Byron Janis Talks About Living with Psoriatic Arthritisby Lisa Emrich Patient Advocate
Byron Janis has a charming laugh. Maria Cooper Janis loves her husband. As a couple, the Janises are warm and inviting. I was privileged to spend 2.5 hours with Mr. and Mrs. Janis on Thursday afternoon following their appearance on a local radio show in Washington, DC. to discuss their new book, Chopin and Beyond: My Extraordinary Life Through Music and the Paranormal (J.Wiley, 2010), which contains Byron Janis’ memoirs.
Byron Janis, the classical pianist of world acclaim, continues to perform and compose music after 80 years at the keyboard, after developing psoriatic arthritis in 1973, and after joint surgery in 1990 which left him with a shortened left thumb.
“We learned that they could have done the procedure two different ways which would not have resulted in a shortened thumb,” says Maria Cooper Janis, artist, wife of concert pianist Byron Janis, and daughter of Gary Cooper.
The unspeakable rage which Byron felt upon this discovery is unimaginable. But despite the challenges of pain and arthritis, recovery from five surgeries, and a bout of severe depression, Byron Janis states that he has spent only 2 to 2.5 years (collectively) away from the keyboard throughout his career. That is impressive regardless of illness as Byron performed his Carnegie Hall debut 63 years ago at the youthful age of 20.
As spokesperson and Ambassador of the Arts for the Arthritis Foundation since 1984, Byron performs at fundraisers and speaks to children living with arthritis and other disorders about following your dreams. It is apparent that encouraging children has become one of Byron’s passions.
“Anybody who loses the child in him has a less interesting, pitiful life. Because all the great artists I’ve known - I’ve known Picasso, painters, all kinds of people - they are children. They grow up, mature, whatever. But the child remains,” says Byron Janis, concert pianist and composer.
Byron: “In 1973 I was in London recording and developed a little patch on my fourth finger that was very painful and didn’t go away. I couldn’t understand what it was cause usually those things go away but this didn’t. It was very slightly swollen. Of course playing would exacerbate the problem because the key hitting [the finger] would make it worse.
So I went to a doctor and it took a long time for him to tell me what it was. He told me what I had was psoriatic arthritis. I asked what exactly is that and his remark was enough to send me to bed for a month. He said, ‘It doesn’t get any better.’ That was his remark, and of course it didn’t. Eventually it went to all my fingers. The joints, the so-called last joints or distal joints, on all my fingers were inflamed. I sort of learned when I was playing which finger was less inflamed than the other one and I would change fingering on stage to compensate for the difficulty.
[The doctors] said, 'You should forget about playing, really, it’s too difficult.' And again like the accident when I was 11, when I lost the use of one finger and it was numb, which it is until today, I said to myself, ‘No, no, no, I’m not going to listen to that. I’m going to keep playing,’ and I learned.”
At the age of 11, Byron Janis put his hand through a French door and sliced his pinkie finger down to the bone. He suffered severe nerve damage and was left with a permanently straightened finger. But he got right back to the keyboard and learned how to compensate for the deficiencies. He then went on to study with Vladimir Horowitz, perform around the world, and open the Cultural Exchange between the USSR and the United States in October 1960.
Mind Over Matter
Byron: “There are many things that we can learn how not to feel. The brain, as I was saying earlier, cannot think of two things at once; we know that scientifically. In my case, I think if I’m very involved with the music, the thing that would send a message to the brain [to feel pain] can’t do it because I’m involved in something else. So therefore the pain is much less. Really, if people focus very strongly on something that they like - not like, love - I know that they’ll be able to handle the difficulties they have in a much easier way.”
Janis had just came from Pittsburgh where he spoke to a group of children living with severe physical or learning disabilities at the children’s hospital. He told the children, “There is a job for each one of us, no matter what our condition, just something we can do, that nobody else will do, as we do it. I keep telling them, almost nothing is impossible. You’re going to find something that you love and that you will be able to do. Look at Steven Hawking.”
Byron: “Each one of us has something that we are passionate about. Passion is an important word here. You have to be passionate about wanting to do something. And if you are, and if you have the talent and feeling and belief that you can, most of time you will. I believe it and I’ve seen it, in myself and in others.
Something I say about arthritis, ‘I have arthritis, but it doesn’t have me.’ I say this to the younger people. ‘If I can do it, you can do it.’ We’re all able to have all kinds of experiences. We need to have a free mind and have a belief that it’s possible.”
There is a wonderful quote from the book in which Byron describes a very difficult time (before he was public with his arthritis), a time when he was turning down playing engagements. I quote: “I was lost and didn’t know where to turn or how to handle what felt like the dissolution of my life. No piano, no music making, meant no Byron.”
On Thursday I asked, ‘Have you redefined what it means to be Byron?’
Byron: “In a way, I suppose. I learned that I could be someone outside of the piano. When I would go to a dinner party and would just talk to the people, I learned that I could speak to people in a way that would seem to interest them. And I said, ‘Oh wait a minute, maybe you don’t need the piano to exist so to speak.’ I had an identity outside the keyboard.
Then later, when I began to compose, to write music, I realized that I had another way to go, just in case I could never play again. But I kept playing, which is the whole point of my story. I kept playing despite arthritis. And in a way, I feel that I did triumph over the problems.”
Following the botched thumb surgery in 1990, Byron fell into a deep depression.
Byron: “I felt my life was over. Even though the fact that I knew there is so much more than what we see in front of us in the world, which is also what my book is about, the unknown normal which others call the paranormal, it didn’t help me from getting out of this depression. But it did help me from doing something stupid which people think of when they are very depressed. I said to myself, ‘No, No, No. You know there is so much more in the world. Don’t be stupid.’ That helped me.”
During this same time, Maria Cooper Janis was working on a documentary on the life of her father, Gary Cooper. She asked Byron to write a theme song for the program which he did. Byron was later given the book and lyrics for an off-broadway musical production of The Hunchback of Notre Dame and asked to compose the score.
“I wrote day and night for six weeks. I didn’t know what I was doing,” says Byron. “Yes, you did,” quickly responds Maria. Byron continues, “I wrote 22 songs in six weeks.” The composing helped to bring Byron out of his deep despair and Maria tells me that there is work under way to get The Hunchback of Notre Dame on Broadway. Byron continues to compose.
Treatment and Advocacy
From the beginning, Byron Janis was very forward-thinking in his approach to treating his arthritis. He asked his doctor if he could try various alternative approaches, but always with his doctor’s supervision and approval. He tried hypnosis, acupuncture, and massage. Byron says, “For about three years, it really helped me. Over time, things would work for awhile but then lose their effectiveness.”
Currently, Byron Janis’ pain and disease is under control with the help of a prescription NSAID and the gold standard DMARD, methotrexate. He is under the care of an excellent rheumatologist whom the Arthritis Foundation helped him find after his previous rheumatologist retired.
Maria says, “People don’t seem to be aware, the average person, that there even is an Arthritis Foundation to which they can go to get guidance on good doctors. If you live in [a small town, for example], you’re family internist isn’t necessarily going to be giving you the best advice. Find a rheumatologist who can steer you in the right direction.”
Maria continues, “People are still so unaware. And that’s one of the things I’ve learned from our involvement with the Foundation is to help educate the public about what to do to try to nip it in the bud, if you can, or to get early treatment.”
As is true for many of us living with arthritis, Byron’s family doctor didn’t recognize his arthritis at the time it initially developed. It was in London that they found a specialist who correctly diagnosed his psoriatic arthritis (PA). I asked Byron if he already had psoriasis prior to developing arthritis. The answer was no, so his case falls in the minority 30% of patients who do not develop psoriasis prior to developing arthritis.
Even after working with the Arthritis Foundation for the past 27 years as ambassadors, Byron Janis and Maria Cooper Janis remain passionate about awareness and education regarding arthritis and about encouraging children facing challenges. Near the end of our afternoon, the Janises told me that they are returning to Washington, DC, to attend the Juvenile Arthritis Conference on July 7-10, 2011. If you plan to attend, I highly recommend that you try to hear any presentation which Byron and Maria may give.
In addition to discussing issues related to arthritis and perseverance, Byron Janis was willing to discuss topics of a more musical nature. For a continuation of our discussion, please visit my blog, Brass and Ivory.
More information regarding Byron’s autobiography, the PBS documentary The Byron Janis Story, articles and public appearances is available at www.byronjanis.com. More information regarding psoriatic arthritis.