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 […]read more...
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.”
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.”
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.”
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.
Interruption finds us all, eventually—even though we spend much of our lives acting as if it won’t. Even though life’s interruptions look and sound and feel different to each of us given our life circumstances, there are some commonalities that we ignore at our own peril. Wherever we are and whatever we are enduring, . . .
- Life interruptions are always a complete surprise. Suffering occurs when we experience something we didn’t think was supposed to happen. Not to us. Not now. Not in this way. Not to someone we love. Not when we least expect it. Not when we can least afford it. Not after so much that has happened before. Not when we are looking forward to so much. Not when we think we have it all figured out. Not when life was just beginning to make sense. Not when we were about to embark on something special. Not after our cautiousness was supposed to be our protection. Not when our fearlessness was supposed to be our source of courage. Not to such a good person. Not to such a special person. Not to such an innocent person. In a world of planning and anticipation, life’s interruptions never come to us when they are convenient—they always leave us feeling unprepared.
- Life interruptions make us think—differently. Even if but for a moment, or an hour, or a lifetime, when interruptions find us we are forced to see ourselves in a way we rarely notice. For a brief moment, our view isn’t simply about looking forward—head down focused on a goal that deludes us into believing that there is a straight and unwavering line between us and our destination. Interruptions don’t abide by the laws of purpose that guide our everyday. Instead, we find ourselves out of balance without a focal point, requiring us to devote almost all of our efforts to simply remaining upright. We ask questions—why us, why now, now what—in an attempt to get back on path, but the more questions we ask, the less sure we are of where we are going. Interruptions steal our past and present and future and rearrange them in ways that no longer make any sense, turning every step into a leap of faith into the abyss of the unknown.
- Life interruptions are felt in our bodies. When life is interrupted—a death in the family, an accident, a diagnosis, a failure that we had not predicted—it eventually finds itself in our bodies. It’s as if our bodies know something that we don’t. Suffering goes beyond our ability to cognitively comprehend. Heads hurt. Hearts ache. Nerves twinge. Stomachs churn. Interruptions find those very parts of our bodies that are weakest and attack them—attack us—into submission and vulnerability and utter humility. Our bodies won’t let us forget that interruption is upon us, conspiring against us in ways that transform the simplest of acts—getting out of bed or engaging in small talk with a work colleague—into herculean acts of courage that deplete our diminishing reserves of energy.
- Life interruptions ask us to be more serious and less tolerant. When our thoughts are filled with doubts and our bodies remind us that they are in charge, not us, we begin to drift. The winds of interruption almost always move us away from others, not toward one another. Simple interactions with good-hearted people remind us of the threats of being with others when we don’t have the tolerance to laugh off an innocent joke, or to laugh at ourselves, or to laugh at our situation. Simple and off-handed comments can burn us as those that we know best can also become sources of angst. In the midst of interruption, our ability to indulge in mere pleasure and joy become increasingly more difficult as the reasons to laugh seem more and more difficult to justify.
- Life interruptions invite Band-Aids, not understanding. When others know we are suffering, they caringly try to make it go away. “Stop crying, please.” “Let’s find a way to help you forget about what is going on.” “You need an escape.” “You need to let go.” “You’ve got to get over this.” The desire to soften another’s suffering is always a social act of care, but it often leaves us feeling even more vulnerable. Well-intentioned clichés begin to fall through our hands like sand when we are gripped by life’s interruptions. Be resilient. Life will get better. You will be stronger. Life will move on. We all experience disappointment eventually. These are slogans from those who have emerged from the abyss of the valley of interruption, not of those in the valley. Grand philosophies and easy solutions don’t stick well when we are in the middle of interruption. They peel off painfully, reminding us of how useless they are and how much they hurt when someone approaches us with clichés full of solutions designed to cover our pain so as to protect others.
Unfortunately, there isn’t much tolerance for what happens to us when everything we once believed or knew becomes messy, inconsistent, unusual, and “not like us.” A life interruption is another way of saying we’re under construction. But this kind of construction isn’t clearly visible with orange signs and reflective vests cautioning others to slow down in awareness that transformation is happening. Whether we acknowledge it or not, interruption doesn’t wait for us to be ready nor does it allow us to anticipate when it comes to us.
Slow down. Don’t drive by, please. Be aware. We’re all under construction, never at the same time though. If not now, soon enough. Our interruptions may be different, but what they ask of us can be the source of our connection, reminding us that we’re not alone, and we don’t need to be.
’Tis the season of competition. This season, in particular, everyone is preoccupied with competition because it seemingly reveals character and helps us make choices about those things that are most important to us. But a preoccupation with competition also makes it difficult to engage in relationships of care. As we’re overwhelmed by the discordant chorus of competition in our public lives, let’s pause for a moment to recognize the undesired side effects of competition in our relationships of care. In relationships, the possible side effects of competition may include:
- Increased feelings of loneliness. “Know your competition,” we’re told. “Understand what makes them tick.” “Recognize their weaknesses.” Study them, not to understand them, not to empathize, not to draw them closer, but to beat them, overcome them, go beyond them, outshine them. When competition is the exclusive frame we can’t help but drag it into our relationships. When we do, the competitive orientation takes us away from others, making it almost impossible to step toward others with curiosity and interest and openness. Instead, competition requires we orient ourselves to others by looking for advantage. Relationships can’t sustain themselves through an ethic of advantage. Trust slips away and what we are left with is suspicion, hesitancy, and an overwhelming sense of loneliness even when we are in another’s company. An unwavering belief in competition can’t help but mark us in ways we hardly ever recognize at the moment. It lessens our sensitivity to others and narrows our tolerance for suffering—drawing us away from those closest to us by focusing our attention on how others are different from us and how we are different from the rest. When we approach relationships through this frame, we can’t help but see difference as a threat, rather than a means of understanding and as an opportunity for deep connection.
- Reduced self-value. We’re constantly told that competition brings out the best in us. It seemingly helps us rise to the occasion. And it might—on a playing field—when the metrics of evaluation are clearly measurable. But in our most sacred of relationships—when there is no scorecard and there are no clear rules—competition makes it so difficult for us to be anything but antagonistic. So we open our mouths and start talking. We tell and list and constantly remind others that we are different and special and distinct and not like everyone around us. Proving importance, unfortunately, doesn’t draw us closer—it repels others from us because it serves as a type of force field, requiring others to stand back in awe. Competitive accomplishments look and sound impressive. But these same accomplishments also give the impression that our accomplishments are the only parts of us that matter. Over time, we delude ourselves into believing that we, alone, are incomplete—under construction, awaiting some accomplishment that will make us whole. And so we spend so much of our time with others trying to get noticed, appreciated, and respected, relating to others not to connect, but to remind ourselves that we are special.
- Unending restlessness. Competition is an incredible motive for action. But this motive knows no rest. There is no end point. No moment of celebration that allows us to revel in what is—rather than what could be and what should be and what can be better the next time. Competition is the elusive elixir of the future—always requiring us to neglect what and who is in front of us for the mental satisfaction we believe we’ll experience when . . .
“When I get to where I really want to be . . .”
“When I get the respect I think we deserve . . .”
“When others finally appreciate me for what I’ve been doing . . .”
With competition, something is always guaranteed in the future. Next week. Next year. It’s just around the corner. The present, and the people who inhabit the present, however, are reduced to a mere means to eventual and promised satisfaction. When the people we interact become mere pawns, we can’t help but look through them, not make something with them. On the other hand, in relationships of care, we make our futures with one another—now, not later. Now, not later, is what makes possible relationships of openness and appreciation and satisfaction.
When I’m stuck in a cycle of competition, I know exactly where I stand. It’s apart from the world, even though those closest to me might be right in front of me. They are present, but I’m not. My mind is seeking respect and acclaim and appreciation miles away from the voices and needs and smiles and concerns of those I can hear and touch. If I allow myself to embrace collaboration and connection—not just competition—the dark shadows of my unmet needs are momentarily forgotten. Then, and only then, can I give myself permission to appreciate the fact that care and connection have no prerequisites for participation other than willingness. Relationships of care don’t ask who you are. They won’t ask you what you’ve accomplished or what you’ve achieved. Care doesn’t privilege our past or future—care is a radical commitment to the present that so few allow themselves to embrace even though deep connection can always remind us that what we need is right in front of us.
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.
Few of us like being the center of attention. As we stand apart from others, in front of others—our bodies begin taking us places we don’t often experience. Hands trembling, face blushing, heart racing, and voice crackling—we know every word and movement will be judged. Judgments about not just what we’re saying and what we look like to others—but judgments about who we are.
As someone who has taught countless people how to do this thing called public speaking, I understand the apprehension and dread associated with public speaking—but there is a growing fear in contemporary life that is as deep as our fear of public speaking. The only difference is that few people notice this fear—our fear of private speaking. Creating connections with another human being can be as daunting as public speaking because personal engagement . . .
- Requires us to open ourselves to another person. Interpersonal engagement means a willingness to interact beyond a quick smile or a generic hello. It means slowing down long enough to relate beyond the protection of clichés and comments about the weather. Most of us walk through these moments, perfecting the “I’m busy” look that disinvites interruption. It’s not that we’re not nice, we just convince ourselves that we don’t have time for our schedules to be co-opted by others. In private speaking, we don’t walk onto a stage—no, we walk into someone’s life. We don’t look up at speakers, we look across, up close and within reach of the person in front of us, reminding ourselves that we’re particularly vulnerable.
- Asks us to embrace difference. This means listening to someone who might not agree with us. Someone who might say something that challenges us. Someone who might represent something we are not comfortable with. This kind of willing connection with another requires us to go where the conversation and the interaction transports us, oftentimes beyond the safety of our habitual beliefs and expectations. This can be scary territory for those of us who always like to type in our destination into Google Maps before we depart. Public speaking allows people to walk in, speak, and walk away. Private engagement, on the other hand, necessitates a willingness to be changed, not simply by what is said or proclaimed, but by what we create with another person.
- Is remarkably inefficient. Interpersonal connection is completely inconvenient. It can’t be planned like a public speech. It happens when we least expect it, in the course of everyday life. Not when we carefully plan it into our schedules or send out a neat and tidy meeting request. For many of us, the anxiety of not knowing when, and under what conditions, connection might occur is overwhelming. Since connection can happen anywhere—at the grocery store, walking your dog, waiting for a doctor’s visit—we can’t prepare for it like we can for a formal speech. Connection is possible all the time, anywhere and everywhere. Only when we allow ourselves to follow the inefficiency of possibility can we know the joys of unanticipated connection with those we may have least expected it.
- Motivates us to care beyond ourselves. We can’t just listen. We can’t just nod our heads. Authentic connection means a willingness to share parts of ourselves that are called into action because of another. Opening ourselves to others means that we have to break the association that protecting ourselves always means concealment. Sometimes it may, but other times, hearing ourselves speak out loud to another allows us to see ourselves anew. Giving ourselves permission to create connection by acknowledging challenge and struggle requires just as much courage as walking up to a podium in front of thousands. Mixing our sorrows and joys and struggles and fears with others’ sorrows and joys means relinquishing our role as mere spectator and becoming a participant in the unfolding stages of our everyday lives.
- Invites us to risk proving ourselves wrong. Sometimes we convince ourselves that we are alone—that it’s us against the world. No one understands. No one can understand. No one cares. No one can care. People are different than they used to be. Life must be coarser. More inhumane. Genuinely engaging others means we might prove ourselves wrong. That person, yes, that person we’ve walked by too many times to count but have never approached, that person may remind us that the world isn’t as different as we thought. That person we believed couldn’t understand us and our situation might very well understand what we’re going through in ways we would never have been able to predict. Unlike public speaking, private engagement means we must do more than tell others what we already think and know. Authentic engagement means allowing the person in front of us to create themselves in ways that may contradict who we thought they were.
I applaud people who stand above us on the stage, but I am much more moved by those who engage me on the small but poignant stages of my life—the unplanned, non-strategic encounters that don’t necessarily call attention to themselves, but bring life and meaning to the now.
Character and leadership aren’t only demonstrated behind a podium, or in a debate. No, they are also revealed in moments we seek out with another when it’s least convenient. Deeply camouflaged within the recesses of everyday busyness, this kind of courage reaches out to us and allows us to reach out beyond ourselves . . .
Inevitably you’ve been asked the question: ‘What Do You Do?’ Some time ago, this seemed like an easy question to answer. You went somewhere every day to work, you engaged in some kind of behavior or activity every day, and then, each evening, you came home to something and someone awaiting your return. What you once did seemingly fit nicely into a very clear and simple sentence: ‘I am a ….’
But those days are gone. Now, the question of ‘What Do You Do?’ is much more complicated. As a caregiver, you don’t carry a briefcase to work. Now, your working days aren’t only spent somewhere else, away from the home. And you don’t come home from work to relax or recharge. No, now, your home life is as challenging and exhausting as anything done at work.
Work is now inside your home. Of course, you would never call caregiving work because you are caring for someone you love. And people who care aren’t supposed to place ‘care’ and ‘work’ next to one another in a sentence. But caregiving is a preoccupation that totally disrespects sane working hours, union rules, salary increases, benefits, vacation time, or any other perk you can think of.
Once you see yourself as a caregiver, the question of ‘What Do You Do?’ is totally deceptive. Saying, ‘I am a caregiver’ isn’t the whole truth. It just isn’t. Yes, you are a caregiver and you are also something else too. No one has the luxury of being only a caregiver. You are a caregiver and something else. For some of us, that something else is a formal job we go to every day that oftentimes takes us far away from who we want to care for. But we have to go regardless. For some of us, that something else is an informal set of obligations and duties that never stop piling up.
Simply put, as a caregiver, you never can be carefree about your caregiving—for every person you care for, there is also a complex and sometimes overwhelming series of obligations, worries, deadlines, challenges, and to-dos that never allows you to say, “I’m specializing in caregiving.” No one specializes in caregiving—we would love to in an ideal world, but we don’t live in an ideal world because we live in a world with bills, and contracts, and expectations, and mortgage payments, and so on and so on.
Some people are lucky. They can claim a clean, one-sentence response to the inevitable question: ‘What Do You Do?’ Not being able to easily answer this question is partly what makes your life so complicated and challenging. The real question people should ask caregivers like yourself isn’t ‘What Do You Do?’ but ‘What Do You NOT Do?’
“Hi, my name is . . . ” This is what we say to one another at the beginning of a new relationship. We believe introductions should only happen once because upon learning someone’s name, we seemingly know them now and forever.
Life transitions, however, require us to do something strange—re-introduce ourselves to those who already know us. Life experiences change not only us but also how we need those closest to us to know us. You may need to re-introduce yourself to those closest to you when:
- A life transition has changed you. Most of us recognize life transitions—marriage, divorce, retirement, loss, caregiving—but we’re not nearly as good at communicating how these experiences change us. It’s scary trying to explain to those we know how we have changed or how different we’ve become as a result of our life encounters. In a time of change, there is nothing more reassuring than knowing we can count on someone whom won’t change. Interestingly, this same expectation—“Don’t change, don’t allow life to change you”—is a standard we only hold for those we know the most. Life’s inevitable transitions require adaptation and reexamination. Memories allow us to find comfort in the nostalgia of who we were, but inviting others whom we are familiar with to be part of our change is essential for reinvigorating relational authenticity.
- A life experience has changed your beliefs and values. Most people think beliefs and values are something we possess and have always possessed. In reality, beliefs and values are always under construction, shaped by our bodies and experiences and relationships. How could an illness not require us to rethink our values? How could our grief for a loved one not inspire us to reprioritize what we view as most important? How could caring for someone we love not impact the way we see and act in the world? Our beliefs and values are fashioned in the image of life’s overwhelming forces. Grief, mourning, love, and care are deep winds of change requiring us to constantly re-align ourselves with our experiences. If life experiences sculpt our beliefs and values, we need not be expected to remain loyal to what we once believed. Instead, we should be prepared to help others better understand who we have become by pointing to the very experiences that shape us.
- When we feel trapped by others’ expectations of consistency. We know ourselves by how others’ respond to us. We can feel stifled, however, when others’ categories for us no longer fit. Consistency is a prerequisite for relational comfort. We like people who are consistently predictable. But feeling compelled to remain loyal to what others think we are (and should be) is an ongoing relational challenge. Most of the time, we drift away from these relationships because it’s so difficult to tell others how we are no longer who they think we are. Telling others whom we are not—“I’m not like that anymore” and “I don’t believe that anymore”—isn’t nearly as effective as inviting others to see additional parts of ourselves rather than having them make a choice between our old(er) and new(er) selves.
Re-introducing your new self to people you already know doesn’t need to be a formal event. It can be an ongoing process that happens in the micro-moments of everyday conversation and connection. A willingness to allow others to participate in your evolving sense of self will allow you to talk about your experiences and you, simultaneously:
“My experiences caring for my dad has helped me understand something I never knew before . . .”
“I used to believe that . . . but my son’s experiences at school have taught me . . .”
“I used to be so clear about that but after my sister’s death, I can’t help but think that . . .”
The comfort of long-standing friendships is a source of harmony in a world of disruption. To remain authentic to experiences that shape us, we must create bridges that allow change to be a source of connection with those willing to understand how our bodies, beliefs, and values are constantly under construction. Today, try re-introducing yourself to someone who already knows you, leading with those parts of yourself that will never change but also highlighting the parts of yourself that have been transformed in response to life’s callings.
If you’re anything like me, busyness is an unforgiving and deceptive filter. It often feels like such a struggle to navigate the whirlwind of everyday life. Too often, busyness becomes our default guide when trying to discern what needs to be done to make a difference.
Making a difference is an incredibly admirable goal, but it also can leave us feeling exhausted, incomplete, and confused. What if we reexamined and reprioritized our lives through a different lens that didn’t depend only on accomplishment? If being, rather than doing, was also valued . . .
- Whom we spend our time with would matter most. We get so enamored with the names of companies we have worked for, or the places we go to school, or where we’re from, that it’s easy to overlook the impact of the very people with whom we interact on a daily basis. Acknowledging the individuals who shape our everyday realities is often neglected because we’re told, in a variety of ways, people are irrelevant to our goals: “No one values my interactions with colleagues because they have nothing to do with my quarterly evaluation.” “No one cares about whom I care for and about. They just want to know if I get my work done.” But show me who you devote your physical presence, time, energy, and thoughts to, and I can show you the forces that shape you. The contours of our lives are not simply shaped by abstract goals, they are determined by the relationships we make and sustain in our everyday lives. We emerge everyday, not out of nothingness, but from the layers of care and attention of those that surround us.
- Presence would be the ultimate act of accomplishment. When we only talk about what we are doing to make a difference, we also set ourselves up to be perpetually disappointed . . . just wait, I’ll be valuable and noticed once the project is done . . . until my work of creation is completed . . . when the person I care for is better . . . once I finish my education. If we truly valued presence as a type of accomplishment, we wouldn’t delude ourselves into thinking that satisfaction will only come to us sometime in the future. Our presence with others is both process and product, complete unto itself and, at the same time, always shaping our futures. If presence was truly valued as sufficient and meaningful unto itself, we would drastically change the questions we ask one another at the end of a day. Instead of trying to assess the quality and value of our days by asking, “What did you do today?” we should be asking a much more profound question: “Who did you devote your time and attention to today?” Then, and only then, will we begin to understand that the meaning of our experiences can’t be separated from whom we spend our time with, around, and in response to.
- Deep connection with family, friends, and those nearest to us would be admired more than being adored by strangers. Fame has been confused with importance so much so that we sometimes mistakenly believe that public acknowledgment is synonymous with value. This delusion denies the importance of the deep but often overlooked connections we make with family members, neighbors, and colleagues. Our everyday interactions are always meaningful, even though we rarely acknowledge their impact. Fame compels us to believe that making a difference happens out there, beyond us, in a community far, far away. Fame is the intoxication of making a difference in the lives of those who do not know us. On the other hand, being a difference means cultivating deep connections with those who know us best. We live in an ongoing ecosystem of interactions that is continuously affected by our presence and care and attention. In time of others’ needs, it’s not only about what we do for others. Deep care is also about a willingness to be close enough to listen to those we care about. Too often, we forget that our presence alone is sometimes the only response needed. Yes, that’s right, our presence and attention can be a profound response to life’s greatest questions and needs.
Being a difference doesn’t only mean changing people’s lives, it means enhancing the quality of people’s lives, including our own. It requires us to appreciate and respond to the people we move by and around and with in the course of our daily lives. Everyday life doesn’t call us to be brilliant or unique or engage in incredible feats of heroism. Life, however, does require us to believe that our attention and presence and care always make an impact. Always.
Ever wonder why caregiving gets so little attention and informal caregivers like you are so often underappreciated?
Some of the more significant transitions in contemporary life—from getting into college to landing a job—are composed of life-long dreams, hopes, and preparation. Unfortunately, not all life experiences receive the appreciation they deserve since status follows public acknowledgement. Here’s why care and caregiving is so overlooked and undervalued…
- There are no standardized tests to determine who can become an informal caregiver. Our culture adores standardized tests because they provide an easy way to measure ourselves against others. Ideal candidates for care, however, don’t have to know any specific type of information but they do have to possess one undeniable trait: the ability to constantly adjust and adapt. Instead of responding to abstract questions, resilience and adaptability are the key markers for admission. It’s easy to compare IQ scores but nearly impossible to compare scores of resilience. People with high IQs feel compelled to tell you about their numbers, whereas resilience and care are always demonstrated. You don’t need to tell anyone you’re resilient, others around you just know.
- Instead of a cover letter showcasing the ways in which your intelligence, experience, and training mean you are one of a kind, caregiver cover letters would feature our insecurities. This type of letter would require an acknowledgment of our weaknesses. Our fears and frailties would play center stage. These parts of ourselves are prerequisites for care because they allow us to empathize with others. Any references to future outcomes would surely disqualify someone from the caregiver role. Caregivers don’t begin this journey out of self-interest. We don’t work in the realm of outcomes. We live in a world of doubt and hesitation where the future is about the next hour, not a strategic plan to climb the corporate ladder. The only ladders caregivers want to climb are to get us closer to someone we care about, they’re not designed to get us out of a situation.
- There are no fancy promotions or ceremonies marking your performance. Days, months, or even years may pass without anyone paying any special attention to your efforts. Few will recognize your years of service, effort, impact, performance, or capacity because there is no special hierarchy differentiating one caregiver from the next. And there aren’t communal commemorations because caregivers rarely associate with one another in person. Rarely, if ever, will you hear caregivers speak of themselves as a class or group. Caregivers don’t allow themselves the privilege and comfort of the “we” because there is no union of caregivers, simply a legion of “I’s” doing and being and serving.
- Parents and relatives and friends won’t be able to brag about your experiences. There are no “schools” of informal caregiving—no Harvard or Stanford to use as a guiding goal from which others can respect and admire. Others may speak highly of your role and your efforts, but it begins and ends there. There is nothing for outsiders to show their support of your value—no jersey to buy that binds you to another, no bumper sticker that highlights your efforts, no stock market of care that would legitimate your endeavors.
- The caregiving role doesn’t mean you are heading to an exotic location for your hero’s quest. The excitement and mystery of heading off into the world isn’t part of the caregiver role. Care isn’t found far away. It’s up close and personal. Inspiration doesn’t come from the exotic. It comes about because of shared relational history. There are no fancy orientation sessions preparing you for what is to come and how to respond. We don’t have the luxury of getting ourselves (and others) ready for what is about to come–“In three months, I’m going to be a caregiver.” The caregiving role can’t be planned. We respond to it before we even know we’re in it. You don’t step into the caregiving role, it steps into you.
- There are no alumni “homecoming” parties. There are caregivers next door, down the street, down the hall, and in the next cubicle. But their efforts often go silent and unnoticed because there are no parties or reunions to mark them and their role. Caregivers often think their role is so unique that they have little in common with those in the same situation. Where would they return to? What would they say to their children about how the experience of care changed them when care is not bound to any one place? Care isn’t something that happened to us during a certain year, it’s something we still live with. For caregivers, the where is always secondary to the who because it’s nearly impossible to explain how you were changed when care changes every part of how you see yourself.
One day, perhaps soon—caregivers will begin to be valued because it’s a role that will come to us all at some point in our lives. It is the one transition in life we all experience—just not at the same time. I dream of the time when our culture will boast of care and caregivers with the same pride it speaks of someone who has made it into a prestigious school or works for a highly-acclaimed employer. Then, and only then, will we begin to know our care experiences have achieved the status they deserve.
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.
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.