I was at a fundraiser recently when I felt a gentle tap on my shoulder. I turned to find two tall young men standing there, one about six-foot-five and the other only slightly shorter. When they told me who they were, I was taken aback. I met them more than ten years prior, after their father had been diagnosed with ALS and didn’t know when or how to tell his boys about it. They were so young and innocent. Now here they were, grown up, one of them a college baseball pitcher, the other working in his chosen field, thankful for what CCALS had done for their family. I cannot imagine how proud their dad would be of them, were he alive to see what they had become.
What we have become…my, my. I ponder this myself, having reached the age this month of what many would consider a true elder, a man of 70. I can still see and feel the boy I once was—like those young men at the fundraiser—who would have never imagined what would turn out to be his calling when he grew up. He would never have guessed that an offer to become the driver of his boss at the catering company where he worked would have turned into an international organization devoted to caring for individuals and families living with ALS. If I could go back in time and tell that boy what was to be, I think he would have looked at me and said, “What’s ALS?”
Good question, Ronnie! What the heck is ALS? In the 84 years that have passed since Lou Gehrig was diagnosed with the disease that would take his name, we still don’t really know what it is—but we’re getting closer. We still haven’t got a clue about the why. The why. It can be mind numbing and heartbreaking. Who gets tapped on the shoulder by the uninvited guest is a profound mystery. So many absolutely fabulous people stricken out of the blue. By what? And for what reason? From my perspective, as the years have gone by, I’ve come to believe there is no reason, it’s just life.
So what we do at CCALS is wade into this unsolvable mystery of a disease that has a name but very little else. Research continues at a furious pace. More breakthroughs appear to be on the not too distant horizon, and we put all of our hopes and prayers into slowing it further, and eventually finding a cure. Until that day comes, though, somebody has to wade into the unsolvable mystery that is the here and now of that fateful day when a person leaves the neurologist’s office with the shocking and traumatic diagnosis—it’s ALS—and what do you do now? My hope is that you find us. Without delay you turn toward someone who will walk along beside you without hesitation, someone who cares in a gentle and stealthy way, in the best way that you don’t even feel like your being cared for! You’re hanging out with a new friend who has some helpful information and a medicine bag of useful tools, and a bit of useful wisdom. Good friend to have in a pinch.
That’s what I’ve tried to do in the 26 years since I became Gordon Heald’s driver, and then moved in as his full-time caregiver. That’s what I learned to do the first time I assisted Gordon up the stairs to go to the bathroom during a party at his home. You walk along with your friend. You don’t pull him along or push him this way or that. You get close and tune in. You listen with every fiber of your being. You listen without an agenda, without a selfish need to have the answer or provide the perfect fix.
Helping is one thing but being truly compassionate is quite another. Helping implies they need something that only I can provide. Compassion listens carefully, patiently letting the tale unfold, taking in the intangibles—body language, setting—letting the message reach soul level where intuition resides, noticing if there is a hunch, and sometime later, if time proves the hunch to be true, sharing it with your friend. Compassion is wondering what will truly serve. So often, the most useful caring is to simply bear witness and hold space. That shouldn’t be so hard to do, but for many, it is.
I call this the art of showing up. What we choose to say, how and when we say it, I call the art of language. This is what my 70 years has taught me about care…it is not a science. It is an art. Doing it well requires more than anything a great depth of curiosity. Preparing to care is a deep and continual inquiry. If we cannot face our own wounds, our pain, our mortality—those experiences we avoid from our past, then it will be very difficult for us to show up with an open heart and no agenda for others. To be a healer we’ve got to heal.
These past 26 years, as you can see in the graphic, have been a continual path of change, growth and finding new ways to bring improved programs to the families we serve. It’s been a commitment to learning, an eye towards getting better and better at what we do. I continue to be incredibly grateful to Gordon and Betsy Heald for being the catalyst of all that we do, the unfolding of what has come to be my life’s purpose. I am deeply grateful for the profound impact CCALS has had on the thousands and thousands of individuals and families we have served. Thank you, always, Gordon and Betsy. You live close to my heart and will never be forgotten.
I hope I can continue to be a calm and healing presence in the lives of those that I serve. To be of service is the greatest blessing one can receive. All of you, my friends, my families, my staff, my board, my dog Maddie—you are my teachers and give meaning to my life. I love you and bow to you.
Compassionate Care ALS provides the best in service and equipment, delivered with an understanding of people and relationships more than any diagnosis, progression, or fear of the future. We are dedicated to showing up on all levels; physical, emotional and spiritual. And we do so without passing along the material costs of what we are supplying. I am often asked, “How do you do it, Ron?”
My first thought is to answer why we do it. That comes down to decades of experience recognizing how traumatic an ALS diagnosis can be, and how a sense of confusion and chaos can prolong and intensify the trauma—unless somebody shows up with an open heart. We arrive on the scene with a great deal to offer and no red tape. If we have what you need, we get it to you without delay. The arrival of something simple like a transfer belt or a comfortable neck brace the day after we came for a visit can bring a deep sense of relief.
So that’s part of the why, and there’s a whole lot more. The how-do-you-do-it part comes down to the incredible “work behind the work”. Some of it is the several big events we sponsor and organize with our incredible fundraising team as well as our families.
Since the beginning of CCALS, our families have always shown up for us, paying forward the support they receive. There have been parties and concerts and bowling tournaments and golf scrambles, runs and raffles and bike rides and motorcycle tours. I look back on everything that has been created and it warms my heart. 2023 is a huge year for family events supporting CCALS. You can read about many of them in this newsletter.
We have never been busier, and I say this every year.
Is it because there are more ALS cases? Maybe. Or is it because our reputation is growing? People are becoming more aware of how we show up in a way that no one else does. I have to think that’s a big part of it. And so I write to you with huge gratitude for all that you do to keep us rolling. I am so blessed by our extraordinary team. We are all in this together, wherever you may find yourself on the journey of ALS. We are family. We will always care.
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.
A few weeks ago many of our staff and volunteers participated in a weekend program from the Upaya Zen Center called “G.R.A.C.E.: Training in Cultivating Compassion-based Interactions.” A great fit for a compassion-based organization such as ours, and a program I have personally participated in on several occasions.
The first letter of G.R.A.C.E. stands for “grounding.” Before entering an interaction, feel your feet on the earth, remember who you are and what is important to you. As I get grounded now in our community, I feel the deep commitment our staff has to caring for our families living with ALS. I also feel the ground of ALS almost like a tremor, unsettled and shifting and unpredictable. I feel and recognize how challenging it can be for all of us, especially those living with the disease and their closest caregivers.
Grounding into this reality I recognize how important it is to bring compassionate service into the circumstance, whatever it may be. From here, in the G.R.A.C.E. model, we move into “R,” that is to “recall your intention.” Why are we here? What is it that we want to bring, offer or contribute? And how do we want to do so?
One of my big intentions with CCALS is to simply show up. Continue to bring our unique relational model of care to this relentless disease, while keeping an open mind and heart, and hold space for not-knowing, not fixing, simply being. In order to continue showing up, we have to continue hosting events like our Gala, happening June 3. Without events like our Gala—and the many other smaller yet hugely important fundraisers that happen throughout the year—we would be unable to “recall the intention” to keep showing up for those in need.
The “A” of G.R.A.C.E. is “attunement,” first to self, then to others. This is that embodied wisdom that is so honest, if only we take a moment to quiet and become curious. What am I feeling? Where is it in my body? What is the person I wish to serve feeling? Can I feel with them with balanced empathy?
As I attune to our work and our community, what I feel is something akin to a strong tide or a stream with a steady current. This flow comes from the mystery of life and death, the unanswerable question of why some people get a terminal disease while others do not. When I soften and tune in to this reality, my heart opens to the flow, and to the calling that CCALS has…to be there as best we can for those who find themselves one day leaving a neurologist’s office with a diagnosis they did not want to receive. Where do you go with that trauma?
We are here to provide calm guidance and awareness when that news comes your way. We are here to explore possibilities with you in the spirit of mutuality and encouragement. The river of need keeps flowing, and that is why we’re opening an office in Colorado, expanding our presence in Pennsylvania, and hiring additional care liaisons to provide online connections throughout the country. We’re tuned in to the need, and acutely aware of what is often missing for those faced with a terminal illness like ALS.
The next letter of G.R.A.C.E. is “C,” i.e. “consider.” Consider what will truly serve. This step involves a pause, a creating of space and inviting possibilities that didn’t at first come to mind. What that is will vary, case by case, moment by moment, and often requires an act of faith. I don’t know what is needed right now, but I will pause, open my heart, really tune in and see what emerges.
What feels like it will serve our community is our Cultivating Compassion Education Series, including our Speaker Series. These gatherings and programs provide places of belonging, circles held in the council way in which all voices count, and listening is more important than analyzing and fixing. If you have not participated in one of our gatherings, or heard one of our speakers, I highly recommend that you do.
The final letter of G.R.A.C.E. is “E,” standing for “engage and end.” After considering what will serve, to engage in compassion is to take action. The essence of compassion is the sincere desire to reduce suffering. There is a bit of a paradox in this, however, because engaging may appear to be active, and yet at other times it appears passive and inactive. When we attune and consider what will truly serve, we may realize that bearing witness is the most compassionate thing we can do. By simply being with another, fully present, clear and attuned with an open heart can be incredibly healing.
Related to ending, it’s important to recognize the time to end, when enough is enough. I call this “stealth showing up,” a way of sensing what is needed, giving just enough, and quietly moving on when our work is done. Ending is equally sacred as anything else that happens in the encounter. Let go and move on, because there’s somebody down the line who needs your full and clear attention.
I want to acknowledge our staff, who I see giving of themselves in difficult circumstances every day. They do this knowing that those in their care are on the path of ALS, and that they can’t do anything about that, except to bring kindness, calm and awareness, and walk alongside where others, at times, fear to go. Let us continue walking together along this road of life that, for all of us, one day transitions, in some mysterious way, into something else.
Over the past two plus decades, CCALS has done a lot of little things and big things in ways that truly serve the ALS community. We have done these things so well that we see the need to expand our physical presence in parts of the country where we have a connection and where it makes sense to grow. We are working hard to make sure we can do what is being asked of us.
I’ve said for a long time—and believe strongly—that what we provide to those living with ALS is unique in the world of healthcare. Our relational model is based first and foremost on the skills of listening, noticing and showing up with calm clarity. It provides something for our families they don’t often receive anywhere else. The fact that our approach works is reflected by the increasing number of families we serve.
CCALS is unique because our work can be healing. We don’t approach ALS as this relentless, merciless decline, but more like a wave, with lots of ups and downs, incredible fluidity and mystery, and many opportunities for healing, growth and joy along the way. Our team conveys this attitude beautifully with incredible presence and dexterity in the work they do every day. Every family is different, and sometimes there is significant chaos and suffering. Sometimes our best efforts are not received, and that can be frustrating. That’s why I feel it is vitally important to take good care of our staff, so they have the resiliency necessary to continue showing up for families facing such extraordinary circumstances, punctuated with a terminal illness.
A few weeks ago, all of the staff was able to take an in-person weekend together at our Retreat Center (with COVID-19 protocols in place). It was a time of community, sharing meals and stories, exploring our inner lives with open hearts, listening and appreciating who we are and what we do. I feel this effort is unique in the world of healthcare. So often, healthcare professionals at all levels are harried, stressed, and pushed to the edge of breakdown. No one is pausing to hear them, care for them or give them tools to avoid empathic distress and burnout. At CCALS we are taking the time to do this, and I believe it is making the service we provide even stronger.
Most of you who are reading this know what the road of ALS looks like. You understand that having compassionate and knowledgeable companions along the way can make a huge difference. Word of what we do and how we do it has spread, and we are answering the call. Thank you for walking along with us and supporting us every step of the way. I bow to you all.
I took Madison out for her morning walk the other day and felt the crispness of spring giving way to the warmth of summer. The turning of the seasons made me think about the circle of life, the springtime of youth giving way to the summer of maturity, flowing into the responsibilities of the fall season and circling around to the elder years of witnessing and blessing—the winter of our lives.
For my friends living with ALS, the progression of life has been accelerated. The years associated with the seasons and phases become compressed. Therein lies the mystery of our individual dances here on this earth.
My friends living with ALS sign up for various trials, filled with optimism that this one is “the one” and the nightmare will be over. I’ve been watching this drama unfold for nearly 25 years now, and keep that hope alive as well. There is progress, no doubt, and the search for a cure must continue. And still, the needs of those people whose journey around the hoop of life just got sped way up must still be met in the here and now.
It brings me solace that we restarted our Cultivating Compassion Education Series in March of this year. These weekly gatherings take place under the titles Caregiver to Caregiver, ALS Family and Friends, Men of ALS, Women of ALS and Beyond ALS. These events—online during the pandemic—are one of the ways CCALS serves our community in the here and now, on a heart and soul basis, with deep listening at the core.
I very specifically do not call these gatherings “support groups” because, in my experience, support groups very quickly devolve into advice-giving and a loss of safety and equanimity. There’s a lot of interrupting, among the worst of which is the handing of a tissue to somebody who is crying. What happens when that tissue shows up? The person sits up, wipes away their tears, blows their nose and the emotion is pushed away. No time or space for feelings to naturally emerge, be witnessed and become part of healing. At our gatherings, we want to just let it be. Let the person have their feelings. Let it percolate within you. In that way, another person’s emotions freely expressed can be a lens into our own heart, to the wounds and losses of our own that still need tending.
I love it when caregivers and those living with ALS come together at our gatherings. It provides another chance to view our circumstance through someone else’s lens. Speaking or hearing truths between those being tended to and those doing the tending can be hard to come by. Those truths, spoken by another at one of our gatherings can be incredibly illuminating. Then both carers and those being cared for can leave the gathering a little more open hearted and understanding.
I spoke with a woman the other day who attended our Women of ALS gathering. She said it was the best thing she’d done since her husband’s diagnosis.
“What was it about the gathering that had so much meaning for you?” I asked.
“One of the women living with ALS had such a wise perspective about her situation. I had never thought of it in that way. It helped me understand what my husband is going through in a whole new way.”
The other thing we’ve been doing more of—and I think it’s really important—is providing more council time and deep listening to our staff. I call it caring for the carers. It is something sorely lacking in our healthcare system. How can people be expected to show up fully for others when no one is showing up for them?
Someone said to me the other day, “Ron, what you do is not normal.” What we do—working around death and dying every single day—is not normal. It’s a lot to take on for our staff. One of our senior members put it well the other day when he said, “It’s relentless.” Is it ever. All the more so for those families navigating the twists and turns of ALS every day.
We all need tending. I can’t emphasize it enough. We do not have the resources on our own to handle the relentless demands of ALS. We need each other. We need counselors and therapists and faith leaders. We need to gather together in council and simply be together, open our hearts, bear witness, hold space and listen. We need to relieve ourselves of the burden of having to figure it all out, come up with the perfect answer or play the savior.
Come to our gatherings, friends. Relax and be together in our shared humanity. Take advantage of the refuge we are offering. You may find it feels a little bit like coming home.
The days and times of our lives become vividly more precious when we are confronted with a fatal illness. Our ALS families have taught me that. Everyone reacts to the trauma of an ALS diagnosis in different ways, but unconsciously or consciously we understand one thing clearly: time is precious.
Knowing this encourages us to make clear choices about how we spend our time, and keeps us focused on what is fruitful and has meaning. For my friends with ALS, this often means making time for long postponed activities or relationships that may need tending or cultivating. The COVID-19 pandemic has added another layer of understanding the importance of the moment and making time count.
Dozens of families have called me this summer disappointed that they have had to cancel their fundraisers in support of our work, everything from golf tournaments to beer tasting festivals. Even our largest annual fundraiser, the Falmouth Road Race, had to go virtual resulting in greatly reduced participation and funds raised for CCALS. The pandemic also meant cancelling our biennial Gala. We are so lucky that our generous donors recognized our situation and stepped up with the funding to make it possible to continue our work with the more than 660 families who rely on our services.
The pandemic changed everyone’s lives, and very quickly. No dining out. No travel. No sporting events or theater. It limited the activities that make up the fabric of life. For CCALS, the shutdown meant no in-home visits. We usually visit our families where they are most comfortable, we get to know them in their own homes. Our learning curve had to be swift as we transitioned to virtual overnight. I’m proud of our staff for adapting, getting savvy with the technology, and putting into place our services through whatever means were available to us. We are grateful to have been able to start home visits again, under strict safety protocols.
I encourage everyone to greet the challenge of these pandemic times. Yes, we are unable to engage in most of the social activities we have relied on for connection. I find if you look deeply satisfaction comes from our ability to achieve inner peace, no matter what is happening around us. This is why I am always an advocate of contemplative practice and self-inquiry into who we are fundamentally. One of the most important matters is knowing how to live our lives aware that the time we have is finite.
I invite you to truly self-reflect during these times, my friends. Find your deep heart and soul. Reach down inside and touch the depth of your being. Learn what is that makes you achieve inner peace and brings you joy in the most challenging of times.
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.