Survivor of Brain Injury – What’s in a Word?

January 21, 2011

Survivor of Brain Injury – What’s in a Word?

Survivor, person with a brain injury, brain injured person, brain injury survivor, disabled person, person with a disability, person who experiences brain injury – these are the words often used in reports, publications, and in the media.  But there is an ongoing debate about what’s the best choice.

Advocates in the disability and special needs community have taught us to use “person first” language.  My ears always go on alert when I hear or read about the “tragic victim” or the “wheelchair bound” or the “helpless patient.”  None of these phrases recognize the person.

Some folks disagree with the use of the term survivor for persons with brain injury because it implies there is a cure, such as a cancer survivor.  Others feel it is appropriate because it reflects the difficult struggle of rebuilding one’s life after brain injury.

I am in the process of editing a new workbook called Lost and Found by Barbara Webster which is just filled with coping strategies and supports based on her experience of surviving a brain injury and putting her life back together and moving forward.  But once again, I am asking myself, “What’s the best wording to use for the person who has a brain injury?”  I welcome your thoughts and suggestions.

19 responses to “Survivor of Brain Injury – What’s in a Word?”

  1. Just wish to say your article is as amazing. The clearness in your post is just nice and i can assume you are an expert on this subject. Well with your permission allow me to grab your feed to keep up to date with forthcoming post. Thanks a million and please continue the gratifying work.

  2. William Toprock says:

    Evening.

    I guess I never thought much about it. I was struck in the head with a baseball bat at about 5 years old (late 1940’s).
    About all I remember is that my parents tried to keep me from falling asleep,I was never admitted to a hospital, I guess they were afraid of a concussion. The eventual diagnosis was a “Fractured Skull and a Brain Hemorrhage”, I am still not totally sure just what the damage was but I do know that I have had short term memory problems my entire life, I am now 68 years old. I retired from the Air Force as a Master Sargent after twenty three years, I had dropped out of High School in the Tenth Grade, due to a low attention span, memory problems, etc, but I went back to school after getting out of the service and earned a two year degree (AAS) in General Electronics, Than a BS in
    Social Psychology and one in Human Resources Management. I recently retired from the University of North Dakota, after seventeen years as a Staff Member in the University Operations Center.
    Throughout my life I never really paid much attention to the after effects of the head injury. However, now as I get older and look back on my life I can see were the effects of the injury may have effected my life.

    Sincerely

    William Toprock

  3. Barbara says:

    NESSA, I wonder how long ago your injury occurred. If it has been more than 6 months and your symptoms aren’t easing, it is time to take the next step. It sounds like you have a diagnosis, have you had any neurophychological testing? After a neurophych exam, cognitive therapy or speech and language therapy should be recommended. It also sounds to me, due to the balance issues you mention, that you would benefit from vestibular testing and visual therapy. For professional recommendations, you can call the brain injury association in your state. Hang in there, things will get easier in time.
    Barbara

  4. nessa says:

    Apparently, I have post concussion syndrome, with symptoms that make it hard to go about my life. I’m not sure if some days I am struggling more to be how I was before, or more with dealing with how I am now… Also, I feel guilty for even feeling like I have difficulties, b/c I didn’t have a horrible accident where I had to be in the hospital for days, I can walk (but my balance is HORRIBLE), I can see, talk and hear. All I did was have a slip and fall that I do not remember. So for the most part people are suprised that I cannot drive, think properly,feel like I need a 3rd leg to keep me upright @ times,and just plain don’t feel like ME. And I’m told that I LOOK so NORMAL! Sometimes I have to look in the mirror just to make sure.
    I no longer read my collection of books, or dance around the house with my six year old daughter likeI used to… Those are the things I miss most. I guess I don’t feel like a survior, hero, or any of those kinds of things. I think for now I will call myself a Brain Injured Struggler. 🙂

  5. Barbara says:

    I understand in some formats you cannot use the word “survivor”, as is applying for certain grants.

    I’ve thought and thought but cannot come up with another word or phrase to use in place of “survivor” when targeting that audience. My book is written primarliy for brain injury survivors. While family members and even professionals working with survivors might very well find it helpful, it is the brain injury survivor I want to reach. If you use “persons living with brain injury”, might that not include family members and friends?

    So how else could you rephrase my subtitle: A survivor’s guide for reconstructing a life after brain injury. ?

    Stumped,Barbara

  6. Cargill says:

    Your words are so powerful which really make an impact on the readers. Your composing comes from you spirit just where it should be. I expect to read more from you.

  7. Bob Cluett says:

    Wow! some really good discussion going on about a “word”.

    I’m the President of Lash and Associates, and a “survivor” of a childhood brain injury. I have also struggled with the “word” when talking with other people and I find that I have to give an explanation followed by answering the next few questions that always follow.

    For me it has not been about disclosure, rehabilitation or even recovery but rather understanding and dealing with the effects, consequences and life changes that come with having a brain injury.

    If I could somehow go back and change my life and erase having sufferd a brain injury, I would not do it.

    I have always said and truly believe that God makes up for what we might have lost and gives us gifts that are more precious to hold on to. Something that no one else has or could ever understand. Every child has to be good at something. My childhood was one disaster after another. A classic case of behaviour, attention, memory, wetting the bed till I was 18, speech problems the list just keeps going. I would not be the person I am today.

    When I speak to a “survivor” I start to look for those special gifts and I find that they are always there.

    For me it has always been about why… why am I the way I am, why am I having truble with this or that, why am I tired every afternoon and need a nap, why am I flunking spanish, english, or history?

    Why do I excell in all areas of math, why was I a master of chess at a young age, why can I compose, sing and remember every note to hundreds of songs? Why can I meet someone for the first time and know all about them instantly? Why have I always made and put accomodations on a lot of things in my life?

    Ah… the rest of the story!

    Why? Because when Marilyn and I started Lash and Associates 15 years ago with Ron and Roberta I asked her to give me a few of the books that she had written so I could learn about brain injury. I read “When your Child Goes Back to School after a Brain Injury”. I finished the book and told her she could have interviewed me for this book, that she had described all of the problems I had growing up.

    Marilyn asked me if I had a fall or hit my head when I was younger and I replied that I fell off the back porch and broke a wooded fence with my head. She then asked, how high was the portch? My answer was 3 stories high.

    So you see, for some of us it is not all about surviving, it is about understanding who we were, what we are, who we have become and more importantly putting the pieces together to understand… WHY.

    Bob Cluett
    President Lash & Associates
    Brain Injury Survivor

  8. mp3 indir says:

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  9. Barbara says:

    Wow, all of these thoughtful, insightful responses are litterally bringing tears to my eyes. Thank you! Your touching words reflect the difficulties we all feel and often have trouble expressing. I like brain injury “Hero”, as in a person who has been challenged by a brain injury and is courageously striving to move beyond that injury to create a new life. I don’t know, it doesn’t seem to do justice in conveying the difficulties that shake you to the core in the process and threaten your fundamental sense of being. It is no small miracle that we surive the process!
    Maybe we need a combination of words?
    Barbaa

  10. I am a person who frequently wrestles with words. On the one hand, I don’t care to refer to a person who has experienced a brain injury as a “survivor” because it is not really the brain injury that he or she survived. They survived the event that produced the injury. On the other hand, I agree with others here who have interpreted the term “survivor” as referring to a person who is still hard at it in an attempt to overcome some hardship. I don’t mind feeling as though I am a survivor when I make it through some challenging life circumstance. In the end, if at all possible I avoid using any term that could potentially demean anyone. First names are great in that regard, but in some situations we’ll still need referrants. I tried to write a book one time without “calling people names.” The editors kept demanding it of me, so I eventually starting using the words “currently considered to be ______,” in front of the buzz words (e.g., currently considered to be disabled). The world will continue to keep evolving. Hopefully, there will come a day when none of this will be necessary. Marilyn will help get us there.

  11. I, too, think that “survivor” is an acceptable term for a person with a brain injury. For me, the word conjures up images of strength and perseverance, much as it does for you, Marilyn. Maybe it’s just best to say “people with brain injury,” but, as a writer, I’m always searching for more descriptions of the things I write about.

    And, like Barbara, I see true problems with using the word “mild” to classify some brain injuries. That word does not in any way portray the difficulties and life challenges that many people with such an injury undergo. The word “mild” makes it sound as if a short rest and maybe a couple of aspirins heals the injury and all is well. Kind of like a cold. In some ways, it seems it’s almost better for people to have a worse brain injury that is obvious and quickly diagnosed because, unlike a “mild” TBI, then there’s a “real” reason for the resulting problems. Even the second level in the progression of TBI –mild, moderate, severe–doesn’t sound as serious as it really is. Perhaps it’s time for new words to more accurately describe the levels of TBI?

  12. Hi Barbara!

    My name is Elizabeth Montanaro and I am a “TBI survivor” from Vermont. Your thoughts about words are striking to me because language is something I’ve struggled with since becoming a “survivor.” I’ve felt much of the language surrounding brain injury just isn’t true to the feelings of one enduring a new life since injury.

    Unfortunately, I don’t have the alternative words…I think because it’s unlike any other experience I’ve had-hence, deserving of words I’ve never heard. It almost seems like a whole new language would be warranted.

    As far as the actual term, “survivor,” it at least insinuates there has been a battle for each of us and a higher meaning for our existence and endurance.

  13. Robin Resin says:

    Funny you should mention this now…

    My injury in March 2009 has prevented me from working since then and I have now healed sufficiently and regained enough of my old energy to be looking for a job.

    It is daunting.

    How much to introduce/emphasize the ‘disability’ piece of my description of myself? How much to go into the symptoms I still experience? How much is realistic to take on?

    I’m getting some of the assistance I need, but would like very much to hear from others who have been through this experience and especially those who were successful getting back into the workforce.

    Thank you so much.

  14. TaylorM says:

    I guess I don’t really have a problem with the word “survivor” either, but it does bring up the question – what does it mean to survive, and “who” exactly is it that survived? If one of the results of a brain injury – even a “mild” one – are that you don’t act or feel like the same person you were before the injury, did you really survive? Or did you survive to become a different person? Does surviving include letting go of “who you were” before the injury, while undergoing the slow, tedious and often frustrating process of coming to know and understand this new person, which is now you, that you largely do not know and understand. And at the same time you are going through all this, watching those you love see the same transformation and become afraid, and sometimes angry at you for “not being yourself.” It is a frighteningly lonely experience. One that I haven’t been able to share with anyone, except a few fellow survivors that I know. But we have survived. Part of us survives unchanged by any external markers or actions that don’t seem like “us.” We may watch, inside, while our bodies and minds do things we don’t understand. But we are still there, inside. And those who can see through and have compassion for who we really are, and treat us like ourselves no matter what are the angels in our lives, who truly allow us to “survive.”

  15. Mickey says:

    Hi, I got this link through John Byler, an acquaintance of mine, who I reached out to recently about my husband, Perry and TBI. Perry’s okay with the word “survivor,” because he was dead at the scene of the bicycle accident (off his bike and between the taxi and the pedestrian), and with the help of a good samaritan and EMTs, revived. Maybe he’s a “revivor.” We both detest the word, “mild” when combined with “brain injury” for the reason Barbara gave, and in the case of “recovery,” Barbara, we have to agree — the accident was in 1991 — so, yes, I’ve recovered Perry in body but not in his original spirit and with deficits he has to face constantly. Instead, a so-called recovered individual may “look great” and not be able to relax or work. Tell that to Disability, however. He may have phantom memories — made up stories he tells others about events that didn’t occur. We followed the news of Ms. Giffords’ TBI and were surprised by the later mention of a “set back in her recovery.” Oh, baby — if she’s a revivor, her so-called recovery will take the rest of her life. Good for you that you’re getting the word out — Americans who don’t understand the variables of TBI have the media reiterating old perceptions and how can that help folks with TBI?

  16. John Byler says:

    The word “survivor” resonates with me. It suggests some heroism, which is a quality we don’t often feel from day to day. We have to remind ourselves of the progress we’ve made and our determination to pace ourselves, improve, and then do something with our lives. (Maybe too I’m reminded that the soundtrack to Rocky III was “Eye of the Tiger” by the band Survivor!)

    And I agree with you, Barbara. I balk at the word “mild” too, although certainly when you walk into Spaulding Rehab you can see the more severe cases they’re comparing us to. But there’s nothing mild about having your life turned upside down and struggling every day, looking for a victory.

    And whenever I use the word “recovery” I always (I hope not cynically) say my “so-called” recovery. Certainly I’ve made progress in 5 1/2 years but my life — our lives — are likely irretrievably changed. I think the difference between recovery and rehab is that recovery means returning to your old life and rehab is adjusting to a new life.

    So our lives are now all about adjustment.

    I’m looking forward to your book, Barbara!

  17. Stephen says:

    I suppose survivor is the best word but it still seems not entirely accurate. It may seem to imply that BI is something you walk away from, like a natural disaster. I am a person changed, altered, defined by brain injury. My life is altered because I am altered. I am a PABI, a Person Altered by Brain Injury, and I’m just trying to figure out how to BE in this world again. I am 55 going on 5, and it can all be so terribly confusing. So maybe we need a new word that only us ‘survivors’ can create. But then again, we are a bunch of people adapting to a brain injury, so don’t wait up for a consensus.

    Maybe that’s it, for me anyway. I’m adapting to life following a brain injury.

  18. Shaun Best says:

    Dear Mam:

    I’m very glad that you see the need for the best terminology to be used! It is critical for self-improvement, self-respect, etc., since self-matters. There is a book called Self-Matters, Dr. Phil.

    When you look in the dictionaries before 1940-1980, which most of Americans were raised using these terms in school-who are exectives of some sort or rulers of our markets, the definition of disabled, retarded, handicapped, are all negatively defined, thus the legallized self-fulfilling prophecy or negativism. As a child recovering from a cognitive challenge/brain injury, isn’t challenged/challenges more humane, since we have must have labels? I was restricted in my growth & development by these unfavorable/harsh terms. Therefore, I recognized my recovery optimistically/positive from 1978, i.e., challenges, multiple intelligences, differently abled, etc., vs. pessisitically/negative, i.e., disabled, retarded, handicapped, etc. Let’s also, remember to tske the high/best road.

    Thank you for your continued respect, Mr. Vidal

    Shaun Best, Protector of the Natural State

  19. Barbara says:

    As a survivor, I don’t have a problem with the word survivor but I do have a problem with two other words associated with brain injury. The word “mild” as in mild brain injury, makes me want to scream. It is an oxymoron. A “mild” brain injury survivor may not have the obvious or physical issues that someone with a more severe injury has but if it can change your life, forever, how can that be “mild”?! If you look ok and talk ok but you can’t do what you used to do and as a result of your injury you loose your job, your friends, your spouse, your home and your sense of self, is that “mild”?! We need a better word and a better understanding.

    The second word I have problem with is “recovery”. I want to correct the person speaking every time I hear it. Full recovery rarely happens. I think we should be using words like “healing” or “rehabilitation” and not implying a full return to previous function. It may promote hope, temporarily, but it is misleading. We need to be thinking of brain injuries in terms of long term rehabilitation and more importantly, how to provide that for survivors. In a perfect world, a brain injury survivor would be eligible for some kind of cognitive therapy every year – and it would be covered by insurance. Sustaining a brain injury, receiving acute care, very limited outpatient rehabilitation and being expected to be able to return to work, is like sending a child to kindergarten and expecting them to be able to be ready for the working world. It doesn’t work!

    So call me a survivor but please don’t call my injury “mild” and tell me I’m going to “recover”!
    Barbara

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