Early on when I was asked about my ABI (Acquired Brain Injury) a common observation was “It must be frustrating.” My response at that time was, “I’m glad my injury wasn’t worse.” I felt blessed for each activity I could do, even if it was at a significantly reduced level.
That was then. Now almost four years into living with ABI I must admit there are definite frustrations. The frustration of bumping up against my limitations happens more often than I would like. As a result I regularly need to curtail activities leaving me with a growing sense of isolation.
Pre-event Planning
(One could also call it ‘prevention’ planning.) When I’m anticipating a significant event I try to ramp down my normal activities for a day or so before hand. That is an attempt to lower my sensory loading and build up some resilience through having additional reserves. The lower my sensory loading is before an event the better I can fare during a social event.
What interferes with my plan of reducing my sensory loading ahead of an event are the external stressors that life sends my way from time to time. These stressors interfere with my attempts to reduce my sensory loading. This most recently included two and a half hours of dental prep work for a triple crown procedure.
Event attendance
During a social event I make a point of being mindful of my level of sensory loading. I make a point of taking a break at regular intervals or as needed by going for a 15 or 20 minute walk. Finding a place, preferably outdoors, away from the crowds, noise or activity.
The more crowded the venue and the noisier the venue the more frequently I need to take a ‘time out’. I seek out one-on-one conversations rather than joining in on larger group conversations as a way to conserve my energy. Engaging in group conversations has an exponential affect on my cognitive abilities, putting me at greater risk of neural fatigue.
Once I reach my limit on neural fatigue I can no longer function in a social setting. My only option at that point is to head home. If I’ve let my neural fatigue advance too far I need to request a ride home. (Kind of like needing a designated driver when one’s alcohol level gets too high.)
Post event
After a social event I need time to recover. The more significant the event the more time I allow myself for recovery. It isn’t always easy to gauge the amount of time needed for recovery.
Recently I attended a outdoor community event. I choose not to buy tickets to enter the venue even though several other family members were attending. I did not expect my endurance to be long enough to warrant buying a $30 ticket. I took in the event from outside the perimeter fence. That allowed me time to engage with a few people while listening to the music. Within a half hour or 45 minutes I realized I needed to leave. The music was too loud and the percussive quality of the base was affecting my body. Developing a headache very early on was a key indicator that I needed to clear out.
The next morning I felt fine. I figured the good night of sleep had given me the necessary recovery. I decided to attend our local church service. Within ten minutes of entering the church I was overwhelmed. It became rather obvious that I was far from having recovered from the brief attendance that the previous day’s community event.
More recently I had attended a wedding reception for a nephew. I had been very mindful and took regular ‘time out’s’ during the reception. I was able to take 20 minute walks along a road that followed the shoreline of the bay. After several ‘time out’s’ I developed a headache. Once again I realized it was time to clear out.
Coming away from this more recent event my body was giving me several signals that pointed towards needing a longer recovery time. The signals included:
- a headache – low grade but a clear signal that I knew I should not ignore
- neural fatigue – having difficulty initiating conversation or responding to others
- physical fatigue – difficulty with muscle coordination affecting my gait when I walk and unable to carry heavier objects that I otherwise have no difficulty with. Muscle pain in area that normally are not an issue
- unable to sleep – feeling exhausted yet unable to sleep. Two hours of lying awake before getting some sleep.
- unable to wake up properly – Getting out of bed in the morning but not feeling awake.
Due to the need for more recovery time with my most recent event, I decided it best to cancel my plan to attend a family member’s art exhibition. As much as I was looking forward to the art exhibit, I knew it was senseless to try to attend. The drive up and back would be an issue. To go to the event and bow out after ten minutes, as happened the previous week, would make the trip utterly senseless.
Social isolation
The ongoing challenges with ABI as it pertains to attending events is becoming a noticeable source of frustration. I’m experiencing a growing sense of isolation. I feel like I am missing out on things during an event or by declining invitations for other events.
There are various factors which contribute to the sense of isolation:
- Shortening my stay at a social gathering.
- Interrupting my participation by giving myself a ‘time out’.
- Missing key bit of conversation as neural fatigue sets in.
- Cancelling my attendance at planned events
Modifying Expectations
I am regularly reminded that I can not live with the same expectations that I had pre-ABI. The challenges I experience in various social settings will likely not change much. I should not let the sense of social isolation define my life. I’ve been advised to look internally for affirmation. Reflecting on what I am able to do and down playing the setbacks.
One of my goals is to find and accept a level of social engagement that is satisfying. I expect it will take time and trying different experiences to begin to understand what that might look like.
Meanwhile I continue to keep in mind the idea of ‘cost – benefit’. It’s okay to put myself into a situation that requires some recovery time. Rather than focus on the event I end up cancelling while recovering, I focus on the memories of the recent event. By consider the ‘cost – benefit’ of an event before and during I try to avoid a recovery time that leaves me discouraged and short of good memories.
Living in God's Pocket with ABI 