I used to often say that I felt I had gotten through life relatively easy, by which I meant I had suffered no major loss, tragedy or death. My parents aren’t divorced, we never moved around, I was given the wooden spoon a few times but basically I’m one of the lucky ones who had a wonderful and supportive childhood.
I’ve stood alongside friends however who have tragically lost siblings and parents, who have suffered domestic violence, assault and family deterioration. I used to watch their lives fall apart and feel almost guilty because my life had always been relatively smooth sailing.
This time last year, I wrote down my biggest fears. Top of the list? That something would happen to a member of my family. For as long as I can remember, it has been a regular belief in my mind that if I suddenly lost my parents or one of my siblings, I would completely self destruct. In some weird way, I also kind of knew it was coming. Why? Not sure. Could be a mishmash of guilt, being the eldest and intuition, but it doesn’t really matter.
What has inspired this post? Well I recently had the pleasure of listening to Carrie Bickmore speak at the Bupa Health Blog Awards in Melbourne about the tragic loss of her late husband. Through tears and obvious pain, Carrie spoke about the way her life has changed. How every single moment counts; just baking muffins with her son is a miracle. How she doesn’t sweat the small stuff as much and just keeps going. But that it’s still really, really hard. The whole room was wiping away tears, tremendously moved and inspired by her courageous honesty.
Before we get started, you need to know that I love my life. I’m a big believer in positive thinking. I am happy. I am filled with gratitude, joy and wonder. I love sharing my passion to live a healthy, happy life with the world. I ain’t writing no pity party invites. But I also believe in honesty and authenticity. I believe we need to reach out when we need help or admit when we’re really struggling.
A close friend told me recently she felt I was using this blog as a distraction from what is really going on in my life. Maybe. There isn’t necessarily anything wrong with that, as long as I’m not pretending on here that everything is all smiley-happy-puppies-and-unicorns all the time, because that’s just not the case.
This same friend was surprised when I completely lost my shit over the phone with her on the weekend. There were tears, swear words and let’s just say I got a lot of weird looks from people on the street. ‘But you told me you were the happiest you had ever been 3 months ago?’ she cried, ‘How was I to know you are hurting so much?’
And she was right. I haven’t been completely honest with her, with my friends, my family or with myself.
On the 16th December 2012 my brother Sam was involved in a motorcycle accident that left him in a long term coma with a catastrophic brain injury. You can learn more about the severity of his injury here but basically, 90% of people with this injury never regain consciousness and the 10% that do are often severely impaired. Even writing those words now makes me feel sick.
Everything changed in a moment. Life’s like that, y’know.
We were told that Sam would never open his eyes. We prepared ourselves that he would most likely spend the rest of his (what would be a reduced expectancy) life in a comatose state.
The first month is a blur. Hospitals, ICU, no sleep, phone calls, heartbreak, Christmas, guilt, hope, infection, tears, anguish, stress, laughter, uncertainty. I never knew you could actually wake up crying or what it’s like to have to force positivity or experience anxiety.
Sam spent approximately 3 months in a coma and is now a resident at Shenton Park Rehabilitation Centre in Perth. While he cannot currently speak or move his arms or legs, his awareness increases everyday and he is making incredibly progress in speech therapy, OT and physio. On the weekends we are able to bring him home or take him to the beach. Grateful.
He smiles, nods and shakes his head to communicate. He is starting to gain more movement in his hands. He’s kicking goals everyday and he certainly has not lost his sense of humour. He smiled at me recently, shaking his head, when I rocked up to the rehab hospital in my patterned yoga pants. I could almost hear him saying ‘But seriously, what are you wearing Claire?’
We are completely unsure as to what will happen in regards to Sam’s long term recovery, accommodation or what his or our lives will look like. But we have looked the devil in the eye and lived through our biggest fear, so what else could shake us? What else is there to be afraid of?
Really, we are only at the very beginning now. Delving into the confusing, mysterious world of brain injury. Learning to live with disability. And determination. Finding acceptance. Somehow. Loving my brother even more than I ever thought possible. Being the proudest big sister in the whole world every time he makes a gain in therapy. He spelt my name the other day using an alphabet board and a buzzer attached to his thumb. No words. I mean fuck, how many emotions can one person have when something like that happens?
There is so much more to say. This event has shaped my life, it has changed the way I perceive everything. But it’s still really, really hard. Living with my parent’s grief, devastation and loss alongside their strength, patience and compassion is a mind-fuck. It’s transformational.
I miss phone calls from my brother, I miss planning trips away with him, I just miss the sound of his voice. I miss his hugs, his random text messages, his ability to calm me down, his jokes, his farts, his shoulder to cry on. I’m torn between mourning him and the crazy joy I have when I’m with him now. My heart hurts when I think about how hard this must be for him. I’m sorry, I have to stop here on these thoughts.
This has been the hardest 7 months, 216 days, 5,184 hours I have ever lived through. But in that time, my perspective on life has completely transformed. I see everything differently now. This is life and it has it’s ups and it has it downs. You just keep going. Maybe I am the happiest I have ever been. Maybe I’m the most miserable. I don’t know. I think I’ve just found the simple joy of being alive.
“It has never failed that when I have been through the most heart-breaking passages of my life — betrayal, financial hardship, divorce, dreams dashed — the pain brought me to the floor of my being, and what was there to be found?: The simple joy of being alive. So cosmically basic it’s mind-blowing: the joy to be here, connected, animated, breathing, blessed, resilient, to be broken, to be open, to have what was, what’s left, what’s coming. The joy just to be part of reality.” – Danielle La Porte
I’m not trying to claim to have all the answers, hell I certainly do not. But I do want to share my story in the hope that it might give others strength, perspective and hope. And permission to ask for help, to tell people you are hurting, struggling and how you really, really bloody feel.
What I do know is this. When life changes forever you learn to appreciate every single day, hour, minute, moment, breath, pause, reflection, laugh, meal, conversation, experience, pain, joy, drive, walk, shower, kiss. Every hot chocolate, train trip, day at work, bill to pay, run in the rain, phone call, afternoon nap, rejection, email, glass of wine, movie date, pair of jeans and opportunity. Every YouTube video, argument, cafe breakfast, new friend, disappointment, picnic, cold morning, traffic jam, macaron and pay day.
You appreciate it all. Because this is life.