Luck🍀

If I could get a dollar for every time we have heard “do you know how lucky he is to be alive?” I think we’d be millionaires. Now, in full transparency, I do feel that many times when people (including those who we have a tremendous love for) have said this to us, it has been with immense care and love.  However, I want to help share the other side to this comment that I’ve gained from our experience navigating a loved one going through a traumatic brain injury. 

I remember walking into an appointment (the many appointments in those early days) after my husband came home from his time at the rehabilitation hospital. We were in lack of better terms, survival mode.   As we sat in the waiting room it felt like the immense rush at the deli line at the grocery store. Just waiting and sitting there to be called with your number in hand.  As we waited I had constant thoughts running through my head. “Is this waiting room too overstimulating for the raging headache he walked in with?” “Is all this noise amplifying the ear pain he has?”  “Did I ever pick up that prescription?”  “How much longer are we going to have to wait out here?”

We finally got called back and situated into the room. Shortly after, we heard the familiar two knocks providers give before someone enters. We gave the mundane “come in!” response we were so used to saying… and without a “Hello” “How you doing” “My name is”… all we heard was an abrupt, “I looked your file over and do you know how lucky you are to be alive?”

 *cue my eyes about to pop out of my head*

Trust me, I had the binder and notebook in my lap at that very appointment to back that up. (Which if you are caring for someone with a TBI there will be a separate post about that soon!)   But, hearing this abruptness in the still very raw early moments of his injury, it took me back. I wanted to scream…. “you don’t think I/we KNOW that?!” As I cleared my head, I thought I could only imagine how my husband felt. 

On the flip side (and it may seem contradicting) some very close people in our lives who we wholeheartedly trust, had to gently remind us this when we were in rut. These special people in your life may need to remind you this very thought that grief can heavily (and easily) cloud. 

I think for us, one of those special people was my husband’s incredible rehabilitation team. We were fortunate enough to have my husbands inpatient and day rehabilitation care at the #1 Rehabilitation hospital for the last 32 years, Shirley Ryan AbilityLab. 

We had an incredible team of therapists and rehabilitation doctors sit down and educate us about what happened to Chase’s brain (which by the way seeing your loved ones imaging of the brain in its intrinsic complexity on a massive screen is remarkable in itself) and what the plan of attack was going to be when he was receiving rehabilitation services.  As I reflect a few years later on that moment though, luck was not even brought up in those discussions.  His team met us where we were at… full of fear, worries, hope, and a million questions. They shared their knowledge and encouragement that empowered us to see that end goal, even in those early moments. Luck didn’t even play into any of that. The road was never linear but that end goal never changed.

But.. our family is very lucky that my husband is alive. Was his injuries intense? Absolutely. Are his outcomes remarkable? Absolutely. Did God without a doubt work a miracle in our situation? Absolutely. Are we lucky for the village of those who literally rallied (I mean truly RALLIED with us… and in the midst of a global pandemic)... Absolutely. Are we lucky that we were able to access an incredible rehabilitation team and facility? You better BELIEVE it. I want my words to bleed immense gratitude. Which is why it may seem like this whole post is a contradiction… “Katianne, you’re saying you don’t want to hear others saying how lucky he is, but you are acknowledging how lucky you are”…. I get it… While I acknowledge we are lucky, I think there is one really important clarifying point- I think luck is a really tricky word to connect with a brain injury. I do not think anyone is lucky to have to deal with the life altering trauma that a brain injury does to someone and their family unit. The constant worries. The hours of research spent on how to help work through the many complications a TBI can put on someone's life. I do not think anyone is lucky they have to process the grief of  “life before a TBI'' verses having to accept the “life after a TBI”. Frankly, there is nothing lucky there. Do I at times wish this situation never occurred in our family? Of course. Have I been able to see good come out of it? Absolutely. I mean the incredible situations of connecting with others because of our family’s experience has been really unreal.

All in all, I have since learned a better response when the opportunity arises. I too, probably would have said the same thing coming from a loving mindset if I had someone go through what we went through. There’s no shaming if that’s how you responded! I still love you! (cue virtual hug).  But, I want to challenge you on sharing some helpful conversation tips when talking with someone you know who is navigating life with a traumatic brain injury. Many of these responses I heard from my very near and dear friends who I swear should be therapists in their second careers and also fellow friends who are navigating this brain injury world too. I hope they help! 

• “I know this may feel really hard right now. Know I am here for you in whatever magnitude you need me”

• “I know you are swarmed with messages right now, no need to respond, but just wanted to let you know I am here and thinking of you”

• “You are strong”

• “Do not doubt the decisions you are making!”

• “This is a really hard situation you’re going through right now”

• “I’m proud of you for handling this tough moment in your life”

• “This is really scary and unexpected, take it a step at a time”

• “I know you are probably still processing this, but if you need to talk I am here”

• “You are having to juggle a lot right now, can I _____ ( insert item like “drop off dinner, or pick up the kids to go to the park so you can have a break, etc).

• I specifically loved this one, because there is so much decision making needed in those early days, it was so fatiguing. Having someone offer something specific allowed me not having to process and think of things I needed help with (which is out of my nature!)

And for those navigating this complex world, I hope this space gives you a place to know you are not alone.

In this together,

Katianne