Coming into the Light – 10 Life Lessons from a Year of Writing and Living Courageously

A year ago, a friend asked me to create a blog about our trip to Guatemala. I had never set up my own website before or blogged (gosh, I still detest how that word sounds) or publicly written much at all to that point. But she knew that I liked to write, having watched me carry my journal everywhere back in our days together in Madagascar in the 1990s and then again as we traveled around Guatemala. I assumed I could figure it out, and it seemed like a good challenge.

What I discovered is that there is more formatting and behind-the-scenes work needed to get a website set up than I expected. It’s more time-consuming than it is difficult, and I spent ages just trying to think of a website address. I eventually settled on “Put Your Own Oxygen Mask on First” thanks to a sticky note that sits on my desk as a reminder to myself. At a certain point, I just needed to get writing. So I plugged it in, and after confirming that no one had claimed it yet, I went with it. I know it’s probably too long, but it was time to unstick myself from the nitty-gritty details and get down to writing. As time passes, I adjust and tweak the site’s format and layout. As with so much in life, greater clarity comes with time. You can perfect – or improve it – later. The most important part is to just get started.

First draft yoda

And start I did. I published my first post on November 15, 2018. Looking back at the past year, I am astonished for many reasons, but especially with how this writing endeavor has blossomed and grown. In the past year I wrote 50 blog posts. FIFTY. That’s a lot of 5am wake up calls. The lesson here is that writing is most effectively accomplished with focused, uninterrupted time, and for many writers that’s early in the morning. The other lesson is that I can pretty much turn any pursuit, even if it starts as a passion project, into work. The good news is that I noticed it happening and backed off a bit. That’s the gift of being in your 40’s – perspective and life experience!

Throughout this year I have had days – okay, weeks – where I have become discouraged and self-conscious. My strong and judgmental inner-voice has ruled my thoughts saying, “Who really wants to read this stuff?” and “Isn’t this a little self-indulgent?” I hear a Sarah Palin-esque derogatory and snarkily delivered, “How’s that hopey changey stuff working out?” in my mind and wonder, “What’s the point? Does all this – any of this – really matter?” I am but a drop in an ocean of snark and negativity, and does anyone really care about what I have to say anyway?

Anais Nin quote

But I carried on, because I like writing and how it helps me sort through my thoughts and experiences. About halfway through the year I began to pitch essay ideas to journals and newspapers, partially out of curiosity and partially, to be honest, to see if the pros though my writing was any good. And I was delighted that a couple pieces were chosen to be published! My essay The View from a Chicken Bus, about an indigenous girl’s journey to school in Guatemala, was published by Sky Island Journal in their Issue 9 in June. It has since been nominated for Sundress Publications’ “Best of the Net” and the Pushcart Prize. My essay on being a sandwich generationer and a child of Alzheimer’s was published by the Washington Post in August and then picked up by the Boston Globe, the Chicago Tribune, the Baltimore Sun, and eventually by Maria Shriver who published it in her Sunday Paper on November 3, 2019.

What a thrill and unexpected gift it has been to watch my words travel around the world! Talk about validation! The feedback I have received from readers has been astonishing, compelling, heartening, and uplifting. I am amazed that my words can bring others to tears, or lift their spirits, or provide a new perspective to set the tone for their day or week. Other caregivers who have walked the long, lonely, difficult road of caring for a loved one with Alzheimer’s reached out to me from all over the country to express their sorrow at my loss, but also to share with me their journeys and their pain.

The fact that my experience resonated with so many other people, that my words touched people’s hearts and inspired them to open up to me, highlights how important connection is, how critical it is to break down the feelings of loneliness and isolation – be it from our circumstances or our modern culture – that can overwhelm us. A friend shared, as she observed my writing journey: “I had never really considered how sharing an experience, beyond an in-the-moment conversation perhaps, could help others.” But it does. I think, in some way, I have always felt that innately, but evidence is mounting about how much it matters (and is missing). According to the results of a recent scientific analysis, loneliness is becoming a worldwide epidemic, and not just for caregivers. Fostering connection with other people, providing a means to have hope, it turns out, are critical remedies to a burgeoning public health issue.

Hope is what drives all of us forward. When all else is lost, what propels us forward besides our hope and our connection to other humans and those we love? So, then, why not be guided by hope? Why not seek connection with others (and, when I say connection, I mean authentic, genuine connection, not Instagram likes or FB “friends”). The alternative is so bleak. Everyone struggles. Everyone seeks a purpose and for their lives to have meaning. Having hope is not an absence of difficulty, or an avoidance of reality. It’s the light at the end of a tunnel of darkness; it’s the anchor that keeps you moored in stormy seas; it’s an intangible but absolutely critical feeling that is sometimes found in the unlikeliest of circumstances and where you least expect it. It matters immensely. This coming year I will redouble my efforts to share stories that give hope, especially where and when we least expect it.

Walt Disney storyteller quote

This year has been an exercise in writing, personal growth, and reflection. There is plenty of room to continue to grow in all of those areas. As author Rob Buyea has said, “The largest room in the world is room for improvement.” Isn’t that the truth? I will forever battle the internal judgement that says that no one wants to hear what I have to say, or that I have to prove myself, or that I am only as good as my last published article. I continue to find room to breathe into the self-doubt, to practice empathy and self-compassion. I live and write with integrity and intention. Or I try to. And I am blessed by this purpose-filled life that has grown out of the sometimes tumultuous and quagmired quest for who I wanted to be when I grow up. As I look back, here are the lessons I have learned through this year of writing (plus a couple of years of living):

  1. Don’t let the details be your undoing; as with writing, the first draft usually stinks but it has to be written to get to the next draft; so it is with life – get started and keep going;
  2. My biggest critic is myself – and I suspect I am not alone in that (why else would the imposter syndrome be a thing?). Check the narrative. The feelings are real, but is the story they are telling you true? Monkey mind is how Buddhists describe it. I guess I’ve always been a storyteller of sorts ;-).
  3. Be open to new perspectives about who you are and what you can do. As I began to think of myself as a “writer,” it opened my eyes to new opportunities and to connecting with people in a new way. I have made new friends this year that I would never have known or had occasion to overlap with a year ago;
  4. Curious gets you a lot further than furious when it comes to connecting with and understanding other people;
  5. If you’re at all like me, learn to check yourself when what started as a fun pursuit becomes a deadline-driven project; remind yourself who is in charge – or should be – you or your to-do list?;
  6. Being vulnerable is uncomfortable; it is also real, human, and relatable;
  7. Conformity is boring. Be uniquely you. Always;
  8. Sharing our stories is how we relate to and connect with one another;
  9. Storytelling is an art, and it’s an important part of helping humans understand their purpose and their past;
  10. Thank you for reading!
  11. BONUS – I like lists (and post-it notes).

First draft Anne Lamott

“My deepest fear is not that I am inadequate. My deepest fear is that I am powerful beyond measure.

It is my light, not my darkness, that most frightens me.

I ask myself, who am I to be brilliant, gorgeous, talented and fabulous? Actually, who am I not to be?

I am a child of God.

My playing small doesn’t serve the world. There’s nothing enlightened about shrinking so other people won’t feel insecure around me.

I am born to manifest God’s glory within me. It’s not just in some of us: it’s in everyone. And, as I let my own light shine, I unconsciously give other people permission to do the same. As I am liberated from my own fear my presence automatically liberates other.”

-Marianne Williamson

 

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

 

CrossFit, Community, and Alzheimer’s

Like everyone, there are days when I just don’t want to workout. I spent years not getting much exercise at all beyond bouncing with a baby and “lifting” out of the crib. I was consumed with life – or, more accurately, life consumed me. Besides work deadlines that I shoved into limited daycare hours, the frequent illnesses of young children single-handedly and regularly kiboshed any non-parenting endeavor. Having food in the house, ideally and often elusively meant for the preparation of healthy meals, was one of my bigger parenting challenges. Woven within those typical life-as-an-adult constraints, I lived with bouts of intense physical pain thanks to my then newly-diagnosed and erratically behaving Rheumatoid Arthritis. My mother’s diagnosis with Alzheimer’s amid the fray and buzz of a mother’s life with young children galvanized me to pay attention and spend as much time with her as I could squeeze in, but also laid heavily in my lap a palpable and early burden as well as long-enduring grief. Needless to say, I couldn’t find room in a day to exercise. And then the lack of exercise became the new habit, and it didn’t bother me anymore.

Which is sort of true. In hindsight, the truth is that while I had stopped feeling the yucky bloatedness that I used to feel when I hadn’t exercised for a couple of days, quietly and surreptitiously, toxic, emotional poisons that no longer had an outlet built up inside me. I never realized before this period that exercise provided a means to channel and process whatever was on my mind. I’d go for a run, burn out all the jitters, find calm and perspective, regain my center, and go on with my life. Without exercise, there was no way out for the very real and demanding worries I was facing.

During those years, I was scared, sad, and totally overwhelmed. Parenting in the pre-elementary school years can be isolating as is. Adding a couple of chronic diseases and sandwich generation caregiving to the mix engendered an emotional disaster zone (even for a pragmatic, organized realist). There were no clear answers: for parenting or RA or Alzheimers. Both RA and Alzheimer’s have these vague derivations and prognoses. No two patients are exactly alike; there is no timeline or likely outcome for either. Well, I suppose for Alzheimer’s there is a likely outcome, but there is no roadmap, no treatment plan, and definitely no cure. All this to say, it would have been really good for me to have an outlet and some exercise.

Fast forward a couple of years, and I found myself joining CrossFit Launchpad. It turns out that CrossFit is about much more than exercise and nutrition. The real surprise and what keeps me going back is how much CrossFit is about community. I know, a gym (in CrossFit lingo, a “box”) that’s a community? You are thinking, “What the ever-living (sugar-free) Koolaid are you drinking?” Trust me, I never thought I’d hear myself say those words. But, that’s what it is, and it is part of what has helped me to recognize myself and my life again. All of my responsibilities remain the same. And yet I am grounded, clear-eyed, and less likely to spend an entire workout (or an entire day) near tears. That is partially attributable to exercise, but also to my community. For me, place is all about the people. If I feel connected to a person, I feel connected to a place. It’s the people that keep me coming back.

In addition to running workouts, my CrossFit coach, Ronda, organizes outside-the-box events, including monthly baby blanket-making gatherings for the Family Nurturing Center (FNC) in Boston. I mentioned to her that I was hoping to make a large version of the baby blankets for my mom some day when I had time. With their taggie ends and soft texture (almost like a large twiddle muff), I thought the blanket would be wonderfully soothing as my mom becomes more cold-sensitive, tactile and fidgety. Without missing a beat, Ronda said, “Great idea. We’ll make blankets for your mom.” My jaw dropped. It would never have occurred to me to ask. My go-it-alone, do-it-yourself, never-be-vulnerable internal driver flared. Guilt and shame consumed me. I couldn’t possibly have people spend their time doing that for me. No. I declined. She insisted. Eventually I let go. For once, I let go.

And, you know what happened? I had two soft, beautiful blankets for my mom by the end of that day. I look at those blankets and I see both cozy comfort and love. By allowing help, not only was I able to focus on other things that I needed to do for my mom, but it seems I allowed my community to do something to show their love and support. The number of hands involved in creating those blankets grew exponentially by my letting it go, and simultaneously the number of people whose lives touched mine and my mom’s grew as well. Those involved in that blanket-making session told me afterward that they were happy to do it, and that seeing the pictures of my mom wrapped in her new blankets made them feel good. This turned everything I know about asking for help on it’s head – helping me can help you, too?

Life is an incredible teacher. Hope is restored in the most unexpected ways and places. This is universally true, if you are open to seeing it. Personally, here I sit, as fall descends around me, reflecting on this touching moment and the broader lessons it has to teach. The brilliant vermilion, bright orange, deep purple, golden yellow, and amber-hued leaves of yesterday are scattered in mushy, brown, wet clumps on the pavement, a recent storm having wrested them from their branches. All around me life is closing up shop and preparing for the dark, cold, and barren days of winter. And, yet, I wrap my mom in her new, warm blanket and simultaneously I am wrapped in love and hope. Pico Iyer writes, “Autumn poses the question we all have to live with: 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.”

My truth, this journey, has tested me with its bleak mercilessness. Like the depths of winter, at times it has felt like it would never end. But the light in this truth is all the people who have loved my mom and me along the way, and held us in the light. The smallest gift, the heartfelt gesture, the simple acknowledgement that the journey isn’t yours to walk alone, matter. Genuine connection is the most important aspect of our humanity. Helping other people – and letting other people help you sometimes – are powerful antidotes to lost hope. Help each other. Be kind. Even on the darkest days there is light.

The Warning by Jenny Joseph

When I am an old woman I shall wear purple
With a red hat which doesn’t go, and doesn’t suit me.
And I shall spend my pension on brandy and summer gloves
And satin sandals, and say we’ve no money for butter.
I shall sit down on the pavement when I’m tired
And gobble up samples in shops and press alarm bells
And run my stick along the public railings
And make up for the sobriety of my youth.
I shall go out in my slippers in the rain
And pick flowers in other people’s gardens
And learn to spit.

You can wear terrible shirts and grow more fat
And eat three pounds of sausages at a go
Or only bread and pickle for a week
And hoard pens and pencils and beermats and things in boxes.

But now we must have clothes that keep us dry
And pay our rent and not swear in the street
And set a good example for the children.
We must have friends to dinner and read the papers.

But maybe I ought to practise a little now?
So people who know me are not too shocked and surprised
When suddenly I am old, and start to wear purple.

Purple is the color for Alzheimer’s awareness. Purple also happens to be one of my favorite colors. You have been warned!

Check out related articles below or on my Resources page:

Is Alzheimer’s Diabetes of the Brain?

UVA Brain Discovery Could Block Aging’s Terrible Toll on the Mind

How Biogen Salvaged Alzheimer’s Drug After a Costly Failure

 

Hope and Humanity at the U.S. Border

I’ve been meaning to write – for ages – but time is not on my side. Life happens and I have been swept along with it. I expected September to be a loss with the deluge of emails and activities that accompany back to school. But October seems to be well on its way to disappearing as well. I am not complaining, just explaining my absence!

So, where do I start? I wanted to share Jennifer DeLeon’s article Migrant Stories from McAllen, Texas: Finding Hope and Humanity at the Border that was published on WBUR’s (NPR’s Boston channel) Cognoscenti on September 5, 2019. I fully intended to post it then, but I am only getting to it now (life: see paragraph 1). It’s still relevant and what she witnessed there, plus countless new stories, persists.

Jennifer’s article struck a chord with me on many levels, but I especially love that her story’s title includes the words hope and humanity. I am always trying to find those stories. The whole original intent of this blog was to shine a light on stories of hope where you might least expect to find them. I have no doubt that the situation at the border, as well as the situation that migrants are both coming from and into, requires some fortitude and digging in order to find hope.

Hope, and compassion, come alive through authentic human connection. That’s part of what Jennifer experiences in McAllen. Authentic human connection. Meeting people where they are. Seeing the world through their eyes. It’s not easy. But it’s so rewarding, and so human(e).

Freddie is the name of the nine year old Honduran child that Jennifer profiles in her article. When my daughter was in second grade – about Freddie’s age – she brought home the artwork shown in the image below. It reads: “Show kindness. Avoid easy.”

Imagine a world where we were all guided by these simple tenets. Many adults seem to have forgotten the basic and common humanity and innocence that underlies what these 8 and 9 year old’s already know. Show kindness. Avoid easy.

Show Kindness Avoid Easy

I Ran Two Marathons in One Month

Literally it took me a whole month. As in, I ran a couple miles at a time and over the course of a month somehow I managed to run 52.4 miles, the equivalent of two marathons. Could I have run a marathon, or even a half marathon, in one fell swoop? Heck NO. But I accomplished this and it is a pleasant surprise!

I am participating in the Acadia to Katahdin virtual race series to raise money for Acadia National Park and Millinocket, the gateway town to Baxter State Park, both of which are in the state of Maine. It has been a great experience. The race app helps me track not only how many miles I have run, but also where those miles would put me if I were actually running on the roads around Acadia and Katahdin. And, not that it’s a competition (at least for me), but it also tells me where I am in comparison to the other runners who are participating.

My racing stats are far from impressive, logging my progress in one- to four-mile bite-size chunks and averaging about 12 miles per week and about 9 minutes per mile. Some of those miles are walking, some are running. But that’s not the point! The point is that I am doing it. Like anything in life, it’s putting one foot in front of the other and making progress toward a goal. As an RA (Rheumatoid Arthritis) patient, tying up the laces to my sneakers again and going out for even a mile run consistently is nothing short of a miracle. The days of barely being able to hobble around the block are behind me for the moment. Your guess is as good as mine as to why my RA is behaving itself currently, whether it’s diet or exercise or stress management or better sleep or the super perfect prescription cocktail, but I am running with it (literally) while it lasts!

Will I complete the race’s entire 328.5 miles before December 31, 2019? I would say that’s doubtful. Will I run the actual Millinocket Marathon and a Half that will take place this year on December 7, 2019? No, my long distance days are over. I am a short distance runner these days (and a swimmer – low impact is where it’s at!). BUT, I will be there to cheer on the runners, including my husband, as well as that community that is so dear to me. And in October I will attempt to climb Katahdin for the first time in almost two decades, weather gods permitting. And I can’t wait! My heart has ached to walk those trails I used to clamber up like a mountain goat for fun on a day off. I cannot wait to look out from the peak over the vast and serene landscape of the North Maine Woods, to feel the solidarity of accomplishment with fellow hikers, and the peace and calm that comes from being part of that wild world for a short time. I thought having RA had relegated me to only the low-lying, pond-side trails. And I made my peace with that – the view from there is beautiful, too. But, wow, to climb the mountain!??! What an unexpected gift. This hike will be one of deep gratitude, both that I am healthy for now and that I get another chance.

Life is short and life is also unpredictable. Next year is not a guarantee. October is not a guarantee! I am riding the wave while I can. Sometimes you just have to grab a latte, be bold, be brave, and go for it! And, always, always, be grateful.

 

 

 

 

The End is also a Beginning, Right?

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.

 

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