Remaking the Holidays

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

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

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

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

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

We need to have reasonable expectations of ourselves and others. 

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

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

No apology. No explaination. No agenda necessary. 

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

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

Don't Box Me In: Breaking Out of the Disablity Mold

Having a disability offers an interesting perspective of the world. It seems that everyone has a preconceived idea of who you are and what you are about. It can become disheartening and frustrating when you come up against these imposed expectations. People, in general, are not happy to have their pre-conceived ideas challenged. They push back, trying to force who you are and what you are capable of into a box titled everything from "Disabled" to "Un-able".

The belief of "Unable" is a common one. Many people focus on what was lost, what we don't have, what we are perceived to be lacking. The idea that all persons with disability are somehow unable or incapable is just wrong. Many of those who fall into the disability category offer many more abilities. Those abilities can be stronger and function at a different level even than fully well persons.

One example of this is my own hearing loss. After extensive and exhaustive study it has been determined that my hearing will not be able to come back. I am fully deaf on one side. Any one who has been following my writing can tell you that I suffer from hearing so acute that I can experience physical pain in normal social settings. Pain because the volume and tones that I am able to detect are heard at a higher and more intense level than those with normal hearing.  In order to attend events such as watching a movie with my family I take along headphones to muffle the sound enough that I can tolerate sitting with them for the duration of the movie. Despite such precautions, I still hear the movie so acutely that it taps my energy and often leaves me fatigued for hours afterward.

Another example from current media is the idea of Dare Devil. His loss of sight led to an uncanny awareness of everything that he could hear, see, and even touch. This is not to say that all persons with disabilities have overly developed senses in other areas, but each of us has adaptations in other areas where our mind and body have come together to allow us a higher level of living. Higher than if we just wallowed and sank into our disability.

People are comfortable with the predictable. Challenging our own perceptions and paradigms is hard enough, then we venture into the world. Taking our internal fight into society engenders a fight of another kind, the fight to be seen. It is talked about in the disability community the idea of invisibility. We are looked past in the grocery store, eyes skim over us, pretending we are not seen or that the "shame" of our disability is not noticed.

Children are rushed away, not able or encouraged to ask questions and find understanding. Many of us are prepared for and love questions, when we can take the unknown out of the equation, we are seen. Children are incredibly honest, they will call it like it is. This is utterly refreshing. The open and nonjudgmental queries of a child trying to understand why someone looks or sounds different opens the rest of us up to really see one another. I am no longer invisible.

How do I think other people should treat disability? Disability is simply a part of life that we work around or through. It is a corner of who I am, but it is not everything I am. Like having brown hair, it is a physical descriptor, not my identity.

I am not ashamed to use a cane or have trouble hearing on one side. I am not ashamed to stutter, have trouble forming words, or misuse words. I know who I am and where I come from. Those who look past, who don't see, who use the excuse of "I didn't want to offend", they should be ashamed. It is when we stop seeing one another and really listening that problems fester and worsen.

If you really want to look past the label, if you really want to avoid offense, then see me as a person. Don't pretend that I am not there or that I don't exist. Ask me questions out of concern and a desire to understand and then move on. Ask me about the rest of my full life. Ask me about my kids, my dog, my husband. Talk to me about stars and small towns. I can talk about spirituality for hours. I love to go hiking. I paint, I draw. I am not my disability. It is a reality of my life, but it is only one part of my life.

The lessons I have learned through this journey continue to amaze me. I can teach you about having and creating a full life outside of your challenges. I can teach you that bad days don't last, that life is beautiful and worth living. I can teach you about losing everything you thought you were only to discover who you really are.

What I can offer is valid and needed, so I will continue to share and write. I will keep standing up and demanding not to be boxed in by the expectations and preconceptions of others. I will keep demanding to be seen, to shake up the ideas of what you think you know until each of us is seen for who we are, instead of the idea that is most comfortable for someone else. I will keep speaking until those who are considered "Disabled" are no longer seen as unable but valued as members of the same society who can offer valuable and necessary perspective and insight. Let us out of the box, we don't belong here.

Eating

One of the biggest changes for me is pretty small and simple, but it affects me daily. One of the areas damaged is my ability to sense and feel hunger. I simply no longer have it. I also have lost much of my sense of taste. In the beginning I had noticed changes, when everything tasted like child's paste. At this point, I'm not really expecting it to come back.

I have trouble tasting salt. There have been some really bad mix-ups when I cook unless I have help. I also love sushi, so much. (This is funny because I hated it before.) I think I have pretty much narrowed it down to the spicy mayo, siracha sauce, and hot mustard. These, for some reason, taste to me. To be able to taste any food is amazing. I've started adding spicy mustard to sandwiches just so that I can taste.

I'm working with my doctors on keeping to a meal schedule and eating healthy portion sizes.  I tend to not eat enough and have lost a lot of weight over the last year. Some weight loss is ok, too much is not good because my body is still replacing lost and damaged tissue. We are tracking it and it is not at unhealthy levels. I have the most amazing team that help me to make sure that I do not suffer needlessly.

I loved food. Flavors, textures, the layers of savory and sweet. Oh well, every day there is something different, but every day I am here. I stumbled across a random fact the other day, a baby does not at first know how to taste salt. It takes four years for them to be able to detect it in their food. I'm giving myself four more years but not stressing over it too much. My husband loves sushi so for now, we just make sure that I get some on a semi regular basis.

God bless you!

The Logic of Not

My posts have been full of fear, anxiety, and the unknown in recent days. I am trying to understand a concept that I feel is best put into words because this is not something that I alone struggle with. In my most recent speech therapy sessions, in relearning how to think and apply logic, we have found that I have a difficult time grasping the concept of "Not".

Not is the simple idea that something is not true or is Not a rule. For example, the horse is not in the pasture. For me, recovering from brain injury, this creates immediate panic. If the horse is not in the pasture, where is it? Another person may make the logical step that it is simply not there at this time, but it will return. For me the idea of where it is not is so vast and consuming that I become lost in the universe. I am floating somewhere around the rings of Saturn wondering if the horse is grazing in orbit. I am unable to rule out obvious untruths because this filter no longer exists for me. This is something we learn. I become a child asking, not why but what? If Not, then what?

Not creates infinite questions as I try to grasp what is true. However, with the idea of Not, you cannot answer the question in this way. Not, loses its value when you determine what is. For example, take the same horse and go a step further. If I say the horse is in the barn, I am no longer working within the world of Not, I understand what is.

This is applied through the use of game cards. Using color and number (right and left brain) I am able to determine which card applies to the rule, and which card does not. I can determine if a card is red in color, with a value greater than 4 that it is true. I can also determine if it is false. When that idea is turned on its side, when I have to decide if a color is Not greater than 4 and red in color, my mind panics. Post-trauma, I do not understand. The idea of infinite possibility is terrifying to me. I want things to be concrete, certain, all i's dotted and t's crossed.

When I heard that I did Not have a craniotomy, I needed to understand then, what is. This need to understand is a very real visceral need to grasp a concept beyond myself and what has become known and familiar. I am trying to apply a higher level of logic to a frightening experience. Hearing about a slightly different procedure, I need all my questions answered again. Why? Because in order to control and manage my anxiety, I am trying to answer multiple questions in regards to the new information presented. I cannot make the leaps in logic myself. There is not much information on craniectomy. All I know is what I can find online, and it is not much.

What I can find assures me that it was the right choice and that, considering the pressure on my brain, it made the most sense to leave the flexibility in case of additional trauma. I am left with the whole universe of questions as to what this means now.

So, now what?

Pioneering Awake Brain Surgery

I recently was privileged to read an article penned by a writer given the opportunity to be at the forefront of brain research, awake brain surgery. Amazing things are being done and this article was both morbid and personal for me, I have color pictures taken during my surgery. They are amazing. I have actually seen images of my brain. Its a little surreal when you consider that the very thing interpreting the visual image, is the thing that the picture is taken of.

Prior to the surgery there is a meeting and discussion of why awake surgery is important.

"It was Marsh who kept the conversation going during the dinner. He explained the awake craniotomy procedure, saying that for a neurosurgeon, it is a constant temptation to try to remove the entire tumor, but if you go too far, if you remove too much, the consequences can be severe. It may lead to full or partial paralysis of one side of the body or other functional impairments or personality changes. When the patient is awake, this allows the surgeon first of all to determine where the dividing line lies, and second, to observe the consequences of the procedure directly and immediately, and stop before any serious damage is done."

After this the author is given time to think about what is going to happen before appearing at the hospital the next day.

"To my horror, the operation was in progress.

The silence was total. The single focus of attention was a head clamped in a vise in the middle of the room. The upper part of the skull had been removed, and the exposed edge covered in layer after layer of gauze, completely saturated with blood, forming a funnel down into the interior of the cranium. The brain was gently pulsating within. It resembled a small animal in a grotto. Or the meat of an open mussel. Two doctors were bending over the head, each of them moving long, narrow instruments back and forth inside the opening. One nurse was assisting them, another was standing a few yards away, watching. A whispery slurping sound issued from one of the instruments, like the sound produced by the tool a dentist uses to suck away saliva from a patient’s mouth. Next to us was a monitor showing an enlarged image of the brain. In the middle, a pit had been scooped out. In the center of the pit was a white substance, shaped like a cube. The white cube, which appeared to be made of firmer stuff, was rubbery and looked like octopus flesh. I realized that it must be the tumor."

Terrible Beauty of Brain Surgery

What an amazing article. I am in awe of the brain and its functions. I am grateful to have the providers and caretakers that I do. God bless and keep you.

Full Custody

In my journey to become whole, I found the following:

The Write Stuff by author Christy Truitt

He demanded full custody.

The battle over "things" pulled on flesh. A living, breathing, creation in the center of the split. It was the only thing he wanted. The one thing he would not release. 

He knew her life consisted of the line item of the settlement statement. All she knew. Everything she was. 

And he wanted it.

She rolled up her sleeves, took off her earrings, and came out swinging.

You'd think this was a divorce case. A child straddling the growing divide between her parents. About to fall in the middle, his legs unable to stretch anymore.

But no, dear ones. I don't write about a child.

I write about you.

Your identity. Your soul. The very you that is you.

You are the only one who can fight for you. You have sole custody of your choices, actions, words, intentions. Others will come to claim their rights. Woo you with all the other dreams your heart demands only to leave this in the small print, the soft charge. You sign away before you even know to fight.

But fight you must.

No one can separate you from you except...you.

You're worth fighting for.

Now hold my earrings...

 

You are worth it. God is cheering you on. Get to it!

 

 

 

 

 

 

 

 

 

 

 

 

Plans

Plans, goals and ambition do not die off when you are given a life changing medical emergency. In effect your time actually becomes more valued, important, and essential that it become well spent. I measure everything from a standpoint of its impact and value on my life goals, its energy cost, and even its emotional value, i.e. the joy it brings me today. All these are weighed together to help me determine where my life values are at. I wrote earlier about scheduling and activity management. Cognitive Aids

Take that one step further to determine your goals. If your life is not reflecting what you say your values are one of two things has occurred; either your stated values are not your real values, or you have lost focus on what a precious resource the measurement of time is. Time is finite. None of us can buy, build, or bargain for more.

What we can do is spend wisely what we have. This does allow for rest periods. Based on my schedule you can see that much of my day is taken up by recovery and rest periods. I can accept this because that rest allows my brain and body to rebuild and heal. If I do not rest I collapse. That is my reality. Not enough rest and I can do nothing. I breathe, blink, and that is it. No speech, no memory retention, I lose even the ability to perform basic tasks.

As you plan for this next period in your life, make your goals SMART.

Tools for SMART goals

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.

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...

I Am OK (and that is ok)

More of the same.

There it is, the sameness. Not a lot of huge progress. But, then again I guess huge improvement is not to be expected any more.

Confidence is improving, my audiology appointment was key to understanding my sound sensitivity. It didn't change things, but having answers as to why it happens, helps me cope. Going places, large, loud, or filled with people is exhaustive. It terrifies me. My anxiety reaches sky high levels and my mind overworks in an effort to predict and cope with any changes. Yoga and mindfulness have huge benefits to address the heightened state and help build management tools that I can use to regulate. The extra effort, however, is fatiguing.

My physical dexterity has shown some improvement. The confidence helps me move in my restricted sphere more easily, but my neuroplasticity is not improving. I've pretty much settled. This is it. No surprises. No changes. I have even been able to identify my precursors to brain numbness.

There is an order to the warning signs my mind sends. First is an electrical shock firing in the tissue of the overworked portion of my brain. It's attention getting and will get worse if I do not change things immediately. I begin to lose physical fluidity, I stumble and lose my place spatially. Next is a stuttering or disjointed speech. If not addressed it becomes a point of numbness in which I hear and see things but cannot interpret them. I see shapes and colors but could not describe them later if asked. I tell my husband later that I had "the dumb". In the most literal sense this is completely true. I was dumb. I could not speak. Could not engage. If he takes my hand I can follow him but I cannot answer any questions. At times I have had questions asked at this point and helpless sobbing is often the response. I don't know, anything. I don't know my own name when this happens. I am functioning at a very basic level. I breathe, I blink, my heart beats.

Identifying my pattern of mental shutdown helps as I can estimate times and let my support know when and if I need to reset and re-engage. Sometimes you are helpless to change or prevent things, but I do what I can. That's all any of us can do.

God is good. I continue to feel His love and direction. I Am OK. I can accept that. God bless and keep you.