Information overkill about brain injury is daunting

After my accident it was 3 months before anyone said I had a brain injury. Even then I thought it was a concussion. But it was a diffuse axonal brain injury, which only 10% of patients awaken from. Many are left in a permanent vegetative state. It was actually classed as a severe traumatic brain injury. So I was confused about the lack of information I was given regarding my injury.

The internet has a wealth of information.

As my partner James and I started seeing private specialists we built a better picture of what my condition was. Maybe I’m a control freak, but I keep reading more and more about it. Doctors advise against doing that too much because you can begin to worry about things you don’t need too. And I do agree with this point. But the temptation is too great.

My brain injury only happened 2 years ago, so I think I’ve made strong progress in that time. But I still don’t want to entertain the idea that this might be as good as it gets. A neurologist said it would probably be within the first 5 years that I might still see improvement, although the 2 year period is the standard. The more articles I read, the more I see that most say recovery happens within 12-24 months. So I’m beginning to panic that this could be it.

Information overload

Why can’t I just do as I’m told?

There’s a reason why they say “ignorance is bliss.” I’m just torturing myself by continually looking for new information. As every brain injury is unique, just because I have a medical term for it, it doesn’t mean I will be a perfect example for what an article claims.

So why is it that although I understand this, I still do it? I mean how stupid can you get? A part of me wants to manage my expectations. Like how a child in a third world country doesn’t expect their parents to buy them expensive, indulgent gifts. They just want love, opportunities, food and water.

But reading about the long-term prognosis does frighten me. So I’m going to try to stop it. What will be will be. I need to concentrate on what I can do to improve my chances. Diet, exercise and tasks to challenge my brain.

Gathering information on brain injury to manage my own expectations

I better appreciate why Doctors don’t want to be drawn on details.

Doctors talk in facts, but there isn’t much that anyone can be certain of when it comes to brain injury. So trying to guess can be a dangerous exercise. And there’s the impact that information can have psychologically, both on the patient and their family.

James has been incredibly supportive, but I know this process has been very difficult for him too. If we had been told all the awful things I have since read as soon as it happened, who knows where we would be. For many loved ones they would question themselves as to if they could go through this for the rest of their lives. And that isn’t a criticism as I don’t know if I could do it. I guess you never know until you are in that position. But it shows that by Doctors not giving you the warts and all version, they are doing the responsible thing.

Tempation of searching for more information on brain injury

So my advice is don’t keep looking for things as I have done. Just focus on yourself and your family. Life is what you make it, don’t waste it.

Do you find yourself looking things up too much? Does the information help you?

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12 Replies to “Information overkill about brain injury is daunting”

  1. To stop improving is to stop time. Our bodies are in a constant state of renewal and regeneration.
    The tricks is to consistently practise the way you want things to be and accepting of your own not-yet-abilities.
    Great stuff in this post.

    1. Thanks Deb, yes we are individuals and our journeys are all unique. If we focus on the right stuff we can make a difference.

  2. WOW, wealth of potential information amongst one another. I also have had a DAI back from 81101, MVA, coma for month and half, chair, abdominal surgery, J tube, traq, etc. Journey throughout life, was 26 when it happened, now 42, but feel young:) Age is all in the head, and LOVE prevails hurt.

  3. The trials and Tribulations of a Brain Injury Recovery

    BY: Rick De Pol

    Surviving
    Car Accident
    Start at 80%
    2% Leaving Morristown Hospital

    2% Leaving J.F.K.

    1% Going to T.L. (transitional living)

    1% Leaving Transitional Living

    2% Getting abdomen fixed (5-10-03)

    2% Memory getting better

    1% eyes w/o eye patch

    2% w/o cane (9/17/02)

    1% Diabetes in better control (not great but better)

    1% Counting carbohydrates with my diabetes

    1% riding my bike

    2% SKIING

    This adds up to 98%, Once a Head Injury happens, it is virtually impossible to obtain the 100% status, that was so easily attainable prior to the Head Injury.

    DEDICATED
    TO MY FAMILY, FLORENCE DE POL, RICHARD DE POL, KATHLEEN GAGG. ALSO, DEDICATED TO MY FRIEND TEDDY GARRAHAN FOR ALL HIS HELP AND SUPPORT.
    ACKNOWLEDGMENTS
    To Mrs. Peterson, for being present through everyday of my recovery process, and also actively supporting my mother through this difficult time. An extra special thanks, goes to my mom through all of this. And also for the fact of buying me ink to print all of the copies of my book for people. And everyone else for his or her support and prayers and there is too many to mention. To Fr. Sean, for being with my family after the accident, and all morning long giving them support. Also, I would like to thank all the other family and friends that were through all of this with me. Also a special thanks to the tri-boro first aid squad and the EMTs. Also, to Fr. Jude and Fr. Michael for their support and prayers. And also an unbelievable special thanks to Dr. Felix Garcia, and Dr. Gandhi who work in the trauma E.R. at Morristown Memorial Hospital and Dr. Malone for all his help at J.F.K BTU. Dr. McCagg, my primary Dr., at Hartwyke at Oaktree, for being there through my thick and thin stages. I’m the type of person that you have to have a great deal of understanding about; Dr. McCagg has that gift of understanding people.

    Contents
    Introduction 5
    Preface 6
    Chapter 1 PG 7 The Call
    Chapter 2 PG 7 Functions of the Brain
    Chapter 3 PG 8, 9 Memory
    Chapter 4 PG 9, 10 Coma
    Chapter 5 PG 11 Stomach Surgery
    Chapter 6 PG 12 Speech
    Chapter 7 PG 12 Dr. Mc Cagg
    Chapter 8 PG 13 Dr.Mott
    Chapter 9 PG 13 T.L. Nurses
    Chapter 10 PG 14 Diabetes
    Chapter 11 PG 15 Aquatics
    Chapter 12 PG 15 Summer Activities
    Chapter 13 PG 16 Outpatient PT
    Chapter 14 PG 17,18 Skiing at Windham
    Chapter 15 PG 18,19 Therapeutic recreation
    Chapter 16 PG 20 Vision
    Chapter 17 PG 20, 21 Everyday Household Chores
    Chapter 18 PG 21, 22 Vocational Work
    Chapter 19 PG 23 Driving

    Introduction
    Let me start by telling you about myself before August 11, 2001
    I was a man of 26 years and loved life and enjoyed making people happy. I graduated from the county college of Morris with an associate’s degree in Psychology, and then I went on to the University of Delaware where I received my bachelors in Psychology.
    Growing up I worked as a lifeguard and a water safety instructor at local lakes and a lifeguard on the ocean during college. I also worked as a server in many restaurants while going to school. Also after college, I was in sales and enjoyed working with people. I always had a fondness in the medical field and was hoping to become a Pharmaceutical Rep. for one of the large companies out there.
    I loved to ski and was a ski instructor. I lived in Colorado for a while where I skied and worked in restaurants. I drove across country and enjoyed the sights on the way. I also loved to play golf, darts, horseshoes, billiards, and mountain bike.
    Now, there has to be an understanding with individuals that sustain a Brain Injury, that your old self may not be available anymore.
    It’s a LIFE conditioning process, or relearning all over again.
    As of August 11, 2001 all this has become slower, not gone

    “Preface”
    The first question your going to ask yourself is why is this person writing this? I’m doing this because it will get things off my chest and it saves a lot of time to just show someone this, instead of explaining it to them. I have had conversations with people about doing this, I thought that it was kind of bad to do this, but others have said it is good to do. The reason why, is because it vents some thoughts and also because it might show how lucky I am to have survived this mishap.
    My accident happened at 12:15 am on Aug.11, 2001 on RT 23 South at the Morse avenue intersection in Butler N.J. I was making a u-turn to go RT 23 north. I went to cross the highway, after I got a midnight snack, to give a friend of mine a ride home. The light turned green and I proceeded across in a 2000 Nissan Altima, and got T-boned by a
    Pickup truck.
    The truck was driving at about 70 M.P.H. My car looked like a V after the accident. At the scene of the accident I was knocked unconscious. The highway got closed down because of the severity of the car accident. My heart stopped twice, once at the scene and then once at the hospital. I am, also lucky that I DIDN’T, have a seatbelt on. Because the car looked like a V, that would’ve meant, if I had a seatbelt on, the truck would’ve crushed me.
    I was on life support for 8 weeks and was in a coma for 6 weeks.
    Dr. Gandhi, Dr. Garcia, and Dr. Fazio work in the trauma ICU at Morristown Hospital where I was taken after the accident. Dr. Garcia said in the trauma ICU, “Let’s try one more time” to bring me back to life, and that’s where I rallied.
    The results of my injuries was that I received TBI=Traumatic Brain Injury. I do remember that I saw Dr.Garcia before I got the abdomen surgery, and he said that I was ready to check out, and I said, “I’m not a hotel” “There isn’t any checking out here”.
    Dr. Gondhi is leaving to be the director of a trauma center in Waco T.X. The last time that I will see him is when I get abdomen surgery.
    Fifteen doctors said I wasn’t going to live immediately after the accident, and TADA, here I am, writing my biography. Earl Charles (the police officer that was at the accident scene, also was a friend of mine), I’m sorry for saying, that I wish I were dead, I’m sorry. It stinks that this happened to me, but I’m glad for the fact that everything was internal, and I have full functionality of all my body parts, and most of all, I’m able to ski again (yea-haw). I did transition from Morristown to J.F.K., on 9-11-01. Another lucky thing about the accident is that it happened exactly, one month before, the 9-11, incident. I got moved from Morristown to J.F.K, because they thought that they would get a large influx of patients because of the terrorist attacks on the World Trade Center. But, they didn’t get any patients.
    The injury was located on my frontal lobe. I received a term called shearing. Shearing, is a violent twist of the connections, of the neurons in your head?
    At the scene of the accident, the other driver complained of chest pain from his seatbelt. I on the other hand it was much different. A helicopter didn’t take me, but some do. Every time you hear a helicopter the doctor’s beepers go off, and they go running because it’s someone coming into the trauma center. They didn’t fly me by helicopter, because it was quicker to take the ambulance, than to wait for the helicopter.
    I’m very lucky, that everything was internal because, I have seen others with external scars. I always responded to this nurse Laura, and never to the doctors. The doctors would come into the room, and I would be non-responsive:)the good thing that happened about the accident, even though it stinks, is that my attitude hasn’t changed a bit; I’m still a jokester. The timeline of this, is that I had to relearn, all of my activities of daily living over again, they are termed the ADLs= Activities of Daily Living. I had to relearn how to work on my balance, to be able to walk again, my speech, to speak clearly again, and then also my daily intake of food because of my diabetes. I can’t over/under eat because it will affect my blood sugar.

    1. Thanks Rick, that’s quite a journey! You’ve come so far and although you feel that you aren’t quite back to where you were you clearly have grown in other ways.

  4. Thanks Michelle, I totally can relate to what you say in your blog, I am 7 months into recovery from a craniotomy to remove a brain tumour, I still have a tumour remaining. I am constantly looking for information, reading books, blogs, and online information. I know everyone is different recovering from a brain injury, we all recover at different rates, our minds work differently, past experiences and the support we have all contribute to recovery. I am constantly looking to find the ‘fix’ to sort this limbo I am in and make it go away. My husband is calm and a great support, I ramble on and on about different information to him, he said to me’ you are tormenting yourself, constantly craving information that your poorly brain can’t process, it’s not helping you’.

    That became even more apparent with my last neuropsychologist visit, when I was told, I need to accept what has happened and where I am, being okay with this situation gives you a foundation to build on, otherwise you are constantly battling against yourself looking for the answers.
    I am just starting to get this, but it doesn’t feel okay, I get that, I am stressing myself out, and need to do one day at a time. That’s not easy when you used to live a fast paced and planned life.
    Maybe we are too hard on ourselves? It’s time to be kind too ourselves, and stop and take it all in. Maybe I will never be okay with this, it’s changed my life, but I can slowly take the help that is offered, look for the kindness and hope in my life and be grateful.
    Information is good, but information overload is not, be kind to your poorly brains, we don’t have all the answers to hand, but slowly, slowly we have to love our new selfs.

    1. It’s so hard isn’t it. We so want to do everything within our power to improve things, but when it comes to your brain it’s just not that simple. So yes be kind to yourself 🙂

  5. I think the constant search for information takes over every aspect of our lives. In the early stages of my recovery I was so aware of the negative things that can happen to brain injury survivors that it played on my mind for more than it should. I try to banish the negativity by reminding myself on how far I have come and the positives that are in my life at the moment.

    1. Yes I think that’s what we have to keep in mind. Humans have a habit of pushing themselves and always looking ahead, but the journey is important too.

  6. Just that ..for me it’s been more than 20y, and keep learning/understanding and hope improving a little more, the most important thing was to understand. Searched a lot the web and it was so so useful and important. But never give up, yes, everyone says it is time not to think about it, but do not know if that is possible.But there is a time when you say, I did the best i could, and you realize you have your own strategies and have to live every moment gratefully, as your new self.

    1. We all want to move forward, I guess I just need to find the balance between worrying what the future looks like, and living in the now.

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