Graphic showing relationships between men and women with the lines erased around one man and one woman.

Brain injury evaporates a person’s social life.

Social Relationships Die

The destruction of social life after brain injury isn’t necessarily about damage to the networks and brain areas involved in social skills and bonding. It’s about all the changes in affect, communication, processing speed, fatigue, sensory overload, and so on that impair a person’s ability to socialize.

On the other side of the social relationship is the lack of compassion and accommodation by the injured person’s social group (family, friends, neighbours, co-workers, etc.), which exacerbate the impairments.

Injury impairs the ability to do the back-and-forth of social life, the spontaneity of conversation and getting together, the noise, the need to prepare, organize, plan for, the number of hours, the energy required.

Destruction unfolds slowly. It isn’t a one-off event where one day a person is the life of the party, the next, not. Instead, it begins with the social group rallying around after the diagnosis of brain injury. Over time, more and more of the group find the cognitive and affect changes difficult to understand and manage. They don’t read up about them nor meet with the rehab team of specialists to understand the causes. Or if they do, they default to the social norm that if someone sits there like a lump or is chronically late or begs off at the last minute, then it’s a personality defect. Judgement creeps in. Then reasons for not meeting up with the person crop up. Then friendships die, and family disappears. Pandemic-type isolation becomes the norm. The resulting social atrophy continues the downward slide.

Misdiagnosis of the Causes

The problem with understanding and repairing socialization issues isn’t with the broken brain; it’s with attitude. Brain injury isn’t a behavioural issue; it’s a neurophysiological issue requiring neurostimulation to heal injured neurons and networks and practical, physical, cognitive, emotional, income, and social supports during the recovery process. Only treatment to regenerate broken neurons can rekindle social skills. And only those willing to learn how to socialize with people with a brain injury can ensure the injured person’s social life isn’t completely lost during treatment and/or rehabilitation. Unfortunately, outside of what not to say to a person with brain injury, most writings or rehabilitation focus on the injured person to change their behaviour.

Problems in Social Rehabilitation

One of the groups I joined at CHIRS was called, “Be Social.” The group was small. Two health care workers lead it, one was a therapist. The group gave me a chance to socialize with other people with a brain injury, but as a teaching tool, it failed. It failed because those of us there either knew perfectly well how to socialize or had not had the capacity since birth. For those of us injured as adults — after learning social skills — the problem was our broken brains wouldn’t let us use those skills. Those who’d had a brain injury very early in life and had never had the capacity to socialize needed extensive years-long in-person-teaching during real-life scenarios. Or perhaps qEEG, evoke potentials, and DTI diagnostic testing would reveal networks that needed activation through neurostimulation like brain biofeedback and tDCS. Perhaps that would give them the capacity to learn abstract social skills such as reading faces and the nuances of body language. I don’t know if anyone has researched that, but given how little thought is given to the neurophysiological basis of injured social skills and how paternalistic the health care system and brain injury associations are, I doubt it.

Day Programs Perpetuate Suffering

I told the overworked person in charge of social life at CHIRS that the programs he devised were great, except that they existed because society wanted nothing to do with people with brain injury. Day programs serve to keep untreated suffering people occupied. They prevent them from rejoining society. He hadn’t thought of it that way before and wanted me to speak on it. From the lack of invitation, I gathered the rest did not.

So long as people with healthy brains don’t have to learn how to socialize with people with injured brains, day programs will exist.

CHIRS exists to support people in their recovery; it isn’t an advocacy organization per se, as I understand it. But other organizations are. Yet they, too, put the onus on the injured person for problems with their social lives. There are many kinds of brain issues that make socializing difficult. But the common denominator of them all is that people with healthy brains won’t accommodate differences. And entities from schools to health care organizations don’t seem to be teaching them how. I suspect that many Canadians, and I’m sure others in the rest of the world, would want to do better. But who is making them aware that this is an issue that anyone with an accommodating, generous, and kind attitude can learn to resolve?

Supporting Social Life

Headway UK seems to be a rare organization that does. It wrote a fact sheet guide for friends of people with brain injury.

“. . . learning about brain injury is the first step towards helping someone affected by this ‘hidden’ disability.”

Factsheet. Brain Injury: A Guide for Friends. Headway UK.

Absolutely. But there are two problems with this first step of learning to socialize with people with brain injury. The people in the injured person’s life need to want to learn. How does one convince them when they’re busy denying, avoiding, and blaming? The second problem is that awareness campaigns focus on sports concussions and how to avoid brain injury. I rarely hear about the daily hell of brain injury, exactly how it destroys social relationships, and specifically how ordinary people can halt that destruction.

Headway UK, like many organizations do on their websites, describes in brief the visible kind of brain injury and then lists the long-term effects of any kind of brain injury, dividing the list into physical, cognitive, and emotional and behavioural impacts. This is useful. But how does that help a person with a healthy brain socialize with a person with a broken one? They compassionately write:

“. . . you may deeply miss the person they were. However, rather than walking away from them, try to realise that you are grieving together and that it is possible to move forward supporting one another and creating new memories.”

Reward Comes from Participating in Recovery

Journeying with a person with brain injury as they recover, being their advocate in seeking objective testing, finding effective treatments and accompanying them there is rewarding. Human beings are social animals; we feel better when we help each other. It’s a good way to reverse a bad day or bust stress. And it doesn’t have to be very much for social cohesion to be good for our hearts, metaphorically and physically. That’s why social learning should focus on the person with a healthy brain, to teach them that walking alongside their injured loved one is uplifting.

Jeffrey S. Kreutzer, Ph.D., spoke on the related idea of recovering relationships at the Pacific Coast Brain Injury Conference 2010. Part One of his talk is up on YouTube. He astutely quotes an injured person:

“I lost my friends because they didn’t know how to deal with my injury. Neither did I.”

Recovering Relationships After Brain Injury: A guide for survivors and family members – Part 1. YouTube

I hope this website will teach both the injured and their social group how to deal with and heal their brain injury.

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