Over the course of 20 years doing this work, I continue to be reminded how very important language is. The words we choose to say and when and how we say them make a tremendous impact. When used appropriately, words, ideas and information can be illuminating, comforting and freeing. When used carelessly, or from a place of insecurity, our language can cause needless harm.
For example, some families are not interested in talking about death. They want to focus on living, being excited about a new integrative therapy, hanging out with their children and making every moment last. Our staff emphasizes relationship over information, using our natural instincts to go where people want to go. It’s about doing no harm. Communication is a slow and subtle exchange as we navigate the rapidly changing terrain of ALS.
All too often, I encounter healthcare professionals who, in my opinion, are inexperienced or insensitive to helping people navigate a serious illness or end of life. If people in the field have such a hard time, imagine how difficult it can be for family and friends who have no training? I was there myself in the early days of my tending to Gordon Heald. Gordon taught me the basics. I will try to do the same for others.
I do my best not to ask people, “How are you doing?” or “How are you feeling?” It can often bring up the response, “Well how do you think I’m doing? I have ALS.” Questions like, “How’s your day?” are often the source of an upset right away. I hear all of the time how these questions can adversely affect people, and I try to avoid them.
I start out by saying, “It’s really nice to see you.” If they are working or involved in some project, I ask how that’s going. Effective communication with those in difficult circumstances is about knowing who they are. It’s taking the time to make a connection, then noticing what’s going on in the moment. It’s looking around, being curious about their lives, careers, family, hopes and dreams. Engage with them about who they are. There are no set rules here. It always looks different. Many people are not in a frame of mind to speak about the disease—and honestly, it’s not necessary.
In the art of language, the central element is the ability to listen. Just show up with an open heart. If you are new to being with a friend, relative or client with a terminal illness, just be honest. Take the risk to be vulnerable. “I don’t know what to say,” is a great place to start. Be with whatever comes next, no agenda, nothing to fix or figure out. Open up and relax. Take a deep breath. If no words are spoken, honor the silence.
If the conversation moves into difficult terrain, slow down and don’t make assumptions. Ask permission before asking a probing question. Ask if it’s okay to explore this or that. Often I will ask, “Do you want to know what I know?” Asking permission is novel, but I don’t think it should be. It comes down to empathy and awareness. Put yourself in the other person’s situation. Be sensitive. Learn to know when no means no and move on.
One of the ways I hope to connect and bring calm into people’s lives—and possibly make them curious—is to say, “I’m not here to tell you everything you don’t want to know.” I say it because it expresses a different point of view. Usually those with knowledge seem compelled to express it, whether wanted or not, relevant or timely. My emphasis is always on the relationship. Developing trust and rapport become the gateways that allow deep and meaningful conversations to emerge over time.
It’s not about having answers—even if you do have valid information to share. No two people are alike. No two circumstances will be the same. One person wants to know everything, talk about all of the potentialities and possibilities right away. Another person wants to take them one at a time as they arise, or not at all. Gordon was a wonderful example of a man who made his choices by never making them. It’s a way I often see and have learned to honor.
Last week I visited a woman living in a facility, on a ventilator, unable to communicate. Her daughter arrived and I asked her how she thought things were going with her mom. “Ron, it’s in God’s hands,” she said. “That’s what she’s always believed.”
Okay, that was my cue. I heard the sentiment under the words. She wasn’t open to talking about end-of-life possibilities. Fine. I didn’t bring them up. I did not know this family well and had not had the chance to speak with them about quality of life, which is an important part of the discussion. All I said was, “If things shift and you aren’t sure, my team and I are here for you. You don’t have to make the decisions on your own.” Just knowing that you’re not alone can make all of the difference.
Remember, communication should be on the terms of those in the situation. This is important. We enter the space with humility. We enter in the spirit of service, in the spirit of bearing witness. This is a practice in awareness. We are learning to be sensitive and compassionate, to leave our personal baggage at the door.
If you really want to show up and be of service, the most important step is what you do before you arrive. Take a look into your own heart, into your own mortality and fears. Feel that deeply. Walk into the fire of your wounds and uncertainties. Consider your final days. How do you want to die? What are the blessings you wish to leave behind? Take time for self-inquiry and it will make a world of difference in how you show up for someone with ALS or any other fatal illness. It’s a never-ending process of self-inquiry.
Because language is so important.