Lifted Up By Letting Go

This essay was published in the March 2020 edition of Wellesley Living Well Magazine.

Life consumed me in the early years of motherhood: work deadlines were shoved into limited daycare hours; the frequent illnesses of childhood regularly upended any non-parenting endeavor; time for grocery shopping was elusive; exercise mostly consisted of bouncing with a baby and “lifting” out of the crib. During those demanding and isolating pre-school years I was diagnosed with Rheumatoid Arthritis (RA) and my mother with Alzheimer’s. I found myself wrestling with Pico Iyer’s question, “How to hold on to the things we love even though we know that we and they are dying. How to see the world as it is, yet find light within that truth.”

At the time, I struggled to find hope. The intensity of these divergent and demanding caregiving needs galvanized me to pay attention and not miss this time – any of it – while also laying heavily in my lap a palpable burden. Without exercise, I had no outlet.

Fast forward a couple of years and I found myself joining Crossfit Launchpad. CrossFit, it turns out, is more than lifting weights and intense cardio. The surprise – and what keeps me going back – is the community. Trust me, I never thought I’d say that – a gym that’s a community? But that’s what it is, and it is part of the formula of endorphins, nutrition, and a support system that helped restore my balance, clarity, and health.

Not only is my RA in remission now, but my Crossfit community has also helped me bear the heavy weight of caring for my mom. Outside the gym we gather monthly to make baby blankets for Boston’s Family Nurturing Center. I mentioned that a large version of these blankets, with their taggie ends and soft texture, would be ideal for Alzheimer’s patients. Without missing a beat, the group decided to make blankets for my mom. It would never have occurred to me to ask. My go-it-alone, never-be-vulnerable internal driver flared. I couldn’t have people spend their time doing that for me. I declined. They insisted. Eventually I let go.

And, what happened? I now have two soft, beautiful blankets for my mom. By allowing help, I was able to focus on other things my mom needed. By letting go, I allowed the number of hands who created those blankets – the number of people who touched my life – to grow exponentially. This turned everything I know about asking for help on its head – helping me can help you, too?

Life is an incredible teacher. Hope is restored in the most unexpected ways. This is universally true, if you are open to seeing it. My truth, this journey, has tested me with its bleak mercilessness. As in the depths of winter, I have at times been lonely and cold, wondering if it would ever end. And yet, I wrap my mom in her blankets and this act of support and community warms my soul. The light in my truth is all the people who have held my mom and me along the way. The smallest gift, the heartfelt gesture, the simple acknowledgement that the journey isn’t mine to walk alone, matter. Helping other people – and letting other people help you sometimes – are powerful antidotes to lost hope. Even on the darkest days there is light. Also, exercise helps.

art artistic black and white blank
Photo by Lynnelle Richardson on Pexels.com

What Would Light be without Darkness?

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.”

Grief is really just love quote

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.

  1. 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;
  2. 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;
  3. 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.
  4. 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.
  5. 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.

Brokeness of world quote

 

What are We Without Our Memories?

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.

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.

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.

Bethie O’s Famous Chocolate Chip Vanilla Cake

1 cup yogurt (plain or vanilla)

1 cup oil

2 cups sugar

3 cups flour

2 heaping teaspoons baking powder

3-4 eggs

1 bag mini chocolate chips

2 teaspoons vanilla

Mix. Bake at 350.

Tube cake – at least 1 hour

Flat cake – 30 – 35 minutes

Cupcakes – 20 – 25 minutes

Cream Cheese Frosting

1 teaspoon vanilla

3 ounces cream cheese

Confectioners sugar

Dab of milk

Mix to taste and consistency. And enjoy!

Just because you carry it well

One Year Later

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!

Fill Your Cup

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.

Heschel quote

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!

What if I fall quote