Dare to dream: living a full life despite a debilitating illness

Dare to dream: living a full life despite a debilitating illness

Before my illness, I was happy and healthy. I started to feel unwell in 2016 when I was 13 years old. My cognitive skills deteriorated, my physical health deteriorated, and I needed support to walk. I became incontinent, and soon I had all my abilities taken away from me.

I had to leave school as it wasn’t safe for me due to my sudden deterioration. Within a few days, I lost my ability to walk and talk. I was rushed to the hospital for testing, where I spent four months on a children’s neurological ward. The doctors were baffled by my mystery illness and filmed my case for medical research for universities around the world. They said I had an unknown disorder.

I struggle to remember the early days of my illness, and life before it is a blur. While in the hospital, I had many visitors and get-well-soon cards. At times, my illness was mislabelled as other conditions, such as autism and various psychological disorders.

The doctors thought I might have MND (Motor Neurone Disease). I had many scans, tests and medical procedures, but everything came back normal. After months of unanswered questions, I was finally given a diagnosis of Functional Neurological Disorder, also known as FND. A few weeks after my diagnosis, I was discharged as there was no cure and nothing more could be done.

Once I left the hospital, I was given a wheelchair, hospital bed, toilet chair, hoist, posture chair, hand splints and other types of equipment. At least 20 professionals from across services were involved in my care.

Trapped in my body

FND struck again, leaving me unable to sit up.

Within a few weeks, I lost my ability to sit up. I was given a specialist wheelchair; however, due to my deteriorating posture, this didn’t last long. For six months, my brain was very poorly; it was like my mind had switched off. I didn’t know who or what anything was. It was like my mind went completely blank.

Eventually, my brain functioning improved, and I could understand what was happening. For a few months, I attended a special school, but this wasn’t suitable for me as they didn’t know how to look after me; they had never come across someone who had FND.

The staff thought my illness was a psychological one, and at times, I would hear whispering saying things like “it’s all in his head”.

That language is completely reprehensible and unforgivable. At the time those words were said, I wasn’t able to speak up or defend myself because I was non-verbal, but I would never allow that to be said now. My body was getting worse, and I had to be in a lying-down position. In the end, I had to leave as it wasn’t safe for me due to my deteriorating posture.

My body continued to deteriorate, and during this time, I was also diagnosed with catatonia and dystonia. Every time I was transferred to different types of equipment, my head would be on my knees. My body couldn’t tolerate being in an upright position. It got to the point where my body couldn’t tolerate being on any form of equipment apart from my hospital bed.

Bed-bound for three years

The only place I felt comfortable was on my bed. I was then bed-bound. I was bedridden for three years, and I felt trapped inside my own body. It was like being awake inside a body that had stopped working. I couldn’t do anything for myself and needed 24-hour care. A specialist team from Great Ormond Street Hospital, London, saw me.

Over the years, I’ve been supported by many different professionals, including neurologists, psychologists, psychiatrists, paediatricians, occupational therapists and physiotherapists. The Child and Adolescent Mental Health Services (CAMHS) were involved too.

For a year, I couldn’t talk, but with determination, my life began to change for the better. My words slowly came back. I had support from speech and language therapy, and then eventually my voice fully recovered. But I then developed selective mutism and could only speak to my parents. The selective mutism lasted about four months, then it went away, and I could speak to everyone again.

A dream to visit London

When bedridden, I found comfort in two things that would later play a role in my rehabilitation journey: London and the British ITV talk show Loose Women. It was my dream to visit London and meet the Loose Women, but because of my FND, I wasn’t well enough to go.

CAMHS and the specialist team from Great Ormond Street created a progress chart for me to help motivate me to achieve my dreams. If I moved my arm or a finger, I would get a point, so that would mean I am one step closer to achieving my wishes.

After three long years, my FND started to improve. My body didn’t feel so stiff anymore, and I was learning how to move my arms again.

Within a few months, I learned how to move my arms again. It was still difficult for me to move them, but at least I now had movement in my arms.

Learning to sit up

A few months later, I slowly learned how to sit up again. I woke up one morning, and my back didn’t feel so locked/stiff anymore. I was transferred to the specialist tilt in space chair, and my head was slightly off my knees, only by a little bit, but that was a huge achievement.

Every day, for 10 minutes, I was transferred to the chair, as my body could only tolerate sitting for that long; then I had to return to my bed. Sitting on the chair for 10 minutes was a huge milestone, as before I couldn’t even tolerate sitting on anything for one second. After many months, my body slowly improved, and I was now able to tolerate sitting upright.

Learning to live with FND

I was given a new wheelchair. My first outing in years was to collect my new wheelchair from the hospital. The outing was only to the hospital, but to me it felt like a whole new world waiting to be explored. I felt freedom at last after being bedridden. Tasting freedom after being trapped inside my own body, this was my new life, learning to live with FND.

When I was well enough, I achieved my dream of visiting London and meeting the cast of Loose Women. I’ve been back many times since to my favourite place, London. I’ve met 15 Loose Women. Meeting them gave me the courage to dream bigger and to believe that anything is possible. My next wish is to visit Cyprus.

Ten years on, I’m raising awareness about FND

When I was a child, I acquired a life-changing disability that would have a major impact on my life for years to come. I went from being a healthy 13-year-old to one who couldn’t move or even speak. FND took my speech and mobility, then placed me in a wheelchair, causing me to become bedridden and trapped inside my body. But from somewhere, I found strength and resilience to fight through my debilitating symptoms.

I refused to give up. With support, hope and determination, I slowly began to regain some of my abilities.

It’s been almost a decade since my life changed, and I’m proud to say I’m learning to walk again. It’s a challenging journey, but I’m determined to live life to the fullest. I’ve discovered a new purpose in raising awareness about FND.

My condition may have taken away my mobility and speech, but now it’s also given me a voice to speak up about FND. I’m grateful for the progress I’ve made and excited for what’s to come.

I am Liam Virgo, and I’m not letting my FND define me – I’m living life on my own terms.