Posts Tagged ‘Support Network’

Family and Friends: Why Can’t Some Understand?

I have friends I can’t talk with on the phone. They simply do not understand what my needs are (quiet background). And if I do talk with them, I invariably hang up on them simply to keep from short circuiting. So they think me rude.

Reality is that brain injury is hard to understand. I live with it every day and I do not understand it. How hard is it for a loved one or friend?

First, I can do some things one moment and can’t the next. I can run mountains, but not easily talk or be around others. Lots of things do not seem to make sense, at least until someone understands about brain energy levels, how they affect capacity, and how my brain can’t process sensory input very well.

If someone really wants to learn, how can you help them?

Education
Education is the first step. Encourage them to poke around this site, starting here. Invite them to poke around the net. Invite them to ask you or your caregiver any questions. I commonly tell people, “I know this doesn’t make sense and it causes a lot of questions to come up, like ‘Why can I run mountains, but can’t help more around the house?’ (it’s all about managing brain energy and spending it wisely and avoiding short circuiting). Ask me anything you’d like.

Be a Temp Caregiver
Spending time with you, as your temporary caregiver, giving your regular caregiver a break, teaches them a lot. One friend said to me after doing this: “I know you explain things to me, but I really had no idea. Now I understand better what you live with every day.” Being a temporary caregiver not only teaches them about your brain injury, it also gives your caregiver a much needed break!

Ask Questions, Don’t Judge or Assume
Some folks take things personally. If I can’t be out with them when they visit (because I pay a high price in brain energy, and risk short circuiting for a myriad of reasons), they seem to conclude I must not want to be around them. Yes, folks, my brain injury is all about you.

Others (or even the same ones), are completely baffled as to why I don’t (work, help out more, just get over it, etc…). They do not understand why I am making this up or at the very least making it worse than it actually is. Who knows what is going on here, but a general rule is that it says far more about them than about you if that’s what is going on.

Many people are afraid. If it happened to you and is so hard, it could happen to them. They don’t want to face their own demise. Better to blame you and avoid having to handle something tough.

Focus Your Efforts
You will have people you would like to keep relationship with, but who make choices that you and your brain injury can’t overcome. Their loss.

You need to focus your very limited brain energy on what you can do. Those who are interested in learning can be a powerful support network that helps bring out the joy in the long hard road with brain injury.

How do you help family and friends understand your brain injury?


Deacon Patrick’s Round the World Progress

Deacon Patrick's Round the World Progress