Scoliosis | Why I Chose NOT To Have A Spinal Fusion

In my latest piece for Muscular Dystrophy Trailblazers, I explain how and why I chose NOT to have a spinal fusion.

My Experience

Aged four, I received a general diagnosis of congenital muscular dystrophy. Many years later, this was specified as Ullrich congenital muscular dystrophy.

Aged nine, I was offered corrective scoliosis surgery.

At the time, I had no idea why I was going to see this new doctor. To me, it was just another appointment.

There was no faffing around; this guy was straight to the point!

He firmly asserted that I needed an operation to prevent further decline of my spinal curvature.

I was horrified to hear of the graphic details, lengthy recovery period, and how it could even prove fatal.

Bear in mind, we’re going back more than 20 years – the whole procedure was very different to what it is today.

Of course, as an adult I now appreciate that with any surgical procedure, doctors are obliged to inform the patient of every potential risk and outcome, including death. But this was pretty shocking and unexpected news to take in at a young age.

How I Made My Decision

As a child, I attended annual outpatient appointments at Birmingham Heartlands Hospital, where I saw a paediatric neuromuscular Consultant.

My parents and I were never given a prognosis, nor any indication regarding if or how my condition might progress. Life expectancy was never discussed and no doctor could tell if I would, in time, come to rely on a wheelchair. We were very much in the dark, living day-to-day.

Frankly, these appointments frustrated and bored me to tears! We would wait hours to see the doctor, and leave knowing nothing more than we did before.

I have, in all honesty, learnt infinitely more as an adult through my own research and from others living with muscular dystrophy.

My point here is that my parents and I had nothing on which to base our decision. Or rather, my decision.

It is now more than 20 years since I was told I needed a spinal fusion. This was pre-Google and pre-social media.

We weren’t put in contact with anyone who had experienced the operation. So, other than a brief verbal overview from the Consultant, we had no other information or point of reference.

After leaving the appointment in a state of shock, my parents told me that ultimately the choice was mine. I decided I didn’t want to put myself through such an ordeal. I was, at that age, considerably more able than I am now, and none of us had any reason to think I would deteriorate as severely as I have.

Do I Regret My Decision?

At the time, it was, or at least seemed the right decision. I was able to weight-bear, finding clothes wasn’t an issue, I was pain-free, and did not require any inhalers, medication or respiratory support.

The procedure back then was much more invasive, and the recovery extremely lengthy compared to what it is today.

My condition was stable, I was happy and relatively able. Under those circumstances, the disadvantages outweighed the potential advantages.

However, I do often wonder how different my life, body and health might be had I said yes to a spinal fusion.

No one predicted that just a year after the offer was made, aged 10, I would become completely non-ambulant within a very short space of time. Had I any indication that this might occur, my decision may have been different.

Though my scoliosis was considerable, the ‘S’ shaped curve is now much greater. Consequently, my respiratory function is significantly affected and basic comfort is a distant memory.

On bad days, when I’m in pain and struggling for breath, or when I’m ill for months (yes, months) with respiratory infections; I do regret forgoing my one opportunity to correct my skeletal deformity.

But, what’s done is done, and cannot be undone. I’m stuck with me! I can’t change past decisions. I simply have to make the best of what I have and keep moving forward.

I’d love to hear about your experiences with scoliosis and spinal surgery.

– Have you turned down corrective surgery?

– Have you had a spinal fusion? If so, how has your life changed as a result? Is it better or worse?

1 Year Old Today! | Blogiversary

It’s now been one year since my blog, Life on the Slow Lane, was created. I finally bit the bullet on 5th October, with my first (proper!) post going live on 11th October.

As you can see from that first shabby entry, back then I lacked a specific objective. I just wanted to get going after contemplating blogging for many months prior.

Over time I have (I hope) managed to focus the aims and purpose of my blog.

I now concentrate primarily on disability issues, specifically those relating to muscular dystrophy. Here I share my thoughts and experiences, having lived my entire life with Ullrich congenital muscular dystrophy.

Blogging opportunities

Over the past twelve months, I have been extremely fortunate to write for other notable publications including Muscular Dystrophy Trailblazers, Disability Horizons and Limitless Travel.

Life on the Slow Lane has enabled me to interact with many other disability bloggers. The amazing Simply Emma generously invited me to guest-blog for her, which I did in May and July. Then more recently I collaborated with the lovely Gemma over at Wheelescapades.

My blogging highlight of the year

A particular highlight for me was the overwhelming response I received for the piece I wrote about my life with UCMD. The fact that it is an especially personal and exposing piece makes the positive feedback all the more touching. To date, this, my most popular blog-post has been viewed over 11,700 times.

Final thoughts

Admittedly, it’s been challenging and time-consuming. I have so many thoughts and ideas, yet not enough time to execute them all.

I often feel like I’m playing catch-up, mistakenly comparing myself to other much more established disability bloggers.

I’m not a big fan of computers and otherwise avoid them if at all possible. Initially, I had no clue how to even set up a blog, let alone edit and customise one.

I realise many of my peers are adept with design software, graphics and managing websites. But I’m just not. Computers are in no way of any interest to me. I’m old school! So this, along with social media, is something I have had to familiarise myself with.

Blogging goals for the next year

• Continue to upload regular posts
• Reach a wider audience and increase my readership
• Raise awareness of Ullrich congenital muscular dystrophy
• Meet other like-minded disability bloggers

Thanks to you

I’d like to thank each and every person out there who has read any of my articles. I truly appreciate your feedback and support!

As long as Life on the Slow Lane attracts an audience, however small, I will continue to write.

Hoists in Hotels | MDUK Trailblazers

Last month Muscular Dystrophy Trailblazers launched their report following an investigation into the need for hoists in UK hotels.

Over 100 Trailblazers responded to the survey, sharing both positive and negative experiences.

This is an important issue that affects the lives of so many disabled people, myself included. Without the essential facility of a ceiling hoist, we are denied the opportunity to travel, whether for work or leisure purposes.

With only 18 UK hotels having installed ceiling hoists for disabled guests, this is clearly an overlooked and ill-considered feature. Who is designing these ‘accessible’ hotel rooms, anyway?!

I was one of the respondents to the Trailblazers survey. Here is my view:

“I am an infrequent traveller, not because I lack the desire but because it is so difficult to find appropriately adapted and affordable hotels. Even getting away for a single night is an almost impossible challenge, since hotel rooms are, disappointingly, not equipped with ceiling track hoists as standard.

Although some people get around this problem by hiring (at an extra cost) or taking with them a portable hoist, this is not practical for all. Portable hoists are cumbersome, difficult to store, transport and manoeuvre. Furthermore, many people simply don’t have access to a vehicle large enough to carry such large-scale equipment.   

I have Ullrich congenital muscular dystrophy and am completely non-ambulant. I can’t safely transfer and so I either have to be hoisted or manually lifted. Understandably most people, excluding family, are reluctant to do the latter. So, if I want or need to get away from home, my only current option is to ask family members if they are willing to lend their time and support (far from ideal).

With less than 20 hotels in the UK equipped with ceiling track hoists, our options are severely limited. For those of us who need this facility, a premium cost is incurred, and then we are restricted to specific locations. Sadly we are not free as others are, to occupy any hotel room in a hotel of our choice, anywhere in the country.”

Click here to find out more information and from other contributors.

Get To Know Me | Interviewed by Wheelescapades

I recently collaborated with fellow disability and lifestyle blogger Gemma Orton, aka Wheelescapades, on a ‘20 Questions‘ blog post.

We initially got chatting on social media and found we had a few things in common ~ We’re both arty/crafty types, we have a mutual love for all things Disney, and we are both wheelchair users. Gemma has Spinal Muscular Atrophy Type 2 (SMA2), while I have Ullrich congenital muscular dystrophy.

To get to know each other even better, we gave each other free rein to ask 20 personal questions!

Here you can find my previous post, in which I interview Gemma.

And below are my answers to Gemma’s 20 questions…

1. What made you decide to write a blog?

I had been thinking about it for a long time, though it took me several months to begin. I wanted to do something productive and worthwhile but didn’t think anyone would care or be interested in what I have to say.
They say you should write what you know. I have been disabled since birth and so consider this my expert subject. However, disability isn’t a particularly popular or fashionable topic to blog about. I knew it would be a challenge and it has been. I do feel like I’m constantly playing catch-up and at times I wonder if it’s worth the time and effort. But when I receive positive responses from complete strangers, I am reminded why I’m doing it.

2. What do you want your blog to achieve?

I want to raise awareness of muscular dystrophy, particularly Ullrich congenital muscular dystrophy which is the rare and little-known form that I have. I want to share my thoughts and experiences, having lived my whole life as a physically disabled individual, in the hope that it may in some way help others.

3. What is the most difficult thing for you about having a disability?

Blimey, I could write a list! There are many challenges and frustrations. My condition is progressive and so the difficulties become greater with age. I think perhaps, for me, the most difficult thing about living with Ullrich congenital muscular dystrophy, is the limitations it inflicts. I am limited physically – I cannot run, dance, walk or even weight-bear. Just to be able to stand and support my own weight would make a world of difference! I am life-limited! Yes, UCMD is a life-limiting condition. I will not grow old or see my new baby nephew become an adult. Furthermore, my quality of life is limited. To put it briefly, when I am ill I’m REALLY ill. I have spent much time in hospital with respiratory related issues including repeated bouts of pneumonia, pleurisy, and a collapsed lung. I have literally lost months of my life to UCMD – housebound, unable to eat and reliant on non-invasive ventilation.

4. What is the biggest positive about having a disability?

The positives are much more light-hearted! Concessions, being able to skip to the front of the queue and designated parking (although disabled bays are often occupied by sports cars lacking a blue badge!)

5. If you could only eat one food for the rest of your life what would it be?

Hmm, tricky! I do like variety. I guess I’d have to choose… mash potato?! That way I could always mix it up by adding herbs from the garden (or is that cheating??)

6. An apocalypse is imminent, you have 30 minutes to prepare, what 3 items do you pack?

Well, I guess if the apocalypse is coming then it doesn’t really matter as we’re all doomed anyway?! But, I think I would still pack a bottle of Lucozade (I live on it! Purely for the energy boost), my dog and my family!

7. When making tea would you pour the milk or water in first?

Water!

8. What is your favourite way to relax?

I like to shut myself away, snuggle up in bed or on the sofa, and listen to music or watch a good film.

9. If you could interview any human, dead or alive, who would it be and what would you ask?

Wow, I really don’t know. God! (who I don’t believe in – what a cop-out) He has a lot to answer for.

10. What would be your dream job?

I’m one of those people who never knew what they wanted to do. I’ve never been career focused or academically ambitious. All I ever wanted was to have kids! But, if I could be absolutely anything, I think I’d be a dancer. I’ve always loved everything about dance. And yes, I’m a huge Strictly fan!

11. You’ve just won 10 million pounds (congratulations!), what 3 things would you do with the money?

Sort my family out – erase any debts and buy them homes, cars and whatever else they might need or want. Make sure my closest friends are comfortable! Buy a holiday home(s). And finally, a home for myself, FULLY adapted!

12. Where in the world would you most like to visit and why?

Australia. For as long as I can remember I have always wanted to visit Australia. The snakes are a little off-putting but still, that’s where I’d head to first. Closely followed by America. I’d absolutely love to do a road trip – Route 66!

13. What one thing would you change about yourself?

Only one?! Again, I could write a list. Buy I’d have to say my body. It doesn’t work too well and I’m flipping uncomfortable in it!

14. If you could play any part in a film, past or future, real or fiction, who would you be?

Men get all the really great roles! So, if I were male I think I’d play the Joker in The Dark Knight. How much fun would that be! Since I’m not a man, I’d play… I don’t know!! Maybe one of the sisters in A League of Their Own (1992) or Uma Thurman’s roles in either Pulp Fiction or Kill Bill.

15. If there was a pill that would freeze you at your current age and you could live forever as you are now, would you take it? And why?

Nope, definitely not. I wouldn’t want to live forever. It would get pretty boring after a while! Plus outliving all my family and friends would be hell.

16. If you could trade lives with one person for an entire day who would it be and why?

My brother. He has the life I’ve always wanted. He is physically fit, handsome, funny, charming, popular, successful and he has a lovely wife, baby and home. Of course I don’t resent him for it and I want nothing more than for him to be healthy, happy and fulfilled. But to experience his life for just one day would be bliss. I’d never ask for anything else.

17. If you could time travel, where would you go?

Good question. There are so many periods throughout history that I’d like to visit. But it would be great to go back around 50 years, when my parents were kids and my grandparents were young. I never knew my maternal granddad who died when I was a baby. So I’d especially love to meet him.

18. If you were made Queen and allowed to pass one new law, what would it be, and why?

Argh, the pressure! I have no good answer to this. So I think I’ll just say longer sentences and harsher punishments for serious crimes. There really is no deterrent in this country.

19. What personal trait has gotten you in the most trouble?

Voicing my opinion and failing to filter! Over the years I have become more outspoken and more impassioned about certain issues. I tend to over-analyse and question everything. Oh and I am rather stubborn. If I believe something in something, I won’t budge.

20. As a child, what did you wish to become when you grew up?

Just happy I guess. As I said before, I never had a particular job or career in mind. I’ve considered various options and ideas over the years. But all I ever really wanted was a home and a family of my own. That’s it. Not much to ask, eh?

I don’t think it is.

I really hope you enjoyed this collaboration with Wheelescapades. Let me know in the comments.

I’d also love to hear from you and find out how you would answer these questions!

To keep up to date with Gemma, go and check out her blog and connect with her on social media.

https://wheelescapades.com/

https://twitter.com/gemmaorton

https://www.instagram.com/wheelescapades/

https://www.facebook.com/wheelescapades/

A Welcome New Arrival 🍼

Hi folks! How is your September so far? Mine has been pretty amazing for one very important reason.

At the end of August, my big bro and his wife welcomed their first child – a bosting baby boy! This makes me an incredibly proud and immensely excited auntie.

Here I shall refer to him aptly as Mr Squidge. But don’t worry guys, the new parents have gone with a nice traditional name that’ll see him through school unscathed.

Mr Squidge is, thankfully, a healthy, happy and content little bundle. He is a super cool character – by far the most chilled out baby I have ever known.

When he’s not closely examining ceiling lights (which are hugely fascinating!) or contemplating life’s many mysteries, Mr Squidge enjoys milky time, sleepy time and lots of poopy time!

A particular highlight was when he casually peed on his granddad’s lap! Well, when you’ve got to go…

Squidge is now three weeks old and it’s amazing to see how much he has developed already. His baby blues are wide open and ever inquisitive, and he is determinedly trying to hold his own head up.

Today, my mom and I spent all afternoon with him at our house. His Mama was here too of course. He’s not quite advanced enough to drive himself over. Not yet anyway.

While I was holding him, he spent quite some time studying, and trying to grab my face, no doubt giving me the once over. Can’t blame the kid really. I’d be suspicious of me, too.

We’re a small family, fortunate to live in close proximity. Being only a 10 minute drive away from my new baby nephew means that I can see him often and be a hands-on auntie (or as hands-on as my disability will allow).

I can’t wait to watch him grow, to comfort him, read to him, get messy at meal times, to blow bubbles, paint, draw and play with Play-Doh! Come on, who doesn’t love Play-Doh?!

But equally I’m reluctant to wish away the time and fast-forward his life. Every day is so precious and so cherished. …Too gushy??

Anyone who knows me personally will tell you how much I love kids. Give me a gaggle of kids over a room full of adults any day. The play, the silliness, the cuddles; the unpredictability and informality – what’s not to love?

So, suffice to say I am on cloud nine right now. If you read my recent life update, you will know that things have been somewhat stressful of late. But, the squidgey new addition to our family has truly mitigated all other worries.

Getting to know… Wheelescapades | 20 Questions

One thing I love about being a disability blogger is the fact that I am able to interact with other like-minded bloggers.

I recently got chatting with the lovely Gemma over at Wheelescapades. We quickly realised we have a fair bit in common: we’ve both studied art, we have a mutual love for all things Disney, and we both have muscular dystrophy, albeit different forms.

So, we thought it would be fun to collaborate on a blog post. To learn even more about each other, we decided to ask 20 juicy questions. You can find my answers to Gemma’s questions over at her blog!

Here are her answers to my 20 questions…

1. What is your biggest ambition in life?

I wouldn’t say I’m the ambitious type. There’s lots of things I’d like to see and do as you’ll find out throughout my answers. But when it comes down to it I’d just like to be content and happy. For my friends and family to be too. It’s the simple things that make life.

2. What is your dream job?

I love anything arty and creative. I’m too indecisive to give you one dream job title, but I’d like to be in an atmosphere where I am surrounded by creativity. I enjoy making things, drawing, textiles and I’m going to say I would like to work in theatre design, costumes and props.

3. What do you most regret?

I don’t think I have any major regrets. That’s no way to live.

I do often regret not ordering dessert when I’m out with friends and theirs arrives leaving me sugar craved.

4. If you could live anywhere in the world, where would it be and why?

Although there are so many places I’d love to visit, I think I’m perfectly happy living where I am. I love England, it’s history, its heritage, the traditions, and yes the weather! I know it’s something everyone moans about, I’m guilty of that too. I know it can be unpredictable and awfully grey at times, but I like the differing atmospheres. We are lucky enough to get sun, snow and thunderstorms, but nothing too extreme or scary.

On a smaller scale I like the area I live in, Norfolk. I’m in a small town, not far from the city, the sea and the countryside. Norwich is a diverse city of art, architecture and music. I can also easily get to London.

5. Dream dinner party guests: if you could invite any 5 people, alive or dead, who would you choose and why?

Alexander McQueen, Tim Burton, Andy Warhol, Stephen Hawkins, and Banksy. All creative, passionate and intelligent minds that know what they are/were and do their thing with conviction. Need I say more.

6. If you could visit any time period throughout history, when would it be and why?

Well I don’t think wheelchair access is going to be very reliable however far I travel back. As a mega Downton Abbey fan I’d love to dress 20’s style and attend one of Lady Mary’s Luncheons.

I’d also love to go back and spy on myself as a child, my Mum as a child or my grandparents.

7. If a genie were to grant you any 3 wishes, what would you wish for?

This is the one I’ve been struggling with (I take these questions seriously!). Do I go for the big things: world peace, a cure for SMA, an end to poverty?? Or the smaller stuff like a fully accessible luxurious house, enough money to help friends and family, to have a talent that can make me a living?? Basically it depends how good this genie is and what the rules are. There are always rules and consequences to these things! Maybe I shouldn’t rub the lamp…

8. What is your ideal holiday?

My dream is to visit Florence, Italy. The complications, discomfort and fear of losing or breaking my wheelchair has meant that I haven’t flown since I was a child.

I’m not a ‘by the pool girl’, although I do love a spa! My ideal holiday would involve seeing the sights, being around the locals, visiting little cafes, museums and galleries, plus a wheel along a river and cocktails on a roof – With warm but not sweltering weather. Don’t ask me where this destination is, although I’m open to suggestions.

9. If you were Prime Minister for one day, what would you do?

Cancel Brexit. Can I say that? Shouldn’t we have learned by 2017 a united world is a better world.

I think I might need longer than a day!

10. Who or what inspires you most in life?

I can be inspired by the simplest things. I wouldn’t say that one event or person has inspired me to be something. It can be a book I’ve read, a chat with a friend or a film I’ve seen. All these things can inspire thoughts, make me want to be a certain way or do a certain thing. In fact, I am often inspired just people watching. Seeing how people react can trigger a thought or idea.

11. Could you please share 3 interesting facts about yourself?

  • I won first prize in a national textile design competition. My prize was to visit Première Vision in Paris.
  • I eat almost everything with a fork, including Wotsits.
  • I haven’t seen my natural hair colour since I was 16. I’ve had almost every colour, including blue and red at the same time. I’m now 32.

12. How would you describe yourself in 3 words?

Persistent, sarcastic, tea-drinker.

13. If you could spend one day in someone else’s shoes, who would it be and why?

Can I say my cat even though they don’t wear shoes?

I’d lay around on the windowsill, worry free, watching the day go by. Maybe take a little nap and have some chewy treats. Get “cooed” and massaged on the head if I’m good.

14. What is your biggest fear?

Spiders! I really do hate them. And unfortunately most of my PA’s do too. I didn’t think of that question when I interviewed did I?! – Job title ‘spider catcher’!

Umm on a more serious note… everyone’s fear: losing family and friends.

Disability-wise: losing strength, the independence I have and communication.

15. What annoys you most?

Although you haven’t read question 18 yet, you can refer to it here.

I think moaners annoy me the most (yes I know I moan too, we all do). You know those people that make a big deal of nothing. I know everybody is different, we all have our issues and our weaknesses. But people, stop sweating the small stuff and appreciate what you’ve got. Enjoy the washing up! Appreciate the walk to the shop for milk to make yourself a brew. Yes you’ll get colds, and they are irritating, but the likelihood is you’ll be over it in a few days.

16. What makes you happy?

Being around friends and family, my cats, a day in the sunshine and drinking tea. Netflix days, ache-free days, a facial at the spa, a good book, Seeing the end result of my craft project, festivals and the outdoors too!

17. If your life was a novel, what would the title be?

‘Wheelescapades’ – the title of my blog, as that took me long enough to think up. I’m no good at these things.

18. What is your disability, and what frustrates you most about it?

I have SMA 2 (Spinal Muscular Atrophy Type 2).

I think it’s probably the small things that frustrate me the most. The little day-to-day things that most people take for granted. Yes I’d love to travel the world problem free and have an amazing job without limitations. But it’s not just me, and my disability that doesn’t get that.

What I’d like is to be home alone (with at least 7 cats), make myself a brew, switch on the TV, do all the crafting I want and get up for a wee when required! I’d love to fall into bed exhausted (without connecting my feed and breathing machine), sleep comfortably and uninterrupted and meet a friend for breakfast at the drop of a hat. I’d even be up for doing the washing up!

Also I’d quite like to just have a cold without wondering if/when it will put me in hospital.

19. In theory, if a magical cure were available, would you want it or not?

Okay, I know I’m probably supposed to say no here, as someone who is trying to change people’s perception of disability, blah blah… But yes, I would take that cure. I wouldn’t change my past life for anything. If I could keep the knowledge I have, the friends and family I’ve got and the experiences I’ve been through, then yes, give me that cure!

20. Why did you become a blogger?

I get into some awkward, funny and difficult situations mainly due to my disability. I also get different experiences and treatment with/from people because I am a wheelchair user. My friends and I would always joke about this; the good and the bad, as a way of coping I guess. Sometimes you have to laugh or you’ll go crazy. Often saying “if only people could hear us” or “I should write a book of all this drama”. Well I guess blogging is my book of tales.

I also wanted a serious side to the blog. Not many websites give you the gritty details of a venue’s (in)accessibility. Yes, they are starting to declare themselves ‘wheelchair accessible’ or claim to have an ‘accessible toilet’. Bbut accessible can mean so many different things. Just getting through the entrance doesn’t make a venue accessible. I wanted to chart good and bad access and to get people to look at it more.

I’d like to thank Gemma aka Wheelescapades for taking the time to answer my questions, and for being so candid!

I’d also love to hear from you! How would you answer my 20 questions?? Please leave a comment.

To keep up to date with Gemma, go and check out her blog and connect with her on social media.

https://wheelescapades.com/

https://twitter.com/gemmaorton

https://www.instagram.com/wheelescapades/

https://www.facebook.com/wheelescapades/

 

Interview | Author Janine Shepherd

Here is my latest interview, with Janine Shepherd, for Disability Horizons.

Janine Shepherd: A Broken Body is not a Broken Person

Former elite athlete and celebrated author, Janine Shepherd shares her inspirational story in the best-selling memoir, Defiant: A Broken Body is not a Broken Person.

It chronicles her journey following a tragic accident that cut short her bid to compete in the 1988 Calgary Winter Olympics.

Partially paralysed and suffering life-changing injuries, Janine made the courageous decision to let go of her former life and face adversity head-on, creating a new dream for herself.

Here I speak to Janine about her journey, the challenges she has faced and how she’s reinvented herself and her outlook.

Hit by a truck in 1986 during a bicycle ride in Australia’s Blue Mountains, Janine was not expected to survive. Told by doctors that she would never walk again, nor have children, she spent the next few years rehabilitating her permanent disabilities and defying all the odds.

A mother of three, best-selling author, public speaker, aerobatics pilot and the first female director of the Civil Aviation Safety Authority, Janine speaks candidly and with humility about how and why she reinvented herself and changed her self-perspective.

Janine, please tell us about your disability and how it continues to affect you.

The accident gave me severe spinal cord injury – I broke my neck and back in six places. After extensive surgery and rehabilitation, there was just about enough nerve connectivity to be able to learn to walk again, albeit with a significant limp.

Now, in addition to significantly wasted lower leg muscles, I have limited feeling from the waist down and chronic bladder and bowel dysfunction. I also have to self-catheter a lot, which results in regular urinary tract infections. Your readers might agree that these issues are possibly the worst part of living with spinal cord injury.

‘Janine the machine’ is how you referred to your old self – the elite cross-country ski racer. Do you feel this remains a true representation of your character? If not, how would you now define yourself?

Even though I felt that my body was ‘broken’ after my accident, I realised that my spiritual essence and mental toughness remained unchanged. I soon learned that being ‘Janine the machine’ had less to do with athletic prowess than unshakeable determination and persistence. Recognising that gave me the strength to reinvent my life in a most remarkable way.

Following the accident and being unable to walk, you focused on learning to fly. In your book, you state: “I had to find something to replace what I had lost in my accident”. Why was it so important to set yourself such an ambitious goal?

We often define ourselves by things outside of us – our jobs, our relationships, the roles we play in life. When we lose those things, who we are and everything we believed in is challenged. When we experience such immense loss in life, whatever form it may take, it is very easy to slip into despair, which is what happened when I got home from the hospital. Flying filled me with so much joy and gave me the inspiration and hope that I really could rebuild my life in an unlikely and extraordinary way.

The feeling of despair was almost inevitable. You state that you suffered depression on returning home after a six-month stay in hospital. How did overcome this?

I overcame the despair by throwing myself into flying as well as my physical therapy. At first, this was more discipline than it was a spiritual or emotional triumph. I simply interrupted the pattern of depression by charting progress on all fronts, no matter how incremental it may have been from one day to the next. This helped to refocus my life and channel my depression elsewhere. Hope and application proved to be powerful antidotes to depression.

You discuss your choice to keep fighting versus letting go and accepting not only your body but also the circumstances. This led you to stop asking “why me?” but rather, “why not me?” Why was it so essential to change your perspective?

Before my accident, I had led a very narrow life in that all of my friends were athletes of some sort. In hospital, I met so many other people, whom I would normally not have met. This opened my eyes to the fact that I wasn’t alone on this journey.

Even though we came from very different walks of life, we experienced similar struggles with acceptance and recalibrating how to live life post-recovery. Equally important, we had in common the typical hopes and dreams of anyone for a ‘normal’ life once we left the spinal ward.

You have faced great adversity on a number of occasions. Having rebuilt your life following your accident, you then later experienced the upheaval of divorce and financial ruin. What gave you the strength to once again thrive and persevere despite these challenges?

I developed a philosophy very early on in my days as an athlete called ‘loving the hills.’ One of my racing advantages was that I took on the climbs my competitors dreaded with a passion. That not only made me physically stronger but mentally tougher as well.

This proved to be more than just a training philosophy; it became my choice as a way seeing and living life. Ski races and life experiences are both full of hills; loving them not only gave me a competitive edge but also developed my resilience. So when faced with a life challenge that, metaphorically, looks insurmountable, I take that on as just another ‘hill’. Loving it, not fighting it, teaches me the lessons I need in order to grow into a wiser and more compassionate person.

One of the themes of your book is the concept of disability. You emphasise the importance of believing in the power of potential and adopting a defiant mindset, so that one may not be defined by their physical limitations. Can you share your outlook on disability?

I went from being a gifted, multi-sport athlete to having to relearn how to walk. So, it took me years to finally and fully accept that I am a woman with a disability. At first I felt embarrassed by many aspects of my spinal cord injury, bladder and bowel dysfunction.

However, as I look back and see how much I have achieved, despite my challenges, and how much I have overcome, I feel like the aspect of loss in my life is no longer something to try to hide. Instead, I’m proud of being able to acknowledge my disability and put my energy into making the best use of my gifts.

Despite your many life-altering setbacks, you write with great humour, humility and encouragement. How have you managed to maintain such a positive and empathetic attitude? And do you feel that humour is important in maintaining a healthy outlook?

I absolutely feel that being able to laugh at life is an essential part of the healing process. I tell others not to take life too seriously or you’ll cloud the experience. There are so many documented mental and physical health benefits of laughter. Humour helps me to deal with chronic pain, something that remains a part of my life on a day-to-day basis.

You state that the loss of your athletic career and your physical limitations ultimately allowed you the freedom to embrace life’s potential and infinite possibilities. This is a remarkably refreshing and open-minded viewpoint. How have you ensured that you are defined by your accomplishments rather than your broken body?

I believe that life is about loosening our grip on the things that we feel entitled to. Many of the ancient teachings state that this only leads to suffering. When we let go of the life that we feel we should have, we gain the freedom to see the world through new eyes, and create a more ideal life we can only then envision. This is the gift that comes from realising that life is not about having it all, but loving it all, even the painful parts.

Finally, what do you hope readers will take away from your memoir?

I believe that each of us serves both as companion and as mirror to those we meet along the way. When we accept that we are not alone on our journey, and just how precious and short it is, we become open to seeing the world from a perspective of love and hope.

We then understand that, despite the inevitable life challenges, we always have the choice to reinvent our lives and embrace the new with a sense of wonder and joy. My sincere wish is that my story helps each reader better connect with his or her defiant human spirit. And, that doing so serves to foster the pursuit of the uniquely rich, extraordinary life that awaits every one of us.

I would like to thank the wonderful Janine Shepherd for speaking with me.

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Life Update ~ Carers, Hoists and OT’s

Hi folks, I hope you are all healthy and happy.

I feel like it’s been a while since I blogged about the goings-on of my day-to-day life. Not a particularly exciting post, granted. But I thought it might be useful to share these ‘goings-on’ with you, as I’m sure there are some of you facing similar struggles.

I have for the past few months been occupied with life crap – specifically, disability-related life crap – which has meant that blogging has unfortunately had to take a backseat.

Righty right, I’ll try and keep it brief…

Care

As some of you may know, I live with my parents who are my primary source of support. I do have a part-time carer who I employ, but otherwise my Mom (yes, I say Mom vs Mum) is my main caregiver. Sadly she herself suffers with progressive osteoarthritis, and following exploratory surgery in October, it was decided that she needed a full knee replacement.

This in fact took place on Sunday 20th August, although it wasn’t until a couple of months ago that Mom was given a date for surgery. However, prior to this I had to put in place provision for my care needs. This involved recruiting a second carer and ensuring I have all the equipment I would need.

For the past 4 months I have searched for a second carer. I advertised everywhere and anywhere – newspapers, news agents, local shops and the post office, job sites, Facebook and so on. The response has really surprised and frustrated me – so many no-shows, let downs and people failing to read or understand the basic job specification.

I ask very little of applicants. I don’t request references, qualifications, experience or even a CRB/DBS (criminal records check). I interview informally in my own home, and with employees I am flexible, easy going and more than fair, taking into consideration their individual circumstances.

However, despite the fact I am completely non-ambulatory, I have never used a hoist. Thus far, family and carers have always preferred to lift me manually as it’s much quicker and frankly less faff! I’m only tiny – approximately 5 feet tall and 5.5 stone in weight. So until very recently, it has always suited to go without a hoist.

Understandably this is off-putting to potential applicants. But, every carer I’ve ever employed has openly admitted that working for me is a breeze compared to any other job they’ve had, and that for them the lifting is a non-issue. Nevertheless, I appreciate that most would prefer not to lift – that’s fair enough.

Hoists

With this in mind, I instigated the process of applying for a ceiling track hoist to be installed in my ground-floor bedroom/ensuite bathroom. I will need a H-frame in the bathroom and a short track from my bed to the bathroom.

Not a huge ask really, particularly as I have never received any support in the way of equipment. Everything I have – wheelchairs, bed, bath lift etc. has been self-funded. The post-code lottery is a very real and unjust thing, people! But that’s a topic for another day…

Dealing with Community Occupational Therapists

I contacted the community Occupational Therapists, explained the situation and requested a needs assessment. I was initially fobbed off with the excuse that they’re vastly understaffed and that I would need to be terminally ill in order to qualify. When I asked how they suggest I manage after Mom’s operation, the OT replied that I should “camp out” and be dressed, bathed and toileted on my bed!

Disgusted at her casual disregard, I asked how she would feel having all her personal care needs carried out on the bed she sleeps in. “Oh well, this is the situation we’re in. It can’t be helped”, was her insensitive response.

I then contacted my neuromuscular consultant who wrote a letter of support. On receipt of this letter, the OT’s suddenly found time to carry out a needs assessment in my home – shocker! (It’s not what you know, but who you know, right!?)

Following this, two reps – one from TPG, the other from Prism Medical – came and measured up in order to provide quotes for the ceiling hoist. I have since learned that the second quote is unusable, which frankly is no surprise, as he clearly had no clue what he was doing; at one point asking to see the gas meter. Even the OT who accompanied him questioned his experience.

In the meantime I have been issued with a portable hoist, though it has taken many weeks to receive a usable sling. Rather than measuring me, then visiting me in my home with a variety of slings to try, the OT’s insisted on sending one at a time. After much harassment from me, a community OT finally conceded and actually attended to properly assess me for a sling.

Honestly, they complain that they have a backlog of work and no time, and yet they waste so much. The sling issue could have been carried out in one appointment. Simple, done, move on. But instead, they chose to drag it out for weeks simply because they wouldn’t visit or listen to the patient.

And now…

Today is Sunday 10th September, and no further progress has been made with the ceiling hoist. Yet again I will have to chase the OT’s, otherwise nothing will ever happen. Sad but true.

I had taken on a second carer who began shadowing at the beginning of August. She was very enthusiastic, supportive and accommodating – said all the right things. Then whilst on my way to visit mom in the hospital, two days after her surgery, I received a message from the new carer, who was due to work that evening. She issued a stream of excuses as to why she couldn’t (translate: wouldn’t) do the job.

Until then, my current carer had always been present. Essentially it turns out she was happy to come and get paid to watch someone else do the job. She just didn’t want to have to do any work herself. Now I know why she’s had so many jobs!

So, as it stands I am managing as best I can with my one part-time PCA, though she is planning to leave in late October to train as a paramedic; thus posing yet another obstacle.

Having realised how long this post is, I think I will leave it there for today, though there is much more to tell. Suffice to say, the saga continues…

Interview | Matt “Hambo” Hampson

Parallel London 2017

Here is my interview with Matt Hampson for Disability Horizons

With less than a month to go before the return of Parallel London (an all inclusive fun run and festival), I spoke to ambassador Matt Hampson about his involvement, and why the event is so important to him.

Matt “Hambo” Hampson is a former England Rugby Union prop who, at the age of 20, was paralysed in a near-fatal routine scrum session. Despite having severed his spinal cord in the accident (which took place twelve years ago in Northampton) Matt is now busier than ever and living life to the full as a C4/5 tetraplegic.

In 2011, Matt decided to establish a charitable foundation in his name, to inspire and support others who have suffered similar catastrophic sports injuries.

A mentor, fund-raiser, columnist, award-winning author, rugby coach, patron and ambassador; Matt truly epitomises the foundation’s ethos – ‘Get Busy Living’.

Sport, Injury & Disability

1. Hi Matt, would you please tell Disability Horizons readers a little about your sporting background and your subsequent disability?

I had my accident back in 2005 playing for the England Under 21s. I suffered a dislocated neck in a scrummaging accident, and had to be resuscitated on the pitch by the referee (and former paramedic) that day Tony Spreadbury.

My life obviously changed forever. One minute I was a young, fit sportsman and the next I was paralysed from the neck down. It was pretty tough to deal with. But it’s made me the person I am today and I think it happened for a reason. And that was to set up the Matt Hampson Foundation, which aims to inspire and support young people seriously injured through sport.

2. How did you adapt to no longer being able to participate in sport as you had previously?

It was quite difficult but I think I tried to channel my energy into something productive, which was to try and focus on something that I could do rather than what I can’t. So now I do my motivational speeches, I see beneficiaries and I try to use my profile to influence and help other people in similar situations to the one I found myself in twelve years ago.

Charity

3. Can you tell us about the Matt Hampson Foundation – how and why did you set it up?

I set the foundation up because when I was in hospital I felt there wasn’t enough support out there for people in the same situation as myself. I felt quite isolated. I think the Matt Hampson Foundation aims to get individuals and families together and show them that there is life after serious injury through sport. It also tries to motivate them to ultimately ‘get busy living’ (an ethos inspired by Matt’s favourite film, The Shawshank Redemption).

4. ‘Get busy living’ is the ethos of the Matt Hampson Foundation, which aims to inspire and support young people seriously injured through sport. How do you achieve this?

We try to show people there is a life beyond their injury and that you can live a great and fulfilled life even with a catastrophic injury. Everyone has X amount of time on this planet, so why not enjoy it.

So yeah, we try and use ‘Get busy living’ as the sort of ethos around the foundation.

Disabled People & Sport

5. What are your thoughts on involving disabled people in sport?

I think after the Paralympics in 2012, it changed the world of disabled sport forever. I think people started looking at disabled sports people as proper sports men and women rather than feeling sorry for them, and almost letting them participate as a sort of afterthought and a token gesture. I think the Paralympics in London really showed that and put them on a level playing field with able-bodied athletes.

Parallel London Ambassador

6. How and why did you become an ambassador for Parallel London?

It’s to put people on a level playing field, whatever their disability – whether you’re able-bodied, in a wheelchair, young or old – anyone can participate in Parallel London.

I think it’s so, so important to know that you can do things and be alongside disabled people, able-bodied people and all be on a level playing field.

7. What does Parallel London mean to you personally, and how does it promote disability and diversity within sport?

Parallel London to me means inclusivity. So basically, trying to get everybody involved whatever their background, ethnicity or disability – all can be involved with, and contribute to Parallel London. It just shows that everybody is equal, and for a day it makes people realise that.

You can find out more about Matt’s involvement with Parallel London and the Matt Hampson Foundation. ‘Engage: The Fall and Rise of Matt Hampson’, by Paul Kimmage, is available to purchase online.

Many thanks to Matt Hampson

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The Kindness of Strangers | Wheelchair Life ♿

I was out shopping yesterday in my Quantum 600 powered wheelchair. While the many other shoppers bustled past without a second thought, one considerate old lady stopped to ask if I needed her help to reach anything.

As fellow wheelchair-users will know, shopping can be frustrating for various reasons. Not only are we grappling with the general public (the pushing, shoving and impatience), and trying to navigate narrow aisles without running over any toes; we are also bum height! 😣

Not only that – reaching anything above or below torso level is a challenge, particularly with elbow contractures and poor grip (as in my case).

With that in mind, those few kind words from one generous old lady truly made my day. It really is the little things in life – the small gestures – that make a big difference. If only everyone was so thoughtful!

I am aware that some disabled individuals may take offence at such an offer, presumably seeing it as a sign of pity – the implication being we (disabled people) cannot manage by ourselves. However, I personally cannot construe it as anything other than sincere concern and consideration for a fellow human being.

We all need help and support every once in a while, regardless of ability or circumstance. Even if you don’t require assistance from others, at least show some gratitude and have the courtesy to decline their offer politely.

#respecttotheoldies ✌💗

#MuscularDystrophy

#WheelchairLife ♿

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