You Must Be Recovered, Right?

Iglittert happened again last night. I was at a party with some fellow writing and publishing friends. One wonderful person asked me to show my book to everyone, as she loved the cover so much.

It’s always interesting the responses I get when people see the title of my book.
“What made you write about traumatic brain injury?” is a pretty common one.
I always respond with “It’s a story about my journey through recovery.”

Last night the person who asked me about it then stated “well you’re talking just fine, so I assume you must be recovered, right?”

Let me tell you, it took every ounce of me to hold back the possessed demon inside me who wanted to fly through my body and chew her face off.

I get it. People are very uneducated and don’t understand TBI and concussions. In their minds, if we are walking and talking we must be fine. Recovered even. But it’s simply not true.

I took a deep breath, smiled, and told her that no, I was still recovering. 

The gentleman on the other side of me then asked how long recovery is expected to take and I explained how no two brain injuries are the same. That there’s no magic formula to help doctors guess how long it should or shouldn’t take our brains to heal. That most people never make a full and complete recovery, we just learn coping mechanisms to help us overcome the deficits.

We then went on to talk about the movie “Concussion” starring Will Smith. He then said to me that concussions usually have a full recovery. I looked at him and said “no, all concussions are brain injuries” – and he actually argued with me.

I read time and time again in my facebook group how survivors feel so isolated and alone. How their friends and family think they must be faking or exaggerating, that there’s no way they can still be dealing with their symptoms. It breaks my heart to hear these stories, I know first hand how it feels.

THIS. THIS is why I wrote my book. To try to help educated those who don’t understand (including many medical professionals) and to raise awareness on the severity of concussions and TBI.

Check out thTBI, brain injury, concussione podcast by Adventures In Brain Injury that I was recently interviewed in to hear more: http://bit.ly/1OiOeXs

 

9 thoughts on “You Must Be Recovered, Right?

  1. I completely agree I get offended when asked “oh so you’re over that now?” or “it’s in the past”.
    I’m work shopping my memoir in my grad class and my classmates said, “well your in class now so you must be fine” or “because your here I know it turns out okay”.
    It is frustrating they cannot see my everyday struggle.

  2. Your vulnerability is what got me hooked on reading your story. Now I’m intrigued and I want to read more.

    Thank you so much for sharing. I feel this year like I’ve had an injury that is non physical trauma related. 4 deaths last year took too much out of me and my brain fog is still pretty heavy.

    I don’t remember things a lot yet I’m acutely aware that I am foggy. I’ve talked about it, but haven’t found the answer yet. I imagine I only feel a morsel of your pain, but I did watch my mom recover from an accident when I was 6 (now 41) where the knobs of a car stereo lodged into her face and skull. It was awful and she still has moments.

    Bless you for sharing your story. Please tell me where to find it.

  3. This is such an important message to get out. I had no idea that most people never fully recover from brain trauma and that they must learn coping mechanisms. Education Education Education. Thank you Amy. A great reminder that education rather than assumptions are needed.

  4. It seems when people don’t understand they may say things not knowing the repercussions their comments have. Educating others is a step to increasing awareness so that they won’t be so quick to judge and will have more compassion.
    Congrats on writing your book.

  5. People that didn’t know me before the TBI don’t know I have it. Its an invisible disability. Iinitially diagnosed as a closed head injury but no Glasgow ratings. The hospital made it harder only telling my family it was a concussion days afterwards while I was still hospitalised.
    They don’tknow I’m texting myself notes during functions to try and help me remember. They don’t know why I can’t remember their name and ask my wife if I’ve had a few too many.
    They don’t see my sleep clock is horribly off and makes it worse. They don’t understand my mood swings either. Nor my headaches from stress etc. They don’t know I have Ephasia and short term memory issues.
    I live out of my cellphone calendar IF…..I remember to save the appointment. I lost different areas of long-term memory also. My brain can’t find new paths to old memories. Unfortunately I am able to remember who I was before….. I can’t get back to that I don’t have the ability now.
    It’s so frustrating that there is no remission and no cure.
    Honestly the only way to explain TBI its like being lost driving without GPS in a city you don’t know and almost every road says “detour under construction”.

  6. Husband a Veteran of many years. He suffered from PTSD and TBI. He passed away in 2012
    BOTH ISSUES of this I can only say that his personality has changed tremendously. Many of our vetetans getting help today which was not during/after VIETNAM ERA. Interesting how our brain works
    Sign off.

  7. People who didn’t know us before don’t realize that we do have TBI. Even family that doesn’t see you every day doesn’t realize the daily issues we invisibly compensate for with our smart phones as our memory tools.
    I still hear ” Oh I forget things all the time too”. They have no idea how hard it is to wake up to that versus growing into that as most people do.

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