Same Face, Different Brain: Learning to Live with Chronic Pain and Ableism After a Brain Injury

By N. A. Kimber

Let’s begin with the facts. On May 18th, 2015, I was in a car accident. Only five minutes from home, on my way back from a long weekend. I was in the front passenger seat. We got hit while making a left-hand turn into our friend’s subdivision. The airbag deployed and hit me in the side of my face. My seatbelt constricted around my neck.

I remember it all very clearly. The car just before it hit us. Me screaming the driver’s name. The impact. The spin. The stop. The ambulance.

Then there is the aftermath.

It begins in a hospital room, waiting for a diagnosis. I’m given inconclusive results and told to follow up with my family doctor because the emergency room doctor doesn’t do car accidents. I tell the next doctor I see that I have had a headache since my accident, but they only check out where I have injured my neck and shoulder.

It is a week spent in fear and confusion, head pounding, neck screaming, before my mother forces me back to see a different doctor, who, within just a short time spent looking at me, can say: you have a concussion, you need to go to physiotherapy.

I thought a diagnosis would make all of it easier and that it would go away in no time. That, because one doctor had believed me out of three, surely the path would be easier from here.

I was wrong. It has been over seven years now. Things have gotten better, but the pain has never truly gone away. And I have had to spend all seven years defending my injury. Defending its existence. To doctors. To strangers. To family. To friends. It never mattered that I had documentation. That there were some doctors on my side. That anyone who truly knew me could see the change in me, even if they could not describe it. It never mattered; they could not see it.

The funny thing about fighting to get better is that people will believe that you already are before you are. How can you possibly be injured if you are able to get up in the morning? If you can move, even if you are now somewhat limited. How can you say that your symptoms impact you when you are still getting good grades? You can’t really be that bad off if you were able to do things the other day – you must just be feeling lazy.

In the beginning, people defend that they didn’t ask how you are doing because ‘you look fine’. After seven years, you can imagine that it is rare for anyone to ask how I am doing at all. But of course, to them, to the family, the friends, the doctors, the strangers who don’t really know me, how could I expect them to know that I’m not okay? Truly? How could I expect them to understand?

Understanding is all I want. I’m not asking for them to feel the pain. To take it on. I’m not asking for them to listen to me complain, or to cry, or to grab me the Tylenol for the third-worst headache of my life in a day. I’m not asking them to forgive me right away or let go of when I am mean or cruel because I am overwhelmed, in pain or at my limit because of this injury. I’m not asking them to stop living their lives.

I am still capable in so many ways. I just want to be listened to. To have my limitations heard. That when things are overwhelming, there is an understanding that this isn’t me, that sometimes who I am is beyond my control. That the injury has made me a different person than I was before the accident.

I want them to understand that I still don’t recognise myself when I look in the mirror now, and it frightens me, even seven years on. I still fight against it all these years later. I don’t understand how people cannot see it. Because I am still trying so hard to go back to who I was. One of the saddest parts for me is that I didn’t even have the chance to say goodbye or to mourn the girl I used to be.

It’s true. I look fine. They will always say that to defend themselves. The friends you have not seen for a long time will say it; your family that just still can’t understand it; the doctors who don’t know you who think you are wasting their time because it didn’t show up on a CT or an MRI.

Some will even suggest it is just your hormones, and you will stomach the urge to call them a sexist as you calmly remind them you are on birth control and your hormones are regulated. Strangers you meet in the worst of appointments will feel they have the right to say it, too. Sometimes you will even say it to yourself. To defend them. To make sense of why, it seems, no one in the world cares.

But it doesn’t make sense. After seven years, it still doesn’t. Seven years of learning to and advocating for myself. Seven years of telling people my limitations, my injuries, what I can and cannot do. Seven years of chronic pain and a brain injury I fear is permanent.

Still, they defend themselves: ‘well, you look fine.’ Yes, I do. That is the curse of an invisible injury. It gives everyone the right to forget about it.