Gabby Giffords.
My hat is off to her, I respect her, admire her, even wrote her – BUT….I have said it before and I will say it again – the press around this story bothers me endlessly. News articles tend to spin Gifford’s experience as a heroic political event rather than use this, aggressively, to identify and gain support for the real issues around brain injury. From the perspective of educating the public and working towards making changes the press does a terrible job; for months after Gifford’s shooting they printed reports suggesting her impending return to her office; a notion that (to anyone who knows) is 99% ridiculous (I won't mention the other 1%).
It is not that I would have wanted Gifford to resign but most brain injuries, and certainly ones such as hers, do not disappear or heal after one year. To suggest that they do or could goes back to the great falsehood that if because you ‘look good’ you ‘are good’. If there is any expression that folks with TBI HATE it is ‘you look great’ (thanks to John Byler for educating us on that one). Appearance barely scratches the surface of the issues. To encourage the populace to believe otherwise does a huge disservice to the community at large – it encourages people to think ‘Oh, well all you had was a concussion, why aren’t YOU returning to work. You must not be trying.’ Read John’s book if you keep asking that question.
Now we are hearing the next great misconception – the endless commentary about her ‘miracle recovery’. There is no miracle here, sorry. Like the idea that she could return to work in 6 months a miracle recovery makes this out to be either a question of character or some sort of spiritual beneficence; it is neither. The accomplishments (the miracle) of Gifford’s or anyone ability to rebuild is really about three things: 1) an individual’s effort, 2) having a supportive environment and 3) the appropriate and effective tools and techniques. I will also acknowledge that there is a basic physiological component as well – the extent and location of injury - but we don’t really know the brains capacity in this and furthermore that part is beyond our control.
Let me be clear that even when I speak of effort I am not necessarily speaking of character, of inner fortitude. Brain injury can make the most will powered and determined brain go wonky. Furthermore the true grit that is needed is often influenced by the support, environments and care that one receives. Obviously the Vet who returns home and cannot find work or needs to support a young family after risking their life for their country, or the civilian who finds in late mid life that they can no longer perform the only job for which they have a skill and who consequently faces losing their home, or the elderly person who is ignored because old people are just forgetful or the young athlete who is assumed to be a poor student and a behavioral problem – clearly even grit in these circumstances may not matter much. These folks are battling a systemic process that assumes they have to only try and they will succeed. Simple awareness of what brain injury is and is not is the first step in helping people gain and sustain the determination that is needed for them to rebuild. And for every person this path looks different and takes a different turn.
As to the other two parts of recovery – this is what I would like to see Gifford’s office really focus on. The knowledge and participation of community and environment in order to rebuild a life is essential. This means educated family members, teachers, employers, police, etc. It means providing meaningful services and assistance for folks who are struggling instead of denying medical care, foreclosing on a home, or walking away from folks because they don’t act like you would like. It means coverage for alternatives like HBOT and neurofeedback. It means giving ADA real teeth in employment and educating businesses about invisible disabilities and how they can help. It means making the public aware that people with TBI’s are still capable, talented individuals who want to be productive and useful. And it means that people have patience and understanding; so that next time you are in line in the grocery and someone is struggling to count their change or the driver in front of you isn’t going 5 miles OVER the speed limit you don’t let it be known that they are interfering with YOUR life. It means - perhaps most of all - being a friend, helping someone organize their kitchen, or taking them out for a walk, sitting with them a listening (yes, even if it’s a bit of a ramble), offering to go with them to a community event, to church, to the grocery – and understanding if they need to leave, if they don’t speak, or if they get sad. It means not dismissing as useless or worthless or less than a person who’s speech is broken, who’s thoughts may seem randomized or who forgets to ask you how your kids are –maybe even forgets that you have kids. It means learning how to help them redirect without attacking their spirit. It means that we DON’t cut services and limit resources because we have written these folks off. It means that we embrace differences, really embrace them and recognize perseverance, tenacity, creativity, patience, new ideas as valuable contributions to our society.
When it comes to the tools for healing we need to step out of the surgical suite and pay attention to what comes after that. Cognitive rehab is a lifelong process; but it doesn’t have to be a chore, it can happen all the time, in all aspects of what we do. But it does take acceptance, it asks that we don’t berate failures or mistakes, we don’t unempower people by taking things away but rather we give the time and effort to helping them understand, learn and development the approach they need. It means we do not judge.
Far more needs to be done with understanding how people can ‘rewire’, both in terms of developing new neurological pathways and in neurogensis. We do not understand how physical activity, cognitive activity, nutrition and environment interact. We do not know which folks will benefit from hyperbaric oxygen and who won’t. We don’t know what kinds of therapies are effective, how long and in what combination. We don’t know how to rebuild executive functions such as multi-tasking and organizational skills in a world which places a premium on those abilities. We do not even know how to identify strengths and build on them. I believe that if we put the money and time into it we can, in 10 years, look back on this time and reflect on the crude and simplistic approaches that were used. Or perhaps not – the choice is up to us.
I have nothing but the utmost admiration for Gabby Giffords; from all accounts she is intelligent, tough and humane. She has achieved a lot and has been through a lot – having good things on your side doesn’t diminish that one bit. However for most civilians and for most Vets a supportive community (be it family, friends, employers or the guy next door), financial safety, good medical care, access to a wide range of health inducing programs and opportunities to do productive and supportive work are sadly lacking. All too often the tremendous struggles of these individuals is hidden in shame, in fear, in despair. For this reason suicide is epidemic in the military and significantly more prevalent among TBI survivors in the civilian populations. We offer palliative services and ignore the root cause.
The disabled are, after women, the second largest demographic in this country. They are not always ‘organized’ in the way other groups are but more and more I see this changing. The disability community is the canary in the coal mine of human and organizational dynamics; they speak to humanity, diversity, to creativity and to collaboration. When we can stop seeing individuals as defective, less than, impaired we can start truly provide the tools that are needed to rebuild, to reintegrate, to be part of and not apart from. I have yet to see or hear a single politician acknowledge the significance and importance of this demographic. Let it be known; there are 50 million of us – and we vote – just like you.
Rebuilding after brain injury is about composing a new life, note by note. Whether you are 23, 43, or 55 this is not easy. Many in this country would like to turn away from this, pretend that a brain injury takes you out of the picture, a side line to life – take some disability money and stop bothering us. But I believe that there we could have a lot of ‘miracles’ - if we change our thinking, if embrace instead of dismiss, if we listen instead of judge. And in the process we could compose a new symphony – one that includes all of humanity.
