Interview : Bjoern Eser, the Active Amputee
For our greatest pleasure, we interviewed the amazing Bjoern Eser, amputee and founder of The Active Amputee‘s blog : A resource page for amputees and their families. Check out the interview ↴
Can you tell me a little about you, your story ?
My name is Bjoern. I am a father of three amazing children, a husband to an equally amazing wife, a thankful cancer survivor, an outdoor enthusiast, a passionate chef, a book lover, a very experienced development practitioner focussing on conflict transformation and peacebuilding – and I am a very active above-the-knee amputee and the founder of and shaker and maker behind The Active Amputee.
I was diagnosed with bone cancer back in 1986 when I was fifteen. I was lucky, I survived and the doctors could save my leg, but they had to replace my whole tibia, from the knee all the way down to just above my ankle. The leg was good for day to day walking, but I could not run and was not able to put all my weight on the knee when it was not completely straight. Otherwise it would just collapse under me. But that was fine. I found ways of doing things like hiking on crutches, kayaking, riding my bike with only one leg, the foot strapped to the pedal.
In 2004 I caught an infection and just didn’t manage to get rid of it again. For about a year I was mainly focussing on getting better. But in vain. I informed myself about the options I had. And most consultants recommended taking out the Endoprosthesis, flush the leg for three month with antibiotics while having it kept in place by an external fixator. The replacing the knee by a stiff metal rot before slowly being able to get into the rehabilitation process. The whole procedure was said to take about 5-6 months, would have left me with a stiff leg and the chances of actually getting rid of the infection was about 70%.
But having a stiff leg – and all the limitations that come with it – wasn’t an option for me. I like to be active and for work I travel a lot in Africa and Asia. So I decided that an amputation was the better way forward for me. I found a great clinic with an integrated concept (performing the amputation, immediate care, rehabilitation, prosthetists etc. all under one roof), had it done and was back at work full time and living by myself – meaning that I had to do everything from shopping to cooking, from cleaning the flat to you name it – less than four months later. Six months after my amputation I was back in East Africa and had done my first 4 miles hike in the hills.
You have an amazing blog where you regularly publish articles for amputees. Since when does this blog exist and especially what was your motivation to create it ?
I started this blog in April 2017. And was playing with the idea for about three months prior to that. I wanted to create a one-stop-shop kind of resource page that covers the niche between purely personal blog (as the story of one amputee and what he or she went through, does, can recommend) and the professional pages of prosthetic companies, rehab centers and non-for profit organisations. Something that provides quality information and amazing inspiration to people with limb differences, encouraging them to push the limits, try out something new and live and active and rewarding life.
I initially had another project lined up. Something bigger: Setting up a company that offers outdoor adventures for amputees and other people with limb differences. Anything from the afternoon in the hills to climbing courses for disabled people, from camping weekends to sea kayaking trips. From summer camps for amputees to weeks away in the Atlas Mountains. A combination of adventure sports with – where needed – psycho-social support options in case people are still in the process of coming to terms with their lim bloss. Action-rehabilitation, so to speak. But then I suddenly found myself to be the dad of three kids and this project needed to be put on hold. I needed to find something that could be done next to my normal day job. And that is when The Active Amputee was born. But the other adventure idea is still on my mind. Maybe, one day, maybe…I will keep you in the loop.
« Empower people with limb differences. »
What is your main goal with your articles?
I know this term is often used and abused, but my main aim is to empower people with limb differences. I want to provide relevant quality information on all issues that are amputee-related. This could be skin care of the residual limb and dealing with phantom pain, this could be handling volume fluctuations in your stump or what are new developments in the prosthetic sector. You name it. I think having access to this kind of information is key to making informed decisions. And making informed decision is essential to be in the drivers seat as an amputee instead of being told what is best for you by medical staff, insurance companies and prosthetists.
In addition I want to showcase other people with limb loss and their journeys. Provide inspiration through the sharing of what is possible. Again, anything from amazing stories about initial small victories after an amputation to epic accomplishments; e.g. the story of Rob Jones who ran 31 marathons in 31 days. Something that seems out of reach for most able-bodies people. Given the fast that Rob is a double above knee amputee makes this run even more special – to say the least. I think these stories give hope. They inspire. And they let people with limb difference feel that they are not alone. There is a community, even if they have no contact with other amputees in their day to day life. And this knowledge, the fact that you know you can reach out to others, ask them for help, can help you where the going gets tough.
And that brings us to the third leading light for my page. Engaging amputees to be active. The community aspect I just mentioned is key. But so is hands-on advice and information of starting something new. How to ride your bike again. How to get into climbing. Where to look for funding for sports equipment. Are there any special events for amputees any where near my place. I make it a case to try to answer all question that reach me on my blog or through social media personally. And I am increasingly showcasing options to be active and provide the necessary information to take the first step.
It’s as simple as that.
Your blog is alimented by inspiring stories from amputee people, how do you find these stories ? What is your process to find these different subjects for your blog?
I started out by drawing on what I know, what I have gone through and what I can offer. I also linked up with two other amputees who I know personally, asking them to contribute something for the initial weeks. I wanted to make sure I have enough articles to launch this new project. At the same time I started searching on the internet and on Instagram for other amputees. People who had a story to tell. I reached out to them, presented my idea and the new resource page and asked them if they were willing to write something. Many did.
Generally speaking I am not a bit social media fan – I don’t even use Facebook. But for what I am doing Instagram is an amazing platform. It’s where I find most new connections and manage to initiate the discussion with other amputees
But more and more I am in contact with prosthetists, with prosthetic companies, with support organizations for amputees etc. And I regularly run polls and questionnaires on my blog and ask people what I should focus on next. I think this mixture has worked well so far. Especially on the issue of sharing inspirational stories and building a community. From now on I need to focus more on the aspect of providing information, especially around technical/prosthetic issues. And yes, I am currently working on some exciting new collaborations which – if they work out – will help me to do just that.
Do you have particular story(ies) that have affected you personally?
Yes, many. Some because I felt immensely touched. Some because I was deeply impressed. Some because they outraged me. And not all of these stories are on the blog. Sometimes people share stories with me that they do not want to have published. But let me share some that will be with me for the rest of my life. And for which I am thankful that these people shared them with me.
One of the first external stories I shared on the blog was the story of Malvika Iyer, a bomb blast survivor from India, who dis now a well known disability right activist. She lost both her hands during the explosion, which also left her with severe difficulties when walking. Malvika is an amazing young woman, strong, passionate, outspoken. And having been able to interview her – although only on the phone – was one of the highlights of my work with The Active Amputee so far.
Similarly the story of Erin Ball, the double amputee circus artist. One of the people I eagerly follow on Instagram. Again, a very strong person full of ideas and the guts to turn daring ideas into reality,
Or the story of Deishe Nishimura, a young biologist who was attacked by an alligator while working in the Amazon basin. She lost her leg, nearly lost her life. She recovered and soon went back visiting the very place that represents both, the place where she was most happy and the place where she nearly died and was left with life-changing injuries.
But as I said, there are endless stories that left a deep impression on me. Often the ones about children – which I am not sharing here. At least not at the moment. Fighters with strong hearts and an almost unbreakable willpower.
We can see, specially on your instagram that you travel and do a lot of sports (hiking, climbing …), Why? What does it bring to you?
I need physical activity to feel okay. If I stay inside for a day or two, I become a complete pain in the behind (ask my wife). All grumpy and not myself. Being physically active is part of who I am. If I am out on a walk, in the hills or on the sea I feel at ease with myself and the world around me. It’s the time to unwind, to let the mind wonder, to relax, but also to develop new ideas – I constantly have new ideas and start new projects of this nature – and further refine existing ones, develop the strategies, the concepts, think about next steps.
But I also like the physical aspect of it. The challenge to see if I can get up that hill, or down that river, or manage to cover 20 kms with my gear on my pack. The idea of pushing myself and testing the limits is something I still find immensely tempting. And I hope it stays like this for a bit longer.
Let’s talk a little about customization, What do you think about customization of orthopedic devices ?
Great! And key to building confidence within amputees and putting them back into the driver’s seat when it comes to their lives. Some time back when I was still thinking about setting up the outdoor adventure company for amputees – a time before customize covers and when special prosthetic legs and arms were far less common than today – I was exploring ways to cooperate with a very experienced prosthetist. The idea was to quickly build the parts we need for enabling people to try climbing, canoeing, biking etc. Nothing fancy for the big market, but r&d models for being used during summer camps etc. And during our brainstorming phase we thought we should aim at something called Pimp My Prosthesis (as in MTV’s Pimp My Ride). And there the idea of customization was central to the whole concept. The idea of taking the prosthetic field out of the skin colored grey in grey medical field into the lifestyle domain. Turn patients into users and customers. Move from medical and technical experts taking all the key decisions to amputee-led/inclusive joint processes
If you had to choose a design from our collection, which one would it be and why?
Wow, that’s a hard one. There are quite a few I find stunning. I think my top runner is Totem with my logo integrated into it (sorry for the extra!). But I am also really tempted with Vegan (if I had to choose one without my logo added to it, this would be it) and the wood ones; e.g. Noyer, Chene etc. They are special and while I have seen many different designs before, the wood ones are new to me. Well done!
Any amazing plan for the future ? (we probably sure of that 😉)
Man! Too many actually. I am thinking about doing a Snowdonia traverse; i.e. traversing through Snowdonia National Park in north Wales. A stunning mountain area with many hidden jewels to explore. I was thinking about an East-West crossing in the less visited areas of the park but still taking in Snowdon itself, the highest peak there. It would be around 45 kms, covering 4600 meters in altitude. This one is from my ‚like‘ category.
Then there are others which are more in the ‚maybe one day‘ category. The GR ling distance trails in Corse and the Auvernegne/Cevennes are ranking high on my list. As are some hikes in Nepal and northern India/Ladakh.
I am also currently exploring ideas to produce a few high quality videos so that The Active Amputee could have it’s own YouTube channel. And I don’t mean the little home made clips that I have uploaded in recent months. No, I would like to do some quality videos about amputee outdoor activities. But again, this is a long shot at the moment.
One more thing to add and/or a favorite quote ?
“Sounds like a stupid idea! When do I have to be there?“ – I think this covers my attitude pretty well. I like to dream big, to get the right people on board to develop the concepts to turn ideas into a reality and then get shit done. Maybe not perfect, but get it done and test it.
Thanks for the opportunity of this interview. I really appreciate this.
Redaction : Cindy Habchi – Crédits Photos : ©Bjoern Eser