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.

Our truth about dealing with crisis

 

Sometimes I think I need to remind people that Jason didn’t choose this lifestyle. His injuries were a tragedy. Brain injuries are tragedies. The ways it’s changed our life are innumerable and that’s what I discuss on this blog because I only have our perspective. But everyone lost Jason that day.

We often get comments and notes telling us how Jason’s rehab and recovery has been cruel to others. It seems a favourite sport, to contact us to point out the ways we’ve failed, events we’ve missed, times we haven’t been on, how we seem to punish them with every decision we make. 

And that’s where I want to scream. But then I want to say – We didn’t choose this. I’m sorry that some men did something horrible to Jason, and you are feeling the hurt and vulnerability and sadness of violence. But you can’t be mad at us for putting Jason’s health and my mental health first.

I just wish people could see the way tragedy ripples out to touch so many, instead of thinking it touched us and now we are assholes.

 

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.

 

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.

Oh the shame.

Shame. It’s part of everyone’s life I am told but it managed to take me completely by surprise this year. I had no idea so much of my reaction to Jason’s TBI was tied up in shame. As a smart, first born, entrepreneurial woman, fairly prone to perfectionist tendencies I am used to finding solutions to problems and fixing them. Just based on that it should be clear to everyone that having a husband with a TBI was going to challenge who I am.

Jason’s TBI will always be there, symptoms may be more severe, or less severe, but he will never now be who he was before the TBI. There’s no way to “fix” it, there’s no clear end goal, no how to book. There was no possibility of me dealing with it “perfectly” because there is no perfect. And as Brene Brown writes, “where perfectionism exists, shame is always lurking”.

So that is all just to set the scene that this was not going to be easy on us. Add in the fact that Jason was hurt on the first night in years – literally years- that I had gone out dancing with a friend. There was immediately some guilt that I had been out having fun when my fiance was assaulted.

Add in multiple comments in those first 3 weeks when I would  tell someone how scared/upset/angry I was and was told to “be grateful your fiance is alive”.

Add in the times I humbled myself enough to ask for help and was told no.

Add in comments from the best man that Jason would still be perfect if it wasn’t for me.

By the time we were married I felt so unloved. From my perspective I was surrounded by people that thought I had caused Jason to be hurt. Once that thought had burrowed into my brain, all I could see around us was confirmations of that reality:

The brother that never called to check on Jason – too angry at me?

The way my mother in law seemed to only shared photos that didn’t include the bride – hated me for allowing her son to be hurt?

The doctor telling me that Jason’s symptoms weren’t really symptoms, it was just me wanting a “perfect married life” – how could I possibly think I deserved more of his time?

Jason yelling at me for burnt dinner, being distracted, painting “too fast” -how could I keep screwing up everything?

A cousin telling me that she would NEVER let things get this bad with her husband – how did I let things get THIS bad?

The many “friends” telling me how I should feel.  Seriously – is there a word more shaming than should?

The shame was overwhelming. Shame at being married. Shame for not being grateful enough. Shame for needing help. Shame for not being happy. Shame that people didn’t love us enough to stand by us.

I know now that a lot of that was on me, my own thought processes, how I reacted to others,  not reaching out for reality checks from people that cared about me etc. I selectively (and unconsciously) focused on situations that reinforced my shame, and missed out on amazing love being poured out from others. There are definitely things I wish I had done differently – namely finding a counsellor familiar with TBI earlier, and distancing myself from the un-supportive people quickly. 

As much as I can take responsibility for my own reactions during the last two years, there were still a lot of people that could have helped but didn’t.  The medical system that didn’t care about symptoms as long as they weren’t affecting work. The doctor that would listen to a man with a brain injury over a woman with experience studying brain injuries (I don’t pull the sexism card often…but seriously?). The group of friends that continued to act as if having feelings was shameful, and instead demanded a happy face and positive spin. We weren’t set up for success in this recovering from TBI process.

I was introduced to Brene Brown’s writings this spring. One of those times when I kept hearing her name everywhere, and references to her work until it seemed like I should just give in and read it for myself. For those of you that don’t know Brene she is a shame researcher and in studying shame, also talks about joy and love and vulnerability.

It wasn’t until reading her books that I started to have the words to name my shame. I hadn’t  a clue that shame was ruling my life. I didn’t know that it was shame that was keeping me from asking for help, for recognition of our marriage. When our anniversary came that first year I was almost embarrassed to be celebrating something that so many seemed to be unhappy about.

I can’t tell you (or myself) if any of my guesses about how friends and family feel about our relationship are right. People may blame me, people may not, other than one person that has told me directly I may never know. But I do know that my reaction to their behaviour wasn’t okay. It didn’t come from a good or true place and so I’ve been working on that. I can’t say where my shame realization will take me, but I think it’s a big part of coming out of my caregiver coma. Without shame I will have to (and have had to start) face the grief about those relationships that will never be the same, those years I won’t get back, the me I used to be.

So what’s the point? Why share all this suckiness that was our life?

  • If you are a caregiver, I hope you read this and feel nothing like me! But if you do see parts of you in my words, please look into Brene Brown, or have coffee with a friend that loves you unconditionally or e-mail me and let me tell you how far from ashamed you should be for doing something extraordinary with no rulebook.
  • If you know a caregiver (probably in general, but in my experience of someone with a TBI) please look out for them. Pay attention to your words and don’t try to pretend you know what they are going through. If you’ve watched them withdraw or noticed them constantly talking about how much they are failing, please reach out to them with kindness and compassion. Be gentle with them because they probably aren’t being gentle on themselves.

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.

Delayed wedding grief

It took me nearly a year and a half to be able to watch any show that featured a wedding, bachelor party, bachelorette (side note: it took over two years to watch TV shows with fights, brain injuries or hospitals. We watched a lot of Top Chef  and Masterchef for a long time). It was only through working at a spa where I treated brides and honeymooners regularly that I got to the point I didn’t want to throw up while fake smiling through wedding chat. Clients of mine have heard many a lie about my wedding, as I try to forget completely about the summer we were married. But I made it, by our two year anniversary I could almost be happy for people getting married and not completely consumed with bitterness and anger at what we missed out on.

And then we started counting down to my brother in law’s wedding.

I thought in the past we had dealt with grief of our lost wedding and life, turns out I was lying. In the past I had noticed grief and then stuffed my mind full of tasks, next steps, food, people, until I couldn’t notice the grief anymore. And I was pretty okay with that routine, it stung, but then I hid from it and it got better.

And then their wedding was less than two months away.

The grief that rocked our house was like nothing I’ve ever experienced. Panic attacks, crying jags so severe I ended up vomiting, a desperate love of my bed like never before. While Jason and I have both lost friends and grandparents somehow we’ve never been forced to confront grief like this.

In trying to celebrate their love and wedding, we were reminded of how horrible that time was for us, and how hard our life has been since.

Now, if you’ve seen our wedding photos you know it was a gorgeous day and a beautiful wedding. I hesitate to share this blog post at all, so many people did go out of their way to give us a gorgeous day. Everything went off without a hitch. People showed up, rings and vows were exchanged, the food was amazing – not a drop of rain on our parade. Unless you were part of our little twosome. Jason was just 3 weeks into life with a TBI when we were married. The swelling had barely gone down from the beating he took. I was exhausted and scared, and more fixated on our honeymoon appointment at the neurosurgeon’s office than on our actual day. Jason doesn’t remember our wedding at all. I only remember reminding myself to smile and play nice and “act like a bride”.

Some will read this and think, every bride is too preoccupied to notice their wedding. And I will tell you, with as much confidence as I can muster having never had a wedding without TBI, it is not the same. We deserved to grieve for the memories we didn’t make that day, and for starting our marriage off without a second of true joy.

And we’re back…

A funny thing happened this summer. We were trying to settle into a routine. We celebrated Jason’s second “Life Day” based on a recommendation from a friend who knew we were struggling with what the anniversary of the attack will mean to us. We celebrated our second anniversary. Disability insurance started talking about paying for more rehab for Jason. My sister in law moved in and took some of the pressure off of me around the house, and with keeping Jason on task. We saw friends and joined a church, and realized in two years our story went from “no friends that can put up with the pain of TBI” to “blessed with amazing friends that stick it out and don’t get awkward in the hard parts”. I have slowly given up my “perfectionist” coping mechanism over the last 2 years, because there is literally no way to keep things perfect when your husband is accidentally flooding the kitchen every few months.We had a family wedding to look forward to and our dogs, our babies really, were missing.  And all of a sudden in September I woke up and didn’t really know how to keep moving forward.

I couldn’t remember what I did with my life other than work and care for Jason. I looked around our house and saw the meals he prepares and the cleaning he does and very little showing I am involved in our life. I wanted to pick up the phone and ask someone to talk me out of this weird mood, but there are very few people that knew me then and now, and I didn’t even know how to start explaining that I had no idea who I was anymore. How do you lose yourself by 27? For the first time in a long time I was picturing the attack, the hurt in our life and crying. My rehearsed versions of our story were dotted with tears and deep breaths that hadn’t been part of the script during the last two years. I could no longer shrug it off when someone replied with “That’s so terrible”….instead I would reply “Yes, it is.” and then try not to feel revealed, embarrassed and awkward. It is not in my nature to admit things are hard. At least it wasn’t when I knew who I was.

We started seeing a marriage counselor, I changed some priorities in my life, we’re working at figuring out how to get through this season. I’ll be detailing some of the awesome, emotional breakdown in the next few posts but I wanted to give everyone a heads up that these won’t be the typical TBI posts, they certainly aren’t like anything I planned to write when we started the blog. We wanted to focus on sharing info on treatments, what TBI looks like in reality, how long it can really effect your life, and now apparently it’s all about the break down of a caregiver.

I was sent this blog post by a cousin, and I nearly wept while jumping for joy. I’m so grateful to the author of this post for giving me a language to use when talking to others, and for making me feel normal. Please take a minute to read about coming out of a caregiver coma. http://www.16petalsofbluelight.com/i-just-woke-up-from-my-caregiver-coma-and-it-hurts-like-hell/