Simon and Becky

HiddenInMe is the debut book release from Simon Commins (30) and Becki Cobb (28). Two young stroke survivors who want to share their story about hidden disabilities.

They started to write about their experience of brain injuries just one year after they first met. In the book, they share the ups and downs of life before, during, and after stroke, with the aim to encourage others, and reassure them that a stroke may just be the start of a brighter future.

Below they share part of their story as part of our A New Me campaign.

Please tell us a little bit about your life before you sustained your stroke.

Becki: I was in my final year of university and desperately looking forward to graduating to start my career. I had a very active social life and a part-time job in a clothes shop. I was always quite determined and wanted to work in media, but I never dreamt I would self-publish a book one day.

Simon: When I was younger I never knew much about stroke. The only possible connection to stroke I had was my daily nosebleeds. But how would I have connected the two together? It wasn't until I had a stroke and found out what was causing my nosebleeds could of had a part to play. Until my stroke happened I was full of energy, fit and healthy, happy, trying to start a career in college and only 17.

Why did you choose to write a book?

Becki: We had been thinking of different ways we could use our experience to help others. For a while I thought a book was out of our reach, but we looked into self-publishing and decided to write our first draft, we weren’t sure if anything would come of it, but after three years we were happy with the manuscript and sent it off to the printers.

Simon: We wanted to do it for a number of reasons. Having all of the memories of the stroke could be lost over time. Having a timeline written down would be a way to remember some of the positive and negative outcomes as a result of it. Helping people came hand in hand with this. Releasing our experiences as a book could help those who don't know how to deal with the challenges of life after stroke. Plus, I wanted to do something I would have never thought of doing before my stroke.

Do you feel like a new person after your stroke?

Becki: In some ways I do, for me there are the obviously physical changes. Limited mobility, high muscle tone, foot drop etc. but I think overall it’s made me a much more understanding and patient person. Perhaps even kinder too.

Simon: I have actually been able to distinguish the difference between the person before and after my stroke. In some respects, I have become more care free, but at times I can also feel worried about what might come next. Having a genetic condition called Hereditary Hemorrhagic Telangiectasia (HHT) makes me worry that more arteriovenous malformations may be developing in my brain.

Do you feel you've changed/do other people feel you've changed?

Becki: I think both our strokes happened at a time in our lives when you are going through so many changes anyway, so I find it hard to know sometimes if it’s the stroke that changed me or just ‘growing up’. Maybe a bit of both. There are a lot of things I can’t do because of my disabilities, but I think the biggest change is that I no longer feel invincible. I’m a lot more cautious than I ever have been before.

Simon: I guess I have always been one who isn’t bothered about other peoples opinions of me. For most of my life I have done my own thing regardless of what others think. I never wanted to be conditioned by anything before my stroke. I guess I wanted to be free from the crowd. However, it wasn't until my stroke when I realised I wanted to ‘fit in’ more like everyone else. I became more determined to be educated and prove brain injury can mean a new life of opportunity and freedom too.

How has the stroke impacted aspects of your life? (social life, employment, home life?)

Becki: Initially it felt like a big negative. I had to learn how to walk again, I still can’t wear pretty shoes and I’m almost constantly tired. But now that I’ve met Simon I wouldn’t change it for the world. We both had the same determination to get on with life and almost seven years on I honestly think my life is as good (if not better) than it ever was before.

Simon: I remember back in 2004 when I had no-one to relate to about my stroke, or in fact HHT. I remember just seeing everyone else getting on with their lives and growing up. I question now if I should have ever believed I needed to prove I could ‘be somebody’, after my stroke. It’s ok not to want to ‘be somebody’ too. I guess, if you want to be somebody else then you are not being you. My brain injury caused cognitive hidden disabilities, which I have not always been able to openly express to others. Sometimes, people don't understand my difficulties because they can’t see them.

Has it affected your relationships? 

Becki: We talk about this in some detail in HiddenInMe. For me it brought my family closer together, but there were definitely some friendships that were affected. I think it was hard for some to understand that being discharged from hospital didn’t automatically mean I was ‘better’. I’m still recovering 6 years on! 

Simon: My experience of brain injury has been quite self centred to some extent. I have been trying so hard to get myself out of the situation, that at times, I have forgotten the impact it may of had for others. I guess the collateral damage of a brain injury is not always seen straight away until you observe yourself and what is going on around you. The observation has taken a while for me, but I am starting to get there.

Do people treat you differently?

Becki: They definitely did when it first happened, especially when I was in a wheelchair. I remember once being in a shop and the assistant speaking over my head to my Mum even though I was the one asking the questions! More recently though, I find that as I’ve recovered more and more I’m not treated differently at all. This can be hard too because it’s harder to get people to understand what I’ve been through. I walk with a slight limp and can’t use my left hand, but you perhaps wouldn’t know that if you were to look at me. I never get offered a seat on public transport (even though I often need it), and if I sit in a priority seat its not uncommon for people to give me the ‘you shouldn’t be sitting there’ glare.

Simon: I don’t believe people do treat me any differently. At times that has been the problem. Other than showing people one of my brain scans, others find it hard to identify my disabilities on first inspection. Practically, I can’t forever walk around with a picture of my brain scan pinned to my face, so there does need to be something out there for others to recognise that some people silently struggle. That is what HiddenInMe is all about. It’s not all about hidden struggles, but uncovering hidden potential.

Has your outlook on life changed?

Becki: Definitely. I try to make the most of every moment, and we want to use our experiences to help others going through tough times. That’s the main reason we wrote HiddenInMe.

Simon: I realise now that I am writing this piece nearly 13 years since my stroke. I have of course had further treatment for AVM’s since then, but I try to not let things hold me back from living. By that I mean: Enjoying a simple life as much as possible.

Have aspects of your personality changed? (self esteem, confidence, independence, happiness)

Becki: I think I’m much more anxious and a little less confident. I never used to worry about anything. I think that’s because everything is that little bit harder for me now so I worry about what could go wrong. At the same time though I’m happier than I have ever been.

Simon: To begin with, my personality had changed as I didn't know who I was, or anyone else initially following my stroke. I was quite aggressive at times, but I put some of that down to frustration of being in a position that I initially didn't intend to be in. My confidence has changed. I sometimes see basic tasks more complicated than they really are. I need time to get it right in my own head even if things are explained. This can affect my confidence to a degree as colleagues my judge my ability based on a very short period of time. This doest stop me trying again and again until I get things right. I would say I have resilience which I never knew I did before.

Do you feel like people in your life understand the impact of your stroke? Would your life be better if they did understand it?

Becki: I think most of the people who were in my life when it happened understand the impact it had on me. It’s harder for people I’ve met since my stroke. Not everyone understands what a stroke is, or what it means for a young person whose had one. They might recognise it as an illness but as they affect everyone so differently it’s hard for them to fully understand the impact it’s had. Particularly when your disabilities are quite hidden. Simon and I have been together for more than four years, and since my friends and family have read HiddenInMe they’ve all said that they have learnt so much more about how Simon was affected - and these are people who have been impacted by stroke themselves. I think brain injuries are so complex that it can be hard to understand the impact it has on each individual. 

Simon: I don't usually have people in my life that don't understand the impact of my stroke. Or at least, I stick to those who are willing to appreciate more about what it’s like to live with a hidden disability. More awareness is needed for the general public to reduce prejudice towards hidden disabilities. It would help for everyone to be aware of what they are. I do believe everyone in general need to be a lot more open about their own impacts of stroke, or other disabilities. That’s one of the reasons why Becki and I wrote HiddenInMe to show others how we struggled, but made it through.

Do you acknowledge the anniversary of your stroke? If so what do you do?

Becki: Simon and I met just before the second anniversary of my stroke. When I told him, he insisted he took me and some friends out for dinner to celebrate. If he hadn’t done that we might not be where we are today. Since then we try to do something little, go out for a nice dinner or go away for the weekend. We always give each other a card too.

Simon: My dad always sends me a text on the day of my anniversary. So many things related to HHT have happened on that date since then that it has also been difficult not to remember it. Myself and Becki make sure it is more of a celebration than a sad day. After all, we wouldn't have met if not.

Have you struggled to acknowledge your stroke? and the affects it's had? Have you come to accept it more over time?

Becki: I think I accepted my stroke quite early on, but I didn’t fully understand the impact of it until I left hospital. There are always times when you think you’ve accepted it and then you are reminded of something else you can’t do and it brings back those emotions again.

Simon: Having a visual defect meant I recognised the physical impact of my stroke pretty much immediately once I was conscious enough to understand. It wasn't until I began day to day reading when I realised the hidden aspect of my disabilities, which took longer to realise. For me it has been a case of living to expect not living to accept.

Do you feel positive about the future?

Becki: Yes, definitely! I’ve got an amazing understanding boyfriend, we are both doing well in our careers, and we’ve just released a completely self-published book about our experiences. I couldn’t ask for anything better. After my stroke I never dreamt that I could be where I am now.

Simon: Having something so significant happen to me at a young age could have made me feel one or two ways; 1. I could have felt like the only person to have bad things happen to them. 2. It could have made me feel like I could do anything I wanted because I had nothing to lose. I feel positive for the future because I know, no matter what I try to achieve; any outcome is more than I had ever expected.

What advice would you give other young people who have suffered a stroke?

Becki: My advice would be to keep fighting, there will be ups and downs.

Simon: Experiencing a life changing event such as a stroke could help you to understand more about yourself. It could close some doors, but open others. Ultimately, it could certainly change your life, so that should be expected. Coming to terms with that change can be the hardest part. For myself it was then about how well I could use the skills I had left to my advantage.

Have you received help from Headway? If so please can you give details about the help you received?

Becki: I’ve used the Headway website information pages and have watched many of the videos on the website but sadly I didn’t come across Headway until quite far into my recovery. Since discovering Headway the website has helped me to understand the different types of brain injuries in more detail.

Simon: At the time I had my brain injury some of the charities were in their infancy, and not as far reaching as they are today. There was very little on the internet either. Other than the support I received from an NHS outpatients group; my support links ended there unfortunately.

Buy HiddenInMe

You can find out more about Becki and Simon's work to raise awareness of stroke and buy the book at www.hiddeninme.com