Uncomfortable with “feelings” talk? We’ve all been there. It doesn’t mean you need to feel (or act) like a jerk. Here’s 10 practical ways you can help a friend or family member with TBI. Seriously, anyone that did any of these in our first year was considered a super hero in my mind. Amy Zellmer has done a great job of explaining why these actions would be appreciated and when they are helpful to implement so read mindfully and then enjoy being someone’s superhero!
We already discussed what not to say – so what responses do TBIers wish they heard? Brainline is at it again with an awesome article from TBI survivors about the best things to hear! Read it now and put it into practice every chance you get!
This is not my list but actually an article that started on brainline.org and has been shared with me by tons of friends and family wondering how accurate it is.
Have a peek at the 9 Things NOT to Say to Someone with a TBI.
The author of this article has done an exceptional job at outlining the worst statements we heard in Jason’s first year of life with a TBI. I highly encourage everyone to read this article and file it away in your brain for use around your loved ones.
One of the hardest realities of life post TBI is the loneliness of it all. We miss out on big dinners and parties because it’s just too much stimulus. We had about 11 months of hermitting, just trying to get through life and when we were ready to venture out again, for the most part, people had already moved on in their life.
And so as adults, with some very real limitations on our ability to make commitments we are out there trying to make friends again. The joy of making new friendships is that they will learn to love us as we are now, with a 9 p.m. bedtime and a lack of nouns on bad days. They’ve probably seen one or both of cry as we talk about that first year of marriage. They learn our dog’s name in the same dinner date that they learn about Jason’s time at Toronto Rehab and so all these bits of our life are just us, and not a comparison to who we were before. It’s lovely and it’s weird and I have trouble putting it into words.
Then this blog called Amidst the Chaos came across my news feed and the first blog I read was I Need You More Than You Need Me. Our circumstances are completely different, where this author has moved and lives far away from friends and family we still live in our hometown with only a 7 minute commute to either set of parents. But the heart of her blog touched me, and I think it’s exactly how we feel. We need our new friends in a way they don’t need us. It feels so lovely to be welcomed into friend life again, I wish I could explain to them how very grateful I am for them to meet us where we’re at and support us along the way,
P.S. if you love how Christine writes on Amidst the Chaos read her posts on Lessons from the NICU. We’ve lived through completely different medical issues but she sums up everything I’ve wanted to tell anyone that asks about those first few weeks of hell during Jason’s recovery.
If you’ve been reading this blog since the beginning you may be getting sick of my name dropping Amy Zellmer. I’m going to praise her once more because she seems pretty awesome and has been doing a lot of great work for raising awareness about TBI.
I posted about her new book yesterday and today I want to shout out about her partnership with Healing Boxes in the U.K. Healing Boxes was created by Grace Quantok after a friend was in a car accident and conventional gifts didn’t seem to be special enough. Her product benefits those that need a smile during hard times and her profits benefit the community (read more in this article).
Amy Zellmer partnered with Grace and created a healing box for those with TBI. Recently Amy posted a video on Persicope while she opened her first healing box. It contained:
- notecards for keeping in touch with loved ones
- a journal for recording thoughts and symptoms
- an eyemask
- an ice pack
- a meditation cd
- a palm stone
- two bags of tea pigs peppermint tea
It looked lovely and I was stunned to see it was only $39.99 USD. As we watched her open each item and talk about it Jason and I remarked on how much he needed them (especially early on in recovery!) and how perfect the selections were.
If you’re interested in checking out any of the Healing Boxes you can do so here!
Imagine you were the driver of the car pictured here. You’d probably be more than a little upset at that damage right?
Now imagine taking this car to the mechanic and having your mechanic take a look, ask about the accident and then say “ Well there’s that one patch of rust over the rear passenger tire, I can definitely fix that up and you can drive home.”
You’d probably be ….less than impressed right?
Imagine how you would rant to your friends and family about the ridiculous mechanic, how you’d describe the damage to your car, the sound at the impact, the tow truck that took your car away. Can you even imagine your irritation if these were among the replies:
“ I had a flat tire once too, it wasn’t that bad”
“ It probably just needs to go through the car wash”
“You knew you had to get a new car sometime anyway”
It would be a little ridiculous. It’s hard to even imagine people being that obtuse when presented with proof of a terrible accident. In fact if you had visible evidence of this damage I doubt you would ever hear those replies. When people can see the damage I find they are much more likely to accept it.
Unfortunately brain injuries are invisible (http://www.changedlivesnewjourneys.com/hidden-disability-after-brain-injury/) and we got variations of these replies constantly. Jason was bruised and bleeding in the first weeks after he was attacked but once those healed most people seemed to feel that his brain had healed too.
Within a few months Jason’s doctor was encouraging him to “man up” and get over the brain bleeds (FYI this was HORRIBLE and nothing can force brain recovery). He did grant some work from home days for Jason when what was really needed was time off and a rehab program.
Friends and even some family, often answered our stories about symptoms with statements like “I get tired too”, “you’re just getting older” or my absolute least favourite “just be happy you aren’t dead”.
I believe that each time people replied that way they were unaware of the effects of brain injuries and were trying to be positive. They thought we really did need them to offer upbeat responses. Unfortunately the reality is those answers pushed us away and made us feel like we were considered overly dramatic. We were struggling to get through each day and when we discovered we couldn’t be honest about our troubles we just felt more isolated.
It’s hard. I know it’s hard. And it’s easy to want to imagine that your friends and family aren’t hurting as much as they are. But speaking as someone that lived through these awkward conversations for months, it doesn’t help to minimize the struggles. The same way giving advice on fixing a flat tire doesn’t fix the truck.
Do analogies help you? Check out these links for similar conversations about invisible injuries
http://hyperboleandahalf.blogspot.ca/2013_05_01_archive.html (the fish are dead analogy)
We’ve taken a significant financial hit over the last year, lost income and added expenses for treatments. We’ve also lost friends and times with family while Jason recovers and I try to hold our house together.
In a spectacularly cheesy way the best help we’ve received hasn’t been the money or discounts people give us because they know we’re struggling. The absolute best support has been when people sit with us and let us talk, and walk that line of letting us have normal conversations and respecting when we need to change the plan due to TBI. There is so much comfort in sitting with friends and family and having a community. Even better when these times were coupled with food because by the time we survived a whole day of living with TBI it was rare either of us had energy to cook.
It’s hard to sit with friends and family in the uncomfortable and hard times but it’s a lesson worth learning. Showing up and talking about the damage, or not talking but also not demeaning the experience, can really help. I love this article written by a local author about the people that show up http://www.durhamregion.com/opinion-story/5675189-neil-crone-writes-about-the-power-of-showing-up/.
It doesn’t have to be any big spectacular plan, just show up.