Dementia’s Daughters

This past December, I had a wonderful experience of connection that reminded me that only if we are honest about and open with our vulnerabilities will we truly connect.

A woman living on the other side of the world found my blog and my essays about my mom and emailed me to share a little bit of her own story about being in the middle of raising young children and also caring for a parent who is losing their memory. I remember so vividly the loneliness and confusion of those early years that I was touched by the fact that I could offer some brief respite and solace to another daughter of dementia.

The first years leading up to and after my mom’s diagnosis were some of the worst of this Alzheimer’s journey, even though her disease is so much more advanced now. I assume my mom was lonely and confused, too. She knew she was forgetting some things, though she forgot more than she realized. She was aware that things weren’t always adding up, a fact that still takes my breath away imagining how frightening and painful it must be to lose pieces of yourself, to blip in and out of the world making any sense at all. It’s one thing to be lost in your own world, as she is now; it’s quite another to know that something is happening to your mind, your agency and autonomy slipping like water through cupped fingers, unable to hold onto it or to grab it back.

I am a do’er and a fixer by nature, but I didn’t know what to do or even where to start after my mom was diagnosed. She didn’t really want to – and maybe couldn’t really – deal with it. Between her cognitive loss and an instinct to protect herself, projecting toward this difficult future wasn’t going to happen. Those years manifested in a constant, low-grade ache between my diaphragm and stomach, where all my anxiety lives. Alzheimer’s/dementia is a slow-moving crash course in loss.

No Power + Responsibility = Anxiety

Inspired by the solidarity I felt with this stranger from the other side of the world, I looked back at other emails that lovely readers sent to me after my essays about my mom were published. They reminded me that I write both to make sense of my own lived experience and to discover and highlight the myriad facets our common humanity. Personal narrative, as a genre, is inherently personal. The key is for one’s personal story to resonate with others in some universal truth kind of way. The word essay actually derives from the French verb “essayer” which means “to try:” try to create meaning, try to connect through storytelling.

Over the years I have heard others share their opinion that the memory unit is one of the most depressing places in the world. When I am there, though, I feel like I am among family. The caregivers and staff do the hard and sometimes thankless work of caring for the residents 24/7. Their caregiving allows me to reprise my role as a daughter after years overseeing my mom’s daily care. All of the residents are someone’s loved one, their diagnosis another family’s heartbreak, their decline something all of us have or will experience in some way. Those who visit – old friends, children and grandchildren, nieces and nephews, siblings, and spouses – all hold stories of who their loved one was, what they loved to do, how deeply they are loved. By sharing the joys as well as the suffering of our similar circumstances we create connection and this connection creates meaning. There is easy companionship in knowing that your suffering is understood implicitly, that your grief is shared, and that you and your loved one are seen and are not alone.

The senselessness of dementia demands a quest for meaning. The connection we share and the ability to hold and share my stories with others of dementia’s daughters gives this decade of my life one answer to the existential question “why?” If I can share my story and offer solace to even just one other person, all that my mom and I have learned and lived will not have been for naught.

The Problem of Alzheimer’s by Jason Karlawish is an excellent recent resource about Alzheimer’s.

Partnering: Forge the Deep Connections that Make Great Things Happen by Jean Oelwang is a wonderful book with resources on how connecting and working in partnership with other people (versus in a hyperindividualistic silo) unlocks manifold rewards.

My podcast interview Every Path Has a Puddle or Two has some pretty decent Alzheimer’s and life advice, too, if I don’t say so myself. My momma would be proud. I learned from the best.

This poem from Rosemerry Wahtola Trommer really resonated with me.

On Pause

It’s been a while. It appears that I needed a break.

I’ll be honest: I’ve been stuck. Stuck in ALL. THE. WAYS. Overthinking. Underthinking. Autopilot. Inertia. Consumed by busyness. Servant to my “to do” list. Distracted by news headlines (I rarely sit still long enough to read the whole article). The general volume of inputs is overwhelming, luring me in until I squander my limited down time (one quick check of my phone or email and a wormhole opens up and consumes me – SO. MANY. SHINY. OBJECTS).

Also, my old friend self-doubt has been visiting. Literally the only visitors not disallowed during these social distance months have been the gremlins of my mind – clearly a mistake! I recently learned that self-doubt, apathy (depression), and anxiety (not good enough) are well-known for causing creative slumps, like writer’s block. When those more negative mindsets take over, a whole lot of nothing happens. Call it what you will, I can assure you that a whole lot of nothing has definitely been happening.

Inertia + depression + shiny objects(distractions) + life responsibilities (the true, legit stuff that needs attention) = stuck.

During this fallow period, I haven’t been fighting it (much). Typically I beat myself up for lacking productivity, wonder what is wrong with me, what I have to complain about, what my contribution to the world is. My inner voice is JUDG-Y. Like majorly judgy. And also a bit dramatic and prone to catastrophizing: “You Could Feel Like This FOREVER;” “Woman Retreats to Home in March 2020, Never Emerges;” “Why Does Everyone Else Handle It Better? You Aren’t Even Trying. You Have Made Nothing of Yourself. No One Wants to Hear What You Have to Say Anyway. Indulgent. Worthless.” You get the idea. Super not helpful.

This time, especially during the depression phase, I simply let go. Simply may not be quite the right word for it – listlessly is probably more accurate. I totally lost the plot there for a little bit. I had truly (and mercifully) forgotten how debilitating depression is. But, thanks to COVID Christmas round 2 (is it really just 2?), I now remember. I don’t want to talk about COVID anything so just trust me when I say that that little Omicron-wrapped holiday care package did my head in.

So how did I get unstuck? It was a splash of honoring it and allowing myself to wallow coupled with knowing what it takes to get myself going again (and time). I implemented all the tools in my anxiety/depression toolbox – get outside, get exercise, feel the feels, take time for myself, breathe (often and deeply), try not prognosticate or narrate my very sad story, connect with sympathetic and wise friends, recognize what is and is not in my control, and try to tame that judgy ass inner voice. At first, the sadness still crashed over my head and (briefly) swept me away. If you too were like, “well, crap, here we go again” for most of December, I hear you. I’ve had to work extra hard to put my oxygen mask on these last several months, sometimes successfully, sometimes not.

Fresh air + exercise + deep breathing + being heard + space + time = unstuck

The empowering part of this episode of reality is that, bit by bit, I clawed my way back. Every path has a puddle or two, and I army crawled right on through the mud (after a good wallow).

By the time late January/early February rolled around, I was starting to feel more grounded. I kept finding nuggets of hope and slowly they grew bigger. A friend proposed the notion of a new year filled with “renewal and reanimation of abiding commitments.” She suggested that I write for 30 minutes a day, a goal that seemed entirely doable. Stephen King once said something along the lines of, “if you show up to write every day, when inspiration comes it will know where to find you.” And so I await inspiration’s arrival.

Today is day 11 of my new/old effort to carve out time for myself before the day gets away from me. Every day I set aside 45 minutes with no distractions: 15 minutes of yoga and 30 minutes of writing. The first few writing sessions produced complete garbage – totally aimless, useless nothings. I thought I was probably permanently broken (inner voice still judgy). I also noticed as soon as I sat still for two seconds how much of my time I allow to be buried under busy (and headlines and other distractions).

After a couple of days of yoga and undistracted writing/sitting/pondering, ideas started to form, and then sentences, and then full paragraphs (not Pulitzer-worthy, but also not utter crap). This subtle but real shift in my daily life helped me reclaim headspace. When I feel frenzied and uncertain, caught up in “doing” mode, I approach life more defensively and am more timid and reactive, like an anchorless ship being batted around by the waves. By carving out distraction-free time for myself, I feel more grounded, content, and sharp, which in turn is empowering and leads to more proactive, purpose- and passion-driven choices. Doom scrolling: not an effective use of my time. Connecting with friends, thinking about big issues, walking peacefully in the woods: really inspiring. More than just the acts of stretching and writing, I have been reminded that creativity and inspiration take root when we slow down and allow curiosity and wonder, passion and purpose, to lead the way, even just for 30 minutes.

Words that got me through it:

The Comfort Book by Matt Haig

Wintering: The Power of Rest and Retreat in Difficult Times by Katherine May

Untethered Soul by Michael Singer

Sitting Still Like a Frog by Eline Snel

On Writing by Stephen King

In Our Care and Attention is Our Continuity by Sonnet Coggins

And, let’s be real: I did not magically find more time in the day. There is only a finite amount of time in a day and my life responsibilities haven’t changed. I carve me time out of sleep. Coffee is also a passion, though, so I guess it’s a win-win? Feels like it for now.

One day at a time.

From the New York Times The Morning: Why We Travel

If you’ve made it this far, don’t forget to check out my * Podcasts, Articles, Books, & Websites page for more good stuff!

It’s A Dog’s Life: Lessons From My Dog Part VI (Don’t Look Back)

Sometimes you just need to get started.

That’s where I find myself these days: broken-brained, busy, and spinning in my tracks. I have all sorts of great ideas peppering my little brain at inconvenient times like halfway through a swim or as I am careening down the highway. As soon as I stop swimming or driving, the flash of brilliance has been overtaken by whatever it is I can’t forget to do or a child with a story to tell or a phone call or text message interrupting my attempt to hold onto my thoughts. Needless to say, I am really, truly brilliant, but you’ll have to just trust me because I can’t remember why.

Ah, life….you prankster.

Today I am stopping the whir for just a minute and compelling myself to slow down, sit in a chair, and show up. To the practice quiet. To calm the frenzied busy-ness in my head. To pause, clear the cobwebs, and set aside the do list. To breathe, long and deep. To finally stop dancing around my laptop as it sits folded closed on my desk and to write no matter how it turns out. To just get started.

Pause. Breathe. Come back to the present.

It can be so hard to stay in the present. We tend to project to the future (planning or looking forward to or setting expectations of what will be) or perseverate backward (replaying past events and conversations, comparing what is with what was (or what we thought it would be)). Both directions can provide useful intel, but dwelling there in the land of should, should have and could have isn’t healthy or productive. This type of thinking tends to be laden with judgy reproach and expectations. Meanwhile, while we are consumed sitting there thinking about it, actual life is passing us on by.

Dogs are masters of living in the moment. Generally speaking, they are known to live in the here and now; they are loyal and honest; they don’t hold grudges; and they love with reckless abandon. Of course, I am chuckling to myself as I write this, because my dog is all of those things except that he has serious FOMO. He looks over his shoulder at what we just passed and I egg him along to join me in the present where, I remind him, walking is a forward motion. He is a miniature reminder and example of what it looks like to live looking over your shoulder and attempting to backtrack: to the dog you just passed but didn’t sniff, or the acorn you wish you had picked up; to live consumed by the narrative of the things you wish you had said, ruminating about how life would be different if only X, projecting forward into the notion that once you get that raise or promotion or title or vacation then you will be happy.

Maybe.

But chasing extraordinary moments in pursuit of happiness is exhausting and often leaves you empty. The extraordinary is this life, right as it is happening now, in tiny little daily moments where you notice. Like when you notice your dog’s imperfections (and your own) and it makes you smile. Not because it’s extraordinary or exceptional – in fact it’s probably the exact opposite – but just because this is it folks. This is all we got.

Don’t get me wrong, there are absolutely forgettable moments. My days are not filled with perpetual delirious happiness, positivity, gratitude and good vibes. Some days I choose to be miffed at the world and some days the world seems to be miffed at me. But often neither lasts too long. I tend to find joy in the mundane, whether by disposition or conscious practice I am not sure. But I know for a fact that there is almost always some miracle of living out there to delight, typically forcing a deep breath and opening up a new perspective.

Dr. Edith Eva Eger, a Holocaust survivor, writes in her profound and moving memoir The Choice: Embrace the Possible, “Many of us experience feeling trapped in our minds. Our thoughts and beliefs determine, and often limit, how we feel, what we do and what we think is possible. I am here to tell you that the worst prison is not the one the Nazis put me in. The worst prison is the one I built for myself.” How can this be, I wonder? She lived through hell, horror and suffering beyond comprehension. She talks about living after with survivor’s guilt and how for a long time she turned her back from her past and (understandably) ran from it.

At some point she realized, though, that no matter how much time she spent beating herself up about the past, about what could have been different if only and why, it would never change.

[I have the choice] “to accept myself as I am: human, imperfect. To be responsible for my own happiness. To forgive my flaws and reclaim my innocence. To finally stop running from the past and do everything possible in my power to redeem it and then let it go. I can make the choice all of us can make. There is a life I can save: it is mine. The one I am living right now, this precious moment.”

Everything is temporary: pain, pleasure; past, future. But, the present, well, you’re always in it.

I’ve asked it before, thanks to poet Mary Oliver, and I’ll ask it again: “What is it you plan to do with your one wild and precious life?”

Go forth, Warriors. Go forth and breathe into the life you’ve got.

For more from Dr. Eger, check out her podcast with Brene Brown on my * Podcasts, Articles, Books, & Websites page.

Utterly Imperfect

I think the pandemic might have broken me.

I have been spending way too much time doom scrolling – the daily COVID case counts barely register anymore amidst all the horrible there is out there to discover. That’s fixable, at least, once it’s been identified. It’s common enough knowledge that human brains are wired with a negativity bias. We just lap that negativity up and tend to remember the negative over the positive. It’s a psychological thing. Google it if you don’t believe me. You can podcast it in many forms as well (click here for one!).

Needless to say, being hardwired toward negativity plus endless access to truly grim news means that essentially every time I open my laptop to write a new blog post I end up “just one more click”-ing myself into oblivion and never actually accomplishing a darn thing. And then it’s time to make breakfast (or sometimes lunch) and then my me time is O.V.E.R.

But I’m back! TODAY is the day! I figured out I was in this unfortunate cycle and am righting the ship and re-prioritizing my time. I have put an end to the doom scrolling and re-committed to putting the screens away earlier in the evening to preserve time before sleep to read an actual, held-in-my-hands book. Lo and behold, it works! Here I am writing again and getting back to what counts. I just updated my blog Resources pages and added a Happy Healthy Kids page. Hello world!

Don’t get me wrong, summer is also just wrapping up so I was a little pre-occupied with squeezing the freaking marrow out of this LIFE. Except it also rained a lot (wettest July on record – lucky us!) or was otherwise 95 degrees with 85% humid and truly, honestly, totally disgusting outside much of time. I may have started to mold, but then again I also didn’t need to water my plants much so there’s that.

It’s not what you look at that matters. It’s what you see.

Henry david thoreau

One thing I discovered over these last several months is that I seem to have left the feeling parts of my brain somewhere back in the spring of 2020 and now live in this strange numb-ish state – like I am sitting on the shore observing from a distance as my active self/life floats by down the river. It appears that the pandemic and all the endless foreboding desensitized me in some way so that what was once a heightened sense of grief or anxiety is now toned down a little. My scientific evidence?: I did a high ropes course with my kids this summer that we had done a couple pre-pandemic summers ago as well. I used to be downright shaking and sweaty-palm scared. I had planned not to participate this time, in fact, knowing how much I hated how it made me feel last time. But that seemed like a lame example coming from a mom who’s always saying things like, “we have to face our fears!”, “lean into the uncomfortable!”, “you only need to be brave for 10 seconds.” So I harnessed up and off we went to the treetops. Same circumstances, same heights, same equipment, same course, same me. Except that I was totally calm. I didn’t dread the bounce in the middle of the tight rope walk. I threw myself off the platform on the zip lines. I just kept moving forward. Sure, I was roped in and checked my gear appropriately, but I wasn’t stuck thinking on the platform. My brain is simply not as reactionary as it was before the pandemic. So that’s good.

However, it’s quite possible that this past summer I also didn’t have the correct date to pick my child up from sleepaway camp. And perhaps I planned a short getaway for my husband and I while the kids were away? To my credit (but really thanks to a friend’s super helpful intel a week before camp started), I figured out that said sleepaway camp was only 3 nights, not the 5 I had planned for in my head. Which meant that if I was in Rhode Island on my child’s third day of camp I would also not be in New Hampshire on what was not only the third but also the last day of camp (hypothetically speaking, of course). That was problematic. Did I mention it’s been a strange time?

Never fear, it ALL worked out. Everyone was retrieved at the right time and in the right place. But, seriously? Never in my prior life would I have imagined coming close to doing such a thing. I pride myself on my organization skills. DAMN. In my defense, I mean, the plans we had for like a year prior never really happened so I just kind of stopped paying too much attention to dates. I didn’t honestly believe the kids would actually GO to camp, so why worry about when they would come home?

Needless to say, I seem to have let go a little, both of control and of schedule (and perhaps orientation to time – maybe that one I want to get back). This pandemic period has taught me all about being imperfect. It’s an honest state of being human. Do your best, always strive to do well by yourself and others, but being perfect is so overrated (that’s the title of my forthcoming, yet-to-be-written book since I am, after all, an imperfection expert). It’s not such a bad thing (I mean, assuming all children are returned to their rightful homes safely and in a timely fashion, of course). Embrace it. Own it. Help others out. Tone down the judgey. We are ALL human, we are all imperfect.

Take a deep breath. We are on this planet, in this life, together.

Update: This Adam Grant article and podcast sheds some light on all the pandemicky feels:

“Adam wrote a viral article for The New York Times on a feeling many of us are struggling with right now. It’s somewhere between burnout and depression: languishing. This neglected middle child of mental health can dull your motivation and focus—and it may be the dominant emotion of 2021. This article originally appeared in The New York Times on April 19, 2021, with the headline, ‘There’s a Name for the Blah You’re Feeling: It’s Called Languishing’. ” Check out the podcast here and other good ones like it here!

It’s a Dog’s Life: Lessons from My Dog V (From the Dog II)

Hi everyone,

It’s Tucker the schnoodle here again, back by special request from my little hoomans. They like what I have to say. They say I am a 300 IQ doggie, whatever that means.

I feel like I covered the basics in my first post but I’ve grown up a lot since then – I am now almost 16 pounds of sheer muscle and love – and have experienced spring for the first time so, yea, I suppose I have a few thoughts to share. Mostly, my ethos can be summed up by these three ideas some smartie put on the internet:

First off, WOW, just wow, about the nature that surrounds us! I have never seen so many chipmunks and squirrels and bunnies and birds! Such delight. Dead or alive, my investigation skills are fully activated. Sometimes I pick up what I find – dead squirrel, bird wing, hopping frog, beetle in the grass – you name it, I have picked it up. That causes much consternation. I would like to say that I learned my lesson, but being a dog I guess I bet I’ll do it again if I am given the chance. Life is short.

Sometimes I get so excited by all the smells during my investigations that I snort like a pig searching for truffles. Boy, that makes the hoomans laugh and laugh. I look at them with disdain – they can be so immature and undignified. Very un-schnoodle-like.

Lately I have added a new member to my pack – my Grammy! Actually, it’s a whole collection of new friends. My main hooman puts me in the car and we Go for a Ride and then we get out at this new place, which, it turns out, is where my Grammy lives! In my whole life I had only met her once and I was so busy trying to eat all the stuff on the ground outside that I barely noticed her. Now, though, we get to go inside and I think pretty much everyone there loves me. All the way down the hall I hear, “Tucker!” or “Tucker’s here!” They want to take pictures with me and give me pets. Sometimes there are dance parties and I participate. One friend likes to walk me and I let him. They all seem to feel really good when I am there. I think there’s some unspoken language of fur that happens between us. I am not sure of exactly what it is, but I feel like this is an important job. I do excel when I have a job. I may have found my people.

I have gone enough now that I know exactly where my Grammy’s room is and am not even scared of riding the elevator anymore. A little secret, though, just between us? I don’t think my Grammy likes me very much. I get this vibe that she prefers her stuffed dog to me. Never fear, I’ll keep trying, but I get the distinct impression that my kisses are not so welcome. It makes me want to try harder, of course, and some days are better than others. Isn’t that life?

I’ve also noticed that my main hooman is much better on our walks. She doesn’t hold my leash nearly as tight as she did after I got attacked. I mean, I can tell she gets nervous when other dogs are off-leash and come running up to us. I bark extra for those meetings, which she really does not seem to like at all. She tells me, “Read the room, Tucker!”, but just like with my Grammy, I’ll keep trying. Persistence is the name of the game. My main goal is to protect my hoomans. And dispense love. And eat the odd dead thing I find in the road. It’s that simple.

Within the One Hundred Year Flood

I kept a chronicle of what we did over the past year so that I don’t forget what it was like to live through essentially a 100 year flood (please tell me that this won’t happen again for another 100 years).

As soon as normal hits, it’s easy to forget the details of what is now mercifully becoming the past. March, April and May 2020 were some of the longest months known to man. And yet somehow the last year is already a bizarre blur. It doesn’t feel like it should be blurry because we were all focused on the most minute little things to keep from going completely insane, but somehow it all just blurred together. Meanwhile, March, April and May 2021 have rocketed on by. I am left gasping for air as I watch time wink and salute as another year of my life speeds off down the highway.

Remember washing groceries and I don’t mean just the fruit and veg? Being afraid of the mail and packages because we just didn’t know? Cooking ALL THREE meals EVERY. SINGLE. (DAMN). DAY with no merciful end in sight? I tried to embrace it, but I could barely deal.

Here are a few highlights (lowlights?):

Day 20 – March 31, 2020 – So here’s a remarkable thing about this social distancing…it’s ridiculously busy in such a weird way. I missed 16 whole days of writing this journal. How is that even possible? Well, I’ll tell you how it’s possible! Because life right now is this twilight zone of surreality. I have been teleported to the 1950s and spend most of my waking hours cooking, cleaning, doing laundry, working with kids on one thing or another, and curating precious items for our consumption or comfort (groceries and paper towels in particular).

It’s funny already to look back at the first three days. Maybe those were the hardest. No, probably not. I think the first two weeks were just a rollercoaster of emotions and moments. Suddenly everything on our calendars was being canceled. It’s both an eerie feeling and also really freeing to just go through your calendar and cross everything off – hockey games, swim practices, play dates…some of that stuff was just filler, but some things, things we had planned for a long time or were really looking forward to, are harder to let go of.

I am looking at my calendar now to jog my memory and am laughing that I literally whited out or deleted anything that had been on there. It’s like when I lived in Madagascar and they would just change the departure time of a flight by erasing it on the chalkboard! Ha! The plans you didn’t do don’t exist, I guess. Which is true enough.

That first week, March 16-22 (because I fast discovered that weekends when you have no plans or anywhere to go are just like any other day), we adhered pretty closely to the routine I set up. It seemed to help the kids structure their time and energy. When I call it “homeschool” I should be clear that it’s more an insanity prevention routine than any actual attempt to advance academics. The days are sooooo long with nothing to look forward to and “nothing to do.” I find you have to beat that emotion of “there’s nothing to do” to the punch by sticking to some semblance of a routine.

Day 49, April 28, 2020 – A month ago today, mom started showing COVID symptoms. March 28. She has been sick for a whole MONTH. That’s daunting. It’s been a long month. For both of us.

Seems the neighbors across the street already sold their house. Even in a pandemic, I guess real estate around here is HOT.

Day 50, April 29 – DAY 50! WOAH. That gives me pause.

Day 63, May 12 – Some food prep of note – whoopie pies, auntie anne’s pretzels, and ice cream. ALL HOMEMADE. Mom’s birthday. And also TWO FULLS MONTHS since quarantine started. Incredible that she is alive – and WELL (it seems) – to celebrate it. Amazing to see her on Mother’s Day in a drive by car parade. I didn’t think I would likely ever see her alive again when she was so sick. It was amazing to see her, even through a windshield.

Wednesday, May 13, 2020 Spring Observations (To keep my spirits up and focus my attention away from the gnawing anxiety and grief within me, last spring I meticulously observed the changes to my front garden. Usually I don’t sit still long enough for more than a passing glance, but last year I tried to take advantage of the quiet (which, incidentally, in some respects, I miss).

It’s been an allergy storm this week! I guess the pollen is out.

At the same time, we have had 3 or 4 nights with freeze warnings. That’s really late in the season. We even had snow on Saturday! What?!?! May 9.

Despite the cold, everything continues to grow. My peonies are practically growing visibly every day. Same with the bleeding heart. The cherry blossoms have held on during all the cold and wind. They are probably about peak now and the blossoms will start to fall off. The front garden bed is still just green but much more full and lush. I added some phlox and lantana a week (or two?) ago and have a “small shade garden” to plant today. Spring is here!

Day 72, May 21 – I was thinking today how this is supposed to be such a busy time of year and usually we are crawling to the finish with millions of things to do and end of year recitals and celebrations, just wanting it all to be done finally. It starts to get warm and we all get spring fever. And then the buildings start to get overwhelmingly hot and the walk to school gets hot and seeing all the same people over and over gets old and then it’s finally summer break.

This year of course none of that is happening. And it’s sad. Well, part of me is sad about it anyway. This weekend is Memorial Day weekend, traditionally the kick off to summer, but it’s no different from any other day or weekend this year…well, that’s not quite true. The warm weather definitely helps and changes the pace of the day and the frame of mind. The kids are most recently keeping busy with remote control cars. We are getting some water guns and have a stockpile of water balloons for backyard summer fun. We continue to wipe down anything that comes into the house with masks and gloves on and rubbing alcohol. Slowly people are starting to get out more with masks on and keeping their distance. Those are the new guidelines as of May 18 when the state started to loosen restrictions a little bit. I immediately was flooded with emails and phone calls to reschedule dentist and doctors appointments. Not there yet. We shall see!

Day 79, May 28 – First “play date” in months walking and rollerblading with friends. Amazing!

I have about 80 miles left to drive on my current tank of gas, which I last filled on March 9!!!!

Day 80, May 29 – Made chocolate ice cream today – YUM!

$1.93 per gallon of gas right now at the gas station nearest to us.

May 9, 2021 – Mother’s Day 2021 – I got to actually be with my mom, not over facetime, not from 6 feet away, not through a car window. So many times over this past year I thought this would never happen, that I would not be able to be with her while she was still alive again. Yet here we are.

Gas is about $2.89 per gallon for the regular stuff. Always fun to track commodity prices over time. And, yes, my garden is growing again and I am delighting in all the things I (apparently) planted last year that I forgot about in the intervening months! Life springs forth anew!

May 25, 2021 – George Floyd. RIP. Has it really only been one year?

A friend read this poem to me when my mom was hospitalized for her second stint with COVID complications:

The Promised Garden

There is a garden where our hearts converse,
At ease beside clear water, dreaming
A whole and perfect future for yourself,
Myself, our children and our friends.

And if we must rise and leave,
Put on identity and fight,
Each day more desperate than the last
And further from our future, that
Is no more than love and respect shown
To all blocked from the garden that we own.

There is a garden at the heart of things,
Our oldest memory guards it with her strong will.
Those who by love and work attain there
Bathe in her living waters, lift up their hearts and
Turn again to share the steep privations of the hill;
They walk in the market but their feet are still.

There is a garden where our hearts converse,
At ease beside clear water, dreaming
A whole and perfect future for yourself,
Myself, our children and our friends.

~Theo Dorgan

To be continued…

Is This Normal?

I am having trouble processing. Anyone else?

I am going to keep this short because, if you are like me, I know your attention span is, ummm, limited? Fractured? Broken?

As things “normalize,” I find myself exhausted by what used to be normal – kids’ activities, packing lunchboxes, the daily schlep to school. I have to wake up early. Every day. And get dressed! Often I even shower. It’s what I longed to have return, but how did I used to do this?

Now there are also people, lots of people. It’s been a slow build to this point since this time last year, really, with lots of steps in between. I guess I knew – or hoped – this day would come, but it’s still hard to believe that we are there. I didn’t realize you could get mentally out of shape from lack of practice, but I think that’s what’s happening. Or maybe I am just a year older and really tired all the time?

When this all started in March last year, what did most people think? A couple weeks? I thought for sure it would all blow over, that the news was playing up the drama and making more out of it than was real, just like any big storm. I knew I could handle anything for a couple weeks. When the duration of the stay at home order lengthened, though, I remember hearing giddy reports that there might be a vaccine – by 2021! – and nearly had a breakdown. How could I survive this modified life for nine or more months? It seemed impossible even with my look-on-the-bright-side-find-the-fun attitude and effort from the very start to create a new routine and structure for our family.

And, yet, here we are. There is a vaccine, and the world – my corner of it anyway – does seem to be opening up again. Instead of literally erasing (I still use white out :-)) all planned activities off my calendar like I did last year, more and more keep filling up the blank spaces of my time. And the hugs, oh the blessed hugs.

Honestly, it’s doing my head in. All of it. It’s joyful and hopeful and heavy with relief but also overwhelming. I am trying to remember the lessons of this year of the pivot, of learning to dance lightly on this earth as it kept shifting beneath our feet. As the tsunami of obligation and busyness hovers overhead, I am amazed by how easy it is to slip right back into old habits.

For today’s oxygen mask moment, let’s be aware of our tendency to DO, our tendency to be so absorbed by the frenetic pace of life that we forget to live it. If, like me, you set new priorities and boundaries during quarantine knowing full well that you would lose the quiet, introspective time when the world inevitably, eventually, reopened, honor them. Or at least go find where you wrote them down and reflect on what they tell you about yourself and about what you perceive to be your best version of this life.

Try not to go about life unconscious to your choices and to your role in your own life. Live life deliberately.

The trouble with the rat race is that even if you win, you’re still a rat.

Lily tomlin

LIVE. LIFE. There is so much room for celebrating that we made it to this moment. And there are so many really hard and really important lessons from this past year that we should never, ever forget.

BREATHE. Continue to be grateful for each and every breath, each and every moment we are given.

Life is fragile. And life is sweet. Cherish it and make it your own.

To be continued….

It’s a Wonderful Thing, A Mother

A print of James McNeil Whistler’s Mother hung on the wall of my childhood home for as long as I can remember. I always found her kind of creepy, to be honest, and the poem by Baroness Von Hutton affixed below it within the frame always felt so dark.

It's a wonderful thing, a mother;
other folks can love you, 
but only your mother understands.
She works for you,
looks after you,
loves you,
forgives you anything you may do,
understands you, and then the
only thing bad she ever does to you
is to die and leave you.

- Baroness Von Hutton

Of course since those days as a little girl staring up at this portrait and trying to understand it (and still trying to understand why it hung in the bathroom of all places), I have become an adult, and a mother, and my mother’s caregiver.

It’s been one helluva year for me and my mom. We have walked the line so many times between life and death. And she just keeps coming back dancing and laughing. Just this week she was hospitalized again. I found myself racing to her side, grateful to be freshly vaccinated but afraid I had missed my chance to be with her while she was still alive after over a year of distanced visits and screens between us. And, you know what? Even though there is only one way for this story to end, even though I have already lost so much of her to Alzheimer’s, the grief that overcomes me at intervals when I face the prospect of losing her remains immense. The words of Baroness Von Hutton resonate more clearly by the day.

My mom (and her sisters) are my guiding lights. I have noticed especially over the past year of isolation and quiet that my most profound and impassioned writing tends to be reflections on my relationship with these women. A Tribute to My Biggest Fan, Nancy Waddell, Practically Perfect in Every Way, Clips

I think about my mom and her two sisters (“Sisters, sisters, there were never more devoted sisters” is the Irving Berlin song that accompanies my memory of the three sisters together, they dancing to the beat and laughing) as I make my way through this world. And I try to channel Nancy and Ellen’s wisdom as I care for my mom.

I have begun to recognize more fully how these women were my champions throughout my entire life; how they showed me by their example what it is to be a strong, courageous, compassionate and caring person; how they showed up over and over again at ballet performances and soccer games, at Thanksgiving dinners and music recitals, at the hospital the day my kids were born. As I wrestle with the phone calls and texts and times together that I miss, though they are gone (or gone in most ways, in my mom’s case), they are always with me. They are a part of me.

I’ve got all of this on my mind, swirling in these emotional crescendos and troughs, when the MAIA Impact School (which, if you don’t remember, is what inspired me to find my voice and share it by starting this blog) announced it’s Nim Mama (“Great Mother” in the Katchiquel language of Guatemala) scholarship. The concept is centered on honoring our mothers and the collective strength, beauty, and transformative power of mothers the world over by investing in the education of an indigenous Guatemalan girl. The images of these pioneering, brave girls with their mothers at their side brought me to bellyaching tears. In these images I could see my mom and my aunts standing beside me, or pushing from behind me, saying, “Go. Be brave. Do great things.”

This campaign renewed the call of these female pillars of my life to channel their strength and rise up to be the courageous, bold, passionate, brave woman they showed me how to be. I am living their values and honoring their legacy by returning the devotion my mom showed to me in my caregiving for her and passing the gift of their strength and love onto my children, both my daughter and my son.

This Mother’s Day, I will ACT for change in their names. I am investing $3,000 in MAIA’s Nim Mama Scholarship Fund, $1,000 each in honor of Ellen, Nancy, and Beth, the fiery, loving, devoted, caring, amazing women who paved the way for me. I can’t think of a better way to honor them than to live their values by working to create a more equitable and just world and launching the next generation of Girl Pioneers to pursue their dreams.

Join me April 29 for the launch event to learn more. Find your voice! Empower another to find hers!

Life is short. We don’t know when our time will come. Make – and be – the change you want to see in the world. Now.

Go out there and get after it!

Full Circle

A year ago today, I had a regularly scheduled quarterly appointment with my Rheumatologist. I knew enough about the “novel coronavirus” to know that being near other people was potentially a risk. We knew by then, also, that the virus was already lurking nearby because our local middle school had been shut for cleaning over the weekend due to a confirmed case. But I was still holding out hope that our family could sneak in a long-planned vacation to San Diego on March 18.

My doctor’s office is located within a large hospital, which was not exactly where I wanted to be at that moment in time. When I arrived, I mentally plotted the best course from my car to the doctor’s office that would ensure I minimized contact with others. I parked on the street instead of in the hospital garage and MacGyver’ed my way through back stairwells and infrequently used hallways, using only my elbows to open doors and letting them slam shut. I was very proud of my stealth, my well-honed survival skills (also known as being an anxious person who perpetually prepares for any eventuality) finally coming in handy.

When I opened the doctor’s office door, a woman was standing at the check-in counter speaking with the receptionist. Two others sat in the waiting room. My evasive maneuvers appeared to be for naught. Then I heard the words “just back from Italy” and nearly exploded. Was this virus really something I needed to worry about or was the news making an exaggeration of things? I paced, refusing to sit on potentially contaminated seats or to touch anything, and waited impatiently for my turn.

It’s still hard to believe that I walked into that office telling myself that I was probably overreacting and that, sure, caution was prudent but let’s not be hysterical. I had a hunch that getting on a plane and going on a cruise were becoming more unlikely by the minute, but it goes to show the power of – what? Denial? Incredulity? The sheer impossibility of what was about to happen? that I doubted the information in front of me – in front of all of us – to that point.

My doctor told me explicitly: no commercial airlines, definitely no cruises, and stay away from crowds. Because of my immuno-suppressed state I did, in fact, fall into a higher risk group. I left dazed – usually reality doesn’t match my over-active imagination. This time I underestimated reality. I felt suddenly quite mortal and very vulnerable. And no one really seemed to know what to do. We had information, but the idea of quarantine and social distance seemed drastic and irrational. People in authority – from the government and the CDC to school departments, business leaders, and medical facilities – kept referencing other people in authority in this bizarre hamster wheel of deer-in-headlights inaction.

On my way home from the doctor, I stopped to see my mom for what I knew would officially be the last time for a while (you know, a couple of weeks – ha!). It felt like a risk – was I bringing something in or taking something home unknowingly? – and I regretted going almost immediately. That afternoon I stood apart from everyone when I picked my daughter up from school, waving to my friends from a safe distance, a little quiver to my lip. My neighbors dropped of N95 masks on my front porch. We debated whether or not our son should perform in his band concert. It seemed insane to cave into irrational fear. But when you can’t see what you fear, what is rational anymore?

March 11, 2020, my husband started working from home. He used to take the train to work every day. On his last commute home another passenger coughed the whole way. We couldn’t figure how me standing away from a crowd at school dismissal was going to help much if he was being coughed on to and from work every day. So he stayed home. And that was just the beginning…

THIS YEAR on March 11 I will get my first dose of COVID vaccine. I am excited that this moment is here – I can taste freedom and some semblance of sure footing again. The mask mandates made a huge difference, as has everything we have learned about the coronavirus and how to treat it and who it affects.

But I am also nervous for all the regular reasons an anxious person would be nervous – unknowns and straying from the norm always provoke anxiety. The norm has become staying home and staying apart, keeping this virus as far away as I possibly can. It’s odd to go out and actively seek it (I do know it’s not a live virus and the vaccines are thoroughly vetted – and I WILL get it, absolutely. I’m just being honest – life is full of both/and situations and this is one. I am excited and I am nervous).

Photo by Ju00c9SHOOTS on Pexels.com

The past year has required serious mental gymnastics. Back-bending our way back to the old normal will be an adjustment too. For me, anyway. To mentally survive this period of extreme isolation required adjusting my threshold for patience and accepting a version of life that was smaller and more insular than I would choose. I took a big step back from my regularly scheduled programming. A friend observed when the lockdowns first started that I was a social butterfly who got her wings clipped. I tried not to dwell on it too much, and to adjust. I just kept going the best I could. And I did. We did.

As the switch flips and we head in the other direction, this March 11 may be the beginning of something new – something normal. I am tempering my expectations and won’t celebrate too soon, but I do have this hopeful sensation bubbling up inside me. Dare I dream of being close to other people again? Hugging my mom? Sending my kids to school full-time and to camp this summer?

It’s a dream right now, but it’s a dream fueled by real, actionable progress not just wishful thinking. I am starting to think that, yes, in fact, we will be alright.

Stay the course. Stay well. We got this.

Hope employs positive action. It is actively moving toward a positive outcome.

Wishing is passive – a wait and see approach. That’s the stuff of fairytales!

– Nicole Seawell @SailorsSweetLife (dot com)

Hope

I’ve been taking a writing class which, ironically, means I haven’t got much time to write (here). But I came across this cartoon thanks to a friend and it was so perfectly aligned with my prior post about Valentine’s Day and Loving Fiercely that I thought I’d pop on, say hello, and share it.

Next week we hit the year mark of this COVID quiet world. I’m working on a piece about that so stay tuned – and stay well!

Have hope. Find hope. Share hope. Be hope.

You will be alright.