Not alone after Brain Injury

Until you have experienced something it can be difficult to accurately imagine what is like. And so it’s challenging to describe how it feels to suddenly have a brain injury, not least because no two brain injuries are the same. But many survivors express feeling like their world has changed. It can make you feel isolated even when you not alone.

Many, like myself, experience psychological challenges such as depression and anxiety. Partly this is because of chemical imbalances in the brain, partly because of how frustrating and frightening it can be to realise you struggle at things that you didn’t before. Along side this, apathy can be common, and so things that would have lifted your mood before, no longer have the same affect.

Others might see the problem.. but not the full extent of it

The result being the survivor may find that they don’t know what to say, and so choose not to socialise. This is absolutely fine as long as they are happy to be on their own, but aren’t lonely. No on should feel alone.

It can be a fine balance that friends and family of a brain injury survivor can find hard. The individual may not want a lot of fuss as they need peace and quiet, but there could be times they need a listening ear but are being stoic. 

somtimes-we-smile-to-hide-the-frownThere is no easy answer to this, as it’s not “one size fits all”. All I can suggest is don’t assume that the answer today is the same as it was yesterday. Some days are harder than others, or they are dominated by different symptoms and struggles. In time, hopefully, one either finds their symptoms ease, or they develop coping strategies and adapt. In turn that could give rise to new hope and begin to the lift the heavy cloud.

What I’m trying to say is, this is probably one of the biggest life changing experiences someone can go through. ¬†Like me, they may not have lost a limb, but they need time to adjust as something profound is missing.

If your sky is falling just take my hand and hold it. You're not alone.

There are so many social groups out there of survivors who will gladly share their experiences to try to help others facing similar challenges. That can be an useful avenue for those who feel no one understands. It can help meeting people who really do to show you’re not alone. Social media such as Facebook, Google+ and Twitter have plenty to choose from. But along side this its still important to have some “real world” contact, and feel like you are still a part of the world. I haven’t yet found a substitute for some human contact. Although this guy does come close…..

My companion, Dexter the Bengal
My companion, Dexter the Bengal

If you’re a survivor, what to you prefer, virtual or real world? Carers what works for you, or you wish people realised?

Just remember if you’re reading this, you are definitely not alone.

 

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8 Replies to “Not alone after Brain Injury”

    1. Thanks Helen, always nice to hear from you. The Like button is the blue star at the bottom of the page under all the social media tablets but above where it recommends some of my other posts, and the posted comments.

  1. Thank you so much. That was very enlightening, even for a carer of 16 years. My beautiful husband Terry suffered severe brain injury in 2000. I particularly like your advice to ‘never assume’ as each day is different. We’re so very grateful to people like you who care enough to share their experiences. God Bless! Kate

  2. Before my accident, my kids would demand to know why I asked just about anything I asked, and would use my response to challenge my thinking, to which I initially respond by telling them to correct their attitude, but they learned how to ask with such a respectful tone that we eventually developed a routine, that I enjoyed, because I could nearly always supply a definitive answer that would shut down the debate.

    After my brain injury, I was slower at responding, would forget the question, and if they persisted, I would leave the room, leaving them feeling offended, and rarely getting what I wanted. I think that clued them in that something was really wrong. They also saw me progressively worsening, and starting to fall or “tip over” as they would say, and they saw how I could not walk to get to bed after sitting through a long family movie.

    However, what began to clue them in the most was when I had to go to court to appeal a decision to take away my health insurance because I had failed to answer a questionnaire about my accident by a certain deadline, and that I was so incapable of pulling my thoughts together that I had to ask a friend outside the family to step in and take over my paperwork. I was not able to fill in a simple form, feeling like every question had lots of legitimate ways to answer, and I couldn’t evaluate which way was what the court wanted. Many days I sat in front of copies of the form, and would fill out the name and then couldn’t figure out which address (the post office had changed my address from Oak Road to Oak Drive, and had warned me that eventually they would not honor Oak Road, but the Court records were addressed to Oak Road, which possibly caused delays in me receiving them, so many of the delays may have been due to the long process of having some stranger return the mail to the postman IF they returned it at all, so I worried that using the new address could cause a problem with the court accepting the document, and I worried that trying to explain what had changed, in my condition, would make the situation worse… and that’s just the street address line. I had similar difficulties with every line on the form!). I had to ask a friend outside the family to step in and take over filling out my forms, and eventually he had to go to the hearing with me and speak on my behalf, because the stress caused my slurred speach to be much worse. I also struggled with guilt, feeling that on some level I might be exaggerating my difficulties when stressed, which was not helpful, because I would tend to agree with theories that I was being lazy; yet I could not overcome it, much to my own embarrassment. Being unable to suppress my own self-doubts, I needed to limit what I said at all. My friend arranged for my daughter to get power of attorney (I’m pretty sure he also paid the lawyer’s fee.)

    As pathetic as all that felt to me, I still had not effectively made my family understand the nature of my difficulties.

    What finally got through to them was that when out in public, where I couldn’t overcome my issues with becoming mentally overwhelmed and exhausted (which could happen in just a few seconds) the inability to just leave a stressful situation caused me to explode in incoherent rage. I acted out badly enough, and enough times in public, that I am amazed I was never arrested. After one particularly bad incident in which I finally managed to just leave and get in my car to rest, two police cars arrived, but I was semi-conscious, and apparently they left me alone. I was having muscle spasms and involuntary jerking of legs and arms as I tried to rest. One of those spasms happened when I thought I might have heard someone approaching the car, but I don’t know. When I was between spasms, I called my daughter, and asked her to come with her boyfriend and drive me home. I was obviously not capable of driving myself home.

    After that incident, I required my family to read an article (sorry I don’t recall what the article was) that described how to help a person who is mentally overwhelmed after a brain injury. It was about that time that I discovered a video on YouTube that does a very good job of explaining the situation and how caregivers can respond, and I asked them to watch it. Since then, I have never gone out in public except to accomplish one simple goal like fill a prescription or make a bank deposit unless I have a family member with me who will be able to recognize when I’m becoming overwhelmed, and will tell me to go rest in the car, and they will take over. I am certain their intervention in cases like that are the only reason I haven’t been arrested. I haven’t had any public episodes like that since we made that arrangement. It troubles me that I cannot control my own reactions, but I can control my “triggers” that cause those reactions, so I am no longer bothered by the problem. This is the video I mentioned: https://www.youtube.com/watch?v=M7VEuMNgQSU

    1. Thank you so much for sharing that video, it makes so much sense. I relate to everything in it!
      It must be difficult having to accept that you can’t control your reactions, but well done for finding how to avoid your triggers.

    1. Linda I’m sorry to hear that. But please do reach out to the online community. I have been fortunate enough to meet lots of amazing people who are also survivors who are keen to support each other. The Facebook groups are a great place to start.

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