My traumatic brain injury: Sister caregiver experience.

BY: SAMIRA OMAR

I remember the last thing we did as a family. A week before everything happened we celebrated Eid Al-Fitr.

For those of you who are not aware, Eid is a Muslim festival that happens twice a year where we get together with family and friends, and share a big meal. Both Eids have distinct connotations. In particular, Eid Al-Fitr represents the celebration of 30-days of fasting known as the month of Ramadan. Eid is one of the happiest days of the year and to top it off, that Eid occurred on a hot summer day.

Close up of a plate of food served at Eid
A dish served at Eid Al-Fitr, Photo courtesy of Samira Omar

My family has nine children, and a total of 11 people, so traveling together is always challenging. That day, for the first time in a while, we all went out together. It was an amazing experience, one that we spoke of for days after.

I’ll never forget the way I felt when I first heard the news about my brother. I can vividly recall it as if it were yesterday. The same couple of moments and memories consistently flood my mind, and even though it has been over three years since it happened, I think about it every single day because it completely affected and changed all aspects of my life.

I can remember seeing him leave the house, and every time I closed my eyes I saw my brother’s face at the forefront of my mind. I can speak for everyone in my family when I say that my brother’s traumatic brain injury changed our lives because it affected every aspect of our daily living. Having said that, I always felt like it affected me the most.

Because of who I am as a person, and the role I play in my family dynamics, I spent every day at the hospital for two and a half years while my brother received care. I saw things I can never un-see. My time at the hospital changed every aspect of my life, and how I perceive the world.

3 empty hospital beds
PHOTO: 1662222 via Pixabay.com

With so many siblings in my family, naturally, some of us are closer than others. My brother and I were, and are, very close. We told each other everything, and we always trusted one another. All of that factored into how much it really impacted my life, emotions, and day-to day-thinking.

Imagine one day you woke up in a hospital bed not able to do many or most of things that you were once able to do. How would you feel? Now imagine knowing that what happened to you was the result of a violent assault. These thoughts never left my head and I would constantly put myself in his shoes and think, “How would I feel if this were me?”

The doctors said my brother had an extremely poor outlook, and a slim to none chance of a meaningful recovery. These were the exact words that were used. It seemed as though everyone was treating him like he would not have a future, I never took that to heart. I could not give up hope.

There was and is still not a lot known about the brain. During this time, nothing else mattered but making sure my brother was doing well and being looked after. I did not feel comfortable leaving him in the hands of strangers, especially considering they did not believe he would get better or have a ‘meaningful recovery’.

A picture of a purple flower coming up through the snow,

I went on the Internet every day and looked for more information on traumatic brain injury. I read stories that people have shared based on their experiences. At the time, I felt like I was the only one who believed and had hope my brother would get better. It was the hardest situation that I have ever faced in my life as every day was a constant battle in making sure that his voice was heard, and he received the best care possible.

As the eldest daughter of nine children, and the daughter of immigrant parents, I felt as though it was my responsibility to always look out for the family by using my voice and knowledge to help them make decisions.

Everyone always came to me for support and advice. Yet, in this situation I did not know what to do. It felt like life was moving 200km/hour, ­much faster than I can actually process what was going on.

I was just trying to get through each day not knowing what would happen the next second, minute, or hour. Comforting everybody else was my way of coping because it was one thing to see a sister or brother cry but to witness my parents falling apart only meant what was happening was actually real, and I needed something to hold on to. Positive thinking, and remaining optimistic was the only way I would have been able to get through it all without losing my mind.

I often felt like I was alone but I always remained optimistic. I wanted to give my brother every chance to come back to who he was, and if I did not believe that it could be possible, I felt like I was robbing him of his potential to successfully recover.

A picture of bullrushes covered with snow

Consequently, I would spend 18 hours a day in the hospital, every single day for the past two and a half years that he was hospitalized. It never occurred to me how much time I spent being in a hospital.

I never once thought about myself as a I sought comfort from knowing what was going on in each step of his care. Without giving it any thought, I made the decision to never leave his side and put everything else in my life on hold. I felt guilty if I was doing something that made me happy but did not involve him. I couldn’t think about myself knowing my brother’s suffering.

At the time when this happened I was an undergraduate student. During my free time I used to volunteer at hospitals, engage in various extracurricular activities, and enjoy time with family. Since this happened I felt like I lost all motivation to continue living my “normal” life as nothing about it was normal anymore.

I put the word normal in quotation marks because it is a subjective term. It was extremely difficult to see someone I knew all my life suddenly go through all these struggles, challenges, and difficulties in everyday activities that as able-bodied humans we took for granted.

Furthermore, I found it particularly difficult to balance out what was important to me as I constantly thought of his well-being and would spend most of my hours at the hospital. My rationale for why I was happy to take on such a role was that I wanted everyone in my family to feel content, and not be overwhelmed with what was going on.

Most importantly, I did not want to see everyone miss out on life, friends, and the things that they use they use to do on a regular basis. It was easier for myself to take on this role and still be in high spirits with missing out on the daily things that I used to do, however, the rest of my siblings were just kids, and I did not want to rob them of their childhood. It seemed as though everyone was able to get back into their daily routines and still do what it was that was important to them such as school, and work but I just could not move past this part of my life.

As a caregiver, it is easy to forget about yourself as you are constantly caring for another individual day in and day out. I tended to bury my emotions and how I really felt from others. I never spoke to anyone about how I felt because I did not want to consciously think about it. Everything seemed surreal, and I could not come to terms or accept the situation.

It is through this experience that i have found something that I am immensely passionate about, improving and enhancing the lives of TBI survivors, and their caregivers

Whenever I thought of the circumstances, I felt lost, out of place, and that nobody knew how I was feeling or what I was going through as most of the time I would be alone at the hospital. Nothing in life prepares you for this nor do I think there is a manual out there that explains how to feel, what to do, and to how to cope when situations like this happen. Even if information like that exists, I strongly believe that every situation is unique in its own respects and that there are many other variables to factor into the equation.

“So the hospital phase is over, isn’t that awesome, now you can finally get back to your normal life!” This is what most people said, and the reality is that after you leave the four walls of the hospital, another chapter of the rehabilitation journey begins. It is a whole new world when you have been away from your ‘normal’ one for such a long time, and many people are not aware, or understand what that means. What happens next? What is life going to look like in the next five years, or even two? Nothing is certain, and every day should just be taken as it comes. Recovery is a lifelong process, no matter what the gains.

Fast forward to over three years since it happened, and about 11 months after leaving the hospital, I can say my brother is doing very well and is much happier to be home. He looks very healthy, much like his old self.  I am dealing with the challenges of returning to my old, previously ‘normal’ life, which doesn’t seem normal anymore.

Motivated to return to the life he once had, my brother never gives up. He works hard every day, challenges himself to new lengths, in therapy sessions with his occupational therapist, and physiotherapist, and in everyday tasks.

He once said, “What is it that I will do for the rest of my life? I want to do this, be this, and go here. There is nothing that I cannot do if I work hard. Yes, I had a TBI, but that does not define me, it is just a part of me. I’m still the same person, do not treat me any different.”

I am an avid believer of this quote from Indian author Ritu Ghatourey:

Everything happens for a reason. That reason causes change. Sometimes the change hurts. Sometimes the change is hard. But in the end its all for the best.

I want to take this moment to say that given how horrible and scary this situation was, I am deeply grateful for all that I have witnessed, and learned over the past three years. If it was not for this situation, I would not have known how little people know and understand about the nature of TBIs, the various stigmas and assumptions that society fosters, and how this shapes and influences the ability to successfully reintegrate back into the community, and work as rehabilitation is a lifelong process.

The lack of understanding and awareness in society is a major barrier to successful reintegration, and is a public health concern, considering that TBI will be one of the major leading causes of death and disability by the year 2020.

I made meaning of this situation by believing that for me what had happened was a turning point to help me realize where my passions lie, and what it is that I want to commit to for the rest of my life.

Before this happened, I learned about TBI in my studies but I never once imagined what it would look like first hand. I never understood what it meant to be able-bodied, and to be able to do day-to-day things that we normally do not think of and have taken for granted. Furthermore, I never realized how difficult it was for someone to get around if they were on a wheelchair, and this includes going to the grocery store, the park, or even the bank.

It is through this experience that I have found something that I am immensely passionate about, and it is improving and enhancing the lives of TBI survivors, and their caregivers.


Samira is an MSc Candidate at the University of Western Ontario, in the Health and Rehabilitation Sciences Program, specializing in Health Promotion. Her current research focuses on oral health in traumatic brain injury, where she is qualitatively exploring the lived experiences of health professional students in various rehabilitative programs such as occupational therapy, physiotherapy, speech-language pathology, and nursing.

 

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