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

 

Notre Dame and our common humanity

Why is it that tragedy unites us but otherwise we spend our time picking each other apart and spreading divisiveness?

I don’t want to launch into a synopsis on modern politics or the state of the world today. Most people are pretty up-to-speed on the general dark cloud hanging over the western hemisphere without my rehashing it…so I’ll be short and sweet here for the sake of all of our sanity and won’t delve into things about which I know (too?) little.

What I know is this: Notre Dame cathedral burned yesterday and it stopped everyone in their tracks. Suddenly people of all stripes are united in their grief. Facebook posts display picture after picture of individuals’ experiences at Notre Dame, plus stories of longing and sadness from those who hadn’t had the chance to go there and see it in person.

The notion that this monument anchoring the skyline of Paris for centuries is in peril defies belief. This human construct, a display of the beauty that man is capable of creating, has for centuries drawn pilgrimaging Catholics, as well as millions of tourists of other religious and agnostic persuasions, to stand in awe of its majesty. It has survived so much history, so much destruction, from the French Revolution to the two horrific world wars of the 20th century. But in mere hours yesterday it literally went up in flames.

It’s like the smack across the face that the world needed. I hope it is, anyway, and that some long-term good will come of it. Historic monuments like Notre Dame are an investment. They represent hope, connect us to our past, and guide us toward the future. They are an incarnation of what binds us to each other and to our common good. They are a symbol of the best in human civilization – architecturally, culturally, and artistically –  and a beacon when we have lost our way.

We have been living in a period of neglect of community, faith, and hope. We have literally let historic buildings crumble and decay before our very eyes due to a lack of funding, indifference, and disinterest. In our lives, the virtual becomes ever more confounded with reality. We intentionally, or through the magic of algorithms and our personal data, surround ourselves only with like-minded individuals.

Today we must acknowledge these failings and renew our faith that we are more alike than we are different. It’s well beyond time to restore global sanity, to find common ground, and to chart the course forward with an intact moral compass by investing in what really matters. The investment required is not exactly in our history or our future, per se, but both together manifested in how we treat our fellow man today. Words like honor, dignity, respect, integrity, patience, and hope swirl through my mind. The restoration of the building is a worthy aspiration, but those values are what urgently need restoring.

In Honor of the Extraordinary W. S. Merwin

W.S. Merwin, United States Poet Laureate and winner of 2 Pulitzer Prizes for Poetry, author of The Wonder of the Imperfect (among many, many other poems), and founder of the Merwin Conservancy passed away on March 15, 2019.

I admit quite readily that I am no poetry expert, and I have only been to Hawai’i once. I cannot possibly honor the full depth and breadth of Mr. Merwin’s life and works, so today I am posting a collection of tributes and poems by those who knew him best.

What captured my attention and admiration was Mr. Merwin’s authentic, genuine approach to life. He lived his life his way, with a gentle, persistent faith in the renewal of a forest, and of humanity; with a constant striving and belief in his art, his work, the natural world, even or especially when it was contrary to the mindset of the day. He modeled for us what happens when you find your passion and you stick with it. He lived his values with integrity.

The most healing thing you can do for your mind and your soul is to become more aware of your surroundings, to take a deep breath and appreciate what’s around you, to care about the world we live in, and to be uniquely and passionately you. W.S. Merwin lived that ethos his entire life. Take some time to get to know him and the incredible legacy of  his poetry and his palm forest. Today, in his honor, let the antidote to the ridiculous pace of life, the absurdity of the political shenanigans we are subjected to daily – to whatever ails you – be gratitude and moments of joy for this life, for this day, for being authentically you, having hope, and following your passion.

Rest in Peace, Mr. Merwin. With sincere gratitude for your example and your teachings,

Meg

Garden photograph credit to Mr. Larry Cameron

https://merwinconservancy.org/2019/03/poem-of-the-week-for-the-anniversary-of-my-death/

https://merwinconservancy.org/2019/03/pulitzer-prize-winning-poet-w-s-merwin-passes-away-at-91/?fbclid=IwAR1tTYbgyRPbAD_GBhLdM5issWC1Jvri-lYsFXoasQgYFrtbbCgOQdKMmvU

http://time.com/5555727/poet-w-s-merwin-obituary-by-rita-dove/

https://www.theparisreview.org/blog/2019/03/18/poem-for-merwin/?fbclid=IwAR3uvgYWLxMaloO4kl6o-SVu5rvb7fUYGOFYDwDKjK90Ms0YnYWKX6Ynfag

 

The Void

Have you ever felt like you were being chased by silence? Or felt the weight of nothing?

The sudden loss of someone you love does that. There’s this constant sensation that something is missing, this echoing emptiness enveloping you. In quiet moments, the sadness creeps in, sneaks up behind you and surprises you with its tenacity. It’s still here…

My mind searches and searches for answers, attempting to fill this void, but the result is always the same. She is gone and it’s incomprehensible. She was so vibrant and full of life one minute (actually for 71 years of minutes!), and then she was gone. Who knew that the absence of someone could take up so much space in a room? Who knew that silence could be so loud? That emptiness could be so heavy?

Everywhere I look I see the negative space in the composition of my life with Nancy. Where once the space around her defined her physical presence, now the space where she isn’t defines her absence. I first learned the concept of negative space in 11th grade art class. I am not 100% sure I am interpreting it accurately, but this abstract way of thinking resonates with where my grieving mind keeps landing.

We went skiing last weekend, one of Nancy’s favorite activities. When I opened the door to the condo, I expected her to be there, as if maybe our paths just haven’t crossed this past month. Her smile and her voice are so vivid, my mind insists that she’s here somewhere. Out at dinner, the lack of a chair reserved for her made my chest ache. Her absence weighs on us and fills the space between us. I thought I saw her walk by the ski lodge when I was waiting in line inside to get lift tickets. My heart leapt and I almost ran out to call her name. And then my brain caught up with what my eyes thought they were seeing.

On our first run, laying down the first tracks that day after hitting the chairlift for the opening bell, the sun’s rays shone brilliantly through the clouds. I always call this God lighting. In that breathtakingly magical moment, I knew Nancy was with us, that this was her peeking through to whisper hello and good morning and I love you all.

Sun Rays at first run
Nancy’s Hello

What I wouldn’t give for a hug from Nancy right now. How she would have enjoyed being with us.

It was great to see how much fun the kids had, how life goes on for them with so much less heaviness. They happily and fondly and vocally remember her. We talk about her a lot. She is still very much with us, her positive spirit guiding us and encouraging us onward. She would absolutely be telling us to go, live, and enjoy life. And we are…but, for a while anyway, there’s also this mental leap of loss, this inescapable physical void that accompanies us.

I’ll close with this beautiful Maya Angelou poem that the amazing author, storyteller, life coach, and my kindred spirit Susie Rinehart sent to me recently. It expresses so eloquently what I am stumbling through here. Enjoy. And go out there and live!

They Existed, by Maya Angelou

“When great trees fall,
rocks on distant hills shudder,
lions hunker down
in tall grasses,
and even elephants
lumber after safety.

When great trees fall
in forests,
small things recoil into silence,
their senses
eroded beyond fear.

When great souls die,
the air around us becomes
light, rare, sterile.
We breathe, briefly.
Our eyes, briefly,
see with
a hurtful clarity.
Our memory, suddenly sharpened,
examines,
gnaws on kind words
unsaid,
promised walks
never taken.

Great souls die and
our reality, bound to
them, takes leave of us.
Our souls,
dependent upon their
nurture,
now shrink, wizened.
Our minds, formed
and informed by their
radiance,
fall away.
We are not so much maddened
as reduced to the unutterable ignorance of dark, cold
caves.

And when great souls die,
after a period peace blooms,
slowly and always
irregularly. Spaces fill
with a kind of
soothing electric vibration.
Our senses, restored, never
to be the same, whisper to us.
They existed. They existed.
We can be. Be and be
better. For they existed.”

Good Grief, Charlie Brown

Is there such thing as good grief? Because it feels like an oxymoron. Grief is heavy and hard and, of course, sad. It implies the loss of something important. How could that ever be good?

I was saying to a friend the other day that I’ve grieved so much lately that I must be on the path to enlightenment. Right??? I mean, what else is the point of all this suffering and introspection? I get it, I really get it. Life is fragile and short and beautiful and hard. And grieving is something you have to live through; there are no shortcuts. The Weight of Grief, a sculpture by Celeste Roberge, accurately and poignantly reflects how it feels.

grief
The Weight of Grief by Celeste Roberge

Grief is a funny thing. I can be ambling along quite pleasantly in my “normal” life and it just sneaks up, welling up unexpectedly in my chest from seemingly nowhere to overcome me. I’d love to call out, “MERCY”, to the universe and actually get a reprieve. But, instead, here I am facing again the reality that this life journey isn’t something that’s totally in my control and diving deeper into gratitude for what I have and authentically living for what really matters.

Here’s where the good in grief lies. Grief amplifies the otherwise mundane, magnifying the importance of the smallest gesture. I had never understood the importance of ritual, for example. Generally speaking, I am not a huge fan of ceremony or tradition. But when we joined hands in a circle around my aunt to pray together, though our brains were addled with grief and a sensation of numbness was overcoming us, we all knew verbatim the words. It required no shuffling of papers or notes, no cueing, no preamble. There was incredible solidarity in that harsh and deeply painful moment.

Food is another item that ascends to the pinnacle of significance during times of grief. People deliver food to grieving families as a way of saying, “I love you and I don’t know what else to do so here’s one less thing to worry about.” Food becomes an important means of connection, both literal and figurative sustenance.

When my aunt died unexpectedly two weeks ago, she had been anticipating our arrival to visit for a couple of days. Her refrigerator was full of some of the family favorites: her homemade mac and cheese, broccoli (our staple veggie), pasta and meatballs, and ricotta cookies. We decided that we should gather as a family and enjoy the meals she had prepared. My husband was given the task of packing up the food and bringing it to my cousin’s house. He felt strongly that he was delivering something sacred, so he packed the car with ceremony and care. Nancy had baked her love for us into each morsel of that food. The food was emblematic of her devotion to us and her anticipation of the time we would be spending together. It always tastes good, but never before had consuming mac and cheese been so poignant.

I can’t talk about food and not mention the chocolate chip cookie, which is hands down one of our family’s most treasured delicacies. My mom and my aunt were like some sort of chocolate chip cookie ambassadors, working industriously to spread their love of this perfect cookie far and wide. Chocolate chippers were regularly in the cookie jar on our kitchen counter, homemade and delicious. Every time I came home from college my mom was pulling a fresh batch from the oven, the smell of melting brown and white sugar, butter, and gooey chocolate chips permeating the kitchen. Our exchange students from France, Germany, Serbia, and countless visitors from elsewhere, were quickly indoctrinated to this most American delight. When traveling abroad, my mom even brought brown sugar and chocolate chips with her so she could reproduce the official chocolate chipper there. When I lived in Madagascar, I improvised using chopped up chocolate bars to make some for my homestay family. I am not kidding at all when I say that we believe with an almost religious zeal in the chocolate chip cookie as the quintessential unifier and the answer to almost any question. At Nancy’s celebration of life, we served chocolate chip cookies.

The last item I wanted to highlight are the plentiful rocks and shells on a New England beach. They can seem like nothing much at times, commonplace and a regular part of the beach landscape. Many people just walk by them, preoccupied with their thoughts or focused on the ocean. But in the midst of our intense grief, my cousin’s wife had the presence of mind to collect various shells and rocks from the beach near where Nancy lived. She put them into a wooden box for each of us, and instructed us to build a cairn of remembrance for Nancy at our homes. The cairn, she wrote, will “act as a landmark and a compass to guide us back to the people, places, and communities that Nancy loved.” She also gave each of us half of a shell that another family member has in their collection, a symbolic way to keep us connected across the days and miles between us now that we have returned home. With these beautiful words and her extraordinarily thoughtful gesture, instantly these otherwise ordinary items became a coveted treasure imbued with deep meaning and value.

In grieving there is renewal in connection with family and friends and community. It always comes back to this. That was on display in spades at Nancy’s celebration of life (Community Pays Tribute to Nancy Waddell), and in the food that kept arriving at our doorsteps. In loss we are reminded of what we have and somehow we appreciate it more fully. Out of grief, new friendships and connections are made (I’m looking at you WV Adaptive and HFCC!). In my sorrow, but also in how I have deliberately chosen to live every day of these past two weeks, my aunt is present. Her example, her capacious heart, and her compassionate spirit guide my actions. I can tell she will never leave me. Good grief, that’s an astonishing gift.

charlie brown good grief
Good Grief image by Charles Schulz

Nancy Waddell, Practically Perfect in Every Way

On December 30, 2018, my vibrant, caring, full-of-life aunt, Nancy Waddell, died from complications of a heart attack. Her passing was sudden and quick and far too soon. She spent the morning of December 29 teaching skiing lessons with the adaptive program in Waterville Valley, NH, before coming in for lunch and complaining that she wasn’t feeling well. It was mere hours later that we were facing the unthinkable, that the glue to our family and our greatest cheerleader might be leaving us.

There is something powerful that happens when someone you love dies. My heart is somehow broken and full at the same time. My brain is operating like it was greased with molasses. I feel like I am in some sort of cognitive twilight zone, where all of my emotions are dulled. The reality is so shocking it’s hard to absorb or believe it.

Our family has pulled together and reveled in memories of times long past. We have shared laughter as well as tears, sometimes simultaneously. Friends and neighbors have helped with hugs and meals and rides and entertaining the kids, reminding me once again that community and connection are so important and revealing how much I must have talked about my aunt!

Nancy was no Mary Poppins, but, to me, she was practically perfect in every way. I had intended to write at some point about how she inspires me. I specifically had in mind to profile her fearless leap into Corcoran Pond at Waterville Valley as part of the Cold Turkey Plunge in November. She was dressed in her Fancy Nancy costume, inspired by the Fancy Nancy children’s books written by Jane O’Connor. The purpose of her plunge – “freezin’ for a reason” – was to raise money for the Waterville Valley Adaptive Ski program to which she was so devoted. I even have a note to myself from that day that says, “When I am 71, I want to be like Fancy Nancy!”

Nancy was my other biggest fan. How lucky am I to have had not one – my mom – but two – my aunt – women who loved me and were guiding lights in my life? Nancy always had a comment or like on every text, facebook or blog post. You name it, she read it and commented on it. But more than that, she showed up. She was my partner in caring for my mom, her sister, making the hour drive each way at least once a week to spend time with her. She filled the void of the grandmother my kids lost when my mom was diagnosed with Alzheimer’s and took them under her expansive and caring wing. She taught them to ski, took them sailing, ferried them to events when we were in the process of moving, arrived at our doorstep with a smile and fresh-baked snickerdoodles or brownies or ricotta cookies in hand.

Nancy was the BEST of everything it is to be human and genuine and caring. She was honest about her imperfections, laughed when the children at the childcare center where she worked told her she wasn’t fancy, and never wanted a title or accolades, just to be told what needed to be done so she could get to it. She put her family first – always – and gave completely and selflessly of herself. She devoted herself to loving others and to her community and, in so doing, she created a life of deep meaning and purpose and impact.

I went to visit my mom today at her care home. She is blissfully unaware that her beloved sister is gone or what that means, though she joined us to celebrate Nancy’s life yesterday. My mom’s laughter and love are somehow capable of penetrating the depths of our grief and helping us all feel closer to Nancy’s spirit. Today one of my mom’s neighbors shared that my Mom is the queen of their floor and that she had never met someone with such a big heart. I guess it runs in the family.

Nancy was my role model and she will always be what and who I most aspire to be like. In this time of acute sorrow, I find comfort in the many memories, the endless laughter, and the good fortune to have had two compassionate and caring women lead the way for me. The connection with others that comes from sharing such a loss is powerful and intense, beautiful and horrible all in one fell swoop. We are at the very outset of a long, challenging road to readjust our lives without Nancy in them.

Nancy will always be in my heart and, if I am lucky, in how I live my daily life. I will look for her spirit in the crash of the ocean waves and listen for her voice in the mountain breezes. I will miss her presence with us more than I probably even realize at this moment. And I will continue to face into the pain, because much like with a strong wind, if I don’t face it head on the grief will blow me over.

I am so grateful to have had this woman’s light shine on me and to have known such love that it hurts this much to say goodbye. We had a good run and some great adventures. You taught me by your example what matters most in life. Rest in peace, Fancy Nancy. You were one of a kind.
light-to-the-world-card.jpg

 

A Tribute to My Biggest Fan

To anyone who has been touched by Alzheimer’s, I stand with you.  I know there are millions of us, but I have never felt so lonely as I did in those first few months – years, really – as I navigated what needed to be done for my mom, when, and by whom.  Alzheimer’s is a tricky disease that plays out differently in every individual.  No one could really tell us what to expect, except vaguely; there is no timeline or schedule; there are limited medicines and no cure.

Let me take a minute to tell you a bit about this woman, my mom, so you can fully understand what Alzheimer’s has stolen.  There was nothing my mom could not do, from basic plumbing to planning large parties or family trips to hosting and cooking Thanksgiving dinner for 20 to 30 people.  She was a fantastic gardener and cook and loved listening to music and singing.  She loved to play tennis and to travel; she was very involved in our schools and community, especially with the Philadelphia Parks Alliance.  She attained her Bachelor’s degree while raising 3 young children (cue major guilt feelings for the snarky, bored expression on my face in her graduation pictures).  Our family hosted French and German exchange students during many summers, and most became part of the family and returned many times.  She was a committed friend.

Above all else, she was the most devoted mother – as my brother once said, “Mom was my biggest fan”.  Our birthday parties were simple but special – the birthday cake was always homemade, she planned treasure hunts in the woods near our home, or pin the tail on the donkey in the backyard.  At Christmas she baked cookies of at least 6 varieties and then plated them up and gave them as gifts to all of our neighbors.  She made us homemade Cabbage Patch Kids and Pound Puppies for Christmas when they were all the rage and couldn’t be found in stores. She made our Halloween costumes.  As we got older, she was truly just a phone call away, so reliable, always available to listen.  And she just couldn’t wait to be a grandmother.

It’s weird to write a eulogy for someone who is still alive, but that’s what Alzheimer’s does.  The person stays but who they were goes.

I could write multiple articles, probably fill a whole website, about the nitty gritty details of what it takes to face one’s suspicions and have a conversation about the possibility of Alzheimer’s with your beloved parent.  About reading the book When Things Fall Apart by Pema Chodron and wanting to hurl it against the wall after about page 13 – I wanted to fix it, not accept or sit with it.  About wanting to preserve my mom’s pride and independence, but also being responsible for her safety.  About delicately extracting personal information – Medicare number, financial information, etc. – from a private, independent woman where it had previously not been my place to interfere.  About the painful reality that I would hire a babysitter not to go out with my husband or see friends but to take my mom to a doctor’s appointment or to attend an Alzheimer’s Association meeting or a support group.  About the countless hours I spent trying to figure out what needed to be done – visiting assisted living facilities; making doctor’s appointments; calling care managers, banks, lawyers, the Alzheimer’s Association hotline, care agencies; worrying about my own memory and fate.  About triaging surgery decisions with an orthopedic surgeon while standing in the middle of a grocery store aisle and later while watching my kids at the playground discussing with the neurologist the potential impact on my mom’s brain of her going under general anesthesia.  About how I spent way more time on the logistics of my mom’s life than I could ever spend with her.

Oh, my goodness, the agonizing, sleepless nights, the constant dull ache in my stomach, the heaviness in my heart.  The grief and responsibility weighed on me constantly; I had trouble eating; my RA kept flaring up, which meant I was in terrible physical pain; and I never laughed – life was overshadowed by such a dark and heavy cloud, how could I?

Do you see why I needed an oxygen mask?

It may be helpful for anyone who is dealing with Alzheimer’s in some capacity to hear our story in more detail and some day I will write more.  But, for now, I want to simply share the message of hope I take from this painful journey:  this disease, this diagnosis, tore at the bonds of my family to the point that I thought it would break us.  The grief and responsibility ripped up my heart and broke me down until I was just a shell of my former self.  Eventually I learned to face into the fire and to not shrink back.  And from the ashes of my soul, rose a stronger, more connected, more grounded, happier and much healthier me.

I look at the Alzheimer’s diagnosis as a shot across the bow, a message from the universe to PAY ATTENTION.  My mom was always going to predecease me if life played out in the regular order of things.  So instead of taking her for granted, I really paid attention.  I visited and called more often when she was still able to communicate, and now I visit her as often as I can just to be with her.  My brothers and I talk more often.  My mom’s friends/our hometown community, have stayed in touch all these years, with me and with her, supporting us both through the diagnosis and truly honoring the friend and the person she was by giving her the highest quality of life possible.

As for me, I have a deep and wonderful support system from my husband’s quiet, constant and loyal love to friends who I can feel almost literally propping me up at times.  I try to live in the moment, to seize the day, to be present with my kids even when, admittedly, there are moments I’d rather check out!

I try not to dwell in the land of wishful thinking anymore and to play the cards I’ve been dealt.  To be awoken to the fact that all of this messiness and pain and love and friendship IS life, is a gift.  As John Kulish wrote in Bobcats Before Breakfast, “I grieve in the same measure I have loved”.  And that’s all there is to say about that.  My mom was my biggest fan, and I am also hers.
Courage

 

Parting is Such Sweet Sorrow

It would be disingenuous of me not to share how HARD it was for me to go to Guatemala.  That may have been clear from my earlier post that mentions the soul-searching I went through to decide to go in the first place.  I am nothing if not risk averse.  Or from the tears I cried when it was actually time to go to the airport.  It was really HARD to leave – there were so many unknowns and my old friend self-doubt had a lot to say about my decision.

Sure, I’ve been brave before – ostensibly.  I’ve traveled all over the world, I’ve taken jobs in states and countries I had previously never even been to before arriving for work.  But so much of that bravery was born of desperation or an “it can’t be worse than this” attitude, not actual courage.  And so much of it was before having children.  Going to Guatemala, on the other hand, was a choice to do something different when things were going perfectly fine.  And that kind of rocked me.

One of my favorite all time quotes is: “I went to the woods because I wished to live deliberately, to front only the essential facts of life, and see if I could not learn what it had to teach, and not, when I came to die, discover that I had not lived”.  That’s from Henry David Thoreau’s Walden.  It’s a message I picked up decades ago, and it’s one I’ve carried with me since.

In my twenties, I would literally go to the woods, especially my sanctuary around Katahdin in Maine, where I found my people, my place, my footing in this world when I needed it most.  I find life there to be a little less noisy, a little more simple, and the scenery so beautiful that it soothes my busy brain.

As I’ve gotten older and my responsibilities to and for others have expanded, I try to find ways to simplify my life, to front only the essential things, to bring the peace that I find when I am in the woods home with me.  Despite all my family responsibilities, my anxiety, my self-doubt, I don’t want to forget to live.  I want to live authentically and bravely and not, like Thoreau says, from the vantage point of looking back at the end of my days, discover that I had not lived.

And so I choose, daily, to face into the fear.  I get on the plane (heck, I buy the plane tickets!) to Guatemala; I push the publish button on this blog while cowering behind the screen awash in vulnerability; I belay at the rock gym even though, fully trained to belay, my mind still tells me it’s awfully risky; I participate in a triathlon for the first time ever when my Rheumatoid Arthritis is finally in remission and I think “maybe I can still do something like this after all”; I drive my beautiful, vivacious, young and also scared mom to the doctor and hear the Alzheimer’s diagnosis we have suspected but been dreading; I go to the woods with my kids and share with them the joy I’ve found there, though it’s not nearly as simple or quiet with them in tow!  I stretch the boundaries of my comfort zone.  I breath through the self-doubt and the fear and I LIVE.

My life has been the very definition of bittersweet these last several years.  And I am so incredibly grateful for all of it.  Without the fear, how would I find my courage?  Without the bitter, how would I taste the sweet?

Meme zoom in for blog
From Tinybuddha.com, through Finding Joy website