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Based on this extremely broad and outdated (cue eye roll) definition, individuals with brain injuries have a disability, whether or not they want that label and whether or not their injury is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

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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.

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.

Where’s the social support? (Findings, part V – seriously?)

I swear, I swear I’m almost done with this topic, but there are so many people’s stories to share! Have you shared your story in the comments yet?

Of course you haven’t! Do it now. ; )

Similar to Rachel’s experience, Melanie expresses her hard time relating to SBIF.  Melanie explains feeling like she wants to talk about her brain injury, except that SBIF is not the place to do it.

Melanie shares:

“The support group really isn’t for me.  I think it’s great what the Foundation is doing, but I’m so different from everyone else there. They have strokes and ABI, and even the people who‟ve had a TBI like me – well I’m just better off than they are. I can’t relate.”

Side note: Isn’t it interesting that so many people I met feel “better off” than other brain injury survivors they’ve met, and yet they still seek help, support, and comfort? Kind of crazy, just sayin’. End side note.

Though Melanie wants a place to talk about her experiences, SBIF’s participants and topics don’t apply to her specific situation.

And Douglas agrees with her.  Douglas attended two meetings before he decided not to go anymore.  “I’m doin’ better than the folks are there,” he tells me.

Douglas shares his narrative:

“I wanted to go and show my support for the other survivors, but that doesn’t really help me with what I need… And they’ve [at the support groups] had strokes, just like me.  You’d think we could relate, but we can’t. The people there have these woe-is-me attitudes. Sure, I’ve had my share of dark times too, but I’m more focused on how to live my life now, brain injury and all.”

I nod along as Douglas speaks and eventually concede that the population of SBIF is a bit older than we are. Douglas tells me how he’d love to have more people in his life who understand his situation.

He feels a strong need to share his story and connect with others. All of his friends, he says, “don’t understand it [brain injury] like they should.”

He tells me that his friends and family “just tell [him] to stop talking about it already.”

Douglas smirks.

“Oh, I talk about my injury all the time.  People tell me I talk about it too much, and I say, ‘Why don’t you have a brain injury and live to talk about it?’ I‟m never going to shut up.”

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

“He and I just weren’t compatible anymore… and that‟s the whole story,” Rachel tells me, timidly. Sadly.

“I guess he found it hard to love someone who was physically weak and not the same anymore. I mean, my memory is different.  My energy levels are different.  And I wanted to talk about all of that, but he didn’t.”

Rachel’s story saddens me.  It makes me wish she weren’t alone in her journey.  Her grieving phase has extended “perhaps longer than it should,” as she puts it. B

But everyone’s journey is different.

She expresses her wish for more social support. Lacking immediate (remember what I mean by “immediate”?) social support has been a challenge for her, and she mentions “feeling despaired” and “not hopeful like [she] used to be.”

When I ask about her involvement with SBIF, a seemingly suitable option for her situation, she laughs at the suggestion.

“Why would I want to go to those meetings?” She asks rhetorically before continuing. “Oh, I think I went to one, but those meetings aren’t for me. Those are for people who are really bad-off.”

I’m intrigued by Rachel’s answer and yet not surprised she feels that way. After all, every other participant has felt the same way.

Interestingly, although the participants of my study no longer involve themselves with SBIF, they all made the choice to respond to my request for a meeting and the chance talk about their brain injury.

I think all of us, brain injury or not, really just want to share our story.

That’s what it all comes down to, right? That’s why we’re writing blogs, reading blogs, sharing what we find with others.

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

I hide my surprise at Sarah’s candor, but I understand why she chooses not to attend SBIF’s meetings any longer.

The support the meetings provide seems adequate for those to which it applies – elderly individuals with strokes (maybe, but even then…) – but not for any others.  The topics covered at SBIF’s meetings are largely focused on pain and suffering, with few glimpses into a brighter future.

Unfortunately, individuals who are both elderly and have strokes only make up a small part of the population of brain injury survivors.  While SBIF’s meetings serve this part of the population’s needs, they largely ignore others’ needs for social support.

In another interview with Rachel, I scribble down some notes and then turn back up to face Rachel.  I look up to see the pain in her eyes, the wrinkles that crease and show her sadness.  Rachel explains:

“The friends who used to be in my life . . . they aren’t anymore.  My family, no.  It’s just me on my ranch now.  Me and my horses.  My husband and I divorced because – well we just had to after [the brain injury].  I was a different person from it afterwards.  Head injuries can change you, you know?  So I’m on my own to deal with this [brain] injury now.”

Rachel was alone to cope with her brain injury and its damaging effects on her sense of self.

She describes her friends as “not understanding” and “not equipped” to provide the support she needed after getting out of the hospital.  Even her husband, who was the closest person in her life, could no longer relate to the person she had become.

I feel so sad for her, so sad for the millions who have faced similar hardships because of brain injury.