In December 2020, Holly was diagnosed with Transverse Myelitis, a rare inflammatory disease, causing injury to the spinal cord resulting in varying degrees of paraplegia, weakness and sensory alterations. At the time, Holly was 39 with a partner and two sons, aged 15 & 5.

Before my injury, I had a hectic work and home life trying to maintain my business, running a home and ferrying my kids to their various activities. All of that changed overnight.

I didn’t have an accident, fall or traumatic injury. Absolutely nothing happened. 16^th December 2020 was a very normal day. I went to work as normal and afterwards did some Christmas shopping before getting home around 7pm.  

That evening I was on the phone to my best friend Jane and realised I had pins and needles down my left leg that didn’t go away.  At the time we joked that I’d been sitting down chatting for too long. I tried walking around to shake it off, but the strange feeling didn’t go. I went to bed but when I woke up I realised the numb feeling had gone to both legs and I couldn’t feel anything from the waist down. I had no sensation in my pelvis, legs or feet. I tried to get out of bed and fell straight to the floor.

Ralph helped me to the bathroom and we called the GP. I don’t know why we didn’t call an ambulance, I think we just assumed it was a trapped nerve. The GP rang an ambulance immediately.

Because of Covid restrictions, I had to go to hospital alone. It was hours before I was seen and I began to get more worried. A nurse eventually told me that I was being transferred to Kings College hospital. It had taken them so long to get to me that the MRI machine at the local hospital had closed for the day. It was past midnight at this point.  At the hospital I was met by a consultant who explained that I may need emergency surgery. They tested my nerves and reflexes and the conversation changed back to needing the MRI scan which I had around 3am. Eventually, they ruled out a stroke and spinal cord compression and decided I didn’t need surgery. Five days later, after many consultants had looked at my MRI images and lumbar puncture results, I was diagnosed with Transverse Myelitis.

After my diagnosis, I remember being alone, paralysed, and absolutely terrified.

What did this mean? Ralph couldn’t be with me due to the Covid restrictions. A senior neurologist came to see me and sat on my bed and took my hand. She said that she was there to help me understand what was happening as they didn’t think I understood the severity of the situation. She explained that I wasn’t going home, I wouldn’t be working for a while and it was far more than a trapped nerve. I had to hear this news alone.

I was terrified for everybody else around me. What does this mean for my children, my staff? What does life look like as a paraplegic? So many questions. I was just 39, I couldn’t comprehend that I was being told I had a spinal injury and would now be disabled, and that I might not walk again.

There was a big part of me that didn’t accept it for a long time. Then, when the reality of potentially not walking again set in, there were a lot of whys and SO MUCH ANGER. I thought why me? Why now? But today I think, why not me? Why not now?

Life throws you these challenges, and you deal with what’s in front of you at that time. I am only 10 months into this from a life-changing overnight shock. I feel like things are settling down, but I currently find myself in a strange place of knowing I need to accept what has happened but not quite being able to yet.

This happening during the pandemic made it much harder and more complicated. I couldn’t have anyone at the hospital to support me.  I couldn’t see my family and the lockdown prevented anyone going to our house to help Ralph with the boys. People went above and beyond to help out and the support kicked in very quickly. Our house looked like a florist, friends and neighbours dropped round meals and treats for the kids and shopping was left at the front door.  People really are so kind.

When I was diagnosed my work life inevitably had to change for a few months, but I’m pleased that I have continued to keep the business going throughout it all.  During lockdown, my work with choirs had moved onto Zoom, so I continued to run them, just sitting instead of standing. I told people about my injury on a need-to-know basis. I just wanted to get on and have something in my life that still felt “normal”. 

You deal with what is in front of you at any given moment. But hindsight is a wonderful thing.  Looking back at that time 10 months on, I can appreciate how terribly hard that time in hospital was; weeks in hospital, over Christmas, my 40th birthday, a pandemic, a national lockdown, no visitors and not being able to see my kids. Wow, that was tough.

But knowing what I needed to achieve to be allowed home gave me a focus to make progress. They said I could go home if I was able to climb a flight of stairs safely, regardless of how long it took me. I knew I needed to get home to my boys and so I became determined to climb those stairs without falling. I took forever but I did it. I was discharged in January in a wheelchair with other mobility aids. I didn’t want to go to the live-in neuro rehab facility for three months. By that time, I had not seen my children for over three weeks and I needed to get home. I needed their support for the ongoing recovery that was to take place. 

I heard about Aspire by chance

A family friend who had a spinal cord injury contacted me to offer support.  We spoke about my concern about the lack of support since I was discharged and how there was no way I could afford the ongoing expensive private neuro physio sessions I needed, as well as all the other things that might be coming my way; car adaptations, house modifications, bladder and bowel support, reflexology, electro muscle stimulator machine etc – the list goes on and on.  I couldn’t believe that after the six weeks of community physio I was on my own!  I’d never imagined that my recovery would be my responsibility – everything is so very expensive. I was losing sleep over how we would manage to afford the care I so desperately needed.  Andy gave me lots of advice and information on charities I could contact for some support. Aspire was on his list and I immediately got in touch.

The advice I received from the team was invaluable, total gold. To talk to people that are so knowledgeable about how it all works, not just the benefits system but spinal injuries too was just fantastic. When you are someone, like me, who had absolutely no knowledge, it was a huge relief. My contact with Aspire has allowed me to access lots of support, financial and otherwise, that I wouldn’t have known about without them.  

Without Aspire I wouldn’t have answered the questions on the PIP application correctly or with the right vocabulary, and I doubt I would have received the same decision. I have been so grateful for all the check-ins during the whole process, ringing and emailing to see how I was getting on. I was really impressed that when I finally got the successful PIP decision, Aspire’s reply was “Can you send us over the documentation so we can check the correct decision was made for you.”  I thought, “I’m so grateful this place just wants to help.”  Up until that point, it wasn’t what I had experienced.

Having gone through this process, it can often be the case that you are fighting against things, hitting barriers and facing one problem after another.  It can be a very lonely place, so to know that there is a supportive and knowledgeable team you can contact is such a comfort.  The service has been a real lifeline for me. The support has just been brilliant.

The PIP money covers both my weekly neuro physio sessions. I can now afford an hour per week thanks to the PIP award. This treatment works well for me and helps me manage day to day.

I want to continue working as much as possible and give back. I would love to be a mentor to support others in a similar situation. I’d love to raise money for charities that support people with spinal injuries and bring awareness to the condition. I want to make sure people are aware of Aspire and other spinal injury charities so everyone can access this support.

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