Posted on 11/04/2019

The truth behind living with limb loss

The truth behind living with limb loss

April marks the beginning of Limb Loss Awareness Month, and we’re supporting those who have experienced limb loss by sharing the stories of amputees from around the world.

In this article we explore the reality of limb loss and how it can affect different people’s lives, including the mental and physical challenges presented directly after an amputation and also many years down the line. From choosing to have a limb removed, to experiencing a potentially fatal health condition resulting in amputation, we’ve featured some of the best blogs on limb loss below in the hope of both educating and inspiring others to better understand what it’s like to live as an amputee.

Living with limb loss

Life with limb loss can differ greatly for amputees, especially because people can experience the loss of a limb at any age or be born with limb differences. Additionally, people can lose a limb or require an amputation for many different reasons. They may have:

  • been born with a condition that affects a limb or limbs
  • had an amputation due to an ongoing health condition
  • had a sudden amputation due to a serious illness, such as sepsis
  • lost a limb due to an unexpected injury or accident

Adapting to life as an amputee and overcoming new challenges can take time, particularly for those who weren’t living with a physical disability beforehand. Grief after limb loss is common, with body image and self-confidence affecting a lot of amputees post-surgery. It is important that people have the right support to carry on with their lives and move past their grief.

Although financial support, age and health can all impact recuperation after limb loss, emotional and physical support from family, friends and other amputees is of great importance on the road to recovery.

Life after a sudden amputation

Kathleen’s story

Kathleen was just 18 years old, and in her first semester of university, when she developed meningitis. After what she thought was a bad cold, Kathleen began vomiting, shaking and almost collapsed. She experienced multiple organ failure and had to have both of her legs amputated.

On the meningitis website Kathleen explains:

“Being told I would lose my legs is still the hardest moment I have encountered… As he told me I remember screaming out loud. I didn’t know anything about prosthetics at this point, I didn’t think I would be able to walk again let alone dance.”

Recovery was hard. After months in the hospital Kathleen went back to live with her parents where she depended on their aid for many tasks. She returned to University the next September and started to adjust to the changes.

“It took me a long time to begin to regain my confidence. Now I feel more content with what has happened and especially the way I look at my physical capabilities, but to begin with I was scared about meeting new people, telling them about my legs and nervous about going out. I don’t view this in the same way now; prosthetics are a part of my daily life and I am happy to talk openly about what happened and my disability.”

Kathleen is a journalist, dance artist, film maker and disability advocate. She has her own blog titled Amputee Kat where she shares posts about dance, journalism and her life with limb loss.

Kristan’s story

In 2013 Kristan Seaford had a life-threatening experience when a flu virus developed into pneumonia and septic shock. For 100 days she was transferred between different hospitals and put into a medically-induced coma. Kristan now lives as a triple amputee and has since become a personal counselor and motivational speaker. She lives in North Carolina with her husband and five children.

On her blog, Kristan discusses the many day-to-day challenges that she faced, and still faces, after her amputation. As she lost both hands, learning to use her prosthetics for simple tasks, such as holding her children and making breakfast, have been paramount in her recovery. It’s not just the physical challenges that Kristan has dealt with but a range of mental and emotional challenges. Kristan discusses parenting with limb loss, especially focusing on her relationship with her young daughter, and how her amputations and time away affected their bond.

“I was away from her for 100 days. Even worse, when I came home, I hardly resembled any memory that Jeannie had of me. Instead, I was wounded, decrepit, sick, and made up of more bandage than body.”

As time has gone on Kristan has been able to interact more with her daughter and can now pick her up, make breakfast, pack her lunch and change some of her clothes. She persevered to rebuild the connection she had with her daughter, but was often left upset and hurt by Jeannie’s distance, worrying that she would never recover their bond.

“Over the past eighteen months, we've had ups and downs in our relationship. But today Jeannie loves me, her Mommy. She asks for me to read her a story at bedtime… She also comes to me crying when she's gotten hurt. And runs to me with joy when I pick her up from school.”

Kristan has worked on staying active and taking part in a range of sports. She regularly attends a local swimming pool now she has learnt to swim again and has been involved in activities including canoeing, skiing and rock climbing. She has also attended events, including The Amputee Coalition Conference and the No Barriers event called The Summit. Kirstan praises these groups for openly discussing the struggles and grief that those living with limb loss face, for inspiring a hopeful outlook on the future for people living with an amputation, and for introducing her to many new friends and other people living with a disability.

Kristan’s blog serves as a space to impart her inspiring and positive stories, as well as addressing the mental and physical difficulties that she tackles as someone living with limb loss.

Why might somebody choose amputation?

Hannah Moore

“I’m Stumped” is a blog run by Hannah Moore in which she writes about her experience with Complex Regional Pain Syndrome (CRPS) and a leg amputation. Hannah chose to have her leg amputated after she experienced multiple complications due to her CRPS which caused constant pain from reoccurring ulcers.

On her blog, Hannah writes:

“I have been wanting to have my leg amputated for the last 18 months or so. This is because for the last 2 years I have been suffering with severe ulceration on my CRPS foot, which has meant having a plaster cast and dressing under general anesthetic, sometimes as regularly as once a week.”

Knowing that amputation could eliminate her condition she chose to have her leg amputated and now lives free of CPRS symptoms.

“My amputation has been amazing and completely got rid of my pain, I am now pain free. I also know a couple of others it has worked for. The problem is no one can tell you whether it will work for you before the operation and it is a gamble. I also know some people who have had CRPS and had amputation who still have the same CRPS pain or some pain.”

However, Hannah still had to adjust to her life with limb loss. She describes how “the first week at home was difficult, getting used to doing more and more things for myself, having to tackle the stairs and things”. Since having her leg amputation, Hannah has become a paratriathlete, recently taking the crown of British, European and World champion.

Active and athletic amputees

Keeping active and eating well are vital in the road to recovery and there are many amputees proving that limb loss doesn’t have to hold you back when it comes to health and fitness.

Bjoern Eser

The Active Amputee is a blog run by Bjoern Eser. He is a father and husband who has survived cancer and is now living an active life with an above-the-knee amputation. As well as writing about his own experiences on the blog, he also shares stories from others with limb loss who are living an athletic life. He created the blog to inform, inspire and engage readers, specifically others who have experienced limb loss.

Athletics, rock climbing, surfing, water sports and circus gymnastics are just some of the sports that these amputees enjoy and even compete in. They also discuss other aspects of life including parenthood, personal journeys and experiences before and after amputations.

Anoushé Husain

Anoushé Husain is a pioneering role model who takes an active role in the Paraclimbing community in London. As well as being a cancer survivor and living with Ehlers-Danlos Syndrome (EDS) she was born without her hand and arm below the elbow on her right side. This hasn’t stopped her from taking on physical challenges both on the climbing wall and outdoors. Anoushé has a blog, Facebook and Twitter page where she shares information about her life and encourages others who are living with limb loss or disability.

Living well with limb loss

Learning to live well with an amputation isn’t always easy, especially in the recovery period. Staying healthy, active and maintaining a positive outlook are all important. All these bloggers have continued to promote positivity, determination and honesty through their limb loss journeys and are great role models to inspire and inform others who have been affected by limb loss.

If you are looking for more information about limb loss, there are many charities that offer information, advice and resources for anyone living with or affected by limb loss, including:

Limb Power
The Douglas Bader Foundation
Limbless Association
Finding Your Feet

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