In Brief

Marfan Syndrome
Stroke 1979
Heart surgery 1991
Heart Attack 2007
Intensive care 120 days
Heart failure

Music and Recovery


I was in Zurich for rehearsals of the Mass of the Immaculate Conception in December 2007.  Listening to it recently I found it rather disturbing: disturbing because at the time of the premier I was dangerously ill in intensive care in Zurich.  The music that I had been working with in rehearsals the day before haunted my subconscious following emergency heart surgery. I was disturbed also by the almost mad daring I had taken with texts from the Hindus, Muslims, American Indians as well as setting the Mass in its entirety interspersed with tantric poems about the Virgin Mary.  Although I found the music beautiful, I was totally unable to judge it.

Josquin des Pres

While I was intensive care I listened to Josquin’s masses and found them as richly varied and magnificent as Haydn’s Symphonies.   I owe a debt of gratitude to Josquin not easily measured.


Bach has always been a source of healing and inspiration to me.   I listened to the Goldberg Variations when I was in intensive care and have been listening recently to the Cantatas and the Passions.  Every moment is an amazement.


I have always loved the nobel femininity of Handel’s music, so eloquently expressed in the ravishing music for the Queen of Sheba in Solomon.  This so perfectly balances the masculine majesty and grandeur of Handel’s great choruses.  He was surely one of the greatest melodists that ever lived.


I have recently been deeply moved by Bruckner’s Ninth symphony, and if I were in better health I would have loved to do something with the fragments that exist of the last movement.   As it is, I can still go on looking at the fragments with wonder.


Marfan Syndrome

John was diagnosed with Marfan Syndrome in 1990, aged 46.  His brother, Roger, had been diagnosed in his 30s, so the family was aware of the rather uncommon condition.

John needed an aortic root replacement in 1991.  Sir Magdi Yacoub was the surgeon, and John’s own aortic valve was resuspended at the new root.  Recovery was slow but sure, and music continued to flow throughout.

John was able to help with public awareness of Marfan Syndrome, and in 2008 Lady Tavener recorded the BBC Radio 4 Appeal on behalf of the Marfan Trust.

Here is a transcript:


Sunday, 26 October 2008

I am speaking on behalf of the Marfan Trust because my husband, the composer John Tavener and his family and our children are affected by Marfan syndrome.

People with Marfan syndrome are classically tall, slim, have very long fingers and feet, sometimes protruding or indented chests, short-sighted and often teased and bullied at school.  The greatest threat to life however lies in the hidden system of the heart and blood vessels which are weak and can fail. Because of this the average life expectancy of someone with Marfan syndrome is still only 44 years.

John grew up unaware of Marfan syndrome and its dangers, only painfully aware of how different he was from other boys. It was a shock to hear at the age of 46, he needed urgent life saving heart surgery to repair his aorta. Knowledgeable and experienced doctors and surgeons saved his life and he went on to marry me, compose beautiful music and have 3 children. Two of our children have the condition but I feel reassured in the knowledge they are receiving care and treatment.

If left undiagnosed, Marfan syndrome can be fatal.  One family tragically lost their son recently at the age of just 22. Over the years doctors had often commented on his flexible joints, pigeon chest and tall, slim stature. He died very suddenly whilst on his gap year in Australia of a heart problem. Only then did his parents learn that he had Marfan syndrome.

Marfan syndrome is a complex condition. The Marfan Trust was founded by patients with the disease, determined to discover the cause and cure.

Money raised is spent on increasing general and medical awareness, and funding vital research studies. We need improved medication and surgery to increase the life span of those affected. The Trust receives no government grants and relies entirely on donations.

Please can you give now either online via the Radio 4 website or by calling 0800 404 8144.  That’s 0800 404 8144.

Or you can write a cheque to the Marfan Trust (that’s M A R F A N) and send it to Freepost BBC Radio 4 Appeal. That’s Freepost BBC Radio 4 Appeal. Please mark the back of your envelope “Marfan Trust” or MT.

Thank You.


more to follow…