Cognitive Aids for TBI

"So, what do you do now?"

It came up in conversation recently when I was asked what I now do with my days because I am no longer working full time. I was taken aback because I feel very much like I am always working. I end each day more tired than before my brain surgery and that is still functioning at about 30% of what I used to do on a daily basis. This functioning has improved over the past seven months, but I have hit the limits of physical healing and we are now into functional healing, or relearning things.

I have completed, on the advice of my speech pathologist, aids and schedule plans to help with my day and rest periods. These may be beneficial others who struggle with cognitive damage; PTSD, TBI, and even my "watch and wait" friends who are living with brain tumors.

I have a basic schedule then make adjustments depending on what I need to accomplish; phone calls to specialists, appointments, documentation required by services. Included in my schedule are basic household tasks, in addition to reminders for rehab and meals. If it's not on the schedule it may not happen. Heck, if it is on the schedule it may not happen. As J reminds me, "Set your schedule in Jell-O. Be flexible to your needs."

Begin by categorizing your daily events. What fills your bucket vs. what empties your bucket. Then identify what is fun and what is responsibility. I have been cautioned that without enough fun, you will begin to withdrawal and may become depressed, losing motivation to heal. The color code we use is just one way of categorizing events; think along the lines of a traffic light. All green activities are rest periods. These activities soothe and help my mind heal.

Minimal Activity/ Stimulation

Does not cause rapid cognitive fatigue GREEN

• Washing laundry
• Folding clothes
• Eating                                   F
• Walking
• Playing with the dog
• Crochet                                F
• Reading to boys           
• Dusting furniture

 Intense Activity/ Stimulation

Doable but challenging, leads to overload GREEN to YELLOW

• Riding in the car
• Sorting laundry  
• Listening to music            F
• Watching TV/movies       F
• Any outing including rehab or therapy
• Making beds
• Meal planning
• Cooking                             F

 Devastating Activity

Rapid overload, frustrating, not do-able RED

• Emotional phone calls
• Driving
• Loud/lots of  talking
• Long shopping trips with boys
• Listening to arguing/snapping

 Changes in activity/plans- I have to rest to adjust my internal systems to the new plan.

F= Reward activities

Below is a sample of my daily schedule as it stands right now. Keep in mind that this has been adjusted over the past seven months. What I can do now, is much more than what I used to be able to do.

Cognitive Function Weekly Schedule
Day	Sunday	Monday	Tuesday	Wednesday	Thursday	Friday	Saturday
Morning	7 Breakfast Rest 9 Church or rest	7 Breakfast Rest PT/OT Cleanup   10 Shopping   Rest	7 Breakfast Rest PT/OT Cleanup   10 Write   Rest	7 Breakfast Rest PT/OT Cleanup   10 Appt.   Rest	7 Breakfast Rest PT/OT Cleanup   10 Park   Rest	7 Breakfast Rest PT/OT Cleanup   10 Finances   Rest	8 Breakfast Rest 9 PT/OT Rest 10 Chores   Rest
Afternoon	12 Lunch   2 Rest/nap       Dinner prep Rest	12 Lunch Rest 2 Early day School time Rest Dinner prep Rest	12 Lunch Rest Play/rest School time   Rest Dinner prep Rest	12 Lunch Rest Play/rest School time   Rest Dinner prep Rest	12 Lunch Rest Play/rest School time   Rest Dinner prep Rest	12 Lunch Rest Play/rest School time   Rest Dinner prep Rest	12 Lunch Rest 2 Outing Rest/nap
Evening	5 Dinner Clean up Rest   7 Movie Bedtime 10 Mom Bed	Play time 6 Dinner Clean up Rest 7 FHE Kid Bedtime 10 Mom bed	Play time 6 Dinner Clean up Rest 7 Art Kid Bedtime 10 Mom Bed	Play time 6 Dinner Clean up Rest 7 Reading time Kid Bedtime 10 Mom Bed	Play time 6 Dinner Clean up Rest 7 Sewing Kid Bedtime 10 Mom Bed	Play time 6 Dinner Clean up Rest 7 Game night     11 Mom Bed	5 Dinner prep 6 Dinner Rest Menu Planning Bath time 11 Mom bed

 I hope this can help. God bless.

Trapped in Myself

So. I did it. I watched Still Alice. Incredible.

I mean that. The movie had a scope and grasp of brain trauma that was real. A friend who has also undergone a craniotomy recommended it and so I got up the guts to put it in my Netflix rotation. It took a few days after it arrived for me to feel brave enough to watch. I sat there, awed. I have finally found something to help me show/explain to others what post craniotomy life is like. I know the story is about early onset Alzheimer's. However, what Alice experiences is so similar to what many experience after tumors and brain surgery.

Blurred vision, disorientation, vulnerability. Lost memories. Decreased cognition. Poor comprehension and memory lapses. This is my life right now. The biggest difference, I get to heal. I get better. Not daily, but monthly there is improvement. I am amazed at the courage of some, to go forward knowing that this may be as good as it gets. Today may be the best it ever is.

In the movie I was most fascinated by the family response. Withdrawal, denial, shame, and fear were there in all their glory.

Meningioma tumors have three causes. One of those causes is heredity. Brain tumor is part of my family history. This is now something my children will have to think about and may potentially face. That is my biggest fear. Not for me, but for them. I don't fear for my life or what I am going through. I fear for my boys. That they will fear or hide from this because it is scary. It can be frightening. You face life changes on a grand scale. And no one knows what will happen.

At this point you have to put your all in God. He is the only one who knows what is to come. He cares for you and me. He cares for my boys as much as I do. He desires their growth and happiness. I can trust in that. Come what may, that is where my faith is.

Bills, Statements and Explaination of Benefits

So much paperwork. I constantly amazes me at the amount of documentation required for my case. The case notes, updates and reviews are enormous. My personal medical file has gone from reasonable to unbelievable. I have a briefcase that holds my files, MRI's, and medical payment information.

With brain surgery you can pretty much expect to either be on a payment plan or on financial assistance. Keeping track of payment dates and ongoing care is pretty fatiguing. Sometimes I pay a bill and then check to see later if I double paid. For one event there is the basic bill, then an explanation of benefits from insurance, then a letter or receipt for paid bill. Not only that but I also get the fun job of maintaining copies of current treatment plans. Why, you may ask? Well, I see five different professionals who work on my case. This does not include various radiologists and test results that I may be sent for.

Can we just take a reality check. I have brain surgery in May of 2015. I have brain damage and am still plagued with deafness, cognitive overwhelm and sensitivity to light and sound. Trying to organize this information, let alone try to understand all that is going, on wears me out. That is a job in and of itself.

I admit I sometimes just do what they tell me to because I can't keep it straight. In this I feel out of control and very vulnerable. It is not a comfortable feeling. It takes me days to work through the anxiety associated with trying to understand. So, I put it away until next month. When I will get to do it all over again.

Oh, and the best part- my follow-ups are next month. More appointments

 

and payments on the way.

Rudolph- That Amazing Reindeer

On a December night in Chicago several years ago, a little girl climbed onto her father's lap and asked a question. It was a simple question, asked in a child's curiosity, yet it had a heartrending effect on Robert May.

"Daddy," four year old Barbara asked, "Why isn't my Mommy just like everybody else's mommy?"

Bob May stole a glance across his shabby two-room apartment. On a couch lay his young wife, Evelyn, racked with cancer. For two years she had been bedridden; for two years all Bob's income and smaller savings had gone to pay for treatments and medicines. The terrible ordeal had shattered two adult lives. Now Bob suddenly realized the happiness of his daughter was also in jeopardy. As he ran his fingers through Barbara's hair, he prayed for some satisfactory answer to her question.

Bob May knew only too well what it meant to be "different". As a child he had been weak and delicate. With the innocent cruelty of children, his playmates had continually goaded the stunted, skinny lad to tears. Later at Dartmouth, from which he graduated in 1926, Bob May was so small he was always mistaken as someone's little brother. Nor was his adult life much happier. Unlike many of his classmates who floated into plush jobs, Bob became a lowly copy writer for Montgomery Ward, the big Chicago mail order house. Now at thirty-three, Bob was deeper in debt, depressed and sad.

Although Bob didn't know at the time, the answer he gave the tousled haired child on his lap was to bring him fame and fortune. It was also to bring joy to countless thousands of children like his own Barbara. On that December night in the shabby Chicago apartment, Bob cradles his little girl's head against his shoulder and begins to tell a story...

"Once upon a time there was a reindeer named Rudolph, the only reindeer in the world with a big red nose. Naturally people called him Rudolph the Red Nosed Reindeer." As Bob went on to tell about Rudolph, he tried desperately to communicate to Barbara the knowledge that, even though some creatures of God are strange and different, they often enjoy the miraculous power to make others happy.

Rudolph, Bob explained, was terribly embarrassed by his unique nose. Other reindeer laughed at him; his mother and father and sister were mortified too. Even Rudolph wallowed in self-pity.

"Why was I born with such a terrible nose?"

"Well," continued Bob, "One Christmas Eve, Santa Claus got his team of husky reindeer, Dasher, Dancer, Prancer and Vixen ready for their yearly trip around the world. The entire reindeer community assembled to cheer these great heroes on their way. But terrible fog engulfed the earth that evening, and Santa knew the mist was so thick he wouldn't be able to find any chimney.

Suddenly Rudolph appeared, his red nose glowing brighter than ever, Santa sensed at once here was the answer to his perplexing problem. He led Rudolph to the front of the sleigh, fastened the harness and climbed in. They were off! Rudolph guided Santa safely to every chimney that night. Rain, fog, snow and sleet; noting bothered Rudolph, for his nose penetrated the fog like a beacon.

And so it was that Rudolph became the most famous and beloved reindeer. The huge red nose he once hid in shame was now the envy of every buck and doe in the reindeer world. Santa Claus told everyone that Rudolph had saved the day and from that Christmas, Rudolph has been living serenely happy. "

Little Barbara laughed with glee when her father finished. Every  night she begged him to repeat he tale until finally Bob could rattle it off in his sleep. Then at Christmas time he decided to make the story into a poem like "The Night before Christmas" and prepare it in bookish form illustrated with crude pictures, for Barbara's personal gift.

Night after night, Bob worked on the verses after Barbara had gone to bed for he was determined his daughter should have a worthwhile gift, even though he could not afford to buy one. Then as Bob was about to put the finishing touches on Rudolph, tragedy struck. Evelyn May died.  Bob, his hopes crushed, turned to Barbara as his chief comfort. Yet, despite his grief, he sat at his desk in the quiet now lonely apartment, and worked on "Rudolph" with tears in his eyes.

Shortly after Barbara had cried with joy over his handmade gift on Christmas morning, Bob was asked to an employee's holiday party at Montgomery Ward. He didn't want to go but his office associates insisted. When Bob finally agreed, he took with him the poem and read it to the crowd. At first the noisy throng listened in laughter and gaiety. Then they became silent, and at the end, broke into spontaneous applause. That was in 1938.

By Christmas 1947, some 6,000,000 copies of the booklet had been given away or sold making Rudolph one of the most widely distributed books in the world. The demand for Rudolph sponsored products, increased so much in variety and number that educators and historians predicted Rudolph would come to occupy a permanent niche in the Christmas legend.

The above account was given to me years ago. History sometimes tells different tales of the origin of a story. Below you can see and read with Barbara the original manuscript and read other thoughts on the origin of Rudolph. For personal reasons. I still love the above story. I am a different kind of mommy without the ability to run and roughhouse with my young boys. There is still joy and maybe like Rudolph, I will also find purpose in this new life.

 Robert May and Rudolph

Snowed In

Sometimes with healing I feel completely snowed with all that has happened. Covered in a land of icy white that leaves all to the imagination, under a layer of snow. I have found joy in the weather despite being homebound when this happens.

Everything is white and clean. The chill air calms my nerves and allows me to function longer and better. Summer heat and its resulting fatigue are only a memory. Everything smells lovely; cocoa and cider, cookies, and homemade bread. Taste is still a journey with part of my tongue numb, but I can enjoy the good stuff. A side benefit is that cookies don't taste quite the same, so I don't eat as many. I rest more, take it easy and slow. I'm more patient and willing to take my time with things.

A snowstorm has hit this week and today I woke up to find everything white. We can't even see the city on the east bench of the valley. Flurries continue to swirl and all I feel is safe and warm. Not everything is perfect, I don't need it to be. There are perfect moments of joy and that is more than enough. What a glorious journey life is.

God bless and keep you and may you find joy this holiday season.

The Magic Ornament

A Christmas Story
Told to Kathryn Tew by her father

PAUL liked the tinsel, the candy canes, the tiny drums and little stockings on the pretty lady's Christmas tree. But there was one ornament that he liked best of all. He pointed at it and said, "This is pretty, just like you."

She replied, "Thank you, Paul, for saying such a kind thing."

Christmas came and then it was gone. The pretty lady sadly took the candy canes, tiny drums, the little snowman, and all the other decorations off the tree and putt hem in boxes. Last of all she reached out and gently grasped the beautiful ornament. Then she sat down and held the glistening ornament close to her heart. She thought of Paul's kind words, "This is pretty, just like you." She said softly, "I will mail this ornament to Paul. He will be happy to have it."

Paul was very surprised when he came home from school and saw the box. He eagerly opened it and saw the beautiful ornament. He was excited because it was such a special gift.

Many years passed and Paul grew up. One happy day he married a girl that he loved with all his heart. The next year, just before Christmas, he showed his wife the ornament and told her the story of how the pretty lady gave it to him. Then they talked about their new baby that would soon be born. That night Paul dreamed that the pretty lady had become old and had gone to heaven. In his dream he saw an angel meet her there. The angel asked, "Would you like to work in our nursery?"

"Oh yes," said the pretty lady. "I love children."

The pretty lady looked at the little babies and felt happy to be in such a wonderful place. Looking at one child she said, "This baby looks like a boy I knew many years ago named Paul. I would love to see him again."

The angel in charge said to the two messenger angels, "Go find Paul for her."

"But," said the messenger angel, "how will we know him?"

The pretty lady replied, "It is Christmas time. On his tree you will see a beautiful Christmas ornament that seems to glow."

The angels said, "We will find it." And away they went.

In his dream Paul saw the angels look in his window. "There! There is the ornament!" One shouted. "That man must be Paul!" The angel quickly returned and said, "WE found him. His wife is going to have a baby."

Looking all around the nursery, the pretty lady said, "I must find just the right one for Paul." Finally she reached down at a most special baby. As she did, the little one smiled. The next morning Paul told his wife about the happy dream.

Three days after the baby was born, the grandparents, Aunt Susan, and cousin Angela came to call. "Oh my," they said. "This is such a special baby."

Paul and his wife smiled as they thought, "Of course it is a special baby. This baby was picked in heaven just for us!"

As the years passed, the pretty lady picked out other special babies for Paul and his wife. Sometimes in the evening Paul would read stories to the children. Mother would comb little Sarah's hair. They were a happy family.

Finally Paul was getting old. At Christmas time he thought, "I wonder, if I gave the magic ornament to the young couple down the street, would they also have special children?"

One winter night he left the ornament on their doorstep.

The young couple did have special children.

Later they gave the ornament to someone else. Today no one knows where the ornament is. No one that is except the pretty lady. She knows, and wherever it is she sends special children to live in that home.

Perhaps your family has the magic ornament. All in your family are very special, aren't they? I think that you must have it.

May the magic ornament be on your Christmas tree forever.

Mothers and Brain Research

I found this article today that completely blew my mind. Who knew that my boys may have helped save my life? This shows that women are an amazing resource for science. Until recently all medical trials have been done on male patients as the female brain was considered too erratic. Well, it just goes to show that current trends support research on all types of person. I fully encourage you to read this.

Children's Cells Live in Mothers

Love at Christmas

Christmas is for Love
Author Unknown

Christmas is for love, it is for joy, for giving and sharing, for laughter, for reuniting with family and friends, for tinsel and brightly colored packages. But mostly Christmas is for love. I had not believed this until a small elf-like student with innocent eyes and soft rosy cheeks game me a wondrous gift one Christmas.

Mark was an 11 year old orphan who lived with his aunt, a bitter middle aged woman who was greatly annoyed with the burden of caring for her dead sister's son. She never failed to remind young Mark, if it hadn't been for her generosity, he would be a vagrant homeless waif. Still, with all the scolding and chilliness at home, he was a sweet gentle child.

I had not noticed Mark particularly until he began staying after class each day (at the risk of arousing his aunt's anger, I later found) to help me straighten up the classroom. We did this quietly and comfortably, not speaking much, but enjoying the solitude of that hour of the day. When we did talk, Mark spoke mostly of his mother. Though he was quite small when she died, he remembered a kind, gentle, loving woman who always spent much time with him.

As Christmas grew nearer, however, Mark failed to stay after school each day. I looked forward to his coming and when, as the days passed, he continued to scamper hurriedly from the room after class. I stopped him one afternoon and asked why he no longer helped me in the room. I told him how I had missed him, and his large eyes lit up eagerly as he replied, "Did you really miss me?" I explained how he had been my best helper.

"I was making you a surprise", he whispered confidentially. "It's for Christmas." With that he became embarrassed and dashed form the room. He didn't stay after school anymore after that.

Finally came the last day of school before Christmas. Mark crept slowly into the room late that afternoon with his hands concealing something behind his back.

"I have your present," he said timidly when I looked up. "I hope you like it." He held out his hands, and there lying in his small palms was a tiny wood box.

"It's beautiful, Mark, is there something in it?" I asked opening the top to look.

"Oh, you can't see what's in it," he replied, "and you can't touch it, or taste it, or feel it, but Mother always said it makes you feel good all the time...warm on cold nights, and safe when you are all alone."

I gazed into the empty box. "What is it Mark," I asked gently, "that will make me feel so good?"

"It's love," he whispered softly, "and Mother always said it's best when you give it away." He turned quietly and left he room.

So now I keep a small box, crudely made from scraps of wood on the piano in my living room and only smile as inquiring friends raise quizzical eyebrows when I explain that there is love in it.

Yes, Christmas is for gaiety and mirth and song, for food and wondrous gifts. But mostly... Christmas is for love.

Be open, be loving, be accepting and see what is being offered this year. God bless 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.

White Envelope

Christmas Story: For the Man Who Hated Christmas
By Nancy W. Gavin

It's just a small, white envelope stuck among the branches of our Christmas tree. No name, no identification, no inscription. It has peeked through the branches of our tree for the past ten years.
It all began because my husband Mike hated Christmas. Oh, not the true meaning of Christmas, but the commercial aspects of it—overspending and the frantic running around at the last minute to get a tie for Uncle Harry and the dusting powder for Grandma—the gifts given in desperation because you couldn't think of anything else.

Knowing he felt this way, I decided one year to bypass the usual shirts, sweaters, ties and so forth. I reached for something special just for Mike. The inspiration came in an unusual way.

Our son Kevin, who was 12 that year, was on the wrestling team at the school he attended. Shortly before Christmas, there was a non-league match against a team sponsored by an inner-city church. These youngsters, dressed in sneakers so ragged that shoestrings seemed to be the only thing holding them together, presented a sharp contrast to our boys in their spiffy blue and gold uniforms and sparkling new wrestling shoes.

As the match began, I was alarmed to see that the other team was wrestling without headgear, a kind of light helmet designed to protect a wrestler's ears. It was a luxury the ragtag team obviously could not afford.

Well, we ended up walloping them. We took every weight class. Mike, seated beside me, shook his head sadly, "I wish just one of them could have won," he said. "They have a lot of potential, but losing like this could take the heart right out of them.” Mike loved kids—all kids. He so enjoyed coaching little league football, baseball and lacrosse. That's when the idea for his present came.

That afternoon, I went to a local sporting goods store and bought an assortment of wrestling headgear and shoes, and sent them anonymously to the inner-city church. On Christmas Eve, I placed a small, white envelope on the tree, the note inside telling Mike what I had done, and that this was his gift from me.

Mike's smile was the brightest thing about Christmas that year. And that same bright smile lit up succeeding years. For each Christmas, I followed the tradition—one year sending a group of mentally handicapped youngsters to a hockey game, another year a check to a pair of elderly brothers whose home had burned to the ground the week before Christmas, and on and on.

The white envelope became the highlight of our Christmas. It was always the last thing opened on Christmas morning, and our children—ignoring their new toys—would stand with wide-eyed anticipation as their dad lifted the envelope from the tree to reveal its contents. As the children grew, the toys gave way to more practical presents, but the small, white envelope never lost its allure.

The story doesn't end there. You see, we lost Mike last year due to dreaded cancer. When Christmas rolled around, I was still so wrapped in grief that I barely got the tree up. But Christmas Eve found me placing an envelope on the tree. And the next morning, I found it was magically joined by three more. Unbeknownst to the others, each of our three children had for the first time placed a white envelope on the tree for their dad. The tradition has grown and someday will expand even further with our grandchildren standing to take down that special envelope.

Mike's spirit, like the Christmas spirit will always be with us.

I love Christmas stories that share the meaning of what it is to give without hoping to receive. I love my family, my country, my God. I have been eternally blessed this year and pray that you will see the blessings in your trials. God is good. God has you in His hands, trust the journey and look at how you can give. I would encourage you to give to small local causes as many larger organizations have high overhead that prevents your donation from offering as much relief as otherwise possible. Below I have included links for the best and most highly rated charities in terms of fiscal responsibility and low overhead- more of your donation makes it to where it should be.  Charity Navigator

God bless you!
 

Holiday Update

Today is the start of the Christmas holidays. Kids home make for crazy mom still recovering. I am trying to apply all I have learned from therapy and rehabilitation. New studies are coming out about brain food. Research trials are being started that are meningioma specific. Other studies offer hope for those suffering from different types of brain tumor. Family is here to help and the boundaries we have set are holding.

I made it through watching Star Wars with my family; my accommodations helped. It was pretty overwhelming and I didn't get much else done that day but it was worth it to watch the movie together with my boys.

Cookies got baked. Three of us working on it helped and one or two batches per day is really not much with the mixer. Gifts bought well in advance helped, wrapping was a breeze because all that was left were a few gifts and putting on bows.

Here is what I have found works.

1. Small daily effort does more than huge sustained effort.
2. Breaking chores into smaller tasks means I can rest whenever necessary.
3. Setting a daily, weekly, and monthly plan ensures that I don't lose track of my priorities.
4. Self care comes first.
5. Time for fun is a must; otherwise your emotional health suffers.
6. Its all about relationships.
7. No one cares about the grand gesture, being there and being emotionally available is all most people need.
8. Begin with what matters and the rest will find space or fade away.
9. Time for God is necessary for my spiritual and emotional health.
10. Write it down; memory problems can be circumvented if you write things down.

The holidays are doable. We are half over but are currently on track.

 

I am not overdoing it but that is still a possibility. Hope that you hold your loved ones close this year. Love you. God bless 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...

Fantasy and Healing

Healing can be so hard some days. Some days you just exist trying to get through the headaches, nerve triggers, and emotional strain of living a half-life. When you survive a brain tumor your abilities can be greatly diminished. I know many who have recovered faster than myself, I also know many who struggle more who do not have support. For those dear friends, relief can be found in simple living. Respite can be found through fantasy, fiction, and living through others. We reach out but with diminished abilities and challenges reaching out can trigger collapse or, for some, seizure where brain function will cease for a period of time.

 

The reality of MRI's, medical bills, brain injury, and the daily knowledge of our own mortality sets us up for emotional distress, over and above the physical changes to our emotional chemical brain. Magic and fantasy, classic escapism, but it can become necessary to make it through the overwhelming days. To have adventures in safe space, to begin to reach out first through illusion, and then with others.

 

Fantasy offers respite and escape. It is easy to become trapped and stuck in this cycle, but if you always remember that it is respite only, a short break from the pain and distress. If you use this time to open up and re-engage, fantasy and fiction are positive. They offer a refuge in the midst of trying circumstances. Find magic and embrace it as part of your own. I play, I imagine, I paint. Anything to find space away from trauma. But, I always come back ready for another day. Imagine and you will get through the bad days.

 

Find heroes and villains. A friend of mine has named her tumor Voldemort from Harry Potter. Another calls her tumor Darth Vadar. Using fantasy in this way to address what scares us gives us strength. Both Vadar and Voldemort were defeated. My friends will also overcome any challenges they are presented with, why? because they believe that they can. They use fantasy as a way to gain power to fight the pain and stress, the trauma. We know where the real world is but storytelling, imagination, these are ways to address painful circumstances that otherwise are overwhelming.

 

God bless and keep you. You can get through bad days. If it takes a Lord of the Rings marathon, so be it. Tomorrow will be better. Live long and prosper and may the force be with you.

 

  

 

                            

Tender Mercies

 Everything I am now and everything that I can yet be is built upon the tender mercy that God has shown to me personally.

"Sometimes progress in spiritual things can seem slow or intermittent. Sometimes we may feel that we have lost ground, that we have made mistakes, or that our best efforts to find the Savior are not working. If you feel this way, please do not give up--ever. Go right on believing in Him and in His gospel and His Church. Align your actions with that belief."

 We create through our internal discourse the reality we expect to achieve for ourselves. Faith, hope, belief these things cause us to take daily actions that will add up to create our reality. Step forward in faith and belief. God is good and His promises are sure. Happy Sabbath!

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.