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.

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