Training is the answer to what ails me

Where I am and where I'm going

Part 3 of 3

I am Friedreich’s Ataxia!

‘It is not the disability that defines you; … (Jim Abbot)’; I have heard that quote a lot. This condition took a large amount of my identity since it wreaked havoc on my life. I would not say my life was un-complicated before I knew, but it was definitely easier to get around. When I realized what was going on with my body I had to change, the condition changed me. My disability started defining how I could live my life and how not to.

One of the first things I remember being told was that the degeneration of FA remains steady, at a continuous rate. I was 35 when I got the diagnosis, my walking was okay, I could catch the odd balance loss by holding on to something. I thought; “great, life can go on as usual, my career is not in danger, I have time until the disease becomes relevant” – unfortunately, that turned out not to be true. It hit me hard, my walking deteriorated rapidly, balance losses increased significantly, and it became more and more difficult to stand up. FA made me give up working in academia, an area I not only have immense passion for but something that took me over ten years of study to get the relevant qualifications. Apart from teaching students, part of my specialization as an architectural engineer meant working on excavation sites, in my case in Turkey, Greece and Egypt; it became clear that those generally inaccessible sites (for a fit and healthy human being) now were impossible to reach. Writing articles became harder as not only did my vision suffer, my haptic skills suffered too and writing, even on a computer, is difficult. Alas, the work environment of academia is really unpleasant. A stronger me kept up with the pace as the passion for Greek and Roman antiquity was a powerful driving force, but now? I was forced to give up the job I had and as all my research and job applications that stated my disability and the subsequent need for special treatment came back unsuccessful, I was left without a chance of further employment. I was without the energy to continue; FA had defined my career.

The inability to work made time available for sport, suddenly exercise became a big part of my identity again. It started with a small group of really good friends that presented me with a challenge; whether FA allowed me to run a half marathon. After a reasonable amount of training the answer was: Yes, with the level of degeneration I was in at the time, completing a half marathon was still possible. Since then, the Oxford half marathon turned into an annual event which in turn became part of my identity. For the last three years friends and family have gathered in increasing numbers as team Ataxia to get me over that finish line 13.1 miles later. Only the coronavirus stopped us from doing this in 2020. It is obvious to me that the right exercises (a lot of them) are the reason why I am still moving independently today.

‘…It's how you deal with the challenges the disability presents you with’ (Jim Abbot). Even though FA defined my life, it does not define how I live it. Having spent my childhood in several training camps and advancing into the national youth selection, I must not only have been able to control the early stages of FA but reduced its impact to a point that no one at the regular health screenings picked up anything irregular. I did so much sport, too much, in fact, a rather obscene amount compared to a non-competitive upbringing. Success delivered the motivation, at some point, in my age group, I was Germany’s fastest lightweight, I still have that t-shirt somewhere. Now, about twenty years on, in order to battle FA, rowing has to become part of my identity again. In the same way I reduced FA’s impact as a teen, I needed to out-train the physical aspects of the condition again. FA puts me into a position where it has become my job to deal with its challenges and as long as there is no cure, I will have to live with it.

This disability presented me the need to re-define my career, certainly not the one I had in mind when rowing and I parted ways about twenty years ago. The more exercise I am doing, the harder I train, the more independence I gain; at the moment, I cannot even imagine being able to walk without rowing. I have a lovely family with two wonderful children I like to spend time with, which means I have to find the right balance in order to be allowed to increase the amount of exercise I can do. FA is a merciless disease that reminds me every day why I have to train and as I have to train, why not seek motivation in goals I have not achieved yet. At this stage I am chasing the fitness from my teenage years and with a little help, I should be able to close in. As a kid, I never won a World Cup race and certainly did not get to the Olympics, now in my early 40’s rowing is part of my life again and if the Paralympics even become a possibility, then I will train even harder. It already feels like I have been transported back in time, into my late teens, just this time I am in a group of people that understand personal challenges, a group that – unknowingly - I have always belonged to. It would be incredible if I could make the cut for the national team this time round, just imagine the smile on younger me’s face.

As I am older now, with all the experience I have gained over the years, success becomes relative. If Paralympics will not happen for me, that is fine; simply being able to walk independently is such a gift, if too much rowing gets me there, then that is good enough for me.