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.
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
As I lie in my bed I breathe in and out while staring at the ceiling. I can feel all of the bones in my body as I stretch myself awake. I rub the sleep from my pupils and rise to a seated position.
I extend and wiggle.
I climb to my feet and slowly shuffle my way into the bathroom.
The mirror on the wall stares at me.
Two eyes to see with;
One nose to smell with;
A mouth full of teeth.
There are no physical scars or indentations on my head. There is no numbness to my face. My arms and legs have full motion, so there is no need for a wheelchair or use of any other kind of assistive device that can be seen. I know that not all injuries are the same, but still…
What is wrong with me?
Do they know what they cannot see?
I feel the skin on my cheekbones and look toward the mirror with pretty clear vision.
I sometimes feel that part of me is forever hidden.
Maybe it is not what they don’t see, maybe it is what they don’t understand.
While I may live with a brain injury, my brain lives without borders, and what I mean by this is that my limitations only go as far as I let them bother me. For me, one plus one may not always equal two, and what I need to do is come to the conclusion that this is alright. There is no shame in it. It hurts me to know that not everyone else can find this same reasoning.
Because of it though, I still often find myself waking up only to look into that mirror and wonder. What is depression supposed to look like? Is this chronic fatigue that I feel, this confusion and frustration, this struggle to retain information, this cognitive search for words that quite often get lost, this uncertainty that I am challenged with, the extra time I require and need to slow down, are these things real? Are these things a result of my brain injury?
But I know the answer to these questions. And even though it is a continuing struggle between what I feel and that which cannot be seen, I know. I know of the strength and of the beauty and of the patience. I know of the possibilities, the potential, and the greatness that lies within. I know that if you only allow your eyes to see, you can end up missing out on a lot.
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.
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.
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:
The challenges which affect persons with acquired brain injury (ABI) are not always visible. We may look exactly like you – we are stylish, and on really good days in quiet environments we can manage to stay focused.
ABI is the result of either a traumatic injury due to an accident or non-traumatic injury due to a stroke, brain tumour or substance use. Often when people hear “brain injury” the first thing that comes to their mind is intellectual disability. The truth is most people with ABI retain their intellectual abilities, but the brain injury may affect thought processing, making it difficult for a person to express themselves. The extra energy required for simple daily functions can leave our body and brain fatigued. No one day is ever the same.
While the effects of ABI and the challenges each person faces are unique, one thing we all seem to have in common is the (stupid) things people often say to us. From the perspective of someone who lives with ABI, here are six things you should never say to someone living with a brain injury:
Yes, the person may very well be “lucky” to have survived their accident, but when faced with all the challenges of the aftermath they may not see it that way. Or they themselves may be quite aware of how blessed they are to have survived and are doing their best to move forward. Some days may be easier than others. On the not-so-easy days or when someone is struggling with how blessed they are to be alive instead of saying “how lucky they are to be alive” tell them how much you admire their strength and persistence to overcome their current situation.
Whenever I hear this, I shake my head and think, “Seriously you just said that!” It is often said as if I made the choice to not work. Being able to work provides one with a sense of pride and ability to provide stability and independence for the future. This privilege is often taken away from someone who is living with a brain injury. When someone is forced to stay home due to pain and exhaustion it is no holiday. So, when you feel like you need a break from your job, don’t envy the person who is forced to stay home because of their ABI. Anyone who has lost control of their income potential will tell you they would gladly give up their forced non-working status to go back to work.
I have a brain injury, which is ahidden disability. It is not a cold or a flu. I am not going to be coughing, running a fever, have watery eyes, throwing up or blowing my nose constantly. Just getting dressed and daily personal hygiene tasks can deplete me of energy on some days, making it a challenge to do much more beyond “not looking sick”.
Depression, fatigue, chronic pain and apathy are very common symptoms of brain injury. These feelings affect one’s mood and ability to process information, deal with pressure and handle stress. They make it harder to do everyday tasks, much less handle extra activities.
Brain injury survivors require significantly more rest than the average person, which is often mistaken for laziness. This couldn’t be further from the truth, since our drive to exceed our energy threshold results in over-stimulation, which can leave us completely depleted, leading to setbacks and sometimes manifest as physical illness.
Sometimes in the middle of a conversation (for me, especially emotionally filled ones) I need to take time out. So if someone with a brain injury tells you they need to stop while talking to you, know that they NEED TO STOP NOW! It’s not that they are trying to avoid the subject, they simply need to take a break from “all the thinking” to process the conversation. Pushing the person to continue will only result in their complete exhaustion and a possible melt-down, which may set them back from being able to continue with any further discussion on the subject (or anything else) for days or longer.
Finally, brain injury survivors often have a really hard time with a change of plans. There is a lot of thought which goes into planning a day with non-routine or extra activities. The energy it takes to mentally process a last minute change of plans can zap one’s energy, which is often mistaken for not being flexible.
Unless what a person is about to do is going to pose risk to themselves or others, allow them time to complete a task. Tasks that once took seconds may take minutes or longer to do. Remember we are retraining our brain, and it takes time. Jumping in and taking over the task will trigger a sense of inadequacy, reinforce loss of independence, and may be viewed as being controlled. Patience is extremely important.
Limiting exposure to situations or environments which consist of loud areas, multiple people conversing, and excessive background noise is a coping strategy many people with ABI use to help prevent brain overload. We are not trying to be difficult or anti-social, we are just trying to avoid triggers that will over stimulate our minds and result in exhaustion. This is a survival mechanism, not a behavioural one. Stop making us feel guilty because we don’t want to attend the rock concert and come up with social activities that will not cause sensory overload.
Now that you are aware of how your words can impact someone with ABI, I hope you will choose them more carefully. And know that supportive words of encouragement go a long way in any situation.
Celia is an ABI survivor who is dedicated to helping others move forward in their journey and live the life they dream of. She is the founder of the internationally read blog High Heeled Life – inspiration for living a luxurious and balanced life; featured author in Soulful Relationships part of the best-selling series Adventures in Manifesting; a Peer Mentor with BIST; a regular speaker for Canadian Blood Services – Speakers Bureau; certified Life Coach, certified Law of Attraction Practitioner and currently working on her Mind Calm Meditation certification. Learn more about Celia and be inspired: visit www.HighHeeledLife.com or www.CeliaMLifeCoach.com
“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.)
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.
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.
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.