Content warning: brain injury, physical trauma, mental health, depression, anxiety, ableism, pain
How do you commemorate the accident that disabled you? Or should you at all? This is something I had been pondering a few weeks ago, leading up to March 5th – the one-year anniversary of my bike accident that was the start of my current life as a disabled person living with post-concussion syndrome (PCS).
Today – March 18th – is Brain Injury Awareness Day in the U.S. (and March is Brain Injury Awareness Month; though in Canada it’s June). In honour of this, I am sharing with you how I chose to acknowledge the anniversary of my brain injury a couple of weeks ago. On the day of the anniversary, I wrote a letter to my former self (pre-concussion Julie) from my current self (post-concussion Julie), explaining my experience over the past year. I then took the letter to a park, burned it, and rubbed the ashes on myself as a symbol of purification. The whole process was emotional and therapeutic, and I’m glad I was able to honour both the accident and myself in this way.
Before burning the letter, I typed it up to keep a copy. While it is very personal, I have decided to share it here – to help raise awareness about brain injury, as well as to help those around me understand what I am going through. Perhaps other brain injury survivors will relate, though I would also like to express a trigger warning for those who may have had similar difficult experiences.
Dear Pre-Concussion Julie,
How are you? How is life back in early March 2014? I’m guessing swell, as things seem to have been going pretty well for you: you’ve been working a wonderful, new job for the past half year with your dream employer; you live in a beautiful intentional community; you’re involved in various fulfilling volunteer initiatives; you enjoy spending time with friends; you are often found cycling around the city….
Many of these things are going to change for you. You’re about to have an accident that may not seem serious at the time, but will drastically affect you, your abilities, your life. The bike accident will be painful and traumatic, but it’s not the broken nose, cuts and bruises that will change you – it’s a concussion/mild traumatic brain injury (mTBI) that will have not so mild lasting effects, in the form of post-concussion syndrome. For the next year, and who knows how much longer, you are going to struggle with your brain, your body, your identity. Be brave.
Your brain is going to function differently. You are going to have trouble concentrating and will be slower at thinking, focussing, processing, remembering, and doing. But this is ok. When you get frustrated, be patient and kind to yourself. Give your brain breaks when you get overwhelmed and over-stimulated.
You are going to be in physical pain and discomfort. The constant headaches, light sensitivity and extreme fatigue are going to be overwhelming and prevent you from doing many of the things you did before. When you are tired of resting, remember that learning to rest is a gift that will benefit you for the rest of your life.
You are not going to recognize your emotions, behaviours, or personality. You will wonder who you are as you experience anxiety, depression, anger, paranoia, self-centredness, and mood swings. When you can’t get out of bed because you hate yourself and are scared to interact with others, acknowledge that this person you are is just as valuable and worthy of love as the person you were before. Show yourself some self-care, or ask someone else to show you some if you can’t yourself.
You are going to try a multitude of things to help you heal and ease the symptoms, including seeing countless healthcare professionals (physiotherapy, osteopathy, vestibular therapy, chiropractic, acupuncture, naturopathy, psychotherapy, mindfulness based stress-reduction) and trying various DIY therapies (nature therapy, dark therapy, supplements, an anti-inflammatory diet, essential oils, Epsom salt baths). Some of these may seem to help more than others, but you will keep trying and continue to research new options. When you feel fed up, that “nothing seems to work”, and you feel weighed down by the financial difficulty of paying for so many treatments (especially while off work), remember that healing is a journey, not a destination. Think about the many benefits that will have come, in part, from these therapies, despite the ups and downs: stress-reduction, gut healing, reduced joint inflammation, increased awareness and knowledge about your body, and having tools to deal with heightened symptoms. So many positives will have come from the time, energy and money you (and others helping) will have put into these therapies and efforts. When you feel guilty because you know not everyone in your situation has access to expensive therapies, remember that this is a systemic problem and that you alone cannot make healthcare truly universal and accessible – we need to work on this collectively.
You are going to be off work for an extended period of time, causing you financial stress and a sense of loss of meaning. You are going to question your self-worth, as you are unable to keep up with your job, volunteer work, or other community involvements. But reading about disability activism will give you hope, as you learn that “productivity” is a misconstrued concept in our capitalistic, individualistic, workaholic society. You will find other ways of feeling self-worth and “contribution”, including speaking out about lack of accessibility in various contexts, writing about your experiences, having meaningful and impactful conversations, and finding identity in the disability community. Remember that you are of no less value because of your disability or lack of finances.
You will have a lot of “down time” for necessary resting that will sometimes cause you anxiety as you struggle to truly relax and rest. But having this period of time to focus on resting and to explore and discover practices that help you relax is going to serve you for the rest of your life – so that you can be less stressed, prevent burnout, and improve your well-being. You will discover some talents you didn’t know you had, and some pastimes you didn’t know would bring you so much joy and expression, in addition to relaxation. You will explore writing, drawing, cooking, nature walking, language learning, and more! Remember to continue practicing these activities that bring you joy and creativity (in their adapted brain-friendly ways) throughout your life.
Many of your interpersonal relationships are going to change – some friendships will be lost, some will be gained, some will shift. There are people in your life who are not going to respond well to what you are going through; they may not understand, have patience, or care. Some people’s true colours will come out in your greatest time of need, and this will show you who your true friends are. Go ahead and mourn the loss of these relationships, but then move on – there are so many other wonderful people in your life who are worth putting energy into. Some of these important people will make mistakes, and will cause you stress, hurt, and harm; but they will keep trying to learn and understand your needs – be patient with them, as they are learning to be patient with you. You will become closer to some people in the process, and less close to others. This is ok and part of life. Also part of life is making new friends – which you will also have the opportunity to do! Along the way, you will meet and connect with all kinds of interesting and wonderful people – through brain injury and disability communities, via online activism and networking, while exploring new activities and therapies, and when new housemates move in. You may not know yet if these are “friends for a reason, friends for a season, or friends for a lifetime”, but cherish your moments together as they contribute to your life and healing.
I’m not going to lie – this next year of your life is going to be very difficult. There will be pain, confusion, despair, loneliness, and tears. You will feel you have lost the person you once were, with uncertainty of whether that person will ever fully return. It is ok to mourn the loss of that person. Maybe they will come back; maybe they won’t. But, for the time being, they aren’t going to be there, and you will need to let go of that. Cry when you miss them, scream when you feel abandoned by them – but remember to love the person you are in the moment.
The person you will become is a beautiful, strong soul. You will be scared and scarred, yet also courageous and resilient. You will have many unanswered questions, but you will stay strong in trying to learn and grow. You will feel like a failure at times, but you will take comfort in knowing you are having a positive effect on others. Sometimes you will feel uncared for and you will not have your needs met; but your fight for accessibility and support will empower you to go on. This struggle will make you stronger, and what you learn from the experience will help you become better at self-care, empathy, and love. Remember to honour this beautiful part of who you are now.
Take care, old friend. I’m not sure if or when I’ll see you again. Be brave, strong and courageous – your life is about to get interesting!
Sending you love and resilience,
March 5, 2015