Interview with Walter Wolff

April 7, 2011

Walter Wolff is a jazz pianist based in The Hague, the Netherlands. He originally comes from Finland. Walter is the first person with VHL in his family. This interview was conducted in English.

RG: Can you tell me a little about how you came to the Netherlands?

WW: I had studied for two years at the conservatory in Helsinki [Finland] and I was not happy with my school there. A friend of mine was at the conservatory in Groningen [Netherlands], so I went for a visit. I was able to take an entrance exam while I was there and was accepted. My friend urged me to take the entrance exam at the conservatory in The Hague too, which I did. I was accepted there also. I chose to go to The Hague [Netherlands].

RG: Tell me about your work now.

WW: Unfortunately, the budget cuts are having a big impact on all the arts. Sponsors are pulling out of festivals, so there are fewer festivals. Music programs are being cut at schools. There are fewer gigs. I spend at least 50% of my working time on getting and arranging work; that takes a lot of energy.

It is tough for everyone in the business, but these days you need “the whole package” to survive. I like the variety that comes with many aspects of my job, from the administration to making sure the posters get out okay, to the actual performing. I am doing relatively okay for now; I have two teaching jobs and am working with different groups regularly.

RG: What was your first experience with VHL?

WW: I got a brain tumor in my second or third year at the conservatory in The Hague. I thought this was bad luck, but it could happen to anyone. I could NEVER have expected this. When I needed a second big operation on my back (for a spinal hemangioma), the doctor thought it might be VHL and at that point I had a DNA diagnosis. When I heard that I had VHL, I thought, “okay, I do the checks once a year,” and I just went back into my studies. I only slowly realized what it really was about. My mother was more concerned and did the research to understand the implications of having VHL. She has been very involved from the beginning.

RG: Did you get adequate information?

WW: The geneticist described the genetics but didn’t explain the course of the disease or what I might get. I would have liked to have someone come and talk to me a few weeks later about what VHL really is.

RG: Did VHL affect the choices you made with regards to education and career?

WW: I had already made my career choice before I was diagnosed with VHL. Who knows if I would have chosen differently if I had known I had VHL first.

RG: You mentioned that you have had several surgeries in these last years for brain hemangiomas. How do VHL-related problems affect your music? I can imagine that fine motor skills could be affected.

WW: My left hand is definitely weaker since the last operation. It probably has about 60% of its previous strength. Fortunately, I have been able to adapt as a pianist, so my music still sounds good. If my right hand eventually experiences similar problems, I might have to make some big changes, perhaps stop being a piano player. I can adapt to still work, for example, I can imagine doing other things in the same field. Maybe I would write more music instead of playing it. I am going on the assumption that it is a matter of WHEN this will happen not IF.

I am very fortunate and lucky to do what I like. Right now, I am doing okay, and I don’t want to waste time. In that respect, you could say that having VHL has been good to me; I stay active and appreciate my abilities and good fortune here and now. Artistic blackout can happen to anyone. But if I feel that way, I just say to myself: “come on Walter, pull yourself together.” VHL has forced me to develop some psychological strength. It makes me aware of the quality in my life.

RG: As a musician, I can imagine that you are used to communicating emotion more than someone who works in the service sector. Does music help you deal with stress in general?

WW: Communicating emotion works two ways. Playing music helps me deal with let-downs or feeling blue. It helps me deal with emotional stress; that definitely feeds into the music. It’s abstract, but sometimes I want to play out emotion through music and make the audience laugh, or make them be upset, or even cry. There is some conflict with remaining professional at times, but that balance comes with practice.

RG: Have you ever experienced discrimination in employment, insurance, mortgage lending, or support?

WW: I have never experienced any issues with life insurance or mortgage, but at this stage in my life, I haven’t really been confronted with those needs. I don’t own a house. I like my doctors in Finland and I fly back to Finland for my periodic screens. My doctors know about VHL there, and I trust them. Although we can discuss medical issues well with them, talking with other people affected by VHL can really help with the practical points. For example, at the Dutch Annual Meeting in Breukelen a few weeks ago, my girlfriend and I talked with a man who had VHL who told me how he got a mortgage on his house. I had never met anyone else with VHL before.

To hear Walter’s music or check out his next gig see: http://www.walterwolffmusic.com/
His CD or digital album can be purchased here: http://wolff-angiuli-fryland.bandcamp.com/album/prelude

As printed in the VHL Family Forum 19:3, September 2011. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.

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