TBI – Survivors, Caregivers, Family, and Friends

Awareness: TBI Survivor Advocate

by

Miki Mashburn-Bailey

presented by

Donna O’Donnell Figurski

Girl Blogger cartoon_picture_of_girl_writingIt has been twenty years since my husband’s traumatic brain injury (TBI). Unawareness has been our enemy and hurt us tremendously. Awareness has found its place in our home just this past year, and it has brought along with it forgiveness, acceptance, and understanding.

Awareness has turned our life around. And, everyone who suffers from a TBI deserves to understand this life he or she lives. So obviously, awareness is important to me. It has become my passion. I ask you to help me prevent further damage by making the world aware. Your response could save a life – a marriage – a family.Miki Mashburn-Bailey 1

My husband was hit in the head by a brake drum that had flown off an eighteen-wheeler. The brake drum was traveling at highway speed. It wasn’t actually a “car accident,” but it was an unnecessary and unfortunate accident. (It’s for a reason such as this that you can receive a ticket for “failure to maintain your vehicle.”) My husband’s car veered to the left. The barrier between the highway lanes slowed him to a stop, as he was combative and lost all control of his being. An ambulance just happened to be driving by soon after, and the EMS (Emergency Medical Services) team just happened to look down into my husband’s vehicle. They saw him and took immediate action.

I am thankful for this EMS team because they helped save my husband’s life. They responded quickly and effectively, and my husband was rushed to the nearest trauma center. The team there responded quickly, and the surgeon was able to do what was necessary to prevent further damage. This man and the trauma center team saved my husband’s life. I am forever grateful to them. They did their jobs, and they did them well. Had the EMS team not responded in the manner they did, it would’ve made the trauma center’s job more difficult.

Miki Mashburn-Bailey and Jay Bailey 3My husband survived an incident he should not have. He improved much sooner than expected. He recovered miraculously and was discharged earlier than expected. I am thankful to everyone. They did their jobs well.
 HOWEVER, there was still a job that was necessary. There was still work to do. There was still much-needed therapy. There was still much-needed counseling.
 A life was saved, but it was forever changed, and no one was there to help make sense of it. No one was there to guide my husband and me to the next step. No one was there to warn of the subtle changes that have huge impacts. No one was there to enlighten and give insight as to what to expect next. 
EMS did a great job and sent us on to the next step – the trauma center. The trauma center did a great job and sent my husband on into surgery. The surgeon did a great job.

But, the only place left to pass my husband on to was home. “No more treatment necessary” written on discharge papers means “There is no more left for us to do on our end,” but, to the sufferer of a TBI, it reads as, “You’re fine. You will heal right up!”
 My husband and I go home. We expect things to be different. We adjust. We assume time is all that’s needed. Time marches on, and things don’t improve, or we begin to notice this and that here and there. By the time we recognize things aren’t healing cognitively as well as they are physically, we go to a doctor confused and try to communicate our concerns. My husband is brushed off because he “looks fine.”

Trauma centers need to have a “TBI Survivor Advocate” to hold the survivor’s hand into the next step of the TBI journey – not to hand out written material that will be lost in all of the other paperwork given at discharge. TBI Survivor Advocates would sit down with survivors and their families and/or friends and help them understand that, while EMS and the hospital saved the survivors’ lives, there are others who will help survivors LIVE their lives. TBI Survivor Advocates could direct and guide survivors to find therapists and counseling that will help transition and adjustment to their “new normal.” 
A disservice was done to my husband – to his future, to the company he worked for, to our relationship, and to our family.
 We were denied effective help and expected to carry on, due to my husband’s “miraculous” physical healing. Because of that, the cognitive damage that affected his being never got the attention or therapy it desperately needed.

Awareness of the reality of TBI as often being an invisible disability is vital in the health of the world we all live in. TBI is a thief in the night and has no prejudice. It can happen to anyone of any status. Please help me make others aware. Miki Mashburn-Bailey 4We can be that hand that guides others to their next steps in their journeys. The world we live in is full of those who have influence. A difference CAN be made in the way a brain-injured individual adjusts to his or her new life. All it takes is ONE person to make a difference. The more we help one another, the better our world becomes.

Thank you, Miki Mashburn-Bailey.

Disclaimer:
Any views and opinions of the Guest Blogger are purely his/her own.

(Clip Art compliments of Bing.)

(Photos compliments of Miki Mashburn Bailey)

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Comments on: "SPEAK OUT! . . . . . . . . . . . . . . . . . Guest Blogger: Miki Mashburn-Bailey “Awareness: TBI Survivor Advocate”" (10)

  1. Robert Griffiths. said:

    I understand completely!! I suffered a TBI October of 99. Flatlined 4x on the way to the hospital. If anyone wants to understand what it’s like to experience a TBI. Chew up a bunch of bubblegum then put it in your hair. Then put on some mittens. Try to get the gum out. Yep brutal!!!

    Like

  2. scott bellinger said:

    i suffered a frontal lobe TBI 29 years ago when i was 11 so i know what you are going through . i don’t remember a lot of my childhood but i do remember being at my Dr’s and my mom was concerned about my personality change . i remember hearing her say how i was different after the accident .i can remember the sudden mood swings ,agitation , violent out bursts and all the dr said was that i seemed fine , did some motor skills tests and sent us on our way . he was a great Dr. in that he saved my life but surviving the accident well that was the easy part. i am 49 now and i still have issues than never have gone away . i am in the process of trying to find a therapist or phycoligist that deals with TBI survivors . i still have the anger/agitation ,memory and control issues . i lead a normal life but i still have these nagging issues all these years later .

    Like

    • Scott, thank you for telling us your story. Twenty-nine years ago, doctors knew even less than they now know about brain injury. BI is a learning process. Hopefully, by sharing stories more people will become more aware about brain injury and understand it a little better.

      Thanks for reading and commenting on my blog and helping to raise awareness of brain injury – one view at a time.

      Donna O’Donnell Figurski
      survivingtraumaticbraininjury.com
      donnaodonnellfigurski.wordpress.com

      Like

  3. I agree completely! The same thing happened to me. How can we educate the medical field to realize that we need help beyond discharge from our initial, physical, injury?

    Like

    • Hi Pam.

      That’s a tough one. I think it is not so much the medical field that needs the learning, but the insurance companies that need it.

      Unfortunately, the dollar sign gets in the way. Heck many folks are released from the hospital way before they should be. My husband was one of them.

      They sent him home with a hole in his stomach and I was told to pour his food directly into his stomach. Now how safe is that? That was recipes for disaster. An open wound directly to the stomach????? Come on! But, by sending David home, the insurance company was saving hospital fees, etc. I could go on, but you get the point.

      Anyhow, I am hoping to raise awareness through my blog and my radio show, “Another Fork in the Road,” on the Brain Injury Radio. You help out when you start conversations like this one, and share my blog posts. We each can do what we each can do.

      Thanks for reading and commenting on my blog and helping to raise awareness of brain injury – one view at a time.

      Donna O’Donnell Figurski
      survivingtraumaticbraininjury.com
      donnaodonnellfigurski.wordpress.com

      Like

  4. My daughter suffered a TBI less than 12 hours after she was born, followed by 2 strokes.
    As a healthcare professional, I do understand accidents may happen; as her mother, 16 years just passed and I’m still grieving, not to mention the amount of anger I have for the nurse who dropped her in the nursery!
    After the force blunt trauma occurred, my daughter was wrapped back up in her blanket, and returned to her crib in the hospital nursery.
    No one had a clue as to what happened when shift change rolled around.
    All the new shift knew was my daughter was blue, lethargic, and her pupils fixed and dilated.
    After 2 hours of cpr, I was finally notified. Not that my daughter had been injured, while in the care of the nursing staff, but that something happened, and she needed to be careflighted out for an emergency situation.
    I had just been given a sedative for a tubal ligation.
    My brain was foggy, I was 20, and had absolutely zero medical training at that point.
    When the careflight arrived, she was too unstable to be transported by them. So off my dying newborn went by ambulance.
    First stop, a hospital affiliated with the hospital she was born in. Then, transferred again, finally to Children’s!
    By then, my daughter had suffered her second stroke bc of her brain swelling and the massive amount of blood that remained in her skull.
    I will forever be grateful for the God sent neurosurgeon who saved my daughters life!
    After undergoing a craniotomy in her occipital lobe, to release pressure from all blood that had accumulated all day long, finally she was stable enough for surgery.
    Her God sent neurosurgeon, removed her right frontal & temporal lobe of her brain, as well as her bone flap, to eliminate any chances of pressure and give room for her brain to swell if needed.
    2% chance of her making it through the night. My sweet miracle MADE IT!!
    Due to the extensive damage of the TBI & 2 strokes, again little to slim chances of any survival. I was even advised to pull the plug on her….
    I was devastated!
    I prayed hard day and night. The Good Lord help make make the best decision of my life; I refused to give up on her!
    Her team of neurosurgeons consisted of 4. Every single one of them were against my decision. I was told first, she would not survive, then when she did, she would be in nothing more the a vegetative state. She wld never know my name, she wld only lay in bed, requiring 24/7 nursing care.
    Let me tell you, THE GOOD LORD HAS BIG PLANS FOR MY DAUGHTER!!
    She beat the odds!
    Now, the depressing part. Due to the extensive damage, and significant jolt to her brain, it was a global affect. Not just the area that was removed, and the two strokes, her entire brain has been traumatized. Her physical age is 16, but her mentality is a 7-young 8 year old. Her reading level is at 2nd grade level and math skills a 3rd grade level.
    Based on her recent neuropsychological evaluation, she will not advance intellectually anymore than she already has.
    The specialist said, my daughters brain had the chance to re-wire, but it did not.
    Everything that controls the area which was removed, is forever gone.
    The very frustrating and sad part was, after she was finally released from the hospital, the staff was like ” here’s your baby. She’s gonna have a lot of deficits. Good luck”.
    Now at 16 years old, the deficits have been more noticeable for the last year.
    No impulse control, no filter on her mouth, severe, and I mean severe behavioral issues! Physically aggressive.
    All I can Say is it’s been a long 16 years.

    I try to remain optimistic, bc I already know The Good Lord blessed me with a miracle!
    But perhaps if I had some guidance and direction to ensure the best life my daughter can possibly have, would be a huge blessing!

    #PREVENTIONISTHEKEY#

    God Bless each and every one of you! Always remember, you’re stronger than you believe!

    Like

    • Brandie,
      I was mesmerized as I read your heart-wrenching, yet loving story about your daughter. As I read, I saw your hope and your support of your daughter in your every word. I also felt your suppressed emotions and your anguish. Such a joyous occasion as birthing a child should never have such a drastic outcome as this. Thank you for sharing your story here in the comment section.

      I would love for you to do a Caregivers SPEAK OUT! interview. You can find the link in the right sidebar. I would also love to publish this account in “Faces of Brain Injury.”

      Please contact me at neelyf@aol.com for more information.

      Thanks for reading and commenting on my blog and helping to raise awareness of brain injury – one view at a time.

      Donna O’Donnell Figurski
      survivingtraumaticbraininjury.com
      donnaodonnellfigurski.wordpress.com

      Like

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