Not long ago, I was reading a post from a prominent advocate in the world of ALS and he was speaking about his caregiver in terms I found troubling. It was as if he was totally different from his wife because he had ALS, and he was somehow powerless to know her needs or struggles or be of service to her. He was the one in the struggle of a lifetime, not her.
This is a perspective that I find all too common in the dynamic between caregiver and the one who is ill. There is an incredible imbalance often present that diminishes the humanity of both people involved. I speak of this in terms of a couple, married or otherwise, which is usually at the core of the ALS picture. The imbalance I am referring to becomes a one-way circuit, a taker and a giver. What I think we’re looking for—and what I have seen work beautifully well at times over the years—is something with mutuality, going both ways. In the best of circumstances, what emerges can be called a blessing circuit. A blessing circuit is much more like a circle than a straight line.
This idea of a circle, a system in which reciprocity is at the core, is what I would call “co-caring.” One person gives something; the other person receives; he gives something in return, the previous giver receives the gift, and so on. It’s not like a tit for tat or quid pro quo. Sometimes many gifts are given by one person before something returns. When co-caring is in place, a quality of trust and peace can become the norm. A knowing sets in that I too will be cared for, even though I’m doing a lot of giving right now.
I saw this illustrated incredibly well by my good friends, Ron and Mariah, during Mariah’s 37-year journey with ALS. Ron made it clear to Mariah that he would be there for her when he proposed marriage the same day she received the diagnosis. Talk about a statement of caring and love. Along the way on their long journey with ALS, Ron hit some tough patches, times when things got way too hard.
He had thought he could do it all, that he was the rock, and he didn’t have needs and should be able to do everything himself. Mariah was a gestalt therapist, a sensitive and intuitive woman. She could often tell when Ron was struggling, and she went into co-caring mode, encouraging him to be gentle with himself, to show self-compassion when he wasn’t at his best.
She also encouraged her husband to develop his capacity to receive, to really let it sink in when someone affirmed him for the selfless care he was giving, or when she or someone else told him that they loved him. “I learned to really pause in those moments and receive the blessing,” Ron says, “to really let it sink in.”
These acts of self-compassion and co-caring are so very essential for anyone who wants to navigate life with ALS in the most imaginative and joyful way possible. Otherwise, it’s easy to get consumed by the relentless pressure of a sometimes rapidly developing disease. It’s easy to fall into the trap that Ron describes, of feeling like the rock, and we will do it all ourselves. All too often I’ve met a married couple that is going to take this on without any help. They send me on my way and maybe I don’t see them for a couple of years. No question the person living with ALS has changed, but what is often chilling is how devastated the caregiver sometimes is. They have honestly become but a shell of their former selves.
It’s nobody’s fault. There’s nobody to blame. This was just what they were comfortable with and how they had done it before ALS. That’s why I continually harp on the importance of seeing an ALS diagnosis as a challenge to live our lives in a different way. What used to work will not be enough anymore. The go it alone, rugged individualist is a way of being that isn’t capable of addressing what lies ahead. And honestly, there’s little to be gained even if you could.
I’m remembering another couple, Doug and Patty, who did co-caring beautifully during their journey with ALS. Patty is currently on our board, and Doug served with us while he had ALS. He was very determined to care for Patty throughout his illness. I marveled at how he tended to his wife. He made sure she was cared for and had the help and support she needed. He made sure to hang out with his friends, take his time away so she could have her time away from him to do what she wanted to do. That, to me, is love. That’s co-caring.
It’s learning how to consciously carve out those times of solitude for one another, whether it’s taking a walk or a roll in your chair, finding a beautiful spot in nature to be in and observe, or listening to music you love or reading a book or being in a place of prayer. These are the ways we co-care, by encouraging our partners to find these sacred times and places. So too, we look for those special times we can share as well. Sometimes that means leaving the words and ideas behind and simply being together in a place that you both love. Just feel the love flowing between you.
I was driving around Falmouth the other day and felt like I had dropped into the middle of a sci-fi movie, kind of like The Day the Earth Stood Still. The streets were empty—an eerie stillness—like I was the last person alive on earth. I knew intellectually what was going on, but in my heart and soul it felt like I was out in Death Valley again, doing my solo fast in the desert, alone with my thoughts and feeling, four days and nights in a row.
I got out of my car to walk around and the air was uncharacteristically clear and fresh. It was like the earth had taken a big sigh and shook something off and stood up a little taller. Isn’t this something, I thought, this freshness while everybody is inside, life put on hold, waiting out the sometimes deadly virus spreading around the world. Wouldn’t it be something, I thought, if this pandemic served as a wake up call to the world, to change our ways and live our lives in harmony with nature? Wouldn’t it be something?
I’ll be darned if it didn’t start snowing. Barely a hint of winter all season, and now, creeping up on spring, a brief snow squall. How incredible. How magical—and yet strange, another scene in this new sci-fi movie reality we find ourselves in. It’s kind of biblical, almost like a prophesy. I cannot help but feel like a door of perception has opened, and we’re being asked to walk through.
I was reminded of the phone call I had not long ago with a new family who just received a definitive diagnosis of ALS. They had been holding out hope that it wasn’t (though they suspected) hoping still that it might be something else, and just how crushing it was to be told, no, it’s ALS. The uninvited guest had come knocking on their front door and it was not going to leave.
Under normal circumstances I would have again visited them in their home, bearing witness to their circumstance, providing a calm and open presence, but I couldn’t go. On the phone I let them speak and listened quietly, and then I said, “I have a hunch you have a lot of life ahead of you. This is what I see. You will adapt and continue.” Intuitively, I feel they were comforted by this, which warmed my heart.
My staff and I want all of you to know that we are still here for you. We are working regular hours from home, and when called upon, delivering durable goods to the homes of our families. Regretably, we can’t go in and do installations, or give instructions like we usually do. We are taking the time to personally call, Facetime, Skype, conference call, text or email every one of our 600-plus families to check in and see how they are. We are staying tight with Zoom video team meetings, and conference calls, at least once a week, and supporting each other in ways we hadn’t always considered before the new reality set in.
In some ways I feel like COVID-19 is providing the entire world a glimpse into the reality our families with ALS have thrust upon them. You all know what it feels like to have life turned upside down, to be going along in your normal way when suddenly life as you have known it has ended. You’ve learned to become resilient, flexible and able to adapt to every new development that occurs. You’ve realized that life is indeed short. The small decisions we make every day, based upon the “new normal,” are important—that little bit of extra kindness, that opportunity to express your love, that book you’ve always wanted to read or that place you’ve always wanted to visit.
You all know what it means to have your capacities reduced. That’s what ALS does. That’s the hard part for the physically healthy and fully functioning right now. They are generally unfamiliar with having their capacities reduced. Social distancing, for example, is another word for isolation, a softer way to put it. You shouldn’t go there. You can’t do that. These are the restrictions that individuals living with ALS have to consider all of the time.
Yes, we are isolated, but that doesn’t mean we have to be lonely. It’s a matter of perspective. If we get too identified with being lonely it can descend into depression. That will only make the current situation that much more difficult. Rather, I suggest embracing the current reality as an invitation to solitude.
Again, I am reminded of my time in Death Valley, alone in the desert. This is what can be thought of as conscious solitude. I chose to be there because I wanted to test myself. I wanted to see who I was without the usual things to prop me up—the job, the things, the status, the activities. I wanted to get to the core of who I am, what I’m about, why I’m here and what my purpose is. I had all the time in the world to do that and because of it, my soul could relax and open up. The Irish poet and priest, John O’Donohue, describes it well in his book, Anam Cara (Soul Friend):
“Solitude is one of the most precious things in the human spirit. It is different from loneliness. When you are lonely, you become acutely conscious of your own separation. Solitude can be a homecoming to your own deepest belonging… We cannot continue to seek outside ourselves for things we need from within. The blessings for which we hunger are not to be found in other places or people. These gifts can only be given to you by yourself. They are at home at the hearth of your soul.”
Now is a good time to relax into solitude, to go slowly and take some time for reflection. It’s a very rare thing in our modern go-go-go world to have this universal pause. Think about it. Almost everybody the world over is in the same situation. It’s a great leveler, an equalizer, a common set of challenges completely opposite of what usually faces us. What a bewildering, amazing, challenging, strange and bewitching time we find ourselves in. And yet, through this time of anxiety and chaos we can discover a deeper expression of kindness, care, compassion and love.
So if you’re feeling lonely, remember, we’re all alone in this together. Nobody gets a pass. It’s a good reminder of our mortality. Nobody gets a pass. The more familiar and comfortable we can become with this reality, the better able we will be to maintain equanimity in the current situation, and the more compassion we will have for those facing their mortality in the current moment.
Part of our mission here at CCALS has always been to bring calm guidance and awareness into a bleak situation, to open up possibilities and potentialities, and to support the living of life as it is, as fully as possible, and when invited, explore end of life. We’re holding tight to those principles during the current crisis, recognizing that it is not so much the ending of a road, but the beginning of a new one. May you be safe and well-supported as we wander through this otherworldly, live episode of The Twilight Zone.
Blessings and love to all,
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.