Daily Routine

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

Daily Routine:

           Wake up with family, dress, eat, medications.

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

Eat lunch. School work. Rest.

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

            Work with family to make and eat dinner.

            Family time. Read. Bedtime.

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

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

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

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

Getting Through Bad days

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


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

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

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

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

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

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

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

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

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

Daily Progress

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

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

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

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.

To Whom it May Concern;

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

Dear person-

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

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

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

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

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

-Me

A Meaningful Life

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

 

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

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

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

God bless and keep you.

 

 

 

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?

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.

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!

This Mothers Day

 

 

This is my first Mothers Day from surgery. My craniversary is right around the corner, 10 days after my birthday, just the end of this month. Not every day is perfect but there is something perfect in everyday. This. This is why I keep going. They drive me crazy sometimes, they are often too smart for their own good. My boys. The loves of my life.

 

I have been blessed to be able to be their mother for another year. I need help. Sometimes it takes a lot of help if I am going through more serious rehabilitation but these women and many others have pulled together in ways I never knew were possible. My sons have been held and loved when i could not do it. They have someone to run and play with them, because I cant always be there. They have learned that the love for them is infinite and from many sources.

 

I am deeply grateful for this past year and every year I will have to love and nurture these bright souls. This Mothers Day, I'm just grateful that I had the chance to keep going. 

 

May 5; Revenge of the Fifth

Continuing with the play on words, each May 5th is Star Wars Day revisited. Its easy to see why, with May 4th being Star Wars Day, well fans of the Empire want to play along too. Its silly and in good fun.

One thing not in good fun, is the long term prognosis for brain tumor patients. Meningioma, the most common form of brain tumor has increased its likelihood of occurrence. It used to be thought that only a small percentage of these tumors would reappear, that once beaten, you were cured. New research shows that this is not the case. It is now believed that fully 50% of all meningiomas will regrow at 10-20 years post removal. With patients being diagnosed at younger ages, this leaves us facing life threatening conditions or surgery multiple times in our lives.

The journey is never really over. Like the Sith, it can rise and reoccur at any time. Multiple tests and scans will be done over my lifetime. Because of the need for follow-up MRI I am required to limit my exposure to other forms of medical assessment; dental and chiropractic x-rays must be on an "as needed" basis.

The other specter for the rest of my life are seizures. Any time, any level of intensity. While I am not considered a "likely victim" of seizure, they can still just show up one day. I have to be prepared on how to deal with it. I had to teach my toddler to call his daddy in case mommy gets hurt and can't wake up. As one friend said- "Lots of free sides."

The journey is not over, I'm not throwing in the towel by any means. The long game is what concerns me now. One day at a time, I can do this. So can you. Together we can work to increase brain tumor awareness and work to a cure.

God bless you!

May the Fourth; Lessons on Recovery from the Star Wars Universe

So, Star Wars Day. A play on the date of May 4, well, it makes for a lot of fun. I can't help thinking about some of the lessons of the "Force" and recovery. Think about it:

1. Fear leads to anger, anger leads to hate, hate leads to suffering. When diagnosed with any brain tumor, well, our emotions are varied and valid. Those that allow themselves space to grieve and then choose to move forward have a much stronger outlook. No matter your tumor type or impact, your quality of life has a lot to do with your level of hope and belief that there is value in the experience. We grieve. We are angry. We also have the ability to hope and work for the future. Researchers are beginning to look at the impact of happiness and hope on recovery, all my providers affirm that there is an impact but it has not been well documented yet, I look forward to those studies being completed.
2. Do or do not, there is no try. Some may find this discouraging. I don't. This is permission to rest, to take time each day to recover. Some times I am unable to accomplish things. I just can't do it. This is ok. I can say no and not feel guilty or worry that I'm not doing enough.
3. Finish your training. Pushing for results may cause circumstances you don't want; slow down and take your time. Luke didn't listen to Yoda when told to slow down and learn. He rushed out ready to save his friends, right into a trap and a confrontation that he was not ready or prepared for. It is so easy to want to push for more than we are capable of. Trusting care providers and supports in our recovery is vital. Learning to slow down, to learn, and to give myself time to really heal is vital. Some rush right out to regain their lives and are shocked when the body and brain rebel. It doesn't always happen right away, but as one person said "You can take the time now, or your body will insist on the time later. You choose."
4. Always say I love you. Han Solo did not respond to a declaration of love with anything but "I know." I do not want to ever assume that my loved ones "know" they are loved. I want to tell them, frequently, so that they never doubt it. I want my actions to match my feelings. I try to show love, communicate love, and commit to always closing each interaction with a reminder that love connects us all.
5. The Force surrounds us and connects us. We, in this community and life, are all connected to one another. None of us is alone. The loss of one life, affects all of us. We offer strength, encouragement, and support to one another. When one is weak, another is strong. By sharing our strength and remembering our connections we can each find the resources necessary to live our life to the fullest capacity.

Some Day

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

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

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

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

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

It's not always easy.

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

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

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

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

God bless and keep you.

Lucky

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

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

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

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

I lived.

This is my story for the past 11 months.

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

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

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

I am lucky.

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

God bless.

(You Can) Go Your Own Way

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

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

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

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

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

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

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

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

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

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

It Figures

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

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

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

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.