I talked in my last post about how “should” might be one of the most shaming phrases I remember from those first 2 years post TBI. The other?
“ Be Grateful”
Now, I’ll be honest here. I am a christian, I know that the bible talks about giving thanks to God no matter what, being joyful in hard times. I know. And I still struggle with it, because I am still me. I am also, no where close to being a theologian. I know what the bible says, I know how I struggle to put it into practice in my life, and I don’t know how to tell anyone else what they should take from the bible.
So this post? It’s not about theology. It’s about the feelings of being a caregiver for someone with a TBI. I am going to try very hard to not speculate as to what I think God would want of us, and just tell you what I wish the response had been to me.
Real life scenario.
Friend 1: “How are you doing?”
Me: “Not so super. It’s just so hard keeping Jason on track, there’s so much homecare to keep him doing and not enough time or money. I don’t even know how we’re going to get through this.”
Friend 1: “You just need to be grateful. So many people with brain injuries end up on the street or violent. You’re lucky.”
Seriously? I had to leave my computer for a bit during the writing of this post because this response STILL annoys me. I still don’t know what to say. Sadly, this response wasn’t a once in a lifetime thing. This is just a more recent one so it is stuck in my brain. I heard variations again and again during the last two years, even at our wedding.
When I’m in this situation I used to feel shame, my internal dialogue would start “she(he) is right. Why do I whine so much? I still have a husband to love. Who cares if I can’t sleep through the night, and I don’t really think he likes me, and I don’t know if I’ll ever make enough to cover the medical costs. At least I have a husband to spend money on. Honestly, get it together Jasmine.”
Does anyone else think that seems a bit ridiculous? I still actually am afraid to share this in case I get replies along the lines of “stop whining”. But I think it is ridiculous. I don’t think I’ve ever told someone to be grateful for what they have and that includes as a response to friends whining that they won’t be able to get away for more than a couple of weeks in the winter.
Here’s the thing. I think we were surrounded by a lot of people that were really uncomfortable with a) feelings and b) feeling helpless. I would speculate that that’s probably a problem in society at large right now, but again, out of my realm of knowledge. For us, most people seemed to want to hear only good things. Unfortunately TBI is not a journey full of good things. We did have some amazingly good things – like when Jason got a new doctor, or was admitted to Toronto Rehab or when Geoff Heddle reached out to us to talk about behavioural optometry. But there were a lot more days of pain, and loneliness and fear.
All we wanted in those days was someone to sit with us in the hard times and stick around. I didn’t need to be told to be grateful – the people speaking had no idea how many times a day I had to write in my gratitude journal just to get through the day without being overwhelmed. I needed someone to acknowledge how crazy hard this TBI life was, without telling me I was lucky to be living it. I was beating myself up enough, I didn’t need other people to come into our life and add to my pain.
I’m not trying to say you experience TBI and suddenly have all the answers to social awkwardness. Not at all, that would be, more than completely wrong. But I am trying to say that after the two years we have lived I have seen enough trends to start talking about my experience and hope it helps someone else respond with kindness.