When Cherilyn Fox speaks, teenagers listen. Cherilyn’s mission is the prevention of alcohol and drug related trauma in youth. When she tells her story to a group of 200 kids all eager to get their driver’s license and hit the road, she says you could hear a pin drop. Sharing images of the car accident scene where she had to be resuscitated several times, and hearing about her multiple injuries, including a severed femoral artery (the main artery supplying blood to the leg), requiring a thigh high left leg amputation, tends to leave her listeners speechless.
“I tell them I was out drinking with a friend one second and the next I woke up with both my parents there, and I thought this is either a dream or something really bad has happened,” says Cherilyn, whose memory of the following months she describes as ‘blurry.’ “I want younger people to take home the message it could happen to any one of them and none of us are invincible.” Cherilyn describes sharing her story and seeing it’s impact on young people as “such a healing experience. It’s what keeps me going,” she says. “If my story helps to save just one life, I have had the impact I wanted.”
As well as her amputation, Cherilyn experienced a smashed pelvis and hip fractures, collapsed lungs, a perforated bowel requiring surgery to create a stoma (colostomy), a ruptured bladder requiring a temporary urinary catheter, and many other injuries. Medical staff assumed she would also have major brain damage from the loss of blood and oxygen to her brain. “The scores I have against the injuries I sustained are at the highest levels without actually passing away that the trauma team had seen,” says Cherilyn. “The numbers scored against my injuries were up around 50/75. On average, people don't generally survive if the score is around 18/75. This is why the hospital team are so shocked I am the way I am today and that I actually made it through.”
Cherilyn’s recovery still took and will continue to take time, not to mention constant adjustment. “Waking up on my 30th birthday to a wet bed when I was working on retraining my bladder was very different to my 29th birthday,” says Cherilyn, who experienced incontinence until her bladder was able to recover following the repair to the damage it sustained. Her stoma has also now been reversed and she no longer needs a stoma bag. She says, “fifteen months down the track, everything seems to now be recovering quite well which is awesome!”
After an extensive time in hospital and rehabilitation, Cherilyn was able to move into her own apartment with the support of her family. Initially she had carers to assist her but found it stressful having strangers in her home. She describes herself as fairly self-sufficient now and has a cleaner who comes once a week and does the areas she can’t manage.
Acquiring a disability in adult life brings with it a whole lot of new and confronting challenges. Navigating a less abled life means every action and intention requires a series of well-thought-out steps. Crossing from the world of ableism, which discriminates in favour of able-bodied people, to negotiating the world as a person with a disability means spontaneity and impulse become like lost old friends.
It's like we all live our lives on autopilot until something like this happens and we realise how much we have formerly taken for granted. “Something as simple as taking my rubbish out requires negotiating my heavy front door and manoeuvring through a small, tight space,” says Cherilyn. “I can’t just pick it up and go. You need a thought process for everything! Cooking and hanging out washing from a seated position are really hard. These are all the things I never thought about. Independence is something I so took for granted. We don’t stop to appreciate oh my god I can walk, or I don’t need help to go to the toilet or shower and I can just duck to the shops to get milk and I don’t really have to think about it.”
Having a noticeable physical disability can also attract a lot of unwanted attention. “What I struggle the most with is people staring at me when I’m out in public,” says Cherilyn. “Kids don’t bother me at all, but the glare from adults can be full on. I want to say, ‘leave me alone, I’m not in the circus!’ I get asked all sorts of crazy and very personal questions,” she says.
Whilst acknowledging she has her ‘dark’ days, Cherilyn focuses mostly on the opportunities that have come her way since the accident. This includes meeting and collaborating with Anja Christoffersen, founder of the Health Champion Movement, which empowers people with disability, and chronic illness to have a voice. “I love what she does and how she gets behind people. We work well together, and Anja is so supportive,” says Cherilyn. “When I was in hospital, I couldn’t find anyone who’d been through what I had and posted about it. I want to be that voice and the person people can reach out to.”
Represented by Champion Health Agency, Cherilyn spoke at the Sydney Disability Expo in August 2020 on Changing perceptions around disability: a perspective of someone with a newly acquired disability. She says, “while life has been incredibly difficult over the last year and a half, I have had some truly amazing opportunities like this!”
It has been almost two years since the crash and Cherilyn’s approach to life is a testament to the fact that while we can’t always choose what happens to us, we can choose how we respond to it. Her infectious laugh, beautiful smile and sense of humour belie what has obviously been a massive impact on her life as she formerly knew it. Whilst she says there are definitely very dark days, something that is striking about Cherilyn is her strong sense of self and purpose. She says she just tries to get on with life and the belief she can do anything. “My brother says, you’re so independent I forget you have a disability. I was dead on arrival at the hospital on the 9 January, and I was driving and living on my own in August,” she says.
“It has definitely been a big change that took a lot of getting used to and continues to be. I still face more surgeries, so I’ll be going through more challenges and recovery for a number of years yet,” she says. She also experiences ongoing pain, requiring multiple pain medications which make her constipated, so she often needs to take laxatives.
Cherilyn will next undergo osseointegration, where an artificial implant is surgically attached and integrated into her bone, which can then be attached directly to a prosthesis such as an artificial limb. “My recovery will be ongoing for the rest of my life,” she says. “If I go through osseointegration (most likely option), I will have to have surgeries every two years for the rest of my life.” Clearly there is still a long way to go.
Navigating her daily life with a disability has uncovered a whole new world of issues Cherilyn previously never had to think about. She wants to see improved accessibility to public toilets and removal of the barriers and obstacles. “I’m really passionate about creating change and shocked by what I’ve experienced since I’ve been out of hospital. I’m blown away by what I’ve seen with the state of public toilets and the lack of disabled access and facilities,” she says. “I live in a country town which has extremely poor accessibility for disabled people. There are things I would never have thought of before my accident, like when people just leave a supermarket trolley in the middle of a walkway. I can’t go around it. I need to move the trolley as it’s blocking my path.”
“Recently I was at a soccer game and the only public toilets available were the standard male/female ones. I had just had my stoma reversed so I wasn’t always sure when I needed to go to the toilet, and it came on suddenly. Luckily, I had my Mum with me, and I still have my right leg, so I was able to get up and hop to these toilets, holding on to the doors on the way. If I wasn’t able to do that, I would have had an accident and it makes me think if I couldn’t weight bear on my right leg, I wouldn’t have made it and then I also wouldn’t have had anywhere to clean myself up. It’s really quite scary.”
This is yet another example of the huge challenge of having been an able-bodied person suddenly having to negotiate life with an acquired disability. “If I’m driving and I suddenly need to go to the toilet, firstly I have to find an accessible one, then park my car, which needs to be on a flat part of the footpath, then get my wheelchair out and assemble it. I can’t just get up and go. I’m lucky I still have the strength of my right leg to balance on if I’ve got other people there but going to the toilet is just something you don’t really want help with,” she says.
“I’m really passionate about creating change out in public because I think of other people who don’t have the movement that I have and have to depend on carers and all that extra help. So, if facilities could be more accessible to have that little more independence, it could make a big difference to so many people’s lives,” she says.
Cherilyn also wants to raise awareness so that people better respect accessible public toilet spaces and think about the next person who might need to use them, especially someone who is disabled. “When we’re out and about, sometimes we don’t have any other options but to use the only accessible public toilet,” she says. “If someone else has left a mess all over the seat, I have to clean that up because I cannot squat over a toilet. In so many places, like service stations and park grounds, there is generally only one accessible public toilet, and in my experience, nine times out of ten there is something wrong with them. Either the toilet is clogged or trashed, the lock on the door is broken, or there is water everywhere and we could easily slip and experience further injuries. Please, respect these public spaces for everyone to access.”
Cherilyn and her partner love four-wheel driving and the outdoors, but she finds this difficult to access at the moment. “One of my big goals is to get on the road and be able to go around Australia and different camp sites and have a map where we have a rating system on the facilities, so people know which ones are accessible and what the level of accessibility is, and what types of mobility aids can be used in that area,” she says. “The National Public Toilet Map is excellent, but I’d like to see better signage for public toilets, more information about ambulant facilities, and whether there is a table to change your stoma bag, as some key examples.”
In response to the question of where her drive and strength come from, Cherilyn says “once I wake up in the morning, I’m in a fair bit of pain so I have to get up and move to ease it and take my pain meds. So, that’s what gets me out of bed!” she jokes. But seriously, “I love sharing my story with school kids who are about to get their driver’s license, think they’re invincible and have the attitude ‘that won’t happen to me,’” she says. “I love being a part of something bigger. This accident has made me realise that before I was so self-centered and the small things seemed so big. When I talk to those kids, if I touch a nerve or make them realise they are not invincible and this could happen to any one of them, then I’ve achieved my goal.”
Cherilyn wants to continue educating on prevention as well as supporting those in need. “I would love to be able to go into hospitals and talk to people who are going through what I’ve already been through,” she says. “Helping is very healing for me. That is where I get the strength to keep going…and my nephews, they’re beautiful and I want them to see that you can do anything. I believe what you can think of you can do. I definitely have a much stronger passion than I did before. Knowing it is possible and I can help is really cool.”
The quote on Cherilyn’s Instagram account pretty much sums it up - “If you don’t fight for what you want then don’t cry for what you lost.”
Cherilyn would like to acknowledge the P.A.R.T.Y (Prevention of Alcohol and Risk related Trauma in Youth) program which she was introduced to while she was in hospital. P.A.R.T.Y Program Coordinator, Nardine Johnson, was present in Cherilyn’s family meeting within the first couple of days after the accident, advising her family of the extent of her injuries. “P.A.R.T.Y have been a massive part of my healing journey. I’m not sure just where I’d be without them,” says Cherilyn. “Nardine has been there with me since day one and it’s an absolute pleasure to be working with her having an amazing impact on these young adults’ lives.”
For more information go to PARTY Program - Canberra Health Services (act.gov.au)