I’m not broken (Findings, part VI)

“I’ve done a lot of work to recover from my brain injury. But that’s not what other people see when they call me disabled.  It feels like it’s my fault, like I still have more work to do. . . .  When the truth is I’ve come a far way from my brain injury and certainly a far way from disability,” Carly tells me.

Her account reiterates the distinction brain injury survivors make between injury and disability, and the need for some to relate to injury. Because society often equates disability with “brokenness,” including some brain injury survivors themselves,  some individuals choose injury over disability to communicate that they are not their brain injuries; they’re not something broken that needs fixing.

Further, Melanie’s account testifies to what the underlying difference may be between injury and disability, according to brain injury survivors.  Based on her experiences, Melanie still sees the potential to recover from her injury, even if the potential is faint.

Melanie says:

I want to get back to my pre-accident ability.  I want to work and hold a full-time job that’s mentally stimulating and go back to school. I want to play sports again and work out… I feel like I’m always resting and putting minimal stress on my brain.

“It helps me to know that I can fully recover from this thing [brain injury] if I think of it as not permanent.”

While Melanie acknowledges her current limitations from the brain injury, she also sees them as temporary, as an injury to overcome.  Because part of her injury is cognitive and the brain is able to adapt, she has hope that her brain can recover still and she’ll regain cognitive abilities. By identifying with injury over disability, she associates herself as on the path to recovery, which is transitory, liminal, and not enduring.

I get what Melanie means with the need for hope, but in contrast, does disability have to mean hopelessness?

Just sayin’, maybe we as a society should reshape our understanding of both brain injury and disability so that people – across the entire spectrum of ability – don’t feel perceived as “broken.”

The literature behind identification with disability is intricate, interweaving, and yet contrasting.  The definition of disability created by the World Health Organization (WHO, 1980) includes any restriction or function loss in a person as a result of impairment, inhibiting the performance of an action.

Based on this extremely broad and outdated (cue eye roll) definition, individuals with brain injuries have a disability, whether or not they want that label and whether or not their injury is permanent.

It’s interesting then that the participants of my study largely dissociate from the disability label. Lack of identification with the label could be a coping mechanism, such as a problem-focused strategy; individuals take actions (in this case, strategic language choice) to eliminate the stress they perceive is associated with the stigma of disability in society.

Research by Olney et al., (2004) supports this claim, finding that individuals who identified with having a disability may lead to lower satisfaction and increased mental problems associated with disability.

What do you think? What have your experiences been, one way or another?


I’m not broken (Findings, part V)

“For stigmatized people, the idea of normality takes on an exaggerated importance,” Davis (2013) explains (p. 148).

For this group of individuals with brain injuries, reconstructing identity around injury over disability serves as a problem-focused coping strategy that helps them eliminate the stress and uncertainty involved with brain injury and regain a semblance of normalcy in their lives.

Choosing between injury and disability points to survivors’ process of identity reconstruction.  Adhering to “injury” over “disabled” seems to help many people understand their limitations as “not [their] fault” and as “still in recovery.”

Carly completely agrees with the need for distinguishing between injury and disability, and for the first time during our interview, I see her become suddenly enthusiastic about an issue.

The excitement in her eyes juxtaposes the demure personality she has displayed throughout the first half of our meeting, and soon I learn the reason for her sparked interest, even anger.

The “disability” label is something she “fight[s] against all the time,” she tells me, eager to tell me more about the stereotype.

Carly describes:

“I had a brain injury; okay, technically I still have one, right.  Whatever … I’m still the same me…  I don’t want other people to see me as disabled, you know? I’m just slightly less capable than everyone else. Does that mean I have a disability?  Well, it shouldn’t.  There’s a difference between being disabled and being brain injured.”

Is there? What’s the difference?

When the participants of my study see their injuries as still in recovery, they see room for improvement and someday moving past their injury, whether or not that’s actually possible; they see opportunity for positive coping, even though it might involve ableist thinking.

Weiten and Lloyd (2008) describe problem-focused behaviors as actions pointed towards diminishing or eradicating stressors, which is what participants are doing when they eschew disability labels – they eliminate stress from the stigma that they perceive as associated with disability, and therefore feel they cope better with the stress of living with brain injury.

I’m not broken (Findings, part I)

“I‟m not buying in to the potential of full recovery.  This is who I am now,” Peggy tells me, firmly.

“Doctors like to tell me this and that, and I just roll my eyes because I don’t believe them.”

Peggy’s recovery has been littered with different diagnoses, but she no longer clings to them for understanding her brain injury physically or emotionally.

Although doctors label her permanent physical weakness a disability, she doesn’t label herself that way.

In 14 of the 16 meetings I had, brain injury survivors mentioned categorizing themselves as something other than “disabled,” even though the cognitive and/or physical effects of their brain injuries technically place them into a “disability” category.

Instead they use variations of the term “injury” to describe their cognitive and physical deficits.

I’m all for people choosing their own construction of identity and choosing our own labels, but what do brain injury survivors achieve by shunning the term “disability”?

Is it possible we’re creating another form of discrimination – brain injury survivors vs. “disability”? Don’t you think, if anything, we should be each other’s support, each other’s people?

Just food for thought, I suppose. How do you label your brain injury and residual side-effects?

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.

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

“I lost everyone because of my brain injury,” Rachel tells me.

She repeats it: “Everyone.”

Rachel suffered a minor ABI that went undiagnosed for six months, and consequently, she now lives with impaired memory, fatigue, weakness, and a detached sense of self.

She also “lost all [her] friends and family in the process of dealing with the brain injury.”

Many of us have experienced difficulty in receiving the the right type of social support from others following our injuries. You know how it is – it’s hard to find people who actually get it.

It’s hard to describe it any  other way than that.

We all just want to receive social support that promotes healthy physical and emotional recovery from brain injury.  While family and friends are good resources for social support, their care can fall short sometimes.

Or they can disappear altogether, like they did for Rachel.

The brain injury survivors I met at SBIF (the local brain injury support group) described a difficulty in receiving immediate support from SBIF’s meetings.  Floyd (2014) characterizes immediacy as the actions that decrease psychological differences and distance between individuals, emphasizing similarity and increasing their ability to relate.

SBIF’s meetings just don’t offer that. To anybody I met there.

What’s been your best experience with social support? Your worst experience?

The old me died (Findings, part IV)

Mourning the loss of the former self arises as an important part of identity reconstruction for individuals with brain injury.  For many, including myself, grieving our “old” identities helps us recognize the end of an era – of life without brain injury – and move towards acceptance of life with brain injury as a liminal space. (More on what the heck I mean about “liminal.”)

Still, it’s important for us to recognize the mourning phase of reconstructing our identity as just that – a phase.

Grieving the loss of our former self for too long can be harmful to individuals’ sense of self and may even lead to depression (Bonanno, 2004; Konigsberg, 2011).  Still, many obstacles can hurt brain injury survivors as they reconstruct identity, namely a lack of immediacy in social support.

It’s not black or white: I’m stuck in the gray (Findings, part IV)

In the years immediately following my brain injury, I struggled to reconcile my identity as a young, popular, and able ice skater with my new role as a helpless, rejected, and lost 11-year-old. It was in this liminal space that I wandered for a long time, and Richard now finds himself there too.

The space isn’t clear or straightforward; it’s neither black nor white; it’s not made up of the people we used to be, nor is it made up of society’s perceptions of what brain injury survivors should look like. Rather, the space is an identity all its own. It is gray, changing, and undefined.

As my interview with Richard continues, our conversation strays from the questions I had prepared in advance to ask him. We speak less formally and more like old friends swapping battle stories of coming to terms with what we’ve experienced. He shares intimate details with his struggle to “find himself once more” at his advancing age, and I’m amazed at his strength to rehabilitate not only his body, but also his identity at this point in life. The journey to reconciliation seems to be ongoing.

Richard describes rectifying the “old” and “new” versions of himself as “an uphill battle [he‟s] still climbing.”
I relate to this unsettled feeling of being stuck between two worlds, but I cannot help but wonder if the ordeal is even more challenging at his age, when he is no longer his young self, yet still unsure of what identity he is to assume in the future. I reflect again on the past-present dissection in his language: his “old” and “new” selves, the “battle” he hopes to win.

Why do we always use “war” language anyway? Are we battling ourselves or someone else?