When life changes suddenly it can be difficult to adapt and process, but a positive mindset can help the journey of recovery. We speak to quadruple amputee and sepsis survivor Caroline Coster about the power of community after acquiring a disability.
As coronavirus dominated headlines around the world in March, Caroline Coster and her husband, Will, decided to quarantine after they both experienced symptoms of COVID. After a few weeks Will started to get better, but Caroline’s symptoms only worsened as time went on.
With concerns around her having asthma, Caroline was seen to by paramedics who diagnosed her with a chest infection, but after no improvement on antibiotics Caroline’s long-time GP advised her to get to the emergency room.
Caroline arrived at the hospital unaware of how her life was about to change, she remembers: “I had an emotional farewell with my husband in the waiting room and was taken through to a treatment area, I literally can’t remember anything more than that.”
Caroline was rushed to critical care and hooked up to a breathing machine, she remained there for a month in and out of a coma. When she awoke she had little memory of what had happened in the last four weeks.
“I was completely shocked by this and still am that I had missed a whole month,” explains Caroline. “At one point I looked down at my hands and they were completely black, they looked like an Egyptian mummy’s.
“That’s when I found out they would have to amputate my hands and my feet because in the coma I developed sepsis.”
In order to keep vital organs alive, Caroline’s blood had been diverted away from her extremities. As a result, her hands and feet had to be amputated and the tip of her tongue died and fell off.
Although Caroline was in shock, she understood this was necessary to keep her alive, she says: “My reaction was really they’re useless to me and they’re not what made me, me, so let’s just get rid of them.”
Once she found out about the amputations Caroline made peace with the idea, but credits the support from hospital staff and family for her positive reaction. “Everyone expected me to be really upset by it but I can honestly say I wasn’t, and I can only put that down to the support I’ve had,” admits Caroline. “We’ve had such an outpouring of love.”
While Caroline has continually tried to find positives in her new situation, she has also had tough days, she explains: “Obviously I have my down times, I’ve had my days of crying, usually through frustration that I can’t do things for myself, but actually overall, I’m completely at peace with it.
“My family came to say goodbye to me twice in the coma so I just know how lucky I am to be alive, I’m just determined to make the most of all that I have ahead of me.”
Caroline’s amputations were life-saving, allowing her to embrace her new life and continue to spend time with her two daughters, husband and dog, Duke, but she has managed to find other positives, too.
“There’s some slightly silly ones like: I was due to have an operation on my wrist because I had terrible wrist arthritis, it’s no longer a problem; I had terrible bunions on my feet, that’s no longer a problem,” laughs Caroline.
“There’s been other more sensible positives like the outpouring of love from everyone and the support from the hospital, I can’t fault them.”
A teacher by trade, Caroline has received thousands of messages of support from current pupils and those she taught over 20 years ago, their parents and even their grandparents.
As Will struggled to keep everyone updated, Caroline and her family decided to start a Facebook page to document her experience: A Journey of Recovery.
“I’ve always been someone who’s shied away from attention so I’ve found that quite hard being the centre of attention and people saying how wonderful and inspirational I am,” reveals Caroline. “I don’t feel inspirational I just feel blessed.”
Caroline is also an active member of her church who helped to connect people around the world in a prayer chain while she was having her operations, she says: “I believe that’s had a huge part to play and has certainly helped me to feel surrounded by love, so, for me, the prayer support is something that has been amazing.”
At the beginning of her journey Caroline was admitted to Bedford Hospital where she stayed for around eight weeks after her coma and learnt to roll over, sit up, pick things up with her stumps and transfer from bed to chair.
Throughout her journey, Caroline has used the challenges as motivation to keep going. “The frustrations lead me to find out a way of beating that frustration if you like,” she explains.
“I’ve got time to develop my skills again and that’ll be a learning curve; so, it’ll be filled with frustrations, but each frustration will blight me on a bit.”
Now, Caroline has been transferred to Roehampton at Queen Mary’s Hospital for rehabilitation where she will remain until she goes home.
“The real thing I’m looking forward to is being able to stand up and walk, I’m so determined to walk because I can’t go home until I can take steps,” says Caroline.
“When I can get home, my major concern is getting the house in a state where I can be independent, because I want to be independent – I don’t want my husband to be a carer or to have carers in.
“Once I get home I’m hoping to live the best life I can like everyone does: I want to be independent;
“I’ve got plans to register our dog Duke as a Pets as Therapy dog; I’ve already said to the hospital that I’ll be going back there to volunteer.”
Before contracting the coronavirus, volunteering and charity work were a big part of Caroline’s life. She has previously raised around £40,000 to help women in Kenya set up their own businesses and also upcycles old jeans into bags and other creations for charity sales.
Caroline plans to continue with her charity work and has been told she can get special prosthetic hands that allow her to sew again ahead of her next charity sale in November.
In order to make the most of her recovery Caroline is taking early retirement, but will fill her time trying to change perceptions of wheelchair users and amputees, starting with visiting other amputees in the hospital.
“That would have been really helpful but with the coronavirus that wasn’t possible while I was there,” remembers Caroline.
“I think for people to see me as a recovered amputee will be helpful.”
While she has managed to find the positive side of these life changing events, Caroline wants other amputees to know that it is OK to have bad days, she advises: “It’s a very difficult thing. Allow yourself to cry, allow yourself to be sad, it is hard losing part of yourself but if you can look to the positive that will help you through.”
Along with visiting other amputees, Caroline will be visiting the school she worked in to teach pupils about diversity and disability awareness.
“Most of them already know me as Mrs Coster so it’ll help them to see people in wheelchairs are normal people,” explains Caroline.
“I’m intending almost to advertise my amputations,” she continues. “I’ve already said I want the funkiest legs that I can have and hands that don’t look like hands.
“I want my stumps and my metal hands to draw attention to me so I can have those conversations about what happened and about who I am.”
Caroline’s mission to raise awareness will also work to teach people about the dangers of sepsis, an infection that kills more than 36,000 people in the UK every year.
“If I had been more aware of sepsis myself and known the dangers of it I would have shouted more and probably gotten into hospital quicker,” says Caroline.
“To be aware of the angers of sepsis is so important for the general public and to be aware of the dangers of COVID as well.”
Further information on sepsis is available from The UK Sepsis Trust, or call 0800 389 6255.