The Blue Sofa

A FEW weeks ago, I was invited to the public presentation of a new book. I was sort of dragged along to the event by one of my fellow friars, not knowing anything about the publication let alone its author.

As it turned out, the publication made a deep impression on me. It caused me to meditate on the gifts of life, health and faith. The book is called Sul mio divano blu (On My Blue Sofa), and is a collection of meditations by the author on her daily life, on love, and on her moments of joy and discouragement.

The author, Laura Tangorra, was not present, nor could she have been present, because for the last 17 years of her life she has been living with ALS (Amyotrophic Lateral Sclerosis), forcing her to spend most of her day on a blue sofa.

ALS is a neurological disease that causes muscle weakness and impacts on physical function. It is a motor neuron disease that causes nerve cells to gradually break down and die. The disease often begins with muscle twitching and weakness in an arm or leg, or sometimes with slurry speech. It gradually affects one’s ability to control the muscles needed to work, speak, eat and breathe. ALS can’t be cured and eventually leads to death. However, it doesn’t affect one’s sensory organs and the ability to think, so it is possible to remain actively involved with family and friends. And Laura, even though confined to her blue sofa, continues to be active as a wife, mother of three children and writer. She has lost control of her vocal chords and is therefore unable to speak; likewise she cannot use her hands to write, but she can communicate and write through a machine which is able to transform the movements of her eyes into sounds. In other words, the disease has robbed her of the capacity to articulate sounds and to write with her hands, but a computer has come to her aid by allowing her to communicate with her loved ones, surf the web, send emails, contact friends and finally write books. Amazingly, On My Blue Sofa is merely the last of a long list of publications.

The story of Laura Tangorra impressed me so much that I decided to travel all the way to Monza, about 240 km from Padua, to meet her.

“You know Fr. Mario,” she told me, “to spend your life on a sofa allows you to see the world from an entirely different angle, and this gives a whole new meaning and flavor to every aspect of life. ALS has forced me to look at life with greater attention, to live with greater intensity, and to give immense value to what I formerly tended to overlook. It is like sucking a candy for a long time, only to realize that you still have to unwrap it. So you unwrap it and you finally manage to savor it, realizing that you can no longer do without that intense flavor despite that fact that it will soon be dissolved in your mouth… In any case it’s not always necessary to travel with a rucksack on your back to really get to know what life is about… there are things that can only be found inside us, not outside, in the world.”

A journalist once asked her, “Were you ever tempted to put an end to your life rather than to go on living this way?”

Laura answered quite candidly, “I know that many people would be surprised, but I can honestly say that never once have I thought of ending my life. If you had asked me this same question some 17 years ago, I might have stated that death would have been better, but then I would have answered only in a theoretical basis. I would have been talking about someone else’s life. When we talk about other’s people lives we can easily make rash, shallow judgments. Certain things can only be understood by actually experiencing them, by going through them, when there is no way out from them.”

A close friend of Laura has written that in her case, “ALS blew on a fire in order to extinguish it, but instead ended up, against all expectations, in intensifying it by giving it more oxygen. It is an example of those complete paradoxes that can only find their logic within the domain of love.”

Thank you Laura for the great lesson you are teaching us; especially in this month when we are celebrating the World Day of the Sick. With all the friars of the Basilica of Saint Anthony we will pray for you and all our suffering brothers and sisters, as well as for those who work with competence, responsibility and dedication for their care and daily well being.