“Your mother must be proud.” “My mother is dead,” I respond. I used to respond tentatively, voice lowered to reduce their embarrassment of asking a totally legitimate question that quickly blossomed into awkwardness without them knowing what they were walking into. “I’m sorry.” Now what do you think happens next? My mother has been dead […]read more...
Our most important life decisions aren’t about what we do. They are about who we focus our attention, efforts, time, and care upon — our audiences.
The following is about as close to a social law that exists — we eventually conform to and merge with those we are near, day in and day out. Yes, it’s so difficult to notice the impact of our audiences upon us because the values and beliefs and ways of talking and being with those nearest to us can’t help but become our world and define our perspective.
For caregivers, our audiences — your mother, father, child, spouse, friend — don’t need to persuade us when they seep into us. They don’t need to cajole us when they surround us. Their worries become ours. Our worries become their worries. Then, without notice, our everyday and ongoing interactions with them shape the way we believe the world works and, perhaps most importantly, the ways in which we believe the world should work.
That’s what makes us so unique — and misunderstood. Others seek audiences that promote advancement and opportunity. Moving up the corporate ladder or impressing our friends at a party are legitimate reasons for attachment to particular people and audiences. Doors open. Opportunities are made. Contacts are established. These are all valid and important reasons for sociality.
But the caregiving experience is so often misunderstood because most others can’t fathom why we would spend our time with those who promise us nothing other than who they are . . .
No, really. Why would you do that?
Can’t you find someone else to be there?
What do you get out of it?
Doesn’t it depress you to spend your time with someone who is . . .
These aren’t mean questions — they are simply the questions asked by those who can’t understand that there is value in our care relationships with those stripped of title and power and prestige by their illnesses and vulnerabilities. It is a radical statement to engage in a relationship based not on what we might gain, but on what it says about the person we care for and our values. A relationship beyond advantage. Beyond strategy. Beyond expediency. Not a relationship based on what it might lead to or what it might represent. A relationship based on what exists – now.
Our care associations say something more eloquent about what we believe than we could ever put into words. Our care means we are willing to engage in relationships that don’t necessarily guarantee us comfort. Or assuredness of appreciation. Or deep understanding. Or peace of mind. Or reciprocity. And yet, we still care.
These days, I no longer listen much to what people tell me about who they know or whom they associate with that they believe will impress me. I look for character where few others pay much attention. I don’t look at people as much as I look to whom they keep company with. Show me someone who cares for another without notice or acknowledgment or prestige, and I know this is someone I want to keep company with because we know something most others haven’t yet learned. The most important relationships in life don’t necessarily lead to anything — they call us to be something that we didn’t know was possible.
It’s not just what we stand for — it’s who we stand near that matters most.
“Your mother must be proud.”
“My mother is dead,” I respond. I used to respond tentatively, voice lowered to reduce their embarrassment of asking a totally legitimate question that quickly blossomed into awkwardness without them knowing what they were walking into.
Now what do you think happens next? My mother has been dead for some time now but when I was younger, the next question was almost always the same.
“What did she die of?,” they’d sincerely ask.
My response was so well practiced and was so easy to recite because that’s where all conversations about my mother began and ended: “Brain cancer.”
The concern with how someone died—or the death diagnosis—isn’t just about what happens in conversation with strangers. When my son was younger, he would see pictures of my mother around the house, and innocently ask, “Who is that?”
“That’s my mother. Your grandmother.”
“Where is she?”
“How did she die?”
“She died of brain cancer.”
He then continued his line of questioning, got down on the floor and reenacted what he believed must have happened. “Did she die like this?”—picture him lying on the floor arms spread out. “Were her eyes open or closed?,” he genuinely asked without knowing he was walking into territory everyone thinks about but no one dares enter.
Since my mother’s death, I’ve found myself stuck in a modern paradox I didn’t anticipate: How can I explain my mother’s life when that means explaining who she was and how she impacted me—not how she died?
. . .
I have to confess that I broke a sacred rule of the digital age. I threw away all of the images of my mother when she was dying. Don’t get me wrong. I had the privilege of spending the summer with my mother and father at home—as she bravely endured radiation treatment to no avail. I didn’t destroy the images because I was embarrassed. No. My pictures of that summer only showed what she was losing—her ability to walk. Her capacity to move. Her memory. Personality. Voice. Sight. Before I got on the plane saying my final goodbye to mom—I decided to destroy my images of her that summer because I was simply afraid that the images of her dying would get stuck in my mind and prevent me from remembering anything else about her.
I was wrong.
It’s not simply our images that shape how we remember those we love, but it’s also the way we allow illness diagnoses to be the beginning and ending of how we talk about and understand our loved ones.
“What did your mom die of?”
“What type of cancer did your mother have?”
“What was the exact type of brain cancer—was it glioblastoma?
“How old was she when she was diagnosed?”
“What stage of cancer did she have when she was diagnosed?”
Medical diagnoses are incredible tools for pinpointing, with detail and precision, what is wrong and where it is occurring in our bodies so we can efficiently marshal technological resources and experts to respond. But what I’ve learned over the years is that the power of medical diagnoses also shapes our individual and collective memories long after death.
In the 21st century, all of us will be diagnosed with something. Medical diagnoses have become the universal rite of passage as the proliferation of conditions and diseases and cancers advertise our incredible ability to map the seemingly unending terrain of the human body. But diagnoses don’t only shape our attention and responses before death. Their power lives long after death in ways that make it more difficult for us to create understandings of our loved ones beyond medicalized terms. Beyond cells. Beyond body parts. Beyond pathology. Beyond cause(s). Beyond diagnosis.
. . .
Untangling my own memories of my mother from her brain cancer diagnosis has been a work in progress. I’ve spent years trying to rethink our culture’s preoccupation with causes of death. Talking about diagnosed body parts and pathologies can connect us to one another as we find commonality through a shared enemy. But this is just one way of talking about our loved ones—not our only way.
I no longer speak of the causes of death. I speak of the causes of life. Strange, I know. Trust me, I get lots of weird looks from well-intentioned people who want to know why my mother died so young. In other words, they want to know what she was diagnosed with that led to her death.
My way of re-claiming my mother from medical terminology means flipping the script of questions that we’ve all willingly recycled because it’s become our default way of talking about death. It looks simple enough, but it’s really hard—or let’s call it awkward at first—to talk about causes of life rather than death. Most of the time, I find myself responding to questions that no one ever asks me, so I just interject them.
So when I’m asked, “What type of cancer did your mother have?,” I give them the obligatory response of brain cancer. Then, I then keep the conversation going by responding to one of the following questions that, sadly, no one ever asks me . . .
What moved my mother?
Who moved her?
What motivated her?
What connected her?
What inspired her?
Who did she inspire?
Connecting my mother to what connected her to life—family and friends and religion and writing—helped me get unstuck from the trap of medicalized language that locates my mom as if she were reducible to her diagnosis. Trust me, it’s led to some awkward interactions but when I leave the interaction, I’m more fulfilled. I feel more whole.
I even flip the script with my children (this process of learning how to talk about my mother has taken so long that I now have two children). I will show them a picture of my mother and begin explaining the wholeness of their grandmother that can’t be understood by parts—but by her connections to others . . .
“Who is that?”, I ask them both.
“That’s your mommy,” they respond.
“Yes, she’s also your grandmother. Do you know what she lived for?,” I ask.
“No?”, they respond in unison.
“Family. Did I tell you the story when my own siblings and my mother . . .”
My mother died of brain cancer. This is important to know. But my mom lived for so much more. This is important to know and remember too. Death diagnoses, like brain cancer, are essential to advancing medical knowledge. But, after death, medical terminology isn’t enough because it’s designed for technicians—not sons, daughters, mothers, fathers, and friends.
Explaining how and why my mother lived is what I now lean on to explain my mom to the world. She was my storyteller. Now, I know I’m continuing her story because her story can’t be contained by diagnosis alone. It’s not only a story of cells and body parts. It’s a story about mom and me and so much more than can ever be seen under a microscope.
We are always recovering from something—a long weekend, too little sleep, too much fun, too much eating, a bad week at work, a disappointing relationship, an error on our part, an error on someone else’s part, unmet expectations, and so on. Much of our belief in recovery is a desire to return to a state of so-called normalcy. A hope that we can and will return to who we once were and to remind ourselves that the experience that changed us will define us no longer.
For caregivers, recovery means something different. Caregivers don’t seek refuge in recovery because we change in such profound ways that we often don’t want to return to our previous selves. Here are just a few of the ways in which caregiving irrevocably changes us and the way we respond to others:
- Life is interruptible. While others get caught in the rut of boredom and sameness, we can’t help but be reminded that life is constantly interrupted and interruptible. Always changing. Unpredictable. Others expect to awaken the next morning to life as it was yesterday. We go to sleep at night with no guarantees that tomorrow will be anything like today. Others talk with confidence about their future—assuredly projecting themselves days, weeks, months, and years into the future. Caregivers typically don’t. We are humbled by the present, and realize that what we think will happen is no guarantee of what will unfold. We know our only guarantee is the present.
- Control is a myth. Other people believe that their actions alone can effect change. On the other hand, our loved one’s bodies remind us that control is something that is fleeting. We quickly realize that life isn’t ordered the way we thought. Our thoughts and beliefs become chastened by our loved one’s changing physical circumstances, and the world around us seems to push us forward and around, like the experience of being thrown from a raft. Alone, and beyond the raft, the river quickly teaches us that our efforts to protest are futile—there are forces greater than our desires and efforts. Life is fragile. Our bodies are fragile. Our experiences remind us that we live in a world that is beyond our control, especially when it comes to those we love most.
- Intolerance for triviality. Healthy bodies love consuming the latest celebrity gossip and news. Their fates seemingly rise and fall with their favorite sports’ teams. Over time, caregivers’ tolerance for triviality dissipates. Spending time with people who suffer, or who are struggling, means we can’t help but find it difficult to digest the fixations of popular culture. Meaningless endeavors become a threat to our emerging values. Chatter about insignificant topics or faraway scandals become exhausting and overwhelming when we want someone to notice our own lives. Our challenges are not abstract—they are struggles of life and death. Unlike others, we don’t allow everything and everyone into our lives. We become discerning gatekeepers—only allowing people and information that mean something to us and our loved ones. It’s all personal for us. And we think that’s a good thing.
- Hellos matter as much as goodbyes. Almost everyone believes in goodbyes. Caregivers, however, pay special attention to hellos. Caregivers realize that the hello is just as remarkable as the goodbye. Someone came to see me? Someone interrupted their routine to visit? Someone prioritized me and chose to make it possible for us to spend time together? Time that could have been spent doing something else? Caregivers hold extra tight to visitors in the midst of the hello greeting because we more fully appreciate the miracle of shared space than those who take for granted the presence of others. For caregivers, the hello is the most precious and sacred of acts.
- During—not before of after. Before and after photographs are so enticing because two different images of the same person juxtaposed next to one another seemingly reveal everything we need to know about how someone has changed. The contrasting images–changes in weight (loss), hair cut, makeup, clothing–are irrefutable visual evidence that a transformation has happened. For caregivers, change isn’t about how we look. It’s relational. Value based. Internal. Our new selves do not emerge with any grand proclamations because we’ve been changed by what happens when we were with someone. Who we’ve become isn’t a result of anything that happened before or after but a result of what transpired when we allowed ourselves to be close enough to be changed by the person we cared for.
Instead of looking in the mirror to notice how we’ve changed, we should look to those with whom we now surround ourselves with. Look to the causes and organizations we identify with. Look to what we value and what we exclude from our life.
Notice that we aren’t moved by what others are invested in—we’ve been marked by the experience of care that has no expiration date. We don’t recover from being a caregiver. Care changes us. We take our experiences and our care with us and, in the process, we are remaking the world around us.
At some point, everyone utters the phrase—I’m not where I thought I’d be—privately to themselves. Some of us, however, are more vulnerable than others, especially when our expectations are frustrated by challenges in life that we never thought, expected, or planned.
Unfortunately, our questions can often be mistaken for accusations because we repeat them to ourselves so many times that we can’t help but think they are true. So the next time you get momentarily stuck in the quicksand of—I’m not where I thought I’d be—you might want to keep in mind the following:
- Where we are now is never where we thought we’d be—ever! When things are going well, we don’t reflect. We keep moving, and going, and pushing. Reflection and contemplation happen when our lives become interrupted, when what we thought was going to occur—doesn’t, or when what we never planned to happen—happens.
- The past is never a good predictor of our present. The trajectory of our expectations is always the same—they are straight and unchanging lines defined by their end points, not by process. Our dreams don’t account for the need to turn, swerve, speed up, slow down, pause, turn around, let alone change directions. But dreams of the future are powerful because they are seemingly so clearly defined, real in their gravitational pull toward some desired destination. Unfortunately, we can easily become lost and disoriented when what we thought was going to happen doesn’t correspond or make sense given our everyday challenges.
- For all of us whose lives have at some point been interrupted, there is one undeniable fact: we aren’t who we used to be. Our past dreams often delude us into thinking they are timeless and timely when they are not. Our dreams almost never account for the fragility of life, love, care, illness, disappointment, and rejection. Too often, our dreams can’t keep up with who we’ve become. Dreams are like milk, they go sour and make us sick when they are past their due date, though we rarely throw out our dreams when they expire amidst new realities, changes, opportunities, and insights.
- Dreams can be incredibly deceptive because they often omit the messiness and tensions and responsibilities that characterize our everyday relationships. Most people’s dreams aren’t about becoming closer to another human being when it’s not easy. Most people don’t dream of loving someone when it’s not easy. Who dreams of what life will be like when we love someone who becomes ill? Who dreams of managing the challenges of work and life and children? Who dreams of being depressed? Who dreams of struggle? Who dreams of bodily interruptions? But we’re not most people anymore, are we?
When you torment yourself with feelings of failure and disappointment because you’re not where you thought you’d be, begin to edit your past expectations. Change the script of your dreams made years ago in a galaxy unconnected from the world you inhabit now. Start with where you are, here and now. Use your current situation as a starting point, not as an ending point. You are changing, so should your dreams. The next time you question yourself because you’re not where you thought you’d be, remind yourself that the where may not be nearly as important as the person you are becoming.
Each year, I have the rare privilege of having a front row seat to one of the few respected rituals in contemporary life: college graduation. It’s beyond unfortunate, however, that we don’t ritualize life’s other markers beyond graduation.
In honor of life’s often overlooked but life-altering transitions, here’s what a ceremony for caregivers might look like . . .
What Are We Honoring?
Our ceremony will honor our willingness to respond to life roles that we were drafted into—unexpectedly. That’s right, the roles that called us to care that didn’t occur within our expected time frames and didn’t conform to our plans. These care roles weren’t the roles that we spent our lives sculpting our resumes to attain. Explaining care doesn’t go over well at parties—trust me, I’ve tried—because people don’t know how to respond. Care isn’t a position. It’s not a company. There are no promotions. It’s not a bucket list item. These life roles came at us, whether we were ready or not.
Honoring care authentically means none of us would individually walk across a stage for a handshake and picture. For our ceremony, that would be deceptive and impossible—we’d never fit everyone in the camera frame. Invisible life transitions like caregiving are always social—our responsibilities and connections highlight how we are rooted in and grounded with others. Our ceremony will call attention to the fact that our lives aren’t defined by other people’s beliefs about ambition. No, our ambition isn’t neatly packaged. It’s private and public, familial and stigmatizing, life-altering and life-affirming. This ceremony will honor our willingness to walk not simply toward our goals, but also our willingness to open doors into people’s lives when few others would.
Who Would Speak?
Commencement speakers are the celebrities of college graduations. Carefully chosen and vetted, a person speaks for the graduating class. An inspiring figure. A public celebrity we’ve seen on television. A politician or sports figure that comes from afar to tell us about the art of living, armed with sweeping answers and clichés to rid of us of our uncertainty and tell us there is nothing really to fear because the world beyond is for the taking.
For our ceremony, we’d do things much differently. Importing a national figure to talk about our everyday, lived experiences wouldn’t make sense to us. When someone tells us they have the “answers”, we tune out. We don’t have the energy or patience for such speeches. We’re not even looking for answers and we’re not keen on listening to others who charismatically clean up and organize our lives in fifteen minutes or less before heading out of town. We’re used to messy—clean clichés wouldn’t work.
Instead, perhaps all of us in attendance would write out a line or two about our experiences and challenges, or draw a picture or create a tune, integrating our creations into a babble of voices and representations. It would be noisy no doubt, but whatever is created would be connected to others’ creations. We would be both creators and audience—our words and creations and images and sounds and presence would be our rousing anthem. Not a Katy Perry kind of anthem though. Unlike college graduates, we’re not waiting to be inspired. We know too well the expiration date of inspiration. Our experiences tell us that inspiration without love and care and a commitment to others rings hollow. I’m talking about an anthem of our own making that allows us to pause time long enough to mark our care transitions—however confusing—while surrounded by others.
What Would Be Said?
This is so very complicated because we know graduation speeches always include a brief shout out to the past and an unending preoccupation with what is coming, where people are going, and who they hope to become.
Our ceremony couldn’t help but be drastically different. We don’t think like most college graduates—we don’t see ourselves as unbounded, floating in the wind of life. Our roles connect us to those we love and care for. Sometimes we feel our connections constrain us but we also know they are the life fulfilling necessities we wouldn’t want to live without. We aren’t free agents. We are social agents. That’s what will be said. And shared. And felt. And celebrated.
Most people dream of where they will visit and what sights they might see and experience after graduation. Grief. Loss. Anger. Loneliness. Silence. These experiences are typically not invited to graduation speeches. But these are the places we have visited and these are the places that have visited us. They have compelled us to expose parts of ourselves we didn’t want others to notice. They’ve made us vulnerable, inspiring us to endless self-questioning and doubt. They aren’t glamorous destinations but they are necessary parts of our journey that shouldn’t be omitted because leaving them out would mean erasing vital parts of our experiences. Let others edit their words of wisdom to only include inauthentic half-truths. Not for our ceremony though.
What About Moving Our Tassel?
Today, during our celebration, we don’t need to mark our care transition with the ritual placement of our tassels because we are already marked. We don’t have to tell people we are important by reminding them of the awesomeness of our yet-to-be-lived future. We don’t have to strategically self-present like college graduates and tell the world what we think they want to hear. Today, we are as we are. We are what it looks like in the midst of disorientation and resilience. We are college students’ future selves. The only difference is that for the first time, we can see and appreciate who is around us. We are no longer consumed with looking through people to find a glimpse of the future. We can appreciate those around us—that’s right, you—for who we are now. Yes, this is where we need to be, here—complicated. Tangled. Connected. Grounded. Not out there beyond—but right here. Yes, right here. Not valuable for who we are going to be. Valuable for who we are and what we are doing now.
Excuse me, but I think I’m going to stay here a bit longer. Unlike a college graduation, I don’t have a party to attend. Nothing to run to. Not anymore. Do you notice what’s going on? People are still arriving at our ceremony. The seats around us are constantly being filled because there are no onlookers—no spectators or visitors—just participants engaged in this thing called living. Stay with me here a bit longer, would you? I want to close my eyes and feel the presence of acknowledgment and shared struggle. Grab a seat, there’s one right next to me.
When most people think of sickness, they think of a person who is sick or has an illness, as if the sickness is something that one individual possesses. Caregivers can’t help but understand sickness differently than most others. While most people think sickness is only about what happens to one person’s body, our repeated exposure to the illness experience changes us as we are constantly reminded that . . .
We aren’t always in control. Only when we spend time with and near those who are sick, do we know that the body’s voice—aches, pains, discomfort, suffering—can’t be ignored. Sickness reminds us that it works on its own schedule—not ours. Our calendars are full of appointments and meetings and to-do lists that we set up when we could plan out our futures based on availability. But our loved one’s illness doesn’t care what we had planned for tomorrow. It can’t be postponed until we can mesh our calendars.
Whether brief or permanent, near-illness experiences require us to look in the mirror and see ourselves differently than we might have ever looked at our ourselves before. Spending time near sickness means never being able to forget that there are forces at play beyond our will and desires. Care, up close, prevents us from believing that we can—and should—do whatever we want, whenever we want.
We are constantly humbled because we know that sickness eventually finds us all—regardless of our size, strength, income, or background. Humility is not a space most others inhabit on a daily basis but for those of us who spend time near illness, we can’t help but notice what most others overlook. Near illness, life appears fragile. We see so clearly what can go wrong and find it hard to let go of this truth. Appointments can be missed. Dreams can be interrupted. Schedules turned upside down. Habits broken.
When near the sights and sounds of our loved one’s discomfort, we are affected too—often finding ourselves in a state of perpetual unease.
We don’t feel like reading. We don’t feel like watching television. We aren’t comfortable with the lights on. We aren’t satisfied when the lights are off. We don’t feel like talking. We can’t sleep at night. We are tired during the day. In a world that’s always on, being near illness can make us feel off, refocusing our attention to the functioning of the limits of the body in ways that inspire respect, fear, and reverence.
We need others. When we are near healthy bodies, we want an audience to display ourselves, our talents, to remind others—and ourselves—that we are important, worthwhile, funny, and desirable.
When we are near illness, something drastic and disruptive occurs. We don’t want others to remind us that we are worthy, we need others to remind us that we are not alone because the suffering of those we care for has the incredible capacity to exaggerate our isolation.
We are the witnesses that hear and comfort our loved ones when they can’t present themselves in ways that make others feel more comfortable. As witnesses to physical authenticity—the kind of authenticity no one talks about—we need to know we are not alone. We comfort our loved ones with our presence by assuring them that our care exists without conditions. We reassure them that they can close their eyes and know they will wake up with us near. But we need reassurance too because our witnessing means that we are often left unprotected from our own doubts and fears.
Sickness and care are so interwoven that to untangle one from the other would render both meaningless. Sickness without care is unbearable. Care without vulnerability has no purpose. Too often, we think of people as sick or well, caregiver or cared for—exaggerating the differences between our ill loved ones and us. We care for people who are being remade by their illness and in the process, we are changed. Illness can’t be quarantined to bodies alone, it becomes a part of our relationship as care reminds us of what most others too quickly forget: we can’t help but see ourselves in those we care for just as our loved ones can’t help see themselves in us. For those of us who have had near-illness experiences, we know that illness can’t ever be understood by biology alone—it’s also a relational experience that constantly reminds us of truths we can never forget—even if we want to.
Throughout our lives, we are sustained by beliefs that are left unquestioned. They simply are. These taken-for-granted beliefs can’t help but become mistaken for enduring truths that we use to guide our priorities and relationships and choices . . .
Push through, work harder, and do more, because it will lead to something better.
Follow opportunities wherever they may be and whomever they may take you away from.
Make yourself valuable by specializing.
Let passion guide you.
Possibilities are endless.
There is always tomorrow.
Be available to others, all the time.
I can’t now—I have a meeting.
Caring for someone changes us. It isn’t just something we give. It takes something from us too—our taken for granted beliefs. They are stolen from us but no one seems to notice that they are gone. We can’t help but become disoriented as the beliefs that had once guided us now appear jagged and dangerous, requiring us to question and even walk away from what we used to hold to be true . . .
Push through, work harder, and do more, because it will lead to something better—I’m done pushing though today if that means just crossing something off my list. Caring is harder than anything I’ve ever done. Caring more won’t make my loved one better even though I wish it would.
Always follow leads and opportunities—why do leads and opportunities always have to be far away? Why can’t this relationship be my opportunity? And lead to what? I’m satisfied with what’s before me.
Specialize—how is that even possible? My specialty has a name and a face. And he doesn’t only need part of me, he needs all of me.
Let passion guide me—why is passion always about work? Isn’t caring for someone I love a type of passion, even if it doesn’t impress others?
Possibilities are endless—no they’re not. I recognize my limitations and I know the person in front of me isn’t a possibility. She’s real.
There is always tomorrow—my experiences tell me otherwise. Now is what matters most. Now is where I want to be. Today is the only thing I know to be true.
Be available to others, all the time —I can’t anymore. I don’t want to be ‘on’ for everyone anymore because that means I can’t be present for the people who need me the most. The people I need most.
I can’t now, I have a meeting—I’m going to be here for you now. This—you—are important. Nothing else is more important than you.
We change our beliefs when what we hold to be true no longer fits what we are experiencing. The problem is that our care transformation isn’t noticeable. It isn’t like a before and after reality television show where you can easily see the transformation by comparing what we look like now to what we used to look like. There are no big reveal moments when it comes to belief transformations. No, internal makeovers are searing and silent. They reveal themselves slowly, and tentatively, not on stage, but in everyday conversations that are often met with disbelief rather than adoration.
“Are you okay? Seriously, you’re not acting like yourself.”
Care, deep care for another, can’t help but transform us. Care inevitably infiltrates every part of us from our eyesight to our mindset. It sets itself upon us in ways that begins to remake what we once took for granted and believed to be true. We didn’t seek to transform our lives—transformation came to us because we dared to care.
When we are physically healthy, strangers are to be kept at a distance. That’s why we lock our doors and are wary of people we don’t know—“Never, ever open the door to a stranger!” When illness enters our lives and the lives of those we love, however, something strange happens.
The people we know most (or the people we thought we knew) find it difficult to enter our lives . . .
“It’s too hard for me to see him this way. He used to be so lucid. And now, he just sleeps.”
“What would I say? What can I say?”
“I love her so much. I can’t handle it. I can’t see her that way.”
As those we know find it increasingly difficult to visit when the prospect of death is more than an abstraction, strangers willingly walk through our doors. Based on my own experiences as a hospice volunteer and my academic research on the hospice experience, here are 3 reasons why hospice volunteers, people whom you have never met before, can provide care that many others simply can’t:
(1) Acceptance—Hospice volunteers willingly walk into our lives when some friends, acquaintances, and neighbors walk out of it. Why? Hospice volunteers didn’t know our loved ones before they were ill. Their role always begins with the onset of illness. They walk into our homes and our lives and see our loved ones for who they are—not who they used to be. Sometimes, those who know our loved ones best can’t get beyond comparing and contrasting who they were with who they are now. In the process, grief and shattered expectations can prevent them from seeing what is before them. Hospice volunteers openly accept the present. This pure acceptance of what is—rather than a concern over what was, what isn’t, what could have been, what should have been—means they orient themselves to our loved ones in drastically different ways than most others. They bring a radical kind of attention to our lives—attention preoccupied by what is rather than what isn’t.
(2) Guilt and Agenda Free Care—Hospice volunteers don’t bring guilt with them. They don’t know our past. They don’t have broken promises and don’t bring with them past grievances that can sometimes get in the way of the time they spend with you. Sometimes, our closest family and friends disinvite themselves from the illness experience because they believe they’ve let us down. They said they would call over the weekend—but didn’t. Guilt then becomes a barrier between them and us. “It’s too late to call now. I should have called. What would I say now.” Hospice volunteers don’t carry with them the baggage of interpersonal and familial obligation. Their role protects them from having to explain, rationalize or justify. They have no agendas. No desire to persuade you to do or be or say anything other than what you choose. Sometimes, for family and friends, guilt and unresolved issues get in the way of care visits—turning moments of peace into storms of internal doubt, regret, and confusion.
(3) The Freedom to Be— It’s hard for us to separate words from care. If you care, you speak. If someone is in your presence, you must be a good host, and entertain them with words and conversation. For others, the premium on words seems to grow in importance as friends and family take the time, energy, and money to visit. When everyone is preoccupied with avoiding saying the wrong thing or being a good host—authenticity retreats. Awkwardness enters and dominates. Silence becomes a sign of a relationship gone wrong rather than a sign of comfort. Unlike family and friends, hospice volunteers know that what is said isn’t nearly as important as physical presence. Silence is not a sign of a failed connection, but a vital part of the vocabulary of care and comfort and assurance. You and your loved one don’t owe hospice volunteers your words. The permission to remain quiet in another’s company, knowing you are not alone, comforted by the peace of another, unburdened by the need to say anything at all, is a gift few others can provide.
The hospice affect is hard to explain to outsiders. Sometimes, only in the company of strangers, can we feel free to be open and honest. Sometimes, freedom means not feeling the need to protect or withhold or edit ourselves for fear of how we will be (mis)interpreted. Sometimes, opening the door to trained hospice volunteers willing and able to enter our homes when it feels like everyone else has exited long ago, reminds us that we are still worthy of attention and connection. Something strangely beautiful can happen when we greet others who see us in the midst of living while dying. Thank you to those who knock on our doors when life is still being lived.
Better yesterday. Better today. And ________________________ tomorrow. The gravitational force of expectations means that you most likely had no problem filling in the blank consistent with an ever expanding “even better tomorrow.” Better is what we all want. Better is what we expect because we’re told and retold to fill in the “blanks” of our lives with this universally celebrated refrain.
Progress is something we all want but our belief in progress can often trip us up because we mistake our bodies with things. We can predict things because things move in ways consistent with laws of physics that propel and constrain objects in predictable ways. When it comes to our expectations for loved ones, progress can betray . . .
A young mother weeps over her child’s return to a rehabilitation center after weeks of positive recovery from a disease that robbed him of his speech and movement.
A loving daughter mourns over her father’s inability to read the morning paper after having made progress from a stroke months ago.
Weeks after a complicated and last-ditch surgery, the pain is returning in ways that reminds you of the past.
Deep disappointment and disorientation are ocassional side effects of progress because we can’t help ourselves from wanting and expecting today to be better than yesterday and yesterday to be confined to the past tense. When our bodies don’t listen to our pleas, we can’t help but find ourselves lost and confused, not being able discern north from south, and tomorrow from today, dropping us to our knees in desperation.
Nothing makes sense.
Everything used to make sense.
If I can’t expect yesterday to lead to a better today, what can I believe tomorrow will bring?
We are often sustained by the soaring flag of progress—always planted ahead of us—waving proudly on the mountaintop in the distance. We race toward it. It is lit at night; a beacon of hope to keep us going in the right direction even when we feel like we can no longer move forward. When progress is no longer a guide, what are we left to do and where are we to look for comfort? How do we measure what we are doing when a step forward may also be a step back?
When our expectations of progress are betrayed, it’s hard for us not to believe that we’ve failed. Lost. Given in. Given up.
At these very moments, we must consciously push the idea of progress aside—at least momentarily—to make sure our expectations don’t betray our bodies. Tightening our expectations in these moments of disorientation can help protect us from thoughts that take us too far beyond where we are. Reeling in our expectations can protect us from ourselves when we trip on the idea that we aren’t where we believed we would be according to the unspoken laws of progress.
Don’t worry, we can’t keep our beliefs about progress out of the way for too long. The temptation to lean on progress as a way to mark time and success inevitably returns. But sometimes, in our darkest moments of disorientation, the allure of progress can ambush our thoughts of the future—making it difficult to be in the present. We are here. This is now. We are here. This is now. Tomorrow will sure enough find us, but sometimes we can cheat today by preoccupying ourselves with tomorrow before it arrives. When I’m consumed by thoughts of progress that don’t (or won’t) correspond with what is occurring, I try to remind myself to follow a simple but ever-challenging rule: My thoughts of tomorrow should never arrive before the rise of the morning sun.
It was the way she smiled back at me that I froze in my mind. Hollowed cheeks and bald head but for a small fray of hair reminding us of what used to be, her teeth shone in ways I hadn’t noticed before. The scar running across her head framed her deep brown eyes and widening, child-like grin spread across her ashen face as if it was boldly protesting what was happening inside of her.
Maybe you remember watching your loved one staring out his bedroom window, minutes before you were scheduled to leave for the airport after having spent a week at home visiting? Or maybe you remember trying to capture a last moment in time—listening in tune with her labored breathing, imagining what she was thinking about as you sat nearby, unsure of when you might be able to return?
In the midst of the uncertainty of what will happen between departure and our next arrival—we can’t help but cling to certain memories. But our memories of those we love aren’t like the selfies most others take and post across social media. Our freeze frames of those we love are special because they are . . .
(1) Deeply Ordinary—Selfies require the art and performance of posing. Nobody poses in our freeze frames. We don’t want to capture life—for others—we want to remember life as it was lived. We want to remember what happens in the middle of the ordinariness of life, not on top of the tallest mountain or walking on stage to receive an award. Unlike the staged, selfie moments that live only long enough to be noticed and celebrated by those who know of us, our mental freeze frames invite deep awareness of the authentic, uncelebrated moments that bring us closer to our loved ones.
(2) Sense Based—Our memories can’t be contained in the visual dimension alone. The sound of a loved one’s voice makes a terrible selfie but a lasting freeze frame. The aroma of the food he baked in the kitchen. The way she sipped her coffee. The sound of his rising voice when he became passionate about an issue. The rounding of the lines around her eyes when she laughed. The touch of his gnarled hands. The strength of her embrace. The smell of perfume. The sound of his favorite shoes as he walked with purpose across the hardwood floor. The parts of our loved ones that we hold sacred in our minds can’t be understood only by what we see. Our freeze frames can’t ever be divorced from our senses because they are multi-dimensional, evoking textured awareness that connects us to the presentness of our past.
(3) Private Property—Memories we consciously freeze frame are not meant for others. Selfies are public property whereas our memories are special because they are ours alone. We are needed for them to make sense. We are the freeze framer and the sole interpreter. Everything must be translated—that’s exactly the point. Our memories can never stand alone. We must always be with them. Selfies require us to think of others first—our desired audience—and then contort our lives and our bodies to create the image we think others want to see. Our mental freeze frames begin and end with us—they are all about what we want to feature and how we want to see the world. Our memory is our truth. Period.
(4) Time Defiant—Selfies inevitably fall prey to the whimsy of time. They are
time-stamped and quickly reduced to the digital trash folder of the past—constantly replaced with newer and bolder and fresher images for our audiences to see and admire. On the other hand, our memories are timeless, not timely—they can be accessed whenever we want and need them. The sound of our loved one’s laugh can still resonate even in silence. It finds us and surrounds us when we need it most. When the room is silent, we are transported in ways that allow us to forget where we are and to live in a space that doesn’t discriminate between past and present.
If you’re like me—there is so much you know and understand about someone you’ve cared for that you won’t be able to share with others. Sometimes, I’m deeply saddened that certain memories are mine alone—incapable of being shared with others in ways that only I understand to be true. But I am also comforted by the reminder that I am the sole writer and director and producer and audience of my memories. And so, they can’t be tainted by others. They can’t be compromised by others. I don’t need to explain or justify or crop or add a filter to improve them. They are uniquely mine—and because of that—they are perfect just the way they are. The one permanent in a world of change.
In almost all aspects of daily life, competition is valued as a goal unto itself. Doing well, succeeding, and making a difference are almost always evaluated through the formula of competition—my win is your loss, your victory is at my expense, I am the best (because I beat you). Viewing life as a competition is the norm . . . except when it comes to the life-altering context of caregiving.
Too many people overlook the value of the caregiver role because care goes against every sacred value of competition. The obsession with competition has crowded out the private and public values of care so much so that it’s time we begin rethinking the qualities we believe worthy of admiration because . . .
• Competition closes you off to others. Competition reduces dynamic, complex people to mere competitors. Competition shrinks the world around you when dealing with others, reducing our attention to others’ perceived threats. Everything else becomes unimportant but for the fact that you will be competing against the other for a seemingly scarce resource—a prize, a promotion, a race. Care, on the other hand, opens you up to others allowing us to see how the person we care for is connected to our past and present. Care allows us to see others not as threats, but as allies. Care invites us to view others as whole people, with a multitude of life experiences and perspectives that don’t ask to be changed or converted—just appreciated.
• Competition prevents meaningful collaboration. How can you collaborate with someone when you are so busy trying to exploit their weaknesses? Competition doesn’t want you to know your competitor’s name or story or individuality. In the midst of competition, you are either with me or against me—transforming the person nearest to you into an object, a thing, a source of difference—a threat that is only understood as an other. Care, on the other hand, opens us up to our shared humanity. Caregivers work from the belief that we are all alike—our fragility is the gravitational pull that blurs differences in ideology and belief into the background amidst the overwhelming presence of genuine care. Care invites us into knowing that our frailty is both reason and justification unto itself, a bridge to the other, rather than a reason to retreat.
• Competition reduces relationships to winners or losers—leaving nothing else in between. Competition is about the end results, period. Everything is measured and evaluated through the very empty metric of win or loss, tainting all other aspects of the relationship. Care, on the other hand, is all about process. Care has everything to do with what happens between beginnings and endings. For caregivers, the ephemeral present is supreme, as what exists in the moment is often lost in translation when explained or justified in the language of “results.”
• Competition is showy. “Look what I did.” “See how I’m better than the rest.” Standing above others, the competitor thrives in the glory of the limelight, eventually allowing the private self to be suffocated by public adoration. Care, on the other hand, is anonymous. It thrives in the middle of the night, when no on seemingly notices. It continues on without being heralded. Caregivers fit in, they don’t stand out. There will be no new discoveries in care that are covered on the nightly news—just their overwhelming comfort that lingers long beyond external applause.
• Competition puts a price on everything. All competitive activities and relationships are reduced to a rational, costs-benefit analysis. “I should engage in this activity because the rewards will outweigh the costs.” Care, on the other hand, defies economic models and rationality. While game theorist hypothesize and measure from afar in the sanitized echo chambers of rationality, we are busy being with another as life unfolds. Being near those who need care may provide us no economic benefit, no fame, and no glory. And yet we do it anyway, hour after hour and day after day. Care defies outsiders’ hypothesis or predictions because it’s impossible to assess what happens when care meets love.
Care isn’t just a private statement. In today’s world, it’s a political statement as well. It’s a reminder that change isn’t always voted on. Leadership isn’t always something we cheer for—it happens when most others aren’t looking. It’s time we begin rewriting the qualities we believe necessary for public admiration. “Winning” is fine, but it’s not nearly enough. Show me a person who has cared for another, and I can show you a person who won’t easily confuse applause with quality, accolades with trust, and riches with value. Isn’t it time care became the new prerequisite for leadership?
We don’t think twice about insurance anymore—car insurance and health insurance are musts in our lives. But we also need a type of insurance most of us don’t think much about until we need it—the safety, solace, and strength we can draw upon from our social networks when we are in the midst of our greatest need. Social insurance doesn’t protect us from life, but it can provide us the assurance of being heard and understood and appreciated when we most need an audience.
Our smart phones organize people we know via our contacts’ list, but this is efficiency at its worst and least effective. For most of us, our contacts are organized according to alphabetical order, not need. People are organized in ways that help us easily access their names, not in ways that remind us who we can go to, lean on, and trust when we feel like we are falling apart. Instead of deferring to the alphabet, it’s more helpful to begin rethinking (and reordering) the people in our contact lists by the type of audience role they might fulfill when we are most in need:
- Ventees—These people are ideal to share your deepest frustrations with. Frustrations need to be vented and this audience allows you to reveal your anger or disappointment or sadness in its purest form—without remorse. This audience won’t hold you hostage to appropriateness nor do they believe that what you say is what you think. Rather, ventees can provide you freedom to indulge in the moment without apology or shame because this audience knows that feelings are an expression of the moment, not a permanent state of mind.
- Celebrators—Yes, we all need someone to celebrate with. Despite what we often think, not all people are ideal to share great news with. Who in your care crew can genuinely be joyful for your private accomplishments and small achievements? Who will allow you to revel in what most others take for granted—making it through the day, getting three hours of uninterrupted sleep, sipping a fresh cup of coffee. Celebrators are so vital to social well-being because they don’t take us out of our moments of joy by reminding us of what is next, or what has to be done, or what may loom in the future. Unlike most others, they allow us to simply be and enjoy the smallest of life’s pleasures even when life is challenging.
- Off-Stagers–We all need someone we can share presence with in our darkest moments. Off-stagers allow us this privilege because, when we interact with them, we can stop pretending to be something other than what we are feeling. Off-stagers allow us to be with them in the midst of chaos whereas most others are only comfortable with us long before or long after the dust of chaos has been settled. With this audience, we can be un-make-upped, unkempt, out of sorts, and incoherent because we can rest assured knowing they appreciate the importance of our off-stage self as it is, not as the rest of the world needs us to be.
- Laughers–We need people we can laugh with. This audience can be challenging to find or access because most others believe laugher in the midst of challenge is taboo. Laughers, however, are so important to our well being because they can get us out of ourselves long enough to help us see our experiences through new eyes. People whom can find humor in the undesired—suffering, pain, challenge—aren’t scared about inviting us to react authentically and in ways beyond the clichéd requirements of sadness and tears. Although sadness and tears can be present, these people also make room for laughter as a response to life’s challenges.
- Doers—Many people may fit in this category of providing tangible help in time of need, but there may be people in your social network whom are better doers than others. Quality doers do, they don’t over-promise what they are going to do. They show up when they say they will. They drive you and your loved one to the hospital and back. They bring food to you on a regular basis. Quality doers don’t need much from you. They don’t need long letters of gratitude or promises of immediate reciprocation that would only serve to make us feel guilty for their acts of goodness. They do because they can, and they understand that doing isn’t about them, it’s about a form of care they can provide.
- Sense makers—These are people whom you can turn to help you make sense. They don’t fix or make your challenges go away. No, sense makers provide you an audience while you process your experiences. They are gray—not black and white—thinkers who have a higher tolerance for ambiguity than most others. They have a special capacity to allow you to share your thoughts without judgment, allowing you the benefit of hearing yourself talk through ideas out loud so you can process your thoughts beyond the running monologue in your own head. For some, sense making occurs through prayer. For others, sense making is accomplished through lists highlighting pros and cons. For others, sense is made through philosophy, shared presence, or shared touch. Whatever the approach, sense makers can provide the greatest gift of all—insurance against the sound of our own voices on endless repeat.
Everyone needs a care crew whom we can draw upon when we need social insurance against the inevitable interruptions of life. Some of us may still be looking to be heard or understood or embraced. Some of us might find that one or two individuals might fulfill all of these audience roles. Others might discover that the people we thought we might be able to call upon disappoint us while others whom we didn’t expect to help, rise to the occasion to provide support in ways we could never have imagined. As our needs change, so too do our needs for different types of support audiences. Life’s challenges are inefficient and messy and overwhelming. It’s time we begin rewriting our contact lists—not based on alphabetical order—but by their ability to support and interact with us when we are most in need.
Just the two of you but nothing is said between you. There should be so much to say. So much you wanted to say. So much you thought about saying on the drive over to visit. But here you are, sitting only feet from your loved one and there is nothing but silence. You can’t help but panic as your muscles tense and your worst thoughts begin to take over: “Is everything okay?” “Is she mad at me?” “Did I do something wrong?” “It was a mistake to visit.”
For most of us, silence is one of the great social fears we experience when in the company of another person we care for. Most of us are taught that if we don’t have anything to say, then we shouldn’t say anything at all. It’s no surprise then that as adults, all forms of silence are almost always perceived as awkward. So, it’s no wonder that when we are physically sitting next to someone we know and care for and experience moments of silence, we think something is terribly wrong because we mistakenly believe that:
If we’re not talking, we’re not relating.
If we’re not talking, they must be upset.
If I don’t have anything to say, I shouldn’t have come to visit.
If he/she doesn’t have anything to say, I shouldn’t have come to visit.
Talk is the only way to become close to someone.
Each of us is highly educated in knowing how to make sense of others’ words. Unfortunately, no one taught us how to interpret others’ silence or how to be with another without having to say a word. As caregivers, silence is a language we need to understand because it is so often an essential part of our relationship with those who are tired, ill, or unable to speak.
The next time you experience interpersonal silence keep in mind the following communication principles:
Silence can bring you closer to another. When you share a view of the sunset with someone, the awe of the beauty before you transcends anything you could say. Simply sharing that moment together, without the need for words, inspires a shared, deep appreciation of the moment. So why not allow the shared moments of silence bring you and your loved one closer together as you share in the miracle of co-presence. What makes interpersonal silence seem so awkward is our expectations that every second has to be filled with words. Being physically present with your loved one says more than you could every put into words. Awkwardness quickly flows into appreciation when we trust ourselves in knowing that what we are sharing together in physical presence is more important than anything we could say
Silence can be an incredible interpersonal gift. We’ve all been in the company of special friends or loved ones for whom we felt the luxury of not having to fill every moment with words. Knowing we don’t have to talk makes these relationships special because we “get” one another even in the absence of words. Likewise, your level of comfort with silence when in the company of an ill loved one can give them the greatest gift of all—permission to be themselves in your company. They don’t have to put on a show. They don’t have to “get up” for meeting you. They can be authentically themselves. Knowing they can sleep peacefully in your company or listen to you without having to give you verbal feedback means you will be different than most others whose presence requires them to be something other than they are feeling or experiencing. Your comfort with silence is an incredible gift of peace.
Silence can heighten appreciation of the moment. When we let go of the need to fill every moment with words, we become more perceptive of the person you are sharing space with. We become more aware of the setting we are in. And we become more mindful of our very presence. The moment is allowed to speak to us when silence exists. When we become comfortable just sitting with another without speaking or being spoken to, awkwardness falls away and deep appreciation fills our senses. The smell of our loved one’s perfume is noticed. The deep rhythmic breathing of our loved one’s breath becomes a lullaby. The shape of our loved one’s mouth becomes more pronounced in our memories. And the touch of their cold skin against our warm fingers blends into a perfect union of temperature.
When our words are allowed to rest, our other senses come alive, filling in the gap with understanding that is as valuable as anything we could say. When our expectations for words is replaced with the belief that silence can bring us closer together, we will see, hear, and experience moments of eloquent connection that we may not have been able to achieve when too preoccupied with filling silence with words.