It is often said that brain injury survivors and their loved ones pass through a number of stages as they adapt to a new life living with the long-term effects of their condition.
The initial shock of the injury is often followed by elation that the person has survived, which can then be replaced by frustration and denial as it becomes apparent that life has changed forever.
With the right support, many people will move on from this and reach a level of acceptance that allows them to live a fulfilling life as ‘a new me’, recognising that while the old person has gone, the new person can thrive.
With the launch of our Action for Brain Injury Week campaign exploring this theme, we asked our online community (using their real names or online profiles) to focus on a key event that can put the effects of brain injury into stark focus – the anniversary of their injury.
Is it a time of sadness and loss, or a time to reflect on the progress and achievements of life as a brain injury survivor?
The early stages
The first few years are, perhaps predictably, a difficult time as the effects of the injury are still new and developing.
“For a while I assumed that after 12 months I’d be fully recovered,” said SideKickPete on the charity’s HealthUnlocked forum. “I am doing well, but I now know that I probably won’t ever be fixed fully. I am nearing my anniversary. I don’t know if I will ‘celebrate’ as such. I’ll probably give my parents a big hug.”
Even a seemingly minor injury can have a lasting effect, as Liz Meddings explains: “I’m coming up to my one year anniversary of my concussion. I’m feeling frustrated at my lack of progress in getting back to working full-time hours.”
Laura Fielding highlights the rollercoaster of emotions that an injury anniversary can bring: “I’ve had the second anniversary of my accident and it is always a tough day, full of tears and quiet moments. I try and keep myself busy and acknowledge how far I’ve come rather than dwell on the negative long-term effects that I can’t change.”
Gaia_rising talks of the difficult stages of coming to terms with the effects of an injury: “I thought that the first anniversary last year signalled an ‘acceptance’ for me; that my life had changed beyond recognition, but I was getting on with it.
“I’m coming to realise now that it was probably more of the denial that I was different, rather than the acceptance. Two years next month, and I’m a ‘walking, talking living doll’, because I won’t let other people see the ‘sleeping, crying’ bits.
“As far as everyone else is concerned, I’m ‘better’. I am better than I was on that day, and on the neuro-critical-ward days that followed, but I’m not all-of-me anymore, and, after something of a relapse, I’m struggling with that emotionally.”
Missing the old self
“I hate my anniversary. It just makes me remember what I was like before that date,” said Sarah Field. “On that date I changed 100%, which really hurts. I just want to be my old self.”
StrawberryCream recognises those feelings: “I am stuck and find it impossibly hard to move on with the ‘new me’.
“Anniversaries are even more poignant with making me think lots about the life I had before, which was in a really good place. So I feel angry/devastated/upset that my life has been thrown back into everyday struggles with a brain-injured me!”
For Claire Louise Steen, the reactions of ‘well-meaning’ people just add to the difficulty. “I don’t necessarily focus on the anniversary but I do find myself actually permanently attached to the event and everything that happened afterwards,” she said.
“It was life changing for me in an unfortunate way...my worst issue is that I can’t be open about my condition without someone belittling me and saying ‘but look how far you’ve come’, like it was easy?!”
A new me
We were struck by the importance many people place on celebrating their brain injury anniversary as a time of positive change. For many, this is something that is achieved over time, and the path to acceptance is rarely easy and never guaranteed.
“Mine (anniversary) was 12 years in January,” said Lisa-Marie Russell. “I always celebrate it as a new birthday because if it wasn’t for my accident I wouldn’t be who I am now. I’m so grateful to still be here to celebrate it.”
Leah Blake takes a similar approach: “I celebrate it as a new birthday and I remember how far I have come.”
Similarly, Deb Grant talks of reaching a more positive mindset seemingly against the odds: “Anniversaries are a positive time for me despite my brain injury being life changing.
“Critical, typical frontal temporal damage, epilepsy diagnosis, career gone as a result, depression. My strategy for positive rehabilitation and recovery is hope, humour and positive thinking.”
The ‘new me’ theme is echoed by a number of our members, including Gerald Mack who commented: “My personality has changed a lot since my accident.
“In my thoughts, I died on that day in May 2009 and a similar but different person now walks in place of my original self.”
A number of people even make a permanent mark of the date.
“My husband got a tattoo showing cards that say ‘make your own luck’,” said Lauren Wright. “On his anniversary we tend to go out for tea and spend the day together. It isn’t a day of sorrow as he is still here to tell his story.”
Nicola Brown offers a similar perspective: “My tattoo says ‘What does not kill me only makes me stronger 18/12/07’. A new me means my life was totally changed (in a good way!).”
Life after brain injury
As we often say, with the right support, at the right time, there can be life after brain injury. Judging by the wide range of ways people acknowledge the anniversary of a brain injury, it’s clear that this is the case.
But while for many it is possible to see the injury in a positive light and move forward as ‘a new me’, for others it will always represent the start of a struggle to cope with the wide-ranging difficulties faced by brain injury survivors and their families.
We launch our A New Me campaign in May, and we’ll be looking forward to seeing what a brain injury means to the diverse range of people we support. We’ll leave it to Susan Wood to have the last word, with her inspirational quote showing how a negative struggle can be turned around.
“Devastated, life changing, relationship ruining or changing, loss of self. Early years was more about loss and anniversaries a little negative.
“15 years on a wife, mother and nana... I feel I’m the luckiest person I know.
“I like the ‘me’ I’ve become. I’m 62 and often have more energy than my peers. Bring it on!”
We recognise that every brain injury is unique and there is no one-size-fits-all approach to coping with the long-term effects of brain injury.
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