But you don't look disabled..

Wheelchairs have an instant association with disability, but what if your spinal cord injury (SCI) is a hidden one? How does this affect the general public’s perception of your SCI and crucially, your access to services.

Here Ted Reddick and Bizzie Frost share their stories…

Judgement, battle and a determination to help others

The additional scrutiny those with hidden disabilities are subject to is a reality. However, the hope is that by raising awareness we can help educate and effect meaningful change

While on holiday in Japan in 2018, Hampshire businessman Ted Reddick developed transverse myelitis (TM), a rare neurological condition that left him paralysed from the neck down. Prior to onset, Ted was fit and active – he enjoyed playing racquet sports regularly and cycled extensively. Thanks to immediate diagnosis and intensive neurological rehabilitation, his condition improved considerably and he regained movement. But some aspects of life remain seriously compromised by possible irrecoverable damage.

Ted, now 60, can walk but returning to some semblance of a normal life has been extremely hard and one major frustration has
been the attitude of others – including medical professionals and governing bodies. He explains:

“The battle to retain my blue badge is a classic example. Evidencing my disability was futile – my GP has no knowledge of TM, and I was signed off by my neurologist as there is no further treatment other than continued physiotherapy. In the real world, I cannot get in or out of a car unless the door is open fully, and standing up is fraught with difficulty. Walking is extremely difficult, painful and exhausting. I have to self-catheterise five or six times a day, and that means using disabled toilet facilities when I’m away from home. You certainly get the feeling that some people are judging you when you use them!

“The additional scrutiny those with hidden disabilities are subject to is a reality. However, the hope is that by raising awareness we can help educate and effect meaningful change.”

Ted lives with fatigue, impaired mobility, bladder/bowel issues – but the most enduring reminder is the excruciating, intense neuro pain from active muscle groups, which doesn’t let up. The relentless pain has been by far the most difficult aspect of his SCI to deal with. For Ted, access to rehabilitation was paramount. But he acknowledged that others may not have the resources to access intensive therapy and founded Challenge TM to help. Through cycling challenges, including summiting Mont Ventoux, he has raised more than £45,000 to date to help fund treatment for others. He says:

“I was lucky when I was struck down that it was in a place where this rare and easily misdiagnosed condition was recognised and treated quickly. Others may not be so lucky and without fast and effective help it can have serious, long-lasting effects.”

For more information visit the Challenge – TM website

From wheelchair-walker to Harley Davidson

Author Bizzie Frost regained some ability to walk after a spinal cord injury but felt this meant her condition was never considered ‘serious’.

Here she shares how her experience led to an unforgettable journey – and a book!

“My life was turned upside down on Sunday, 10 January 1999 when I woke from spinal surgery to find I was paralysed down my right side. Back then we were living in Jeddah, Saudi Arabia, and the neurosurgeon had promised I’d be out of hospital soon. Instead, after three weeks in hospital, I found myself in a rehabilitation centre.

“Everything about my condition was rare, starting with the massive, herniated disc at T8/9 and the resulting Brown-Séquard syndrome. It was hard fathoming the sensations coming from my legs: a left that could move normally but couldn’t feel pain, heat or cold, and a right that couldn’t move and had no proprioception that did feel those things.

“When I tried standing, the foot on my ‘good’ left leg couldn’t feel the floor, but the foot on my paralysed leg could. I had to rely on the sensations coming from one foot to tell me what was going on with the other.

“Rehab in the strict, gender-segregated and religious Saudi environment was very different to centres in the UK like the Royal National Orthopaedic Hospital, which I’d attend later. Wheelchair skills sessions and leisure activities were only for male patients. Non-medical rehab for women was a session in the kitchen learning to make samosas – because in the Saudi environment, that’s where women belonged.

I had been determined not to use a wheelchair, but when I eventually did while out shopping to save time and energy, it was a relief finding people didn’t ask questions. They seemed to accept that whatever had happened was ‘serious’ and asking would be intrusive.

“Weeks went by, and I slowly relearned how to walk; first with a Zimmer, then with crutches, and finally with a single walking stick. As a walker, I’ve found that random people felt it was okay to stop me – in supermarkets, shops, or on the street – and ask, ‘What’s happened to you then?’ When I was using crutches, they assumed my ‘injury’ was temporary – like from a skiing accident. Once I was using a single walking stick, they’d say, ‘But you’re far too young to be using a stick?’

“I had been determined not to use a wheelchair, but when I eventually did while out shopping to save time and energy, it was a relief finding people didn’t ask these questions. They seemed to accept that whatever had happened was ‘serious’ and asking would be intrusive.

“It took years to get over my loss of inclusion in sporting activities. I used to play tennis, go for long walks at weekends, or play golf with my husband Richard. I had to find a new ‘me’ that wasn’t the ‘me’ I knew. I felt adventure had been ripped from me and I was a tag-along, disabled wife.

 

“When Richard suggested we buy a Harley-Davidson motorcycle, I thought his idea was crazy. Then a friend invited us to join him on a 2,500 km ride from Jeddah to Muscat, Oman. I couldn’t resist the opportunity to ride across the Central Arabian Desert on a Harley, and so we bought our customised Road King. We called it ‘Maridadi’, meaning ‘beautiful’ in Swahili and it brought the thrill of danger and adventure back into my life. We spent the next 10 years exploring Saudi on our  Harley, as well as the UAE, Egypt and other places.”

 

 

Bizzie’s book ‘Travels with Maridadi: Harley Davidson adventures in Saudi Arabia’ is available to buy at Waterstones, WH Smith and through Amazon.

Further information

This story appeared in the Summer 2023 issue of our magazine FORWARD. If you would like to receive regular copies of FORWARD by post or email, visit our shop to subscribe.