Navigating Love & Life as a Disabled Woman | Muscular Dystrophy

Let’s be honest, when we’re young, we’re all enticed by a pretty face or a good body. Attraction is primarily physical, and to put it bluntly, at 18, most of us would shag anything with a pulse – opportunity is everything.

I cringe when looking back at some of the guys I fancied and gave my attention to! What the bloody hell was I thinking?!

Each to their own, but I was never a one-night-stand type. And not because I’m a tiny, delicate woman in a wheelchair, and therefore more vulnerable. That didn’t even occur to me. Oh, the naivety of youth!

A collage of four photos of me in my powered wheelchair

Much later, I reluctantly signed up to dating app Hinge, which lasted a total of two months.

I tried modern dating (eurgh!), which, in my limited experience, seemed to consist of shallow idiots and the phrases “you’re no one’s type”, “get in the car!” and, “let’s book a hotel room”.

Responding with a firm no, I was told to “fuck off then”.

There are some lovely people out there!

On reflection, it probably wasn’t the best idea to tell one bloke that his car was shit, but it made me laugh as I rolled home alone in my powered wheelchair.

Growing up, a friend of mine repeatedly told me, “you need a big strong guy to pick you up and throw you around”.

I can see where she was coming from, but even as a young teen, I always thought, why? Don’t I just want someone to care?

Eventually, I did date that guy – the gym guy. And yes, for the first few months it was great. It was fun, liberating, and as another friend once said, “he gave you a sense of independence and adventure”. She was totally right.

In terms of practicality, it made life a hell of a lot easier for me, as a non-ambulatory wheelchair-user. For a fleeting moment, I thought that was what I wanted.

But, ultimately, I couldn’t rely on him and I felt very much like an option, a burden, and too much to take on due to my disability. He was physically incredibly strong, but mentally and emotionally very weak.

I didn’t realise it at the time, but at that stage, I was willing to accept the bare minimum – stupid girl!

I invested my time and energy in the wrong place, the wrong person.

The experience changed my outlook and, as cliché as it sounds, made me realise my worth.

You live, you learn, you move on.

As we get older, our perspective, values and priorities change.

These days, I can’t think of anything worse than attempting to flirt (awkwardly) with some Tinder clone. Quite frankly, I’d rather cuddle up at home, alone, with a nice cuppa tea!

At 33, my life certainly isn’t as I imagined or hoped for as a kid. Then again, with age comes the realisation that life rarely turns out as planned.

I’m no longer impressed by aesthetics. Trust me, a pretty face will only get you so far in life.

Above all, what I want is someone to care, unconditionally. Simple as that.

Don’t we all??

Don’t get me wrong, I cherish my alone time and independence, and I’m more than capable of caring for and supporting myself (mentally, anyway).

I’ve endured a fair amount of crap and spent over 90% of my life single. I’m certainly not the type to need a man.

I’m not interested in grand gestures, a lavish lifestyle, fancy house, or gym-bods!

But, for someone to choose you, want you, and stand by you, even when the shit hits the fan – especially when the shit hits the fan! That, to me, means the world.

Me, in my powered wheelchair, looking out to sea

33 | Getting “Old” With Muscular Dystrophy

According to Generation Z, once you hit 30, you’re OLD!!

Photo of an old woman, wearing sunglasses and holding up both middle fingers

I recently turned 33 (positively primeval!) which, I guess, means I should be stocking up on Pond’s wrinkle cream, Werther’s Original, and tea – lots of tea!

Considering I still look 12 – a blessing and a curse – I might save my pennies and give the wrinkle cream a miss. I do love a cuppa, though.

A fairly recent selfie of me, in my powered wheelchair, wearing ‘old lady’ fluffy socks and no makeup

33

This year’s birthday was a tough one…

In October, I caught Covid (bit of a buggar!), which hit me hard.

“Normal” life came to an abrupt halt and, 5 weeks later, I’m still struggling with breathlessness, pain and exacerbated chronic fatigue.

For those of you who don’t know, I was born with a rare form of Muscular Dystrophy – a progressive condition. Consequently, my lung function is total crap, immunity impaired, and a significant scoliosis causes my internal organs to fight for space.

Illustration provided courtesy of ‘The Disabled Life‘

~ Find out more about my life with Congenital Muscular Dystrophy ~

I’m a seasoned pro when it comes to extended periods of enforced isolation and inactivity, resulting from a lifetime of ill health. Fortunately, I’m more than comfortable with my own company!

In all seriousness, spending your days sat in the same chair, in the same room, attached to a ventilator 24/7, unable to make it as far as the kitchen, let alone leave the house – it’s…really not good!

This latest period of downtime allowed me to reflect on my 33 years – what I’ve learned, and what I want to focus on going forward.

My Life Lessons

Stop caring what others think of me

(because, actually, they’re probably not thinking anything)

I can trace this back to a comment made by a fellow pupil at primary school who told me, “you look normal when you sit down but really weird when you walk”.

A photo of me, aged 4 or 5, wearing primary school uniform and visible leg splints

I remember it vividly and, ever since, I’ve been painfully self-conscious, particularly about my appearance. But, now I’m ‘old’, I’m trying not to care about the opinions of others, especially total strangers.

Take me as I am or not at all.

Be my true, authentic self

I once had a (sort of) date which ended up in the guy’s completely bare bedroom. In this room was only a bed, some strewn clothes and a copy of, Alice in Wonderland. Rather than attempt to flirt and seduce (yeah, I’m cool), I turned my attention to the book and asked what it meant to him.

His answer made an impression on me:

“I like it because it’s about being open-minded, being yourself, holding onto your identity, and being comfortable with who you are. I’m weird, you’re weird, everyone’s weird! And that’s a good thing, in my view.”

Man, he was…DEEP!

Don’t waste my time, effort or tears on those who don’t care

I think, for most of us, our social circle becomes smaller as we age. And this isn’t a bad thing! On the contrary, you learn who you can be your unfiltered self with, who is willing to tell it as it is, who has your back, and who you can count on when times are hard – the ‘no matter what’ friends and family.

I am guilty of investing too much energy into the wrong people. But, from here on, I will realise my worth and focus only on those who bring joy to my life.

Well, I must now bring this lengthy blog post to a close and get back to my milky tea and digestive biscuits.

~ The content old fart that I am!

Image of an old lady happily drinking a cup of tea

Mentoring Kids

Very few people know that I used to mentor and teach art to primary school children.

I’ve always found it easy to interact with kids. They say it how they see it – no agenda, no bullshit. And I have a very low tolerance for bullshit!

I’d happily take on a room full of kids over a room full of adults, any day!

I mentored one particular lad for about 18 months. He had just turned 8 when I first met him. He came from a deprived area, one of four siblings, his dad was in prison and his mum…well, let’s just say she wasn’t as conscientious as she should or could have been.

Later down the line, his 12 year-old sister accused one of the younger male teachers of indecent assault. Blimey, I remember that day vividly!

The lad, (let’s call him Bob!), was a lovely kid – really polite, always happy to see me (nice to be appreciated, eh).

Bob really struggled with reading and writing. To begin with, he refused to even try. All he wanted to do was play games. Time for negotiation – reading first, then we play games. He would often look up at me to read out the longer words for him. No mate, give it a try first. Break it down and work it out.

Admittedly, the school books were pretty crap, so I bought some more interesting ones to motivate him. He liked dinosaurs and pirates so that’s what we mostly read about.

I had studied art at university and he soon noticed that I could draw. So from then on, every session – “draw me a dinosaur!”, “draw me a pirate!”

Flipping heck, kid! How about you draw me a dinosaur!

In all honesty, I didn’t mind. It was nice to see him enthusiastic about something.

Despite my very obvious disability, in all that time, Bob never once questioned it – not that I would have minded if he did. From the get-go, I was just Caz the mentor.

He questioned everything else, mind you!!

~ How old are you?
~ What do you do?
~ Are you married?
~ Do you have kids?
~ Why not?
~ Where do you live?
~ Who do you live with?
~ Can I see your ID? (Yes, I showed him my ID to which he responded, “THAT’S NOT YOU!”)
~ What’s your real hair colour?
~ Can you dye your hair so I can see it, please??

NO, KID!!

I miss Bob. Happy days.

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.

Tag: Learning

Navigating Love & Life as a Disabled Woman | Muscular Dystrophy

33 | Getting “Old” With Muscular Dystrophy

33

My Life Lessons

Stop caring what others think of me

Be my true, authentic self

Don’t waste my time, effort or tears on those who don’t care

Recommended Reads

‘Defiant’ by Janine Shepherd

‘Wheels of Motion’ by Justin Brown & Lucy Hudson

‘True Grit and Grace’ by Amberly Lago

Mentoring Kids

Interview | Author Janine Shepherd

Janine Shepherd: A Broken Body is not a Broken Person

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