There’s this quote by Harriet Lerner and I aim to make it my life mantra.
“ If a person we love has found the courage to live through something, then we can find the courage to listen, to give our full attention, and to not back away from asking “Is there more you haven’t told me?”
I can’t explain the pain we’ve felt at various points in this journey when others want us to stop talking about day to day life with TBI. It leaves us hurt and alone, it’s so hard to build a relationship if the biggest part of our life needs to stay off the table. Even since writing again and being authentic about our journey, it’s been interesting to watch the family gossip fly, all without anyone picking up the phone to see how we are.
So here is what I want to tell you, recognizing that while it is our truth it may not be everyone’s truth. All we want is for you to pick up the phone and check in (granted, I’d prefer a text, I pretty much refuse to answer my phone). Ask questions about what we are going through, ask about how we are really doing. You don’t have to have the perfect question or insight to offer, we just want connection and for you to sit with us as we stumble through our life. It also doesn’t have to be the only topic of conversation. TBI is a huge part of our life, but we also watch TV, read books, have quirky neighbours, and desperately want to hear about your life.
I know our story makes people vulnerable and anxious- if this could happen to Jason it could happen to anyone. Traumatic Brain Injuries are terrifying in their pervasiveness, and it can be so uncomfortable to acknowledge the loss of elements of your friend or family member. Please, don’t let that uncomfortableness stop you from reaching out and having a relationship. I know it’s possible because we have made plenty of friends that do it routinely. So for us, now, as we move away from the shame that dominated our first year and a half of TBI, please ask the questions. We might be awkward or entirely terrible at answering them but we will try our best and at the very least we will have shared the experience of being completely baffled by this life.
We’re lucky we’re living this life in the age of the internet. Most of our helpful resources and advice have come from articles and information that we’ve found online, that I doubt I would have discovered without internet. Support groups for traumatic brain injuries and post concussion syndrome are flourishing on Facebook.
These groups can be very useful but come with a unique set of challenges. Here are some things to keep in mind while searching for advice online:
- As we all know some TBI survivors have issues with memory, self regulation, or depression (among other things). This means some posts will be made again and again, some may be sad, some may be inappropriate. Have patience with those sharing their thoughts and feelings and try to remember where they are coming from. This is even more important if you are a caregiver speaking to those with TBI, we will NEVER really understand how they feel or the struggles they face and it is essential we do not come across as preachy or instructive. Be grateful for the stories they share with you and try to learn from everyone.
- This is still the internet. Do not accept diagnosis’ from anyone, nor change medications or treatment plans without speaking to your team of medical professionals. Use the information shared in these groups to come up with questions for your doctor, or lead you to research new treatments or literature.
- There are people that join these groups to try to take advantage of those with disabilities. Please do not ever give you personal or financial information out to anyone from these groups and don’t arrange to meet anyone in private.
- Monitor your own posts. If you’ve had good success with a treatment or vitamin, feel free to share but do not offer false promises or prescriptions. For example you can say “Taking X supplement has reduced my headaches from a 9/10 pain, to 2/10. Here is a link to look into it”. Please don’t say “Taking X supplement has fixed my brain injury. It’s the only thing you need, start taking it now” .
With these ideas in mind Facebook, and other blogs and social media can offer support during this hard journey. Some great groups I’ve learned from on Facebook include TBI Tribe, Spouse of TBI Support, and Closed Head Injury Support Group.
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.
This is a personal post for me. As a registered massage therapist in Ontario I count myself among regulated health professionals and I like to think we are an ethical and intelligent group.
As a wife navigating traumatic brain injury recovery I have been frustrated and disappointed by health care professionals again and again.
So here’s my thoughts – there are a lot of great health care professionals out there. There is a lot of new research and understanding about traumatic brain injuries and post concussion syndrome out there. Not every health care professional has an understanding of traumatic brain injuries and even those that claim to understand it may be working with outdated data (for example the old concept of “the brain only recovers for 1 year post injury” vs. the emerging data about neuroplasticity).
When you work with someone you need to trust them. Be honest about symptoms, be honest about what is within your ability to do and afford for treatments. And then you need to trust yourself to make the decision to switch treatments if something isn’t sitting right.
When a doctor called Jason a wimp for having symptoms 7 months post treatment? We left. When a naturopathic doctor suggested I should just look on the bright side and stop worrying about the severity of his symptoms? Fired. A personal trainer that wasn’t concerned her workouts were sending Jason back to bed for 2-3 hours? Gone.
But we found replacements for each of those important parts of Jason’s recovery that are more well versed in TBI. It might be more expensive paying first appointment fees again and again, but the financial cost is nothing compared to the successes he’s had with his new team and their ability to assess changes in his symptoms well. I encourage you to do the legwork to find a team that is great as often as possible and don’t let words from uninformed practitioners, even when they have all the credentials in the world, discourage you during your 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!
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.
It’s hard to be in the position to support someone with a brain injury. In our experience there is a gap in understanding how the changes in behaviour and personality relate to the brain injury and unfortunately if things like self awareness or word finding are effected you can’t always count on the person with a TBI to make the connections for you.
I can’t imagine dealing with our last year without access to the internet. Google traumatic brain injury and there are a lot of groups and articles that can help make fill in the gaps in your knowledge or lead you to support groups (God willing we will one day be one of those helpful websites!). This article on Huffington Post has quickly become one of my favourites to share because it features quotes from TBI survivors about what they would like others to know about their life. In our experience it hits the nail on the head (all 5 times!) and is a very important read if you want to understand anything about life with a brain injury.
At the bottom of the Huffington Post article are links to other articles by Amy Zellmer regarding her experiences as an author with a brain injury. Grab a tea and settle in to read her very insightful thoughts.