These days we are most specially thinking about our dear friend Bego, one of the souls who gave shape to Moving Your Soul – Another way of living with Alzheimer’s. We want to dedicate a special memory to her, as it is a year ago now that she left us. We herewith copy a text that she published in the blog she wrote for the Economist, in a post that specifically spoke about Moving Your Soul and in which she explained a very endearing anecdote. She left us, but she also continues to speak to us from what remains, from what she left behind… and we will be forever grateful…
“These weeks of absence from writing my blog, have been dedicated to ‘Moving Your Soul. Another way of living with Alzheimer’s', a web project, www.movingyoursoul.com, we have just launched between four female coaches committed to making the world a little bit more of a comfortable place to inhabit. On this website, a lot of testimonials share their experiences of communicating with their family members who are affected by Alzheimer’s or other dementias. What is innovative is that this website emphasizes maintaining communication and a relationship with what remains, not what has been lost through dementia.
I have thought so much about this proposition and, as I need to experience in order to gain insight, I headed to various care homes and centres to find out about the reality of Alzheimer’s and how some people manage to overcome the barrier of what is so terrible and embark on a relationshop with their family member. Some days I would return home happy with the progress of my own research, and others I would return broken by having witnessed scenes of such pain. And one day I met a man, Antonio S. who every afternoon went to visit a woman. They used to be lovers when they were young. Then, he emigrated to South America and continued his life, until he retired, childless, unmarried, and decided to return to Spain.
How thoughtful you are. Both times I have seen you, you have brought flowers!, I said to him one of the days we shared the lift. Are you visiting your wife?
No, and I’m not visiting, he replied serenely and with a very clear gaze. I come to be.
For an instant I thought of the film ‘Son of the Bride’ and felt a tear brimming, and I suddenly asked him “What do you mean by that?”
It’s the difference between coming to see her or to be with her, in the place where she is now, he replied simply.
Please forgive me, but I feel there are contradictions on this point because I don’t know if the woman even knows where she is, I openly declared my doubts.
I have nothing to forgive you, - he said expansively - Only if you listen, touch, feel, be, can you communicate with people who suffer from this illness. They haven’t gone, nor do they wander around like penitent souls in Limbo. They are still here or do you think they are invisible, he raised his voice in protest and waved his hand. It’s like a painting, sometimes the painter doesn’t need to fill in all the outlines to paint a portrait. And yet, the spectator never feels that any lines are missing to complete the work.
I felt a little breathless for a few minutes as I listened to this man of scant height yet immense wisdom and then with a small voice, I said: Is that how you see your loved one?
Yes, it is. The flowers make her enter into the beautiful love story we experienced together and which we have somehow resumed. For me, she is still the brunette who used to sing from the window of her house, back there in Lavapiés. And I don’t need any more lines to know that the beautiful women I once had to leave, is still here.
There are few romantics like you left. Please allow me to call you Antonio, I said.
I only expose it, everyone else silences it because it’s frightening to experience reality as it is. Crude, tough, tremendous, but also very powerful, very beautiful. You have to want to see it. This is what the geniuses do. Transcending moving from where they are, like Picasso. Excuse my simile, but this is my passion, my profession. I was an art history teacher for 20 years.
Do you think we could all experience what you speak of?, I remained curious and hooked on his wisdom.
Yes, I am sure of it. Of course, it requires honesty with oneself and parking our ego. The one that is full of masks and stereotypes. But look, we will all be old one day, decrepit, ugly, wrinkled, forgetful, sick and we will still continue being people. Although in order to remain so we need to be seen, listened to, dignified.
María is the luckiest woman in the world, having a friend who actually sees her, the way you see her.
My regret is not having taken her away from her parents home and taken her with me to Venezuela. So my advice is to always enjoy what remains and what is there right now, as it will always be much more than what has gone. He left the lift and headed for the lounge, where the people with Alzheimer’s were.
Standing in front of Maria, dressed in blue and sat on a chair with her head to one side, he gave her a white lily and said to her:
You are the love of my life, brunette..