Brain Injury

A brain injury is a lifelong battle.  It’s not something that you just “get over” or recover from within a few months – or  years – or ever.  If you’re lucky enough to have a brain injury you are forever changed.  FOREVER.  I had a massive brain injury.  Some moron in my life that didn’t understand why I was still sick a year later said to a friend of mine “is she trying hard enough?”  Someone also said to me once “you should be happy, you were almost dead a year ago.”  I cannot begin to explain the stupidity of these comments.  Stupid is not even the word for them.  The people who made these comments are no longer in my life (thank God) so I feel ok about calling those comments stupid.  🙂  That’s what they are.  They are extremely, extremely, extremely insensitive and stupid.  Anyone that would think even for a second that I’m not trying is out of their mind.  But, nobody knows anything about stroke, especially strokes in young people.  Don’t think that your doctors know anything about strokes – they don’t.  The lack of knowledge about strokes is NO excuse for being so insensitive though.  Learn how to act and what to say.

Categories: Brain stuff, Health, Recovery, Stroke stuff

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21 replies

  1. amen….Amy!!

  2. Even the ASA, NSA and WSO know nothing about strokes. I’d trust that microbe on Mars before anyone on Earth.

  3. Yesterday was my daughter’s one-year anniversary of her stroke. I wanted to look on it as a day of celebration to recognize all that she has achieved over the past year. She didn’t feel the same way. To her it was a day to mark the day she changed. The day she became a different person, a day that she lost a part (or parts) of who she was which she can never reclaim.

    It is so hard to know what to say to a stroke survivor, and I think even harder to know what to say to a young survivor. My daughter was 21 when she had her stroke. I can assure you I almost always say the WRONG thing. But trust me it isn’t intentional.

    I am so proud of my daughter as I am sure your family is of you — but it is hard, very hard, to find the right way to express that.

    I appreciate your candid to the point thoughts and advice and all
    pointers are welcome 🙂

    Stay strong.


  4. I used to work with someone who would explain something poorly, then say – if you can believe this – “I don’t know why you find this so confusing.”

    I think we could make a long list of what NOT to say, but the “what it’s okay to say” list is harder to come up with. I suggest saying anything that’s clear AND encouraging, but not condescending.

  5. One thing I have done with z is let him feel. Let him grieve. I need that so he sure as he does. Forever changed. Forever impacted. And given the gift of a new outlook on life, the human body, and compassion for people I never would have been able to connect with previously. I tip my hat to brain injury survivors everywhere. You guys are amazing.

  6. well said…I even think I am doing better sometimes, then I stumble

  7. I am a 57 year old stroke survivor. I used to be a homemaker, an artist, and a dancer. Needless to say, I am no longer any of these things, at least not yet. My “oldest and dearest friend”, who will no longer be in my life going forward, was at my house for dinner last week. My husband had cooked a lovely dinner, and I expressed my gratitude to him for all he has done for me in this regard, making such delicious and nourishing meals every day. I used to love cooking and I said to ex-BFF that I really missed it, to which ex-BFF replied that she missed cooking too. Well, ex-BFF doesn’t cook anymore because part of her job is to dine out at 4-star restaurants each night. On the rare evenings that she is home, she is “too tired ” to cook, so her boyfriend does all the cooking. At the same dinner, she also suggested that I should get an electric wheelchair so that I could go out to lunch with her. Well, I have spent the past 10 months learning to walk again, and, having gotten out of a wheelchair, NOTHING will entice me back into one, especially not lunch out with someone as tone deaf and stupid as ex-BFF. Thank you for providing a space for me to vent.

    • You’re welcome. You can vent here anytime! I have a lot of “ex” relationships.

    • Julia, BFF sounds like a great person to jettison.

      I was 52 when I had a stroke; when I got home, I worked very hard to be able to cook again – I eventually came up with new ways of making pre-stroke favorites. And befriended my crockpot, which I rarely used before. Although I’ve been cooking since shortly after I got home from rehab, my mother-in-law has been convinced that I am no longer capable of cooking. First thing she said on her first post-stroke visit was that we had to hurry up and remodel the kitchen so that I could cook; she harps on how sad she finds it when men have to cook dinner for themselves; and because my husband (her son) is small and wiry, the last time she saw us she asked me why he was so skinny – was I not “feeding” him? I lost my temper and politely told her that he’s an adult and can eat whatever and however much he wants, and that it was insulting to both of us for her to say I was “feeding” him. She pouted for hours, then had an IBS attack. Can you say “manipulative”? Too bad I can’t jettison her 😦

  8. But how do you get more knowledge out there to a wider range of people? This is what frustrates me! I write about it…. I go speak to people about it…. I talk to anyone that will listen, and I still get the same response so often, “You’re to young to have had a stroke.” AUGH!


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