March is ‘National Brain Injury awareness month’, If only it was that simple to raise awareness by just saying those exact words.
Every day on average 956 people in the UK suffer from an ABI, 445 people suffer from a head injury and 358 suffer from a stroke, that’s 1,759 people daily suffering a life changing injury. These statics are based on UK admissions from 2013-2014 and are higher this year than it was 3-4 years ago. I am just one person suffering from a traumatic brain injury that happened 18months ago, yet people are unaware of how debilitating a brain injury can be? WHY?
Is it because its part of your body that no one can see so therefore it doesn’t exists? Or is that people don’t want to try and understand just how hard it can be? I would love to say people are more sympathetic when your disabilities are more noticeable but I don’t believe that to be true. In my case you cannot see the brain damage that’s been caused by my accident but you can definitely hear it when I talk, or see it when I’m using my stick but yet again people still believe that I put that on.
I’m sorry I mention my speech a lot in my posts, but it’s such a huge part of who I am now, in the video below this is how I woke up in HDU, not able to form a single word, so for me being able to actually speak is an unbelievable achievement.
(This video is three separate video’s filmed on different days in the early stages of my injury, while i was still in Ireland before being air ambulance home.)
I’ll never forget my first word and my first step after the accident, just like I’ll never forget the people that inspired me to help me try to understand what had happened, or even try to get better. I think that’s important in trying to reach my main goal in realising where I was to where I am now. The hardest part in it all is accepting that as much as you want to be who you were, you can’t get back to that person/or that place.
Every day is a massive achievement for me, waking up knowing I haven’t had a seizure is a huge relief as I live on my own. I worry none stop about my head, waking up after blackouts on the floor or nearly falling down my stairs. So for me knowing that I’ve made each day is amazing. It’s just heart breaking that I have to justify why I want to try and live a normal life as much as I possibly can.
My speech has been my down fall, as you will see later on, I have come a long way, but there are good and bad days, where sometimes it’s worse than others but that’s understandable, or it should be understandable when fatigue plays such a large part in my injury defects. The only time it has ever been acceptable for someone to comment on how I talk is when a child has asked why I talk the way I do, one asked if it was my accent and that I reminded them of a sheep which I have to say, I laughed at; she was so innocent at 5/6 years old im ok with that. It’s when it happens by adults face to face and they laugh at me, that’s when my confidence goes and I honestly don’t know what more I can do to change how people react?
I was recently asked to do a talk at a ‘Headway supporter’s event’. The event was held to show how effective the charity has been for survivors and how important it is for the ongoing support and donations that Headway, so badly need to help rebuild survivors and family member’s lives.
When I was asked if I would be able to talk about my journey my immediate reaction was wow they’ve asked me, I would be honoured to be able to give something back to a charity that honestly has my whole heart. It didn’t actually cross my mind that I actually had to talk in front of 40 plus people. I don’t process information very well since the accident, it only crossed my mind what I was doing about 10 minutes before the actual speech.
Let me take you back to where Headway became my rock.
I first heard of headway while I was at Rookwood hospital, and in all honesty back then I had only just learnt I had a brain injury. I could barely move my legs and my speech was poor, I don’t know exactly what stage I was at in my recovery, I just vaguely remember having one of the Headway staff handing me a card and telling me when I was ready I could contact them.
The transition from hospital to home, was one of the hardest moments of my recovery, there are no words for the pain and struggle. My world fell apart at my feet and I had lost so much in a small amount of time, coupled with the frustration of not understanding who I was, how alone I felt and the thought of things never getting better, bought me to an all-time low, I found the Headway information card and rang in tears the words fell out “I need help with my head”
I’ll never forget that day I went to their office, where someone told me what I was feeling was normal, I wasn’t on my own and that there is help for me.
The only time I’ve really cried about my accident is when I learnt I couldn’t talk and when I knew I wasn’t me anymore. My mum is probably the only person I’ve really let go my frustrations about my accident too, she was the only one that accepted that I was different from day one.
My first meeting with the social group for Headway was at Chapter, I couldn’t say one word let alone look up, the tears fell down my cheeks because before that meeting, I was made to feel like I had made my injury up, I was suffering alone and that all I needed to do was pull myself together. If only it was that simple. Yet now I was sat in a room full of other TBI or ABI survivors and it was the realisation that no this is actually who I am now.
That day I met my Headway Family will forever be in my heart. My Headway mum Judith (we all call her our mum in the group that we have) took me under her wing and she has ever since made me feel safe. Judith suffered an ABI in September 2012, she’s an amazing women, with an amazing family around her and because of her that day helping me overcome a massive step headway become my safe place and I’ve never looked back since. she still is my rock and with everything she has going on in her little world she will always be the first person to make sure im OK. (as you will she her coming to help me in my video below)
Headway has given me something no one can ever take away from me, they understood my injury and helped me rebuild my life around this “new me”. The support they give families and survivors is just unbelievable, I will forever be grateful to them. That’s why my goal this year along with my blog was to help give back to headway and set up my fundraising page.
Here is the speech I made at The Headway supporters group on Saturday 11th March, I can’t express enough how hard it is for me to have been able to do this speech, let alone talk in front of people. I struggle massively talking to new individuals, I think that’s due to my confidence and also where I’ve caused damage to my frontal lobe, I don’t have the spontaneity in interacting with new groups I become withdrawn and it’s so difficult for me to overcome. So the courage to have done this and post it, to share so people understand from my point of view is huge for me.
“It takes me a lot of courage to be able to talk, it takes my all to voice my opinion but if it wasn’t for headway I wouldn’t be here today to be able to talk to you about my experience.
September 19th 2015 my life changed in a blink of an eye, I fell down 8 steps, I sustained a fractured skull and a number of bleeds on my brain. I woke up unaware of what happened, unaware I couldn’t talk, walk, read or write.
My life as I knew it, changed forever.
I look no different to who I was before The Accident, the person I was, isn’t the person I am today. I’ve had to relearn who I am, accept who I’ve become & headway gave me that life line when I felt I had nothing left.
They gave me a family, a family of friends that understand how every day is a struggle.
I get judged by how I look & mimicked daily by how I talk, I want to say by now I’m used to it, but every time it happens it destroys me a little bit more.
My Brain injury doesn’t just affect me, it affects my whole family and the support I’ve been given by headway has made me accept and adjust to my new normal.
If it wasn’t for the support from them I wouldn’t be here today.
People assume that because I’m trying to live a ‘normal’ life, that I’m better or that i no longer suffer, I wish that was true.
I’ve had to stay strong and accept that this is how it’s going to be. I’m able to come to terms with this & deal with the situation due to the friends I’ve made at Headway and the strength they’ve given me.
I left hospital with very little help and had to try and adjust to a life that I didn’t recognize. Not being able to understand who you are in your own body, well there are no words for that. I would look in the mirror and the person staring back wasn’t someone I knew anything about.
My marriage ended and I lost my Bampy after he had a stroke, my world literally fell apart.
This is where after feeling scared, lost and that I couldn’t go on, I made that call to Headway.
My words were simply… “I need help with my head”
They came to my rescue & slowly supported me through rebuilding a new life, a new version of Zal, I will be eternally grateful for their support.”
I’ve uploaded the video as well, it was a massive achievement to be able to stand up in front of an audience to speak about my journey, I always get emotional with my Bampy so im sorry about the tears. As you can see from my first video to now, my speech has massively improved and im proud of that. I still struggle massively with word finding and delayed reactions in my speech but that’s understandable considering the bleed was over my Temporal lobe.
I started this blog to help others, I want to say I started accepting whom I was because I met others in the same situation but I actually don’t believe that. I accepted the accident because the more I was fighting against it and telling myself I was returning to a life that no longer exists, this made my recovery impossible. I accepted it when I heard other TBI survivors and the hospital tell me that when you learn to grieve the old you, you start to accept the new you. How do you learn to grieve when it’s what you want so badly and something you know so well? Have you heard of that saying listen to your body? Well my body shuts down. I sometimes shock myself.
I recently had my first holiday since my accident with my mum, my two younger brothers and I flew to Australia to visit my family. I sound like im ungrateful saying this but my emotions are stunted and I don’t feel anything. People would ask how I felt about going over and I obviously couldn’t wait to see my family, but I was so worried about my head, my legs, and my moods. I didn’t know how my family would cope with me. I was scared they wouldn’t like who I am now, how my fatigue gets me, how I can’t eat, how I seem like I don’t care but it’s because I physically can’t make a decision and process things. I would have been happy staying home, sticking to my hospital visits, my rehab and knowing my routine, but in all honesty it was the best therapy I could have ever had.
I can’t describe to you the pain I was in with my legs and my head, but spending time with my family after everything we’ve all been through was worth the every bit of pain I had. I didn’t realise how my recovery and the other stresses in life have been taking a massive toll on my body, to be able to relax and be looked after with my family and not worry how or what people thought of me was amazing.
Its time like these that really makes you realise who and what actually matters to you, the support my family give me honestly is unbelievable.
I can’t describe to you what it’s like when my legs don’t want to work, my brain literally stops talking to my body and the pain and fatigue my legs and body goes through is out of this world. It’s hard for anyone to understand, I get that, I get that people see a photo of me smiling or sat at a table with friends or going to the shop, you know what normal people do, but when it comes to me I’m a 28year old trying my hardest to just be a 28year old.
On holiday my 16year old brother literally had to hold me up to walk me to the car and put me to bed, my body stopped working and just shut down. The unconditional love I have from my family to support me there are no words, same with my friends. My brain fatigue is always going to be an issue due to the scaring it’s just how I adjust to it. I’ve come such a long way and im proud of that. I didn’t overdo it on holiday, I had my stick with me everywhere I went and a wheel chair when needed. But for once it was so nice not to have to think about my rehab and I realised I so badly needed that time for my family and me to be together.
A year ago, everything was different and I now look back, I realise how strong I have been, how I was able to get through some difficult times, how I always kept putting one foot in front of another even though I felt broken at times. I realised that a year can do a lot to a person, but im here, im stronger than I was before and im still going to keep putting that one step in front of the other. The reason I choose to stand up and speak openly about it, Is because whether it’s my injury or mental health, it’s an invisible injury and that some days are better than others. If I were to show you me on my bad days you would see how much I struggle but I choose to show a positive route and that whether times are hard, I will still keep fighting.
Last week I had felt I had hit a dead end. I was sat in hospital with one of my therapist and the realisation that this could be the best I can be. Broke my heart. I’ll never be 100% better there’s no such thing, but every time I hear that statement it still hurts. I think it’s always going to hurt, so to come face to face with a realty that this might be me now forever scared me. It was only when my friend told me that look how far I’ve come and my mum reassuring me that I will be ok.
It’s always going to be hard, it’s going to be long journey but I have accepted that or I try and tell myself that I’ve accepted that. I know I’ve accepted the situation that I am in and that’s just like anything you do in life, your new routine becomes your ordinary routine. So for me, the headaches, the appointments, the rehab everything is my new routine so it’s my normal.
I will forever miss who I was and I know people will never truly understand how I feel, but im trying my hardest to become a better person. A new version of me and for that reason im literally standing up for myself and showing others that its ok to still try and enjoy life whatever that may be, but surround yourself with positive people and you will always become a better person for that!!
My stammer and i will love you and leave you until next time….
Always keep smiling xx