"Don't Be Afraid"

Social support for a person with brain injury can lift them out of fear.

Posted Apr 22, 2019

Shireen Jeejeebhoy
Source: Shireen Jeejeebhoy

"I sent my family off to Manitoba. I can't get on a plane. I'll just gonna sit still. It'll be fine. But another thing about concussion or about any mental challenge, is when people leave sometimes, things get worse because you actually need some of the motion and companionship around you to lift your spirits enough to feel good. I ended up in emergency again cause I was so bad I couldn't do anything for more than a few minutes. I'm sitting there, and I'm just so scared.  I can't do anything. I cannot even make myself supper. Like, what am I gonna do? I was sort of trembling. And I got a little text from my wife, 'don't be afraid.' I started crying, and I realized, I'm OK. Yeah, I am OK." (Mike Janzen, jazz musician and composer, see reference)

"Social isolation vanishes a mind," I wrote in Concussion Is Brain Injury: Treating the Neurons and Me.

Mike Janzen fainted and hit his head on the floor, suffering a concussion. But he had the great, good fortune to have a supportive wife and a faith community that rallied around him and his family with practical, emotional, and spiritual support. And because of that, he could articulate so clearly the effects of that social support vanishing even though it was temporary and he knew it was. Effects included:

  • Unable to think
  • Unable to self-soothe
  • Unable to do practical, necessary things to sustain oneself
  • Inability to predict one's capacity
  • Severe lack of stamina
  • Severe lack of motivation
  • Extreme fear
  • Loss of self-confidence
  • Feeling the opposite of OK
  • Unable to see being OK again
  • Trembling
  • Mired in aloneness

Yet too many of us with brain injury, including concussion, are expected to function normally without social support. The lack of social support may come in the form of literally no one around or no one reaching into our lives to anticipate our needs and support us in practical ways. Or it may come in the form of people who live with us but who, instead of soothing our fears and propping up our cognition and supporting us practically, refuse to learn about concussion and blame our problems on laziness, not "getting over it," thinking ourselves into injury, and so on.

The resilience of the human spirit is astonishing when you consider that list above of the effects of even temporary social isolation and then consider how many of us manage to struggle through the day without starving, though we gain weight because chocolate is easier to eat than heating up frozen food. How many of us manage to produce something, like writing a blog post—though the price is fatigue that makes you dizzy, drags your facial muscles down, and makes it hard to breathe. How many of us show up at our medical appointments -- though it means we must rest and can't do anything else that day or sometimes the preceding and succeeding days. How many of us try and try to socialize—though our brain injury or associated post-traumatic stress disorder (PTSD) often makes our plans fall through and though those who love us demand we socialize in normal ways that worsen our symptoms. And all this with an injured brain that processes thoughts, communications from others, sensory information, environmental cues, emotions, etc. extremely slowly and usually takes hours or days to produce any response. Janzen's wife was wise to send him the shortest of texts because his brain could not have processed nor produced the alleviation of fear and stimulation of functionality she was trying to elicit if the text had been longer. This is why I find Twitter easier than Facebook; short texts easier than emails. Her words also had a profound positive effect because they arose from love not from judgment or criticism or finding fault. If from out of the latter three states, they'd have driven him further into non-functionality and fear.

I sometimes think that though it's physically and mentally more challenging to live alone than living with a critic, it's spiritually better because you're free of the destructive effects of continual, relentless blame, criticism, judgment, humiliation, and shame from someone who refuses to understand and have compassion for their loved one with brain injury.

"This one [jazz composition Were You There] sort of simple and haunting. Sort of the idea of friendship. Someone's there with you through it. . . . The other version that's on there is actually quite dark. . . . which is sort of bring out this dualness to life. . . . There's also great joy; there's also great challenges."

Our social networks that like a web in a strong wind become tattered, torn, blown away after we suffer a brain injury, don't get to experience the uplift of supporting us through tough times. Janzen was able to regain his piano playing and compositional skills within a web that kept itself strong so as to sustain him. They exulted with him his herculean accomplishment of recording an album and received the joy of knowing that their support made it possible. Those who don't support us see only the challenges, the difficulties, the distortions brain injury creates and translate them into personality defects that don't deserve compassion and help, worsening us in the process.

"We've had just a fantastic support group. I go to a little church in Toronto. There was lineups down the street the first few weeks with people dropping food off. There was friends coming forward to raise money for us cause I'm a self-employed musician.  People were fixing our house up for us. Someone built me a studio in the back while this was going on. One friend even on Mother's Day, he texted me to say, 'Can I pick up flowers for your wife?' That just wrecked me cause it was just so amazing. And my family, I cannot say thank you enough to them.  Getting me through it. Giving me hope, and just keep me on going." 

How well Janzen articulates the kind of support that breathes life into those who support and are supported. Imagine how much better off we, society, and our economy would all be if we supported in that way the hurting people around us?

Copyright ©2019 Shireen Anne Jeejeebhoy. May not be reprinted or reposted without permission.

References

CBC Radio show Fresh Air, 21 April 2019, interview with Mike Janzen, jazz musician and composer on his new album Lent