My Sister Eileen

In July 2021, my sister Eileen, the youngest of nine children, died. She had Down’s Syndrome, and Alzheimer’s disease had whittled away at her for several years. The following is my eulogy for her.

On behalf of the family I want to thank everyone for coming, and especially those who had to make last minute work or travel arrangements.

Eileen Marie Johnson was the youngest of 9 children. Our family was so big it was divided into two parts, the big kids and the little kids. I was the oldest of the little kids so wound up spending a lot of time with her.  It’s a great privilege to speak to you today about her.

When she was born, Mother came home from the hospital, but Eileen stayed a little while longer.  Of course, we were perplexed at this.  Dad called us all together into the living room and explained that Eileen was expected to be impaired but by how much was difficult to tell.  He said the doctors advised that she be sent to an institution directly from the hospital. We protested and all agreed with Mom and Dad that they should bring her home instead. 

Growing up, she and I did a lot of fun things together: listening to music, going to the park to feed the ducks, going for long car rides. She loved music: Pete Seeger, Raffi, polkas, big band. She loved to dance. As soon as the music started playing at any event, she was off and running. She liked diet Coke, bright fuzzy and spangly tops, hairbows, making her art, and bowling. She was very strong and liked to arm wrestle. She loved to sing, especially in church, usually several beats behind everyone else, and louder.

Sometimes she’d quietly hold what seemed like entire conversations with herself, though what she said and to whom she was saying it remains a mystery to this day. Once I was walking past her as she was hunched over her drawing when I heard her say “I’m tired”. Then a beat later, before I could reply, she said “Yeah, so am I”.

Eventually, Eileen went to live with our sister Nancy and her husband John. Routine was important to her. For most of her life she was able to care for herself in getting bathed and dressed and ready for work. She was stubborn too, and there were many negotiations to get her to do things. When Nancy was trying to get her to eat healthier food or get a shot, at some point in the negotiation Nancy would bring up my name. Eileen would say to herself  “He’s a doctor you know” and then give in.

Her nieces Mary Elizabeth, Clare, and Patty grew up with her of course. She was part of their family from the beginning. When I say the beginning, I mean it. John Ashley tells me this story: “Well I always think of Nancy and my first date. I went to pick up both Nancy and Eileen to go to the Ritz ice cream stand at the fairgrounds.  When we got to the car Eileen stopped outside the front door and with her thumb pointed to the back seat and told Nancy to get in the back. She sat up front with me. I pretty much knew who was running the show from that point forward.”

As Patty says, ”She was always protective of us and watched us like a hawk. Whenever we had a babysitter, she would sit at the dining room table to do her art instead of going to her room, just to make sure we would be treated right and were safe.”  Mary Elizabeth talks about how Eileen would use the money she earned at the sheltered workshop to treat the girls to McDonald’s or to bowling or a movie.

She enjoyed being mischievous. She would never finish a little bottle of water, but for some reason could always finish the bigger bottles of Coke. Once she also said she would sue Clare and Patty for telling her she was using a dried up marker for her art. Patty says she was one of the funniest people she knew. She often piped up with a zinger even when you thought she was busy doing her art and not listening.

In many ways she was very limited. Yet in several important ways she was closer to perfection than you or I. She was never bitter or resentful. She was not cynical. She didn’t hold grudges, she had no regrets, she didn’t lie. She was not capable of hate or resentment, or even disappointment with herself. It was as though she had never left the garden of Eden. She certainly never knew envy or the other deadly sins. Well, maybe anger a little bit, like when she’d have to go to the dentist or the doctor, and she’d use some salty language she learned at the sheltered workshop, followed later by profuse apology to the nurses who had been holding her down: “I love you, I love you”

Eileen was emotionally very intelligent. Her intuition was always on point. If someone was upset or crying, she mirrored that emotion. Her little nose would turn cherry red and she would tear up and give them her hard “Eileen hug.”  At summer camp,  there was a little boy on her bus in a wheelchair who was extremely compromised. She made him her pal and looked out for him. One day she came home from camp upset because somebody had told her she was handicapped. “I’m not handicapped. Robbie’s handicapped.” What she meant was that Robbie couldn’t walk or talk or see, and she could do all of those things.

We judge ourselves and others so harshly sometimes. That is not the way it was with Eileen. One of the almost magical effects she had on people was to make them feel happy and relaxed just to be in her presence. She trusted everyone she knew, and people sensed that immediately. As her niece Carey points out, Eileen had an amazing ability to light up a room without even being present. When family and friends tell stories about her, you can see the delight on their faces. For those of you who never met her, watch people today when they tell a story about her and you’ll see what I mean.

There was something almost mysterious going on there. How was it that a person who was so limited in so many ways nonetheless could bring such joy and happiness to everyone around her? Why, as a kid myself, squiring her around town, why was my predominant emotion - pride? I was just so happy to be seen with her. We measure ourselves by our accomplishments, our bank accounts, our titles, our power and Eileen had none of those things. Yet I was, and still am, extremely proud of her. I find that interesting to contemplate, because it doesn’t line up with the way the world teaches us to value ourselves.

When Eileen was born, it must have seemed at first like a misfortune. But that is not what it turned out to be. Instead of being institutionalized, she became the center of the family. It is a profound reminder that the full meaning of an event depends not just on the past and present, but also on the future.

I know that Eileen helped me learn how to be a good father, and I know I’m not alone in feeling that she made me a better person. Eileen loved us, just as God is said to love each of us, unconditionally. The ability to do that dwarfs all the other gifts that she could have been given.

Once again I want to thank everyone for coming. I do want to share one last image. I first encountered it in the writings of George Fox, the founder of the Quakers. Fox was in some ways a mystic. One day he was lamenting the state of the world and people’s bad behavior when he had a vision: “I saw that there was an ocean of darkness and death, but also an infinite ocean of light and love, which flowed over the ocean of darkness. And in that I saw the infinite love of God.”

I believe that Eileen came from that ocean of light and love and has now returned to it. Indeed, I believe that her purpose here on earth was to give us a glimpse of that world. In many ways, she represented the best of human nature. Now that I think about it, that’s why I was so proud of her.