Our truth about ambiguous loss

Do you like your spouse? Love them? Can you picture living without them? I liken our situation to being forced to divorce your spouse and enter an arranged marriage with someone you’ve never met before on the same day.

The new spouse might look a lot like your old spouse so maybe there’s still chemistry. But there’s also undeniable differences.

Where your old spouse was smart and clever and could discuss current events for hours, your new spouse struggles to acknowledge you at the end of the day.

You laughed a lot with spouse A, laughter was kind of central to your life, but spouse B doesn’t see anything funny and mostly seems to not even like you.

Old spouse loved to be with you, doing chores or errands together. New spouse seems to hate everything you do, any way you do it.

If you found yourself in this situation would you be missing your old spouse more than you worry about liking your new spouse? How would you balance trying to build a relationship with the newbie when your heart is still really with your ex?

In one horrible night I lost my best friend and fiance, and had to put up with a guy that I kind of thought was a jerk. I had trouble bringing it up to anyone because Jason was still *right there*. If you didn’t know him well you probably couldn’t see a difference. But he was so far from the type of man I wanted to spend my life with, I was crushed during our newlywed days.

I loved when we would get together with family or friends. He could put on this mask, and pull back old habits that made him seem like the man I fell in love with. When we were with other people sometimes I thought I was crazy. They could see Jason still. He seemed to be all there. I worried I was being too hard on him. Or that he was upset he was married to me. He couldn’t seem to bring out the old Jason for me, just the version that seemed to think I was pretty terrible.

On our honeymoon I remember being so sad. He had to sleep most of the time. I spent a lot of hours sitting in a hotel room, watching Netflix and trying to be happy because everyone’s tired after a wedding right? I remember picking out restaurants I thought he’d love, just to have him sit across from me and refuse to put down his phone or acknowledge me. My best memories of our honeymoon all revolve around being at a friend’s cottage with friends, and Jason seeming more like the Jason I fell in love with than he had in a month.

It was a really hard start to our marriage. I wouldn’t wish it on anyone. But I’m betting whatever stage TBI enters your marriage it’s probably pretty hard to be grieving your old life and trying to build a new one. I just want to say you aren’t alone. And if your spouse is like Jason, and can put on a face for other people, that shouldn’t make plan A to surround yourself with friends and family all the time. Push the doctors for more help, find alternative therapies that can help. I will say Jason started to come back to me around the January after being attacked, when he started cutting back on work and sleeping more. For us, behavioural optometry one year after the attack remains the single biggest factor of me feeling affection towards post TBI Jason. Being able to laugh with him and start to see some progress in his cognitive skills gave me hope when I needed it and a start at building our relationship again.

It’s still a work in progress. I would say only over the last month or two have Jason and I actually felt like we are more husband and wife than caregiver and patient. We love it. And we’ve realized I have some serious work on forgiveness to do for all the hurt during that first year of marriage. I can cognitively know that all those slights and fights were the TBI (Timmy) talking, I can even write about it and advise other spouses not to take it personally, but my heart hasn’t gotten the message.

 

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.

 

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.

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/

A note for caregivers

Often we won’t write about a subject or experience on here until we’ve made our own sort of peace with it, not out of a desire to be disingenuous but simply to protect ourselves in case people decide to go all internet troll and fight with us. It’s the way we need to do it for our our own hearts and minds, but perhaps does give the impression that we have it all figured out (or think we do!).

We don’t. Just to be clear. Nor do we think that we know all the answers. Sometimes we have periods of days or weeks where brain injury doesn’t seem to rule EVERY thought but it’s still there, surprising us all the time. Recently we had one of those golden periods where we were feeling hopeful and almost like we might be getting close to finding a routine that worked for us. And then it all fell apart.

We’ve got a big disability meeting coming up. We’re nearing my 27th birthday, the two year anniversary of Jason’s brain injury just after that, then our two year wedding anniversary. In our lives before brain injury we had planned on trying for kids this year, I would have been wrapping up my third year of osteo school, and so mother’s and father’s days hurt just a touch this year. Jason’s been trying to cut back on sleep, with the help and recommendations of a rehab psychologist, which has totally thrown off his morning routine. I took on more hours at work to help out with some renovations we’d like to do.

And so suddenly it was too much, and I spent last Friday afternoon crying at my friend’s kitchen table, drinking kombucha from a wine glass. It wasn’t any big sob fest or anything, just sad, shame filled tears. I couldn’t believe I was so overwhelmed two years in. When was I going to start acting like an adult? When was I going to get it together? Sure Jason was showing more symptoms again (trouble focusing, trouble prioritizing, trouble initiating) but wasn’t that all really my fault for counting on him? He has a brain injury, how the hell could I be angry at him? What type of awful wife would be angry at their husband for brain injury symptoms? When was I going to get my act together and be nice again?

I’ve hit those kinds of shame cycles a few times in the last two years but can’t remember any with clear details.  I’ve been reading Beth Moore’s Goodbye Insecurity and binging on Brene Brown’s books so maybe I was just more aware of the shame this time and able to articulate enough to reach out to my friend. Anyway, she had the most beautiful response that has been ringing in my ears and my mind all weekend:

“The thing about caregiving, is you are human”

Although I’ve been painfully, horribly aware that I am far from superhuman I hadn’t really processed that I am in fact human and allowed, and expected, to have feelings. It was SUCH a relief. I know for those that haven’t been in this position that will seem so silly, but for those of you that are beating yourself up during this care-taking challenge and don’t have a friend to help you guzzle kombucha and give you a reality check, let me tell you. You are human, you are doing well and you are allowed to cry.