My Brain is Not Always My Buddy

Hang Tight. This is not about alcoholics dementia or my grief.

This is about why, every now and again,  I can not write a post. 

This is about Traumatic Brain Injuries.

I have struggled of late. Not only with grief, not only with how to move forward with memory of death on my heels, but with my Traumatic Brain Injury; TBI.

I have had 2 serious head injuries in my life. The last one, caused by a fall on my front porch,  really set me back. I was in the middle of planning a literary symposium many years ago, when I suffered the second injury.  It was not as dramatic as the first injury and I had things to get done.

I had a broken nose, a chipped tooth, a very deep head wound on my forehead and bruises. I had layer upon layer of  stitches on my forehead. I am grateful that there was a doc on the emergency  room floor who had done a stint with a plastic surgeon.

My primary concern at the time was recovering enough to not be a mess at the symposium. I also wanted to get the MASSIVE blood stain off the porch. 

The doctors fixed my nose. The dentist fixed my tooth and I decided to just avoid the blood stain. It made me queasy; so did concrete in general. Concrete still makes me queasy.

The head doc said,

“Don’t do much of anything for a few months and get more sleep. “ 

Got it. No hiking. Get more than 5 hours sleep. fine. 

I had one month to the symposium I was planning with  a friend. I did not have time to hike. 

In the next 4 weeks, I read several books written by each of the  writers sitting on the panel. I helped find money to fund the thing.

I thought I WAS taking it easy. 

The docs were very impressed with my  physical recovery: miraculous!

I am well versed in the use of herbs and homeopathic remedies. I had zero bruising after they fixed my nose. No miracle; ancient healing medicine. 

The symposium came and went successfully. 

And then

I was toast. 

I was saying things like, “ Please put your shoes back in the microwave.” I struggled to find words. I  could not for the life of me make a grocery list or follow a recipe. I was getting lost; in my neighborhood.  When there was even the tiniest bit of background noise, say the refrigerator, I could not think and would grow terribly anxious.  I was emotional and anxious all the time; headaches did not help.

By far the worst thing: I could not read or write. 

I was a total mess. I went back to the doctors.

It turns out they meant Don’t Do Anything.

Do not read 8+ books in 4 weeks, do not raise money, do not strategize. They meant sleep about 10 hours a day. They   were stunned when I told them I had another  serious head injury at 13. The docs who attended me during the first injury said it was a miracle I lived through it.  

Oops. Turns out they needed to know that earlier.

 Two other concussions were of import also. After several consultations another MRI and CAT scan and bazillions of questions I could barely answer; I learned that I was living with a TBI. 

The kicker was when a doc said,

“It is a REALLY good thing you started with a very high IQ.

You will be fine losing a few percentage points.”

Nice.

 I burst into tears, not my usual MO but unavoidable emotional expression comes with the TBI territory. 

This doc was clueless.  I was a mess. 

What is funny about this is that  my TBI gave me some insight into my mother’s dementia

when, years later, I needed to care for her.

When she could not think of a word, or would get lost in the neighborhood,

I found I had more compassion for her than if I was not living with a TBI.

Blessings abound.   Yes?

I have had the great good  fortune to have found an amazing, gifted woman blogger who writes from personal experience about living with a TBI. NJgirl’s Blog How to live with a TBI has taught me so much about my life. 

More information is being learned about TBI’s due to the high number of brain injuries being suffered by our soldiers fighting in the wars we are waging. The numbers are staggering and their sacrifice immense:

How many U.S. soldiers have TBI?

The exact number is hard to pinpoint. The Pentagon says about 115,000 soldiers have mTBI, while the RAND Corporation study Invisible Wounds of War suggests the much higher number of 400,000 total TBIs, the majority of which are mild.
Read more: http://www.pbs.org/wgbh/pages/frontline/traumatic-brain-injury/etc/faqs.html#ixzz1k8LKq3ew

Here is a wonderfully written post about what we TBI folks want our loved ones to know about us.  

If I am not posting chances are great that lack of sleep, or stress

is interfering with my ability to   gather my thoughts.

I need to go easy. 

THAT is one hard lesson to learn.

Thank you NJGIRL;  You are Heaven sent.

My brain thanks you. 

As  NJ GIRL says,

‘until we meet again deep breath in and breathe’

 Jen

njgirl’s Blog How to live with a TBI

My brain…

is tired.

I have copy pasted this helpful and important post here. 


JAN

8

Lost & Found: What Brain Injury Survivors Want You to Know

Posted on January 8, 2012 by njgirl197329

Lost & Found: What Brain Injury Survivors Want You to Know

Barbara J. Webster, Lash & Associates

I need a lot more rest than I used to. I’m not being lazy. I get physical fatigue as well as a “brain fatigue.” It is very difficult and tiring for my brain to think, process, and organize. Fatigue makes it even harder to think.

My stamina fluctuates, even though I may look good or “all better” on the outside. Cognition is a fragile function for a brain injury survivor. Some days are better than others. Pushing too hard usually leads to setbacks, sometimes to illness.

Brain injury rehabilitation takes a very long time; it is usually measured in years. It continues long after formal rehabilitation has ended. Please resist expecting me to be who I was, even though I look better.

I am not being difficult if I resist social situations. Crowds, confusion, and loud sounds quickly overload my brain, it doesn’t filter sounds as well as it used to. Limiting my exposure is a coping strategy, not a behavioral problem.

If there is more than one person talking, I may seem uninterested in the conversation. That is because I have trouble following all the different “lines” of discussion. It is exhausting to keep trying to piece it all together. I’m not dumb or rude; my brain is getting overloaded!

If we are talking and I tell you that I need to stop, I need to stop NOW! And it is not because I’m avoiding the subject, it’s just that I need time to process our discussion and “take a break” from all the thinking. Later I will be able to rejoin the conversation and really be present for the subject and for you.

Try to notice the circumstances if a behavior problem arises. “Behavior problems” are often an indication of my inability to cope with a specific situation and not a mental health issue. I may be frustrated, in pain, overtired or there may be too much confusion or noise for my brain to filter.

Patience is the best gift you can give me. It allows me to work deliberately and at my own pace, allowing me to rebuild pathways in my brain. Rushing and multi-tasking inhibit cognition.

Please listen to me with patience. Try not to interrupt. Allow me to find my words and follow my thoughts. It will help me rebuild my language skills.

Please have patience with my memory. Know that not remembering does not mean that I don’t care.

Please don’t be condescending or talk to me like I am a child. I’m not stupid, my brain is injured and it doesn’t work as well as it used to. Try to think of me as if my brain were in a cast.

If I seem “rigid,” needing to do tasks the same way all the time; it is because I am retraining my brain. It’s like learning main roads before you can learn the shortcuts. Repeating tasks in the same sequence is a rehabilitation strategy.

If I seem “stuck,” my brain may be stuck in the processing of information. Coaching me, suggesting other options or asking what you can do to help may help me figure it out. Taking over and doing it for me will not be constructive and it will make me feel inadequate. (It may also be an indication that I need to take a break.)

You may not be able to help me do something if helping requires me to frequently interrupt what I am doing to give you directives. I work best on my own, one step at a time and at my own pace.

If I repeat actions, like checking to see if the doors are locked or the stove is turned off, it may seem like I have OCD — obsessive-compulsive disorder — but I may not. It may be that I am having trouble registering what I am doing in my brain. Repetitions enhance memory. (It can also be a cue that I need to stop and rest.)

If I seem sensitive, it could be emotional lability as a result of the injury or it may be a reflection of the extraordinary effort it takes to do things now. Tasks that used to feel “automatic” and take minimal effort, now take much longer, require the implementation of numerous strategies and are huge accomplishments for me

We need cheerleaders now, as we start over, just like children do when they are growing up. Please help me and encourage all efforts. Please don’t be negative or critical. I am doing the best I can.

Don’t confuse Hope for Denial. We are learning more and more about the amazing brain and there are remarkable stories about healing in the news every day. No one can know for certain what our potential is. We need Hope to be able to employ the many, many coping mechanisms, accommodations and strategies needed to navigate our new lives. Everything single thing in our lives is extraordinarily difficult for us now. It would be easy to give up without Hope.

~ by Step On a Crack on January 21, 2012.

23 Responses to “My Brain is Not Always My Buddy”

  1. You must be the strongest woman I know next to my mother-in-law. What a journey your life is and you show such grace. Thank you for baring your soul, yet again, for us to love you even more. Jen, you are a teacher and warrior….of peace and grace! xo

    Like

    • Debby, thank you for the kindness and support. The thing is, living with a TBI is not something I do well and it was brought on by accidents. I do not feel good about my Brain and there is grief in living with the limitations. Gradually I am learning to live WITH my TBI not in Spite of my TBI.

      NJGIRL is one of my Blog hero’s. Her outreach is so darn helpful AND she does it WITH a TBI! SHE is a wonder.

      NJGIRL is like you: she lights the way and makes the Walk easier.

      Blessings to you both. My lights in darkness!

      XO. Jen

      Like

  2. Im so proud of you. It took alot of courage to write this post… You are very couragous and I am honored to know u.. I will help you in anyway I can through ur journey.. 🙂 Kudos Jen

    Like

    • HEY! YOU are the one who deserves KUDOS! YOU are an amazing woman and your blog and Facebook support group will reach SO many people who might not otherwise get the info they need to get help and make sense of life with a TBI!

      You are one of my Heros.

      Jen

      Like

  3. Thank you for sharing your insight into and experience with TBI. I am an RN who often treats TBI patients. I want to share this post with my colleagues – some of whom say “well, he could do it if he wanted to.” That makes me want to scream!
    Another book of interest is My Stroke of Insight by …..(can’t remember!). She was a neuroanatomist who suffered a CVA secondary to an AVM. She is quite eloquent and was blessed with a mother who understood rest and nutrition.
    As an aside – I once had a beloved cat named Tibby (for “TBI”). I got her while I was working as a Rehab nurse. She was a barn kitten who, one day, couldn’t walk so well and tilted her head; we presumed she may have been kicked by a horse. She lived with me many years but always a bit more shy and retiring than my other cats.
    Thanks again for opening your heart to us.

    Like

  4. Thank you for being here!

    Please share the post and PLEASE, more importantly, share NJGIRL”S blog.

    Her blog is devoted to living with a TBI. It is amazing and real. Her post today may resonate with you as an RN

    http://njgirl197329.wordpress.com/

    I loved My Stroke of Insight. It is a fantastic book.

    I love the story of Tibby. You have a Large Heart!

    Thank you for stopping by and PLEASE visit NJGIRL! (The links are above)

    Like

  5. Jen you hooked me up with our NJ girl, right? Her life story is amazing. Almost as amazing as you. Smart women run in packs they say 😉

    Honey, you are the strongest woman i know! I can’ t think of anyone who has been through as much as you and is still alive! Fucking “A”! You are stunning, you are giving, you are awesome, AND for that, you deserve a WEE bit o’rest? YES?

    I hope above all else, you Will Take Care of You. Go ahead and read books, and write poetry, OK? Have tea … one glass of something spiritual? Watch the sun rise, the sun set, and tell me about it.

    OK?

    Love, mel.

    Like

    • YES! Isn’t NJ GIRL remarkable! She is a Warrior to be sure.

      I have been doing that really shallow breath technique… what is it called?

      Hyperventilating! thats it! Not so much working for me…

      yikes…

      XO Jen

      Like

  6. Jen, thank you for the courage to help us better understand things we haven’t experienced! I think when we hear another person’s story we have the chance to imagine what it would be like to live that story ourselves. if we can truly imagine that, maybe we have a better chance of creating a kinder, gentler, safer world where we can each be the whole of ourselves.

    I really appreciate the other people and resources you suggested too. Once again you’re creating a path and inviting us to follow. I’m grateful.

    Like

  7. Jen– Thank you for opening your life to us. You have so much to share. I am privileged to be among those who benefit from the path you’ve walked. TBI is yet another topic that I had no exposure to.

    My respect for you has increased yet again. To be able to write like you do and to be able to show such courage in the face of grief, suffering and trauma is nothing short of amazing. You are a testimony to strong women and God’s grace!

    Like

  8. You have been through so much and have come out on top of it all, whether you realize it or not!!! xoxoxo
    Girl Power!!
    Andrea

    Like

  9. Jen I cannot believe I am trying to think if and when my husband ever had a brain injury. I think he has not, but wow. This describes him to a T. I’m thinking he needs to see a dr. Hmm.
    Thanks for this important information. Rest. We will miss you, but the wait will make us love you more when you are back.

    Oh, another great book– Don’t Leave Me This Way!: Or You’ll Be Sorry When I Get Back.
    Loved My Stroke of Insight, too, but the above is more entertaining.

    Like

    • Dear Kathy,

      Wow. I suggest you check out http://njgirl197329.wordpress.com/.

      So many TBI’s go undetected. You can find yourself with a TBI after a lifetime of SMALL head injuries. I did not even think of mentioning the other ‘head bumps’ when I went to the emergency room. I often wonder if my husband, God Bless him, has a head injury and I know it is just what my sister calls ‘a man coma’. IF it is at all possible your husband might have a TBI it is good to know. A man coma is just what it is. That is why WE are so darn organized, right?

      I WILL read the book, thank you!

      XO Jen

      Like

      • I kept thinking and then I did remember a time when he was in a wreck and banged his head really hard on something–had to have several stiches and shaved forelock–wore a driver cap for quite a while. 😉 Anyway, I am paying closer attention and getting more info. His job environment would can him if they could, so gotta step carefully . . . So grateful to you to be informed, even to have a clue to what might be going on.
        I wonder how much age-related dementia is really from past injury. I really was beginning to think my husband could be losing it, since we are in our sixties. Maybe not, eh?

        Like

      • Kathy. OH BOY!! It is worth checking out the Blog about TBI. I have had a similar issue: IF they put TBI on paper then I could be shout out of so many lines of work. I will return to the work force when the little (taller than me) chick flies the coop. I opted to NOT have the diagnosis actually put down on paper. I am VERY fortunate to have several docs who helped me through this maze. Health Care is what it is. I have still gotten the help I needed, it has just been trickier. I hope you DO visit NJGIRL’s blog and take a look

        I have learned so much since my 2nd head injury about how to live with one. IF I follow the guidelines I am OK. If I do not; I am toast. Diet plays a role, sleep, NO multitasking on and on and on. There is a great book called: Mild Traumatic Brain Injury Workbook

        Workbook for adults, veterans and families on mild traumatic brain injury and concussion symptoms with strategies and exercises for improving attention, memory and executive functions.

        This book helped me quite a bit about a year out once I had gotten some other help. YES! Dementia CAN grow out of brain injuries.

        I hope this is helpful and not scary. Once I finally admitted that my life had changed and I needed to accept it, things have gotten so much better.

        Again, I hope this is helpful. There is a lot of info on the web about TBI now. I can’t hurt to take a look at it and ponder. I have found the strategies for living with a TBI to be a God Send. And I DO mean God.

        Sometimes I look at it this way: My TBI forces me to slow down, something God had been encouraging for a LONG time. things happen. There is always a gift. Right?

        XO Jen

        Like

      • Yes. Always a reason to be thankful.
        It’s not too bad, here, but noticeable to me. I think reading a lot will help a lot. Somebody likes to read self to sleep every night, so thanks for the great book suggestion, which I definitely will follow up on. And I will educate myself at njg, so I can base my thinking on fact instead of this fear that threatens me.
        Thanks, so much, for all you have done with this one post. Yes, a God send, and I do mean God, too. Bless you, and although I am so sorry our Jen has to suffer this, I am so glad she is such a generous, sharing one who has reached out to others . . . ❤

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      • Yes God. That is 100% true. I hope the book lead is helpful. You know, with a TBI knowledge really is power. I struggled SO much and docs say “live with it”. I started looking into myself and saw an alternative doc and WOW! there are things that make a HUGE difference.

        NJ GIRL’s website is amazing and she is an excellent resource.

        I really do believe that each struggle we have has a Gift in it. I have had to slow down because of my TBI both literally and figuratively. I NEEDED that. Maybe this old TBI can be a gift to you also!

        that makes me happy. XO Jen

        Like

  10. Your blog touches me each and everytime I read what you have written. You have overcome so much in your life and your strength is encouraging to me. Thank you for sharing your life with all of your fellow bloggers.

    Judy

    Like

    • Dear Judy,

      Thank you for putting a face on your grief. My trials and tribulations pale in comparison. I think of you often; daily actually. You are a real Hero and an inspiration. Your words mean the world to me.

      thank you so much and TAKE CARE!

      XO Jen

      Like

  11. […] TBI […]

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