For a lot of people, 2020 was the year that their world was on hold. For me, this was the year that I decided to take the plunge and do something that I thought would define the rest of my life.
After being made redundant in the midst of the pandemic, I knew that this was the time to fulfil a childhood dream of becoming a teacher. Primary school was such a safe space for me; the place I could be creative without fear of being judged and to get some peace from my three brothers for a bit. I always wanted to create a safe space in my classroom one day and emulate those inspiring teachers I had throughout the years.
In May 2020, I was accepted onto the PGCE Primary programme at the University of Chester. I was so excited that I was making strides towards my dream career. Just before the May half term in 2021, everything that I had worked so hard for came to fruition. I got offered a job as a Key Stage One teacher at a primary school in Cheshire West. To say that I was over the moon was an understatement. Getting to see my first classroom after accepting the job offer, I felt like I was finally going to be living and working to my true purpose: to teach and inspire the next generation of bright little minds. The opportunities that were in my grasp filled me with excitement to be able to reach those that needed not just education, but the nurture and the creativity that I knew I could provide. Before I even got the chance to complete my first year of teaching, my life changed overnight.
In January 2022, I came down with COVID & viral Meningitis, leaving me bedridden for two weeks. After starting to feel better, a plan was put in place for my gradual return to work and I couldn’t wait to be back with my class. Unfortunately, this plan never took place.
February 8th 2022 was the day my life changed. I was found collapsed in my flat by my neighbour, barely conscious with the left side of my body numb, face drooped and slurring words. She had found my phone with three previous calls to 999. Four hours later, there was still no ambulance. My neighbours had to drive me as quickly as they could to A&E and I was immediately taken to resus for emergency scans. Everything was a blur. Hearing the muffled words of “possible stroke”, “brain bleed” and “she’s not responding” whilst paralysed in my body. I was in hospital for two weeks unable to walk unaided and in extreme pain with no visitors due to COVID, it was one of the most petrifying experiences of my life. Test after test, scan after scan and still no answers until I finally got a diagnosis. A rare neurological condition called Idiopathic Intracranial Hypertension or IIH for short. It’s a condition where there is too much cerebral fluid that puts pressure on my brain, causing symptoms that mimic a brain tumour. With warnings of what to do if I got worse and medication provided, I was sent home and told to expect an outpatient appointment in the next couple of weeks.
So I waited. One month, nothing. Six weeks, nothing. Two months, nothing. My parents rang the hospital to see if there was any update on getting the outpatient appointment. They were met with the words: “you are looking at an appointment earliest in November.” It was now April. I wanted to get the answers I deserved, I wanted to get better and go back to teaching my lovely class I had grown attached to and back to normal life. My assumption of being off work for a couple of months was shattered, having to share that news with my boss was soul destroying, and the realisation that teaching wouldn’t be an option for me with my current class broke my heart. I was in so much pain, so alone and wondering what was going to happen to me.
My GP was fighting for me to be seen by the hospital and for any services to help me through this massive life transition to be met with responses of “just go to A&E if you feel worse because we can’t do anything. There are no services available to Sarah due to her age.” During 2022, I ended up in A&E 12 times: twice being admitted, three times going to resus and on one visit having to wait 18 hours on a bed in a corridor to be dismissed by a A&E doctor after spending five whole minutes with me. I was left having to chase services for appointments despite how ill I was, my parents were chasing for anyone to see me but were met with silence. My friends tried their best to help, but I continued to push them away so they wouldn’t see me so unwell.
I felt so unbelievably trapped. Trapped in a body I didn’t recognise as my own, unable to do even the everyday things I used to do and became reliant on mobility aids. Trapped in my flat, not being able to go anywhere alone. Trapped in my pain. Trapped in my new limbo of life, not knowing what my future was going to be like. Trapped in my brain. Trapped in my thoughts. Just trapped. With no NHS medical support coming from anywhere to help me in my situation, I regressed. The feeling of failure and grief from my old life was suffocating me. I felt forgotten about, alone and unworthy. I was imprisoned in a life I didn’t want and felt like I didn’t matter, just that woman that people would roll their eyes at seeing me in A&E again. I stopped telling people when I went to A&E. I became a recluse. Someone who was once so excited to celebrate turning 30, dreaming of being surrounded by my friends and family became someone who turned 30 in my flat, curtains closed, phone switched off, wanting to be alone. My brain was spiralling and I used self-destructive ways to try and numb my mental and physical pain. I didn’t want to be here anymore feeling like this. Feeling alone. Feeling like I have no medical support.
Things started to turn a corner when I finally met my occupational therapist. It had taken four months to get someone specifically assigned to me as a medical professional other than my GP. She asked me how I was and said that it must’ve been an incredibly tough few months and did I want to talk about it. I broke down. I cried hysterically for 10 minutes straight talking about the loneliness, the pain, the grief, all of it. She did such an important thing for me that day: she validated my experience and acknowledged the life-changing difficulties I had been experiencing over the last few months. Being barraged with negative comments in the past from doctors to strangers, I was getting beaten down. I had started believing the negative thoughts that were ignited from those comments. Getting that person’s support that day with them being able to signpost me to services and having someone that showed me that I mattered and wasn’t just a number in a queue on a database helped me see that I was valid. She rang for check ins even when we didn’t have an appointment. She helped me find ways to make tasks easier adapted to my needs and my new mobility aids. She made me feel safer around new health professionals and taught me to stand my ground in appointments.
A year on a lot of my life is the same. I still use mobility aids. I still have to chase medical appointments and referrals. I am still chasing the benefits that I’m owed and still awaiting assessment after months of waiting. I grieve my old life every day. I am still disabled. But a lot has changed. In July 2022 after fighting for an earlier outpatient appointment for months, I finally got it and a further diagnosis of Functional Neurological Disorder. I finally got to see my class on the last week of summer term for a fun afternoon. They got introduced to my walking stick and we talked about why I need it for my “poorly leg” so I don’t fall over and the importance of it. One of the children called it “Miss Sarah’s Rainbow Stick of Light” and was guarding my walking stick, making sure no one would touch it. I got to go to my graduation in my wheelchair, feeling unbelievably proud of achieving my PGCE. I finally fond a new place of belonging with the Community Inspirers and Poverty Truth Facilitators, who made me feel seen from the get go.
Thinking about my old life too much hurts like it was taken away only yesterday. I miss my independence, my job, my spontaneous trips and nights out with friends, being able to travel and some thing as simple as going out without help. But I believe things happen for a reason. I know that I have a purpose. It’s not just to teach and inspire the next generation of bright little minds: it’s to tell my story to teach everyone that no one should ever be left to feel alone and in the dark about the next steps after a hospital stay. It’s to remind people that just because someone doesn’t fit the stereotype of a disabled person to remember that disabilities aren’t always visible, it doesn’t matter a person’s age or outward appearance they are still disabled. Everyone deserves to have access to the support that they desperately need. It’s to remind people that their words matter whether you are a teenager trying to look funny in front of your friends or an A&E doctor, who doesn’t believe a medical condition is real. Your words could impact someone who is trying their best to get through the worst day of their life. It’s to say that if a young child can embrace someone who is disabled, so can anyone else. It’s to inspire those that are in a similar position that you are not alone.
Everyone deserves help. Everyone deserves to be treated with respect. Everyone needs to know that disability is the only minority group you can suddenly become a part of. If a family member or a friend of yours has a story of their own disability, you need to listen. You will be surprised by even half of the problems we face every day having to adapt to an inaccessible world. Just take a minute to think…what would you do if this happened to you overnight? How would you feel having to fight to be seen? Where would you turn to if all the options you were given to seek help came to a dead end? Imagine all of this with disability, pain and all the new challenges that we face and ask yourself…how would you have coped in my situation?