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/

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.

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.

 

Review: Learning by Accident by Rosemary Rawlins

A few weeks ago I shared a touching blog post by Rosemary Rawlins and realized I never published my review of her book. Learning by Accident: A Caregiver’s True Story of Fear, Family and Hope is her touching real life story of life after her husband Hugh was injured while cycling.

Rosemary writes beautifully and chooses her words carefully, so that with every description of an experience my heart was aching right along with her. I started this book multiple times during the first year of Jason’s injury and had to put it down every time I got to the chapters about being in the hospital immediately following Hugh’s accident. The fear and sadness was written so enchantingly I couldn’t help but relive Jason’s incident. If you have ever wanted to step into someone else’s shoes and understand the fear of losing your love, give this book a read. Likewise, if you want to understand the frustration that can come when dealing with the legal system and a brain injury, immerse yourself in her stories on dealing with the driver that hit Hugh. Rosemary’s candor will give you insight into situations you hopefully never have to live through.

Rosemary and Hugh’s story includes many, many acts of kindness and love from friends and family. It’s inspiring and a beautiful story of community. Unfortunately, this was an area I couldn’t see our story and I probably wept as much for the lovely acts of their friends as I did for our loneliness during Jason’s recovery. I think (based on many conversations, but no real research to speak of) that many families going through brain injury recovery become isolated and so I found it really lovely to hear about friends stepping up and showing love in a really concrete way. The friends and family described in Rosemary’s book are to be admired. For those of you going through as a caregiver I’m sure it’s not at all passive aggressive to highlight some of the stories and hand out copies to your own friends and family!

Finally, as much as I’ve discussed Rosemary’s writing technique, she includes a lot of information on brain injury recovery in general. She describes therapies and symptoms succinctly in a very accessible way.

A new version of alone

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

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

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

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

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

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

Osteopathic manual treatments for brain injuries

Treatment type: Osteopathy

How to find: http://osteopathyontario.org/

Price: In Ontario often $90.00-150.00 an hour

Credentials: Look for someone registered with the Ontario Association of Osteopathic Manual Practitioners, they will have a designation like these:  D.O. (Diploma in Osteopathy) D.O.M.P., DOMTP,  BSc(Hons), BOst, or MOst

What is it? From the OAO

“Osteopathic Manual Practitioners maintain, improve or restore the normal physiological function of interrelated body structures and systems, and, enhance the body’s natural ability to heal itself. They use various manual assessment and treatment techniques and modalities to help people of all ages  and backgrounds, who suffer injury, pain or other health concerns, by easing pain, reducing swelling, improving tissue mobility and promoting efficient healing.”

Notes from our treatment:

Osteopathy was the first intervention Jason used and we had fabulous results. That being said another friend with post concussion syndrome found his symptoms exacerbated by one of the osteopaths we saw and relieved by a second. Again, you need to trust your body and your symptoms to decide if this is something you need to incorporate.

Jason found most of his osteopathic treatments to be gentle enough that he could sleep during his time on the table -often followed by a 12-14 hour sleep at home! As we’ve mentioned sleep is an extremely important part of recovery from TBI and post concussion syndrome so this a very happy result of osteopathic treatments.

Treatments seemed to revolve around lowering Jason’s stress levels and working on endocranial spasms which are present post injury. The first and only times we heard of endocranial spasms was with Jason’s osteopath and I have yet to find a good resource for explaining this phenomenon in laymen’s terms. My understanding is that it is quite literally a spasm in the brain due to trauma and osteopath’s are able to help release it. Other treatment goals included working to relieve tension through Jason’s back and whole body alignment.

Because the treatments were gentle and resulted in measurable changes in Jason’s sleep and alignment osteopathy became a very important part of his recovery. One of the osteopath’s we worked with was Ryan Richardson in Newmarket who has extensive history researching concussions and post concussion syndrome – I encourage everyone to check out his qualifications and abstract listed here: http://www.youroptimalhealth.ca/concussions.

Massage therapy post TBI

As a massage therapist, I’m fairly biased on this subject. I believe my colleagues and I can do a lot of work to contribute to pain reduction and calming down the nervous system. I’ve seen a lot of great benefits from registered massage therapy in the post concussion/ post TBI group but of course this remains an individual journey.

Treatment type: Registered Massage Therapy

How to find: http://www.cmto.com/

Price: In Ontario often $85.00-100.00 an hour

Credentials: Look for someone registered with the massage therapy college in your province, I’ve linked to Ontario’s college above

What is it? From the CMTO

“Massage therapy consists primarily of hands-on manipulation of the soft tissues of the body, specifically, the muscles, connective tissue, tendons, ligaments and joints for the purpose of optimizing health.”

Notes from our treatment:

Due to the visual issues Jason experienced (non diagnosed until 1 year into recovery) his gait changed drastically, from a strong confident man to a gait similar to that of a stroke survivor. One side shuffled more than walked and he had acute low back pain repeatedly in that first year.

Massage therapy with some of my colleagues in our hometown alleviated a lot of to his pain and helped even out tone between the two sides. Registered massage therapists are educated in anatomy and physiology and were able to assess his range of motion and tone throughout his upper body. While some areas were uncomfortable to be worked Jason always felt relief post treatment. Often the chance to lie down mid day and have a massage also lead to a deeper sleep in the evening.

As a massage therapist I find with most of the clients I work on slow, gentle manipulation goes much further than the adage “no pain, no gain”. It’s not necessary to be in pain throughout your whole treatment or feel like you’ve been hit by a truck post treatment. Registered Massage Therapists in Ontario are educated use range of motion exercises and stretching as part of their treatments which can help significantly if you are experiencing any symptoms of decreased mobility or coordination on one side. All treatments should be explained to you before you get on the table and your massage therapist should be checking in with you about pressure and if you understand and want the treatments they are proposing.

Finally, I’d like to remind everyone reading that in most treatment facilities some of the environment can be altered – I often turn off lights or music to help those with sensory issues post TBI. Your therapist may not know to suggest these accommodations so please ask for anything you need to maximize your benefits from the massage. Also don’t assume because you have a head injury your treatment must be localized to head and neck, as in Jason’s case often symptoms show up throughout the body and a global approach to treatment can be beneficial. Communication with your massage therapist is key and will help you decide if this is an intervention to include in your rehab program.

Treatments we’ve tried

A few weeks ago we spent some time outlining the traditional treatment options (OT, SLP, etc) that we pursued in Jason’s recovery.

Over the next few weeks we’re going to discuss some of the other treatments we’ve sought out such as osteopathy, Matrix repatterning and Naturopathic medicine. Of course we’ve already shared our story about how behavioural optometry has helped Jason and will continue to update how we see changes from that intervention.

It’s important to us to outline that not every treatment is right for every person and none of our stories should be taken as prescriptions or orders to seek out a new treatment. We’re lucky that I work in the health field and have called in favour after favour to get Jason seen by people I trust and refer to often. Within my practice I treat many individuals with traumatic brain injuries and we share stories and names of practitioners on a regular basis but that is no guarantee that results will be consistent. Every brain injury is different, every individual is coming into treatments at different levels of functioning and health and results will always vary. If a certain treatment story resonates with you I encourage you to read the links I include in every post and find a good fit for you. Geography and financial limitations will also come into play during your journey with TBI and you always need to make your own decisions that suit your lifestyle.

On the note of financials, there are a lot of studies that show that those with TBI often have to file for bankruptcy or are faced with financial troubles. In just over a year we’ve thrown about $40 000.00 at brain injury treatments (including lost income because that is part of recovery in my mind). No one, including us, can tell you what your financial investment should be in your brain or how you decide that. We’re gut reaction people, if research resonates with our story and the practitioner seems like a good fit that listens to both of us, we tend to try our hardest to afford the treatment. If a treatment doesn’t seem to change Jason’s quality of life within the first few sessions we will always discuss with the practitioner but then decide for ourselves when to stop treatments. We try our best to not regret our decisions but there’s never any clear answers.

I am sure you are doing your best with recovery and we only want to share our experiences to offer options. This remains a very individual journey so please make your own decisions with care and be gentle to yourself.