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. 

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.

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.

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.

"What Do I Say?"

We all have them, those moments and times when we can't fathom what someone else is going through and we freeze. What do I do? What can I do? What do I say? The doubts creep in, the second guessing. Wondering if we are making it worse instead of better. We fear putting ourselves out there. We fear crossing lines and boundaries and we sit, paralyzed, unable to move one way or the next.

Coming from someone who has had many bad days and good days all I can tell you, let go of yourself, your own ego, and do something. If you don't know what to say, say that. If you just hurt for someone, its ok to acknowledge it. The worst thing you can do is put the responsibility for your sense of ego on the person going through the trial. This is not about your agenda or experience, it is about the other person and showing them that they are not alone. That is it. It is not about you!

I would make some simple cautions; do not give advice, do not make things about you, and accept that the other person may not want your help.


What should you do? What can you do?

• Show and express real empathy. (B. Brown has an amazing video online that demonstrates how to show empathy to others.)

 

 

• Offer tangible help. Be willing to get your hands dirty; fold laundry, play with kids, bring chocolate. What need is best able to be filled by you? When do you need to recruit others to help?

• Be honest and genuine in your communications. Differences in lifestyle, economy, politics, even family status, well, they don't matter when showing love and concern for others. Be honest in your statements and the love and concern will come through. Trials are not a time for second guessing and judgment. As I said earlier, don't give advice.
• Most importantly, show love and concern for the person. This isn't about you and your ego. Recognition, honor, excitement- a real friend is in for the long haul, they don't need the attention garnered by helping.

 

I have heard it said that "If you can't be kind, be quiet." While good advice, silence can often speak of emotional distance to someone experiencing a life trial. I would suggest a soft smile, a hug or handshake, expression of concern for them as a person, and let go of you. Let go and serve them as you can, in the ways you can. We can, in all ways, trust in the spirit that leadeth to do good.

 



 

 

God bless and keep you. 

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.

Going Quiet

I find that I can go very quiet when coping with strong and often unfamiliar emotions. Despite this being a challenge I have worked on, even prior to my tumor diagnosis, it is still very difficult for me. The blessing is that I can feel and honestly express emotions, but sometimes I have to pull back in order to figure out what it is I am feeling and dealing with.

I have triggers and cues to help me identify areas of anxiety and stress. These can become incredibly overwhelming. In facing some struggles of the past few weeks, I have been told repeatedly to slow down. Anyone that knows me, knows this is not an easy thing. I live ready and waiting to see how fast I can run. (I ran sprints in track when I was younger because I didn't have patience for anything longer.)

I keep reminding myself that this is a marathon, not a sprint. I can be patient with myself and others. I can slow down and embrace the joy that is each moment. I can respect lags and periods of seemingly no progress for what they are, a chance to learn, to appreciate, and to grow inside.

It's not easy, but with God I can do it.

God bless and keep you.

Buffering...

Neuropsychologist update: So, my issue is that I am, shall we say, "Buffering".

 

With my results today we discussed where my issues are. Basically the brain filters amazing amounts of information every minute. This occurs at a rate of approximately 11 million points of data per minute. This information is received through the Senses and relayed to the Attention/Filter part of the brain. From here it is taken into the Short Term Memory ( to be later transferred into the Long Term Memory, if repeated.) Memory is taken and applied in the Thinking part of the brain.

 

 

My cerebellum and all left cranial nerves were affected by my tumor- essentially the filitering system is broken. I function lower than 86% of people when it comes to information absorbtion and intake. I cannot filter between vital and garbage information. Therefore I process slowly and only absorb so much before I shut down. These issues were most likely not caused by any surgery; but by the tumor, its size and location. I was informed that it was a blessing to have the tumor be a meningioma because if it had been comprised of brain tissue, I would have a very different story.

 

Yup; there it is. My brain filter/attention works at a level of 14%, meaning
that 86% of the population thinks faster and focuses more than I do.

 

I asked how I was able to function the way I did, his answer "You faked it." OK, then. Yeah, I probably did. I focused on other people first and distracting myself with that was a great way to pretend everything was fine while my mind worked in the background trying to catch up. He says I've got a great team, they are doing exactly what we need to do and he will see me in a year.

 

 

Good to know that my symptoms were not imagined. Good to know I have reason for struggling. Better to know there is something I can do about it. Ask questions. Follow up. Make sure you have an advocate and use your primary care doctor as your team leader. Let your team talk to each other. They all have a piece to the puzzle, putting it together can give you a clear picture of what to do for your care. You've got this!

 

God bless and keep you.

 

(My brother commented that working with dial-up service can be frustrating. So, I'll just sit here, buffering. Thanks buddy!)

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.

Just Keep Swimming

I just got out of my neuropsychologist appointment.

Relieved, hopeful, and ready to go - after I take a very long nap.

The neurological testing was extensive, but given in a watered down version so as to avoid wearing out my system. We reviewed visual skills, memory, tracking, spatial awareness, and so many other things that I am amazed at the ability our minds have to filter out so much accessory information on a daily basis.

In discussing overload, I found that not only do we have our 5 basic senses, we additionally have other senses. Sense of time, sense of space, sense of reality, sense of awareness, and many more. The mind is bombarded with millions of pieces of information each minute and we miraculously sort through all of that to form thoughts, plans, and behaviors. My sorting system is broken and gets jammed up with all of the daily stimulus.

Removing and reducing stimulus has been the plan. Now we are going to slowly increase stimulus, increasing my tolerance for functionality.  My team and I will work together on a plan that will support function and make use of coping skills such as touch/memory techniques to allow for the most efficient function possible.

I was encouraged to pursue nerve testing for my hearing loss. Essentially it was explained that when one is determined to increase physical strength, you don't sit on the couch waiting for your muscles to grow. The mind operates on the same principle. After trauma, weak or damaged nerves and functions can be improved by careful and focused work. A team approach helps to ensure the fastest road to recovery possible and waiting to "see what comes back" is not an option for me. I have never been a "wait and see" person. I am "give me a direction and watch me go".

I now have hope for a more focused direction.

My friends also on this journey; if your doctor has told you "I don't know why you feel that way." or "No, that wouldn't happen." Request a referral to a neuropsychologist. Request referral to speech pathology, occupational therapy, physical therapy. Do what you need to do to ensure that you have a successful recovery. Your team works for you. You are not inconvenient. You are not wrong. You feel what you feel and you are the patient, therefore, you are the priority. Stand up and ask for what you need to be successful.

You've got this.

God bless and keep you!

 

As of today

As of today I am considered fully disabled.

As of today I am admitting to myself how big this whole challenge has been.

As of today I will move to accept that I have limits.

As of today I resolve to do what I can to move beyond and through those limits.

As of today I choose to embrace my children more completely.

As of today I choose to be more present in the moment, this is all I have.

 

As of today I choose to let my life be lived, as much as it can.

As of today I will move forward, to the best of my ability, trying to make my corner of the world better.

As of today I accept my efforts for what they are, the best I have to offer right now.

As of today I will own my life and live.

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.

"If You Would Just..."

I know it isn't only me hearing well-meaning but tacky bullshit advice. Working in the mental health field you hear all the time "If they would try harder", "If you would just look on the bright side", "I had the same thing happen and it wasn't that bad." Anyone who imagines that this only happens with an invisible illness, let me break it to you, it doesn't.

It rarely happens, thank goodness, because I have pretty incredible friends but I have found that anytime you are dealing with a health issue, everyone's got an opinion. Most people keep their opinions to themselves, but there is always one that is so excited by the seminar, webinar, YouTube video, or article that they just saw that it is now their place to tell you how to be healed. Or to preach on the benefits of how quickly you would get better "If you would just..."

For all my Meningioma mommas and poppas out there let me say, "Go suck an egg." If all it took was a supplement, exercise, yoga, or meditation we would be healed. If the oil, probiotic, or organic food made my tumor disappear it would be gone. I still have a little souvenir making my life harder than it has to be.

Aside from having to defend my lifestyle, which is stupid, let me clear up a few things.

1. Not all tumors are cancerous.
2. Meningiomas have three basic causes; radiation, heredity, and prior injury. Possible links between the hormone progesterone are also being looked at for increasing growth.
3. Meningioma is only one type of tumor, there are many others.
4. Benign can still kill you. My tumor was benign and my doctors would not even give me a choice of care. I was admitted immediately and told it was surgery or I was going to die, I even had a general timeline of how long this would take. (They weren't talking months.)

Believing you know how someone else should live and heal is among the worst assumptions you can make. Let's review how to respond appropriately when dealing with someone disclosing health concerns.

• Them: "I have...I'm dealing with...I suffer from..."
• You: "That must be hard. Can I bring you dinner?" -or- "Thank you for sharing and trusting me. I would like to help. Can I watch your kids one day or drive you to an appointment?" -or- "Wow. I'm sorry."

See? You don't have to go any further. Empathy is looking at something from the other persons viewpoint. Telling is a big deal. The people I know don't need special treatment, they just don't need to deal with your emotional fallout on top of what they are already coping with. They need to be heard and acknowledged. That is it. Use a later time to inform yourself about their condition or talk about questions.

IF, and I strongly stress if you believe, after careful consideration, that the information is helpful and will benefit them, pass on the resource. Do not be surprised if they already have seen it and are not exactly thrilled about getting it again. You can also create a file of information to save for when or if they ever ask.

So, in conclusion:

"If you would just...show concern for who we are and express your love and support, that would be great."

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.

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.

 

What does Faith have to do with it?

Today the question was posed on a support group forum this person essentially asked- Why all the prayers posts? Isn't this a medical support site?

My reply on the forum was the following, "I think empathy and sharing the emotional challenges does have a place here. A medical only forum would still include that and for some hope and prayer are part of their medical and healing path. Choosing not to share in that way does not mean that it does not have value. I respect the rights of others but have gained needed encouragement and help on dark days for myself. I think if we shift more personal conversations to messages then it is fine. Emotional help is just as valid if not more so than physical symptoms.

I have to admit Faith and emotional support, for me, are large parts of healing. Faith creates hope and belief that this is not some blip on my life. This journey serves a purpose. I will come out of this stronger and better than before, because I have faith that I will. The psychological world is approaching the impact of faith and hope on healing. In fact my doctors have said that a positive outlook will say more about a patients recovery than any tests.

A positive outlook allows us to look past the pain and the hurt, and the now to see the future. The future we hope and pray to obtain. So yes, faith and prayers have  a place in the medical world. For some they are necessary, others may choose not to participate but that in no way should affect those of us who do. It comes down to simple respect and love for each other as human beings.

So, my prayers for your recovery and that you find the path to healing that you need. I believe that God loves us individually. He knows us. He knows who we are and what we need. He is a great God. May He bless and keep you.

Please enjoy the following messages on brain health and healing...

Importance of Death

 

"Before you can live a part of you has to die. You have to let go of what could have been, how you should have acted and what you wish you would have said differently. You have to accept that you can’t change the past experiences, opinions of others at that moment in time or outcomes from their choices or yours. When you finally recognize that truth then you will understand the true meaning of forgiveness of yourself and others. From this point you will finally be free."
-- Shannon L. Adler

 

Let yourself die. Let go of the part of you that seeks for approval from others, the part that doesn't protect your needs in favor of filling someone else's. Let go of what was to be able to embrace what is.

I recently said to a friend, dealing with their own health challenges- "It changes you. But then, I guess that's the whole point." We are the ones who decide if this life changes us for the better. Am I more compassionate, more loving, more present. Am I softer, kinder, more empathetic. Do I care more about others and show it?

Life altering events are meant to do just that, alter our lives. We are meant to take Gods hand and move forward into new life, a rebirth if you will. So, let the past die and embrace your future. God is there. He hears you. He will help you let go and move forward into your life. God bless and keep you. Let Him change your heart.

 

Rediscovering Faith

When you start with nothing, you are able to relearn everything. What an unexpected journey.

I got to start from scratch as regarding my personal faith. "What do I know?" I realize in this journey that I don't have to know everything. I just have to know what I know now, I will get there. For me it goes back to "yet"- I'm not there, yet. Coming out of surgery I could recall very little. Large gaps still exist in my memory. There is a lot going on that I have little control over.

So, what do you do when you have nothing? You start over at the beginning.

I believe in God. I believe that He is my Father and has a plan for my life. My job is to live it to the best of my abilities. God is in charge. This is His church. The people are fallible, but he is not. I can trust that whatever happen today, He is in charge and any concerns will be addressed in the time and place needed. I feel things so strongly, I feel the spirit and know that He directs my interactions with my children. During times of need I am more capable than I really am. I know He is there, helping me through with my children. I know He cares. I know He loves each of His children and cares for their eternal progression. I believe that he is directing my family. I see Him strengthen those around me. I am in awe of all he does.

This is enough for now. It is good. He will take me by the hand through the rest of this.

Gross Stuff No One Tells You

After a craniotomy or craniectomy there is a lot to take in. A lot of changes. A lot to think about, and then there is the stuff that no one talks about.

1. You will not be able to shower. Yup, no water immersion of any kind until cleared by your doctor. Sponge baths? Yeah, get used to it. Someone will help you wash, no modesty here. The nurse will be super professional and not look more than necessary. You'll be on a lot of pain killers, so this is only a mild inconvenience.

2. Food has no flavor. Literally everything tastes like cardboard soaked in Elmer's glue. You will likely be on a liquid only diet and have a ton of medications so you won't really care. There is a point when you move to solids that it still tastes like cardboard. This will diminish over time. Stay calm and enjoy relearning what you like now.

3. You will possibly have iodine film in your hair; it looks like chunks of dried blood when you brush or comb your hair. It's red and sticky and looks really gross around your incision. This film serves a great purpose in surgery keeping pesky hairs out of your open skull, but you may still be removing from your head up to a week after surgery.

4. Your incision will itch, a lot. We are talking burning fires in the seventh circle of hell. You will wake up at random times certain that some evil imp is using your head as a drawing board with a quill pen. And heaven protect anyone who dares to touch any part of your head without express and written consent. It is strictly off limits.

5. Random body functions will become impossibly hard. I remember it taking me four weeks to learn to swallow again. This included food, drink, and pills. It becomes difficult when you hold your pain killer in your hand and prepare to attempt to get it down for the third time. Any of your functions may be affected due to swelling in the brain following the trauma of surgery. Ask your health care workers. They have experience in this area and can help you through the minefield of new experiences.

6. Bowels, #2, the backend. Whatever you call it you will not be able to poop for the foreseeable future. When you can finally manage it with the aid of stool softners it will be an epic event that you are likely to share with anyone in your closest vicinity.

7. Riding in a car is an ordeal. Let's be very clear, you will not be able to drive for an extended period of time. What you may not consider is that even riding will overload your system with stimuli. It can be intense. Simple changes such as polarized sunglasses and closing your eyes will reduce the overload and help you regulate.

Overall, your brain has been reset. You can and will experience myriad changes. No two experiences are the same. Your experience will be as individual as you are. Let it be. Talk to your healthcare team and don't be afraid to ask questions. You will only know what you need if you ask. Anything is possible; you have undergone a life changing experience, accept now that you will never be the same, that is ok. The possibilities are endless. God bless you.