What I Wish I Knew


I remember sitting beside Jason in the emergency room in St. Michael’s Hospital on the morning he’d been attacked and I was terrified. I had the opportunity to work with TBI survivors in high school and I remembered their stories of losing their families and jobs, the way they could no longer walk and talk at the same time, the loneliness they spoke of. Jason wasn’t allowed to get off the stretcher until they cleared his cervical vertebrae of injuries so when he had to pee, I had to hold a cardboard urinal for him. I remember holding it, and asking a doctor what I should do with the container. His reply was to figure it out and I remember very clearly saying:

“I just turned 25, I don’t know how to figure any of this out”.

When I think of that conversation now, I kind of laugh. It’s absurd right? That poor doctor. First of all, he clearly had more important things to do, and secondly at 25 I was an adult! But I was just so scared. Later that week, when we were home, I remember saying the same thing to my dad and he replied that there probably wasn’t any age where you really know how to deal with your spouse being hurt so horribly. Which is true.

And so all of that to say, this is what I wish someone had told me to help me figure it out.

  1. You will need to learn to ask for help.
    • This one is huge. It doesn’t matter what you have managed to do in your life all on your own up until this point, you need to learn to ask for help. I struggle a lot with asking for help in general, but once I was so ashamed of the troubles we were having I absolutely couldn’t find a way to ask for help. I wish I had known then how much people need to be asked to help. I assumed because I knew brain injuries (a bit), that everyone would know brain injuries, or be able to find the information, and would offer help if they wanted to provide it. Therefore I assumed, no offers of help, meant no one cared. This just isn’t the case. People don’t know what’s going on symptomatically. People don’t know how to help. So ask for help. TBI is too long of a journey with too much heartache to survive on your own, you need to ask people to come around you with love and support and take everything they give you.
  2. You will lose yourself but you will survive
    • This one is more of a hope at this point but I have to believe it’s true. During TBI recovery your spouse will need everything from you. You need to be their advocate, you need to make sure they do their rehab and take their meds and brush their teeth. On down days you need to watch them to make sure they’re not too down or anxious, that you don’t need to bring up depression to the doctor. You need to keep track of their appointments and paperwork. Your job, your passions, your identity will seem to fade (although possibly less so if you listen to #1 and do better than me!). But there will come a time where you get to start recovering yourself. And that will probably suck all over again, but I am choosing to believe that the opportunity to rebuild myself is beautiful.
  3. This will be so hard, but also so worth it
    • This one is, and has been, my mantra for most of our journey  with TBI. Dear friends of ours had also had their new marriage touched by TBI and all the grief and loss that comes with it, about 2 years before Jason’s. They reached out and told me again and again that it was hard but worth it. It helped their communication skills, their teamwork, their trust and their faith.  I had to believe them, because A) they are a stunning couple to be mentors in this weird walk and B) something had to come out of Jason’s TBI. Nearly 2.5 years into our life with TBI and Jason and are able to say some of the same things. Our communication and friendship with each other is better than it was pre-TBI. Our love is much more rich than before. Our priorities and life shifted in a way that is going to allow us to be healthier long term. It’s been hard, it still is hard, but I can already say that the hard times have been worth it.
  4. Things will change
    • I can speak only of Jason’s recovery, but his limitations 2 years ago were much more severe than they are now. What he required of me as a caregiver back then is very different from what he wants in a wife now. Symptoms will change, treatments will change, you and your spouse will change. If you are in a season where it seems like nothing is getting better and you can’t see any hope on the horizon, I really believe, something will change. I’m actually not a huge lover of change, I like predictability and control, but this journey with TBI will teach you to see beautiful gifts in change.

 

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