My journey to losing my leg - Part II

For me, recovery was a number of inter-connected journeys.
For me, recovery was a number of inter-connected journeys.

Roads To Recovery

Part I of my journey was all about my cancer year; the year from the diagnosis with an osteosarcoma through the major surgery to remove almost all of my tibia and replace it with an endoprosthesis to the end of the chemotherapy. Today‘s story is all about my road to recovery.  


Back To Normality

So there I was. Sixteen years of age and I had just finished my chemo therapy. The hair was gone, I had lost quite a bit of weight - I was down to something along the lines of 50 kg, not a lot when you are 1,78 m -, physically I was a bit weak, but otherwise I was fine. More than fine, actually. Emotionally I was full of energy and ready to go. I wanted my life back. And I had a family that was providing amazing support to do what ever was needed to get back on track.  


So back to school it was. Back to a daily routine that was not dominated by the in-and-out-of-hospital cycles. Back to meeting up with friends, catching up with all the things I had missed. And back to a normal teenager life with all the nonsense that teenagers - rightly or wrongly - are famous for.



A Piece Of Advice From The Hospital

The orthopaedic consultant at the hospital had warned me that I needed to be careful. While he had managed to remove the tumour without having to amputate the leg, the consultant made it clear that sport wasn‘t on the agenda anymore. At least not any of the sport that I had enjoyed; i.e. wind surfing, skateboarding, skiing, volleyball etc. The endoprosthesis, so he said, would be okay for walking and for my day to day mobility. But I would not be able to run with it, not even be able to put all my weight on it whenever the knee is not fully extended. And - that was his main worry - the make-it-or-break-it point would be where the metal implant was connected to the ankle bone. This connection might easily break if I overdid it.


And - almost in passing - he mentioned that they had no experience with this kind of procedure - replacing almost the complete femur with a metal implant - with young, active patients. While similar operations on a smaller scale were standard procedure with elderly people, there was no reliable data to indicate how long such an endoprosthesis might last. His guess was that the implant should be fine for at least five years. But he thought it unlikely to last more than 15 years. Not ideal, I thought, but at that time I wasn‘t really concerned about any of this. I just wanted to leave the hospital, start my recovery and see what is possible. 



Developing Trust In My Body Again

Looking back, my recovery process - the immediate one as well as the long-term one - can best be described as several inter-connected journeys. Inner ones and outer ones.


The first journey was about physical fitness and learning to trust my body again. That was top on my list. As soon as the chemotherapy was over and I was back home I took up swimming. Not really my cup of tea. But it was something to start with; something that wouldn‘t put a lot of stress on the leg. So five to six times a week I was in the pool. 


Soon after that I started riding my bike again. As the artificial knee joint wasn‘t up for this kind of exercise - I couldn‘t bend it fully and the quick change between extension and bending was not possible - I just strapped the other foot to the pedal and rested the weak leg on the bike‘s frame. While it took me a while to feel confident on the bike again - and even longer to develop enough strength to ride it with only one leg -, I soon loved it. My way to being mobile. My way to being active. May way to being independent. And to gain confidence in my body again.


Once I started university, I took up kayaking. A river is running through the town where I studied. And as a member of the university‘s canoe club, I had free access to boats. So several times a week, I was out on the river Lahn, exercising, practicing basic kayaking skills and building confidence in being on the water. 


I had always loved camping and being outdoors. The longer, the better. And the canoe was my way of being able to be out in nature without having to fully rely on my legs. Suddenly carrying loads of gear and food wasn‘t an issue anymore. Short trips on the local rivers were good preparation for longer ones, first in Mecklenburg (Germany‘s equivalent to the British Lake District without the mountains though), then in Sweden and Finland. 


These canoe trips were great fun and a good reminder of how good it felt to be out in nature. And they provided great opportunities to gain new skills and more confidence to push the limits a bit further. While long-distance trekking in the remote areas of the planet was always a dream of mine, it took me some time until I actually felt confident enough to try hiking. Hiking for me meant walking on crutches. My leg just wasn‘t strong enough to support me with a backpack. Especially not in rough terrain, down-hill or off the beaten track.


The first two days of every hike always felt hard on the hands, the wrists, the lower arms and shoulders. But generally it was just a matter of practice and the right mindset. My initial day walks and week-end hikes on crutches opened a whole new world for me. They allowed me to experience that I was able to be out in mother nature for longer stretches without depending on a bike, a canoe or any other vehicle to transport my gear. Everything I needed was in my backpack. And I was able to carry it. What a confidence booster.


And with that confidence, I took the next step. Climbing. Another one of my dreams from early childhood years. I initially only climbed indoors and on top-ropes (in this regard I was listening to the warnings from the consultant as I didn‘t want to risk an uncontrolled fall onto the endoprosthesis). And the fact I was able to climb with my endoprosthesis was a good reminder: Limitations are often only in our minds. Many of them can be overcome with the right mindset and the company of trusted friends. An insight that has been with me ever since.



Traveling Further And Further

This journey of getting physically fit, of learning to trust my body again and then pushing the limits one step at a time was mirrored by a growing urge to travel further and further and see the world. 


The intervals between my cancer check-ups at the hospital got bigger, appointments were further and further apart and about two years after the end of the chemotherapy they came to an end. Just in time for me, as I had been offered a scholarship by the German Parliament and the Congress of the United States of America to spend a year in the US. An opportunity I didn‘t want to miss. So in summer of 1989 I left for San Angelo/Texas to spend a year in the local high school. An experience that had an enormous influence on my later life. And it was the year when I finally caught the travel bug that has kept me on the move ever since.


During my university years I had the chance to study in Johannesburg/South Africa. That was back in early 1995. The country had just seen the end of the Apartheid regime. The nation was in transition. What an exciting time to go. And what an exciting country to travel in. A country of extremes, of a wild and untamed beauty, of endless adventures.


While I spent the initial weeks at university, I soon decided that southern Africa has more to offer than attending lectures. So I signed up to help in a development aid project in what was then Eastern Transvaal, while also giving a hand at a dairy farm. Once the project was over, I took to the road. I hitchhiked to the thinly populated north-western parts of South Africa and hiked around Augrabies Falls, before catching a ride on a flatbed trailer into Namibia. I had the chance to visit places of immense beauty in this seemingly barren country before heading back south, first to the Cederberg Range and then to Cape Town. At the southern tip of the African continent I was offered a lift going through Botswana and Zimbabwe all the way up to the Victoria Falls. I had the chance to see Swaziland and Lesotho before exploring more of South Africa. In short: I had the time of my life.



Arriving Where I Wanted To Be

It was during my time in South Africa that my various journeys joined hands. The journey of being fit again and full trusting my physical abilities and skills on the one hand and the journey of wanting to see more of the world and not feeling limited by my weak leg. I still remember the very day when I felt ready to engage in a multi-day mountain hike all by myself. Something I had never done before. I was in the Drakensberg area near Sani Pass. One of my all-time favourites on the planet. I had heard about a three to four day circular route in the borderlands between South Africa and Lesotho. And I knew that was what I wanted to do.


So I stocked up on food, stuffed my gear into my backpack and headed off into the hills. Just before leaving I filled out a ,Mountain Rescue Register‘ card. That is a card capturing basic information about your intended tour and when you are expected back. Normally these cards can be handed in with the park rangers. But I gave mine to the owner of the hostel I was staying in. And I asked him to hand it to the rangers if I am not back within five days. Why I didn‘t give it to the park rangers right away? Well, I was hiking by myself in a mountainous area I hardly knew, with elevations up to 3,000 meters, I had little experience and in the form‘s field asking for ,something to identify you‘ I wrote ,walking on crutches‘. I was afraid the rangers might declare me out of my mind and prevent me from leaving for my hike. 


I knew it was irresponsible. Sorry, I am aware that I am not setting a good example here in terms of mountain safety and good practice. But looking back this walk happened at the right time. A final step in my road to recovery. 


 Hiking in the Drakensberg region has been one of the best things I have ever done. A hike all alone in one of the most spectacular areas of southern Africa. Wild Eland Antelopes grazing, bearded vultures circling the sky. I slept in large caves, one even with a waterfall coming down over the entrance to the cave. I was spooked in the night by baboons and cooled off during the day in natural rock pools that were dotted along the bottom of the valley. And after a couple of days I returned safely, happy and proud! 



Moving Abroad

Back home in Europe, I couldn‘t wait to finish university, get some more work experience and head back overseas again. So it came with little surprise to my family and friends that I soon applied for a job as advisor to the Justice and Peace Commission of the Archdiocese of Gulu in northern Uganda. The actual job description was in line with my skills. And the wider field of work was in line with my interest in social justice issues. An interest I newly developed while being in South Africa.


In Uganda I lived in an area strongly affected by an armed rebellion and mass human rights violations. Tens of thousands of people were internally displaced, the area was heavily militarised, ambushes and small scale skirmishes were the order of the day, general development was low and investment almost non-existent. People were often caught between a brutal armed group on the one hand and the often no less brutal reaction of the country‘s armed forces. 


My three years in Uganda have been a time of formation and immense personal growth. They haven‘t been easy years. Often to the contrary. But I guess personal growth and development never takes place when you are in your comfort zone. And in many ways the years in Uganda were very rewarding years for which I am immensely thankful.


During my stay in east Africa I also developed problems with my endoprosthesis. My lower leg had more and more clearance to the left and right. Not a good thing for a knee joint. Nothing dramatic, nothing that needed immediate attention - but annoying nevertheless as it made walking more and more exhausting and often painful.


But developing these problems while living in northern Uganda put things back into perspective. Many of the things I was struggling with were almost insignificant compared to what people in northern Uganda were facing on a daily basis. And almost all of the issues I was struggling with could be addressed with a bit of patience, the right mindset and a few days in hospital. A luxury most people there did not have. Yet another lesson from my journey that has been with me ever since.


After three years in east Africa it was time to pack and move on. First back to Germany to sort out the problems with the endoprosthesis. Once that was done, I continued to London to start a new job as a program director for a peacebuilding organisation, still focussing on northern Uganda and adjacent southern Sudan. Finally a less frantic pace and a less intense daily routine, so I thought.



The Next Leg Of The Journey

But I was wrong, as it turned out. It soon was time to face another leg-related challenge. 


Read more about my journey in part III of 'My journey to losing my leg'.



Post by Bjoern Eser, the creator of The Active Amputee