Watch a conversation with Compassionate Care ALS Founder/Executive Director and author of Sacred Bullet, Ron Hoffman, and New York Times best selling author, Lisa Genova, below:
I received the following email last week:
Hi Ron, I reached out to you six months ago when my husband was diagnosed. Everyone told me CCALS was fabulous, but I just couldn’t set up a meeting. Now I need to. So many questions, concerns and fears have come up since I first wrote. Hope to see you soon.
I get a lot of messages like this from folks who have heard about us, know they need the support, but for a variety of reasons, are unable to take action. First of all, it’s important to acknowledge the trauma of receiving that diagnosis. This is what’s known as a “shock trauma” and it is devastating. Most people, to one degree or another, shut down. They freeze, just like a gazelle on the Serengeti Plain who finds itself in the jaws of a cheetah. It’s a natural response to go completely limp.
In nature, however, once the initial danger has passed, if the animal survives the attack it shakes it off and gets back to its life with no lasting effects. It’s not so easy for people. We don’t know how to process the trauma and can often shut down—like Janet—for many months. Some people stay that way through the entire illness. That can make things really hard.
I had another gentleman contact me for a second time, wanting to know how to convince his dad to see me. “I don’t know what to do, Ron. I’m sure that speaking with you would be helpful, but he resists the idea every time I bring it up.”
“Does he keep his doctors appointments?” I asked.
“Yes, of course.”
“Then tell him I’m a doctor!” I said, joking.
It is kind of funny though, how the mind works. People will religiously go see their doctor hoping for some kind of a fix, because that’s what doctors are supposed to do. Our services are harder to understand—not quite as mainstream—so there is resistance, even though we can really make a difference.
Again, I want to acknowledge the severity of what we are dealing with. Not long ago I read somewhere, “Even after the ALS diagnosis, you are still the same person.” I beg to differ. You are not the same person. Your life has been radically altered, turned upside down, and who you were is no longer who you are, and who you are becoming. I believe it is important to accept the new you as soon as possible, and begin exploring the world that has now been opened up to you. Yeah, it’s scary, and not what you wanted, but so many potentialities and possibilities are now available. Why not explore them?
That’s why, in my perfect world, people would get connected with us right away to help them through the initial trauma of the diagnosis. This way we can get things started on a good path, and avoid a lot of haphazard information and advice given from unreliable sources. What I often say is, “I’m not here to tell you everything you don’t want to know.” Surfing the Internet, for example, reading random articles, is often a recipe for prolonging and intensifying the initial trauma. It can add so much unnecessary anxiety.
It’s a timing issue, and a very important one. Think of it as a long walk through the wilderness. There are ways through that are much smoother and enjoyable, ways that can be incredibly beautiful. Then there is bushwhacking through the bramble. That’s what can happen when those first few steps aren’t well guided. That’s why, in my perfect world, my staff and I are there for those first few steps. Somebody to hold your hand and say, “Take it easy,” and, “You don’t have to rush into anything.” Rather than somebody who jerks your arm and says, “Well, you better get to that hill over there before sundown or you might get washed away in the flood.”
You see where I’m going? The art of walking this path is very much about timing. What to do and when to do it. What to learn about and when to learn it—and more importantly how to learn it. That’s our specialty. We’re not here to tell you what you don’t want to know, or what others think you need to know. We are here, however, to ask questions, show up with our radar fully engaged, and really listen, and find out where you are. Exactly where you are. We can also use our experience to anticipate needs that may not be in your awareness, but might be helpful. And then invite you to learn what may be around the bend, and how to prepare for it, and maybe how to embrace it and grow from it in the best possible way.
The only reason we can do this is through our personal work. We have trained and devoted ourselves to a path of healing and awareness. To the best of our ability, we have dealt with our own trauma and woundedness, and don’t bring them into our relationship with you. We arrive with open hearts, and the freedom to maneuver. We show up with clarity and a clear mission to serve. Simply put, we do our best to bring compassion, care and love.
To the best of my ability, I have become familiar with my own mortality, and have encouraged my staff to do the same. We do not see ourselves as all that different from our friends with ALS. We just happen to be healthy at the time, knowing that won’t always be the case, and accepting of that. As I have said many, many times, you can’t show up for someone with a fatal illness if you have not faced your own mortality, truly faced it and reached some level of acceptance. Someone in denial about his or her own death will unconsciously cause problems for the individuals and family members facing the real thing. There’s no getting around it.
That’s why I’m on a mission to bring meaningful end-of-life training to those in the healthcare profession. It would bring so much more compassion into the process. Rather than seeing the person who is ill as “other” and someone different or odd, you can see yourself in them. What would I want to hear right now? What would I want to know? A very different perspective.
I get asked by people all of the time, “Ron, what is it that you do?” It’s a big question. Difficult to capture in a few sentences, but two words sum it up: a lot!
I experienced this wondering about our work throughout the construction of our new education and retreat center. Contractors and subcontractors would show up on the job site, aware that they were supporting a unique organization, but not quite sure what made it unique.
On May 5th at the Sea Crest Beach Hotel, I had a chance to set the record straight. We had gathered there with our general contractor, Ralph Cataldo, his team, many of our families, past and present, and the 78 contractors and sub-contractors who had supported the project. The facility was nearly complete, and it was time to honor those who had been so generous with their time and resources.
I spoke about our holistic, relational model covering every aspect of ALS care, our focus on quality of life, and when needed or wanted, end of life. I shared that we loan vans to help people get to appointments, and equipment like wheelchairs, lifts and ramps. I talked about our No Red Tape policy, our Cultivating Compassion workshop series, our gatherings for the Men and Women of ALS and our Caregiver to Caregiver events.
I mentioned our augmentive communication expertise and our government affairs and social work expertise, how we help people navigate the complexities of Mass Health, Medicare and insurance. I mentioned our House Call program with Mass General and our work with the UMass Medical School.
As I was wrapping up, I looked around the banquet hall at the 200-plus guests in attendance. The faces of those who didn’t know us looked back at me with surprise, kind of like, “I had no idea.” When they came forward to receive their beautifully etched glass awards from Ralph and I, these hardworking men and women were beaming. It seemed to me they were filled with a deep appreciation for what their labor would mean for those our facility will serve.
And still, the question lingers: What do we do? And perhaps more importantly, Why do we do it?
Not long ago, I received an early, 8 a.m. text from Will, son of Connie, “Please call.” I called Will and he said Connie had just passed away. “I’ll get there as soon as I can,” I said. Several hours later, I pulled up to the home and was greeted at the door by Will. “Ron,” he said, “so good to see you. Mom had a gentle, peaceful death.”
I gave him a hug and said I was grateful it went smoothly. In my heart, I wasn’t surprised. Connie had a strong ability for self-inquiry. She had openly faced the reality of her dying, in a very conscious way. She was prepared to go. A few days before her transition, she had taken off her rings and given them to her husband of 60 years.
“I need you to have these now, Tom,” she had said.
What a beautiful and symbolic act of letting go, a rite of passage. The trappings of this life cannot accompany her into the next. She must be light and free and ready for whatever lies ahead. I bow to you, Connie, for the wonderful gift you gave to your family.*
I waited with Will for the funeral director to show up and take Connie’s body away. Tom was on the back porch working on the obituary with his daughter-in-law, Bonnie. We were there together, being with dying, not saying much, taking it all in—bearing witness and holding space, as I call it. Just being. It can be incredibly powerful in times such as these.
This is an example of the intimate work we do that is often unseen. Maybe our presence brings some light into a dark situation. It’s understated and behind the scenes. I call it stealth caring. It’s how we move in and out of the lives of the 600 or so families that are in our circle of care. It’s an enormous number for an organization of our size.
When I left Connie’s family and headed down the road, my phone rang. It was a man from New Jersey. They had gotten the diagnosis that Shirley had ALS, and someone had told them about Compassionate Care ALS. My tears were not dry yet from saying goodbye to Connie, and now I was greeting Shirley and her husband, trying to bring some calm to the chaos that had just arrived in their lives.
THIS IS WHAT WE DO.
This is how a day can go, with hundreds of families at various stages of the process, having needs unique to those stages, and most importantly, unique to them. No two families are alike. No two people will walk with ALS in the same way. What we bring, and what makes us unique, is that we listen, we sense, we feel into the situation, and we do our best to give only what will serve. No more and no less.
I like to call it dexterity, a certain kind of nimbleness. It’s like you’re in a ballroom and there is a waltz going on, and everyone wants to dance with you. How do you move from one partner to the next, look them in the eyes, make that connection and begin to move together? How do you do it without stepping on toes? Without going too fast or too slow, or missing the beat?
I felt this idea of a really full dance card at our first annual walk, the Stroll & Roll fundraiser, May 18 at Bourne Farm in Falmouth. Folks were rolling and strolling and mingling about, and my team and I were connecting with everybody in sight! I could have walked the course three times and not gotten the same workout I did having all those conversations! And there were so many people I missed even seeing.
There were families from years past who I had not seen for a long time, and yet have remained our friends and supporters of our work. There were new families we had just met as well. Everyone had come together in support of one another and our noble cause. Their support today was planting the seeds for care that would be needed by the families yet to come.
I recently met with Kelli, who had been with us through her dad’s experience, coming up on ten years ago. She had taken some time away to heal, and now she was back. She was ready, ready to pay forward, if you will, what had been given to her. We sat and revisited some of the experiences we had gone through together with her dad. Quite a journey. The big flow of compassion, moving in unseen ways, had brought her around like the Gulf Stream, flowing along the coast of Cape Cod.
It’s those relationships that allow us to do what we do—what we have to do to sustain our work. We have to be flexible and nimble, weaving in and out of lives, showing up for those in need and also showing up because we too have our needs.
Buddhists might call it skillful means or equanimity. We feel our feelings while not being attached to them. We see them as fluid, not static things, always moving, and so we move through them too, smoothly and gracefully to the best of our ability. We stay light and limber, not dragging our personal baggage around from one place to the next. For me, that’s a very important teaching. It’s how we walk along with our families as best as we can, staying present in the moment.
THIS IS WHAT WE DO.
Through our work and how we operate, an amazing thing has come to be. It’s the Heald Center, for education, retreat and sanctuary. I believe it is the only facility of its kind in America, perhaps the world, dedicated to those living with ALS, and those caring for them. It is here and nearly complete because our community got behind the vision, because you all recognized what it would mean to the individuals and families living with this difficult disease.
The retreat center is waiting there like a loving mother with her arms wide open, welcoming you home. The image reminds me of my own mother, who held me and protected me to the best of her ability when I was a boy. She could only do so much, because she didn’t have the resources, didn’t have the teaching, the community or the financial backing that would have made her stronger.
So too, our sanctuary here in Falmouth needs resources to deliver its gifts. It needs the comfortable and welcoming furniture that makes us take a deep breath and settle in. It needs the staff to take care of all the details. It needs a nest egg in the bank so that money is never an issue for those that need its love.
My point is that we’ve got a wonderful facility, built with love and incredible talent, but our mission is not complete. We need to make those finishing touches immaculate, and then staff and finance the facility so that it can fully serve our friends and families living with ALS. We are now finishing up our capital campaign, and building a solid, sustainable base that will keep our center going strong for years to come.
Many of you got us this far and I am forever grateful. We appreciate your support now, and in the future.
*I read this part of the story over the phone to Will and Tom and was surprised when Will said, “That’s not quite how it happened, Ron.” Really? “Yeah, Mom’s fingers had become swollen and she couldn’t get her rings off so she asked us to call the fire department to cut them off.” He went on to compliment the fire fighter for doing so in a kind and gentle way. After that, Connie placed the rings in her husband Tom’s hand for safekeeping after she was gone. That in itself I find profound and symbolic, and a testament to their 60-plus years of marriage. I was glad they clarified that for me. It’s a good example of how we sometimes hear things differently than how they actually happened. In this case, I was there tending to four people and in the midst of all that heard the story in a certain way, and didn’t take the time to inquire further. A good reminder that awareness and perception are so unique to every individual in a given situation.