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.

Our truth about dealing with crisis part 2

When I get past the ache of being blamed for how a tragedy effects everyone, here is what I want to tell those that feel ignored, or punished in the wake of a loved one’s TBI:

We are too friggin tired to punish anyone. During the first 2 years of Jason’s TBI I spent probably 1.8975638 times more energy trying to survive each day than I actually had. Do you know how exhausting that is? It’s super exhausting (see? I used to be precise, and I can’t even now). But when survival is the goal, and adrenaline and cortisol can be your friends, you make it and you don’t think too much about making sure everyone else feels special and loved.

More recently, survival became less of the goal, and building a life and marriage that will work long term became our priorities. Also catching up on my energy debt from the last two years, which means I spend an absurd amount of time introverting and sleeping now. But since making a life and marriage our goals, we still haven’t worried too much about doing the “right” thing for everyone else. Cause you know, we live together and have to like each other so we better figure that out.

Surviving traumatic brain injury has nothing to do with you if you aren’t in the home. You can help, you can support, but you don’t get to criticize or complain about feeling slighted. If you live in a world where you feel punished because someone that was the victim of a violent crime isn’t going out of their way to appease you, you should probably go spend a day at rehab with them and start understanding where all of their energy is going. And I say that with love, because we have met many people who should know better, that don’t get it. And so if you want a relationship with your loved ones that are dealing with TBI, go be in their life with humility and kindness and love.

Summary: You can be sad/mad that this terrible thing happened to Jason.

You can be sad/mad that this terrible thing happened to Jason and the repercussions reach into your life and leave you missing Jason.

You can’t be sad/mad at Jason for his recovery being inconvenient for you.

Some readings on this that aren’t directly related but worth thinking about:

http://www.huffingtonpost.com/entry/i-suck-at-being-a-friend-right-now_us_581be6d8e4b044f827a78ae1 Do you cut your friends slack for being busy with work or kids? What about someone trying to recover their life makes them less likely to be given grace?

http://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-silk-ring-theory-20130407 An oldie but one of my favourites. If you are not in the inner circle, keep your criticism to yourself.

Wedding Weekend

So the wedding approached and our life became more and more about creating a safe bubble to retreat to for protection. We found a marriage counsellor with experience with TBI and chronic conditions, and we found a church where we could be honest. I took extra introvert time each day, hanging out at the beach alone in the fall, to build up reserves for what would surely be a hard weekend. I poured over Brene Brown books and my bible study and eventually even confided in some women and asked advice about facing the hard stuff that was coming.

Jason dealt with it more often by ignoring what was to come. In the daytime especially he could move through life without worrying. Listening to me talk and work through various responses to the inevitable questions but never really understanding where I was coming from with all the worry. Sometimes, late at night or early in the morning he would lie awake worrying, possibly the worst response for him with his TBI.

And then it was wedding weekend.

Wedding weekend was hard. It was hard to see my husband cry and hard for me to hold myself together. It’s hard to hear that my husband has no memories of our wedding. It’s hard to see the people that hurt us. By the time the wedding came I was too tired to fake anything well and so my goal was simply to show up and not steal the attention of the crowd by looking like a hot mess. We succeeded enough. We made it, we celebrated for my brother and sister in law. My in laws showed up with such genuine kindness and love they gave us the courage to get through the weekend. They hugged us and held space for us and told us we were strong when we felt anything but. Our hearts hurt like crazy but we did the hard thing and that was reason enough for us to celebrate.

Gratefulness part 2

The “Be grateful” line extended to those I met in support groups and rehab too. More often than not, I was told by wives whose husbands had more symptoms, to be grateful because Jason wasn’t abusive, cheating on me, an alcoholic, in diapers, and because he could walk, talk, be left alone. Those women? They can kind of get away with the be grateful line, because they at least are dealing with some pretty hard challenges.

I would still argue, that just because they can get away with it, does not make it the best response. It is a response that shuts down any sense of compassion or drive to share experiences. To me, the be grateful line as used above, signals “this is hard, and we don’t do hard stuff, so look on the bright side”. It doesn’t say “come, talk. I’ve lived through this and you will too, I will help you.” We know we are remarkably “lucky” for the TBI crowd, and responses like “be grateful” have limited our willingness to reach out. It’s hard to go into a support group and hear that just because we have it better, means we shouldn’t be getting support.

The friends we have made since Jason’s TBI, can all, do hard stuff. I might tear up while telling a story, or we ask to celebrate ridiculous things like have disability approved the same night they celebrate expecting a baby. And they are okay with that, they don’t shy away from the hard stuff, and I admire them so much.

The people we’ve met that respond to hard stuff with “be grateful” stay in the acquaintance zone. Talk about the weather, talk about their kids. There’s no way to forge a real friendship (or even continue one if they used to be close friends) if we can’t talk about our life and have some sense of being heard. Our hard stuff, and our successes, look different from our friends’ at this stage in our life. That’s just the way it goes.

When gratefulness hurts

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.

On delayed anger

At our wedding I remember speaking of how grateful we were for everyone’s support, how we knew we had chosen the right people to invite because of the way they reached out to us after Jason’s injury.

The truth is, some of the people at our wedding were cruel post TBI, and some of the kindest, loveliest, gentlest people post TBI hadn’t been invited. With 3 weeks between the injury and our wedding it was difficult to decide how to work the people piece. There were at least a couple of friends we honestly debated uninviting because of their harsh, mean words about Jason’s brain injury and our sadness. In an effort to keep the peace, we chose to not bring it up, and we have regretted having them there ever since. Likewise, looking back, there were a handful of people that showed their love for us so clearly in those days that I can’t believe we didn’t go out of our way to invite them to join us. It seems unreal that we let their kindness be ignored.

The boys that were with Jason that night walked away with barely a mark while our life was changed forever. Honestly, I felt so much love and gratitude for these boys that stayed with Jason in the hospital until I could get there with our parents that anger about this unfairness didn’t cross my mind until much later.

When Jason was home from the hospital and I asked the best man to show up and sit with him, to pick up his suit, to help us get the property ready….and he consistently replied with no. When he would reach out in front of others saying he’d be there for “anything we need” and then condescendingly tell me he “had a life too” when I asked for him to stop by. At the rehearsal dinner when he made a “joke” about everything being different if I had answered my phone that night, let them do the bachelor party a different weekend, not insisted on getting married…then there was anger. That’s right, the night before my wedding the best man told me my husband’s injuries were MY fault. Oh the shame, so much shame for this terrible life changing thing that was somehow my fault. But shame will be covered in another post.

I cried during the best man’s speech and I remember a friend pointing it out and saying I looked touched. I was angry to hear that because my face had betrayed me – I wasn’t touched, I was pissed. This man-boy stood up and talked about Jason being his brother, his best friend, and yet he had no actions to show this “love”. I remember clearly thinking, our wedding is a joke. Lies and fake faces and memories we would never cherish.

Anyway, Jason and I had been stumbling along in our going-to-another-wedding grief, still distracting ourselves with Facebook and podcasts and books and candy crush until we found out the best man from our wedding would be attending. Having to face him, to play nice again, just seemed overwhelmingly unfair. There was anger at the family for having inviting him, seemingly saying his behaviour and treatment of us, of Jason, was okay. And anger at him.

2 years into this life I can officially say I often seem more angry at the boys that were with Jason that night than I am at the boys that did this to him. The people that beat up Jason? I’m not itching to break bread with them. But since they remain nameless and story-less, I can imagine they had hard childhoods, were high, were drunk. I can pretend they had no idea what a beautiful man they were hurting. I can tell myself they’ve regretted it and spent every day since making amends.

The boys that were with Jason? They knew him. They loved him. They knew us. They knew how incredible Jason’s future looked and they turned away. That rejection piece? That does me in. Everytime. For a long time I thought, we (I?) just weren’t loved well enough for them to stick it out. The shame (there’s that word again) broke my heart. Occasionally I would reach out and ask them to visit but it never happened. By one year post injury I think only one of them was answering my messages at all. I can find compassion for the boys that hurt Jason, but I struggle a lot with not being angry at the boys that walked away from us when life got tough.

I know that a proper, emotionally intelligent person would look at how they might be dealing with survivor’s guilt or PTSD, how hard it would be to look into Jason’s eyes and not see a difference, or judgement. I KNOW I should keep that in mind, and in talking to people I usually do rattle it off like I can see their side. But honestly, I just wish they were better. I can finally say I don’t think it was that we weren’t loved enough, but I do wish they were braver.

A little inspiration from Sarah Ramsden

I stumbled across Sarah Ramsden’s story on Facebook a couple of years ago when I was learning about Kombucha and fermented vegetables. She runs a very popular video series on Fermentation (Fearless Fermentation) that I’m always meaning to take to refine our system at home. I love learning and when I read that Sarah had to have brain surgery and then changed her life over the last few years I felt like I’d found someone that gets it. I have about a dozen of her blogs bookmarked to refer to on hard days because I love her insight on how life can change completely after a health concern. Seriously, if you are feeling like your world just doesn’t fit anymore, grab a tea and curl up with her blog. She talks about her own journey from loving the corporate and city life to moving across the country to find joy with less. For today I want to share specifically her blog post Unexpected Lessons From Taking Sick Leave. Sarah succeeds in giving words to the feelings Jason and I have had during his time off. Neither of us wants to say we are grateful for the brain injury or managing life while he is on disability, but we’ve learned some amazing things and been granted incredible opportunities along the way. I’ll sound like I’m stealing her words if I try to list our lessons, but I hope her blog can give you hope if you are in the midst of the painful days.

Changes.

Today we’re closing on our little house. When we bought our house 2 years ago our intention was to stay here, to keep this house as an investment, to raise our children in this neighbourhood.

Just another thing changed because of the attack.

We’re excited about this upcoming stage in our life.  I don’t want to mislead you. This was a decision we made to ease stress and financial burdens and once it appeared feasible there was a lot of joy in the decision. But it is very much a situation born from TBI.

We’ll no longer be living in the house where Jason proposed (I was so surprised I laughed instead of answering which I will never live down). But we also won’t be having coffee on the porch where I cried every morning between Jason’s attack and our wedding.

We’re saying goodbye to the garden we worked so hard to build this summer. At the same time we get to leave the kitchen that was the sight of so many screaming matches early on in TBI life (I had never thought about the dishwasher required so many complex thinking tasks, never mind cooking dinner).

We’re not going to see the neighbours we adore so much when we go for walks, but we also get a break from the awkward grocery store conversations with friends that drifted post TBI.

We have already moved to a beautiful house, with room for babies if we want them and hikes with our dog. We’re going to have trees and grass and be near water, because if we’ve learned anything this year it’s that there’s no point waiting until retirement to enjoy life. I’ve already started a new job where I’m not the boss and I don’t need to take responsibility for everything. I respect and admire my coworkers and I’m excited to meet new people every day. We’ll have more time for things we love, like hikes and dinners with friends and this blog.  It’s not at all the life we pictured for 2016 but we are both excited to move into this next stage. It’s a decision we came to slowly but once it was in our heads nothing would have made us happier.  
This one move depicts everything we have learned from these 17 months. You can have joy and laugh and move on with TBI in your life. But it’s always there, in some way, as a factor.

Traumatic Brain Injuries and Neuropsychological Testing

Neuropsychological testing was performed on Jason at Toronto Rehab. From what we understand this is an assessment only done for those in the program that are planning on returning to work or school. As we mentioned in our posts on Brain FX, some of the results overlapped but it seemed to our uneducated perspective that they did cover different skills and situations at times.

Treatment type: Neuropsychological testing

How to find: Referrals from your doctor or specialist, https://members.cpo.on.ca/public_register/new and select Neuropsychology as the category you are searching

Price: in a hospital setting covered by OHIP, private often above $200.00 an hour as far as I can find

Credentials: Look for someone that is registered with the College of Psychologists of Ontario, with Clinical Neuropsychology as an area of practice

What is it? Neuropsychological assessment is a performance-based method to assess cognitive functioning. This method is used to examine the cognitive consequences of brain damage, brain disease, and severe mental illness.

Notes from our assessment:

This testing was done in two 1.5-2 hour sessions but can be implemented in a variety of time frames, I’ve heard of some people paying for 8 hours of testing to have data for lawsuits etc. Jason said most of the testing was intriguing and task/game based. He had to find patterns, remember words and lists, navigate games without knowing rules based only on the response from the neuropsychometrist who gives the testing.

After each appointment he was EXHAUSTED. To be fair, just hearing about the tasks he had to do made my brain tired so it certainly is not easy testing. The neuropsychologist met with me to go through symptoms and provided Jason and I questionnaires on his symptoms and self awareness and all of this information was combined with the testing data to give us a thorough report on Jason’s strengths and limitations post injury.

The testing is done in a quiet room, one on one, with no distractions. The neuropsychologist and neuropsychometrist made it very clear to us that these results are only indicative of how Jason is able to navigate these tasks to in this specific environment. If you pursue testing I think that is a really important piece to keep in mind, real life (especially most workplaces) is rarely uninterrupted or calm and those confounding factors can change how one is able to think in those environments. Nonetheless it is a thorough report and helpful to keep in his file and in our minds as Jason prepares to navigate the return to work.