My people: The brain injury society (my story this time)

Sitting in the doctor’s office with my parents and staring at a CT scan of my brain, the doctor doesn’t have good news for me.

My parents listen intently to his words, as I attempt to distract myself from the disappointing news I fear, I know, will come. My parents hold my hand and comfort me through what they know is difficult news. I redirect my eyes to the furnishings of the office, to the medical equipment, and back to the doctor. His rotund belly protrudes over his beltline as he points to the computer screen and points out the residual brain injury – evidence that the radiation surgery I had six years ago didn’t obliterate the entire clot, and I’m still at risk of another bleed.

It’s all the evidence I need.

I let the news hover above me before taking it in, bracing myself one last time. I think I’m ready to hear it though, and I begin listening again to what the doctor is saying.

I think to myself this diagnosis isn’t so bad; it’s what I knew to expect, right? Yet my moment of strength passes, and I find myself growing weak.

My hopes for a life without an AVM disappear, and my ability to stay strong for my parents is quickly crumbling. I desperately cling to my will not to cry, not wanting to disappoint my parents with tears.

My parents did prepare me for this news, and I promised myself that I’d be strong.  But as the doctor begins informing us about the options I now face, I grow weaker and weaker inside. I try one last time to hold back the tears and not disappoint my parents, but I can’t help it any longer.

I squeeze my parents’ hands more tightly, silently apologizing to them for what’s about to happen. Slowly, I break. The tears barely escape at first, then come uncontrollably.

I’m so upset by this diagnosis, so hurt by this doctor, so mad at myself for disappointing my parents by crying, and the culmination of all the pain only fuels my tears.

I plead with myself internally to stop crying, gripping tightly again to my parents’ hands. I notice this time that they squeeze my hand back.

Looking up for the first time since the tears started, I see my parents crying too, their sobs bigger than mine.

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My people: The brain injury society (Findings, part II)

“So my boyfriend’s pretty much the only one who gets it.  Unless you’ve had a brain injury, people don’t get it.  They can’t help it, but they just don’t.”

I nod as I listen to Sarah‟s story, knowing exactly what she means. Besides my family, who has seen me through my entire brain injury, I have few people who truly understand my trials in surviving and recovering from brain injury.

Though it’s difficult for my fellow brain injury survivors and me to receive the proper social support from individuals without brain injuries or support groups that don’t fit our needs, we still recognize that there’s something different about connecting with others who have had similar medical experiences.

Finding people who can comprehend and relate to the magnitude of our experiences is rare, and we value our relationships with those folks when we do find them.  For as many destructive accounts of social support I found in meeting with survivors, there was an equal number – 16 of 16 – with descriptions of encouraging experiences. These experiences seemed to occur from social support offered by other brain injury survivors or by individuals very close to us.

See? I said it would get better.

My people: The brain injury society (Findings, part II)

“You’ve just got to have those people in your life,” Douglas explains, again in his simple-as-that manner.

He tells me:

I know the hell people go through.  I’ve been there; I’ve even been suicidal.

“But at some point, you look at yourself and say, ‘Do I want to just give up, or do I want to survive?’ And that’s what having others who’ve been through the same thing is for… to understand all that good and all that bad… ‘Cause there’s a whole lotta bad.”

All the survivors I meet express a desire for a support group, but they say SBIF isn’t a group to which they can relate.

I think of Melanie’s story, noting again that survivors indicate age as an important factor in relating to others – as well as something largely missing from SBIF.

What helps you relate to others? Or what makes you want to share?

Groups tend to attract more members when the group has greater similarity and thus, a higher cohesiveness, meaning members are more likely to participate in group activities, benefit from the support, and stick around to support newcomers if they feel cohesive with one another (Stangor, 2013).

When group members share similar traits such as age, they find it easier to relate to one another and are more inclined to continue membership with the group.  Research also indicates that similar backgrounds (e.g., brain injuries) increase interpersonal attraction to a group and group cohesiveness (Stangor, 2013; Stillman, Gilovich, & Fujita, 2014), but this is not the case for my SBIF’s survivors and me.

My people: The brain injury society (Findings, part II)

When Melanie didn’t benefit from the support groups from SBIF, she sought other groups and went to great lengths in search of the proper support she needs.  When she couldn’t find people with brain injuries, experiences, or age similar to her own, she went online to find support groups that better suited her.

(No big surprise. That’s what we’re doing here.) But, she tells me:

I‟ve done art therapy for brain injury survivors.  I read their stories online, watch documentaries, and email with people who have suffered TBI.  I’ve never even met them, but they understand.

“As much as my friends and family try to understand and be supportive, on some level they still don’t get it because they haven’t been through it and they can’t relate. Hearing others speak about their injuries helps me understand mine better. I think it also gives me hope that I will continue to improve.”

When SBIF’s support groups didn’t suffice, Melanie continued her pursuit for social support. She’s thankful that the Internet has put her in touch with others who have similar experiences to her own and are also in the same phase of life.

“It helps to know that there are other women like me, who are my age, you know,” Melanie continues, “dealing with TBI while simultaneously managing everything else we experience at this age.”

My people: The brain injury society (Findings, part I)

“I call it the Brain Injury Society,” Douglas tells me, smiling as he explains his relationship with people who’ve also had brain injuries.

“I call it The Brotherhood,” I smile back.

Side note: Do you have a name for the people who get you?

              “They just get it better.  Simple as that,” he says.

Douglas’s “simple” explanation essentially does sum up survivors’ experiences as concisely as possible. The brain injury survivors I met shared stories of reaching out to others with brain injuries to be “reassured” and to “know that these things are normal.”

“My boyfriend has been with me through it all – the car accident, the hospital, everything,” Sarah tells me.

She sighs as she takes in the weight of that statement, knowing her own Brain Injury Society of support is very small.

Where’s the social support? (Findings, part VIII – phew, we’re done)

Physical recovery is only part of the what we deal with from brain injury.

Brain injury survivors such as Rachel, Peggy, Douglas, Melanie, and Sarah (and myself!) also deal with unexpected social consequences, which in large part involve a lack of immediacy.

SBIF – let’s be honest – kind of sucks. It does what it can – let’s also not be too harsh – but that’s not enough for everyone. That’s the beginning.

Survivors have different injuries and different needs; one all-encompassing group doesn’t really aid all of these individual needs.

Hmm, no big deal, right? Well…

Lacking immediate social support from non-brain injury survivors and brain injury survivors alike can further hinder survivors’ emotional well-being and identity reconstruction as we make sense of our experiences and attempt to create a (somewhat) new identity.

Or at least an identity that’s different from before, because duh, we had a brain injury. We’re settling in to a “new normal,” if you will (Harter, 2013).

Current research suggests that a lack of immediate social support after traumatic events can harm individuals’ sense of self and recovery, slowing or preventing emotional recovery from happening altogether (Ergh et al., 2002; Gillespie et al., 2010).

And yet, in the midst of these experiences that lack immediacy, brain injury survivors also report numerous instances of empowering social support, which surface in others’ ability to relate to their experiences.

See? I told you there’s hope. We’ll get there soon.

Where’s the social support? (Findings, part VII)

Sarah relates to Peggy’s situation.  She appreciates the support that others offer her, but “it‟s not the kind I need,” she tells me.

Sarah describes, “People say to me, ‘Oh, you‟re so lucky to be alive. You must be so grateful.’ I am grateful – don’t get me wrong – but I‟m still not the person I used to be.

“People don’t really give me the right support because they don’t know what I’ve been through.  They hear how I survived the car accident and tell me how lucky I am. Well what about the rest of it?  What about the living with the repercussions, the day-to-day shit fest, how I’m not who I was before?”

Sarah‟s account demonstrates brain injury survivors’ need for a social support that’s unique to the individual. There are so many different types of brain injuries, with varying levels of recovery both physically and emotionally for each one.

Survivors need social support suited to their individual situations. We need social support suited to our individual situations.