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Last week, as I was sitting in the back of the room at the World Dementia Council Summit in London, a woman about my age stood up to speak. She had recently been diagnosed with Alzheimer’s and wanted the world leaders to hear what it’s like to live with the condition first-hand.
“We don’t want your pity,” she told them firmly. “We also don’t want your fear. All we want is for you to ask us, ‘What it’s like to be you right now?’”
The room fell silent.
This woman’s words really struck me. I’ve been thinking a lot about them ever since.
I believe we all share a deep desire to be seen and heard. We all share a deep desire to be known — for all that we are. We want to be known for more than one disease, more than one headline, more than one decision we’ve made over the course of our lives. And yet, so many of us fear what people will think if we open up and share our true selves.
I’ve had people with Alzheimer’s tell me that they fear telling people that they have the disease. They worry it will change what they think of them or how they speak to them. I’ve heard similar concerns from those fighting cancer, depression, anxiety and other ailments or issues.
“What’s it like to be you right now?” Think about that question. When was the last time you said that to someone, or someone said that to you? It’s the kind of profound and meaningful question that takes us deep into someone’s life, way past the noise and the distractions that live on the surface.
That woman’s words inspired me to ask the people in my life this very question last week. I asked “What’s it like to be you right now?” and “How are you really doing right now?”
I got a few responses from people who said, “I’m fine. I’m good.” Another said, “I’m okay. Well, I think I’m okay. Why are you asking me?” And then, I got some answers that brought me to tears.
Friends shared stories about family fractures, relationship misunderstandings, in-law problems, disease diagnoses… The list goes on. I even had an Uber driver tell me how hard her life is right now because finances are tight and she’s living in an office.
No matter what people said to me, all of our conversations ultimately ended the same way: “Thank you for asking me what it’s like to be me. Thanks for asking how I really am. Thank you for connecting. Thank you for listening. Thank you for hearing me out.”
This effort reminded me that we’re all longing for the chance to be vulnerable and to be heard by another person.
Connecting with another human being is a gift, for them and for you. I think we all instinctually know this to be true, but far too often we get caught up in the hustle of life and forget to slow down and connect with those we love. How precious those moments can be.
As my past week came to a close, I found myself having one of those moments with my eldest daughter Katherine, who just celebrated her 29th birthday. It was one of those nights you couldn’t have planned if you tried.
The two of us sat on the couch by the fire. The Christmas tree was lit nearby and the room was quiet.
My daughter opened up to me about the best year of her life (this year). She also spoke to me about all the lessons she has learned, about how blessed she feels, about how miraculous life can be, and about her belief that her next year is going to be even better than the last.
“Wow,” I thought. “Just wow.”
When she got up to leave, I hugged her tight and said, “29 years ago tonight was one of the best nights of my life. You burst forth into the world and you made me a mother. It felt so amazing at the time and I was so happy. Little did I know that 29 years later, that feeling of love for you would keep getting more and more amazing.”
I told my daughter how blessed I felt that she and I were able to sit and share with each other how we’re doing and how we’re really feeling. These are the kind of moments that a mother will cherish forever.
As I went to bed that night, I thought back to what that brave woman said in London. “All I want is for you to ask, ‘What’s it like to be you right now?'”
I’m grateful for her voice because it pushed me to have meaningful conversations this week, both with people I love and even with some I don’t know all that well. They were the kinds of conversations that make life awe-inspiring.
My hope is that you, too, have a few meaningful conversations this holiday season. And, if you happen to meet someone who tells you they have Alzheimer’s, cancer, depression, anxiety or something of the like, I hope you will be brave enough to ask them, “How are you doing? What’s it really like to be you right now?’”
Dear God, this world is filled with so many people and so much good, yet it’s easy to slip into the feeling that I’m all alone. Help me remember that I am not alone. Help me remember that there are people who care. Help me to be a beacon of light and understanding for others as well. Amen.