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.


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.

 

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Yoga Brain

BY: ALYSON ROGERS

Before my brain injury, I was convinced yoga wasn’t for me; I was a year-round athlete and long-distance running legs were not yoga legs in my mind.

After my brain injury, I was convinced yoga wasn’t for me; I went to a few classes and struggled to keep up and do the poses.  I usually left with a headache and feeling defeated.  Ten years and 6 concussions later, I practice yoga everyday – both on and off the mat.

In 2017, a bad concussion completely changed my lifestyle. In under a year, I went from an active person who went out for drinks with friends after work, to someone who stays home due to fatigue and symptoms; someone figuring out a new life on medication and alcohol-free.

I’d like to say there was some magical movie moment where I wandered into a yoga studio and found my place, but in reality, I dusted off the yoga mat I never got around to donating and rolled it out onto my living room floor because I had nothing else do to at home.  I remembered poses I had learned in classes and did simple stretches. I was pleasantly surprised at how good I felt afterwards and kept coming back to my mat. I’d found a practice that didn’t hurt my brain, but benefited it.

Fast forward to November 2018. I was searching Myrtle Beach for a yoga mat while I was on vacation because I couldn’t imagine going four days without one. Yoga had become a huge part of my life. I practiced at least 3 times a week, was seeing improvement in my flexibility, recognized how good yoga made my mind feel, developed an interest in spirituality, began exploring meditation, and was reading yoga books, including Yoga Girl by Rachel Brathen and Yoga Mind by Suzan Colón.

The physical and philosophical aspects of yoga did more than make me flexible and centre self-care in my life; it helped with my concussion symptoms and how I feel about having a disability.  After I started practicing yoga, I noticed improvements in my concentration, balance, spatial awareness and other physical symptoms. I also saw improvements in my mood and overall mental wellness. Learning about the philosophical tools of yoga allowed me to have a healthier and honest perspective of my current concussion issues, and having a brain injury in general. I’d found something that was both beneficial for me, and that I could do no matter what symptoms I was experiencing on a given day.

I’ve written about my brain injury for years and decided I would write about the benefits of yoga for brain injury in the hope of helping other survivors, but I didn’t. If I was going to do this, I would have to be honest about the emotional and mental symptoms of brain injury I had experienced; I was ready to write about it but not attach my name and face to it. Stigma lives on and it was staring me in the face; what if someone from my workplace saw it?  Would people think I’m “crazy”?  Would I be taken less seriously?

This is how Yoga Brain came to life on Instagram (@yogabrain).  I created an anonymous account to talk about yoga and brain injury. At first, I didn’t show my face in any photos; if someone I knew saw it, they would know it was me, so it stayed hidden for quite some time.  Slowly, I started to show me face, and 6 months after creating the account, I put my name on it.  The shame and embarrassment I felt about brain injury symptoms I had never talked about faded away, and I was ready to be a face for more than just physical brain injury symptoms.

Since creating Yoga Brain, I’ve had the privilege and pleasure of connecting with brain injury survivors, yogis, yoga teachers and organizations all over the world. I was invited to be a guest on the Concussion Talk podcast and have been featured by Can Recover, Beyond Concussion and Fierce Calm. Brain injury can feel like a lonely place, but by putting myself out there, I’ve learned from others and used my experience to support other survivors.  My posts document my yoga journey, brain injury journey, and my new life that includes travelling (something I never thought I’d do after my brain injury).

Yoga Brain and my love for yoga took me on a journey I never expected. I recently finished my 200-hours Yoga Teacher Training Certification…in California.  I’m not sure where this will take me next, but I can’t wait to find out.


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.

 

 

 

 

 

 

 

I. Am. Awareness.

BY: MARK KONING

Here we are into the month of June and Brain Injury Awareness Month.

Every year I wonder of its impact. What minds are being awakened and new things learned? Do people come to an understanding of what it’s like to live with brain injury? Are folks even paying attention?

Are all of those awareness campaigns ever enough?

Over the years I have attended various conferences, and volunteered as a peer support mentor. Of all the survivors I meet and all of the voices I listen to, the common theme I hear over and over is of people feeling alone and misunderstood.

I am misunderstood, often. I feel like people hear me, but don’t listen.

“Hello, is anybody out there?” I want to scream. “Do you get it?”

But when I really think about it, contemplating my own thoughts and replaying conversations, I realize: isolation is not winning. Hopelessness and ignorance do not always come out on top. People care, learn, and adapt.

I am a graduate, I am honoured with diplomas, I own a home and have a good job. From everything I have accomplished, and through all of the challenges I have faced, I have learned.

As a brain injury survivor and advocate, people applaud my presentations; they enjoy my blogs and value my mentorship. A written memoir of my life and challenges with brain injury has gotten respect and admiration.

I. Am. Awareness.

Mark Koning's UnMasking Brain Injury Mask

Everyone who speaks up and moves forward is awareness.

Life is awareness. It is happening all of the time, more often than we, or I, may think.

Is it enough? I don’t know the answer to that. Is there ever a time we should stop moving forward? To stop learning and teaching?

Helping to create brain injury awareness is part of me and who I am. It is part of a lot of us. And it is all of OUR legacy, being aware, creating hope, understanding, and inclusion.


Mark’s passion to lend a helping hand, offer advice and give back, has developed into a moral and social responsibility with the goal of sharing, inspiring and growing, for others as well as himself. His experience as a Survivor, Caregiver, Mentor and Writer, has led to his credibility as an ABI Advocate and author of his life’s story, Challenging Barriers & Walking the Path. Follow him on Twitter @Mark_Koning or go to www.markkoning.com.

Why I spend (most of) my weekends at home after brain injury

BY: ALYSON ROGERS

A brain injury can come with a variety of symptoms, from visual disturbances to changes in personality.

I have a diffuse axonal injury – a fancy term for damage to tissue in multiple regions of the brain – and the most significant symptom that comes with such a fancy term is fatigue.

When fatigue is present at all hours of the day, down time is precious. I work full-time, and anything beyond that requires a lot of thought, caffeine and an understanding that I need to be in bed by 9 p.m.

Unlike other symptoms of brain injury, fatigue is predictable: if I’m not at work, I’m probably at home. I may leave the house for a few hours on a weekend, or not at all.

My friends often ask what I do when I stay home, how can I stay occupied for all of those hours?

picture of Alyson's home: a picture on the wall of a door with a pillow on a white table that reads 'live, laugh, love' a coffee pot, mug and flowers on a wooden table. Coffee cup reads 'go away I'm reading'
PHOTO: ALYSON ROGERS

My days at home start with the relaxation essentials: my diffuser and candles. Trust me, whether you want to feel relaxed, energized, renewed, happy or sleepy, there is an essential oil and candle for that. I take an opportunity to stay at home as one to take care of my body and feel good. This means alternating between sipping tea and water while I light up the diffuser and candles.

The reason I stay home is two-fold; I’m staying home because I’m exhausted and I’m staying home because I need to rest up for the week ahead. The more brain injury symptoms I’m having, the more likely I am to be on my couch.

Essential oils
PHOTO VIA PEXELS

While I spend some time watching movies and television, I can’t sit for hours doing this. My favourite activity when Netflix is off is reading. I usually have a lot of books on the go depending on my mood, including crime books, academic reads and something light, like Mindy Khaling. My other favourite activity is Sudoku, the extreme sport of the brain-injured. (On a side note: if you have any unused Sudoku’s from your newspaper, let me know!)

This down time has also given me more time to write. Beyond the BIST Blog, I also write for The Mighty and have contributed a personal essay to a feminist comedy book coming out in the summer.

Since I moved into a one-bedroom apartment and got an adult job, I have become obsessed with decorating (and redecorating) my apartment. I have decided that if I’m going to be spending so much time at home due to my disability, I’m going to make my home beautiful. I’m a big fan of fake plants as they are self-sustaining and do not care that I am a bad plant mom.

This may sound boring to the able-bodied as there are plenty more interesting things that one could be doing with their weekend. As a person with a disability, this works for me and ensures I’m able to show up for who and where I’m most needed.


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.

 

 

 

 

I live with brain injury: walk a mile in my shoes and you will understand

BY: LEAH DANIELLE KARMONA

Living life with a brain injury is difficult. People who do should be commended for trying their best and never ridiculed for their situation.

Everything takes more time to do. Depending on which part of the brain is injured, your hands may not work right, you may have learning challenges, your speech may be hard to understand, mobility may be an issue, you may have personality changes, your reaction time may be slower.

Living with brain injury

Everybody says, ‘Just stay positive about it.’ But they don’t live with a brain injury. People say the most inappropriate things like, “Oh you have got to be less sensitive about this.” They aren’t in my shoes. They have no right to say this. A brain injury can cause massive problems. People don’t realize this until they actually have lived the experience of someone with a brain injury. Then they realize, “Holy Hell!” What did I sign myself up for here? I know nothing about living with a brain injury.”

And then a whole new life begins. People who live with a brain injury are heroes and should be commended for doing their best. Walk a mile in their shoes and you will understand.

 

 

Dear Brain Injury,

BY: MARK KONING

Dear Brain Injury,

Where did you come from? I never asked for you. You snuck into my head and caused a great deal of damage when I was a young boy, defenceless to your attack. You tried your best with your seizures and placing me in a coma. You robbed me of memories, physical strength, speech, and understanding. You made me feel trapped.

You tried to pull me into the abyss, but I would not go. I would not surrender.

With all that you stripped of me, I somehow made it back.

Photo of a journal: Secrets of a Brain Injury Survivor
PHOTO: MARK KONING

Maybe it was the love of my mom and dad, or my little sister who wanted her big brother back. Maybe it was my friends who wrote me cards and drew me pictures while I was lying there, motionless. Maybe it was something you just could never quite take away; my heart and my soul. My character.

Somehow you managed to shield yourself from my awareness and understanding. You did this for quite some time. And while I knew something wasn’t right, I just didn’t know.

I want you to know that despite trying as hard as I did and always, sometimes blindly, moving forward, you still made life growing up, difficult. Challenging. Torture.

But I kept moving.

I never wanted you.

But I kept moving.

People didn’t and still don’t, understand. I don’t necessarily understand.

Dear Brain Injury, when you knock me down I get back up. I will ALWAYS get back up. - Mark Koning Person wearing a grey hoodie, from the back, looking at the oceanBut I keep moving.

You are an unwanted guest, still lingering after all of these years. Hiding in the shadows like a monster. In my weakest moments, or sometimes when I’m just not paying enough attention, you unleash your poison. You bring about the pain, the fatigue, the frustration and the tears.

It is hard for me to know that others don’t see my unwanted guest. It is hard for me to know that you refuse to leave. But despite these things, despite how tired and angry I get, I know. I am the strong one, you are the weak. This is my path; and in a weird and strange way, you are the one who is now trapped.

Because I realized something that I don’t think you ever intended; it is NOT the end. I am a Survivor. Not just of the initial impact, of my time in the hospital, but every day. I survive; I thrive; I learn; I grow. And when you knock me down, I get back up. I will ALWAYS get back up.

Truly, NOT yours,

Mark


Mark’s passion to lend a helping hand, offer advice and give back has developed into a moral and social responsibility with the goal of sharing, inspiring and growing – for others as well as himself. His experience as a survivor, caregiver, mentor and writer has led to his credibility as an ABI Advocate and author of his life’s story, Challenging Barriers & Walking the Path. Follow him on Twitter @Mark_Koning or go to www.markkoning.com

The waves of ABI-related trauma

BY: MARK KONING

If you ask me, any type of brain injury is traumatic, whether it is acquired by a motor vehicle collision, an aneurism, a viral infection etc.

Living with the challenges of ABI, which can include headaches, nausea, fatigue, chronic pain – among other countless symptoms – can be brutal, and this brutality often comes in waves. Brain injury is often invisible, episodic, and quite often, not understood.

Sometimes I think the real trauma of acquiring a brain injury comes after the actual injury itself. I think many survivors of brain injury handle the initial challenges of their injury better than the ongoing aftermath, the reactions from others to their injury, and their own mental well-being.

Sometimes I think the real trauma fo acquiring a brain injury comes after the actual injury itself - Mark Koning

I am happy for those that try, for those that don’t turn away. I am lucky to be in the position I am and to have the support I do. Nevertheless, at times, it feels as though the trauma continues.

There are times I think it is my fault: for pushing myself too hard, or for not saying enough. There are other times I simply want to yell and scream. Sometimes I even get confused and scared simply by looking in the mirror and questioning my own feelings.

I don’t want to explain what fatigue means for me, I don’t want to justify why or how it is that I just know my headaches are not the same as yours, I want to stop feeling stupid every time I forget something and I see that look on the faces of others.

The trauma lives on.

I am doing the best I can.

I don’t want anyone to feel sorry for me, I just want them to understand. Because if others can start to do that, perhaps I can keep moving forward without feeling like one step up means two steps down.

Then maybe, I can put the trauma to rest.


Mark’s passion to lend a helping hand, offer advice and give back has developed into a moral and social responsibility with the goal of sharing, inspiring and growing – for others as well as himself. His experience as a survivor, caregiver, mentor and writer has led to his credibility as an ABI Advocate and author of his life’s story, Challenging Barriers & Walking the Path. Follow him on Twitter @Mark_Koning or go to www.markkoning.com