September 19th, today marks my 2-year anniversary. You hear the word anniversary and instantly you automatically assume it’s a good memory, it’s something people normally can’t wait to celebrate. Last year I started this journey, my journey of my recovery, unmasking how life really is with a brain injury.
There is not enough knowledge surrounding brain injuries, the more I spoke, the deeper I dug, the more I realised that the statistics surrounding brain injuries are huge. Yet im sat here battling, giving a voice to those that can’t talk or those that are suffering in silence, unware of the effects it has upon them and everyone around them. I’ve been giving my view; a view from my own eyes of the ups and the downs. I promised myself or shall I say I set a goal to raise awareness of TBI, I know im nowhere near to my goal but that’s ok and it’s ok because it’s my personal goal, one that no one can take away from me, I have no expectations, I have no time limits and I most certainly have no one to compare it too.
Two years for anyone that has suffered a traumatic brain injury (TBI) or an acquired brain injury (ABI) is a pretty big milestone. Why? Well every day is a pretty big step for me; very rarely will I make it through the day without having to have a sleep and writing those words plays heavy on my heart.
Early stages of a recovery with a trauma to the brain is sleep, it’s the best form of recovery, and it’s your body telling you it needs to rest/recover/heal. I didn’t think two years down the line would my fatigue still be such a huge side effect, its one that impacts my whole body, it controls how my speech is, how my legs are and a massive part of what kind of Zal I am.
The words two years, has been playing on my mind the last couple of months. Each day I’m closer to that day, closer to that two-year mark. You’re probably asking why it is such a big deal?
Everyone’s journey is different, I can still see my consultant at the end of my bed telling me in six months’ time I will be back doing this, back doing that and I learnt very quickly in the first year I was chasing for someone or something that was no longer there.
My words from my first blog “this is the new me” were that this time next year I will back doing this, back doing that, well I’ve had a massive reality check as even my smallest expectations haven’t come true, unfortunately there are NO time limits when recovering from a brain injury.
The research says it takes your brain two years to rewire from the damage caused after an injury, so does that mean this is now me? Am I meant to accept this is who I am now as it’s been two years, is this the finished product? I feel like I have so much further to travel in my recovery journey and that this is not the end but the more like a new beginning. I am not accepting my speech will be like this forever and I will taste again, even after completing the chilly test last week eating a spoonful of chillies and not tasting a thing. I still can’t give up, even if the chances of these senses returning are incredibly slim.
Im far away from who I once was, I’ve learnt that if im forever trying to be who I once was, how am I meant to move forward and accept the changes in the “new me.” I have days where I would do anything to be able to do the things that I use to do or feel how I once did, but im in the process of relearning and trying my hardest to learn to love who I am becoming. It’s the hardest battle for sure but it’s not one that I cannot easily give up on.
I want to be better, I want to get better, and I want more for me.
Looking back over my recovery period, there have been improvements, I can’t down play that down and I am so proud of how far I’ve come.
Rehab is still a battle for me. I undergo physiotherapy, occupational health, speech and language, dietician, neuropsychiatry and endless amounts of consultant appointments. It’s taken my all to get to where I am with my rehab. I massively struggle to open up, so to meet new people is a big deal for me; a big deal because where in the early stages of my recovery are not the best memories, having people mimic how I talk (even though it still happens to this day) makes me not want to speak to anyone, whether that is a therapist, another survivor or simply a new friend. It took me months and I mean months to finally be able to feel comfortable in the day unit I attend. This isn’t anyone’s fault but when certain staff do their rotations to different wards it gave me that feeling of going back to square one. It had a massive effect on me, I don’t handle change very well and to start over again is really hard. It is a constant battle of living in the reality of what is happening and having no control over what the next stage is, how you will be and where is the end of this long tunnel?
I will never forget my first review meeting with the hospital, around seven months after I was discharged. This meeting was where we spoke about how we moved forward, how the hospital was going to help with my rehabilitation. Seven months sounds like a long time in the “outside” world and for me it was, but there are other survivors that are lost in the system far longer than I was so I have to be thankful they came at a time I needed them the most. Sitting in a board room with my mum alongside me and having six therapists/doctors talking me through what had happened, what I was going through and how long the journey could potentially be; this moment will forever be imprinted into my mind. Hearing the words, seeing the reality of what had happened brought tears to my eyes. The tears that fell were because I was once made to believe that what I was feeling was in my head. Yet I had professionals sat in front of me telling me in black and white what the next steps were. Leaving that room I told my mum, this next process im going through will take me past Christmas 2016, it was June 2016 so my dream of returning to work like the consultant promised wasn’t going to happen that year. Here I am now in September 2017 still on the same rehab programme. It’s heart breaking because im learning that I have to rebuild a new Zal it’s like I have to reinvent her. When I wrote my first blog I believed I would be further forward than I am now. I cannot blame myself, or the consultant; there is no one to blame because there are no rulebooks for an individual’s recovery journey. The only thing that can help is time; it’s the same feeling as someone saying how long is a piece of string.
I have to give myself credit for how far and where I have come from, I think the hardest part in the whole situation is I am coming to terms with actually how hard it still is dealing with the ‘everyday’ and the impact it has on my wellbeing.
I’ve spoken very openly about the effects or defects I’ve faced within my recovery. I’ve managed to learn to live around a life that is still a massive jumble. I try and tell myself that looking back doesn’t take me forward which is completely honest, but the burning question is and maybe one that I think a lot of survivors suffer with is, “is there an end?” or do you just adjust to learning that certain things will never return or be the same.
My confidence has a massive dent in it, I know with time I will push and rebuild it, that is achievable, and that is a goal of mine and one that I will be able to turn around and say I’m more confident as who I am. I’ve accepted that I will never be able to taste, smell or even have the desire to want to eat. I’ve accepted that the side of my brain that had my motivation, creativeness or my enthusiasm in baking and cooking, is still numb and almost doesn’t exist however much I try to pretend that one day it will come back. The chronic headache I’ve had from day one is what I was told in the hospital is “a side effect I will be stuck with.” The fatigue I suffer with has a drastic effect on my moods and my body. My filter is none existent, I say things without meaning to and often comment without thinking of the affects my opinion has on others. My mum tells me im too open; im too honest and I wear my heart on my sleeve, which leaves me vulnerable. Vulnerable in a way that I don’t understand what emotions are and I over think every possible situation. I’ve learnt that in the last two years I really have to put myself first. All I ever wanted was my health to get better and I was worried choosing my health to be my number one priority would make me a bad person, the problem I have is that my health has to be my priority. I’ve learnt that people can’t understand or appreciate what im going through and that’s ok, but I can’t allow it to make me question that because my health and my life revolves around the “baggage” I have that I’ll never be good enough. I know deep down that I have a lot to give and I will always put others before myself. I’ve turned my negative situation into a positive and thrown my all into helping others. I think deep down I will always be that girl that just wants the perfect ending even if my baggage makes it tainted.
I’ve spoken about acceptance. What is acceptance? You accept the circumstance, the situation, it is what it is, and on one level you have no other choice. You hear a lot of survivors, I’m one of them that have said this to which I want to kick myself for, Hospital, Headway and brain injury awareness support groups say it:
“The sooner you accept the sooner you can move forward.”
Granted you learn a way to accept what’s happen, I’m not 100% sure how I managed it I think I learnt a way because I’ve detached myself from it. IT, wow that makes it sound almost unreal as though whatever it is, is no longer present yet I carry it around with me every second of every day. That part of me will forever be present and that is the scariest feeling of all, there is no escape.
When you look at me what do you see?
I’ll never be able to get anyone to understand the feeling of standing in your own body and it not feeling like your own. I’ve tried my hardest over the last two years to be able to fill that gap, to able to feel something that once felt like me. I suffer hugely with OCD due to my TBI, my obsession became that I needed to feel like who I once was. Whether that was buying endless amount of Mac makeup, having my hair done, buying a new outfit or the simple things like going out and seeing my friends. All this on the outside makes you think im just a normal girl living a normal life. Yes that’s exactly what I want, however that person you see who makes an effort to try and feel normal is constantly battling with people believing that it’s all an act that im not and I quote “disabled as she makes out” the only form of acting I can tell you I do is that I try and pretend I live a normal life. Should I care as much as I do with the comments from others? Probably not, but it’s massive when I feel like I can’t leave my house without the feeling of being watched.
The person they see on a photo on social media or if I were to date someone apparently the mould, the shell they see doesn’t add up to who I am/look like. I don’t think I’ll ever get past the fact that I look no different and people expect something unchanged. That’s not a bad thing and I shouldn’t be ungrateful because im so grateful, but to be judge by how I look is definitely up there with one of the most hurtful feelings I have. I know im vulnerable and more so now than I’ve ever been. Vulnerable because where I allow myself to try and move forward im often left with the feeling that maybe im not a full package, full package is that my head and my health is baggage, if that doesn’t scream to me that my confidence is knocked I don’t know what does?
I over think everything to a point I question if it’s even real? My anxiety is beyond control I can’t even tell you why I have anxiety, I can’t make a decision even down to answering my mum when she asks me if I want coffee or tea. The pressure of needing an answer there and then I cannot handle, the same with food, I’ve learnt that the people I can be around most of time have learnt to understand me better than I know myself, they simply don’t ask or they tell me even if my answer is no that I have to eat.
I want to be this carefree girl, I want to be the girl that was 100 miles an hour, working three jobs, being the creative, fun loving, outgoing one who would talk till the cows came home. Instead in social groups who are my friendship circles I have a text from one of my friends sat across from me telling me “Be you! Don’t be quiet, don’t let anyone change how you are” my reply “it’s so hard.”
It’s hard because my hearing is so sensitive, I can’t filter out the different conversations going on around me. To try and talk in amongst people I don’t know, or to even contribute to a conversation, getting my words out takes forever and a day. Worrying if my legs will be able to just get me through a night without pain or if my constant headache will ever give me a break.
I’m a girl so of course I want to make myself look nice and wear nice clothes or do my makeup but why should it come at a cost? It’s a no win situation, it’s a situation that has definitely knocked me to a point that I shut down.
What has time taught me?
That no matter how hard you try when it’s out of your control try not to expect a different result. For me, the last two years have been up and down and in my eyes its always two steps forward and five back but what I need to remind myself is that I am not where I was two years ago. I’ve learnt how to talk, whether that’s with a stammer or not it’s pretty remarkable how I’ve overcome that. Learning to walk however much pain I may be in, I got given that chance to be able to put one step in front of the other. My writing; I didn’t know how to spell my name or where I lived, yet this last year I’ve been able to openly talk about the ups and the downs and write this blog. I’d like to say I’ve managed to put a face to brain injuries and raise awareness in a small way, and I will continue to do so. Helping others has made my life so much more fulfilling than I could have ever wished for. I get to speak to people all over the world and help them understand their journey or that of a loved one. Granted I still struggle but knowing that you are alongside someone that understands your journey is a feeling like no other. I still get feedback from other TBI or ABI survivors and if it wasn’t for them helping me understand I wouldn’t be able to learn from my experience and pass that forward.
I don’t recognize my changes and my improvements as much as other around me say they do. The first three months there was a huge difference, leaving hospital was the hardest transition that even I didn’t understand. The baby steps I take now, however slow they may be its still pointing in the right direction. A year ago I could never have imagined I would be able to have the effect I have on others in helping them, and helping them has helped me massively. Could I have imagined myself organising a charity casino night for 120 people all to raise funds for a Headway Cardiff, definitely not. Through all the bad that the last two years has brought, it’s given me the courage and the strength so that those who have a TBI or an ABI have the best possible start they deserve along with their families.
I may have lost a lot in the process of having that awful accident two years ago today but it has given me so much more. I wouldn’t have met the friends that I have within Headway or even other friends that have suffered with a TBI or ABI. They’ve given me a lot of support and strength when I was struggling to keep my head above water.
I have an amazing support network with my family and extended family even more so than I’ve ever had. My relationships with my brothers have always been special but I think when you are faced with a life changing event you really realise just how important family is. This month I got to become an Auntie to my first nephew who has stolen my heart, I can look forward to this month coming as I get to watch him grow instead of thinking of what happened to me.
They always say you know who your friends are when you need them the most. I can whole heartily put my hand on my heart and know who are there for me. Writing this I’ve been on the brink of tears, but within one phone call I know I have someone at the end of the phone helping me process, understand and take in what im going through. I know im hard work, I stress a lot and I have awful mood swings but I think im pretty lucky to be able to have friends that understand me more than I know myself.
Leaving hospital I got given some news that I never knew would change my life as much as it has. I’ve always called this one person the sister I never had, her family became my adopted family and has always treated like their own. I was handed a photo the day I left hospital that had the words “The best friends get promoted to Auntie.” I had already been lucky enough to experience best friends having babies and becoming an auntie, but secretly I think this one little man walked into my life and ran away with my heart. He’s the closest feeling I’ve had since the accident that fills me with warmth and unconditional love. May 14th 2017, after his first birthday I became his godmother and he became my best friend/godson. I cannot thank his two amazing parents for giving me the chance being a part of his life and bringing such joy into mine, he has definitely made the last 16months more meaningful than I could have imagined.
High rolling for Headway.
I set myself a goal last year to start this blog and help other survivors in a world that doesn’t feel like their own. The experiences I faced and still do on a daily basis needed to have a voice to show that not all disabilities are visible. I had hit a low point through my journey and battling to push forward I discovered writing “one day, one step at a time” could really help me.
I’ve been overwhelmed with the response I’ve received from my posts, the encouragement and support has been out of this world. I’m so grateful for everyone’s support and knowing that even my friends within the “brain injury survivors” group say that Im speaking out for them as well, this is just another reason to keep going knowing that im not the only one that feels the way I do. Starting 2017 with a new slate, no expectations and a chance to start new gave me an even bigger reason to want to help others. This time it was to give back to the charity that made all this possible “Headway Cardiff & South East Wales”
I decided that I was going to make my Two-year anniversary into something more than tears and instead an opportunity to celebrate how far I’ve come. I took it upon myself to create and organise an event called “High rolling for Headway” a charity casino night, a reason for people to dress up, enjoy an evening out and have a cheeky bet with fake money, and all donations made throughout the night to go back to Headway.
Anyone is welcome to the evening, the event is taking place on Saturday 30th September 2017, 7pm-1am at the Glamorganshire Golf Club, Lavernock Road.
Tickets are only £25 and this includes a welcome drink, a bet in the casino and a light bite. All proceeds will go to Headway and there will the opportunity to win some incredible prizes at the raffle on the night. Please come down and enjoy a fun filled evening all for a great cause.
For your chance to be a part of this incredible night that I’ve put my all into tickets are available Here.
I know now that anything can happen, expectations change and so do your goals. One thing is certain for me and that is whether my journey is up and down, I will always be thankful for having that chance to grow and continue with my rehab. My goal is simple and that is if I can help a survivor or a family feel a little bit better in knowing that they are not on their own, then I know that the ups and downs are all worthwhile. I can’t wait to see what this next year will bring whether its small or big steps anything is possible. Here’s to September 19th 2018…