I chose my health over the job I loved

BY: ALYSON ROGERS

For two and a half years, I worked at a social service agency for youth in Toronto.  I worked as part of a team to provide basic needs and case management to youth from diverse backgrounds.  Every day was different; on some, I ran workshops and danced to Drake in the girls’ dorms.  On others, I spent hours in an emergency room with survivors of human trafficking that had just escaped their exploiter.  Whether it was a day of fun or a day of crisis, I loved my job.

I loved my job so much that I was taking classes while working full time, with the goal of moving up within the agency.  My job combined my passion of working with young people, ability to respond to sexual violence, and knowledge of disabilities.  I loved my job so much that I worked through multiple concussions when I probably should have taken a leave of absence.  I loved my job, but two months ago, I abruptly quit.

Photo by Daria Shevtsova from Pexels

My departure was shocking to my coworkers, the young people I worked with, and even to myself.  When people leave a social service job, they usually have something else lined up. I had no other job waiting for me, and it was not the time of year to be applying to master’s degree programs.  Quitting my job came down to a choice; my job or my health.  I chose my health.

In the span of a year and a half, I had four concussions at work. With new symptoms and challenges, this was the worst my brain injury health had been since my diffuse axonal injury in 2008. Even though I was able to do my job, I was on medication for the first time and felt like I was struggling to stay afloat in such a fast-paced and demanding work environment.

On top of what I was feeling physically, some of my coworkers didn’t take too kindly to the minimal accommodation (working day shifts) I needed.  My own disability began to discredit the knowledge I had of various disabilities that dated back to before I even I had a brain injury.  My goal was to move up within the agency, so I kept how much I was struggling to myself while sharing just enough to keep the accommodation I needed. It was a fine balance.

In the New Year, I took a short contract in another department; the work was similar, but I had the freedom to work at a pace that accommodated my brain injury needs.  A few weeks in, I saw a huge improvement in my health; I had fewer symptoms, felt less fatigued and was able to participate more in my life outside of work.  My contract ended early and I was expected to return to my previous position.  This also meant returning to brain injury symptoms.  I’d had a taste of a life that didn’t only consist of work and brain injury symptoms, and I wasn’t going back.

I got a doctor’s note, spoke to the appropriate external agency for support, and came up with my own ideas, but no further accommodations were available to me.  I always knew that the decisions I made as a Youth Worker could lead to repercussions, but I never thought my disability would be used to carry them out.  The writing was on the wall – I was done here.  As much as I loved my job, I loved my health more.

On the last day of my short contract, I packed up all my things with the help of a few friends and slipped out the back door. I knew I wouldn’t be back. A few days later, I quit from home by e-mail. I had previously booked a vacation that overlapped with my two-weeks’ notice, and used my sick days to cover the rest.

Everyone was surprised by my abrupt resignation because I loved my job so much, but was it really that abrupt? For over a year, I worked in an environment that simply tolerated my disability. When I spoke about anything, let alone disability, I was met with eye rolls, and a flood of unrelated and unfounded complaints were brought to my supervisor. The youth group I facilitated couldn’t get any support, but blossomed after I left. When I had a medical emergency and needed to go to the hospital, I was left on my own until a supportive co-worker found me. Two of my head injuries were caused by the same environmental factor that remained unchanged at the time of my resignation. Looking back, I should have quit much sooner.

I loved my job.  I miss the youth I worked with and the coworkers that supported me, but I have no regrets about resigning.  I thought picking between the job I loved and my health would be a hard decision when I was finally faced with it, but it wasn’t.

I can (and did) find another job, but I can’t find another brain so I need to keep this one as healthy as possible.

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Alyson is 26-years-old and acquired her first brain injury ten years ago. She graduated from Ryerson University and is a youth worker at a homeless shelter. In her spare time, Alyson enjoys writing, rollerblading and reading. Follow her on Twitter @arnr33 or on The Mighty.

 

A year with a different brain

A version of this article was originally published on March 18, 2017

BY: ERIN MOORE

On March 18, 2016 my husband Davin sustained a concussion.

I write this on the one year anniversary of my husband’s injury. It brings an incredible mix of emotions. It has been the hardest year of our lives; financially, mentally, physically and emotionally.

We have cried more together this year than we have in our almost 20 years of time with each other. We have been in dark places this last year, individually and side-by-side. We have battled this brain injury together, but alone.

Concussions are invisible to most. The terms the ‘walking wounded’ or the ‘invisible injury’ have been given to concussions because the majority of people surrounding someone with a concussion aren’t aware of what that person is braving, or managing, or being held captive by. I’m not writing this post to educate you on what a concussion is, or to understand post-concussion symptoms, you can go google that.

I’m going to share with you my experience – as a wife, a partner and a best friend of someone who has been battling concussion symptoms for one year – with no win in sight, and still far away from the finish line.

It was three months into Davin’s concussion that I really started to feel the first feelings of being scared. Davin had concussions before, and I had seen at times some very bad symptoms from it. But they all cleared up relatively quickly and he became his regular self again. Last June his neurologist told us to expect at least a year for recovery, maybe longer. This news shook him, and me, and it set off a whole new dimension for us.

Up to this point, it was almost like I had watched Davin run into a brick wall over and over again, trying to make strides towards a little bit of improvement but getting stonewalled over and over again. After the neurologist’s prognosis, Davin stopped running into that brick wall and just starred at it instead. The light of perseverance, determination, optimism and strength started to dim. I could see him fall into a darker place, faced with the reality that it was going to be a long time until he got better, and no one could tell him how long it could be or what he needed to do to get himself healthy again. The frustration mounted, when all the therapies, practitioners, counsellors, specialists, supplements, food eliminations, (you name it, we tried it) failed to work.

Sure, some people may have seen some snippets of Davin’s behavioural responses to his concussion, but they didn’t get the full picture. Most people saw the same guy they always knew, only off work, and unable to do his usual athletic and social activities. That’s what makes it really hard for people to understand what happens to someone when they are living with a concussion. There is a side that is invisible and unseen by most, even close family members. It’s uncontrolled, reactive, irritable and mean.

I learned quickly that I could never take anything that my beloved dished out at me personally. Davin – the true Davin – did not want to react to situations the way he did but he lacked the filter or response to slow down, think and choose his words or behaviour before acting them out.  The remorse and shame that follows an episode is equally hard to watch, as seeing Davin in emotional pain scratches and slices my heart over and over again. As his partner, there are so many times I felt completely helpless, and at times,  still do, as though I’m stuck in the path of the concussion’s unpredictability.

The cycle of a concussion is vicious. It first brings physical and mental pain, then triggers emotional pain, which trigger symptoms, which trigger depression and so on.

Ah that word – depression.

I’m scared of that too. A common byproduct of a concussion is this whole other layer of depression and the inability to balance emotions. I again played spectator to Davin as his depression started to guide him, as his clarity on life was now being mismanaged by a giant bruise on his brain and a chemical imbalance. His brain wasn’t firing like it used to and tasks that those with uninjured brains take for granted – like going to grab some groceries – were daunting and debilitating, resulting in frustration and anger. This would then trigger intense fatigue, malaise and depressive states.

How would you cope? Eventually we learned the patterns and together started to identify the triggers. We figured out a management plan and I stood by my man and let him just be, as he needed to be in that moment. No judgement. No resentment. Just love.

By this point we were deep in the summer months in Whistler, B.C. We had decided moving to Toronto was the best choice for us. We were down to one income, with Davin’s Short Term Disability payments ending at the end of June, we had both kids in daycare and we were starting to see for the first time in our adult lives that if we continued like this we were going to be in some financial strife quickly.

Managing his medical and disability applications were also incredibly taxing on Davin, and in September I took over full management and advocacy for his medical paper trail. We were banking on Davin’s Long Term Disability claim to be accepted and which would drastically turn things around for us. But, after six months of waiting for a decision, they denied Davin’s claim. We appealed. They denied us again. We appealed again, and one year later we are still waiting.

So now what?

How do we keep going when the concussion and depression continue to hold my husband in captivity of who he once was. How do we raise our kids so they understand what has happened in the last year but remain resilient to times that have been trying for them, and us. How do we show them that we are strong and brave and that we will get through this? That concussion won’t beat us.

I can tell you what we did, and do everyday, to do our best to stay above the concussion and depression. We allow us the power to choose.

Whistler wasn’t working for us at that time, so we chose to leave and went on an adventure, that was healing.

We chose to move across the country to be closer to family for support and for filling our heart up when we needed it.

We choose to ‘move slow to move fast’, words spoken by a wise confidant that have made all the difference for us.

We choose to do only a little bit, and not all of it, and manage each moment for what it is.

I chose to not go back to a job that would take me away from my family 40+ hours a week.

I chose to start a business to create a different path for our family where we can create and grow in line with the pace that Davin’s brain needs to heal.

I have days where I feel so alone, that no one truly understands what it is like.  I have days that are really hard. But despite the torture this last year has been, I have so many things I am grateful for that would not have come to be had this concussion not happened. I have learned, like to no level I’ve known before, what it means to be patient, to have compassion, to listen, to be brave, and to be present.

It’s taken me a long time to open up and allow myself to share the truth of my experience and allow myself to be vulnerable. I hope these words resonate with one of you readers.

Share my story.

Learn about concussions and talk about it, and keep talking about it. More awareness needs to be raised, more understanding about what those who suffer are going through. We need to show more compassion for those that live each day in a fog of their brain injury.  We need more support for ways to manage and cope for those with the injury and the people that are by their side.

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Erin is mom to two amazing children, and wife to an incredible husband. She has a love for travel, yoga,and bringing people together on issues that matter. 

The marvel of sight that remains

BY: COIRE LANGHAM

Since I woke up mostly blind in the hospital, my idea of vision has been changing.

PHOTO: BUTILIKETHAT.COM

Once all the swelling went down, slowly over the course of a few weeks, I was left with a left field deficit, double vision and neurological sight issues.

The doctors told me, “Your eyes are fine. Something is wrong with the optic pathways in the brain.”

What I’ve been learning since, is there is a lot more to seeing than just left, center or right field. It’s hard to describe ‘not seeing’ to those with ‘full sight’, and I’ve struggled to find the words to express what I could see and not see to family, friends and therapists.

The doctors told me that my vision would never improve, yet I am learning about sight in ways I have never thought about before. Almost a year after my tumour was removed, the brain continues to surprise me.

GRAPHIC: MERCK MANUALS

My right optic nerve was severed, and I lost over 50 per cent of vision in each eye. But nothing could prepare me for the mess my vision became. I had double vision, nausea, flashes and hallucinations.

The faces of people have been eclipsed by an unknown blankness which consumes everything. It’s a blankness that is so subtle, I could never see it. Like a parasite, it constantly steals from my sight – it takes part of every room, and half of any clock. It removes door handles, steals the fork I just set down, and takes away the first part of words, numbers and oncoming cars.

When I look in the mirror, I see a strange brown-eyed amalgamation of features whose sum I once recognized as me, but no longer. The integers have changed slightly but the sum is way off.

I can no longer see the love written on my wife’s face.

The triumphant, mischievous, unbounded, joyful face of my three-year-old as she sneaks out of bed is eclipsed and jumbled beyond meaning. Like the vestiges of an intense fire, structures are displaced, sunken, and twisted to the very edge of recognition.

PHOTO: SCIENCE.COM

Through all of this my perception of sight is changing. I see like music is heard, all at the same time. Shadows are hard to separate from their substantial counterparts, the minutia of details are a sea of information that is unable to unify into one fixed image.

Yet light is coming back into my visual world and it is so bright I am unaccustomed to it. The starkness of bright light and shadow is a sea of information that is overwhelming, but enjoyable at the same time.

There is a plum-tree in flower on the way to the hospital, and it takes my breath away each time I ‘see’ it. It literally feels good to look at, a riot of white and pink blossoms burning in the sky.

PHOTO: SALAM GHASHGHAEI

It’s like stumbling upon a bonfire while walking in the woods. The darkness is banished so completely it is hard to look at the flames and embers raising skyward.

It’s a phenomenon and a joy. I stand and smell the flowers, and they smell good. Visually, they are chaos in pink and white, blurred and doubled and shadowed and screaming, like a throng of rabid young children.

I am left nauseaus and dizzy, but I like it. I had much less of an understanding of the immense joy of sight, and though I’ve lost a bit, I am discovering a new understanding of the myriad of ways to enjoy it. Some plants are an absolute visual starburst of three-dimensional joy. A cacophony of visual stimulus.

That is what is changing, I think. When I’m tired and the borders of what I see all run into each other, like a bad impressionist painting, depth is helping me separate the world. I am perceiving depth more, just like when you loose a tooth and your tongue becomes preoccupied with exploring the new hole in your gums.

I see the space between objects, that strange new empty space that suddenly makes sense and conveys so much meaning. I missed depth terribly and never knew it was gone. We live in a highly visual world, more than I ever knew. Perhaps I am becoming more aware of the hole in my vision and cognitive of how some magic of existence has leaked out through it, and is gone.

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Coire Langham suffered a brain surgery and TBI over a year ago and lives in Toronto with his family – who are indispensable as he navigates a changed world. He enjoys the prospects of new community inside BIST, and drinking tea.

Interactions after a TBI

BY: SABA RIZVI

I think the hardest thing since acquiring my brain injury has been the inability to perform basic functions, such as reading, talking, walking, and just even being able to eat.

photo credit: Girl in Despair via photopin (license)

Even now, several years later, these functions still feel like a luxury.

Living with brain injury is usually an invisible disability. People may tell you to ‘try harder’, ‘not be lazy’, or that ‘you look fine, stop telling yourself there’s something wrong’. These people don’t understand that an ABI survivor’s best bet to recovery is putting their best foot forward, regardless of how they’re really feeling.

Ironically though, if you do try to live a normal life, these people will tell you that you are fine and they don’t believe that something is wrong. But when you are in such a bad state that you can’t get of the house, these same people will tell you to suck it up and stop being a baby. So, since I acquired my TBI, I appreciate those who have accepted the new reality as much as possible – the ones who have been patient.

Even something as little as needing space or not being upset if I need help reading, or if I just have the energy to stay home and watch TV are a big help to recovery. I also appreciate those who are not understanding, because it gives a more clear understanding of who you can trust or who is actually listening.

Saba acquired her brain injury in 2010, and is interested in TBI awareness and advocacy.

Let me tell you the one about having a brain injury …

BY: SABA RIZVI

Most people don’t understand what a brain injury is or means, especially if the person doesn’t appear to have a disability.

A brain injury is kind of like how older adults might experience memory loss, or other cognitive deficits. A lot of people share stories about loved ones going through dementia or Alzheimer’s, for example, and the impact this has on the whole family. They’re generally upset regarding the situation, but find solace in knowing that they’re too young to be experiencing something like that, and have at least the next 30 to 40 ears to live a ‘normal life’.

A brain injury is similar, except that it can happen to anyone, at any age. The effects of a brain injury range from someone appearing to absolutely ‘normal’, to someone in a coma. The person with a brain injury can have memory loss, difficulty eating, sleeping, reading, writing, and just carrying on normal activities. Most daily functions that people without brain injury take for granted, are a luxury for those living with ABI.

The other day I forgot what a selfie is, or that our phones even have a front facing camera. Today, I went through my contacts list, and I don’t remember half of the people on there. The memory comes and goes, or just goes for good, and every day is an adventure.

Living with brain injury is hard enough on its own, especially if you don’t look like you have a disability. As hard as it is now to avoid technology and overstimulation, both of which cause those with a traumatic brain injury immense difficulty, it helps to utilize technology to educate others about what is going on. The use of the ever so popular memes is a great way to spread awareness and include humour when educating about brain injuries. Others are more willing to learn slowly, and with a few laughs.

Here are two examples I have used to educate others about the symptoms of brain injury:

Is it the right time for a hidden disability symbol?

BY: RICHARD HASKELL

“You seem fine to me,” may be one of the worst things to say to a brain injury survivor – or anyone with a hidden disability – for that matter. This invisibility is one reason why Laura Brydges, an Ottawa woman living with the affects of brain injury, decided she need to do something to make hidden disabilities, visible. (You may have caught the recent Toronto Star article about her from a few weeks back.)

LAURA BRYDGES; PHOTO CREDIT: RG WHITE

Since that article, Brydges’ Hidden Disability Facebook page has hit 5.2K likes. She’s getting attention from organizations, individuals and media from all over North America and the U.K. But a really big moment was receiving a photo of someone from the U.S. using one of her cards.

“I have been overwhelmed. I can’t even describe the emotion,” Brydges said. Seeing that photo just touched me to the core, it made it real.”

Brydges stresses that making hidden disabilities visible is a safety issue. She lists incidents where not understanding hidden disability can have deadly results. There was a child with autism in the U.S., she says, who was shot by the police. In Ottawa, there was a child in school who has handcuffed because of misunderstanding a hidden disability. In Winnipeg, there was a veteran with PTSD who was physically kicked out of a bar because he had a therapy dog. Brydges finds these stories and posts them on her Facebook page, collecting articles which prove  her point, time and time again.

Like many brain injury survivors, Brydges faces significant obstacles in her daily life, most of which are hidden. She has problems concentrating and has a low tolerance for noise or bright lights. She cannot drive or use public transit. Being in a large crowd for more than a short time can cause her to become, what she refers to as, cognitively overwhelmed, sometimes to the point of tears.

Especially in the years right after her accident, Brydges says she couldn’t trust herself to be able to respond to an unexpected situation. For example, if someone on the street was having an emergency, she would have difficulty in processing information, to, for example, call 911. A frustrated first aid responder trying to enlist her help, repeating the message to her faster and louder to her would only make it worse.

Which is why, using nothing more than an interest in desktop publishing and sheer determination, Brydges designed a symbol consisting of a blue and white figure inside a circle with the words Hidden Disability on wallet-sized cards.

THE HIDDEN DISABILITY SYMBOL

Similar to the international symbol of accessibility for those with physical disabilities, the card is something Brydges feels could be used by those affected by hidden disabilities such as brain injury, autism or epilepsy. She calls it ‘a self-advocacy tool’ people with hidden disabilities can use to educate the public on the obstacles they face every day.

Brydges  began working on her hidden disability symbol in 2009. A year later, through Facebook, she found 592 adults to participate in an online survey about whether there was a need for a hidden disability symbol. The result:  80 per cent of the participants (the majority of whom had a hidden disability) agreed an international symbol was needed. A few years later, Brydges asked for feedback on how to develop the symbol, which originally was a checked figure. She changed that design after learning some people had difficulty processing it.

HIDDEN DISABILITY OPTIONS PRESENTED IN THE SURVEY

Brydges believes there’s a need for a hidden disability symbol, and the time is right for it. “I think people with hidden disabilities are ready. They’re tired of either living very small lives and not explaining themselves or having to explain themselves over and over again when they go out,” Brydges said. “They’re tired of people treating them poorly to the point of verbal abuse and sometimes to the point of physical abuse when they park in an accessible parking spot. Even though they have a permit. I think it’s just time.”

The hidden disability symbol could be her design or someone else’s, Brydges is all about the cause, and willing to let word about the symbol spread organically. She’s made the symbol available for download, with some stipulations, and is working on improving its print quality. The front of the cards can have the name of the condition on the bottom and the back can be customized to meet specific needs of each condition.

Brydges also believes organizations which serve people with hidden disabilities have to work together. “We’re stuck in this model of ‘I have this condition’ and ‘you have that condition’ instead of ‘when we’re out, these are the common problems with environments that aren’t highly conducive to our functioning,” she said.

Inspired? Brydges thinks Hidden Disability awareness would spread even further if she could get on The Ellen Degeneres Show. You can help make that happen by filling out this online form here.