For the last couple of weeks, my teammates and I have gotten together in my open garage, with our rowing machines spaced six feet apart, to do our regular morning workouts, just as we’ve been doing since the pandemic began. But over the past few weeks, something strange began to happen. Each day, from one moment to the next, I have been unable to remember the workouts, or unable to keep in my head how many minutes of rest between sets, or do the math about how long the whole workout will take.
The workouts are not complicated, and they aren’t different from what we’ve been doing for years.
But my brain is broken.
A friend, lamenting about missing travel, recently asked a question, “What was the last trip you took?”
I couldn’t remember that February client trip. But you know what I did remember? The March vacation that the pandemic cancelled. My brain conveniently forgot what I had, and focused only on what I’d lost.
My memory is failing me.
The last time I experienced this was when the bombs went off at the Boston Marathon in 2013. Once we were finally able to get home from the course, because we didn’t know what the next few days would hold, I went to the bank to withdraw some cash, just to have it on hand. I put my card into the ATM, and then hovered over the pin keypad. My mind was blank. I tried to think of the numbers, I tried to think of the finger movements, I tried to take the card out and start again, but the grey matter on which the memory sat had gone black.
I tried for weeks to go back, and after a month gave up. I walked into the bank and asked the teller for the number, which she handed to me. It was entirely foreign. I asked if she had reset it. She said, “No, this was the number automatically set when you opened the account ten years ago.”
I’d had the same number for ten years. And it didn’t even look familiar when she handed it to me.
Why do I tell you these stories?
Because the workout numbers were not set by me. The PIN number was not set by me. The client trip was not set by me. None of these things had as permanent of purchase in my mind as the things I set myself.
Just like the marathon bombing inserted trauma into my brain, instantaneously fragmenting formerly organized bits into chaotic shrapnel, this pandemic has provided a slow motion replay, burrowing mole holes that leak at a sludge-like pace information which once easily found purchase.
Wait, many cloves of garlic did that recipe demand? What time am I supposed to pick up the kids? Am I adding these expenses correctly?
Also, I seem to have forgotten my PIN number again. And also the code to my own garage.
My brain is hurting.
This pandemic has been going on for seven months, and we are only halfway through it. The numbers are surging. The headlines are foreboding. The election is unending. And winter is coming.
Maybe you recognize yourself in this post. If you do, I see you, I feel you, I am you. Know that you are not alone. I don’t have any solutions other than what we already know: wear a mask, keep your distance, wash your hands. We will get through it, and we will get through it together. The fact is: there is no other way.
And, me? I’m going to try to focus more on what I have than what I’ve lost. That burden has proven too heavy for me and I can no longer bear its weight.
She would laugh that we were so worried. I can hear her voice in my mind saying, if she understood, “What? About moi? Ridiculous.” She would probably be upset that we even sent her to the hospital in the first place. She is more of a stick-it-out-on-your-own, “I’m not sick, I just don’t feel well,” kind of person.
March 28 to June 5, 2020. That was the duration of my mom’s journey with COVID-19. She went to the hospital with gastrointestinal symptoms. We expected her to get fluids, be monitored for a little while in the emergency room, and then be sent home. Instead they tested her for the then recently arrived COVID-19, which I shrugged off as ER hypervigilance (leave no test un-run!). If only I could be there, I thought, I could explain to them what she can’t, that she always has a little cough and the sniffles. It’s nothing to worry about.
Her positive test result stunned us and resulted in her prompt admission to the hospital, where she tumbled into the black hole of a blossoming public health crisis and a rapidly filling hospital. She used to tell me not to set my expectations too high because then you just invite disappointment. When I heard “COVID positive,” my expectations were grounded pretty firmly in reality.
She endured 2 separate hospitalizations (I wrote about the first one in a HuffPost essay – ironically, it was published the day she was sent back with secondary complications). She ended up spending 3 weeks total in the hospital. She didn’t eat or walk for weeks; had pneumonia (mild, mercifully) and then a pulmonary embolism and thrush. She was poked and prodded every which way and was generally miserable and confused. We eventually made the decision to discharge her from the hospital on hospice with the goal of getting her to a situation where she was comfortable and surrounded by people who loved her (even if I couldn’t be one of them because, COVID, which is pretty much the answer to any question of this dystopian existence anymore). We hoped that with one-on-one attention in a familiar setting someone could get her to eat. And we were prepared, if not, for her to leave this world in peace and comfort.
It was a long, long road full of Boost protein shakes and brownies for breakfast (for her, and, some days, to be honest, for me, too, because, well, I had to find comfort where I could). It was days of phone calls with doctors and nurses and hospice workers and chaplains and family and funeral homes. It was a nurse praying with her as she lay quietly in her bed, telling her we loved her even though we couldn’t be there. It was short Facetimes with my mom and the aides working with her, the Sound of Music or My Fair Lady playing on her CD player in the background. It was texted images of her sitting in a wheelchair getting her nails done or painting during a group activity. It was videos of her shuffle-dancing around the dining room, supported by an aide, honoring the woman she was and infusing joy where they could into her life. It was reports about her learning how to walk again, first with people supporting her on both sides, then, slowly, a few steps on her own. It took about 6 weeks for the odds of her making it through this illness to shift in her favor. She doesn’t remember any of it, which may have been her saving grace. Because she has Alzheimer’s, she lives in this exact moment, and then this one, and then the next, with no reference to the past or the future.
Through, and despite, it all, she exuded her characteristic grit and indefatigable spirit. She gave my brothers and I fatigued smiles through the Facetime screen, her inner spark sometimes igniting in her eyes through the otherwise wan expression on her face. More recently we have received videos of her humming a tune and dancing down the hall to the beat of her literal own drummer. Her laughter echoes like the first birds of spring after a long winter, issuing robustly and sweetly through the air, quickening the rhythm of my heart and flooding my soul with warmth. I only just realized as I listened more intentionally to her laugh, absorbing more fully this sound that so recently I thought I would never hear again, that her laugh echoes the sound of my own.
I guess it wasn’t her time. I guess she still has more to do here on this Earth, more to teach. I don’t know what else to say about how close we walked to the line, and then how she suddenly walked it back. She would say, “What did you expect? Of course I lived. Maybe don’t take life so seriously. Maybe don’t count me out just because the prognosis looks bad (really bad). Now tell me about you. How are you?”
I find myself speechless at times in her presence, my mind bending as I try to reconcile what happened to her and to our family during those months and the vast loss of life during this COVID outbreak, with her physically sitting there still with me, smiling, laughing, and full of LIFE. We sit outside on the patio at her care home admiring the trees and sky, listening to the river, singing or just sitting quietly. She still appreciates beauty in the world: a clear blue sky, a gentle warm breeze. She will close her eyes and tilt her chin upward, breath deeply, and smile broadly, completely at peace, 100% her authentic, younger self, the mom I remember. Post-COVID, she is back to walking unassisted, dance parties, eating, singing, giving back rubs, smiling, and laughing – lots of laughing. She doesn’t have much to say, and doesn’t understand much of what I tell her, but she knows I am someone special to her. She lights up like it’s a surprise party every time an aide walks her outside and she sees me standing there. On some biological level we are still connected, even if she can’t remember my name. She would like to give me a hug, reaches for me, but we sit and tap our toes together instead, a small physical connection that doesn’t potentially jeopardize either of us. COVID kisses. It’s the best we can do for now.
I recognize that I am one of the lucky ones. My mom returned to me from the brink, and she returned bubbling with happiness and love to share. She still has so much to teach, not only to me, but to all of us: about enjoying the simple things in life, like a warm breeze and a blue sky; about what it means to be fueled by love, to be guided by an inner joie de vivre; about dancing and laughing through life, no matter what; about resilience and grit and never, ever counting someone out or giving up, no matter the odds; about how deeply the love between a mother and her child runs, and how it’s still recognizable when all else is lost.
When it comes time to say goodbye, whenever that may be, I hope I will be able to be there and to hold her hand. In the meantime, I am counting my blessings and following her lead: taking a deep breath; embracing unbridled joy; seeking daily, small moments of happiness; loving my family and friends hard; smiling and laughing often; feeling grateful for every day I still have mom on this Earth; and living as close as I can to this very moment, and then the next one and then the next, moment to moment to moment. Even now. Especially now.
My mom survived COVID-19 and has lived gracefully with Alzheimer’s for over 7 years. She still exudes love and compassion for others. She still smiles and laughs. She is still the life of the party. She continues to be an example to us all about a life well-lived, no matter what. She would say, “This too shall pass.” And it will.
It’s the most fundamental aspect of what it means to be alive. In fact, if you google “to breathe” the definition runs from “to draw air into and expel it from the lungs” to “to live” to “to feel free of restraint.” That’s pretty poignant in the context of recent events.
I can’t breathe.
As someone who runs a website called Put Your Own Oxygen Mask on First, who encourages myself and others to take as many big, deep breaths as they possibly can every hour of the day (because I tend to forget – not completely, obviously – but enough that it doesn’t do me any favors), I can’t help but reflect on how powerfully the inability to draw breath has affected our world these last several months.
I continue to try to put my attention towards where I can find hope. Without hope, it feels that we are irrevocably broken and that all is lost. When hopelessness takes over, there is no sense in going on.
I can’t breathe.
But on we must go, deep into the the discomfort and uncertainty. And thus we must, daily, find reasons for hope. If you focus on the thousands of peaceful protestors that have turned out nation-wide and not the looters and property destruction, you start to see the threads of hope and where we are headed. There is a united and diverse coalition actively exercising their democratic rights to confront police brutality and the social inequities that plague this country.
I don’t pretend to have answers. I don’t pretend to get it right every time, and I know that I have work to do to be a more conscious and conscientious ally. I look to my friends of color to understand their daily experience more deeply and to have that guide my actions. I always have, but I am doubling down on that now. I know I can galvanize my privilege and will continue to advocate for the voiceless and vulnerable. I am committed to asking the questions, learning more, and participating in forging a better, safer, more equitable future.
Lift up your voice.
Breathe.And don’t forget – please – that we are still in the middle of a pandemic. Social distancing, masks, and hand washing still matter tremendously. So do police – good police. Both/and. Life is complicated and shades of gray, ironically, not black and white. Let’s not lose track of what the story is about. It’s about greater equality for people of all colors – and that includes access to health care, education, safe living environments, opportunity. It’s about systemic racism that disadvantages some while privileging others. It’s about reforming bad policing. It’s about caring for our neighbors as ourselves, against injustice, violence and virus.
Check out my Resources page for reading and other information on #BlackLivesMatter and being anti-racist.
Where to start? My mom is in hospice care, which is a daunting word but may not mean it’s the end. What were the words the doctors used to describe her during her first hospital stay? Oh, yes, “resilient” and “feisty.” No, I definitely wouldn’t count her out.
That said, she started with COVID symptoms a month ago today. An entire month spent sick and in and out of the hospital. I’ve got a few thoughts about this, but they aren’t what you’d think. The emotional side of our situation seems to have shut down for the time being. What’s on my mind right now?:
1. If she passes from this, would she be considered a COVID statistic? I’m guessing not. And I am guessing she is not alone in this protracted COVID-related battle. So basically the mortality rate is already wrong.
2. Hospice care. Angels on Earth. I wish I had these resources and compassion at my fingertips when my mom was diagnosed with Alzheimer’s. Honestly, I battled the hard stuff alone years ago, not knowing where to start or how to handle it and navigating this totally unfamiliar and uncomfortable (and unwelcome) landscape. No case manager or social worker to listen or guide. Hospice would have obviously been dramatic for back then, but I could have used a crutch. Something. Now I realize what it feels like to have professionals who see this stuff all the time reach out to me and ask if I have questions and how I am doing. I can say with 100% certainty that I could have used that seven years ago. Just putting that out there for what it’s worth. Which actually leads me to a third point that I wasn’t planning to make.
3. Assisted living. What the bloody hell Massachusetts? Get your shit together and help these people out. They have been put in a position of having to function like hospitals because of the state’s lack of preparation. I get it, it’s a crisis, but damnit we saw it coming. It’s one fire drill after another at care homes across the state and the country. Manning the helm are some of the finest people you’d ever want to meet. And I mean the real kind of “very fine people.” They did not sign up to be on the frontlines of anything remotely like this, and surely they are not paid nearly enough for what they do, but they show up day after day with compassion and courage in spades. Meanwhile, front line assistance, offers of free life insurance, etc., focus only on hospitals and medical staff. Massachusetts doesn’t even count assisted living with its nursing home numbers, meaning that state data are undercounting this public health crisis’ impact on seniors. Does this also mean that assisted living residences are excluded from the state’s COVID assistance measures? I cannot fathom how these places continue to function, financially or emotionally, right now. The people who work in these homes deserve recognition, thank you’s, and more. WAY MORE.
Civil War icon Joshua Chamberlain said, “In great deeds, something abides. On great fields, something stays. Forms change and pass; bodies disappear; but spirits linger, to consecrate ground for the vision-place of souls… generations that know us not and that we know not of, heart-drawn to see where and by whom great things were suffered and done for them, shall come to this deathless field, to ponder and dream; and lo! the shadow of a mighty presence shall wrap them in its bosom, and the power of the vision pass into their souls.”
We are being tested. Eventually history will look back on this period, reflect and probably judge, hindsight always bringing clarity of vision that the present doesn’t offer. I think about Chamberlain’s quote, about the courage and valor of battle, the honor of walking a field like Gettysburg or the beaches of Normandy today and thinking about those who have passed before us, who fought so courageously and with a united front for something bigger than themselves.
The enemy is invisible in our current battle, and the battle rages in our hospitals, our care homes, and our public spaces. But the concept endures. The honor in battle (and life) comes from sacrificing for something bigger than yourself, and from protecting the vulnerable. I was taught to respect my elders. They are not expendable collateral damage. We have already failed many of them by not acting fast enough. We can’t give up now. Looking back on this moment in time, we want history to extoll our courage and our compassion, our sacrifice and unity. We do not want to be haunted by spirits admonishing our soul-less self-interest and determined individualism at all costs. Is going “back to normal” really what we want? Normal failed our most vulnerable. We need to do better.
Wew. I woke up in a tizzy today. Tomorrow is a new day. Take a deep breath. We got this.
Taking a break from gallivanting around the world to bring it to you straight here. This is HARD. Today is day 41 by my count. My mom was hospitalized three weeks ago and diagnosed COVID positive. It got REAL around here fast. I wrote an essay about it that HuffPost published this morning. Check it out in my Clips. Also, the featured photo today is a painting my brother did. Just sayin’. So damn talented.
At any given moment I am shades of overwhelmed, fine, depressed, grateful and everything in between. I miss the grocery store. I mean, that’s low. What used to be a chore has become a dreamed-of escape. That’s where we are.
I spend my days cooking, cleaning, doing laundry, procuring food items, entertaining my children (I have stopped calling it homeschooling because that would imply they are learning something when, frankly, I have no idea if they are. I am just happy when we get through another day mostly intact), and trying to keep up with my quarantine journal (which is remarkably challenging to find time for, an odd situation to find myself in since I never leave my home). My mom being unwell has added a layer of intensity to this isolation existence as I have worried for her well-being and tried to navigate emotionally once again how quickly life can be upended. There were days during the past three weeks when I needed to call the hospital to check on my mom but also really, really needed to grab that grocery delivery time one week out (the first available) to ensure my family had the provisions we need. So bizarre. The brave neighbors and friends who are still going to the grocery store jumped in and saved us as my juggling act came crashing down, even sometimes adding a bouquet of flowers to the items they dropped for us on the front porch.
Rest assured, when I am not virtually traveling the world with you, I am keeping it really real here. Our virtual travels and hope-filled stories bring me tremendous joy and give me meaning and perspective (and, boy, have I needed that lately). It’s helpful to focus my busy brain on positive things, to spend time learning about places I’ve never been and remembering places I have.
It all feels so futile sometimes. Life. This version of life in particular. My mom alone in a hospital, sick and unable to communicate. All of us at home. Futile and frustrating and fraught.
And then I remember: One day at a time. Tomorrow is a new day. Breathe.
We need to continue to have hope and to find the fun where we can. My mom, and my beloved aunt Nancy, and their mom would say – this too shall pass. And so it shall.
Today is Marathon Monday in the Boston area. It’s literally a state holiday and a true rite of passage to spring. Obviously the marathon isn’t happening. My family is participating in the #BackyardBostonMarathon instead. I am running around my house 26.2 times; my kids are doing the same around the backyard. My husband is doing an insane number of push ups and sit-ups (to get to 262) plus a 2.62 mile run.
It’s not the marathon, not by a long shot. But if we all do it together (I mean, apart together, of course – stay home! do NOT go on the marathon course), that’ll channel the spirit of the event and that’s meaningful. My mom’s care home and hospital are along the marathon route. Give her a virtual wave and hug as you “run” by. We can use all the spirit of the marathon more than ever because, folks, we are in one right now. I am personally seized up on Heartbreak Hill. So cheer me through and I’ll cheer for you, too. I’d love to see your photos!
This one speaks for itself. The words are perfect for right now, even though the song was released in 1994! I remember it from then, but if you haven’t heard it before it’s timeless and super appropriate for now. The emphasis added by bolding is mine. Those lines get me every time. In 1994 and today. And, also, I am apparently old :-).
None of us will miss this storm. It’s raging all around us now. I’d love to know the end of this chapter, to avoid some of the tougher parts, to know how it’s going to turn out (and of course dreaming that it’s going to turn out okay). But we can’t know that. We are in this and we are in deep. Dive into the well of courage and inner-strength in your heart (dig a deeper well if you need to – moments like these, when we face adversity and are tested, force us to evolve and flex our resiliency muscles), love your neighbors and lift them up (all of them – remember we are ALL human and we are all in this together), and think about how we can do and be better on the other side. Hold on tight. This is one rickety old roller coaster and we are in for some shaking. But that’s where we need to go. And then we will move forward and move on. Changed. Wounded. But oddly stronger.
Woodsong by the Indigo Girls
The thin horizon of a plan is almost clear My friends and I have had a tough time Bruising our brains hard up against change
All the old dogs and the magician
Now I see we’re in the boat in two by twos
Only the heart that we have for a tool we could use And the very close quarters are hard to get used to
Love weighs the hull down with its weight
But the wood is tired and the wood is old And we’ll make it fine if the weather holds But if the weather holds we’ll have missed the point
That’s where I need to go
No way construction of this tricky plan Was built by other than a greater hand
With a love that passes all out understanding
Watching closely over the journey
Yeah but what it takes to cross the great divide Seems more than all the courage I can muster up inside
Although we get to have some answers when we reach the other side
The prize is always worth the rocky ride
But the wood is tired and the wood is old
And we’ll make it fine if the weather holds
But if the weather holds we’ll have missed the point
That’s where I need to go
Sometimes I ask to sneak a closer look Skip to the final chapter of the book And then maybe steer us clear from some of the pain it took To get us where we are this far yeah
But the question drowns in it’s futility
And even I have got to laugh at me No one gets to miss the storm of what will be Just holding on for the ride
The wood is tired and the wood is old
We’ll make it fine if the weather holds
But if the weather holds we’ll have missed the point
That’s where I need to go
Apparently the existential thinking of my French studies sunk in somewhere after all despite the fact that I would desperately wish for the French novels and films of my academic years to come to a conclusion or point of some sort. Mercy!
Several decades later, as I travel in my little world, I notice how the holiday lights proliferate by the day and how the reflecting snow augments their brightness. It’s no mystery that the season of light happens on the longest and darkest of days as we (in the northern hemisphere, anyway!) descend towards winter. As I witness and delight in the decorations springing up around me, and as I set up my own decorations, I can’t help but also think about the darkness.
Darkness usually has such a negative connotation. Certainly at this time of year, darkness comes ever earlier and, as the sun sets, the cold burrows deeper into your bones. Personally, I have trouble leaving the warmth of my home to venture out into the dark. As far as I am concerned, when it’s dark the day is over. That doesn’t work out so well when it is dark at 4:30 in the afternoon. But as I set up my decorations, I find myself anticipating the dark, knowing that the lights are muted, invisible, meaningless without it.
Maybe I’ve spent too much time freezing my toes off in a snowbank recently, but my brain has been firmly veering toward the existential. What would light be if we didn’t have darkness? Not much. It turns out, the darkness I generally dread is the platform for the delight of the glimmering lights all around me. This makes me think further about gratitude and love: Would we even understand our good fortune without suffering? Isn’t grief one of the deepest and most profound expressions of love?
I think about the trials I have faced in my life, about times and places I never want to revisit or repeat, about the people I have loved and lost (or am still losing slowly, every day). I recognize how the challenges transformed me into the person I am today, that the slow loss of my mom to Alzheimer’s forced me to pay attention and to spend extra time with her while we could still talk, that the sudden loss of my aunt drew me closer to my uncle and cousins, that “grief is just love with no place to go.”
Adversity and challenge can be blessings in disguise. With them comes introspection, awareness, knowledge, compassion, connection, and gratitude. Without them is a life unquestioned, many paths not taken. Adversity led me to work in the woods of northern Maine and to travel to the other side of the world to study in Madagascar. It was the discomfort and emptiness of my questioning, who-am-I-and-where-do-I-fit teenage years that gave me courage, that forced me to stretch myself, that showed me who I really was and helped me define my passions, and that taught me to see with gratitude the blessings that exist every day in my life. Once again, the darkness was the platform for the light.
At this consumeristic time of year, I am even more mindful of my many blessings, especially the basics. Here is my short list of cherished things. We should never take these (and many more) for granted. Trust me.
Shelter – I see the snow on the ground, hear the wind howling outside. I have woken with wet toes when the bottom of my sleeping bag slid out from under the tarp that protected me from the rain; I have slept outside when temperatures have dipped below 20 degrees, every article of clothing I could carry on my body, my sleeping bag hood drawn down to my eyes around my head. But my nose was still so cold I had trouble sleeping. I am so grateful to have a roof over my head and heat to keep to me warm;
Umbrellas – You only have to get soaked in a rainstorm once to understand what a wonderful invention these are. Live in the woods working days on end in the rain and you will never forget the comfort of being warm and dry;
Washing machine – As a mom, laundry is, admittedly, the bane of my existence at times. But, oh my gosh, the machine does it all by itself! And we are fortunate enough to have one in our home. One bout of stomach flu running through the family is all it takes to realize how awful life could truly be. Imagine walking your laundry to the laundromat down the street when you are recovering from the flu. That’s right. We are blessed beyond measure.
Clean water – I fill my water bottle directly from the tap. If you have never experienced anything else, it’s easy to see how having clean water, on demand, anytime you need it wouldn’t register as a luxury. But many countries don’t have treated water and many women spend the better part of their days fetching water from miles away. I knew that the parasites and bacteria in untreated water wreaked havoc on more delicate American and European GI systems (sometimes called Montezuma’s revenge), but only recently did it strike me that those who live in developing countries also get sick from the water. Water they drink every single day. Five months in Madagascar taught me clearly how impossible it is to work, go to school, be healthy and strong – live – with constant tummy troubles.
A quality education – Education is a much less tangible “thing,” but it’s so critical that I have to include it. An education is both a foundation and a launchpad. A quality education is something that should be a right and a guarantee. But it isn’t, not in many developing countries (where many girls are fetching water instead of going to school), but also not equitably in the U.S. An education provides a path toward financial security, a way to access broader opportunities, and, fundamentally, hope. She’s The First recently launched a powerful video about how imperative and transformative an education is. One of the extraordinary women profiled is a graduate of the MAIA Impact School in Guatemala.
I could go on. But those are my top five.
Hopelessness is the darkest of places to be. In this season of light and giving, I encourage you to think about how you can shine your light into the darkness. Shine your light on all of your blessings, no matter how small they may be. Reach out to those who are in need of hope. If each of us were to be a ray of light for even just one other person this year, think about how much hope we could fill the world with. Let’s make 2020 EXTRA-ordinary, each in our own ways.
In thinking about something bigger than us as individuals, and in the giving spirit, here are some of my favorite organizations that are doing the difficult, audacious, and awesome work of providing high-quality education, clean water, and recognizing our common humanity across the world. I am holding them and all of my readers in the light this holiday season.
MAIA Impact School – Unlocking and maximizing the potential of young women to lead transformational change.
Water for People – We believe in a world where everyone has safe drinking water, forever.
One Revolution – It’s not what happens to you, it’s what you do with what happens to you.
My mom forgot my birthday for the first time six years ago. As an almost-forty-something, I didn’t need a big birthday party or lots of attention or anything like that. But it is a stunning milestone for a mother to forget the day that she brought her baby into the world. And for said baby, it was incredibly painful the first time it happened. There are some things that seem like they would be impossible to forget.
Especially for my mom, a woman who embraced motherhood fully and in every way. Raising my brothers and I was the best job she could dream of. That’s not just me putting on rose-colored glasses and saying so – she told me that. When I say our mom was our biggest fan, I am not exaggerating. She showed up in so many ways. She was on the sidelines for all of our games, only missing them if there was a conflict with another sibling’s schedule. She attended every ballet recital (a bouquet of flowers in hand), swim meet (day-long affairs in over-hot, heavily-chlorinated air to see your kid swim for 30 seconds), soccer game (sometimes taking up entire weekends for months on end, game after game), hours and hours of shuttling us to music lessons, baseball practice, soccer, tennis – you name it, we played it. Even in the early stages of Alzheimer’s she was there on the sidelines for Kindergarten soccer and witnessed her grandson’s first goal ever. It was 28 degrees, the field was covered in frost, her memory was failing, she was frightened about the future, her world was shrinking – and there she was. She showed up time and again – for us, for everyone in her family, and for her friends.
Grammy at K Soccer
My Beautiful Mom on Top of the World
Don’t get me wrong, we were far from perfect and I am pretty sure she had her moments when she wanted to run out of the house screaming to escape from us and the insanity we were causing her. In fact, she actually did so on at least one occasion, prompting our next-door neighbor, who had been out gardening, to come over and put his arm around her to comfort her. It kind of became neighborhood lore. So I know she thought we were royal pains in the ass sometimes – and we were – and surely she was overwhelmed keeping track of us and our schedules and our issues and, of course, the never-ending laundry. I imagine she had her moments of cursing us quietly under her breath, or venting to her friends or sisters on the phone. I am certain there were lots of things that got missed. My mom was chronically last minute in her approach to life. Her desk was a jumble of papers, binders, and – to my mind – complete and utter chaos. It looked like she didn’t sweat the small stuff, but I think the truth is that she was the world’s biggest procrastinator. You could count on her, but she’d make you sweat it out, tumbling through the door with the cake or hors d’oeuvres or whatever she had promised to bring just seconds before the start of a big event.
For my birthday, she would hang streamers in the dining room and bake a cake from scratch. She took cake-decorating classes to improve her skills, and – as cliche as it is to say it – she baked love into every morsel of every item she made. She planned epic treasure hunts in the woods for my friends and I – two-hour hikes with elaborate clues and “treasure” hidden along the way that ended at a river where we would feed the ducks with stale bread she had been collecting and freezing for months. It only occurs to me to wonder in hindsight how she got the clues placed and the treasure hidden all while baking and decorating the cake, organizing the party, and keeping up with my brothers and I. While those more elaborate birthday celebrations faded away as I got older, if I was home my mom would always bake her famous chocolate chip vanilla cake with cream cheese frosting (recipe below). If I was away, she sent a card and called. She was never extravagant, more of a simple but elegant woman. But she always acknowledged what a special day my arrival was for both of my parents and how much I meant to them. Like I said, this is the stuff that you would think you could never forget.
Beth’s Famous Birthday Cake
My Version – Looks Like a Giant Donut!
But forget she did, first six years ago and increasingly each year since as time for her becomes more and more of a loose construct and words and their meaning elude her. This year I baked her famous cake for my daughter’s birthday and brought her a slice to see if the taste brought back any recognition of all of these wonderful, deeply held memories. She liked the cake, smiled while she ate it, but otherwise was blank. For my birthday, I brought tea and cookies to her care home to celebrate. Because, really, my birthday is about us, maybe even more about her than it is about me if you think about it! She was happy as usual to see me, springing from her chair with delight, her hands swinging dramatically in the air to wave me over, a huge smile across her face. She loved the idea of a party, but I don’t think she really understood the birthday part. She used to break into song, part of her brain holding onto familiar tunes like Happy Birthday better than other things. But she didn’t sing this time. She just enjoyed her cookie and her tea, and I enjoyed her company. Despite all that I have lost of her, I still have that.
I am left wondering time and again as we face into Alzheimer’s ever more deeply, what is life without a memory? I read Atul Gawande’s book Being Mortal: Medicine and What Matters in the End and, while inspired, grateful for this new perspective, and appreciative of the recommendations for aging and dying well, I found myself wondering how one can have a meaningful, purpose-filled life and live life to the fullest until the very end if you can’t remember anything. Who are we without our past? It’s one thing to live in the moment, moment to moment. That’s enlightenment. But isn’t life, ultimately, a collection of memories? Isn’t that what we all aim for, to create wonderful memories? So many of my conversations start with, “Remember when?” What happens when you don’t? Without memories, what does it mean to be alive?
I don’t have any good answers. I just wonder. And I wonder what goes on inside my mom’s head, what she is seeing when she points to things that aren’t there, what she is trying to describe when she can’t find the words, what it feels like to entrust yourself and your well-being completely to another person.
Where is the hope in this? I don’t know. But there is definitely connection. There is some deep, biological recognition of one’s own, no matter what else has departed. And I guess there’s hope – or magic of some sort – in that. And there’s always cake.
I find this time of year to be deeply contemplative.
Summer’s end. Back to school. It’s a time of transition and change. The days suddenly have more structure, the nights get ever shorter, darkness falls earlier and earlier. Eventually there will be a chill in the air and the leaves will start to change color. The trees will suddenly be adorned in vibrant oranges and yellows and reds. And then one day the leaves will all fall.
But I am getting ahead of myself. It’s only early September, after all! Labor Day weekend marks the end of summer officially, but it’s not really over. The weather, at least, will stay nice for a little longer. The world doesn’t end just because school starts again.
It’s just that this time of year is full of so many emotions: anticipating seeing friends again, meeting new teachers, establishing routines, starting up with homework and sports and instruments that have gathered dust all summer. I feel both ebullient and completely overwhelmed. I’m not even the one in school, but there’s a sense of frenzy in the air, as well as a sadness and letting go. This fall is exceptionally poignant. Our beloved Fancy Nancy’s birthday is today. As with summer, and all things beloved, she slipped away too fast. Try as I might, I can’t hold on. My mind keeps searching for her, even eight months later. I am still confused about what happened and where she is. I still wonder when I will see her again.
Similarly, no matter how hard I try to hold onto summer, no matter how hard I try to slow down and absorb it, to make the most of it, to bask in its warmth and freedom, it evaporates ever faster before my very eyes and slips away. I try to hold on, but, like kernels of sand on the beach, it slips through my fingers and becomes ever harder to grasp the harder I hold. I can’t stop the long, glorious, unstructured days from slipping away.
I should note, lest I wax too philosophical and you begin to think that this summer has been one long fulfilling moment, that I recently sent a couple of editors a draft essay I wrote entitled “Losing My Mind(fulness) One Summer Day at a Time.” I’ll publish it here eventually, but I mention it to reassure you that it’s not all roses and summer definitely has its moments that absolutely, 100% drag.
Nonetheless, with its bumps and boredom and sunburns and seriously near-constant interruptions, when it comes to an end, it’s still hard to let go. There is a sheen to hindsight and to time-limited moments. There is an allure to remembering only the good times. And summer is full of good times.
So, what to do?
What if the beauty is the sensation of the sand slipping through your fingers? What if the beauty is in the awareness that it is all fleeting, in the good fortune of having another day? What if the beauty is in the pain, of knowing how much you loved and having to let go? What if the beauty is in the sheer joy of doing a cartwheel on the beach for your birthday, no matter your age? That’s what Nancy would do, and that’s what she always did:
What if the beauty is in celebrating all the memories? Because that’s what we’ve got. Tons and tons of wonderful memories, of summer and of Nancy. And it is beautiful.
Happy birthday, Nancy! You are missed, but you continue to teach me through the example of how you lived your life. I long to see your smile again, to feel your hug, and I miss how special you made me feel. I did a cartwheel on the beach for you, but I may have hurt my neck 😊.
More importantly, I try to see joy in all the little things every single day, like you did. I try to push on when I feel melancholic, a sadness and loneliness and loss creeping up on me, when some mornings I would rather just hide under the covers and skip out on all my responsibilities. I know you would rather see us all living and enjoying our lives, so we have lots to report to you when we meet again!
You lived your life as if it were an adventure every day, curious and compassionate and caring, with an open mind and an open heart. That’s the trick, isn’t it? Life IS the adventure. All of it. The mundane and the magical. The sandcastle and the tide that washes it away. Duck cairns out of scattered rocks. Beauty out of stumbling stones. The difficult endings and the new beginnings.
A couple of weeks ago, a good friend commented that she couldn’t figure out how I have time for everything I am juggling currently. From trying to keep up with my writing to spreading the word about the MAIA Impact School to keeping things together at work and at home, I am busy with a capital B. This got me thinking – where did the time and head space for all of this come from suddenly? Ostensibly all of my responsibilities are the same, so what changed?
I spent some time reflecting on this question and I’ve come up with a couple thoughts. One factor, surely, is that my kids are older. With greater self-sufficiency on their part, I have a longer leash. The time saved by them being able to apply their own sunscreen, tie their own shoes, or put on their own snowsuits is immeasurable. Well, okay, it’s probably 5 minutes each day, but those are some of the more tedious daily demands of motherhood so these milestones matter.
The term “labor of love” also keeps popping into my head. While all of my current endeavors involve work, time, and sacrifice, they also fill my cup. My life is purpose- and passion-filled, and that’s energizing. I used to have a real problem saying “no” so I devoted a lot of time and energy to activities and jobs that left me feeling depleted – or downright stupid and worthless. I am just slightly more strategic about how I spend my time these days. When time becomes a precious commodity, even the most self-sacrificial person learns to guard it more wisely. While I am still horrible at saying “no,” often lapsing into its almost worse cousin “maybe,” I do appear to finally be learning a modicum of boundary setting. Ahhh, your 40’s are good for something!
All that is meaningful and certainly adds up. However, I also lost my aunt this year, the amazing Fancy Nancy, and that sent me into an emotional morasse for a bit. The start of this calendar year I found myself sluggishly crawling through the days after she passed away, trying to get my head around the idea that this woman who was my guiding light and kindred spirit was suddenly gone. I quite honestly still can’t believe it. But these days when I feel scared or uncertain or sad, I can hear her faint but clear voice whispering, “Go. Live!” I think that she has made me braver and more determined.
And then there’s the fact that we moved our mom into a memory care facility last June. As the anniversary of that absolutely gut-wrenching decision and day came and went, I marveled at what a difference a year can make. I knew as my mom’s primary and long distance caregiver that I was working hard on her behalf, and I was aware that her well-being took up a huge amount of space in my life, but until she was settled into a care home I had no idea exactly how much.
Initially, the interventions necessary for my mom to maintain a mostly independent life were relatively minimal. Over time, as the course of her Alzheimers progressed, though, I spent more and more time triaging issues: making health care decisions, as well doctor and dentist appointments; ensuring communication about appointment outcomes and necessary follow up; staying on top of prescription medications; acting in an HR capacity hiring, replacing, and advising aides; organizing payroll and the weekly schedule; paying bills; sorting through clothes that no longer fit and paperwork that was piling up in her office; fielding calls from her aides and her friends with questions, observations, or concerns, and then doing the research to determine if what we were seeing was to be expected and what to do about it. That’s just a sample. Countless other little things would come up to turn an otherwise uneventful day into a fire drill.
For a while, it was all worth it. And then last spring after a visit to see her, I got the distinct sensation that we had reached the zone beyond the peak of the bell curve. My efforts to prop up my mom’s faux independence were less and less noticed by her and more and more consuming for me. I spent incredible amounts of time working on my mom’s behalf, but had almost no time to actually spend with her. After some intense reflection, I realized that if she had perspective on the situation, she wouldn’t want me to feel so sad and torn between my life with my young family and my responsibility for her life hundreds of miles away. And with that knowledge, I began to visit, and eventually chose, a care home for her.
I’ll tell you what. That process, culminating in leaving her for her first night there, was utter hell. I literally cried into my dinner of a bowl of ice cream accompanied by a glass of wine the day I moved her in. I then put myself to bed early, like an overtired, weepy child, both missing my mom as I grieved this moment in our lives and feeling overwhelmed by the responsibility for her happiness. Rationally, I know that’s crazy – you can’t make other people happy – but I still wish I could sometimes.
So here we are one year later. She is in fact perfectly happy. I don’t know that she has had one unhappy day since she moved to memory care. Her life exists in this exact moment. There is no past to dwell on, no ruminating about the future. There is just right now for her, and she seems to be quite amused by it. She knows she is loved, by the staff at her home as well as her family, and I think that’s what she always wanted. She has always been guided by what is in her heart, and that emotional clarity remains.
For me, I am my mom’s daughter again, not her business – heck LIFE – manager. It is one of my greatest joys in this mostly horrible Alzheimer’s journey to have my mom close to me again. She doesn’t know my name, but she knows I am hers (maybe her sister, maybe a friend, but sometimes “her little girl”). She lights up when I walk into the room and trusts me absolutely. We go for walks, and we have lunch. Sometimes I just stop in for 15 minutes to check on her. She comforts me when I cry, not understanding at all that I cry for her, for who she was.
Our mom always wanted us to be fulfilled and happy, and whatever our passions were became hers. She championed our efforts and was our biggest fan – always. One year later, I have achieved more balance and found greater purpose. One year later, I spend less time applying sunscreen to others, and more time with my mom. While I am still my mom’s biggest advocate and primary caregiver, it’s not all-consuming. This unexpected time in my life and space in my mind have allowed in more joy and light. If my mom could understand, I can visualize the smile that would break across her face and how her chest would swell in satisfaction. I am doing the best I can with the cards I’ve been dealt, and playing them to the best of my ability. Just like she and her sister taught me. Go! Live!