Addressing Social Isolation

Zimbabwean Stone Sculpture at Zim Art

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.

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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.

12 thoughts on “Addressing Social Isolation”

  1. So much of what you have written here is my own experience too.
    It is a long journey.
    I suffered with loneliness as I do not get visitors and my husband is out a lot. I cannot attend church and have to decline most social functions. I hope it will change. Through prayer I’m finding the loneliness being replaced by solitude. This is a recent development and such a gift.
    Thank you for sharing your experiences and for doing so so eloquently. Although I do not wish this on anyone else, it is so good to know I’m not alone as sometimes I wonder if I’m just imagining it and that it’s all just in my head. (No pun intended there.)

    Liked by 1 person

    1. As one deals with a disability or a chronic condition, one’s sense of what impact it has does change over time. We are social beings and that forms a major part of our identity and how we see ourselves.
      I struggle with what ‘acceptance’ looks like. Your comment about experiencing solitude opens a window for me as to what can replace the sense of isolation. Thanks for sharing.

      Liked by 1 person

  2. So much of what you have written is so real for us as well. After 18 years of dealing with ABI, one thinks that one has worked out a way of coping with social situations that unbalance the usual routines of our lives. But every once in awhile reality comes back and makes one realize how much we have given up as we work out a manageable lifestyle for coping with ABI. A long anticipated attendance at a wedding of friends ended up presenting us with challenges as we tried to find a solution as the situation presented itself. One can become discouraged, but then I realize how much we still have to be thankful for and once again we focus on the many everyday blessings that are a part of our everyday lives.

    Liked by 2 people

    1. Thanks for your comments. I find I learn valuable insight from what I call ABI veterans. I can say that I expect to be confronted with unexpected set backs, but when they happen it does disappoint me. At the same time I hold to my statement of, “I’m glad the injury I sustained 3.5 years ago wasn’t worse.”

      Liked by 1 person

  3. Jasper, I love your statement, “Living in God’s Pocket with ABI.” My son is a 30-year survivor of TBI with severe disability in that he has no short-term memory and is functionally deaf as a result of the injury. However, he is able to live alone with
    help and he is able to drive, exercise, and volunteer at his church’s food pantry. We have a very supportive brain injury group, and every individual is different. I will pray for you.

    Like

    1. I chose the title of my blog on the inspiration of Del Barber (see my first blog post). The idea when everything is just right, you are with good people, the weather is enjoyable, and there is a sense of satisfaction about the day – that is like living in God’s pocket, the belief that God is in charge and looking after me.
      After my brain injury I renamed my blog by adding “with ABI”. I firmly believe God has a purpose for me and that he is looking after me.
      A friend of mine who lived with a very debilitating condition namme her blog “The rePurposed Life”.
      For your son, the work that gives him satisfaction is just one part of him having a repurposed life.

      Like

  4. You should write for publications that cover this condition. Your insights and examples on how you cope and still be production would be a source of inspiration and hope for many many people whether victim or caretaker.

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    1. Carl, your suggestion has taken an unexpected turn. A brain injury association with a quarter million hits a month on their website asked permission to translate my blog posts because they see them as helpful and inspiring.
      There is a passage that goes something like this: “Cast thy bread upon the waters: for thou shalt find it after many days.” From the book of Ecclesiastes.
      Thanks again for your encouragement.

      Like

  5. I just replied to your comment on my post, but I wanted to reply here too. A lot of what you’re saying resonates with me, I remember the same feelings and reactions at about the same time frame. The frustration that seeing friends came at too high a cost – the pain, the sense of being overwhelmed. I’d often go to visit someone on the train and then be too exhausted to understand how to get back and end up getting lost!

    And I felt I was disconnected from the rest of the world, seeing only glimpses, never interacting, never affecting. It did get better, partly because time is the biggest healer of BI, and partly as I learned to look after myself and read the signs my body gave me. Let me know if I can help, I remember I had so many questions, and nobody seemed to understand what I was talking about.

    Look after yourself, what you’re going through is intensely tough, but you’re getting there. Sending hope and happiness your way.
    🙂

    Like

    1. I’m hearing back from people in response to my postings. One thing that very much encourages me is when I’m able to give words to others to explain to their family and friends what they are going through. I’ve also heard from caregivers who find my postings helpful in better understanding the person they are looking after. Just today, someone told me that they have a hard time explaining to friends what they are experiencing or struggling with, but that my postings help him understand himself better.
      So glad to help and in turn be helped.
      Thanks for sharing.

      Liked by 1 person

      1. Yes, you’re absolutely right. Brain injury isn’t talked about much, people don’t understand it and find it difficult to talk about. So anyone explaining their experience is doing important work. And your blogs are excellent, honest and clear, so I’m sure they are helping people.

        Liked by 1 person

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