Brain Injury Awareness Month, my Story - what I have Learned.
Updated: Mar 4
How the sun makes me smile - it just replaces a spring in your step as a reminder that there's always brighter things. It expects nothing in return for the adventures you can have when it adorns brightly the skies. Misty haze that rises from the slowly waking horizons - the chill awakens the mind, the sun paints iridescent colours that spill out the ocean before me as I step in. One foot further towards immersion in cold 7 degree water. The thrill of the courage, the cold embraces my skin and with a deep breath, I am in, I am there, I am cold body in water salty and healing. A wave breaks over my head and I beam. Not many things make me smile like the sea does. A deep, 'I own my life, myself' knowing, confidant smile.
Today marks a full year since I held Alex, had him next to me, sat with him, held his hand, cuddled him. This year has been ineffably dark and heavy.
As it is brain injury awareness month, I thought I would share my experience with brain injury. It is not my own injury, it is my husband's, but the damage was so severe he would never be able to write his own story, and no brain injury is ever isolated to the person who acquires it.
Alex set off to a rugby training session - nervous and exited in equal measure, it was his first training session in over 12 years. Forward wind 48 hours, we are in hospital, he has been diagnosed with a severe traumatic head injury, he has a blood clot on his brain after receiving a knee to the head in the training. It could be reabsorbed into the body or bleed and require surgery we are told; it is a waiting game. For us, these words leave us terrified, like watching a timer on a ticking bomb, for the professionals it was just another standard diagnosis they dished out. I lost my footing that day, I began falling at unstoppable speed until I was eventually awakened by my children and husband needing me to step up and be the strong one.
The blood clot did not simply disperse into the body, it haemorrhaged and after emergency surgery he was in a coma. Then 36 hours later a second bleed meant Alex was not going to survive, if he did the damage would be rife, he would require at the very least 24/7 care and they already knew he was blind as a result.
My world fell out of my heart, I was to attend to the broken hearts of our 4 children whilst trying to somehow staunch my own profound wounds.
Since my husband suffered the severe traumatic head injury, I have had to live with invasion, heartache, stress, trauma, grief, loss, uncertainty, insomnia, anxiety, and I could keep going on this list! For me, brain injury has meant I have never been able to call my life my own since. I became a carer, a single parent to our 4 children, I had to carry everything. There is an unfamiliar and hostile environment that awaits you that you are now expected to navigate, whilst feeling yourself hurtling out of control towards inevitable catastrophe. I dreamt shortly after the accident that all the children were on a merry go round that took off and flew up into the air as I watched on, helpless to do anything.
When you lose someone to brain injury, you become trapped between two worlds. The world you had and the one you are now expected to live in. You exist in a liminal expanse, standing still, rooted to the spot rocking to and fro between these worlds. You have lost your person as they once were, you have lost a myriad facets of life, existence, personality, character, coupleness and family on every dimension: the past, the present and the future. Meanwhile having to deal with living with great uncertainty and the ricocheting effects of trauma, grief, and total bewilderment.
What I have learned
9 1/2 years on, I still have nightmares most nights. I sometimes have night terrors but for the most part I am relieved to be free of the insomnia and the terrors that would fling me awake ripping sleep and rest away from me. I have learned about myself, I have taken time to learn who I am, how I respond, who I need to be for my children, for Alex, and I have learned that the most important person for me to be there for is myself. I have also learned that it is self-preservation, self respect, self worth to be there for me - not selfish. I still do everything expected of me, but I weave things into my day that are for ME. My perspective is one of gratitude: I always hold my tea or coffee and give thanks, my plate of food before I eat and give thanks, I have cultivated an inner monologue of gratitude as go about my day. The cold sea is my saviour! I swim almost every day. I know how hard I have worked to therapeutically parent my children, being present and available, I also know I have fallen over, but I believe this is good - it is not our job to demonstrate perfection to our kids! It is our job to equip them with the right tools and skillset to cope and be agile in life. I have been there on a daily basis for Alex, whatever that has entailed: hospital appointments, making them, attending them, care home visits, home stays, carrying out therapies with him, fighting for more, making phone calls, sending emails, researching - it has been relentless and I did not choose it! But in order to cope, with eyes wide open I have flooded myself with those who love and surround me, those who laugh with me, cry with me. I am filled to bursting witnessing with unbelievable pride how my children have grown and developed. I am simply awestruck by these beings. I immerse myself in reading, nature, meditation and eat well. I exercise, get fresh air and above all I TALK! I talk openly about my wins, my struggles, my hurting and my joys.
Learning to live with loss has enabled me to live with more intention, to know that if (and when) I break, I can piece myself back together again, I trust myself.
If I could give some advice
Be yourself, even if it means saying 'no, I am not ok'. Learn about yourself and how you move through the toughness. Learn to weather the storm well - find equanimity. Learn to let everything fall out, learn to be still. Learn to be courage to yourself, by knowing you CAN sit and be with your feelings. I've had to teach myself how to rest, how to be ok with the unknowing. I have had to teach myself how to remain grounded when tornados whirl around in threat. I have learned to notice when I am holding my breath and help myself to breathe again, to breathe into it, through it, beyond it and with it. The most amount of pain I went through was when I stopped - when I paused and stopped running. That's when it all hits, when the earth below you falls away and you slip slide down the rubble into the wreckage of your grief and your mind. But when you are there, buried beneath it all, you suddenly realise that now you have fallen, you do not fear falling anymore, and you rise, bit by bit, sometimes clawing away at the debris with your fingernails, sometimes a whole load slides away and you are aware of the light, piercing through the gaps - a breath, there is life again. You begin to realise that tunnelling your way out is the metamorphosis needed for the next brighter, braver, stronger you. It's the cocoon to furthering your wisdom and groundedness and unwavering knowledge that you've been there and you made it back out.
9 1/2 years on
So, 9 1/2 years on I am a different person. I am a different version of me. I am stronger, wiser, more grounded, more open. I am able to say these days that I am proud of what I have done and who I have become. There's ALWAYS room for improvement obviously! But I am ok being me. Would I swap it all and go back to life before? In a heartbeat. I miss Alex with my whole being, my soul cries for him in the night when all else is quiet. But there is love, there is light, there is more and love, as I have said before, cannot exist without the other side - grief.
Brain injury happens to 1 in 3 people, have you had experience with brain injury? There is an amazing website and resource called SameYou.org, I highly recommend using this as a resource as they have informative content and helpful videos for those who have had a brain injury to aid in recovery at home, even after you are discharged by the system.
On your journey in life, I wish you strength and peace,