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 […]read more...
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.
At some point, everyone utters the phrase—I’m not where I thought I’d be—privately to themselves. Some of us, however, are more vulnerable than others, especially when our expectations are frustrated by challenges in life that we never thought, expected, or planned.
Unfortunately, our questions can often be mistaken for accusations because we repeat them to ourselves so many times that we can’t help but think they are true. So the next time you get momentarily stuck in the quicksand of—I’m not where I thought I’d be—you might want to keep in mind the following:
- Where we are now is never where we thought we’d be—ever! When things are going well, we don’t reflect. We keep moving, and going, and pushing. Reflection and contemplation happen when our lives become interrupted, when what we thought was going to occur—doesn’t, or when what we never planned to happen—happens.
- The past is never a good predictor of our present. The trajectory of our expectations is always the same—they are straight and unchanging lines defined by their end points, not by process. Our dreams don’t account for the need to turn, swerve, speed up, slow down, pause, turn around, let alone change directions. But dreams of the future are powerful because they are seemingly so clearly defined, real in their gravitational pull toward some desired destination. Unfortunately, we can easily become lost and disoriented when what we thought was going to happen doesn’t correspond or make sense given our everyday challenges.
- For all of us whose lives have at some point been interrupted, there is one undeniable fact: we aren’t who we used to be. Our past dreams often delude us into thinking they are timeless and timely when they are not. Our dreams almost never account for the fragility of life, love, care, illness, disappointment, and rejection. Too often, our dreams can’t keep up with who we’ve become. Dreams are like milk, they go sour and make us sick when they are past their due date, though we rarely throw out our dreams when they expire amidst new realities, changes, opportunities, and insights.
- Dreams can be incredibly deceptive because they often omit the messiness and tensions and responsibilities that characterize our everyday relationships. Most people’s dreams aren’t about becoming closer to another human being when it’s not easy. Most people don’t dream of loving someone when it’s not easy. Who dreams of what life will be like when we love someone who becomes ill? Who dreams of managing the challenges of work and life and children? Who dreams of being depressed? Who dreams of struggle? Who dreams of bodily interruptions? But we’re not most people anymore, are we?
When you torment yourself with feelings of failure and disappointment because you’re not where you thought you’d be, begin to edit your past expectations. Change the script of your dreams made years ago in a galaxy unconnected from the world you inhabit now. Start with where you are, here and now. Use your current situation as a starting point, not as an ending point. You are changing, so should your dreams. The next time you question yourself because you’re not where you thought you’d be, remind yourself that the where may not be nearly as important as the person you are becoming.
Each year, I have the rare privilege of having a front row seat to one of the few respected rituals in contemporary life: college graduation. It’s beyond unfortunate, however, that we don’t ritualize life’s other markers beyond graduation.
In honor of life’s often overlooked but life-altering transitions, here’s what a ceremony for caregivers might look like . . .
What Are We Honoring?
Our ceremony will honor our willingness to respond to life roles that we were drafted into—unexpectedly. That’s right, the roles that called us to care that didn’t occur within our expected time frames and didn’t conform to our plans. These care roles weren’t the roles that we spent our lives sculpting our resumes to attain. Explaining care doesn’t go over well at parties—trust me, I’ve tried—because people don’t know how to respond. Care isn’t a position. It’s not a company. There are no promotions. It’s not a bucket list item. These life roles came at us, whether we were ready or not.
Honoring care authentically means none of us would individually walk across a stage for a handshake and picture. For our ceremony, that would be deceptive and impossible—we’d never fit everyone in the camera frame. Invisible life transitions like caregiving are always social—our responsibilities and connections highlight how we are rooted in and grounded with others. Our ceremony will call attention to the fact that our lives aren’t defined by other people’s beliefs about ambition. No, our ambition isn’t neatly packaged. It’s private and public, familial and stigmatizing, life-altering and life-affirming. This ceremony will honor our willingness to walk not simply toward our goals, but also our willingness to open doors into people’s lives when few others would.
Who Would Speak?
Commencement speakers are the celebrities of college graduations. Carefully chosen and vetted, a person speaks for the graduating class. An inspiring figure. A public celebrity we’ve seen on television. A politician or sports figure that comes from afar to tell us about the art of living, armed with sweeping answers and clichés to rid of us of our uncertainty and tell us there is nothing really to fear because the world beyond is for the taking.
For our ceremony, we’d do things much differently. Importing a national figure to talk about our everyday, lived experiences wouldn’t make sense to us. When someone tells us they have the “answers”, we tune out. We don’t have the energy or patience for such speeches. We’re not even looking for answers and we’re not keen on listening to others who charismatically clean up and organize our lives in fifteen minutes or less before heading out of town. We’re used to messy—clean clichés wouldn’t work.
Instead, perhaps all of us in attendance would write out a line or two about our experiences and challenges, or draw a picture or create a tune, integrating our creations into a babble of voices and representations. It would be noisy no doubt, but whatever is created would be connected to others’ creations. We would be both creators and audience—our words and creations and images and sounds and presence would be our rousing anthem. Not a Katy Perry kind of anthem though. Unlike college graduates, we’re not waiting to be inspired. We know too well the expiration date of inspiration. Our experiences tell us that inspiration without love and care and a commitment to others rings hollow. I’m talking about an anthem of our own making that allows us to pause time long enough to mark our care transitions—however confusing—while surrounded by others.
What Would Be Said?
This is so very complicated because we know graduation speeches always include a brief shout out to the past and an unending preoccupation with what is coming, where people are going, and who they hope to become.
Our ceremony couldn’t help but be drastically different. We don’t think like most college graduates—we don’t see ourselves as unbounded, floating in the wind of life. Our roles connect us to those we love and care for. Sometimes we feel our connections constrain us but we also know they are the life fulfilling necessities we wouldn’t want to live without. We aren’t free agents. We are social agents. That’s what will be said. And shared. And felt. And celebrated.
Most people dream of where they will visit and what sights they might see and experience after graduation. Grief. Loss. Anger. Loneliness. Silence. These experiences are typically not invited to graduation speeches. But these are the places we have visited and these are the places that have visited us. They have compelled us to expose parts of ourselves we didn’t want others to notice. They’ve made us vulnerable, inspiring us to endless self-questioning and doubt. They aren’t glamorous destinations but they are necessary parts of our journey that shouldn’t be omitted because leaving them out would mean erasing vital parts of our experiences. Let others edit their words of wisdom to only include inauthentic half-truths. Not for our ceremony though.
What About Moving Our Tassel?
Today, during our celebration, we don’t need to mark our care transition with the ritual placement of our tassels because we are already marked. We don’t have to tell people we are important by reminding them of the awesomeness of our yet-to-be-lived future. We don’t have to strategically self-present like college graduates and tell the world what we think they want to hear. Today, we are as we are. We are what it looks like in the midst of disorientation and resilience. We are college students’ future selves. The only difference is that for the first time, we can see and appreciate who is around us. We are no longer consumed with looking through people to find a glimpse of the future. We can appreciate those around us—that’s right, you—for who we are now. Yes, this is where we need to be, here—complicated. Tangled. Connected. Grounded. Not out there beyond—but right here. Yes, right here. Not valuable for who we are going to be. Valuable for who we are and what we are doing now.
Excuse me, but I think I’m going to stay here a bit longer. Unlike a college graduation, I don’t have a party to attend. Nothing to run to. Not anymore. Do you notice what’s going on? People are still arriving at our ceremony. The seats around us are constantly being filled because there are no onlookers—no spectators or visitors—just participants engaged in this thing called living. Stay with me here a bit longer, would you? I want to close my eyes and feel the presence of acknowledgment and shared struggle. Grab a seat, there’s one right next to me.
When most people think of sickness, they think of a person who is sick or has an illness, as if the sickness is something that one individual possesses. Caregivers can’t help but understand sickness differently than most others. While most people think sickness is only about what happens to one person’s body, our repeated exposure to the illness experience changes us as we are constantly reminded that . . .
We aren’t always in control. Only when we spend time with and near those who are sick, do we know that the body’s voice—aches, pains, discomfort, suffering—can’t be ignored. Sickness reminds us that it works on its own schedule—not ours. Our calendars are full of appointments and meetings and to-do lists that we set up when we could plan out our futures based on availability. But our loved one’s illness doesn’t care what we had planned for tomorrow. It can’t be postponed until we can mesh our calendars.
Whether brief or permanent, near-illness experiences require us to look in the mirror and see ourselves differently than we might have ever looked at our ourselves before. Spending time near sickness means never being able to forget that there are forces at play beyond our will and desires. Care, up close, prevents us from believing that we can—and should—do whatever we want, whenever we want.
We are constantly humbled because we know that sickness eventually finds us all—regardless of our size, strength, income, or background. Humility is not a space most others inhabit on a daily basis but for those of us who spend time near illness, we can’t help but notice what most others overlook. Near illness, life appears fragile. We see so clearly what can go wrong and find it hard to let go of this truth. Appointments can be missed. Dreams can be interrupted. Schedules turned upside down. Habits broken.
When near the sights and sounds of our loved one’s discomfort, we are affected too—often finding ourselves in a state of perpetual unease.
We don’t feel like reading. We don’t feel like watching television. We aren’t comfortable with the lights on. We aren’t satisfied when the lights are off. We don’t feel like talking. We can’t sleep at night. We are tired during the day. In a world that’s always on, being near illness can make us feel off, refocusing our attention to the functioning of the limits of the body in ways that inspire respect, fear, and reverence.
We need others. When we are near healthy bodies, we want an audience to display ourselves, our talents, to remind others—and ourselves—that we are important, worthwhile, funny, and desirable.
When we are near illness, something drastic and disruptive occurs. We don’t want others to remind us that we are worthy, we need others to remind us that we are not alone because the suffering of those we care for has the incredible capacity to exaggerate our isolation.
We are the witnesses that hear and comfort our loved ones when they can’t present themselves in ways that make others feel more comfortable. As witnesses to physical authenticity—the kind of authenticity no one talks about—we need to know we are not alone. We comfort our loved ones with our presence by assuring them that our care exists without conditions. We reassure them that they can close their eyes and know they will wake up with us near. But we need reassurance too because our witnessing means that we are often left unprotected from our own doubts and fears.
Sickness and care are so interwoven that to untangle one from the other would render both meaningless. Sickness without care is unbearable. Care without vulnerability has no purpose. Too often, we think of people as sick or well, caregiver or cared for—exaggerating the differences between our ill loved ones and us. We care for people who are being remade by their illness and in the process, we are changed. Illness can’t be quarantined to bodies alone, it becomes a part of our relationship as care reminds us of what most others too quickly forget: we can’t help but see ourselves in those we care for just as our loved ones can’t help see themselves in us. For those of us who have had near-illness experiences, we know that illness can’t ever be understood by biology alone—it’s also a relational experience that constantly reminds us of truths we can never forget—even if we want to.
Throughout our lives, we are sustained by beliefs that are left unquestioned. They simply are. These taken-for-granted beliefs can’t help but become mistaken for enduring truths that we use to guide our priorities and relationships and choices . . .
Push through, work harder, and do more, because it will lead to something better.
Follow opportunities wherever they may be and whomever they may take you away from.
Make yourself valuable by specializing.
Let passion guide you.
Possibilities are endless.
There is always tomorrow.
Be available to others, all the time.
I can’t now—I have a meeting.
Caring for someone changes us. It isn’t just something we give. It takes something from us too—our taken for granted beliefs. They are stolen from us but no one seems to notice that they are gone. We can’t help but become disoriented as the beliefs that had once guided us now appear jagged and dangerous, requiring us to question and even walk away from what we used to hold to be true . . .
Push through, work harder, and do more, because it will lead to something better—I’m done pushing though today if that means just crossing something off my list. Caring is harder than anything I’ve ever done. Caring more won’t make my loved one better even though I wish it would.
Always follow leads and opportunities—why do leads and opportunities always have to be far away? Why can’t this relationship be my opportunity? And lead to what? I’m satisfied with what’s before me.
Specialize—how is that even possible? My specialty has a name and a face. And he doesn’t only need part of me, he needs all of me.
Let passion guide me—why is passion always about work? Isn’t caring for someone I love a type of passion, even if it doesn’t impress others?
Possibilities are endless—no they’re not. I recognize my limitations and I know the person in front of me isn’t a possibility. She’s real.
There is always tomorrow—my experiences tell me otherwise. Now is what matters most. Now is where I want to be. Today is the only thing I know to be true.
Be available to others, all the time —I can’t anymore. I don’t want to be ‘on’ for everyone anymore because that means I can’t be present for the people who need me the most. The people I need most.
I can’t now, I have a meeting—I’m going to be here for you now. This—you—are important. Nothing else is more important than you.
We change our beliefs when what we hold to be true no longer fits what we are experiencing. The problem is that our care transformation isn’t noticeable. It isn’t like a before and after reality television show where you can easily see the transformation by comparing what we look like now to what we used to look like. There are no big reveal moments when it comes to belief transformations. No, internal makeovers are searing and silent. They reveal themselves slowly, and tentatively, not on stage, but in everyday conversations that are often met with disbelief rather than adoration.
“Are you okay? Seriously, you’re not acting like yourself.”
Care, deep care for another, can’t help but transform us. Care inevitably infiltrates every part of us from our eyesight to our mindset. It sets itself upon us in ways that begins to remake what we once took for granted and believed to be true. We didn’t seek to transform our lives—transformation came to us because we dared to care.
When we are physically healthy, strangers are to be kept at a distance. That’s why we lock our doors and are wary of people we don’t know—“Never, ever open the door to a stranger!” When illness enters our lives and the lives of those we love, however, something strange happens.
The people we know most (or the people we thought we knew) find it difficult to enter our lives . . .
“It’s too hard for me to see him this way. He used to be so lucid. And now, he just sleeps.”
“What would I say? What can I say?”
“I love her so much. I can’t handle it. I can’t see her that way.”
As those we know find it increasingly difficult to visit when the prospect of death is more than an abstraction, strangers willingly walk through our doors. Based on my own experiences as a hospice volunteer and my academic research on the hospice experience, here are 3 reasons why hospice volunteers, people whom you have never met before, can provide care that many others simply can’t:
(1) Acceptance—Hospice volunteers willingly walk into our lives when some friends, acquaintances, and neighbors walk out of it. Why? Hospice volunteers didn’t know our loved ones before they were ill. Their role always begins with the onset of illness. They walk into our homes and our lives and see our loved ones for who they are—not who they used to be. Sometimes, those who know our loved ones best can’t get beyond comparing and contrasting who they were with who they are now. In the process, grief and shattered expectations can prevent them from seeing what is before them. Hospice volunteers openly accept the present. This pure acceptance of what is—rather than a concern over what was, what isn’t, what could have been, what should have been—means they orient themselves to our loved ones in drastically different ways than most others. They bring a radical kind of attention to our lives—attention preoccupied by what is rather than what isn’t.
(2) Guilt and Agenda Free Care—Hospice volunteers don’t bring guilt with them. They don’t know our past. They don’t have broken promises and don’t bring with them past grievances that can sometimes get in the way of the time they spend with you. Sometimes, our closest family and friends disinvite themselves from the illness experience because they believe they’ve let us down. They said they would call over the weekend—but didn’t. Guilt then becomes a barrier between them and us. “It’s too late to call now. I should have called. What would I say now.” Hospice volunteers don’t carry with them the baggage of interpersonal and familial obligation. Their role protects them from having to explain, rationalize or justify. They have no agendas. No desire to persuade you to do or be or say anything other than what you choose. Sometimes, for family and friends, guilt and unresolved issues get in the way of care visits—turning moments of peace into storms of internal doubt, regret, and confusion.
(3) The Freedom to Be— It’s hard for us to separate words from care. If you care, you speak. If someone is in your presence, you must be a good host, and entertain them with words and conversation. For others, the premium on words seems to grow in importance as friends and family take the time, energy, and money to visit. When everyone is preoccupied with avoiding saying the wrong thing or being a good host—authenticity retreats. Awkwardness enters and dominates. Silence becomes a sign of a relationship gone wrong rather than a sign of comfort. Unlike family and friends, hospice volunteers know that what is said isn’t nearly as important as physical presence. Silence is not a sign of a failed connection, but a vital part of the vocabulary of care and comfort and assurance. You and your loved one don’t owe hospice volunteers your words. The permission to remain quiet in another’s company, knowing you are not alone, comforted by the peace of another, unburdened by the need to say anything at all, is a gift few others can provide.
The hospice affect is hard to explain to outsiders. Sometimes, only in the company of strangers, can we feel free to be open and honest. Sometimes, freedom means not feeling the need to protect or withhold or edit ourselves for fear of how we will be (mis)interpreted. Sometimes, opening the door to trained hospice volunteers willing and able to enter our homes when it feels like everyone else has exited long ago, reminds us that we are still worthy of attention and connection. Something strangely beautiful can happen when we greet others who see us in the midst of living while dying. Thank you to those who knock on our doors when life is still being lived.