This Was Not The Plan…
Do you ever sit there and wonder, how did we end up here? I do, regularly.
When I was 14, I had my life mapped out for me. I was going to be a doctor, specialising in neurosurgery. The brain fascinated me, with all it’s intricacies. I didn’t realise, however, that neurology, medicine and surgery would be the thing that changed the entire course of my education, and indeed my life.
At 15, I started suffering with back pain. Nothing major, my GP told me, and so I just kept going as I did. The bullying started that same year. This was 2004/5, when mental health was still a taboo that ‘would ruin my career’ if it ended up on my ‘permanent record’. Has anyone even seen that proverbial permanent record? I, for one, have not.
Me, aged 15 in 2005, with my friend Aminder, who is now a doctor specialising in experimental treatments for cancer.
I missed the six months up to my GCSEs because I couldn’t walk into the building without having a panic attack. I was in daily pain, I was stressed, sad… and so I just did the best I could. Surprisingly, I walked away with an A*, 3 As, 7 Bs and a C (only because I sat last that exam a year early and so they submitted us for the foundation paper to boost their numbers!).
As soon as I got the chance to get away, I ran and ran, ending up working for a national health and beauty brand. Within two weeks, I was headhunted into a pharmacy job, which I did for 7 years. During those years, a lot of things happened. I left home, I took my level 2 NVQs in Pharmacy Practice, I had a baby, got married, left my husband, and moved house four times. I also freelanced as a copywriter, editor and virtual assistant in the background, because money was always tight.
Then one day, I was 24, divorced, a single mother, still in daily pain from doing a job that involved standing up constantly, and I decided to change path entirely. I went back to college and did an adult access course for allied health professionals which I passed with flying colours. I was told my grades would have been the A level equivalent of AAB! I got into university at Newcastle, to study Speech and Language Sciences.
Behind the scenes, my son was having a whole host of problems. He was almost four, didn’t talk, still in nappies with no awareness of his bodily functions, and he slept a maximum of four hours a night. It was a standing joke in university that ‘Margaret Thatcher ran a country on four hours sleep, why can’t I?’ He was also suffering significant respiratory problems, which meant 8-12 hospital admissions a year. It was a lot for me, on my own, to deal with.
In February 2016, it just all got too much. I quit my job, stopped freelancing, put my studies on hold, and within two weeks I was also a permanent crutch user due to my health issues. It’s like everything landed on me at once. Before I got my disability benefits I had £680 a month to pay for everything. I could barely cover my bills, never mind feed us and clothe us. Too proud to ask for help, things were not good.
It was later that year that things began to change. I saw a different paediatrician for my son, who referred him to be assessed for Autism Spectrum Disorder. I saw a different GP for myself, who sent me for pelvic X-rays. Within 18 months, Jack had his Autism diagnosis, which opened up a whole load of support for us; I had undergone two of three surgeries to correct Bilateral Developmental Dysplasia of the Hip; and I had started dating a man who I’d known for years, who wasn’t put off by the carnage that my life had become.
Getting discharged from hospital after my last surgery
Now it is 2021, and I am no longer disabled. There. I said it. I am not disabled anymore. I still have a few limitations (can’t walk far and some weakness in the leg), but I expect these will be resolved very soon.
From my experience with a decade of disability, as well as supporting a disabled child, I have learned so much. I have learned the power of advocacy, and the strength that one can draw from having the right support. I have learned the inner workings of the Education, Health and Care Plan, and how to complete disability benefit forms so that the assessor can hear you properly through the page. I’ve learned the struggles that the disabled community suffer every single day. I’ve lived through near-poverty. And now it is my mission to help others.
I have returned to freelancing and I am currently earning my keep as a virtual assistant, with planned expansion over the next 12 months. I am also Chair of the Board of Trustees at The Jack Ward Inclusion Initiative, and Chief Executive to boot. This pet project of mine, named after my son, focuses on supporting children and families impacted by disability, families impacted by poverty, and women impacted by domestic abuse and domestic violence. In 2020, despite the pandemic raging around us, I led a team that supported a range of people across Northumberland (and in some cases, much further afield) by
- delivering over 200 hours of 1:1 peer support
- starting a mentorship programme for people who, like me, have found their lives derailed and need help to find their way back
- delivering 60 activity packs to disabled children and their families
- delivering 50 adult parent/carer care packages
- assisting in the operation which delivered 4000 packed lunches over the course of October half term, to families where their children would otherwise have gone without
- delivering ‘Christmas’ to four families for whom Christmas would have been cancelled. This included food, gifts and more
- starting the Surgical Hip Support Community to support people who, like me, have surgical lower limb conditions, helping them to advocate for the right treatment at the right time.
Donuts to go out with care packages to families in the area
And so, that’s how I ended up here. I didn’t end up being a doctor. I did, however, end up helping patients in a way I’d never have expected – support and advocacy. I never thought I would be where I am, but I wouldn’t change it, nor would I change the journey.