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.

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.

A new version of alone

I thought I wrote a review of Rosemary Rawlins’ book Learning By Accident but apparently that was all in my head. I’ll have a blog post coming soon about it – but for now, the short background to today’s link and blog post. Rosemary wrote her book after supporting her husband through his brain injury. It’s a touching story and really captures the overwhelming nature of trying to be a caregiver and maintain “real life”. Now she writes blog posts for brainline.org and I was always find them full of truth. Honestly when I read her posts I feel like I’m sitting with a best friend having a cup of tea.

The post I stumbled across today was titled What TBI Teaches Us About Endings and was Rosemary’s typical beautiful writing. Seriously, click the link and go absorb this woman’s wisdom. She and her husband were married for over two decades before he was hurt and I can only imagine how much there was to mourn when memories disappeared.

One of the hardest aspects of TBI to explain to others was how much I miss pre TBI Jason. Outsiders see how lucky I should feel to have Jason at all, or how similar he seems  when you meet him for a minute or two. More than once I’ve been told to look on the bright side or roll with the punches (which always seems particularly cruel considering we’re here due to an assault). And it’s a funny dynamic because I am SO happy to have Jason alive and I was SO sad that he was not the man I fell in love with. Memories have disappeared, inside jokes are dead. For a long time activities we loved to do (rock climbing,travelling) were limited due to the possible risk to his health. And it’s a strange kind of aloneness when you are having dinner across from a man that looks like the man you love but you don’t know how to make him laugh or carry a conversation anymore.

When I read Rosemary’s blog I’m glad we dealt with TBI so early in our relationship so that there was less to mourn and no children that had to learn to love their new dad. But there’s still a part of me that feels like it was a tragic start to our marriage, grieving pre TBI Jason, my best friend. I have no words to explain how lonely it felt going through two of our biggest days (his injury, our wedding) without him to talk to. Any attempt I’ve made (trust me, I’ve written and deleted about 15 versions while trying to write this post) cheapens our wedding and our marriage. Everyone has dealt with that grief of losing someone at some point in their lives, I just wasn’t aware that’s what I was dealing with. I felt selfish and bratty being sad when he was alive beside me.  I missed him so much it hurt and yet I was really frustrated by him being at home.  I loved him and was committed to our marriage but I didn’t really like him some days.

It’s  hard piece of TBI life for the survivor or caregiver and it took me months to find help, which for me was simply a matter of labeling the feelings. Once I knew a) what was going on and b) that it was okay, I started liking Jason a lot more. The two terms I found for these feelings were ambiguous loss and disenfranchised grief. Up until the point where I discovered those terms I had spent hours researching TBI, symptoms, solutions etc, completely focused on Jason’s piece in the puzzle. Likewise, emotionally, I only saw how he  had changed. One day, a friend brought up these concepts of loss and grief and suddenly I felt lighter. I had a piece in this puzzle too, people (maybe not my people, but PEOPLE!) had looked into how caregivers felt and thought and functioned. Our life didn’t have to be all about two alone people in a house anymore.  And also, because I knew feelings didn’t last forever, I was blessed to feel optimistic about our relationship again. Eventually I wouldn’t be so annoyed or alone. I was right too, at some point we liked each other again, and then somehow fun started coming back into our life. There was no date specifically to recall, it just developed as the grief and loss edged away. They still take over my heart some days but it’s rare now.

So for the caregiver’s be gentle with yourselves. It’s not an easy life you’ve been given and it’s okay to have unhappy days. To the friends of caregivers, I know these unhappy days and the sentiments of grief and loss are hard and awkward. Try to let it be okay for your friend. Look into ambiguous loss and disenfranchised grief and if you think they are effecting you please talk to someone. Try to remember the airplane oxygen theory – you need to care for yourself before you can care for anyone else and if you are beating yourself up over your feelings every day you are going to feel run down quickly.

The reality of change

It’s been ages. Nearly two months since I last wrote, and I had expected to be back writing every day with this move.  I expected life to be easy and that I would have all sorts of free time and I would write and knit and workout and find some balance again.

Clearly I never looked logically at the realities of moving, let alone moving with a spouse with a TBI. So here is the reality,

This move has accomplished a lot of what we thought it would. It removed the financial strain of living with one spouse on disability. It gave us a new house and town to build happy memories in. It has allowed us to meet new people and not get the awkward “aren’t you better yet?” question. We have room to grow in this house. We have room for friends and family. We have had more ridiculously happy and in love days than we ever had that first year.

We also spent a lot of time painting and unpacking boxes. I personally spent a lot of time getting lost on the way to the grocery store or home from work because my geography skills didn’t magically appear by moving. We spend a lot of time watching deer play in our yard, or being stuck in the car as they lazily wander in front of us on the road. We sleep. Personally I sleep like I’m trying to make up for every late night in my life.  When I pictured our move I didn’t spend time thinking about the real life things that would eat away at time.

Our first month reminded me of how many coping strategies we had in place at our old house. Lists, and systems and routines. We lived with them for so long they were really second nature and when we moved we did not prioritize putting them in place again. Without a daily list and organization in the house and a routine it became very apparent how much Jason still suffers with his lack of ability to prioritize, to focus. His energy levels took a hit because every single thing we did every day was a new experience to process, new directions, new stores, new neighbours. Again, all of these things were foreseeable, I just didn’t spend time planning for them.

Unforeseeable things happened too. A friend of Jason’s was killed in a school shooting and we were reminded that the world isn’t necessarily safe. It was a feeling we lived with for ages after Jason’s attack but at some point it stopped being a part of us. Then with his friend’s death we were on edge again, wary of people, happy to stay together in our home. Those feelings passed quicker this time, we’re back to happily meeting people, but that anxiety was palpable for a week or two. Jason was also approached by his alma mater to give a talk on being a successful graduate that has found work in his field. He turned it down because living on disability doesn’t scream success, although I would argue his ability to cope with this last 19 months is extremely successful, even if not the requirements they were looking for specifically. Jason  handled the situation with grace and kindness towards himself.  I was knocked off my axis with grief. It’s not very often we think of what the brain injury means for work or what scientific developments he’s missing in the office. But when we realize it, it is  a sharp, terrible hurt.

And so two-ish months into our move: we are more happy than sad, more settled than anything. We’re still learning and seeing how TBI is a part of our life, but it feels like a smaller part. We have half written blog posts galore to clean up with updates on treatments and new articles and I truly hope we get back to sharing our experiences to help others. Thank you for your comments and kind emails of support as we’ve transitioned, I hope to be connecting with all of you again soon.