Life after concussion

Refraction
By Katie Neustaeter
September 16, 2018 - 5:00am Updated: September 25, 2018 - 9:06am

I'M A PRETTY TOUGH COOKIE.

(Suggested listening while you read: Bluebird by Luca Fogale.)

I once walked around on a broken kneecap and torn meniscus for a week before realizing I needed medical attention. When I dislocated my jaw, I popped it back into place on the field so I wouldn’t be pulled from my soccer game. Two out of the three times, I gave birth to my large-headed babies without drugs. (Side note: the third time, I had an epidural and I cannot say this loudly enough: Ladies, get the epidural. You can thank me later.)

I’m not telling you this to brag; I tell you so that when I say that sustaining a concussion was the most debilitating, defeating and difficult to recover from physical experience of my life, you will understand the context in which I say it.

I have always taken too much pride in my ability to “power through” pain, but friends: you cannot and should not power through a broken brain.

In addition to the physical pain (blinding migraines, extreme dizziness, constant nausea, overwhelming sensitivity to sound/light, etc.), a concussion felt like becoming a zombie: void, disoriented, absent and hollow. Problem-solving, decision-making and forming opinions were often impossible and the lack of emotional control was stunning.

It all left me suddenly wondering, “Is this who I am now? Will I just be an empty shell forever?”

I’m writing about this now for two reasons:

  1. A number of my loved ones have recently also sustained traumatic brain injuries (TBIs), and their experiences, fears and suffering have been similar to mine. It’s been an important reminder that although there is now an increased awareness about the seriousness of concussions, we still have a long way to go in understanding how to properly care for ourselves and others after a concussion.
  2. September 10 was World Suicide Prevention Day and as I’ve been thinking about both concussions and the prevention of suicide, Ty Pozzobon keeps coming to my heart. Ty was a 25 year old bull rider who sustained many concussions in his line of work and took his own life in January of 2017, once again tragically highlighting the correlation between brain injury and suicide. Ty’s heartbreaking death is not unusual for people who have suffered brain injuries and, like so many others, Ty did not overtly appear to be suffering; his suicide took even people closest to him by surprise. The more we talk about concussions, the better we will understand how to cope with and care for them, which will quite literally save lives. (Click here to learn about the Ty Pozzobon Foundation.)

My long road of healing is far from done and I will never be exactly who I was before, but I’ve learned a few things while recovering that you probably will not be told in the ER.

I hope you’ll find them helpful:

  1. Belittling, a lack of compassion and outright condescension are not unusual when discussing your concussion with others — including medical professionals. Because TBIs are invisible injuries they are hard for people to understand or sometimes even believe and so they can be substantially harder to cope with than something obvious like a broken leg. Do not allow the shame you feel when people say insensitive, impatient or self-righteous things to interfere with your healing or your self-worth; their ignorance has no bearing on how legitimately hurt you are. You cannot “suck up,” “just get over” or rationalize away the pain of a concussion; that’s just not how it works, no matter who tells you otherwise.
  2. Say yes to any and all help. This is harder than it sounds, but if you’re ever going to humble yourself and receive the generosity of others, now is the time. If you are supporting someone with a concussion, ask specific questions like, “Can I bring dinner on Monday?” rather than “What can I do?” Decision-making is incredibly difficult when you have a brain injury, so make the options as simple as possible while still respecting the dignity and autonomy of the individual.
  3. As soon as possible, find physio and occupational therapists who know concussions. My physio and OT's knowledge, treatment and resources were the beginning of hope and pain relief for me. I also wish I had known about Concussion Clinics and that the Kamloops Brain Injury Association wants to help you no matter the severity of your TBI.
  4. I did the weirdest things when concussed: filling a vase of flowers with boiling water, repeatedly trying to unlock the house door with my vehicle keys, putting milk in the pantry, wearing socks into the shower, etc. Try to laugh about those things, even in the pain and confusion a sense of humour just might be your saving grace. I also did some less funny things: leaving burners on, forgetting where my kids were, panic attacks in the grocery store, etc. Those things are scary and you don’t have to laugh about them, but you do have to find systems to help prevent them from happening again. (Lists, tell someone where you’re going, bring a friend shopping, etc.)
  5. Healing from a concussion is not a linear process; it looks less like a straight line drawn with a ruler and more like a roller coaster designed by a toddler. The degree to which a person heals and the rate at which it happens after a TBI is individual. There are commonalities, but it’s your journey; try not to judge yourself too harshly or by anyone else’s standards. You will not wake up tomorrow and be the same as you were the day before you were hurt. Lower your expectations and be kind to yourself; you’re healing.

On a very personal note: as a woman of faith, this was also an important time for me to rest in the faithfulness and security of God, who was as invisible but ever-present as my injury itself. He was my constant lifeline.

There is still a future and a purpose for you, even if the dark, lonely and defeating nature of a concussion tries to convince you otherwise.

Concussions can isolate you both physically and cognitively, but remember that you are not alone. You are loved and there is vibrant life waiting for you after a brain injury; don’t give up, no matter how long it takes you to get there.