The same you

Earlier this year, actress Emilia Clarke, famous for her role on Game of Thrones, publicly shared her experience of surviving two brain aneurysms. In a first-person article in The New Yorker and follow-up interviews, she recounted exercising with her trainer one February morning in 2011, then suddenly feeling as if “an elastic band were squeezing [her] brain.” Her aneurysm led to a stroke. Clarke had no time for medical emergencies and brain damage. She was busy riding the wave of success from season one of Thrones. Clarke went public with her story to launch a foundation funding research into rehabilitation for brain injury and stroke for young people.

The foundation’s name? Same You.

I paused as I read the foundation’s name and mission on their website. I reflected on all of the longing and optimism wrapped up in those two words.

Same You.

Clarke’s foundation is partnering with leading medical institutions in the UK and US. Working with the Royal College of Nursing UK and Spaulding Hospital in Boston, it plans to “pioneer integrated physical, cognitive and mental health neurorehabilitation nursing care” (sameyou.org/about). This kind of integrated approach is overdue in our “medical-industrial complex” (Eli Clare, Brilliant Imperfection: Grappling with Cure), which often treats symptoms of brain injury and stroke in isolation.

As I read and listened to the interviews with Clarke, I waited eagerly for her to recount her own experience with rehab. I wanted to know--did she go to speech therapy so that she could return to memorizing lines? Did they send her to vestibular therapy so that she could balance, run, ride dragons again?

I found nothing.

Strangely, Clarke is silent about the very thing she hopes to “fix” (sameyou.org). From all accounts, she had emergency surgery after her stroke, was in the ICU for a month, then was rushed back to a full schedule of promoting Thrones. “Recovery was hardly instant…[but] the show must go on!” she writes in The New Yorker.

After surviving a second aneurysm and another surgery in 2013, Clarke writes of her recovery, “I have healed beyond my most unreasonable hopes. I am now at a hundred per cent.”

As I read her words, I am haunted by the countless number of times I’ve been asked by doctors and therapists “what percentage recovered I am” or “what percentage I am feeling today.” I recall the moments in which I started to accept the fallacy of the question. I remember when I asked my neurologist politely but firmly to stop asking.  

Perhaps we’ll never know what kinds of rehab Clarke went through. We are left to wonder about wobbly steps, stutters and slurred words, shaky hands. I wonder if Clarke is silent about the difficulties of recovery because rehab is not linear or clear-cut or beautiful. It is not made for a media soundbyte. It can be deeply frustrating and shameful.

I worry about Clarke’s push for the same you because in our ableist society, it is already difficult to value our present-day selves when we experience disability. “We find ourselves lacking,” Clare writes in Brilliant Imperfection. “Cure...can lead us to dismiss the lessons we’ve learned, knowledge gained, scars acquired. It can bind us to the past and glorify the future. It can fuel hope grounded in nothing but the shadows of natural and normal.” These feelings are particularly acute when natural and normal once came so easily.

I am frustrated that wrapped up in same you there is no mention of you, today. Clarke’s charity follows the pattern of other disability-focused organizations by investing in “cure just around the corner” (Clare, Brilliant Imperfection) instead of or in addition to asking what brain injury and stroke survivors need today. Advocacy for accessible spaces, employment, financial assistance and mental health care are left off the table. “What do we need to make peace with our visceral selves today?” Eli Clare asks.

Same You’s subliminal message to survivors who are not at “a hundred percent” is that if only our rehabilitation had been better, more complete, we would be who we were before. Maybe we would even be riding dragons on television. Until care for brain injury and stroke improves, we should continue hoping for “full recovery,” instead of recognizing what we’ve gained along the way.