I am including some of my favorite meditations. Mediation has been shown to have improvement with brain function. Added to physical activity and dietary changes, meditation helps me to manage my pain which at times is overwhelming.

I enjoy the work of many practitioners who teach mindfulness or guided meditations. Some are simply music that allow personal journey.

Deva Premal: 10 minutes

 

 

Healing Mindfulness Journey: 70 minutes

Years ago I was blessed to meet Terry Ledford and have benefitted from his work. Below is an example of some of what he does. You can also subscribe to his You tube channel.

God bless and keep you.

Taken Seriously

"No, it shouldn't be causing that. You are not really feeling that."

I can't begin to tell you how often I hear cries from others suffering brain trauma that report after seeing their doctor that they were ignored, talked over, or told that they were imagining things. The feeling of invalidation, abandonment, and outright confusion is awful. It is ok to be angry when you don't feel heard. Say it in a professional and supportive way. I have a few things that help me to be heard and address concerns when I see my doctor.

1. Write it down. Make and keep a list of questions in a dedicated spot that you will take with you for appointments. Be sure to leave space for answers. This provides clear guidance of what is going on and specific concerns you have as well as the answers from your doctor.
2. Request records. I am always requesting records of the previous notes at my appointments. This allows me to keep my own copies and often doctors do not have things organized from other providers unless they have a concern. I have provided copies to my rehab team as needed and this has helped to ensure clear and professional communication between all members of the team. In a few circumstances I caught how my notes had not been recorded properly, this could have created problems. With my copies it was able to be resolved correctly.
3. Have an advocate. This is a huge emotional experience. My mind does not recall everything well when it comes to appointments and reporting symptoms. Another person, one close to you can stay focused and ensure that needs are addressed. They also provide an additional sounding board if concerns arise.
4. Keep a calendar. Log things such as activity level, foods, and symptoms as needed. If you report severe headaches but are not being taken seriously, log them. No one can argue with a calendar showing that you are having severe headaches three to four times per week. (This was one tip I tracked before that helped them find my tumor to begin with.) Tracking my food intake helped me to identify that sugar and processed foods were increasing my pain levels and bad days, by decreasing those and changing my eating I was able to help reduce my own symptoms.
5. Be approachable. Develop relationships with supportive providers. All doctors have nurses and assistants that they trust and work with. Building positive relationships with these people will help you to be heard and taken seriously. When the team becomes invested in you as a person, your case will receive the attention it needs. They are in this field because they want to help, appeal to that. I believe firmly that my neurologist saved my life. I have no problem telling him that. By working with his team, I am also able to get the emotional care I need.

You can be heard. You can stand up for yourself in a kind way. You can provide records of dates and times that your symptoms are problematic. It is possible to do many of these things on your own, if necessary. I still bring someone along sometimes when I need another perspective. I accept that my brain is damaged. My memory is terrible. So, I need help. Look at what you need. You can do this. It is possible.

What I Wish I Could Say

So many things I wish I could tell you.

So many things I want to explain.

So many ways I wish I could help you,

But I myself, am just not the same.

-me

 

 

I wish I could clearly explain all the differences since this experience has begun. I want to tell you but am often unable to find the words to express the complex layers of the total experience. I have tried to draw it down to its finest points and offer help for any who may be going through life altering health challenges and brain trauma of any sort.

 

 

1. Brain trauma creates changes in how the brain functions and responds in all situations.

 

 

2. How our supports (family, friends, medical assistance) approach us, has a huge effect on our overall progress and well being. Healthy positive support increase confidence and encourage us to reach out, no longer fearing rejection or failure. Judgmental or critical supports will cause a shutting down and retreat from life. This challenge is big enough, don't make it worse. If you, as a support are struggling, get emotional support. This is offered through medical centers and social resources. Why? Because it is potentially traumatic, for everyone. Don't be afraid to ask for yourself. Emotional implications can crop up months or even years later and it is nothing to be ashamed of.

 

 

3. We will never be the same again. Get to know us all over again. My taste, voice, speech patterns, emotions, everything has changed. That is not necessarily a bad thing but good support will allow us to discover who we are even as you discover who we are. it can be a trial or an adventure, the difference is all in how you approach it.

 

 

4. Careful planning is vital to our overall success and coping with daily challenges. Daily schedules and consistency are required to avoid over-exerting ourselves and wasting our energy on the minutia of life. We desire to participate with others and enjoy aspects of living such as reading, watching movies, speaking with loved ones. If our time is spent trying to cope with our day, there is nothing left over for living.

 

5. Thought is required for every aspect of our lives. Things often taken for granted become huge tasks or ordeals for us to cope with. Medical care, planning our day, meals, medications, transportation- these when pooled together can encompass our entire day. I use a cane, not for balance, but to avoid over-exerting when I walk in trying to orient myself. The cane keeps me grounded so that I can speak while walking and my mind is not always focused on orienting itself in the physical space that I exist in.

 

6. Change has the potential to be devastating. Our brains work so hard just to function in a normal pattern that changes create huge disruptions to our process and can easily overwhelm our system of function. We will be more emotionally volatile and fatigue more easily. Not only that but the results of this disruption can continue days after the event or disruption. I have been planning for over 4 weeks how to cope with watching a movie with my family. Missing this event is not an option for me (We as a family are sitting and watching the new Star Wars release as three generations.) So, my supports are planning to help me be there.

 

7. Everything has cost. I am not speaking monetarily, I am speaking energetically. All of our life is a trade off. We exist in the reality that we are daily using our energy stores to simply function, there is nothing left past that point. Don't ask us to do more, we are simply incapable. This is inconvenient and upsetting. Feelings of inadequacy and failure can occur if loved ones do not offer support and empathy when it inevitably happens.

 

 

Brain trauma is life changing. The causes are many and carry their own, individual challenges. So many things I write here that I am unable to verbally express them. I have deep respect and love for those experiencing this trial. Deep love and respect for my supports; my family, my rehab team, my God. I am grateful for this opportunity and for the ability to retain much of my language skills. I am blessed and continue to move forward. God bless you.

 

Medical Marijuana

I was asked by one of my team a few weeks ago to look into the applications of medical marijuana, specifically the hemp seed (which has no THC) on tumor reduction and brain function. I have spoken to two other members of my team; both have encouraged a discussion with my neurologist. That's three of five.

This threw me for a complete loop as I tried to wrap my head around it before even trying to do any research, this is very slow for me.  You want me to ask my neurologist about what?

After weeks of digging through online files and trying to find my way past all the pothead culture, I have found a few articles that may help. In addition there is some exciting research into synthesized medications that may be able to address inoperable meningioma. (I will post more as I learn more.) Here are the (very) few articles I was able to find that have anything intelligent and reputable to say.

This article is on cancer but many of the same principles of treatment apply to brain tumor treatment. http://abcnews.go.com/Health/toddler-cancer-takes-cannabis-oil/story?id=15981324

Huffpost followed up on a documented story of recovery. http://www.huffingtonpost.com/2012/12/01/cannabis-for-infants-brai_n_2224898.html

This is the article written prior to the Huffpost article on the same story. http://jeffreydachmd.com/2014/04/cannabis-oil-brain-tumor-remission-jeffrey-dach-md/

As you can see there is not much to find that is not from sites that promote pot culture; what there is to find is both intriguing and challenging. If there is a natural solution that makes use of the bodies own T-cells to combat inoperable tumors, why are we waiting to begin trials? For many with inoperable tumors there is nothing to lose, but everyday they lose a little more of themselves until the brain can no longer function. The medical field would be so excited if a synthetically produced drug was able to achieve similar results. This is both hard and frustrating to navigate as a brain tumor survivor.

One day at a time, I tell myself. There is hope. That is the future and I am here to live in the present. I can do this. God bless.

Goals and Plans

The holidays come to us with joy and frenzy. Dealing with brain trauma/injury on top of that can easily send us over the top. We become fatigued and stressed by events that in the past we simply took for granted. Planning and priorities take the place of frenzied activity. This is not a bad thing. Paraphrasing advice on goal setting from Dennis Bonner, Ph.D. I have come up with the following guidelines.

 

1. Determine your long range goal. For me this year it is simply to spend quality time reinforcing traditions and connecting emotionally with my loved ones. That is a broad goal that can be overwhelming if I tried to do it all now. So, break it up into small do-able pieces. Each week try to have one emotionally honest moment with a loved one. Determine which holiday activities are important to continue this year, let go of the rest. Santa, for us that is a must. Looking at lights, another must. Caroling, not necessary. Sit down with your family and determine family goals and determine an order of importance, you may find that little is actually irreplaceable.
2. Set goals that stretch but do not overwhelm. You know your limits best, be honest about them. I am going to the opening day of Star Wars. This will stretch my abilities but I have support systems in place and plans such as headphones and polarized glasses if it becomes overwhelming. The actual event of sitting with my family to experience that together, it's worth planning for.
3. Set a simple schedule based on your priority list. Be honest with yourself. I can handle one simple hour long event per day; this means that I have an exit strategy if I get overwhelmed and as explained above, ways to help me regulate when overwhelmed. Be flexible. My speech pathologist reminds me to set my schedules in Jello- be open to change and ask your loved ones to support you in this.
4. Have reward and rest periods. You made it through your kids school concert with lots of people, sounds, and light- you have all earned an ice cream date. Enjoy.
5. Revise- it is ok to evaluate and revise your plans based on your real capabilities. What is not done now will happen again in the future, the thing to remember is "yet". You are simply not ready for that, yet.
6. Write it down. I keep a monthly and daily schedule. Both help me stay on track. You can no longer trust your memory, so take a notepad or method of recording appointments and activities with you. I even have my medication dosage times programmed with a reminder ring into my phone.
7. When writing goals be personal and proactive. Create the reality you wish to have. Begin with "I". Use emotional and action words to embrace the change and your reality in the change. Examples can be "I love walking every morning."  or "I feel amazing after my physical therapy stretches."
8. Put the goal where you can see it everyday. Right now I have motivation statements posted in my home. In addition to pictures of my loved ones reminding me what I am working for, I have the following statement posted where I see it multiple times per day: "Don't be gloomy. Do not dwell on unkind things. Stop seeking out the storms and enjoy more fully the sunlight--"

You can make it through the holidays after brain injury and surgery with amazing moments and experiences of love and caring. Take time, plan for it, and be easy on yourself. You can do this. It may not be yet, but it will be again. You've got this. God bless and keep you.