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Taking Back Control After a Brain Injury

by Linda W. Arms – March 2013

A brain injury often results in us losing control of our lives. Often, because we need the help and oversight, we have to depend on others. We need help with simple, daily living activities such as getting to an appointment because we can’t drive. We need help with simple decision-making. We need help understanding what we are reading or hearing. We need the help of someone else’s brain for so much!

Our loved ones or caretakers start taking over our lives through no fault of their own. We have to lean on them for so much. They make many or all of our decisions, sometimes even for very simple matters. They answer someone’s question for us. They tell us we have to eat or have to rest or stop doing whatever it is we’re doing because they see it’s too much for us or it’s not safe to continue. We want them to do these things for us because it’s too much work or impossible to do by ourselves.

After my brain injury I felt like I instantly turned into an 85-year-old woman and a young child at the same time. I could not move fast and was unsteady. I had little strength. I needed someone to hold my hand to walk across the street, to tell me to stop what I was doing, to take a nap… I wanted someone to comprehend what was being said to me and help me respond.

As I improved, I slowly took over many things people were doing for me. I was not always successful, so I needed their help again. My capabilities were also inconsistent depending on my level of fatigue. My helpers were often standing by, watching and ready to step in. They let me try on my own. It was like being a young child who is learning new things in life. I was VERY grateful for all the help!!! Often I thought, “please, make this decision for me, it’s just too hard for me”.

In recent years, however, as I improved, I needed less and less help. It is sometimes a little difficult taking back that control over your life. Those you counted on became too used to taking over for you when you could not do something. As you improve it is often a bit challenging and even confrontational when you start taking charge of your life again. After all, you’re a big girl (or boy) now and you can do it by yourself.





10 Responses to “Taking Back Control After a Brain Injury

  1. I’m very glad I found your blog. I too am a tbi survivor. I related very well with the ‘turning into an 85 year old woman/young child’ description….thank you, thank you, thank you for sharing.

  2. Barb

    What a joy. Thank you for your blog! After nearly 9 years, many days seem ‘nearly normal’, which is amazing.
    I love to learn from other survivors, and share that info with many.
    Recently, a lovely woman hired me for her busy office. I am there shortened days 3x a week. Some days I want to fall apart, but I am learning so much! I used to be that ‘juggle woman’ – you know, five things at once at breakneck speed? Gee, I wonder why I was injuryed??? LOL Now, I am slow, steady and as cheerful as I can find a way to be. It is a blessing.
    Thank you again!

  3. Love your blog Mina. Keep up the great work.

  4. James Grayson

    I’ve had TBI for 13 years now. I just got on this website yesterday Ann I’ve learned a lot in such a short time that I’ve been here. Thank you for your insight on TBI and how to deal with my problems.

    • Thank you so much for your wonderful comment. Right now I need some encouragement. It is so nice to hear a kind voice. Take care and come back and visit The Brain Fairy.

    • tbi survivor of (almost) 13 years as well. glad I found this blog. ­čÖé

  5. Trina

    Thanks so much for writing your insights, Mina…it is so helpful just to know that there are others, like me, who have had to struggle, and have made it through the rough patches.

  6. i have no one2 half years i cope each day is a up hill battle made lots mistakes including being venerable and getting abused verbally and moneytary lets say there some not nice people oon this planet i had a sah folowed by stroke not nice for any of us theres no support here in uk maybe some london way but not wales

  7. I was well and then, in a split second, I wasn’t. I suffered a hemorrhagic stroke that left me not talking for 5 weeks, double vision, and using a wheelchair. That was 4 years ago, and since then, I took back some of the control that I relegated to others. I talk incessantly now and I walk with a quad cane. But it was a fight–me against them–but it’s getting better each day. I have to prove to others that I can do some things that I couldn’t do before.

  8. So well put. I was so fortunate to have such a caring husband. He did everything. For months he even called me from work to remind me to eat.. Thankfully, I am so much better now, accomplished so much healing, but it’s been a long and slow process. After 4 years, I have just begun to buy groceries again. There are still remaining issues though. I’m so glad you share your story.

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