Eight months into our relationship, I still get flutters at the prospect of spending the night with my partner Greg.
And, like every woman still in the ‘honeymoon phase’, I’ll spend the time before we meet getting ready; showering and slipping into some sexy lingerie, before finishing with my favourite scent.
However, my preparations require a bit more planning and assistance than other women’s. Because since a freak accident in 2014, I have been tetraplegic – paralysed from the chest down, with limited movement in my arms.
As a wheelchair user who requires round-the-clock care, one of my carers, who I call my PAs, will help me with all of the simple feminine tasks that others take for granted. While I can thankfully still eat and drink independently, I need help to get in and out of my wheelchair, and sitting up in bed.
Once Greg has arrived, my PA retreats to her room in my flat, giving us the space to enjoy an evening of intimacy and fun together.
Though my accident turned my life upside down, something I’ve always refused to give up on is my pursuit of love – and good sex. Just because I’m disabled, why should I not want passion in my life?
It’s a huge source of frustration that society assumes those with disabilities automatically lose their libido and desire for romantic connection along with our mobility.
Since a freak accident in 2014, Heidi Herkes has been tetraplegic – paralysed from the chest down, with limited movement in her arms
So, rather than let romance become a taboo in my life, I’ve become an advocate and campaigner for others like me, sharing my experiences to raise awareness – and stress that we are as deserving of love and intimacy as anyone else.
Since my accident, I’ve had good, bad and awful dates. While I’ve met some lovely men, I’ve also fended off those with an inappropriate interest in disabled women and received some hurtful messages.
But finally, aged 45, I’ve fallen in love – something I wasn’t sure would ever happen.
It was such a small moment that shattered my life beyond recognition.
One evening in March 2014, I’d been out for a meal with friends near my house in London. Returning home, I was desperate for the loo, so ran up the stairs – losing my footing around the sixth step and falling backwards to the floor.
My memories of what followed are hazy. I know my housemate found me, paramedics arrived and I was rushed to hospital where I had surgery. I wasn’t conscious enough to realise I couldn’t feel much of my body, that I’d suffered a serious spinal cord injury.
I woke up in intensive care, with a feeding tube, a tracheostomy – where a tube is inserted into your windpipe through an opening in your neck – to help me breathe and my devastated family around my bedside. Looking at my parents’ worried faces, I kept trying to say, ‘I need a hug’, not understanding that the tracheostomy meant I couldn’t speak.
Initially, the strong drugs I was on stopped me realising I couldn’t feel my legs, but I felt so confused and scared; what had happened to me?
Soon, doctors gave me an answer. I had a C4 and C5 spinal cord injury – affecting the fourth and fifth vertebrae in my neck – and the damage wasn’t fixable. I would never walk again and any movement in my arms would be limited.
At first, it was impossible to absorb, let alone accept, what they were telling me.
I was 34, a successful bridal hair and make-up artist, running my own business and travelling all over the world. Now, I was facing a life where I couldn’t even use the shower unaided.
At the time of my accident, I’d been single for around six months. My last relationship, with a man called James, had lasted five years but had run its course.
A couple of days after my accident, I was stunned to see an email from James, telling me he missed me.
He had no idea about my accident but, to me, it felt like fate. I told him what had happened and the next day he was at my hospital bedside, ignoring the tubes and beeping machines, kissing me as if everything was just as it had once been between us. There was no ‘let’s get back together’ conversation; it was unspoken that I needed him and he was there for me.
Heidi found love with Greg, who had sustained a life-changing frontal lobe brain injury in 2011, after they matched on the dating app Hinge
Through my vulnerability and despair at that time, he was a link to who I still was underneath my newly acquired disability. I felt a glimmer of hope that perhaps I could be ‘me’ again, and reclaim my life – albeit a new version of it.
After two months in hospital, I was transferred to Stoke Mandeville in Buckinghamshire, which has a specialist spinal injuries centre.
Every day was filled with physio, hydrotherapy and gradually getting used to being a wheelchair user.
I had to accept I now needed help with things such as getting washed and dressed. I cried solidly for the first fortnight and was briefly prescribed antidepressants. But then I decided I couldn’t live like this. I needed to channel all my natural positivity and determination to move forward.
I found happiness in the small things. I was overjoyed I could still do my own hair and make-up – it may sound silly but it meant so much to still have that skill, and be able to make myself feel and look better.
I’d even go out to a nail salon to get a manicure, or have a professional come in to give me a spray tan from time to time, because it made me feel like myself.
A month after I moved there, doctors allowed me to leave for the night to spend time with James at a local hotel. Though they didn’t realise it – no one had ever brought up the topic of sex with me – we had decided this would be our first attempt at resuming our sex life.
I felt nervous. We’d kissed and cuddled in my bedroom at the spinal unit, and even engaged in some foreplay, but the prospect of having sex again was daunting.
Prior to my accident, I’d been sexually confident; I loved intimacy and the connection it created. I wanted that again but now I had no idea if I would be able to feel anything, or give him any pleasure.
I also had no idea how James would feel about it compared with our sex life before.
Heidi was confident before her accident, but the idea of having sex afterwards felt ‘daunting’
But I was ready to find out. It would, thankfully, prove to be a deeply positive and defining moment in my emotional recovery.
Sex with a disability was a completely new experience. James had to lift me into bed and help position me – and there were some limitations with those positions and the ways in which I could move and touch him – but it didn’t matter.
I could still have sex, give a man pleasure and, crucially, experience it myself. When I orgasmed, it felt so empowering. It was an amazing moment.
That night made me believe that although my future was still uncertain, it was within my power to shape it and find the positives.
In February 2015, I moved into an adapted ground-floor flat in London, with a care package provided by my local authority that included round the clock assistants.
After almost a year in hospital and rehab, I was determined to re-start life and be as independent as possible.
It took time to adjust to my PAs always being around, alongside James and I spending time together. It was a steep learning curve, figuring out how to be in a relationship as a disabled woman.
I was very firm that I didn’t want James to be my carer; I wanted to maintain that separation so he saw me as his girlfriend, not a patient.
Being in rehab had been like being in a bubble; it was only now that I started to fully accept how my life had changed.
James was a rock though, and my assistants have always been incredible women, supportive of my desire to live as full a life as possible. With their support and my family’s, I made it through the harder days.
And with James, I re-learned how to have sex within the parameters of my disability, but without compromising on satisfaction.
We experimented with things like using a wedge on the bed so I could be in different positions, or he’d hold my hips steady with my hands secured to the headboard so I could be on top.
In 2020, after another four years together, James and I split amicably. There was no big reason, things just ran their course between us as they had before.
It was then I found myself, for the first time, as a single woman in a wheelchair on the dating scene.
I had no idea what lay ahead. Would any man be interested in me? Would they see past my disability – or would it prove to be a block to any more relationships?
I was completely transparent in my dating app profile that I am disabled, using a photo of me in my wheelchair. I understand that for some men disability is a deal breaker, so I didn’t want to waste their time or mine.
Even before my accident I wasn’t sure if I wanted a family, so it’s not something I see for myself, and I’ve made peace with that, Heidi writes
But for the rest of my profile I didn’t focus on my disability, instead writing about my love of good food, interior design and travel, because there is so much more to me than my wheelchair.
While I wasn’t expecting to find ‘The One’ online, I was hoping for some fun and companionship, the opportunity to flirt and be romanced. Sex wasn’t a priority, but I did hope it wasn’t in my past.
Having been unsure if I’d get any interest, I actually received quite a lot. I behaved just as I would have done before my accident, being selective and sticking to my usual standards.
The downside of being visibly disabled on dating apps is that I did attract men whose interest felt creepy rather than genuine.
Then there were the men who sent patronising messages like ‘you’re quite attractive for someone in a wheelchair’.
But over the years, I did go on some really enjoyable dates, usually with older men who were more mature.
I was always open-minded about who I dated in terms of them being disabled or not; I was only interested in the person they were. I went on a date with one guy who also used a wheelchair, but the rest were men without disabilities.
I was intimate with a few, although I never had sex with any of them; we didn’t reach a point where I wanted to take it that far. They were, I believe, very pleasantly surprised by how capable I was and not shy about them giving directions!
In 2019, through social media and becoming a Stoke Mandeville spinal research ambassador, I started campaigning and advocating for disabled people, with an emphasis on sex and relationships.
Along the way, I’ve met other disabled people who would have liked companionship, sex and lasting love, but were struggling to find it. Women told me they often felt despondent about ever having romance in their life, because it felt like there were still so many assumptions, negative attitudes and barriers around disability.
I wanted to show the kind of life that women like me are capable of. But I never felt the spark needed to ignite a proper relationship.
Then, this time last year, Greg and I ‘matched’ on the app Hinge and he messaged me.
He too had learned to live with disability. In 2011, on a golfing holiday, he fell and banged his head, almost dying as a result of the frontal lobe brain injury he’d sustained. After a year in a wheelchair he learned to walk again, although he was left with a significant limp and relies on a crutch.
The accident also impacted his short-term memory and made it impossible for him to return to his career in investment banking.
Messages progressed to Facetiming one another and, last August, six months after we’d initially matched, we had our first date – a lunch in Oxfordshire, between our homes in London and Solihull. The connection was instant; his incredible smile melted my heart, and we had our first kiss before the meal was even served!
Humour is something I value a lot in a man and Greg made me roar with laughter.
He told me his accident had changed him for the better. Before he was materialistic and didn’t appreciate what he had.
I saw in him positivity, resilience and someone who has experienced the fragility of life and now grabs it with both hands – just like me.
We haven’t looked back since that first date. We see one another most weekends – he’ll drive to London or one of my PAs will drive me to Solihull.
Greg, who volunteers at a rehab facility and is a public speaker, had never been in a relationship with a disabled woman before, so I’ve been his guide in the bedroom.
Together, we’ve brought lots of creativity, experimenting with positions; we’re even thinking about how we can incorporate the hoist I use into our sex life!
With Greg, I feel desired, safe and loved, and it’s wonderful after those years on dating apps to feel this way.
Greg’s experiences mean he doesn’t hold back when it comes to his emotions. He loves to tell me that, one day, he’s going to marry me.
Looking to the future, though I physically could carry a child, even before my accident I wasn’t sure if I wanted a family, so it’s not something I see for myself, and I’ve made peace with that.
Being with Greg, I feel deeply content, the happiest I’ve been since my accident. With him, I have unlocked a future filled with laughter, love and, of course, great sex.
- Follow Heidi and Greg on @heidiherkes and @gregweston1976
As told to Eimear O’Hagan
