I have been visiting Joni for 6 years at L’Arche Portland. We used to meet at the Hands on Hands festival and Dorothy Coughlin encouraged me to visit her and become a friend. I knew we had a feeling for each other from a difficult time in my life. I had been crying in church - my hands covering my face - and she stopped in front of my pew, sat down next to me, grabbed my hands in hers, and looked intently at me until I stopped crying and had to turn and thank her.
I was somewhat apprehensive the first time I came to visit. I am a very verbal and articulate person; how was I going to communicate with Joni? How I was going to be with her and how we would spend the time when I could not articulate my ideas or ask about her likes and dislikes? How could I entertain her when I did not know what her cognition was capable of doing? But Joni is a great teacher. I learned that I just had to listen to the non-words she had for me. Here is a list of the lessons and guidelines on what matters in life, learned from Professor Joni.
- You need to be authentic and develop who you are regardless of other people opinions. Do not conform. On one of my first visits, I picked up a lovely fall leaf during our walk and asked Joni “Isn’t it beautiful?" And she made her usual sign of "disgust" with a loud groan that shocked me, but then I laughed at her courage to say what she felt even if it was different from my suggestion. This has served as a good lesson for me since I am a people-pleaser.
- You can be joyful and sad at the same time. My beloved brother Paolo had just died and I was crying in front of one of the L’Arche assistants, explaining that I was having a bad day. Joni was standing next to us and started howling and crying so loudly that I had to stop crying myself and explain to her *why* I was sad and reassure her that basically I was ok, just sad. She stopped howling.
- Sound/taste/touch are very important and make one feel alive. Joni eats cookies with such pleasure and speed. She makes sounds of wellbeing (mhmmm, mhmmm, mhmmm) when I massage her neck. She takes clear pleasure in listening to music.
- Be clear about your likes and dislikes: is it a "yes" or a "no"? When Joni is presented with a choice, she either vigorously bobs her head up and down or moves it from left to right. Either way, she expresses her choice loud and clear.
- Loosen up. Cry more and loudly. Laugh more. Hug more. Smile more.
- Do not compare yourself to others and do not judge others. One of the first times I brought puzzles to Joni, she tackled the ones she could do and after a few attempts, loudly put aside the one that was too difficult for her. I then tried myself to do the "difficult" one that involved matching the colors and could not do it either. Immediately I judged myself: "Now you cannot even solve a puzzle geared for a 3 years old?!!" But then I looked at Joni. She was not judging me; she was not judging herself; she was busy doing another puzzle and having fun. So I silenced the harsh, judgmental voice inside of me. I put aside the puzzle that was making me feel anxious; I wanted to have fun too! And guess what? No one was looking at my performance, and Joni could not have cared less because she was too busy doing another puzzle.
- You do not need to do anything "special" with others. Being together and receiving or giving love while doing things side by side is what matters. For a while when I first came to visit, I struggled trying to think of ways to "entertain" Joni. Then I realized that she is happy just being with me, coloring or moving pegs to different spots and doing it again.
- Accept what life offers you. Joni has been falling recently and has had to go through periods of forced inactivity. She has been able to accept it and her extra dependence on assistants for support with a positive attitude.
- Enjoy what feels good to you. Joni likes vibrant pinks and reds, funny hats, soft stuffed animals, and red nail polish (green and gold too).
- Be in the moment. When Joni hugs you or colors or eats, she is totally focused on that thing and does not have a hidden agenda when she communicates with you.
- Be aware of other people’s feelings and offer comfort and empathy. Joni possesses a keen awareness of the emotional essence of animals we well as characters in Disney cartoons or coloring books. Her face darkens as she watches the suffering of Dumbo when he loses his mother; likewise, her face gets contorted when she recognizes Cinderella’s stepmother as a villain.
- I think if I have one last lesson that I take from Joni is "Be free in God’s love for you and the validation that you get from this Love that you are ok and enough."
Alba Orsi has volunteered with L’Arche Portland since 2009-10. Long before meeting Joni and the L’Arche Portland community, Alba learned of L'Arche and was influenced through the books and theology of Henry Nouwen. When she discovered that he had visited the Portland community, and seeing his picture at Nehalem House, Alba felt that her involvement in L’Arche Portland was serendipitous and designed to make her grow.