Looking Forwards and Back: A Letter to Myself

Charli Skinner sustained a brain injury after a fall in the bathroom in September 2018. She sustained tens of concussions from sport in years prior, but recovered quickly from these. She uses her voice and writing to advocate for invisible injury and chronic illness. As an active sailor, backcountry skier and adventurer before her injury, she is learning to adapt and return to the things she loves, sharing how movement and the outdoors has played a key healing role in this process. Most recently, she sailed across the Atlantic Ocean and is planning a number of other expeditions. You can follow her journey and find some of her writing on Instagram (@charliski).

In the days that you cannot open your eyes, stand up without passing out, let alone make yourself a meal, you will feel trapped. You will feel as though life is not worth living. You will think this over, and over, again. In these moments, you never envision that through a combination of small victories, nearly two years down the line you will have sailed across an ocean, summited mountains, and be working through grief and trauma.

Days will blur into one, yet at the same time each second will feel excruciatingly long. Your thoughts will be jumbled yet clear; you will feel completely and utterly aware of every moment of your own unravelling, but unable to form a conversation for more than 10 minutes.

You will feel like you are watching yourself from above, as your thoughts and memory slip away from you. ‘Did I remember to eat lunch today?’ You will find the milk in the dishwasher and your clothes in the fridge. While a little silly, that will provide you a moment of light relief (it happens nearly every day). 

The first time you look at a page and try to pull the jumble of words together, you will wonder if you will ever again feel the joy of reading someone else’s story. When you finally do, you will look back on those days and realize how far you have come.

You will spend hours trying to read one medical article and days to muster the energy to call the doctor to request the referrals you need. The myriad of symptoms (loss of cognitive function, short-term memory and vision, nervous system dysfunction, impaired mobility, dizziness, neuro-fatigue, nausea, insomnia, and perhaps the most difficult of all: severe depression) will continue to present themselves without relent.

You will fight. You will fight for your right to care. You will not take no for an answer. You will be dismissed, you will be told ‘it’s all in your head’. But you will push on. 

You will go from waiting room to waiting room, the majority of the time with your head in your hands, wearing sunglasses and earplugs. Or simply, just asleep until you hear your name falling off the tongue of another medical professional. Eventually you will end up seeing a combination of specialists in neuro-psychiatry, therapy, vestibular rehabilitation, neuro-ophthalmology, neurology, rheumatology and neurophysiology. When you finally hear the words ‘brain injury’, ‘dysautonomia’ and ‘Elhers Danlos Syndrome’ from a neurologist after months of seeking answers, you feel heard and validated.

You will also feel alone. You will learn that sometimes, the best thing to do for someone is to simply be there, to sit with them. So few of your friends will understand. You neither know how to explain it to them, nor do you have the energy. Grief becomes a familiar visitor. You grieve your old life, your old relationships, your old self, you also grieve what never was: the times you thought you’d have. Yet that loneliness, grief, uncertainty and isolation will teach you so much. You will become resilient.

 When spring comes, you will watch the swans as they nest. Their eggs will hatch, they will grow, they will learn to fly and they will leave their nest. While you didn’t leave your nest for a very long time, you were doing the work to provide the foundations you needed. Lives will spin madly on around you. Your foray away from modern life will remind you the values of sitting with yourself and of simplicity. Time -- a concept that is lost on so many, becomes your best friend.

When you first share your story, you will receive messages of encouragement and some advice, but still feel stuck. People’s attitudes around you will slowly change. It takes work, but it happens. You will discover the brave and vulnerable world of ‘people like me’. This world will open a gateway of possibility, learning, understanding, and hope. You will learn more about the world of disability and how this world really is only made for ‘able-bodied’ people. You will start to advocate. You will return to work; in a society built on the belief that bodies that are not ‘productive’ do not have worth, you fought back. You fought for accommodations (a phased return, remote set-up, pacing breaks, dictation...the list goes on). You did that all, with a brain injury. 

You will dance on the fine line between survival and living. You will see how much other’s actions and support can tip that balance. A friend, who is a true source of light throughout this process, will say to you: ‘The dance between doing what is needed and doing what is wanted, is difficult for others to see. Because looking from the outside, you are a great dancer.’ She will articulate precisely what you have found so hard to, until now.

You will write, you will draw, you will cry, you will laugh, you will move. You will speak to some people (mostly your therapist to begin with) on end about your shame, trauma and your darkest moments. To others, you will say nothing. You will learn boundaries. As someone who always wanted more, to do more, to see more, to give more, boundaries will be a hard lesson.

The first time you cook yourself a meal from scratch will be on a summer night, after what felt like a sweet day. It is eleven months post injury and to date microwaveable meals have been another one of your best friends. The day will taste even sweeter. That small victory makes you smile. Smiling is starting to creep into your life more these days.

You start to swim again (figuratively). Your heart, amongst many other things, is still not fully working, but your hormones are finally re-regulating. And you will go to the gym five times in one week. Holding hands with time, exercise will also become your best friend. You will go from walking on the treadmill for ten minutes, to lifting weights and training properly again. Routine: sleep, medicine, eat, exercise, repeat; is your new mantra. You will feel stronger than ever before; importantly, physically and mentally. 

You will start to make plans. One of the biggest plans of all, will be the plan to cross an Ocean. You are scared, ‘what if my injury and illnesses get in the way, what if I am a let down, what if…’ the list goes on. But as you sit on the deck of a boat, in the middle of the Atlantic Ocean, you will watch the horizon as it moulds into the distance. You will feel at peace. You have never felt such an exhilarating wave of calm in your whole life. This moment will last for a lifetime, in a way that feels good, this time around.

More adventures arise, things you would have easily done before, but now require a higher level of planning, pacing and energy. You use your own two feet to carry you thousands of metres up a mountain without stopping, you will think about all the tiny steps that got you there. You will breathe deeply and feel the air. You will savour every, last, molecule.

The little adventures will count too, weekends in the hammock, reading books, swimming in the sea, or simply just being. In fact, you will realise, the little things in life are what matter the most. You will want the world to understand that this is not about inspiration, getting through a day with brain injury is just as important as anything else.

When the rest of the world turns upside-down so suddenly in early spring 2020, you realize, you have done this before and you can do it again. You have hope that people are starting to see a small slice of what it is like to live through our eyes. That they will see, those of us who have been through isolation and challenge have so much to offer.

Don’t be so hard on yourself, Charli. Your hope, your toughness, and your softness have carried you this far. You still live with brain injury, it tests you every day; you are still working through trauma, but you’ve done so much more. You’ve seen sunsets and sunrises that look like they will never end, you’ve felt the wind in your hair and the rain on your skin. Moments of pure joy are more intense than ever before. It is the same for pain. But remember, without knowing the true cost of pain, you would not be where you are now. You are adapting to your new life and everything that comes with it. Some will never experience something like this. You will be grateful, for so many reasons, that you have.