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.

Relationship Goals

If you ask Jason or I, we won’t lie to you, our relationship took a hit with the brain injury. Our roles changed, not just with me working out of the house and him being home on disability, but even our roles towards each other. I became very much like a parent, checking his daily schedule, reminding him of his tasks. The things we celebrated in that first year of marriage included his being accepted to Toronto Rehab and long term disability being approved, not necessarily things that newlyweds think they’ll be cheering for. The fact that Jason loved me through all of that, and never seemed to resent my bossy role is a testament to what a good and patient man he is. We were told early on we had a 90% chance of being separated by one year into the brain injury, and a 70% chance of divorcing from then on out.

Statistics like that are scary, and fortunately act as a great motivator for Jason and I. In the beginning we had to focus on recovery and surviving, and I don’t regret a minute of it. But now, as we seem to settle into more of a day to day routine we’ve decided to change things up. Over the last few months we’ve been trying to prioritize regaining our feelings of husband and wife, rather than roommates, or patient and caregiver. We literally find ourselves having to choose to be married every day rather than fall into other relationship dynamics. Romance for us is more about choosing to try in small ways, than some fancy dinner or big gesture.


And so we had to come up with a brain friendly way to love each other. Most of our strategies come down to clear communication. If the idea that your spouse should mind read fails in a regular relationship, it will definitely leave you disappointed when brain injury is a factor. There’s just no energy left for trying to sort out coded words or meanings. And so we make lists and read books and add our relationship into the schedule (actually, this is just what we are trying to do, we are by no means masters at this!).

Our love list: Hanging on our wall in our bedroom is a chart. This chart has 5 things we can each do to take care of ourselves (different for each of us, mine includes things like pray, go to the beach, for Jason it’s watch a movie or go for a walk with Willow). Below that is 5 things we can each do to love the other person. Again, different, mine involve things like kiss me hello, ask about my day; his include specific words of appreciation and kind reminders of our schedule. It’s not romantic in the traditional sense of the word I suppose, but I feel overwhelmed with gratitude whenever I know that Jason has taken the time to remind himself of the list and make an effort for me.

We also started the Bethke’s 31 day challenge and when that was too overwhelming decided we would stretch it out over a series of weeks with 3 love challenges a week. And I have to tell you, when Jason chooses to use some of his energy to show me love it lights me up. Again, these are actions we schedule into our week on Sunday so that we can plan and conserve energy as needed. 
Some other reading about relationships and TBI: http://www.darlingmagazine.org/do-we-need-new-love-songs/

The ultimate preplanning meal planning strategy

Like I’ve said before I have always been a meal planner. For me, I really struggled to adapt to the differences between pre-brain injury meal planning and meal planning in the midst of exhaustion and grief. I nearly always missed ingredients that were crucial or got quantities wrong. Half the time meals that looked good on Saturday before grocery shopping were overwhelmingly difficult by Wednesday night after 7 clients. I just really wasn’t great at it and it meant we ate take out a lot.

I reworked my planning multiple times over the last two years and it pretty much always failed me. Now, just a few months ago we started a new system and I have to say we have had much more success. We moved into this house and were blessed with tons of storage space which is probably the issue that might be the most limiting for this system.

Our bin system, nearly fool proofized

Step 1: Once a week on Thursdays I take out all these bins and lay them out on our counter. And then I start planning. In theory, my planning includes looking at flyers for what is on sale as of Friday (when we grocery shop) and what our week looks like to choose time sensitive recipes. Sometimes that happens. But if not, my most lazy planning involves looking through our recipe binder and pinterest and printing off recipes for at least dinner (lunches are often leftovers and breakfasts often smoothies).

 

Step 2: I use a half sheet to write out what we will eat each day to keep myself organized and place the required recipes in each bin. We try to keep all the recipes in protective cover sheets so they survive cooking accidents.

 

Step 3: Then I go through every recipe and pull all pantry items that we have and place them in their respective bins. Based on what is in the bins and in my fridge I am able to create my shopping list for any other ingredients.

 

Step 4: After we shop on Friday we fill the bins with their items and place them back under the counter.

Each morning ourhome reminds us to check the bin so that we can confirm we know what the dinner plan is and that we have taken out any meat that needs to be defrosted*.

This system is somewhat brain intensive for organizing and getting used to, and I tend to be the one that does it most often in our house. The real energy saver comes when it’s time to cook and all ingredients are in one bin, ready to go. We have also had far fewer nights where recipes are missing ingredients since we started using this system, meaning we eat home cooked meals more often now than before. This system solves a lot of the problems we were having with meal planning and cooking at home. 

*Right now we are trying to add in a step where I add post it notes to each bin with what needs to be pulled out of the freezer for the next day’s dinner. It works well when I make time to do it.

 

 

Lists we love

Throughout Jason’s recovery we have tried tons of different lists. The list saga has definitely proven to me that what I think is a good system, is not always the case. In the beginning my lists had colours and sublists and were scattered throughout the house like it was a scavenger hunt. Just in case anyone is wondering, that was not useful for managing Jason’s energy levels.

I think an important thing to clarify for anyone dealing with a brain injury is what medium works best for them. I’m a paper and pen girl. I LOVE scrawling lists on post it notes, crossing everything off and the joy of throwing the list in the fire when it’s complete. However, written notes mean Jason either needs to remember to bring them with him or needs to go back to the fridge every task to see what is next. We found quite a few good templates on etsy and pinterest that might work for different families. One we used for quite a while was this one from etsy:  https://www.etsy.com/listing/174372800/daily-page-notepad-6-pack?ref=shop_home_feat_4 (there are also digital download versions available that you can fill in and print off easily)

When we used this list we had Jason’s daily routine detailed in the green To Do’s section and then filled in the rest of the page as needed so that while I was with clients he could navigate his day easily. We made the change away from this list when initiation and time management were becoming more problematic.

We now use OurHome which I’ve written about before. It’s a list app that works well and allows us both to add things to our own, and each other’s, lists as needed. You can set up reminders within the app so that you get notified when a task needs to be done (we always have reminders set for things like feed the animals, phone calls that need to be made etc).
Still, remembering to look at the list was a challenge so Jason found this app, After Unlock, that makes ourhome the first thing that pops up every time he unlocks his phone. This seems to work well for us, for right now.

How we make life routines

As much as possible we try to organize our life into themes of the day. Mondays I try to stay home and organize, clean and be with my husband. Wednesdays we try to schedule Jason’s rehab appointments and have errands. We know by Thursday most weeks we need a quiet night at home. Sundays are for church and rest and planning how to make life work for the next week. For us, none of this is set in stone but more often than not that’s how the week plays out. We have our sleep routine as outlined previously which adds extra structure to our week to keep us on track.

On Sundays we sit down and try to list everything Jason has, or has to do, in the upcoming week and then build those items into his week.  This exercise is crucial for allowing Jason to work on initiation, motivation, memory, time management, problem solving…all those executive functions that have been impacted by the brain injury and that he needs to strengthen for a return to work.

Now my caregiver confession is, I actually really suck at this process. It would be SO much easier to just make the plan myself. This is the time, every week, that I have to remind myself of our family goals, that we want Jason to be able to return to work and we want him to get as much practice as possible at building these skills.

In a stroke of genius, Pinterest threw this beautiful link (http://www.dosmallthingswithlove.com/2015/04/husband-and-wife-meeting-printable-agenda.html)  up at me a few weeks ago and based on a few weeks of practice it has transformed our Sunday night planning session for me. Sunday nights are now not about sitting and helping my husband recover from brain injury, but about appreciating each other, communicating and getting on the same page. It might seem silly to some, but for me this outline has really changed how I approach our life routines.

Everything laid out for our Sunday night meetings – just missing the big mugs of tea that usually accompany us.

How to live when brain injury is a factor

Bold claim for the title, but really my blog post can probably be summarized with one sentence: it’s different for everyone.

We were told repeatedly that routine and lists and organization need to become priorities in our life to minimize the work Jason’s brain is doing just to get through each day. And so we’ve spent the last two years trying to refine and adapt our routines and coping mechanisms to make life easy. We aren’t the best at it, and despite the fact that I actually love routine I’ve learned it’s really hard to enforce when you also want to feel like you have a full life.

  1. Life routine. In general, I do not set us up for success in general routine. My work as a massage therapist and as a Norwex sales rep does not have the same schedule week to week and so my ability to help out around the house changes. I have, at various times, considered trying to find an office job or retail with set hours, just to make our life a bit more predictable but frankly my job and coworkers are often one of the things that keep me sane and happy.
  2. Lists. Lists are great. I am a super list maker. I can have lists on the fridge and in my dayplanner and my phone and the car. I make a ton of lists. But do they make sense to Jason? Is my writing even legible? Is he even checking them? Lists are only a great tool if you use them after making them, which is sometimes a challenge. One of our goals for 2017 is to work on using lists more efficiently.
  3. Meals. Despite always being a meal planner, meals are an area we have struggled quite a bit since the brain injury. The exhaustion and frustration that controlled much of our life early in this journey meant that by dinner time we had no ability to cook. Even as we started to get more disciplined with sleep and routine, my grocery list making or shopping often left us scrambling when we didn’t have the right ingredients. We’ve since found a pretty good solution that I’ll discuss in another post.
  4. Relationship. Brain injury stole a lot of our newlywed memories and experiences. We’ve had to rework how we live out our marriage so that it a)helps us both feel loved and b) doesn’t take all of Jason’s energy.

Over the next month or so I’m going to go into each of these topics in a bit more depth to explain what systems we use that seem to help us live out routine. Nothing is new or amazing, I basically just explore pinterest for hours to see what other people do, then try it at home and adapt it 8467 times as needed. My hope is that with this mini series of posts we will be able to help anyone see that a) Brain injuries may require life long problem solving and energy conservation, b) provide examples of systems that may work for others or may spark ideas for others. Every brain injury is different, every family is different so what works for us today, may not work for us in a few months let alone for a family with different challenges.

The question everyone wants to ask

There is one question I get fairly often, usually after someone has had a glass of wine and prefaced with “You can tell me to F*** off if you don’t want to say”…

“ Is Jason the man you married?”

I usually get distracted by the married part – Jason had his TBI for 3 weeks before we got married so yes he absolutely is. But that’s really not what they’re asking. They’re asking if Jason is the person I fell in love with.

The short answer is no.

Who among us would be the same after 2 years, a marriage, a move, a change of career (or lack of career), a health crisis, and loss of multiple friendships? I know I’m certainly not the woman he married.

The beautiful thing is, he is so much more than I ever imagined marrying. Over the last two and a half years he has shown me that he is so much stronger and braver than I ever knew he was. Everyday he wakes up and deals with a life he didn’t plan or choose and he does it with such kindness towards everyone around him it leaves me humbled. While I always knew he was an optimist, he chooses in every opportunity to find new ways to work on managing symptoms, he always try the new support systems I want to put in place, he responds with grace as we look at what isn’t working in our life. We have had some really terrible times in our two and half years of marriage and he has demonstrated an incredible capacity for forgiveness and love even when I’m being kind of wretched. I married a guy that was pretty great and fun, but now I’m married to this incredible man of character.

There are things that aren’t the same. He has more of a temper, he needs me more, he needs routine and sleep more. Conversations take more work, our future might not ever include the kids and traveling we dreamed of.  There are things that are different and I do miss the ease with which we used to live our life. But truly, watching my husband deal with his TBI has left me grateful that he chose me to spend his life with.

Ask the awkward questions

There’s this quote by Harriet Lerner and I aim to make it my life mantra.

 

“ If a person we love has found the courage to live through something, then we can find the courage to listen, to give our full attention, and to not back away from asking “Is there more you haven’t told me?”

 

I can’t explain the pain we’ve felt at various points in this journey when others want us to stop talking about day to day life with TBI.  It leaves us hurt and alone, it’s so hard to build a relationship if the biggest part of our life needs to stay off the table. Even since writing again and being authentic about our journey, it’s been interesting to watch the family gossip fly, all without anyone picking up the phone to see how we are.

So here is what I want to tell you, recognizing that while it is our truth it may not be everyone’s truth. All we want is for you to pick up the phone and check in (granted, I’d prefer a text, I pretty much refuse to answer my phone). Ask questions about what we are going through, ask about how we are really doing. You don’t have to have the perfect question or insight to offer, we just want connection and for you to sit with us as we stumble through our life. It also doesn’t have to be the only topic of conversation. TBI is a huge part of our life, but we also watch TV, read books, have quirky neighbours, and desperately want to hear about your life.

I know our story makes people vulnerable and anxious- if this could happen to Jason it could happen to anyone. Traumatic Brain Injuries are terrifying in their pervasiveness, and it can be so uncomfortable to acknowledge the loss of elements of your friend or family member. Please, don’t let that uncomfortableness stop you from reaching out and having a relationship. I know it’s  possible because we have made plenty of friends that do it routinely. So for us, now, as we move away from the shame that dominated our first year and a half of TBI, please ask the questions. We might be awkward or entirely terrible at answering them but we will try our best and at the very least we will have shared the experience of being completely baffled by this life.

How to Survive Christmas when a Loved One has a TBI (A very general guide based on our n=1 experience and a few conversations with others)

Holidays are hard. End point. Even if you don’t have a TBI holidays involve so much extra stuff and balancing of schedules, they aren’t easy. But since Jason’s TBI they have certainly become harder.

In the beginning, when we were too ashamed to explain to people what was going on we tried to tough out Christmas like we did pre-TBI. That year was full of fake smiles while out with family and friends, and tears and panic attacks while at home.

Our second Christmas we were moving just after the holidays, so I’m pretty sure we were just zombies through most of the festivities. I actually can’t remember.

This year, with more openness to friends and family, and more experience on our side we did better. So here are my tips based on very little experience getting it wrong and even less experience getting it right.

For families:

  1. No flashing lights. Please. They are frequently listed as problems for those with traumatic brain injuries and seizure disorders. As we saw at this year’s wedding, flashing lights do Jason in in about 2.5 seconds and he doesn’t even have a seizure disorder. They’re just too much. So please, if you want your loved one around for longer than a few breaths – turn them off.
  2. Low background noise. Concentrating on one conversation while family members all around him are having other conversations is super hard for Jason. In two hours of trying to concentrate in that type of environment he might use all the energy he would in a normal day. His ability to focus on conversation becomes even more reduced when there’s a catchy song or commercial in the background. So as much as you love your Christmas jingles – keep them quiet.
  3. Organize in advance. Gone are the days when a night out could be recovered from with a few extra hours of sleep. If you want your loved one at a dinner with tons of people, lots of noise, lots of brain work, and it’s going to go late, please make that plan in advance. It gives them time to store up energy, to make accommodations in their next few days to be gentle on themselves. Likewise, if you need them to bring a gift/ dish/ drink – plan it ahead of time. Going into a packed grocery store to search for ingredients and wait in line and battle conversations with the cashier and Christmas music and parking and, and, and just uses up energy that could be budgeted better if you give them the opportunity to plan ahead.

For those with TBI and their immediate family:

  1. Communicate. Seriously. This one is so hard, I know, I’ve been there. But families don’t know how to adapt if they don’t know what symptoms you are dealing with. I know this doesn’t guarantee it’s going to be pleasant or that you will be heard. But not speaking up guarantees you won’t be heard and can leave room for anger in the relationships. If you don’t want to say what you need, just start passive aggressively sharing this blog and let me speak for you! (Kidding. Please, give your family a chance to support you).
  2. Be kind to yourself. Take as much rest time as you can. When we were working with an Occupational Therapist in the first year she said having a schedule and routine beat out everything. So wake Jason up even if he’s tired because that’s the plan we agreed to. For us we’ve had to accommodate that. We try to stick to routine 80% of the time. But things like Christmas require so much more energy, and we want to see family, so we try to carve out extra hours for sleep. Where Jason usually sleep 9.5 -10 hours a night right now to manage symptoms, Between the 23-26 it was closer to 12-14 hours a day, broken up over naps and night time.

Our little twist. I try to speak mostly about TBI experiences that can resonate for others walking through this life. This paragraph is probably not an experience most people would enjoy but I loved. This year, at both Christmas Eve and Christmas day get togethers with our families, my parents and my parents in law sent Jason to sleep. My mom even sent me for a nap on Christmas day. I’m sure this would bother many people, I can even think of a time when it would have bothered me. But this small gesture spoke such kindness and understanding to us that my heart felt like it was being hugged. So often lately I find myself weary under the weight of being in charge of our life all the time, it was a beautiful gift to have someone else take control. But like I said, I don’t know that that is a universal feeling and so I would suggest caution to families that want to start telling their TBI loved ones what to do. Of course part of what made these gestures so beautiful was that it truly was what was needed by us.

 

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.