Photo by Raph Howald on Raph Howald

Published by The Mighty, 7/17/20.

“It feels like the end of the world.”

I’ve heard a lot of people say that in recent months, and I can totally see where they’re coming from. We were already struggling with COVID-19 when a brutal, public murder by a police officer sent our nation into a long-simmering tailspin of civil unrest. The violent streets, ravaged store shelves, stockpiling and panic we’ve witnessed in just the past few weeks remind me of every apocalyptic movie I’ve ever seen—the ones with zombies, monsters, meteor strikes, alien invasions and, yes, global pandemics. Even the acts of selfless heroism look familiar. It feels like the end of the world.

As a child, I heard a lot about the end of the world. Between my family’s religion and my mother’s untreated depression, a narrative grew up, and what it meant for me was that I would not. I was taught to believe that the world would end before I reached adulthood, and I did believe it, with all my aching young heart. I held my breath, grieved my lost future and waited. But the earth kept turning, the sun kept rising. I finished my education, married my best friend . . . and still the earth turned.

Along the way, I began to question the idea of the end of the world. Looking around, it seemed that every day was the end of the world for someone. At every breath of mine, there was somebody else who was taking their last; someone whose life and earthly possibilities were literally at an end. At the same time—at any given time—there were great groups of people who were watching war, disease, famine, storms, despots or hatred devour all they held dear. And this, I learned, had always been the case—from the eruption of Pompeii, to the Black Plague, the Great Chinese Famine, the Boxing Day tsunami, the Holocaust, the Rwandan genocide. All these disasters and so many more, both man-made and natural, have stolen human lives in a chillingly casual manner, destroying individuals, families, entire civilizations.

And I discovered, as well, that not all catastrophes ended in death. I saw individuals around me facing challenges that made me on-my-knees grateful that I wasn’t in their shoes—a tough diagnosis, a divorce, the death of a loved one, the loss of a career, the betrayal of a friend, the dissolution of a long-held dream, the destruction of one’s faith. Such suffering is more personal than a storm or civil war, but for the individual involved, it’s no less keen, no less frightening. I know, for I faced my own such disaster some seven years back, when a fungal pneumonia derailed my health. Friends prayed for me. Doctors promised full recovery. But my health didn’t return. My hopes were pushed back, pushed back, pushed back—then demolished. It felt like the end of the world.

But it wasn’t. The earth kept turning, the sun kept rising. And I had a thought. Maybe this is just life—not the end of it, but the reality of it. Maybe this dance between hope and despair, light and dark, birth and death, joy and sorrow—this inability of ours to control the forces around us—is not the end of the world, but simply “the world.”

My husband had a similar idea a few days ago, when he called from the small business he’s been struggling to keep afloat through the pandemic.

“I’ve been thinking of my grandmother,” he said, “remembering all she experienced in her life, and how it must’ve looked to her.”

I saw what he meant. My husband’s grandmother was born in 1904, and reached her teens during WWI. When she was 14, she lost her mother to the Spanish flu pandemic, and when she was in her 20s, a car accident left her disabled. While the Great Depression was clawing at the door, she was caring for a child with a severe brain injury. She watched her country struggle through WWII, the Cold War, the Civil Rights Movement, the Vietnam War, the assassination of a one president, the resignation of another . . .

So much trouble. So many “end of the world” moments. So much for the good old days.

While I outgrew my belief in the end of the world, my mother never did. When I was 24, and overdue with my first baby, she took matters into her own hands. The night after her death, I couldn’t sleep. I waited until my husband was snoring beside me, then I crept into our silent living room, tucked my bulging belly into our hand-me-down recliner, took up my embroidery and sewed through my tears. It felt like the end of the world.

Two nights later I went into labor, and early the following morning a nurse laid my daughter in my arms. I held tight to her during my mother’s funeral. I held tight to her during the grief-filled weeks and months that followed. I cared for her, lost sleep over her and found distraction in my love of her. And the earth kept turning, the sun kept rising.

That was 33 years ago. And here we are today, suffering through yet another ferociously uncertain time. It’s hard not to feel discouraged, depressed, apprehensive, afraid . . .

The other day, after months of social distancing, my husband and I had our granddaughters over for dinner and a swim. Ivy, 5, and Clara, 3, had been coming over weekly before the pandemic, but we’d rarely seen them since the quarantine, and only through window panes. Now they ran with the dogs through our house, enlivened dinner with their chatter and played their hearts out in our pool.

After they’d left, I was putting my weary bones to bed when my husband spoke to me from the other room.

“I had a blast with Ivy and Clara,” he called. And after a moment, he added, “I guess this isn’t the end of the world.”

Do you hear that, Mom? The world hasn’t ended, and it won’t this time, either. It’s changing again, is all.

Photo by Earl Wilcox on Unsplash

Published by The Mighty, 12/8/20.

When, after more than five years with a chronic, debilitating disease, I was finally able to see a specialist, it was everything I’d dreamt it could be. My new physician spent more than two hours dissecting my illness, from onset to present. She looked at my life as a whole, explored possible genetic, environmental and lifestyle factors, gave me answers regarding some of my more disturbing symptoms, and explained to me what is known about the disease. She gave me a listening ear, answers — hope.

Bolstered with all this, I returned home — and it wasn’t 12 hours later that I woke in the night with a feeling of dread, and a message flashing in my mind: “My body is a dud.”

The wording of the message was telling. When I was a child, we’d set off fireworks every Fourth of July. Sometimes we’d light one, scurry back and wait… and wait and wait, until someone shouted, “It’s a dud!” Something had gone wrong somewhere. There would be no flash, no bang, no sensory reward. We would abandon the faulty explosive and move on to another…

My body is a dud.

I’ve been sick for many years, but not one of my doctors — the number topped a dozen a while back — has ever understood much about my condition. I’ve received blank stares, empathetic nods, but very little interest or curiosity, and no information. I’ve learned to live a reduced life. I’ve learned to expect less fun and more suffering. I’ve gritted my teeth. I’ve sobbed, bargained, raged — I’ve grown emotionally limp…

But until I visited that specialist, I’d never once listened to someone tell me that I had a real, actual disease.

The specialist performed a test on me. First, she had me lie down for several minutes, then she took my pulse and blood pressure. Afterward, she had me stand and lean on the wall, while she continued to record my pulse and blood pressure. And there it was, in the wildly fluctuating results — the reason I can no longer stand in a line without discomfort, why I have to tilt my seat back when I drive, or lean on a table when I sit down. It’s not just in my head. That’s wonderful…

Except that it’s not. My body isn’t working right. My body is a dud.

My new specialist was easy to talk to, and I shared with her how I’d never known there were illnesses like this — that I’d known to fear some diseases, but I’d never heard of one that took so much without killing. And I hadn’t understood that my wildly busy life might be undermining my health. I was raised in a society that says that pushing oneself is good, that there can be no bad results from working too hard…

…and my specialist interrupted me to say, “Lots of people overdo it. Not all of them end up like you.”

My body is a dud.

The other night, with those words ringing in my mind, I thought about all the others who’ve felt the way I did, who’ve been told that they have cancer, diabetes, MS, ALS… And the many others with congenital defects, epilepsy, spina bifida, autism, cystic fibrosis… So many diseases. So many of us.

I love my body. I always have. It’s small, compact, muscular — not exactly beautiful, but good enough for me and for my loved ones. When I was young, I reveled in its ability to run fast, play hard, learn musical instruments, do pull-ups. When I was older, I enjoyed its capacity for toiling diligently, hiking hills, walking miles, dancing wildly. My body nurtured and gave birth to three more bodies. My body helped to feed and clothe those little bodies. It cared for them when they were ill, and even put them through college.

My body is a dud?

My body isn’t perfect. My body had a time bomb hiding in its midst. The bomb has gone off, alas.

I love my body.

Photo by Matthew Henry on Unsplash

Published by The Mighty, 5/23/21.

However I mark the onset of my illness, I’m more than five years in. Whether I start the clock in the spring, when I was struck with a thunderbolt fever, or the following summer, when I found myself growing increasingly exhausted or in the fall, when chest pains finally sent me to the hospital — I’m five years past it all.

By winter, ill health had forced me out of the family business, and since then, most of my previous goals have become unattainable. At an age when I’d hoped to be enjoying my empty nest, I’m mostly confined to it. No hikes in the desert, no travel to far-flung destinations, no earning a living or saving for retirement. Activities are planned around my need for rest, and each exertion must be carefully weighed.

Still, I’ve learned a lot — so much. Some of what I’ve discovered has been disturbing. Much of it has been enlightening. And a little of it has even been inspiring.

Here is what I know:

1. If you crave attention, being sick isn’t the way to go.

There seems to be a generally held belief — including among some health care professionals — that patients who “refuse to get better” might be seeking attention. As one of those patients, I find the idea fairly ridiculous. The truth is, chronic disease is a ticket to isolation, not attention.

I learned early on I could judge how people would respond to my illness by what sort of friend they’d been before. Those who’d loved me, still do. They don’t question my account of my symptoms, and they continue to support me however they can. Work friends and casual friends mostly fell by the wayside, as they would have if I’d changed jobs or moved away — which one could argue, I did. And those who were, ahem, never really on my side? Let’s just say the news of my illness didn’t bring them to my door with a casserole and flowers.

By now, my illness has lost its novelty even among those who care for me most. Newer concerns have taken its place, and although I can always count on a sympathetic ear or a shoulder to cry on, my disease is no longer the main topic of discussion. I’m OK with that — it’s as it should be. At the same time, I can say with great sincerity neither I nor my ill friends are drowning in attention. Chronic illness is a solitary gig. Most of the struggling is done alone.

2. There isn’t a cure for every disease, but many believe there is.

I was guilty of thinking this way myself before I grew ill. I guess with all the talk about fundraisers and studies and breakthroughs, I assumed in this modern age, all diseases were, under control? If we couldn’t actually cure a disease, we certainly had ways of diagnosing it, slowing it, treating it. And those cancers and genetic diseases we couldn’t stop — at least we understood them, right?

Wrong. My own disease, myalgic encephalomyelitis (ME/CFS), affects millions around the world, yet there is no cure, no approved treatment and the cause remains a mystery. Who knew? I certainly didn’t. I had no idea at the age of 50 I could suddenly — almost overnight — contract an ailment that would disrupt every aspect of my life, and that would take nearly five years to find a physician who could give me any real information about my disease.

We are in the dark ages when it comes to many conditions, ME/CFS included. When we fail to acknowledge the fact, we heap yet more pain on those who have fallen into the black hole of medical ignorance.

3. What doesn’t kill you doesn’t always make you stronger.

We live in a world where we’re encouraged to chase dreams and climb mountains — to challenge ourselves and our limits. If anyone was simultaneously screaming we should listen to our bodies, I, for one, didn’t hear them. One of my main regrets today is I didn’t take better care of my body when I had the chance, that I didn’t slow down when the warning lights began flashing. And I’ve heard others with my disease express the same remorse. We believed we could do it all.

The spring I grew ill, I was working full-time at the family business, writing part-time for a newspaper, working on a novel, and managing a household. I look back now and I’m appalled at my lack of self-care. When I came down with the fever that began this journey, I took one day off work. Ten days later, with the fever still simmering, I finally went to the doctor and was diagnosed with pneumonia. On my way home, I stopped to buy a vacuum cleaner for our business. I was cavalier with my health, and I will pay for it for the rest of my life.

Please, my hardworking, selfless, tough-as-nails friends, take care of yourselves. Learn your limits, and love yourself the way you love others.

4. I’m one of millions.

Until I grew ill, I had no idea how many people are affected by chronic illness. Behind a curtain of pain live vast numbers of bed-bound, homebound and nearly homebound individuals struggling to make the most of lives that have become both utterly challenging and alarmingly invisible. Nobody asks for unending sickness. Nobody deserves it. Yet, in my online travels, I’ve encountered many who’ve spent an incredible 30 or 40-plus years with my own disease — decades during which they’ve survived disbelief, illness-induced poverty, societal indifference and even abandonment.

The courage of these warriors amazes me, in part because they did it without the internet. Yes, social media has its drawbacks, but I have no patience for purists who insist it’s ruining the world, because I know that, whatever its problems, it’s also saving lives. The chronically ill and disabled depend on the internet for information, society and even friendship. Having an online presence gives us a voice, power in numbers and a way to make a difference. Isolation can kill. Thank goodness for social media.

5. Grief is real, but it has a shelf life.

I’m not sure how far into my disease I was when I first Googled “grief and chronic illness.” I do know that, even then, I thought I was being premature. Sure, I’d been sick for a while, but I’d get better. This wasn’t a permanent situation. I was just experiencing a learning moment? A health glitch? Other, very unfortunate people had chronic illnesses. Not me.

That’s denial, folks — one of the five stages of grief, according to the Kübler-Ross model. The others are anger, bargaining, depression and acceptance, and I’ve spent pretty much every minute of the last five years getting to know them all. For me, grief comes in waves. I can feel like I’ve conquered it in the morning, and by evening know I’m far from finished. And the trickle of information hasn’t helped. It’s not as if I lost a limb — quick and dirty. My first few years were filled with misdiagnoses and confusion. There was room to hope because I had no real answers. I could postpone adjustment.

Five years in, I can finally see myself pushing past my grief — really. I’m beginning to look ahead again, to make plans that incorporate my altered reality. I see my disease as a giant boulder in the middle of my house. I’ve tried moving it, chiseling it smaller, even throwing a blanket over it. Now, I’m learning to live in the space that’s left to me — to dance in the corners, and get all I can out of the area that remains.

In his excellent book, “Man’s Search for Meaning,” Holocaust survivor Viktor Frankl writes: “When we are no longer able to change a situation — just think of an incurable disease such as an inoperable cancer — we are challenged to change ourselves.”

It’s been five years, and I’m happy to report, though my sickness hasn’t changed, I have. And in that fact alone, there’s hope.

Photo by Jackson Simmer on UnSplash

Published by P.S. I Love You on Medium.com, 4/17/21.

The one who wronged me is sorry. Now what?

So, I received the apology. After more than five years, the crisp envelope showed up in my mailbox with the words “I am deeply, deeply sorry” penned on the back flap. Inside was a card with more of the same. Brief but comprehensive, my family member’s apology included no gaslighting, no misplaced blame, no attempt to wriggle free or pretend that what he’d done hadn’t been both destructive and uncalled-for.

How much of our lives do we spend wishing for an apology like that? I was gobsmacked.

And gratified. My first response was — not joy. Certainly not triumph. Vindication, perhaps? I had sat silently by since our dust-up, dealing with the ugliness of what had gone down, then contending with the stampede of rumors that had followed it — allegations spread in part by the one who had wronged me, as he sought outside support for his cause. So, yes, receiving his unqualified apology felt like a measure of justice — an admission that I hadn’t earned the censure that had been raining down on me. It felt good — nice and warm.

I knew right away that I’d be answering the apology with an acceptance of some sort, and my first impulse was generous — so generous. I wanted to put my family member at ease. I wanted to assure him that his brave effort hadn’t been wasted. I wanted to prove that I wasn’t the unforgiving, unbalanced person he’d made me out to be to our relations, and I wanted to be friends again. I saw his apology as a second chance, not just for him, but for myself, and I was eager to grasp it.

Then, as I was preparing to pardon my family member — to forgive him the way my Sunday School teachers had taught me to do — I hit a snag.

Nothing had really changed. I’d had an apology, and it had eased the sting of my wounds, but it hadn’t actually taken them away. For one thing, my relationship with my extended family was tattered. Several had seemed eager to believe my family member’s bad reports, and more than once a smiling group photo had popped up on my Facebook feed, notifying me that a reunion had taken place, and my presence had not been required. I suspected that even those relatives who’d remained on the sidelines harbored doubts about me — my sanity, my kindness. There’s no smoke without fire, right? These are people whom I rarely see, and they’ve had little chance to judge my character for themselves, and even less reason to take the trouble.

And what about my relationship with the family member who’d apologized? Could we ever really be close again? In his anger, he’d done his best to destroy me. Had I been younger, more susceptible — less loved by those around me — I might not have survived his attacks. He had apologized, and while I found it easy enough to pardon his past behavior, I feared I’d find it much harder to trust him going forward. If I displeased him again, would he behave in the same way? Would I have to spend weeks or months of my too-limited energy dealing with another falling-out? He may have a hot temper to contend with, but I have my own deeply ingrained traits. I find it difficult to trust those who have hurt me — to put my hand on the stove again. And when someone convinces me that I mean nothing to them, I lose that ability entirely.

The hard truth is, I’m not who I was five years ago. A layer of innocence — perhaps the last I possessed — was scraped painfully away by the very encounter that my family member now regrets. Since that time, I’ve come to expect less of my fellow humans. I no longer assume that others will like me, and what’s more (worse?), I often can’t manage to care. I lack the energy to chase down love — to take part in the sort of emotional keep-away games that once kept me so frantic and unhappy — and it’s become easier for me to let people and situations go. I’ll say it again: I’m not who I used to be, and I’m not at all certain that my family member would like me better now than he did before our rift.

All of these realizations followed my initial warm feeling. I’d waited for that perfect apology, and I’d hoped and believed that it’s coming, and my acceptance of it, would make all the damage disappear. Isn’t that the promise of reconciliation? Doesn’t it “make it all better?” Yet I am forced to acknowledge that neither my family member’s remorse nor my freely offered pardon can turn back the hands of time, and that makes me sad.

Not that I’ll stop here. I’ve written back to accept my family member’s apology, and with the help of my wise therapist and those who love me, I’ll continue to work on myself — to exhale hardness and breathe in grace, to see if I can’t land somewhere between naivety and cynicism. And maybe this apology is part of what I needed in order to do that — I’m sure it will help. Still, it feels like a lesson — the hard-won knowledge of a war-torn nation: A cease-fire can’t undo destruction or bring casualties back to life. It simply signals an end of hostilities. It means there will be no new damage.

When it comes to my relationship with my family member, no new damage is important. No new damage is progress. And for now, that’s something to celebrate.

Photo by Jackson Simmer on UnSplash

Published by The Personal Essayist on Medium.com, 5/17/21.

Last night I gave up. Over-active dogs and an over-active illness were keeping me from sleep, my troubles were diving at me from every direction, and I reached the point of mentally throwing up my arms and shouting, “I give up! I’m finished.” And it felt right.

I’ve found myself at this same place many times before, which clearly means that surrendering isn’t the end for me. It is, instead, an emotional push-back after spending days, weeks or months wrestling whatever problems I’m currently facing. It’s seeing with sudden clarity that what I’ve been hoping was inner fortitude was actually a willful blindness to the inevitability of loss, or pain, or a hard fate. It is the frustration of looking in the mirror and seeing a pasted-on smile, or hearing my shrill-pitched voice conveying an almost hysterical — and completely uncharacteristic — optimism. And so, I reach the end of pretense.

Last night the issues facing me were many. Our six-month-old puppy — a rash acquisition — had been teething on anything in sight, and he and our other dog were scrapping loudly over a bone. I’d crept down to the sofa to both monitor their play and listen for signs that the bone had been abandoned for something more interesting — an armchair, for instance. I was also turning over in my head an ophthalmologist appointment earlier that day, during which I’d told the doctor I’d been diagnosed with ME/CFS, only to catch her blank stare. So I’d explained the acronym, and saw — or fancied I saw — her confusion change to disrespect.

When I wasn’t juggling these thoughts, I was swatting away concerns for my stressed-out husband and the business I can no longer help him run, our grown children and their various job/relationship/money concerns . . . healthcare worries . . . climate change . . . government corruption . . . the global pandemic — listen to science, for god’s sake!

And running through it all like a dark thread of despair was an awareness of my own unrelenting illness — the realization that, if nothing changes, I will feel this ill for the rest of my life, and the majority of my goals will remain out of reach.

It was at this point that I gave up. I stopped fighting. I lay on the sofa in the dark and thought, if there is a god, better he/she/it/they take me now. I just can’t fight anymore. In my mind I was a beleaguered, exhausted fugitive cornered in a barn. I raised my hands, walked outside, and waited for the bullets.

They didn’t come. They never do. Instead, I felt a sudden, genuine relief. Because for me these moments aren’t about self-annihilation — not really. They’re about running and running, and reaching a place with no escape, then turning to face what’s pursuing me.

I have a disease. It’s not going away — not today, at any rate. Not in the foreseeable future. On top of that, and partly because of it, my life is complicated. I have few answers for myself, and virtually none for those around me. I can’t be more than I am, and I’m less than I used to be — at least when it comes to my ability to earn money, win love, or make a difference in this world. If what I am is not enough, I’m doomed and I always have been. It’s as simple as that.

Years ago I had a strange and vivid dream. I was standing on a hilltop, gazing over a dark and verdant view particularly pleasing to my soul. In time I turned and noticed a small cottage at my back. I circled it, ducked inside, and found myself in a humble, low-ceilinged room. I was glancing at photos on the mantle when an elderly woman joined me. The house belonged to her.

We exchanged greetings and a few pleasantries, then:

“You know you’re dead?” the old woman said.

I heard myself answer, “I know.”

“It’s not up to me whether you go back,” she said.

I answered again, “I know.”

After I surrender, as I did last night, I grow quiet. I listen for the verdict. I wait for an answer. I still my soul and tread softly, so as not to drown the message when it comes. And it always does come — in a song, or a book, or a show, or a dream, or the words of a stranger, or the wisdom of a friend. A door opens, or at least a window, and I move through it, walking this time — no more dodging, no more running. I let myself be led, having handed my journey over to something bigger than myself — again.