The question everyone wants to ask

There is one question I get fairly often, usually after someone has had a glass of wine and prefaced with “You can tell me to F*** off if you don’t want to say”…

“ Is Jason the man you married?”

I usually get distracted by the married part – Jason had his TBI for 3 weeks before we got married so yes he absolutely is. But that’s really not what they’re asking. They’re asking if Jason is the person I fell in love with.

The short answer is no.

Who among us would be the same after 2 years, a marriage, a move, a change of career (or lack of career), a health crisis, and loss of multiple friendships? I know I’m certainly not the woman he married.

The beautiful thing is, he is so much more than I ever imagined marrying. Over the last two and a half years he has shown me that he is so much stronger and braver than I ever knew he was. Everyday he wakes up and deals with a life he didn’t plan or choose and he does it with such kindness towards everyone around him it leaves me humbled. While I always knew he was an optimist, he chooses in every opportunity to find new ways to work on managing symptoms, he always try the new support systems I want to put in place, he responds with grace as we look at what isn’t working in our life. We have had some really terrible times in our two and half years of marriage and he has demonstrated an incredible capacity for forgiveness and love even when I’m being kind of wretched. I married a guy that was pretty great and fun, but now I’m married to this incredible man of character.

There are things that aren’t the same. He has more of a temper, he needs me more, he needs routine and sleep more. Conversations take more work, our future might not ever include the kids and traveling we dreamed of.  There are things that are different and I do miss the ease with which we used to live our life. But truly, watching my husband deal with his TBI has left me grateful that he chose me to spend his life with.

Ask the awkward questions

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.

How to Survive Christmas when a Loved One has a TBI (A very general guide based on our n=1 experience and a few conversations with others)

Holidays are hard. End point. Even if you don’t have a TBI holidays involve so much extra stuff and balancing of schedules, they aren’t easy. But since Jason’s TBI they have certainly become harder.

In the beginning, when we were too ashamed to explain to people what was going on we tried to tough out Christmas like we did pre-TBI. That year was full of fake smiles while out with family and friends, and tears and panic attacks while at home.

Our second Christmas we were moving just after the holidays, so I’m pretty sure we were just zombies through most of the festivities. I actually can’t remember.

This year, with more openness to friends and family, and more experience on our side we did better. So here are my tips based on very little experience getting it wrong and even less experience getting it right.

For families:

  1. No flashing lights. Please. They are frequently listed as problems for those with traumatic brain injuries and seizure disorders. As we saw at this year’s wedding, flashing lights do Jason in in about 2.5 seconds and he doesn’t even have a seizure disorder. They’re just too much. So please, if you want your loved one around for longer than a few breaths – turn them off.
  2. Low background noise. Concentrating on one conversation while family members all around him are having other conversations is super hard for Jason. In two hours of trying to concentrate in that type of environment he might use all the energy he would in a normal day. His ability to focus on conversation becomes even more reduced when there’s a catchy song or commercial in the background. So as much as you love your Christmas jingles – keep them quiet.
  3. Organize in advance. Gone are the days when a night out could be recovered from with a few extra hours of sleep. If you want your loved one at a dinner with tons of people, lots of noise, lots of brain work, and it’s going to go late, please make that plan in advance. It gives them time to store up energy, to make accommodations in their next few days to be gentle on themselves. Likewise, if you need them to bring a gift/ dish/ drink – plan it ahead of time. Going into a packed grocery store to search for ingredients and wait in line and battle conversations with the cashier and Christmas music and parking and, and, and just uses up energy that could be budgeted better if you give them the opportunity to plan ahead.

For those with TBI and their immediate family:

  1. Communicate. Seriously. This one is so hard, I know, I’ve been there. But families don’t know how to adapt if they don’t know what symptoms you are dealing with. I know this doesn’t guarantee it’s going to be pleasant or that you will be heard. But not speaking up guarantees you won’t be heard and can leave room for anger in the relationships. If you don’t want to say what you need, just start passive aggressively sharing this blog and let me speak for you! (Kidding. Please, give your family a chance to support you).
  2. Be kind to yourself. Take as much rest time as you can. When we were working with an Occupational Therapist in the first year she said having a schedule and routine beat out everything. So wake Jason up even if he’s tired because that’s the plan we agreed to. For us we’ve had to accommodate that. We try to stick to routine 80% of the time. But things like Christmas require so much more energy, and we want to see family, so we try to carve out extra hours for sleep. Where Jason usually sleep 9.5 -10 hours a night right now to manage symptoms, Between the 23-26 it was closer to 12-14 hours a day, broken up over naps and night time.

Our little twist. I try to speak mostly about TBI experiences that can resonate for others walking through this life. This paragraph is probably not an experience most people would enjoy but I loved. This year, at both Christmas Eve and Christmas day get togethers with our families, my parents and my parents in law sent Jason to sleep. My mom even sent me for a nap on Christmas day. I’m sure this would bother many people, I can even think of a time when it would have bothered me. But this small gesture spoke such kindness and understanding to us that my heart felt like it was being hugged. So often lately I find myself weary under the weight of being in charge of our life all the time, it was a beautiful gift to have someone else take control. But like I said, I don’t know that that is a universal feeling and so I would suggest caution to families that want to start telling their TBI loved ones what to do. Of course part of what made these gestures so beautiful was that it truly was what was needed by us.