The editorial team asked me to write about my illness and recovery. I decided to do so in the form of a fictional interview: both the questions and the answers are written by me.
You‘re in a wheelchair and are generally unable to do many things. What illness have you been diagnosed with?
Cerebral ataxia, in my case, the hereditary disorder SCA6. It doesn‘t manifest until later in life. The first symptoms appear after middle age. They are mild at first but gradually worsen and eventually become severe.
What is cerebral ataxia?
In cerebral ataxia, the cerebellum is literally getting smaller and smaller; it is shrinking. The cerebrum and the cerebellum have the same number of nerve cells, but they are packed much more densely together in the cerebellum, which is why the cerebellum is significantly smaller than the cerebrum. The cerebellum regulates unconscious habits and coordinates muscle activity.
What symptoms have you experienced?
At first, I just lost my balance, then my limbs gradually stopped responding the way I wanted them to. I initially walked with a cane, but then I had to use a wheelchair.
And you still use a walker from time to time, yes?
I can still walk with the walker today, if someone walks with me and holds onto me.
What about exercise?
I can actually move just fine. My muscle strength has not weakened; it’s my coordination that is increasingly impaired. I can make “crude” movements but can’t control them precisely. This is true for my legs, arms, and fingers, as well as for both conscious and unconscious muscle activity. For example, I have serious trouble swallowing, but I do manage it. I haven’t been able to write by hand or play any musical instrument for a long time. I can write on a computer by carefully typing on the keyboard. It’s just getting slower and slower these days.
What are all those handrails in your apartment for?
They are absolutely essential. I use them to pull myself up and hold on to as I move throughout the apartment. I can even climb stairs by holding on tightly to both handrails.
When did you stop taking long trips?
Since late 2016; so, nearly ten years now.
What about speaking?
For a very long time, I wasn’t able to hold a pitch, meaning I couldn’t sing. But I could still speak normally. This ability gradually declined until, in 2019, I couldn’t speak at all. I had to stop teaching and remained silent for six years. Suddenly, at Pentecost 2025, I was able to speak again.
What happened?
We attended a confirmation celebration at our neighbors’ house. They had a piano. When I thought about how long it had been since I’d been able to play, tears welled up in my eyes. That probably brought my emotions and my physical body closer together. Once home again, my wife Friederike—without me suspecting anything—did an exercise with me wherein imagination and music played an important role. She felt that I still had some potential to speak.
Apparently, she was right.
As it turned out, I was able to speak again after two days. I never would have expected that. I still speak slowly, but there’s no time limit. A few other things have changed noticeably, but being able to speak is the most remarkable.
Is it not simply a miracle?
I don’t know of any medical explanation for it. I consider it a blessing—very joyous and incredibly practical.
Did music play an important role?
Absolutely. I’ve loved music ever since I was little. These days, Friederike regularly takes me to concerts. This past spring, we attended a season preview for the Berlin Philharmonic, where the audience was invited to share their thoughts. When she explained how I’d regained the ability to speak, someone remarked that he’d always known beautiful music could sometimes leave you speechless but hadn’t realized the opposite could happen as well.
To be afflicted with a disease like that is truly a stroke of destiny.
Yes. I’m completely dependent on other people’s help. And I have to do everything consciously. That’s why I can only do one thing at a time. My cerebrum takes over the functions of the cerebellum. As soon as I lose focus, something terrible can happen. I’ve fallen a few times. I’ve hurt myself, but the wounds were treated well and have healed.
Are there things that are easier?
Sometimes it can actually be beneficial to be forced to concentrate. Everyone can learn to focus better and better. My hereditary condition forces me to do so.
Can you give an example?
For example, I often have to make a conscious effort to live in the present moment. Usually, when people learn to do this, it comes naturally. The sensory system of our physical body takes care of everything for us. But the further one awakens within the flow of time, the more one emancipates oneself from the body. If we immerse ourselves in certain connections that actually transcend time, then we must also practice consciously living in the present moment as well. In the future, every modern person will consciously switch back and forth between these two realms. I am forced to do so now.
Translation Joshua Kelberman
Photo Lapuerta Gela/Unsplash
