Life Day 2017

My husband is alive. I don’t know if you find it awe-inspiring every day when your people, those you love and cherish, are alive each day, but I do. Jason is alive and without fast thinking by witnesses 3 years ago, and good paramedics he might not be. Jason is here and we are married, and that is pretty crazy incredible.

When we started this blog two years ago, Jason had just been discharged from Toronto Rehab, we were still new to TBI life and the very first post I shared was a plea to those that hurt Jason to realize their power and start making penance to the world for their hurtful actions. We didn’t realise then that we had power too. We hadn’t considered that by sharing our experiences we could make the way a bit easier for others. We didn’t know our biggest gains would come when we shared our hearts, with the online world and the people around us. We had no idea that by sharing honestly about how life looks post TBI, sharing even the horribly uncomfortable parts, we would in turn be trusted with the most amazing stories of our friends and family navigating the world in their own way.

We had only started to dream that we might be able to make a difference with our lives, even if it wasn’t in the way we had planned. Over the last two years we’ve tried to share a real picture of TBI, while hopefully highlighting the fact that this is just our picture of TBI, everyone’s recovery and problems will look differently. With this in mind, I want to share Jason’s newest stage in recovery – working! Jason’s doctors made it clear, more than two years ago, that it seemed unlikely he would be able to return to the position he had when he was hurt. What followed was a bizarre path to a new career and a new life in Muskoka, that has too many “coincidences” to be explainable by anything other than the hand of God.

June 5th 2017, Jason started working as the General Manager of Highlander Brewing Company, an outstanding little brewery in South River, Ontario. The owners of this company have been absurdly kind to us over the last year and a half and have been patient and supportive during Jason’s recovery work towards being able to work. I don’t know that I have ever seen my husband happier than when he was able to start working again, it has been good for his soul in ways I can’t describe in one post.

Three years has taught us to focus on gratitude and remember that the battle is never done. Because God is who He is, and my husband is who he is, there are always more chances for life to work out in marvelous, astounding ways. We work hard to remind ourselves of that reality daily, especially as we continue to have interpersonal struggles. We still have people in our life that are unable to empathize with the ways TBI affects our life, and that aren’t afraid to tell us we use the TBI as an excuse. The devastation when we hear something like that is unexplainable. And yet, we have also learned more about goodness and kindness and friendship in the last three years in surprising, heart warming ways. When people reach out to inform Jason that they would deal with brain injury better or some other ridiculous claim, it never fails to crush us. But then, when the emotion side of it is done, it reminds us that we still have a story to tell. There is still a need for life with a brain injury to be discussed because there are still people that need to learn. We hope that our blog has helped enlighten and encourage empathy. And so as we navigate this next stage with Jason working, we will still be writing. Jason is still living with a brain injury, and the return to work doesn’t mark being “healed”. There will be stories to share and so we will write.

With all of our love, on a very happy Life Day 2017.

P.s. if you want to support a great brewery – Highlander Brew Co. deliver’s free in Ontario.

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/

Criminal Injuries Compensation Board: The hearing

We submitted our application to the CICB around May 2015 and were granted a hearing in early December 2015. Jason spoke to his case manager intermittently throughout that time and he always seemed nice, but we were still afraid of the hearing.

We told few people about it, I had already heard from some people in TBI support groups that we shouldn’t be flaunting how lucky we were to be able to apply to CICB (it’s a funny sort of luck when you hang out in TBI world). Our parents knew and one set of friends, who we planned on celebrating with that evening regardless of the outcome.

We had the choice of meeting in Barrie or Toronto but because the detective on Jason’s case was based in Toronto we opted for that location. It meant an early morning train ride to the city and some added anxiety being back in the city where Jason was assaulted but our detective had treated us so kindly over the last year and a half we were happy to make life easy for him. We arrived at the CICB building ridiculously early , with tea and coffee in hand, which allowed us to get ourselves even more worked up and nervous.

Part of the stress lay with the fact that in general Jason and the detective were the only ones allowed to speak in the hearing. I feared things missing from our story because of Jason’s memory or pride. As soon as we entered the room the committee, two lovely people, chose to swear me in as well so that I could help with the parts he forgot. Already a prayer answered because they chose to be compassionate.

Because Jason has no memory of that night the detective spoke first, sharing his information and affirming that Jason was not the cause of the incident.  I am certain this would have been a wasted day if the detective hadn’t shown up and stood up for us. I can never explain to him how grateful we are. Following his statements, Jason and I took turns answering questions about the effect this has had on our life and why certain treatment decisions were made. I think in all we were in the room for less than the longest 40 minutes of my life. Despite what I read in various news articles we were always spoken to respectfully, we were given time to come up with articulate answers and clarify ourselves if emotion got in the way of our words.  Both members were kind when they questioned us. It was the loveliest possible conversation for the situation we were in.

After all the discussions were done we were asked to leave the room while the committee came to a decision. A funny quirk of the system, that I don’t think either Jason or I realized until we were in it, was that they still had to determine if Jason WAS a victim. Because the men that did this have not been caught and no charges have been laid, the first step was deciding if a crime had been committed against him. So we were happy, in the weirdest sort of way, to learn that they agreed he had been a victim of a crime and then they walked us through all their justifications for awarding certain amounts of money and not awarding other things. We did end up receiving some money to help pay medical bills but we had already decided that we would write a blog post about the compassionate side of CICB before we knew that. We were blown away by the kindness we were shown.

We write this post not to flaunt our “luck” but to offer a different perspective on the CICB. So much of what is out there vilifies the people on the committee and we want our story to offer some hope to those going through the process, there are some really extraordinary individuals involved with this committee and it can be a peaceful experience.

Criminal Injuries Compensation Board: The application

Sometime last year, when we had already spent thousands on medical care for Jason and were facing the reality of losing thousands in his income, we decided to submit an application to the Criminal Injuries Compensation Board (CICB). We had discussed the idea shortly after he was injured but pride, and I’ll admit laziness, got in the way. It wasn’t until we were 7 or 8 months into life with a traumatic brain injury that we decided we needed to ask for financial help.

It was a scary experience, most of the information available online suggested that asking for help from the CICB left victims re-victimized and embarrassed. The fear of the “hearing” with the CICB board was trumped only by the crushing desperation I felt filling out the paperwork. Weighing in at 15 pages this document requires describing the “incident” and revealing all the ways your life has been affected. Once you’ve torn your heart out to mail to them, you also need to include ALL your medical records, invoices, treatment notes, bills, insurance receipts, mileage records, and pay stubs.

A less brain injury friendly process I don’t think I could imagine. A less man friendly process would be hard. I think it’s fair to say both Jason and I barely survived the day we filled out that application. We worked on it for about 4 hours straight (sorry, OTs!) and then cried and had a nap followed by a drink.

Looking back, it’s another experience where I am so grateful that Jason is the man he is. It could not have been easy to hear my versions of how the injury had affected us – beyond the crappy pre wedding stress and long lost honeymoon, I had to detail the angry nights he couldn’t remember, the sadness I felt when he had to sleep all weekend (literally, awake for meals only) to recover from a week at work. He had to acknowledge the loss of friendships and skills at work, the changes in our relationship. If anything could make a 30 year old man feel like a failure I think it would be this application. We had already accumulated all the medical notes we needed but as we set about creating the binder to send in we made the mistake of reading his files. Facts we hadn’t been aware of became details to add to our nightmares – the fact that he had been unconscious in the ambulance, that the police had called in the Forensics team because they assumed this would be a homicide investigation, that there were 5 areas of bleeding instead of the 2 we’d known about. We survived and sent in our application, in all it was a full 3 inch binder of supporting documentation.

AND THEN…

We had to continue to send in paperwork any time Jason had appointments or had his disability extended. We were supposed to run our trips to Michigan for behavioural optometry by his case manager before leaving but we didn’t know that and so they could not be covered.

It was a terrible process, and yet even with that criticism I don’t know of an easier one – perhaps only having an online portal to upload files so that we don’t need to kill so many trees for every application. And fortunately the application and the fear of the process was the hardest part. Next week I’ll detail our experience with the actual hearts and souls of CICB but basically we were blessed to meet some very compassionate and kind people.

If you know of anyone that needs to apply to CICB please give them our information. Having lived through the process once we are happy to share our experience and I happen to LOVE organizing when my heart isn’t being ripped to shreds. If they don’t want to reach out to us as random strangers, please offer to help them. Whether acting as a scribe or driving them from medical office to medical office to pick up their files, this process can wear people down and you can be an amazing gift to them as they struggle with identity and fear post victimization.

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.