ABI Awareness & Support

Host site for the ABI FYI

Recently, I attended my first ABI support meeting. The event was also billed as an FYI workshop for people with ABI (acquired brain injury) and their care givers. The topic for the evening was one of 8 topics being presented by an occupational therapist during the month of March. March being brain injury awareness month.

The public facility provided us with a room that could comfortably accommodate the 15 or 20 people who attended. One thing that was immediately evident looking around the room at the attendees and seeing the different levels of engagement that no two brain injuries are alike. There were people with various degrees of mobility challenges. For some the injury was more noticeable than others even though ABI is considered an invisible injury.

Even though there was a specific topic for the evening, that did not mean all discussion or sharing focused on the selected topic. The loss of social cues that accompanies many instances of ABI was not an issue. The presenter was able to balance the needs of the participants to share with the goal of presenting the topic without being derailed.

What struck me was the level of acceptance attendees had for each other. There was clearly a non-judgmental tone to the group. I saw it as people having developed a certain level of tolerance given the struggles they might have gone through. Though I think ‘tolerance’ is not the most suitable word to capture what was happening. Rather, I would say, what was evident was  understanding, empathy, and a willingness to offer support. Support by simply listening to others. Support by simply giving a nod of acknowledgement. Support by simply giving a reassuring smile.

The session ran for about 1 hour and a half. It wasn’t till I was home that I realized how exhausted I was. This was most evident by the amount I slept the next 24 hours. I was too tired to sleep a full night. I made  up for it with a four hour and a one hour nap the next day. (If you can call a four hour daytime sleep a nap.)

Information is power

Since my injury I have read books, on-line articles and worked with an OT (occupational therapist) to understand my mTBI and make the necessary accommodations to keep my sensory loading within a manageable range.  I have also had the privilege of having a brain injury specialist shadow me  12 to 16 hours a day for a couple months. Each opportunity provided helpful hints at understanding how to deal with my limitations and understand a bit more of what is happening to me and how my body responds.

When I attended my second support meeting I realized that I could not have attended such a meeting six months ago. The level of loss that I noticed with some of the participants would have put me into emotional overload. Accepting my loss and limitations is something that continues to be a challenge. Accepting the loss and limitation in others leaves me emotional challenged as well. The emotional loading presents itself in different forms. It could be in the form of someone sharing a personal experience. It could be while listening to a first person account on the radio. It could also be from reading about someone’s story about loss. In contrast, when reading about loss in a novel it does not leave me emotionally vulnerable, because I know I’m experiencing the author’s fabrication.

Gradually I’m beginning to see the flip side of ABI. Rather than seeing the loss, I am beginning to see the abilities that are still possible. When I see people with ABI challenges I’m often emotionally overcome by the care and assistance that others give. It’s both the positive as well as the negative emotions that leaves me challenged.

What I Learned through the support group

Attending the ABI support meeting and workshop gave me a different perspective of my challenges. What I learned was very different from reading articles and digesting medical information. With the support group I experienced that:

  1. I am not alone in dealing with ABI. Others have their unique challenges in dealing with their ‘hidden’ injuries.
  2. Others are dealing with brain injury side effects that in many situations are much more debilitating. This leaves me with a sense of thankfulness that my initial injury wasn’t worse.
  3. I had the benefit of witnessing different kinds of behaviours that I might have been critical about had I not been attending a brain injury workshop. Had I witnessed this same behaviour in a different setting I might not have realized that the behaviour was connected to a brain injury.
  4. Acceptance and understanding of my limitations or limitations of another is not something that necessarily comes naturally. It’s something that takes time and effort to learn.

Topics which just scratched the surface

The following topics were presented during the month of March by the BIAPR (Brain Injury Association of Peterborough Region):

  1.  Recovery After ABI
  2. Optimizing Memory and Attention after ABI
  3. Conserving your Energy for Success in a Demanding World
  4. Communication after ABI
  5. Coping with Emotions after ABI
  6. Executive Functioning after ABI
  7. Sleep Management after ABI
  8. Sensory Changes & Sensory Hypersensitivity after ABI20190315_113445

These are only 8 topics related to ABI. And to think there are many more topics that relate to living with ABI. These 8 topics give a beginning glance at the complexity of living with ABI. For each person the challenges are unique and each have their own degree of severity. Each person’s way of compensating or making accommodations is different. In some cases the way a person compensates for their injury is completely opposite of how another person effectively compensates.

Here is one brief example. For me live music will very quickly put me into sensory overload.  For one of the attendees live music provides her the  stimulation that she needs; the louder the better. Wow!

I only managed to attend the last few workshops. Along with the handouts from the earlier ones, I was able to gain new insight into some of the ways that each of the topics impact my daily life. As people shared their experiences, the OT was able to expand her understanding of the topics. What became obvious during the sessions is that there is so much more to be learned about how the brain functions and adapts after a severe injury. In this setting it wasn’t a one way conversation with the OT giving information. In each session the OT was able to gain better insight into the finer points of living with a brain injury. Each person becomes the ‘expert’ of their version of a brain injury.

With increased understanding, comes the ability to add to one’s personal strategies for dealing with the daily challenges. It’s the challenge of living as a neurologically atypical person in a neurologically typical world.

More community support needed

The regional brain injury chapter had a one time grant to provide this valuable eight session service in our local community. Unfortunately there is no on-going funding to provide for a regular support group within 45 minutes of where I live. It was obvious from the few sessions that were held locally that there is an important need in my city.



Author: Jasper Hoogendam

After 36 years as an educator my career ended due to a TBI. Renewable energy as part of 'walking lightly on this earth' has been and continues to be my interest since my teen years. Since early 2015 I have been learning to live with ABI (Acquire Brain Injury). I don't want to let my ABI limit the goals I set for myself. I'm living with a different brain, not a lesser brain. In sharing my day to day successes and struggles, I am better able to understand how my life had changed and begin to accept the change. In sharing my experiences I'm hearing from caregivers and fellow ABI's. I'm encouraged when my experiences are helping others understand some of the complexity of living with ABI.

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