Finding Harmony Through Challenge: Mikko Pettinen’s Story

Rori Daniel (RD): Can you share the journey leading up to your diagnosis of superficial siderosis in March 2023?

Mikko Pettinen (MP): In late summer 2022, my wife and daughters started wondering why I wasn’t hearing as well as before. At first, they just thought I wasn’t paying attention.

RD: What were your initial thoughts and feelings upon receiving this diagnosis?

MP: It was very confusing. At first, I was relieved they found a reason for my hearing loss, but then I had to wait about six weeks to meet the doctor. I started doing my own research and found the Superficial Siderosis Support Group on Facebook. I’ve gotten a lot of support and information there.

RD: How has superficial siderosis affected your ability to perform and compose music?

MP: My symptoms so far have mostly been hearing loss and some balance issues. I haven’t stopped composing, but I don’t have as much energy. I used to stay up late in my home studio, but now I go to bed around 10 p.m.

Performing has become difficult, especially since last September when loud and high-pitched sounds started to distort badly. Practicing trumpet is challenging—the sound only feels somewhat normal if I play softly or with a mute.

Now, I always use in-ear monitors for performances and UMO Helsinki Jazz Orchestra rehearsals. I’ve been with UMO since 1998. I use my iPad to mix my own sound. It’s still hard—if someone speaks to me, I often can’t hear them.

RD: Have you adjusted your practice or performance routines due to the condition?

MP: Yes. I use mutes or headphones when practicing. Since I can’t trust how I hear my sound, I record myself and listen back with headphones. That’s how I control my tone now. It’s frustrating.

RD: Your upcoming album, Patient Patient, draws inspiration from your experience with superficial siderosis. Could you elaborate on how your journey influenced the compositions?

MP: In October 2022, they found large exostoses in my ears. I had surgery in November 2023. After the surgery, I wasn’t allowed to play trumpet or sing for two weeks. My left ear was deaf from packing, and it affected my right ear too.

I didn’t want to listen to music or watch Netflix. So I sat down at the piano and started composing. I decided to write music for my quartet, Why Not, with superficial siderosis as the theme. I wrote three pieces in a few days.

Earlier, I composed a song called “For JK” after watching an online memorial for Jari Kokko, a Finnish SS patient who lived in Canada. That song came out very emotionally.

RD: The title track of Patient Patient includes the actual text from your ear surgery report. What inspired you to take such a unique and creative approach?

MP: I read the report several times and it was so cryptic it made me laugh, even though it was gritty. I remembered John Coltrane once played a poem on saxophone like reading it. So I did the same.

We performed the piece live in January. I handed out copies of the report to the audience, and they could follow the music with it. It was a very special moment.

RD: How have you coped with the emotional challenges that come with a rare disease diagnosis?

MP: My family has been supportive, but it’s been hard. I was pretty down for a few months, but then I started focusing on one day at a time.

I try to sleep well, ride my electric bike (about 150 km per week), and I started going to the gym 2–3 times a week.

I want to learn everything I can about the disease, even the scary parts. It’s frustrating that most doctors here don’t know much about SS.

RD: Has music played a therapeutic role in managing the uncertainties associated with superficial siderosis?

MP: Yes, definitely. That’s one of the reasons I wanted to release this album. Music heals.

RD: What do you hope listeners take away from your album in terms of understanding Superficial Siderosis?

MP: I want to raise awareness and encourage people to see a doctor if they have hearing or balance problems. Even if people don’t focus on the SS theme, I think they’ll still feel the emotion in the music.

RD: Are you involved in any initiatives or collaborations to raise awareness about this rare condition?

MP: Not yet, but I’m interested. I’ve been thinking about inviting an expert from the US, Canada, or England to speak at the album release concert. I’ll need a grant to make that happen.

RD: How did you approach Patient Patient’s composition process differently than your previous works?

MP: This album is very personal. I wanted to express things I don’t fully understand, using music.

The first track, “Adapt,” is over 12 minutes long. We released three different videos for it. The lyrics came from a WhatsApp message from Christiane Kokko after I told her about the hearing distortion. She wrote, “Can you focus on what you can do with what you have and adapt? Adapting is key.”

My friend Teemu Mattsson edited the videos to reflect how I feel. I’ve also had bizarre symptoms like tinnitus-like electric shocks in my head. We tried to represent those visually.

RD: Were there specific musical elements or themes you incorporated to reflect your personal experiences with the disease?

MP: Yes. The song titles themselves tell the story:

• Adapt
  • Part 1: Frustration and Denial
  • Part 2: Adapting Is Key
  • Part 3: Focus
• For JK
• Iron Head
• Living With It
• Patient Patient
• Lumbar Puncture (an improvised piece)

We recorded Lumbar Puncture in one take—it captured the pain exactly as I felt it. I had a lumbar puncture last September, and it was extremely painful. I described it to my bandmates and improvised the piece together.

• Part 1: Frustration and Denial
  
• Part 2: Adapting Is Key
  
• Part 3: Focus
  

These videos are part of the forthcoming album Patient Patient. You can also visit Mikko Pettinen’s official YouTube channel for more content:
https://www.youtube.com/@mikkotrumpet​

RD: How did your bandmates in Why Not respond to the album concept?

MP: They thought it was a great idea. They were very supportive and had amazing ideas for the arrangements. They’re incredible musicians and wonderful people.

RD: Did their understanding of your condition influence their contributions to the project?

MP: Yes, only in positive ways. They really understood and captured the emotions needed for the music.

RD: How have your fans and the broader community responded to your openness about your diagnosis?

MP: I’ve been open from the beginning, and people have been supportive. But many still don’t understand the disease. After my surgery, some people thought the problem was fixed. They ask, “How are your ears?” I say, “My ears are okay, but my hearing is not.”

RD: Have you found support for artists dealing with health challenges within the music industry?

MP: Yes. Finland has a good healthcare system, but it can be slow. For example, they found a spinal fluid leak last August, and I’ll have surgery to seal it on May 5th.

RD: Beyond Patient Patient, do you have plans to continue exploring health-related themes in your music?

MP: Like my band name says: Why Not? I don’t have any plans yet, but we’ll see after this album is released. I’m running a crowdfunding campaign to help fund it: https://mesenaatti.me/en/3693/_/

RD: What message would you like to convey to others with superficial siderosis or similar rare conditions?

MP: Go to the doctor, demand treatment, join support groups, and don’t give up. Try to get a prescription for Ferriprox. Public healthcare denied me, so I went to a private neurologist who prescribed it. He might be the only doctor in Finland who knows about SS.

RD: Since your diagnosis, how do you feel you have evolved personally and artistically?

MP: Sometimes I’ve been a bit cranky or impatient. But a friend told me I’ve played the best improvised solos of my life in the past few months. Maybe because now I really have to focus and listen carefully.

RD: Is there any advice you would offer to fellow musicians who might be facing health challenges?

MP: Go to the doctor, seek help, join support groups, and be open about your condition. And don’t give up.