Who wants to visit someone in a hospital? Too depressing, right? Who feels comfortable walking into the home of a friend or neighbor who is chronically ill? Too awkward, right? Who knows what to say or how to act around a work colleague whose preterm child just died? Too personal, right?
This is how modern life works. When things are going well—people are around. And when life becomes strange, fractured, interrupted, inexplicable, messy, uncertain—others willingness to engage silently evaporates. This doesn’t necessarily happen because people are bad or mean or even insincere (even though it often feels this way). So, why do we often feel like the people we expect to comfort us too often disappear into the background when we most need them?
We have a cultural care problem that too often leaves us unprepared to comfort those in need. Throughout our lives, we are taught (and rewarded) for celebrating ongoing and never-ending change.
In the world of commerce, we are constantly being told we need to buy this or get that so we can become something different or better.
In the workplace, we are expected to constantly improve and our performance evaluations are based on proving how much we’ve done, accomplished, and changed over the past year.
Even in our most intimate of relationships, we ask those nearest to us to constantly change . . .
“I love you but I need you to value your health more by losing weight.”
“I love you but you need to be more passionate if this is going to work out.”
“I know you work really hard, but it sure would be great if you made a little bit more money.”
Our culture tells us that acceptance is always synonymous with settling and resignation. So, is it any surprise that our preoccupation with constantly changing ourselves and others has become memorialized into common sense . . .
Engaging with others should always come with conditions.
Change is always possible and within our control.
Tomorrow will always be better than today.
Acceptance and satisfaction means settling and settling is a sign of failure.
Our collective faith in perpetual change gives us a place to focus our attention, dreams, concerns, worries, needs, and hopes. But an exclusive preoccupation with change also makes it difficult to know how to act or what to say or how to be when we are in the company of someone whose life situation calls forth acceptance—not change.
When we are asked to be with the person in front of us, not the past version of that person, not the future possibilities of that person, not the person you need him to be, or even the person you want her to be—but the person next to you, yes, that real person—is it any wonder too many of us become overwhelmed and rendered incapable of connecting?
What do I say? What can I say? What would I talk about? What can we possibly have in common? I don’t want to be rude, but what can this person do for me? Where will this conversation lead? Why would I connect with someone and risk getting close when there’s no way to predict what tomorrow will bring? I just want more, what would I have in common with someone who doesn’t want that?
Nowadays, genuine, deep care requires a corresponding type of rejection. In accepting the person nearest to us who is in need, we also have to reject the habit of looking through people to find a glimpse of our future, as if the people we are with are simply a means to something better. Accepting another person without conditions can be blinding because it asks us to be with another without the protection of talking about what isn’t happening, what should be happening, and what we want so desperately to happen.
When people ask you why you are a caregiver, or question how you have been able to care for a loved one for so long, or why you are such a good friend to others in their times of need, what they are really asking is how can you possibly engage another without the filter of change?
While most people are obsessed with persuading others to become and do something other than what they are now, they miss what we have trained ourselves to appreciate. On the other side of change is a frame of acceptance—a radical way of being with another that invites dimensions of deep connection. When reaching toward others, what would happen if we gave ourselves permission to connect without the expectation that the person in front of us need be anything other than who they are—now? This simple but profound orientation might just be the invitation to connection that reminds us—and them—that not everyone leaves when need rises up.
You feel alone. Exhausted. Calm one moment and overwhelmed the next. Certain that you could never have prepared for what you are now experiencing. You want to reach out and find comfort—but how and to whom? Before long, the desire to find someone who understands is replaced by the belief that no one understands and no one needs to understand what you are experiencing.
There has to be something between yelling out “I need help” and responding to earnest queries from others with a poised, “I’m fine.”
We unquestionably pull over for emergency vehicles as they race us by, sirens blaring, lights flashing to rescue and help someone in need. Yet, at the same time, our ritualized appreciation of acute emergencies has also desensitized us to our everyday uncertainties and concerns that too often go unnoticed, discarded not by intention but because chronic challenges of care don’t fit in a culture that recognizes emergencies but little else, because…
Physical emergencies call for immediate action, everyday needs are messy and ambiguous. Our culture plans for emergencies. We drill. We talk about how we might respond. We strategize about whom we might call and where we will meet. Emergencies call us all into action—out of our everyday routine and into response mode that is singularly focused. Chronic care and relational needs, on the other hand, just don’t work that way.
Ongoing challenges are messy because they are often invisible and unknown to others. They don’t call attention to themselves unless we call attention to them ourselves. Who wants to be their own PR person for our privatized feelings and angst?
“I’m really struggling but I don’t want to make a bigger deal of it than it is. I mean, it’s not an emergency.”
“I am so in over my head that I wouldn’t even know where to begin. I’m so embarrassed that it’s gotten to this point that I wouldn’t even know how to reach out.”
“I don’t even get what’s going on with me—how could I begin to think about explaining it to someone else?”
How many of our everyday struggles and doubts and uncertainties get lost right here—in this moment, when we censor ourselves because we mistakenly believe that since what we are experiencing isn’t necessarily an emergency, it shouldn’t be shared, can’t be shared, won’t be understood, and won’t be cared about?
Unlike an emergency, when it comes to our everyday needs, there is no universal audience that will immediately get what’s going on. We have to create our own audiences when it comes to sharing our everyday needs and that requires choices and effort and too often . . . silence. We don’t have a siren. And if we did, people would probably tell us to turn it off because our concerns don’t have clear beginning and ending points—they linger, taking their own time, disrupting our lives in ways that defy speed and closure and containment.
Emergencies ask us to get out of the way and find help. The sharing of everyday needs calls us close and always changes everyone involved. An emergency, by definition, necessitates immediate action and response. Most of us respect the nature of emergencies by getting out of the way so professionals can do their thing. They know what they are doing—we don’t. Everyday, chronic needs don’t ask us to be spectators—they implicate everyone involved and require us to be in the way.
When we seek to share our own concerns, those closest to us become implicated. There are no spectators because we are really talking about ourselves and those closest to us. Our vulnerabilities. Our fears. Our biases. Our expectations. Our histories. Our futures. Our reputations. Our relationships.
“What do you mean you’re no longer happy? What does that mean for us?”
“I know you are overwhelmed caring for Mom, but I don’t live near her, so what do you want me to do about it?”
“My illness isn’t just mine, it’s going to affect us and our entire family.”
“I’m worried about Dad. Do you think we should talk to him? We’ve avoided the situation for this long, but I don’t think we can any longer.”
Flashing lights and screaming sirens don’t accompany our chronic needs. No one pulls over for them. No, these ongoing challenges are quietly integrated into our relationships. Hinted at. Teased out in subtleties and reserved for those we most trust.
As we become ever more skilled at talking about the spectacle of public emergencies, our ongoing struggles are being pushed out to the margins of view ever farther outward
“Not worthy of a ‘like’ on Facebook.” Ever farther outward. “Not appropriate for dinner conversations.” Ever farther outward. “Not fun enough to talk about when out with friends.” Ever farther outward. “Too revealing to open up about at work.” Ever farther outward. “Leaders are supposed to show strength, not vulnerability.” Ever farther outward. “Don’t burden them, they’re your kids.” Ever farther outward. “Not now, it isn’t the right time to bring it up.” Ever farther outward. “I don’t want my family to worry.” Ever farther outward.
What would happen if amidst the sounding screams of sirens, we also paused long enough to listen to the whispers of the everyday needs and concerns of those nearest to us who don’t call out to be saved, but to connect? Don’t just pull over, listen closer.
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.
Dr. Zachary White is the co-author (with Donna Thomson) of “The Unexpected Journey of Caring: The Transformation from Loved One to Caregiver.”
The permanence of loss takes a lifetime to reconcile. It’s far too overwhelming to appreciate what permanence really means at any one point in time. Maybe that’s why permanence reintroduces itself to us again and again throughout our lives.
Permanence, I know you well by now, so many of us do, but you still surprise me, especially . . .
On Holidays. Mother’s Day. Father’s Day. Birthdays. Anniversaries. Hello again, permanence—at least I expected you on these days of celebration. I planned for you. You planned for me. These wonderful holidays are defined by being in the company of those we love. Permanence, you are so overwhelming because you introduce yourself through absence—in the darkened corners of what we feel but don’t know how to make known to others. No Hallmark cards are written for the people we love who aren’t physically present because we’re supposed to send our cards somewhere. We’re supposed to address our letters to someone. We’re supposed to make dinner and honor someone—who is here. Permanence, even though I knew you were coming to visit on these very holidays, you still find ways to surprise me.
That’s what makes you so mysterious and haunting. You’d think I’d be used to your presence on these special days. But, on these days, when I have to think of you more than I want and in ways I can’t escape—you motivate me to retreat into myself even when I’m in the company of others. Conversing with myself while I’m talking to others, you are the echo no one else hears—the echo that, on these days in particular, becomes louder than the actual voices around me.
When We See Beyond the Frame. Others only see the images of people that are neatly represented within the framed borders of pictures. Permanence, you require us to notice who isn’t in the picture—beyond the framed border of living and dying. You call us to notice what is and what isn’t. What used to be and what is no longer. Others only recognize what’s right before them but you always remind us of the white spaces of loss and grief that others don’t seem to notice.
You make us see who isn’t where we thought they would be—the excluded spaces in-between then and now, yesterday and today, lost and found, remembered and forgotten.
Silence is the response you invite even though each day we think about trying to bring our multiple realities into existence for others to verify. But it’s too easy to become overwhelmed by the burden of introducing our multiple realities to others. Silence reminds us that you—permanence—are here and everywhere, a constant voice that only we hear. Those not yet touched by your presence see the world around them in the fluidity of one dimension. Those of us who know you well quickly realize that we are marked by a deep awareness of realities that feel paradoxical—present and absent, included and excluded, contented and yearning, here and there, inside the frame and beyond the frame.
When We Get Caught in Traps of Time. Grammarians clearly weren’t thinking of you when they created discrete categories of past, present, and future. Most people categorize their lives into what happened, what is happening, and what might happen, a seductive orientation to time that makes complete sense when there is no reason to defy the laws of grammar. But permanence, you trip us up all the time because you know that these same categories delude us into believing that what has happened is over and distinct from what is happening and what we believe might happen in the future.
Others mark their time by years with someone. We mark our time by years without someone. Permanence, we feel overwhelmed in your presence because we know that time doesn’t flow evenly and orderly, but rushes through us and past us and onto us, washing away the boundaries between past, present and future.
Approaching permanence is like looking at the sun—you can’t stare at it straight on. Yet, it is always reflected in what is said and what is not said and who we see and who we don’t. In the shadows of our everyday lives, we are constantly forced to reconcile the endless shades of permanence that change us throughout the course of a day in ways that disappear as quickly as they appear.
Permanence, if anything, you remind us—whether we want the reminder or not—that you refract our attention and understanding in ways that makes us question what is real and what isn’t.
We hear it. Others believe they are giving us a compliment when they remind us of how “special” we are because we are caregivers. Beyond the comments of appreciation and disbelief—“How do you do it?”—others’ reactions to our care can’t help but make us feel different. Are we really that special? Are we really that unusual? Is it strange that we are caring for someone we love in their time of need?
What is it about caregiving in modern life that makes this role so unusual, so mysterious, so needed and yet, so marginalized?
It’s Difficult to Care for People Who Have Beliefs — Wouldn’t it sound odd to ask parents of a newborn, “How do you do it?” “Why do you do it?” Unlike parents of newborns, caregivers typically care for people who have beliefs. People who have said ‘yes’ and ‘no’ throughout their lives—making the care role seemingly more challenging because we find ourselves caring not simply for a body of an innocent and promising young child, but for a body full of ideologies and agendas and choices and regrets and mistakes and confusions. Caring for an adult human being means caring for another in spite of relationship conflicts, in light of political disagreements, and even when knowing that the person we care for is not perfect.
Others can’t help but marvel at our willingness to care despite everything the person in front of us represents or symbolizes.
Care isn’t simply about the endless tasks of caring for a loved one’s body—it’s about a willingness to overcome the differences that keep us separate and apart and distrustful when our bodies are healthy.
Unlike others who are mystified by what we do, our care is viewed as a radical act of heresy because it means we are willing to care alongside our fears, hesitations, and disagreements.
There’s More to Relationships than ROI (Return On Investment) — Throughout our lives, most relationships are based on an unstated arrangement—we engage others when we gain something from being with or near them. We receive something from someone and we provide something for another, making it possible to justify our time and energy and attention and physical presence. This type of reciprocal exchange makes so much sense when relationships are perceived as equal—“I’m giving as much as I’m getting and I’m getting as much as I’m giving.”
When it comes to caregiver relationships, everything is turned upside down. Caregivers rupture the unquestioned assumption that we should only engage in relationships in which we gain as much as we give.
“Let me get this straight—you care, day after day, and you get what in return?”
Your care, your willingness to be with another without the assurance that you will gain advancement, fame, money, solace, comfort, or fulfillment—can’t help but make others uncomfortable because it defies the expectations we bring to almost every other type of relationship. Your ongoing care means you must know or understand something about human connection that makes others question everything they believed to be true about relationships that matter.
You Can Be With Someone Without Trying to Change Them — Throughout adulthood, culture celebrates an ongoing intolerance for acceptance. Never settle. Never accept. Never stop. Never stop wanting. Never stop trying. Never stop desiring. Never stop persuading. Never stop wanting something more than what is before us.
Others preoccupy themselves with changing the person in front of them—“More of this,” “Less of that,” “You need to do this,” “You can’t do that.” This is called care and love in most other relationships, but this way of engaging another is built on the belief that care means focusing on who we want (and need) the people we care about to become.
Caring for people who are ill and not getting better requires something of us that others find hard to imagine: a greater tolerance for acceptance. Even though we have a higher tolerance for acceptance when caring for our loved ones—it doesn’t mean we settle. No, we simply see differently. We are open to noticing the person in front of us without the distorted lens of what could be. We realize that when we drop our obsession with seeing what isn’t—rather than what is—something emerges that is missed by most others. We try to care for another without obsessing about the future. We seek to care without focusing only on what is missing.
When we care through a frame of acceptance—rather than change—we allow our attention to be directed at the realities before us, rather than the endless possibilities of what might be, and what could be, and what should be, and what may never be.
The next time someone compliments you on how special and different you are for caregiving, it’s great to appreciate their comment. But remember, it’s not just the fact that we care for another that makes us different, it’s that we are engaging in a way of being and valuing another that defies what others know to be true—or even possible.
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.
Confidence is a preoccupation for most of us. We worry about building, losing, demonstrating, and developing confidence because we all want it—the ability to walk into any scenario armed with an unwavering belief in ourselves and our ability to influence people and solve problems. This is the kind of confidence we typically look for in leaders, but there is a different kind of confidence no one talks about but you demonstrate all the time—caregiver confidence.
Unfortunately, the way we typically think of confidence requires us to believe that we are better, smarter, more knowledgeable, and more competent than those around us. This kind of confidence only works if we believe we are fundamentally different from those around us. It presumes that the confident person already has the answers and always knows what’s going on—as if confidence was something we possessed. In the process, we can become so focused on proving our confidence that we lose touch with the very people around us because of an overwhelming concern with how we look and sound and act in front of others.
Caregiver confidence isn’t about what happens in front of a general audience—it’s all about what happens when we are near those we love. Caregiver confidence means we don’t assume anything—our confidence comes from questions—not answers. We listen and observe to find out what is going on. What does the person I care for want? And know? And believe? And value? We don’t worry about “building our confidence” because we know it’s not just about us.
Instead, we constantly reconcile ourselves to the situation at hand—not the situation we necessarily want. Not the situation we believe should happen. Or the situation we wish would happen. Our confidence isn’t about asserting ourselves to make others conform to us, it’s about integrating ourselves into others’ lives as they are.
Too often, people assume confidence is built around an unwavering belief in what should be done. This would be sufficient if we were working with mere objects. But we aren’t talking about spreadsheets and analytics. Caregiver confidence doesn’t allow us the luxury of making grand proclamations promising to solve our loved ones’ problems and frustrations and suffering. No, everything we say and do is grounded in a radical humility earned from a willingness to listen to the fragility of our loved one’s bodies. And only by listening do we know that despite what we want to happen, we can’t just promise to wipe away what we don’t want to see or know.
Listening and connection are the architecture of our confidence.
The next time someone tells me that I appear to be “lacking” in confidence—I’m going to remind them that not all confidence is created equal. But I have to be honest. It’s nearly impossible to explain caregiver confidence to outsiders because our confidence is demonstrated when most people aren’t paying attention. Our confidence means being present for loved ones long after others’ loud promises and bold proclamations end. You and me—we don’t lose or gain confidence—we’re simply there when others tell themselves they can’t handle it. It’s a willingness to draw our voices and bodies and attention near when vulnerability calls us. Let’s just make sure we never apologize for a confidence that’s not designed to be showy. For us, caregiver confidence isn’t about something we own, it’s all about a willingness to reach beyond ourselves to build something together with those we love.
When life as we once knew it becomes interrupted, our first instinct is to try and remind ourselves that we are not alone. We must tell someone. Someone must know. The search for an audience commences as the news we didn’t expect and can’t wrap our minds around rumbles its way through us. In an age in which we have instant access to audiences, we too often think only of the audiences that can be reached, rather than how the audiences we reach end up shaping us. Friends and family and co-workers, these most caring of audiences, can sometimes unknowingly hurt us. It’s important that we know that sincerity isn’t always a source of comfort, especially when audiences . . .
Ask us to respond to their needs, not ours. “Everything will be okay.” “It’s all going to work out.” “This is part of a larger plan.” We’ve all received these well intentioned, but hurtful responses. Yet, we rarely ask ourselves why these sincere messages hurt so much. These messages hurt because they defy what we are experiencing and feeling. They ask something of us that is seemingly impossible.
“Everything is going to be okay” messages ask us to immediately clean up our confusion and disorientation. No delay. Now. Give others what they need to hear, not what we are experiencing.
“This is part of a larger plan” messages require us to process everything that has happened, will happen, or might happen, and package our experiences into an easy-to-digest philosophy reducing our fragmented feelings and thoughts into one smooth and flowing statement.
Audiences that ask us to translate our feelings and responses too quickly have a low tolerance for uncertainty. They view our anxiety and indecision and confusion as threats to their own world views. Life interruptions are always messy and contradictory. But these audiences respond only to answers—not questions—so anything that we are feeling that can’t easily translate into an ‘answer’ is made to appear angry or defiant or irrational.
Unfortunately, most audiences are trained to hear PowerPoint presentations describing information that fits ever-so-neatly into bullet points, not life interruptions characterized by inconsistency and rawness and anger and brokenness and denial. When others ask us to rush the process of making sense of what is happening to us and our lives, we risk responding to their needs of control, rather than our authentic experiences that rarely align with others’ timetables or expectations.
Chase only solutions—not understanding. “Okay, here’s what you need to do.” “Have you checked out this treatment, it’s worked for so many people I know.” “What’s your plan? Everyone has to have a plan.” Solution-chasing audiences believe the world is filled with problems requiring solutions. Because these audiences care, their willingness to provide solutions is seemingly a sign of sincerity. Solutions are wonderful except when they are treated as the beginning and ending of engagement. Audiences that approach us only with solutions act as if they know us, or know enough about us that they no longer need to listen to both what we are saying and what we don’t yet know how to communicate.
When our feelings and emotions are surrounded by audiences with solutions, care can feel like suffocation. Solution chasers seek to shape us in their image because attaching a ready-made solution to our “problem” reminds them that the world is rational and orderly. When overwhelmed by others’ desire for solutions, we risk thinking about where others need us to be, not where we are.
When the world around us makes sense, it’s easy to be surrounded by audiences. We call them friends and family and colleagues. Only when life turns upside down do we recognize what others need from us when we are at our most vulnerable. We must be aware that those around us when we are most vulnerable also shape us. As social creatures, we always bend toward the beliefs and values of those we surround ourselves with even when doing so may too quickly sanitize our confusions and chaos.
Today, send a special thank you to the audiences in your life who have the wisdom to be in your company without asking, needing, or demanding forced clarity until you are ready. Today, send a special thank you to the audiences in your life who have the courage to be in your company without clear solutions when all others have long disappeared for fear that being near someone without a solution just might be contagious. Too often, we only celebrate those who stand apart from the rest, rather than appreciating those who stand near us even when doing so might appear depressing and chaotic. These audiences are our heroes because they allow us to be ourselves with others without betraying who we are in the moment. Let’s take this moment to remind them, and us, how important it is to be near audiences willing to gather close enough to authentically listen and connect even in the midst of senselessness.
Technology has become synonymous with innovation. And innovation, unfortunately, has become reducible to Silicon Valley technology—ignoring the possibility that human relationships are vibrant sources of creativity that make possible new ways of knowing ourselves and others. It’s time we begin appreciating how the caregiving relationship, in particular, is a site of potent dynamism. If you are in a care-based relationship, you are an innovator because you embody . . .
Spontaneity as a Way of Knowing. A care-based relationship is unlike most other relationships because it’s not exclusively built on expectations of the future. Parent-child relationships are grounded in the promises of what is possible. Romantic relationships offer the promise of exclusivity and fidelity in perpetuity. And friendships remind us that we are the same yesterday as we will be tomorrow. A care-based relationship, however, is all about a willingness to embrace another despite the future.
While others may see the lack of possibility because of an indefinite future, care innovators find meaning in a place few others dare enter—the radically spontaneous, unpredictable possibility of the moment that promises nothing other than what we make of it. Care innovators don’t use the present as a means to shape the future—they use the present for connection while all else disappears into the background.
Care innovators are the explorers of the 21st century—daring to venture with another without the comforting predictability of what will come next. This kind of innovation takes courage and risk, and yes, caregivers are those willing to risk closeness without knowing what will happen tomorrow. While most others fret over the possibility of losing control, care innovators continue caring even when controlling what will happen next is not possible.
Acceptance as a Way of Being with Another. “How do you do it, really?” “I couldn’t do it, I care too much.” “I would start crying every time I enter the room.” Care innovators often hear such refrains from sincere people when explaining why they can’t engage in care-based relationships. So what source of innovation do caregivers draw upon that other people seemingly don’t have? A caregiver’s capacity to enter into a care-based relationship is all about an act of disruption that most others don’t even attempt. Most people approach relationships from a prism of change—I need to change you to become more like me. No one ever says this explicitly—but change is the underlying assumption in almost every other type of relationship. . . If only the person nearest to me could think like me. If only the person nearest to me, could believe like I believe. If only the person nearest to me could make decisions like me. You are perfect—don’t ever change.
Caregivers, however, lean on the most disruptive form of human invention ever conceived: acceptance. Yes, acceptance is disruptive when it comes to orienting ourselves to another. Acceptance is such a rarity because it asks us to risk engaging another on her terms and where she is, not where you want her to be. Not where you need him to be. Not where you are asking him to be—where he is now.
Care-based relationships accept the uselessness of asking a loved one’s body to be or respond in ways that it isn’t or can’t. Yes, we can still want someone to improve and get better, but innovators experience care-based relationships on a multi-dimensional plane that does not stipulate acceptance on the condition of improvement. Care innovators’ radical acceptance means reaching out to connect at the very moment when the world around them uses rejection as a form of protection from awkwardness, discomfort, and the grief associated with what may no longer be possible.
A New Way of Achieving Closeness. Most relationships are assessed by time alone. “How long have you been together?” “I can’t believe you’ve been married for 35 years.” The assumption is that close and intense relationships take time as two people get to know each other in a way only time will allow. Most people depend on time to help them negotiate relationships. “Don’t get to know someone too fast.” “Only reveal superficial things in the beginning of a relationship.” “Revealing vulnerabilities is only for those who know us best.”
Care innovators ignore these clichés of closeness. They don’t need to know someone’s past to understand who is before them. They don’t need a gradual exchange of information to open themselves up to the person before them in that unique moment. Innovators of closeness don’t lead with pointed questions to find some elusive common ground. Common ground doesn’t need to be found—it is always present but too often it is camouflaged beneath and above a bundle of prefabricated words.
Sharing space without the pressures of information exchange as the sole guiding principle of understanding keeps these innovators close to what is important in that moment—not what we think is important before arriving at that moment. The greatest innovators amongst us are those who possess the tolerance to let the form of their particular and unique interaction be the guide for everything they need to know and everything they don’t need to know to be with the person in front of them.
At The Unprepared Caregiver, we recognize that those engaged in care-based relationships are innovators of human connection. Care innovations aren’t discovered by a lone genius in a garage or a fancy office in Silicon Valley. Relational innovation happens in the privacy of homes. Never alone though. Always with someone. Authentic innovation need not be something you purchase or buy or find in the cloud. The early adopters of such care innovations are title-less and status-less. Their creativity and ways of being are never live-streamed. It’s time we begin awakening to the care revolution that is redefining what it means to be creative and ingenious because relational innovation is happening every day. The next time someone asks you who you are or what you do, say you are an innovator—a care innovator, because you are and it’s about time we begin naming what is happening.
Wherever we are and whatever we are doing, we are only steps away from suffering. In our own room. Down the hall. Across from our cubicle. Next door. Someone, only 10 steps away, is in the grip of loss, ruptured expectations, failed hopes, and insurmountable feelings of disconsolation, as everything they once knew no longer makes any sense. Only steps away and yet, everyday, we conduct our lives as if suffering is strange, unusual, unexpected, and far from us. It’s not that we are uncaring or unmoved by others, but it’s too easy to live in our own private sanctuaries, detached from the nearness of suffering in our everyday lives because we . . .
Wait For the ‘Right’ Moment. Busyness is a reality of our everyday life, but it also serves as our own private shield that seemingly frees us from having to participate in the lives of those nearest to us. Other people’s suffering invites us beyond the well-worn path of busyness. Suffering can be delayed because it isn’t accounted for in our weekly calendars. It’s never scheduled and it doesn’t necessarily have a clear ending point. It’s easy to tell ourselves that, in a few days, we’ll reach out.
“When things slow down, I’ll visit.”
“Later. It’s too fresh. It must be too raw for them.”
“I will. When the moment is right.”
We like to talk about living in the moment and taking advantage of every opportunity. But not all moments are seemingly equal. Stepping into moments that ask us to step out of our habits and into others’ suffering, stops most of us in our tracks.
Suffering destroys time, not simply for the person experiencing loss, but also for those nearby. When we know of someone who is suffering, we fear living in their moment because it means we can no longer control what might happen or what we want to happen. It means relinquishing ourselves to another—beyond our illusions of control and into connection that may remake us in ways we couldn’t have anticipated.
Fear Saying and Doing the Wrong Thing. We want to help. We want to visit. We want to find out how someone is doing in the midst of a crisis. But too often, we don’t. The thought of knocking on a neighbor’s door and not knowing what we will say or what we should say keeps us away from others.
“What will I say? What can I say?”
“I don’t want to say the wrong thing.”
“Should I lean in for a hug? Or wait for them to give me a hug? This is going to be so awkward.”
“What if they don’t say anything?”
Suffering is unlike most other experiences—what we say or do will rarely solve anything. When we can’t make someone’s suffering go away, we tend to stay away. And so we don’t ring the doorbell. We don’t break our routine and walk over to them. We see them. We know they need something and someone, but we convince ourselves we don’t know how—or what—we could provide. And so our deepest uncertainties of something going wrong means the certainty of connection disappears.
Convince Ourselves it’s Not Our Business. Others’ good fortune is always our business. Why is it that others’ suffering is seemingly off limits? We never fear asking others about the grand accomplishments and joys of life, but when it comes to suffering and loss, we mentally create distance between ourselves and others through an endless array of rationalizations that protect us from having to break through the mysteries of what might happen if we entered into their zones of suffering.
“It’s too soon—I don’t even know them that well.”
“I found out about their loss second-hand, on Facebook. I mean, what if they didn’t want anyone else to know?”
“If they want others to know—they’ll tell me themselves. I want to respect their privacy.”
Approaching someone we know when they are in the midst of suffering means we risk social awkwardness. Strange greetings. Awkward pauses. Uncomfortable laughter. The possibility of intense immediacy and connection without the protection of formality and decorum. Yes, these are the risks. This is why other people’s tears usually clear a room within a matter of seconds. Scary and overwhelming, making others’ suffering our business is unlike any other business we’ll conduct that day because doing so doesn’t allow us to be mere spectators.
Each and every day, we have the opportunity to realize that we are only steps away from someone who is suffering. We are all victims of our own reasons for not recognizing that no matter where we live or where we are, we are enveloped in a community of people in the midst of suffering. Today can be a different day than yesterday. This day, as part of The Unprepared Caregiver community, we are grateful for those who rearrange the reasons for avoidance and delay, and reach into someone’s life when they are most vulnerable. It is scary. And strange. And awkward.
Yes, we are grateful for those who remind us that connection is always available when the authenticity of care meets the universality of need. Only by risking connection, might we feel as close to others as suffering is to us.
Amidst the hangover of guilt that spills over from broken promises only days into the new year, remember that we think about the future in ways most others don’t. Those who celebrate aren’t trying to be mean, they simply don’t know that for us, the new year is marked in silence and aloneness. We watch the fireworks on television and think about lives we used to live. When most others finally make it to sleep from a night of partying, we awaken not to the strike of midnight, but by the needs of the person nearest to us. We’re responding to a different kind of resolution. One not recognized by a world dreaming of life without relationships, but one that reminds us that life isn’t lived in grand proclamations, but in the countless gestures of care that never ask to be noticed.
Unfortunately, during this season of resolutions, not all people are welcome. Not all situations are valued. And not all resolutions are noticed. This post is dedicated to all of us who care for others and find ourselves on the outside of this ritual of renewal . . .
- While other people make resolutions about how they want to change—we resolve to continue our care for a loved one. Others’ New Year’s resolutions are all about changing what currently exists—losing weight, gaining adventure, increasing self-confidence, decreasing clutter, more friend time, fewer apologies. Our resolutions are different because the main ingredient isn’t change—it’s sustainability. Resolutions of continuity are rarely appreciated because the day after the new year doesn’t mark a change in ourselves but a continuation of care that does not pause for fireworks or sips of champagne. Though others celebrate the shiny newness of change—we carry on in the often-forgotten, but vital, tasks of caring for someone we love through change.
- While others’ resolutions are bathed in a boundless future of possibility, caregiver’s resolutions are always situated deep within the confines of ongoing relationships. New Year’s celebrations only allow dreams to be dreamed that exist free of a body situated in a specific time and place. To introduce the possibility of life interruptions or context into New Year’s toasts would ruin the party and silence all of those in attendance. On this night of collective fantasy, there seems to be no room for the little details of life and living that connect us to one another. Others’ proclaimed new year fantasies are full of what they can imagine, whereas our new year’s realities have names and histories and call out for needs in ways most others can’t—or don’t—notice. Our resolutions are never reducible to the ‘I’—they are always about how we are joined together with another in ways that most others don’t understand.
- While others’ resolutions are about what is going to be done in the new year, our resolutions are about who we are going to be. Resolutions, we are led to believe, are about grand gestures of promised accomplishment. They are designed to be proclaimed, not listened to. We’re different. We’re used to listening, not impressing. We know from experience that proclaiming falls flat when it meets the realities of our care situations. That’s not what we do. Our resolve is sustained in the silence of our thoughts . . . thoughts that pass from one day to the next without celebration. We don’t preoccupy ourselves with accomplishments that will merit applause. No, we try to sustain ourselves by focusing on what we are creating with those who need us most.
- As others gather together to watch end-of-the-year memorial tributes to celebrities who have died, we care for the people we know and love. Not the people others know, but the people we know. The people that others won’t necessarily tweet about, but the people who have made significant differences in our lives and the lives we care about. Fathers and mothers. Spouses and siblings. Images won’t scroll by with music that makes us nostalgic for people we never met. Our fathers and mothers, spouses and siblings—our loved ones—are near us. We don’t need music and montage to help us remember. We’re in it. They are with us. Not far away. But up close. We don’t have the luxury to reminisce about the past, we are struggling to stay afloat in the present.
During the long days and nights of this year, remember we too are resolved with you long after others have forgotten their resolutions. Our resolutions can’t be forgotten. They are made of love. Though we might feel alone throughout this year, remember this community that celebrates every day of this new year by everyday actions, not by grand proclamations.
It’s that time of year, when we talk about gathering together. It’s also the time of year when many of us feel overwhelmed. Not overwhelmed by others, but by our insecurities that seem most exaggerated and noticed when we are in the presence of others.
Spending time with those we care about can bring into focus parts of ourselves that we like—and parts of ourselves that we are sensitive about. Parts of ourselves we don’t want to reveal. Parts of ourselves we want to hide. Parts of ourselves we are embarrassed by. Parts of ourselves that we can shield from others for short bursts of time—but not the parts of ourselves we can hide from people who know us best and we most care about . . .
I know I can’t hide from you like I do with others. I see it in how you’re looking at me. I know you and because I do, I know what that look means. I know you know what I’m thinking—and I can’t handle that right now. I want to hide right now. I just want to perform without anyone knowing that it’s an act. I don’t want someone to see through me. I don’t want you to call me out. I don’t want you to question me. I don’t want you to know that I’m not okay even though I’m saying everything is fine. I can’t redirect your attention. I can’t trick you. Your closeness scares me.
And so we begin to retreat from the people we know most intimately. Slowly. Distance isn’t like conflict. Conflict is a spectacle—it’s easy to notice because you can point to a clear beginning and ending. It’s available for everyone to know.
Distancing ourselves from the people we know best is different because it’s silent and invisible. Distance is what we create in our minds long before and after we interact, even though it changes everything that can happen when we are together . . .
“I’m embarrassed about what is happening. I’m not who I want to be. I’m not ready for you to hear me like this.”
“I can’t talk about this even though I want to. I don’t know how to start. I don’t know where it will go. I don’t know how it will end.”
“I’m so disappointed in what he didn’t do—but I don’t even know how to bring it up because it seems so petty. But it’s making me upset every time I think about it.”
“I don’t want to let you down. I can’t be this way in front of you.”
“I need to be alone—and get myself together. I need to figure this out on my own.”
“I can’t let her know what I’m really feeling right now. It’s so intense but I don’t know if this is how I really feel—forever—or just right now.”
“I feel like I’ve failed. And I can’t handle thinking you will look at me differently now. I’m not who I want you to think I am.”
Relational distance is what happens when no one else is looking. Distance lives and breathes in the spaces of doubt and the cracks of certainty. My distance eventually becomes our distance. It has to and it always does—even though no one is able to ever trace it back to its original source. This is the danger of the contagion of relational distance. There is no trace of it until it completely infiltrates every part of a relationship. My doubts matter not just for me. They can’t help but become our doubts, and our doubts can’t help but eventually find their way into how we interact…
A hug becomes a quick embrace.
Conversations are shortened.
Touch is avoided.
A text is substituted for the sound of a voice.
Coffee get togethers are delayed.
Eye contact is averted.
Topics are evaded.
Motives are questioned.
The people we care most about can also be the people we are most afraid to give permission to see us at our most vulnerable and afraid. Left undone for too long, momentary distance between two people becomes a fully formed relational habit that erases the past and memorializes distance into just the way we act when we are with each other.
In this season of togetherness, I’m going to constantly remind myself that the best way to protect myself from feeling disconnected from the people I care about is to momentarily silence my vulnerabilities, long enough so a mere embrace can become a hug. So touch is extended longer than I might feel comfortable. So eye contact is maintained even though I may feel inadequate. So I ignore my initial desire to cancel a coffee with a friend. So conversations are maintained long enough to travel through awkwardness. Then, and only then, might I lose myself long enough to create connection on the other side of distance and allow those closest to me to see all the parts of me—not just the sides I showcase to the rest of the world.
When people are gathered together this holiday season, there is nothing that grabs others’ attention more than bucket-list stories about risk and adventure like bungee jumping, skydiving, car racing, river rafting, scuba diving, zip-lining, rock climbing, exotic vacations, and on and on. These activities are almost always met with awe and appreciation because we admire people who push their limits.
On the other hand, caregiving rarely receives much attention from others. We don’t travel to faraway places. We don’t propel our bodies through the air or under the water to feel alive. Speed isn’t the proper barometer for our risks. Yet, what we do is as risky and challenging as any outdoor adventure because it involves so much more than strapping ourselves in a seatbelt. Here’s why our experiences as caregivers push us to our limits but probably won’t receive much attention around the holiday table this season:
- There is no training manual for our care. We’re not professionals. We didn’t go to school to learn how to care for someone we love when they need our help. We’re on-the-job learners. We learn by our mistakes and we adapt in real time and we keep going. There is no set of instructions we can find that will help us figure out what we are doing. Each of our situations is unique. What we do makes IKEA instructions look like a breeze. No one thought through (nor could they if they wanted to) a set of instructions to guide us through the steps of caregiving. There are no steps. We are creating our own blueprint as we go.
- There is no safety net. You can easily read about the specific medical condition of a loved one. And you might have watched a movie about someone who faced a similar situation. But when you’re in it, when you’re caring for someone you love, you can’t control when it begins and when it ends. There is no practice session. No dress rehearsals to help you figure out how you’ll respond, let alone how others will respond. One day, without warning, you’re in it and soon enough, you can’t remember what life was like before.
- Our experiences are beyond pictures. We don’t have pictures to share of what we are doing or what we are experiencing with our loved ones. Pictures are for people who engage in public acts that can be easily captured. What would we take a picture of? A laugh of joy and simultaneous sadness? Physical presence? Picking up medications? Cleaning the house? Worrying? Talking? Watching? Seeking information? Protecting? Awakening in the darkness of the night with questions that do not have answers? Because caring is something we engage in everyday, pictures seem silly. Pictures are for the out-of-the-ordinary experiences, not the everyday. Our life is filled with the ongoing necessities of care, not the vacation moments that wow people.
- It changes you. When you care for someone you love, you can’t help but change. Not the kind of change most others might notice at first, but the kind of change that affects how you see others. What you find important. Trivial. Worthy. Worthless. Some friends will suspect something—“Are you okay, you’re not acting like yourself?”—but it will be hard for you to respond because how do you explain that the person you are now is so different than whom you used to be. There is no radical transformation others can see in you—you might look the same—but caregiving is not like going on a roller coaster where it’s all about the adrenaline rush of what you did—it’s about the slow change of who you’re becoming.
- It’s not on anyone’s bucket list. Most people’s bucket lists are about things and goals they’ve dreamed about—travels to far away places and incredible feats of accomplishment. Caregiving is local. Everyday. Few people ever dream of caring for someone who is ill. Caregiving is about what currently exists—not what’s out there in the great abyss of possibility. It’s real, not imagined. It’s about the person before us, not about our ideal. It’s not about what we wanted, but what we accept as part of caring for someone. Sadly, the courage to care for someone you love doesn’t make the list of most people’s bucket lists.
This holiday season, when everyone around the table is telling you what they did this year, or what they want to do, remind yourself that it’s okay if your care for another won’t make anyone else’s bucket list. You’re engaged in a journey few engage in. You are caring for someone you love without an instruction manual, where you have to adapt each day to changing and unexpected circumstances. It’s messy. And yes, it’s risky because you don’t care for something far away. You care for someone you love. No need for a passport for this journey. No brochures. No accolades or easy-to-translate Facebook posts about your itinerary. You are risking something most others can’t imagine—being so near someone you love when they need you most. The view may not be easily explained to others, but the view does take our breath away nonetheless.
This holiday season, let’s bring something other than food and spirits.
Prior to gathering together with friends and family, there is one refrain that echoes silently within our collective psyche. Before we get on that plane, or in our cars, we go through our mental checklist. This year, it’s all about what we don’t want to talk about. We remind ourselves . . .
Don’t, under any circumstances, bring up the election.
Don’t, under any circumstances, share how I really think about what just happened and what might happen.
But this isn’t our only warning to ourselves. When we gather together with those we care for, something else happens to us. We go into protection mode. Being in the company of family and friends means we should be more willing to let down our guards, right? Too often, this isn’t the case as we perfect the art of maneuvering around the very topics most pressing on our minds and in our hearts. Consequently, our sacred gatherings are too often marked by what we don’t share, not by what we say . . .
I don’t want anyone to know I’m worried about what is happening at work. I don’t want anyone to know that I’m not as confident about the future as they think I am.
I don’t want anyone to know that I’m still grieving over the death of a loved one. I don’t want to depress anyone, this is supposed to be a festive occasion, but I can’t let go of the feeling that things don’t seem like the same anymore.
I’m embarrassed to share that I feel like I’m in over my head as I’m trying to care for my parents and my own children. There’s not anything anyone can do, so why even bring it up?
I’m worried about my father’s declining health that no one will acknowledge. I fear I can’t talk about this without getting angry about the fact that everyone seems to be in denial but me. Why do they just assume I’m going to be the one who takes care of dad?
I desperately want to know why my sister and I don’t talk on the phone like we used to but I don’t want to ruin the fact that we are gathered together, today, even though I know we’ll return to being strangers once we leave each other’s company.
I don’t know how to tell my family that I’ve changed—I’m not who they thought I was. I’m concerned they won’t be ready or willing to accept who I’ve become.
In a world that allows us to pause only long enough for once-a-year gatherings, do you really know who you are sitting next to you? Their names may be the same, but they are not. Do you really know who you are staring at across the table? The routines may be familiar, but their experiences are not.
Why is it that these gatherings become so stressful for so many of us? Amidst our smiles, we are strategically silent and evasive. We worry about what we might (not) say and what questions might be asked of us, knowing that the people that should know what we’re going through, don’t seem interested. Or we think they shouldn’t know. Or even worse, we believe they don’t really want to know. We have reputations to uphold. Appearances to maintain. Relationships to protect. These are our burdens this holiday season.
There are risks in being vulnerable by sharing with others—especially with family and friends. But there are also risks in sharing space with others without fully engaging. Hollowness. Emptiness. Deep exhaustion from knowing we are surrounded by people with whom we should feel free to be most authentic around, but can’t or don’t know how to anymore. Suffering occurs in these very moments when we so want others to know what we’re thinking and feeling and going through, but we don’t feel we can let them know.
So this holiday season, I urge you again to bring something other than food and spirits. Let’s also bring our recipes for connection . . .
A readiness to be open and available to the people who are sharing space with us in that room and around that table.
Questions without agendas that help us give our full attention to those we are gathered with. Not the people we remember them to be. Not the people we think they need them to be, but a commitment to spontaneous and genuine curiosity.
The capacity to listen without judgment that makes it possible to understand, not accuse.
A willingness to appreciate similarity even when, at first glance, we might assume there is only difference.
A tolerance for difference even when, at first glance, we might assume others’ choices are threatening to who we are or what we believe.
We need connection now, perhaps more than ever. It’s not about being political or controversial or right or wrong or left or right or having answers. It’s about being open and vulnerable and honoring our efforts to join others in thanksgiving for the bridges we’re willing to build with those whom we share presence. Then, and only then, can we find ourselves again—with others—if only for a brief moment in time, when all else around us is changing. Change is never as threatening when we allow others into our lives rather than feeling like we have to walk into the unknowns of our future alone.
They are the knock at the door you want to open because they understand the world you’re in when most others are too busy trying to get you out of it.
November is Hospice and Palliative Care month. Every month should be. Every day and every hour really is. Every second is for someone you know and someone you don’t. Life isn’t over when hospice arrives. Life is possible in ways others can’t always conceive—or choose not to.
Thank you to those who help us understand what we didn’t know was possible. In honor of those who may soon join us on the other side of hope, share this message so that they know life does exist, beyond what others call hope. Hospice is waiting to help you and your family—not to take you away from where you are—but to walk into the world you’re in when the unthinkable happens . . .
Most people talk about news like it’s something that happens out there on our televisions. Like it’s something we comment on or react to when we are gathered with family and friends. Most of the time, we can hide from the full force of unwanted news as we surround ourselves with people and information that makes us feel the way we want, avoiding anything or anyone that we think we can’t handle at any given moment. But not all news is created equal. Some news finds us wherever we are and whatever we are doing . . .
“This is not going to get better.”
“There’s nothing more we can do.”
“She’s dying.”
As you hear these words uttered, your mind separates itself from what is going on before you. You’re nodding and making eye contact with the people in front of you, acting as if you’re processing all that is going on, but you’ve already left your old self as a new reality has descended upon you without preparation.
This news is not somewhere out there—it’s everywhere, leaving us without protection as we see the world around us unfiltered, on the other side of hope. It doesn’t allow us to close our eyes because it’s bright and overpowering even in darkness. It doesn’t allow us to turn the other way because it’s there, staring right back at us, whichever we turn our focus.
“This is not going to get better.”
“There’s nothing more we can do.”
“She’s dying.”
Other people think of facts as bits and pieces of information that we gather and think about. These statements aren’t facts. We don’t digest this news. It digests us—rumbling through us, painfully and slowly, staying with us, eternally disagreeable.
“This is not going to get better.”
“There’s nothing more we can do.”
“She’s dying.”
Once we receive such news, all we have is the here and now. To most others, this must be a destination of hopelessness where awkwardness and silence reign. The place where laughter no longer exists and where peace can’t be found. When most others walk away from the world we find ourselves in, hospice walks in. They don’t just provide services. They are trained to find life in a world others call hopeless. They say hello when experts on the future have long since deserted. Nothing more to say. Nothing more to do. Oh yes, there is. There is life here. I’ve seen it. They know of it.
To all of you who walk into our lives when others walk away, thank you.
