Tag Archives: brittle bone disease

I broke my spine, but became a wheelchair racer

Lizzie Williams is a full time student studying Sport, Health and Exercise Science. She has osteogenesis imperfecta (brittle bone disease) and is also a wheelchair racer and a T54 British Athlete.

She talked to us about her long journey to wheelchair racing and the expectations she has exceeded along the way.

The hydropool is sort of where my sporting journey began. Swimming in a pool was the only really physical activity I could do. As you are weightless in water, there’s obviously no pressure on your bones. I started that when I was really little.

I came back home and started training with a local group, got scouted for the ParalympicsGB team and was heading in the right direction for the London games but in 2012 I discovered that I had broken my back. Everything just sort of ground to a halt. I couldn’t do anything physical at all. My fracture wasn’t stable so I didn’t want to risk anything.

In 2013 I had the surgery on my back. After my surgery I was supposed to be in hospital for five days and they said I’d be walking out of there in a couple of weeks. I woke up from my surgery and I could barely move from the waist down. It went a bit tits-up I suppose you could say!

Having to learn everything again

I was in hospital for three and a half months learning to walk again. I couldn’t eat, I couldn’t drink, I couldn’t even go to the toilet. I had to learn all those things again. I had to learn how to sit up in bed, how to transfer to chairs, how to take steps. That moment was the lowest in my life.

I was in my second year in college at the time and it just put a spanner in the works for everything. As I’d spend so much time in a hospital environment, I’d always wanted to work as a nurse because I really appreciated everything that they’d done for me. I wanted to make a difference. It sounds really cliche but I wanted to give back.

After my surgery I realised I couldn’t do that. There was no way. I’d been at college studying things like sciences and health and social care. I wasn’t going to be able to do that anymore.

When I came out of hospital my sister was applying to university and I didn’t know what I was going to do or what options were available to me. At this point, I couldn’t get back into sport because I had to wait 12 months for the metal work in my spine to fuse to my bones. I decided that I was going to start the process again, go to a different college, do a different course and get the grades that I knew I could.

Lizzie Williams, a young disabled woman, races an adapted wheelchair on a race track
Photo courtesy of Peter Milsom

The journey to wheelchair racing

After the metal work fused I started getting back in the gym and doing physical activity again. I was volunteering at an event that had Steve Brown, who is a GB wheelchair rugby player. We were talking to some of the kids and he said he used to train down in Worthing for wheelchair racing and suggested I check it out.

I did the 100m in 25 seconds and the coach who was there was like ‘okay that’s pretty good’. Three weeks later I was entered into the London Westminster Mile and I came second. It’s just gone on from there really.

I don’t just want to be a great athlete, I want to be someone that people can look up to and I want to encourage people to get into sport because it is really great!

I can’t imagine what I would be doing without sport. I just love life. Every opportunity is a good one. It’s another chance to show the world that there may be wheels there but there are some pretty good things alongside them.

Lizzie Williams, a young disabled woman, races in an adapted wheelchair on a race track

We’ve published the findings of a new poll which asked disabled people whether the Paralympics can change attitudes to disability and asked what life is like if you’re disabled in 2016. Read more about these findings.

Visit the ParalympicsGB website for more information.

 

Featured image courtesy of Peter Milsom Photography

Deafness doesn’t have to be a disability – Abbi

30 under 30 logo

This story is part of 30 Under 30.

 

Abbi was born with a genetic bone disease called osteogenesis imperfecta, also known as ‘OI’ or brittle bones. Following learning BSL, she has set up a YouTube channel where she covers popular music in BSL.

As part of 30 Under 30, she talks about losing her hearing, how she started her YouTube channel and recalls surgery she had to regain her hearing.

Both my mum and I have OI which, aside from making our bones fragile and prone to fracture, has also led us to develop a plethora of related disorders. We both underwent scoliosis fusion surgery as teenagers, we both have arthritis and limited mobility (although my mum walks, I now use a wheelchair), and we both have otosclerosis, a degenerative hearing impairment.

I began wearing hearing aids around the age of eight. Within six years, my hearing had deteriorated to what’s classed as a ‘severe’ loss. I could no longer hear male voices at all, even with powerful hearing aids, and survived life in the hearing community through lipreading, guesswork and a bunch of magnificently patient friends. I was a huge fan of music and played several instruments, even though I had no hearing in the lower frequencies and could only understand lyrics if I saw them written down.

My mum grew up in a world where disguising her disabilities made life easier, so when it came to teenage rebellion, I embraced my disabilities as much as possible. I spent a lot of time learning about sign language, deaf history and the deaf community, and eventually signed up for BSL evening classes at a local school. I even convinced mum to come along, too!

Abbi, a young disabled woman, smiles as she sits in her wheechair

Songs and signing

To tie in with Adele performing at Glastonbury, Abbi has created a BSL cover of one of her most popular songs.

We had a wonderful BSL teacher, Jill Hipson, and after finishing our Level 1, Jill agreed to continue coaching me and a classmate through to Level 2.

As part of our study, Jill introduced us to sign song, which I instantly recognised as the perfect way to preserve the music I loved so much, even as my hearing continued to deteriorate. The first song I recorded – ‘Lucky’ by Britney Spears, of course – was clunky and awkward, but when I uploaded it to YouTube I received a huge amount of support, both from BSL users and from other learners like me. That was a huge source of encouragement to me, and a great way to broaden my understanding of the language.

I’d finally found a way to reconcile both my deaf and hearing worlds which, as a shy, anxious teenager in an increasingly unreliable body, was a massive boost to my confidence. My YouTube channel really took off just as my physical health declined. In hindsight, having such a positive experience of one disability really helped me in the transition to using a wheelchair full-time.

Since ‘Lucky’, I’ve recorded over 50 videos and gained 8,000 YouTube subscribers. I’m not fluent in BSL and I do make mistakes, especially as my hands don’t always work as well as I’d like, but the YouTube community has been incredibly supportive. Not only have I received lots of really helpful constructive criticism, I’ve also had some truly moving messages from both d/Deaf and hearing people all over the world and established genuine friendships. It’s incredible to think how the internet can facilitate such connections which, twenty years ago, would never have been possible.

An alternative way of experiencing the world

In 2011 and 2012, after much deliberation, I decided to undergo two risky but thankfully successful stapedectomy surgeries, which restored most of my hearing. Learning to hear again after ten years was fantastic, and actually fuelled my desire to keep recording sign songs – the more of the song I could hear, the more I wanted to sign!

I recently began to lose my hearing again. Despite having previously worn hearing aids every day for ten years, now that I’ve experienced the luxury of ‘real’ sound, I’ve found adjusting back to ‘hearing aid sound’ difficult. I wear my aids at work, but as soon as I leave the office, they go straight back into their box.

I consider myself incredibly privileged to have experienced both hearing and deafness; facing hearing loss as an adult, I’m taking my time figuring out what that means to me. Deafness doesn’t have to be a disability; for many, it’s simply an alternative way of experiencing the world. I hope my sign songs demonstrate how enriching and expressive that world can be.

Head to Abbi’s YouTube channel to watch more BSL covers of popular songs.

Abbi is sharing her story as part of 30 Under 30. We are releasing one story a day throughout June from disabled people under 30 who are doing extraordinary things. Keep up to date with all of our new stories on our 30 under 30 page.

“I want him to have the childhood that I never had”

In November 2013, Marie and her husband Dan became the proud parents of Mark via a surrogate. Marie has brittle bone disease and uses a wheelchair, so aspects of being a mum can be challenging. As Mother’s Day approaches, Marie tells us how Mark is growing up. 

Well, what can I say? Mark is now two years and three months old and we simply do not know where that time has gone.Mark plays with a sponge football

It’s a cliché to say ‘They grow up so fast’, but they really do! We are having so much fun and Mark has an amazing social life. He attends ‘Stay and Play’, ‘Mini Strikers’ and ‘Rugby Tots’ twice a week. ‘Rugby Tots’ has a Saturday session so daddy can come along too.

We have been out and about so much that I have recently had to have new tyres and motors on my powerchair. 1200 miles of mostly outdoor wheeling in a year will do that!

I’m enjoying everything about being a mum and I especially love being able to drive Mark to all his children centre activities in my adapted van. People stare and seem amazed when they see you are a disabled mum but when they see you driving your son around in a VW Caravelle with controls that look like they came from a games console, there are even more amazed looks!

I’m so grateful for the Motability scheme. The independence it gives me to enable me to take my son places like any other parent is what the scheme is all about.

He doesn’t see me any differently

Mark is getting even bigger and stronger and the challenges of being a small brittle mum are constantly changing. Mark (like any other adventurous toddler) likes to climb and jump so we need to be careful as there is a risk of him hurting me. Mark is now getting to the age where he understands that mummy could get hurt and so knows that daddy is who you go to for rough and tumble!

Mark running and smiling on the beach

I do really miss being able to physically pick him up but we still sit next to each other and cuddle on the sofa for story time before bed. We also love to hold hands and watch Peppa Pig together (Mark’s favourite!)

Now that Mark is walking and running independently, some things are a lot easier. He can walk over to me and climb up to my wheelchair when he wants a kiss or wants to see me. He’s even started passing me a cushion before I am about to climb onto the sofa as he knows I use one to transfer.

He doesn’t see me any differently. I’m just mum and he likes being helpful. He has an obsession at the moment with making sure daddy wears his slippers around the house!

Remembering my mum

Mother’s day is fast approaching and some days I still have to pinch myself to realise this is still real, that I’m a mum and we have a beautiful son. My only wish is that my own mother could have lived to see him. She sadly passed away a year before he was born but I’m proud to say she knew our plans and was as excited as we were. I know that she is looking down on us and I would like to use this blog to honour her and thank her for everything she did for me. Without her I wouldn’t be where I am now or have the knowledge I have to be a mum myself.

Marie with her mum

Hopes and fears for the future

Like any mum I have my fears and hopes for my child’s future. I think because of my own brittle bones I am always afraid of Mark getting hurt.

My biggest fear is him falling off a bike or out of a tree when he is older and him getting a fracture himself (even though he doesn’t share my condition). I fear this for him because I know how much it hurts and never want him to experience it! At the same time, I know I would be the best person to help him through it.

My hopes for his future are that he will always be happy. I want him to have the childhood that I never had. Already he does so much for a two year old I know that we will succeed in making his childhood the best it possibly can be. Every day he’s doing something from football to visiting the zoo. My other hope for him is that one day we will be blessed again with a second child so he can be a big brother.

Marie, Dan and Mark enjoy lunch at a restaurant by the sea

Scope’s online community has loads of tips for parents and families. Visit our tips pages and get involved.

This Mother’s Day is going to be tough

At three foot six and with brittle bone disease, raising a baby was always going to have its challenges. Last November Marie and her husband Dan became the proud parents of Mark, via a surrogate. As Mother’s Day approaches, guest-blogger Marie reflects that one of the hardest things is not having her own mum around.

Marie holding her baby
Marie with her baby Mark

This Mother’s Day is going to be tough. It will be really happy because it will be my first year of being a mum, but it will be difficult because my mum won’t be there. My mum died in October 2012, so this will only be my second Mother’s Day without her.

I think about my mum every single day. For some reason, when I am giving Mark his feed at about eight o’clock, I think about her the most. Mainly I think about how sad I am that she didn’t get to meet Mark and that she’s not here to experience what we’re experiencing.

Mark is growing every day, getting bigger every day. He’s doing more, like he started giggling in the last few weeks. It’s amazing, but there are two sides to it. At one end of the spectrum, I’m so happy because it’s our first baby, but at the other end, my mum’s not here to experience it.

I am glad that my mum knew what we were doing, that we were trying to have a baby. She was a bit worried at first about how we would cope physically, but when we explained that there would always be someone with me, she was fine.

She knew I just need a strong pair of arms to enable me to do things, because she was that strong pair of arms for so long. Now, my personal assistant and my husband Dan do the lifting for me: lifting Mark on to me, lifting him into his buggy, or lifting him from his cot. Once Mark is within my reach I can pretty much do most of the tasks for him on my own. But when something happens in life you naturally want to ring your mum and I can’t do that anymore.

It’s difficult, but now I just have to focus on being a mum to my little one and do what she used to do with me, with him. Sometimes when me and Dan bath him, if it’s a bit chilly, I put his clothes on the radiator to the warm them up and that’s something my mum used to do with me.

And if I’m ever feeling down, Mark is always there to pick me up. One of the best things is his smile. His eyes are so big and blue. As soon as I wake up in the morning I look over at him and he just smiles. And that just makes me happy all the time.

Marie is blogging about being a disabled mum for Scope, and has been raising awareness by talking to Sunday People