Don’t You (Forget About Me)

If you are a person who intends to live a long life, or if you know someone who is already living or intends to live a long life, gather round.

More than 5 million Americans 65 and older has some form of dementia, according to the CDC. That number is expected to triple by 2060. TRI-PLE. Basically, if it hasn’t hit you yet, it will. And when it does, if you stop reading here you will learn the hard way that you are basically stuck between a rock (not ideal care options) and a hard place (going literally broke to pay for care). And you’ll also miss the 80s flashback at the end of this post.

Long-term care for people with cognitive diseases such as Alzheimer’s and other dementias in the United States is totally broken. This may be true for other conditions, disabilities, and age groups as well, but dementia is what I know. Please refer to our broken health care system for myriad examples of similar dysfunctionality.

A couple of weeks ago I spoke with Paige Sutherland from NPR’s On Point about my experience with long-term care. The episode – Is it time to rethink how we care for dementia patients? – focused on the quality of care for those with dementia, highlighting unique places that have done it differently (village-style settings, more autonomy than is perhaps typically offered in memory care). Check out it and other related resources on my Podcasts, Articles, Books and Websites page.

Personally, it was heartening to hear my mom’s story and voice out in the broader world again. She doesn’t speak much and hasn’t used a phone in easily more than five years so unless you visit her or work with her, her disease has cut her off from the outside world. To hear her name and voice on the radio was nothing short of mind-bending and thrilling.

I came away from the interview, though, realizing once again how complicated and multifaceted dementia and dementia care is. This particular OnPoint episode highlights some of the issues and opportunities with the disease and long-term care, but all the myriad tentacles that touch a family’s life with a dementia diagnosis really requires a multi-part series.

Dementia, of which Alzheimer’s is one version, is a slow-moving tragedy for most (early onset tends to move more quickly). While it slowly destroys your loved one’s mind, it disrupts family finances, implicates the U.S. medical system (which seems bent on punishing people for getting sick through no fault of their own), requires patients and their families to go bankrupt to receive government support. Let’s not even talk about lost wages (and ultimately professional trajectory, in some cases – not to mention sanity) for the family member/person responsible for shepherding the care of their loved one. Or the fact that many private caregivers (“home health aides”) sent through various agencies do not make a living wage, do not have health insurance of their own, do not receive professional training, do not have retirement plans. They typically work multiple jobs just to survive, often taking advantage of having a client with cognitive impairment to nap. Many (most?) are immigrants. Most don’t drive. And none are authorized to give medication. And this just scratches the surface.

Fun facts:

  1. The federal government does not recognize power of attorney (though everyone else does). As power of attorney, one has access to bank accounts and all sorts of decision-making power, but one can’t get a Medicare statement to appeal a charge or an end of year social security statement for tax purposes without cooling one’s heals for several hours at a Social Security office. Time, you know, generally, that caregivers don’t have to spare.
  2. You have to be broke to get a Medicare bed at an assisted living facility. And there’s a five year look back so it’s not like you can move around assets you may have wanted to save for, I don’t know, your kids’ or grandkids’ college tuition or your own retirement or something like that. I mean, who doesn’t want to face bankruptcy in their twilight years? Note: I spent a lot of time trying to double-check this and to understand the Medicare website. I used a website called Boomer Benefits that translated what the Medicare site was saying into English I could understand. I am relying on them for accuracy at the moment. As a not-expert in geriatric care or law, this is how much of the whole last ten years has gone. Research on the internet, read lots and lots, talk with others, get the best understanding I can muster. An elder law attorney would have answers, and also billable hours. See footnotes below.
  3. How about losing out on both your family home and potential income for a loved one’s care due to a parent who didn’t pay their mortgage, unbeknownst to the children, and the house is foreclosed on. Listen here for more on How An Older Person’s Money Errors May Be a Sign of Some Sort of Dementia.
  4. If you choose – or need to go to – a private care facility (see above: not yet broke), and by some miracle your loved one just keeps on living for no good reason other than that they have this crazy will to survive, you will almost undoubtedly run out of money before anyone steps in to help you. In my case, I created a budget for my mom’s care expenses early on and I update it annually. I always trend her costs out assuming 3% inflation annually, which is typically a fairly reasonable rate. Guess what I did not factor into my budget? A pandemic. Inflation. Needing to increase staff wages to retain them (honestly, surely that is a good idea anyway. Why is it that caregivers and teachers and all the people who do the most dedicated, intimate, meaningful work for our families and loved ones are paid the least? How messed up is a financial system that values money over, I don’t know, values?).

The truth is, you don’t usually know much about this until you’re in it. And when you are in it, it’s a really tough time to learn about it or to change the status quo. I was thrown into this role by circumstance, and I do my best to honor my mom and her story. Along the way over the last 10 years I’ve tried to improve, to the extent possible, the road ahead for others in similar circumstances through my work as a Patient Ambassador, as a writer, when opportunities like NPR’s present themselves, and when people call me asking about the care my mom receives because they need to consider what comes next for their loved one.

If 9 to 15 million Americans are going to be impacted, depending on who you ask, this disease is going to affect us all one way or another eventually. We need to work together to improve care models and support, both financial and emotional, to help families function until there’s a cure. It’s a terrible feeling to be forgotten.

I know this isn’t about dementia, but it fits (and it’s a great song):

Footnote

“Most assisted living facilities provide what is considered “custodial care.”

Custodial care typically includes assistance with activities of daily living. These are tasks like eating, bathing, dressing, and using the bathroom. In some cases, it can even include health-related activities people usually manage on their own. Some examples would be taking daily medications or using eye drops.

Custodial care can be either long or short-term, depending on your condition. It can be provided in an assisted living facility, nursing home, or even in your own home with a home health aide under certain circumstances.

Medicare typically does not cover any costs associated with custodial care if that is the only type of care you need.

However, if you are in an assisted living facility or nursing home, Medicare still covers all of your Part A and B medical needs. This includes doctor visits and medically necessary therapy services, plus your prescription medications if you have Medicare Part D.”

We Are the Solution

In November, I traveled to Guatemala to attend the MAIA Impact School graduation. It was a whirlwind three days of travel, meetings, and connecting (or reconnecting) with Girl Pioneers (GPs), MAIA staff, and fellow Board members. It’s been difficult to put into words all of my thoughts and feelings from this particularly poignant event in the history of MAIA, the Girl Pioneers, and their families on top of a return to Guatemala after a four year hiatus. Here are a few highlights: – 41 Girl Pioneers, escorted by their families, graduated from high school in November 2022. Many of these young women are the first in their families to graduate from elementary and middle school, let alone high school. Despite astonishing adversity that increased during the pandemic, when provided opportunity, these bright, courageous pioneers have seized it. They will go on to attend university, participate in paid internships, and enter the formal economy. – MAIA has chosen new leadership, turning the Co-Executive Director role over to Andrea Coche and Martha Lidia Oxi. This transition makes MAIA the first organization of its size in Guatemala with an executive leadership team that is 100% indigenous. Travis Ning, the out-going co-ED, writes, “We have long said our goal was to structure MAIA so that Girl Pioneers could one day hold any position in the organization. This leadership transition signifies that we have completed this task.” -The Volcan del Fuego near Antigua provided a little fireworks display and Lake Atitlan and the surrounding volcanoes delighted with their spectacular beauty. – The reunion with colleagues and friends and the reprisal of human connection and some post-COVID-years normalcy was incredibly invigorating. If ever my passion for the work MAIA is doing and all it has achieved as an organization flagged because of the many distractions and issues that come up over four years in one’s own life, returning to the school and connecting again with the staff, GPs, and fellow Board members refueled me completely. Even though it was school break, there were some programs running. Being able to see the school filled with students and the vibrancy of what happens there during the school year was rewarding. The school has grown into the building since I was last there. While all of the challenges Guatemala and the school and its students face had been laid out to me in one way or another through news articles or program notes or discussions during Board meetings, to physically be present in the place, to connect with the students and staff who have lived through these challenging times, and to hear it from them and see it firsthand was powerful. The school’s work has become ever more critical in the face of more families slipping into extreme poverty, more issues with malnourishment, more clarity in terms of the entrenched barriers the GPs face as they pursue advanced degrees and formal employment. If you have ever wished for the world to be more fair and equal, the MAIA Impact School model creates the change so many of us dream of seeing in the world. In the face of great obstacles, there is so much to celebrate and to be inspired by happening in this little school in Guatemala. I invite you to invest with me in this incredible organization. Together we can break cycles of poverty, discrimination, and inequity and, like the Girl Pioneers, be part of the solution. https://www.maiaimpact.org/be-part-of-the-solution

OMM – Thoughts on Adversity

Adversity is like a strong wind. I don’t mean just that it holds us back from places we might otherwise go. It also tears away from us all but the things that cannot be torn, so that afterward we see ourselves as we really are and not merely as we might like to be.

Arthur Golden, Memoirs of a Geisha, pg. 348

Everyone faces adversity. Lean into it.

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.

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!

Finding Sanctuary

For years after having kids and while taking care of my mom, I had to modify what I thought my life was supposed to be to accommodate what it actually was. I spent far too long trying to shove the round peg that is me into the square hole that was my expectations of myself. Life intervened. Lessons were learned (painfully).

Eventually I let go of some things and I adapted. I left the working world and focused more on my family and my health. It was disorienting and I was consumed by guilt and grief because I wasn’t living the identity I had constructed for myself of being a “working mom.” A paycheck validated my worth and provided confirmation that I was contributing substantively to the world, as sad as that is to acknowledge. Without it, and without a title, I felt diminished and like my tether to and meaning in the broader world had shrunk. My life was fully in the service of others, consumed with sports schedules and camp sign ups, meal planning and doctors appointments. I craved purpose and passion. I got dirty diapers and dishes.

All moms are working moms.

a dear friend pulling me out of the abyss

I couldn’t accept for a while that this was a point in time, a temporary passage and where I needed to be for then, but not forever. I felt like I couldn’t hack it (and of course I assumed as I looked around that everyone else could and was doing “it” better than I was). What was “it,” you might ask? I am not even sure. Life? Work? Or, better, that most elusive work/life balance? My go-to mentality when I am up against a wall is that I must not be trying hard enough. But I couldn’t get out of my own way, and as most people eventually realize walls are pretty solid things. I remember reading When Things Fall Apart by Pema Chodron and wanting to chuck it against the wall after the 13th page because what she prescribed was to sit with my discontent, essentially, and what I wanted was a to-do list to fix it.

When the pace of life and the noise in your head gets to be too much, where do you find sanctuary? For me, there’s nothing like the smell of warm pine needles on a forest floor, the lapping of lake water against an evergreen shoreline, a boulder-strewn mountain rising in the distance, the stillness of sitting quietly by a pond. No cellphones, no crowds, no distractions. With headspace I can reorient and find my center again.

But for the longest time when my kids were young, I couldn’t travel. The place I dreamed of, Mount Katahdin in Northern Maine, was simply too far away and my life was too busy and too consumed by caring for others for me to disappear into the wilderness. Eventually I would institute an annual pilgrimage to Katahdin, but what about all the time in between? I learned to seek elements of Maine closer to home, and to find stability and happiness within. This is what Pema Chodron teaches, but it took me a while to accept it. It’s still a work in progress. I still get wound up like a top and overwhelmed by life. I still am my own harshest critic. But I find my center by carving out time for exercise; laughing with good friends (always reliable for grounding); being curious and just saying yes! to something new sometimes; taking a walk in my suburban wilderness (often now with my dog); and delighting in the little things like a crisp blue sky, flowers, or a box of cookies arriving in the mail. These are highly recommended life hacks for moms and for everyone else who might feel like life is directing them versus the other way around.

Yesterday I was reminded, spectacularly, about the power of finding sanctuary, be that a mountain vista or a more traditional place of worship. At the end of a tour of historic properties in a small, central Massachusetts mill town, our tour guide invited us to see the interior of one of the local churches. As you might guess, I am more of a nature-than-built-environment-as-sanctuary kind of person, but I am also curious. We walked through a dark entry foyer, nothing of note. But as the door to the sanctuary opened, it was a like a curtain that had veiled and protected my heart through this long, challenging year of isolation, lowering expectations, and gracefully accepting our lot was swept aside. This sanctuary of towering ceilings, stained glass windows, and ornate carvings forced a long, deep inhale. This church, modest in presentation from the outside and unexpectedly, stunningly beautiful on the inside, restored part of me that I didn’t even know was missing. It jolted awake a part of my brain that I hadn’t quite even realized was dormant. It reminded me of all the beauty there is in the world, and that you often don’t have to go very far to find it. There are unexpected treasures everywhere, if we are willing to stretch ourselves, be open-minded, and pull open the door to see it.

It’s a Dog’s Life: Lessons from My Dog Part IV (Friendship, Community, and Humanity)

Virtue, tolerance, compassion, and kindness are, unequivocally, alive and well. It may not seem that way at times, but “the better angels of our nature” are on display much more often than not, especially in small moments and daily (even limited by COVID) interactions. There is plenty of headline-grabbing nonsense and legitimate worry about an abundant proclivity to act on our most basic instincts. There’s certainly much to unpack about human psychology and group think, demagoguery, isolation, and desperation. But there are also acts of unparalleled humanity, courage, love, and, fundamentally, connection, to celebrate.

“Emotional literacy is the foundation of resilience, empathy…connection. We are hard-wired for connection and, in the absence of it, there seems to always be suffering.”

Brene Brown

To keep with the dog theme, I’ll start with an example from the night Tucker was injured. As I scrambled to get him to the ER, I sent a quick text to two of his puppy friends (okay, their owners) to let them know what had happened since we had tentative plans to meet for a walk. The response wasn’t just “Oh my gosh, how awful” or even “how can I help,” but instead “I will add extra to the meal I am making for my family and deliver it to yours so you don’t have to worry about dinner” and “I will come sit with you at the vet so you aren’t alone.”

I ended up waiting at the ER for about four hours – there are LOTS of dogs these days and a correlating increase in incidents from dog parks gone wild (plus, I mean, COVID is the answer for any slowdown or SNAFU, isn’t it?). During that time, my family was treated to a homemade meal (not of my making – the best kind!) and I had a friend to help me process what the vet was saying and to remind me to eat something myself. When thanked for their help, both said “of course, that’s just what people do.” And I think that’s exactly right, actually. Generally, that is what people do. And it’s awesome.

Then there was December, a blur of a month at the best of times, which these most assuredly are not. This December was a season of too much loss and too many tears. Through it all I kept coming back to the simultaneous outpouring of compassion and love. Both/and.

During one week in December three friends lost loved ones (only one from COVID, a reminder that people are still suffering life-altering losses and then there is also COVID). COVID-19 – whether the cause of death or not – has turned all norms of grieving upside down with distance and masks and the migraine-inducing nightmare of holding back hugs when that is all anyone wants – and needs.

That awkward restraint notwithstanding, my breath caught at the lump in my throat seeing how people showed up, again and again and in so many ways, for those grieving. In one case, my friend organized a short ceremony outside at a cemetery. It was a frigid mid-winter weekday afternoon in the middle of a pandemic. But when I turned onto the cemetery drive I saw a long line of cars that I recognized, all loaded with friends and neighbors, individuals and full families, who came to pay their respects and show their support. When the bereaved family arrived, people slowly emerged from their vehicles and walked quietly up the frozen, grassy hill to gather around the casket. We represented multiple faiths, many cultures and different backgrounds – and we stood on that blustery hillside, spread at a distance, but together as a community, to honor the passing of our neighbor and friend, to support his family, and to show love despite and because of everything. The officiant noted that as human beings we have our differences and we don’t always agree, but we can all agree that death is inevitable, and we all walk this earth not knowing when the end will be just that it will come. There is unity in this fundamental humanity.

If you choose to peek around the formidable walls constructed by sadness, distance, difficulty, difference, and loss, you will discover some of the purest forms of community, commonality, compassion, and connection. These are where unity and humanity reside. It is from here that we rise up and hold each other up and together. Be curious and kind. Seek the good that emerges from difficulty. Our humanity is in tact. Love wins.

When day comes, we step out of the shade of flame and unafraid.

The new dawn balloons as we free it.

For there is always light, if only we’re brave enough to see it.

If only we’re brave enough to be it.

amanda gorman – the hill we climb

To understand more about what makes us tick emotionally, here is a great podcast: Clear and Vivid with Alan Alda and Brene Brown (on emotional literacy , empathy, courage, and where they come from).

“Empathy is with someone, sympathy is for someone from over here.”

-Alan Alda and Brene Brown podcast conversation
In honor of my friend Ali

Reasons for Hope (and I am Still Here)

Remember back when this whole Coronavirus thing started (see Don’t Freak Out. But Also Don’t Be Cavalier) and I was, well, freaked out, and for whatever reason it made me feel better to look at puppies? Welp, let my silence here be an indicator (warning?) that we went next level. Not only did I look at puppies, but we decided to actually get one. He has arrived and has fully absconded with our hearts as well as my erstwhile writing time (which was carved out in the wee hours of the morning from my erstwhile sleeping time)! It’s all good – he’s worth it – just a shift.

Puppy

So I sit here today finally trying to parse through all of my thoughts from the past, oh, three weeks and maybe even a little bit of these past four months. Distance and time are always good for reflection, so, thanks, puppy, for providing me with both. I was initially feeling like a good rant, given everything, but have redirected my bubbling (boiling?) passion toward a more positive direction (for now – the rant is still percolating, but ranting isn’t terribly productive, is it?).

First things first, a deep breath. Even a recent article in the Wall Street Journal says deep breathing helps build our mental resilience. I say “even” because, while I respect the WSJ, I would have thought the editors would put deep breathing in the “woo woo” section. I already knew that deep breathing was a good idea, and useful to prevent ranting and other forms of insanity, but I was surprised and glad to see the WSJ sharing this wisdom, too. Surely all of us can use a good dose of resilience right now as well as shifting our focus to positive things (the WSJ notes how we are psychologically pre-wired to fixate on the negative – it’s a survival instinct, but it’s a little outdated since we no longer live in caves, usually, and don’t hunt and gather for food in a need-a-speer-and-I-could-get-killed-by-my-dinner-kind-of-way). So, breathe.

Last week, as I was cruising along holding my breath and all caught up in my thoughts about people only thinking about themselves and their own personal happiness, comfort and satisfaction, and how did we get here, and basically WTF is wrong with people it’s-a-little-piece-of-cloth-for-Christ’s-sake-stop-being-such-a-baby, I happened across an interview on the radio with Jane Goodall. She is one of my environmental (and life) heroes, and she is still out there fighting for environmental justice 60 years on. It is remarkable how little her message has changed over the years, and also how accurate it remains (and how calmly she delivers it – no ranting. Incredible). While there is still so much work to be done, still so many people ignoring science, still so much habitat and species destruction, her message is still one of hope. She doesn’t deny any of those issues, nor our role in this pandemic, and yet she remains hopeful. And sometimes I think, how can this be? And, then I realize her genius. Without hope all is lost. Hopelessness leads to giving up. Jane Goodall is not a giver-upper. And that’s inspiring. In the face of the many engrained, long-term problems we as a society need to face and change, we can’t lose hope and we cannot give up.

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

Over two decades ago, she published her book Reason for Hope. In summary, here are her reasons:

  1. The Human Brain (if we use it (that’s my line, not hers) – “We have at last begun to understand and face up to the problems that threaten us and the survival of life on Earth as we know it. Surely we can use our problem-solving abilities, our brains, to find ways to live in harmony with nature.”
  2. The Indomitable Human Spirit – “My second reason for hope lies in the indomitable nature of the human spirit. There are so many people who have dreamed seemingly unattainable dreams and, because they never gave up, achieved their goals against all the odds, or blazed a path along which others could follow.”
  3. The Resilience of Nature – “My third reason for hope is the incredible resilience of nature. I have visited Nagasaki, site of the second atomic bomb that ended World War II. Scientists had predicted that nothing could grow there for at least 30 years. But, amazingly, greenery grew very quickly. One sapling actually managed to survive the bombing, and today it is a large tree, with great cracks and fissures, all black inside; but that tree still produces leaves. I carry one of those leaves with me as a powerful symbol of hope. I have seen such renewals time and again, including animal species brought back from the brink of extinction.”
  4. The Determination of Young People – “My final reason for hope lies in the tremendous energy, enthusiasm and commitment of young people around the world. Young people, when informed and empowered, when they realize that what they do truly makes a difference, can indeed change the world. We should never underestimate the power of determined young people.”

The most compelling of this list to me back then and now is the indomitable human spirit. I think that’s where hope comes in.

Jimmy Fallon interviewed Jane Goodall on Earth Day in April 2020 if you are interested in hearing her thoughts outloud, including how animal trafficking and other forms of environmental destruction lay the groundwork for this pandemic as well as future ones. Unless, of course, we use our marvelous brains and change!

Finally, if you are still reading this, here’s a quick public service announcement: If you don’t really love dogs (like really, really love them), no matter how bored or lonely you are right now (or ever) don’t get one, especially a puppy. They are a lot of work and they deserve to be loved and taken care of now and in the future when life goes back to some semblance of normal. I know the pull of those cute little faces when you are sitting alone in your house day after day, week after week, and pretty much any other living creature coming to love you and direct your attention elsewhere seems like a really good idea. Puppies do those things, but that comes at a cost as well. I am joyfully but majorly picking and choosing how I spend what was already limited free time. I spend most of my day at the edge of my driveway encouraging my puppy to go to the bathroom. I love it, but it’s not super glamorous and if you can’t see yourself doing that much of the day and even the night, a puppy isn’t a good fit. So, there, PSA delivered and off my soapbox.

BREATHE.

Stay well.

You will be alright.

WE ARE THE SOLUTION.

And just wear a mask. If this is the greatest adversity you have ever faced, you are beyond blessed. It’s not hard. Honestly.

Jane Goodall Quote

 

 

100 Days of Quarantine

Yep, that’s right. I’ve been counting. I may be a day or two off because it all blurred together and I couldn’t tell what day was what for a while there, but I am calling it today and sticking to it!

What does this mean? Traditionally, in my experience, preschools and elementary schools celebrate the 100th day of school. The 100 days of school typically signifies that you are over the hump of the school year and on the downward slope toward summer break (that’s my interpretation anyway, no one ever actually explains WHY we are doing this). It drives me nuts, to be honest, because it’s pretty arbitrary and usually involves some sort of project with 100 objects that requires my assistance to collect, coordinate, and recoup after it goes to school. But damn if those traditions don’t just stick in your brain whether you like them or not! And, I mean, come on, 100 days is a freaking long time and a nice, round number so let’s at least notice it if not celebrate it! As far as I am concerned, these 100 days is 1/3rd of a freaking bizarre year and worth reflecting on no matter how many days are still to come.

The 100 days of not being in school? The 100 days of isolation? The 100 days of digging deep (sometimes really, really deep) to find gratitude? The 100 days of riding a roller coaster without ever leaving home?

Are we over the hump of coronavirus now? I suspect not really. Maybe we are over one hump, the first sin wave, but this bizarre period is not yet over. So the trouble I have with this 100 days is that there is no end in sight, and that still incites a little panic and overwhelm at times. I refuse to use the term “new normal.” I hate it. I prefer something like “the way things are for now.” For now is always a good way to approach uncertainty and change. It implies acceptance of the present but knowledge that the future might be different, though when that future comes is unclear.

I am trying to remember what life was like 100 days ago. I still prefer life from 101 days ago, I am certain of that, but am pleased with the mental shift that’s occurred in between. Those early days were LONG. And confusing. And depressing. I would go to bed knowing I had nothing to look forward to in the morning. I am a do-er and a busy bee so the idea that I had nowhere to go and nothing to go do tanked me at first. It felt so heavy, like so much work to get up and just make it through another day. I’ve mentioned before how I felt like coronavirus teleported me to the 1950s as a housewife, right? I swear that’s the truth of it. I wrote in my quarantine journal on March 31, “I missed 16 whole days in 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 sur-reality. 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 (general groceries and paper towels in particular).” That did not feel like much to wake up for. So for a long time I wallowed. For three weeks, in fact, according to my journal. Time is so strange. During the same period that the days were forever long I didn’t have time to write. Riddle me that, Batman.

Anyhoo, I know for sure that those first few weeks were a doozy, with more emails about cancelled plans and “uncertainty” than I care to count. I literally still use whiteout and still have a daily planner so I get to laugh when I look back at my calendar now and see the indent of my pen marks for all the plans that should have been just disappeared from reality by the quick stroke of the whiteout brush. It reminds me of traveling in Madagascar, sitting at the airport waiting on a delayed flight. The airport staff would just erase the departure time on the chalkboard and rewrite a new time when the plane was ready to go – two hours delayed was suddenly, miraculously, right on schedule! It’s like the question of whether trees falling in the woods make a sound if no one can hear them. If the plans you didn’t do don’t exist, well, did you miss out on anything?

I have 154 pages (including lots of pictures) keeping track of the last 100 days to pour over one of these days. In sum, a haiku:

Grief. Plodding days. Fear.

April snow. Enough! Spring blooms.

Pollen, hope abound.

Or something like that! I do love a good haiku :-).

So, today – day 100 – I am not saying we need to celebrate. But maybe we might as well (we did, after all, flatten the curve (where I live anyway) so at least a pat on the back is warranted for that)? My March 12, 2020, post Don’t Freak Out, But Also Don’t Be Cavalier is still all true. With the benefit of hindsight, I can say that the puppy thing is very real as is the racism.

It’s a remarkable thing that the whole world is living through at the same time. I don’t think it’s particularly helpful to define this period as good or bad, but we should notice all of it, learn, and adjust. Maybe I will make a list for next time of all the things I have learned over this time. Camus sums it up well, but I am always up for a good list.

Camus Quote

You will be alright.

Wash your hands.

Stay well, stay (close to) home?

 

 

Time to Put On Our Rally Caps!

I am overwhelmed. I am going to put that straight out in front. This is one helluva time and I think I have experienced every emotion under the sun (or rain) in the past 9 days. Has it been 9 days? Who knows. What day is it? Does it really matter?

Let’s start where we should all be starting, especially these days: with a big deep breath.

BreatheAlways, always start here. Breathe.

Cherish every single deep, easy breath you have. I notice and value those long, slow exhales and rejuvenating inhales now more than ever. Breathing deep and clear is a gift. Enjoy every single one.

Another gift: how much the notion of putting your own oxygen mask on first resonates in this moment. I certainly pray that no one needs an actual oxygen mask anytime soon, but also hope that this metaphorical one will provide sustenance and inspiration during these uncertain times. OlafTune in when you need hope, solidarity, or just something to do! I am no FDR, but hopefully you’ll find reassurance in this modern day fireside chat and Olaf-like warm (virtual) hug.

As I was saying, this last week was something else. I found myself embracing the moment (or trying to) while grieving for the sudden rupture in our lives. One moment I was riding the tide of enthusiasm and I-can-do-this, the next I was crashing headlong into I-am-not-a-circus-performer and I need some serious me-time. I am despondent over the impact on the economy, small businesses and those who are financially insecure or otherwise vulnerable. I have dug myself emotionally into a hole and climbed back out again, struggling at times, on multiple occasions. I have reckoned with my mortality and what we need to do to get our affairs in order – just in case – while attempting to keep my kids content, reassured, and in some semblance of a routine. Did I mention me-time? I don’t understand quite how it happened, but while I go nowhere I simultaneously have less time and way more to do.

What I have learned, once again and in spades, is that I cannot be all things to all people all the time. First and foremost in this current iteration of life, I am not a teacher, and certainly not of math. All hail teachers! I’ve always wondered how they do it, and daily I accept more fully that it’s a calling and it’s not mine. But I totally get this equation, and this is what I really want to talk about:

Anxiety = Uncertainty * Powerlessness

My intrepid and wise friend, Nicole, of Sailor’s Sweet Life, shared that with me and encouraged me to find ways to empower myself to combat that sense of powerlessness.

As I go about my days here, cleaning and cooking and doing obscene amounts of laundry and dishes and teaching and loving and trying to work and wanting to write and also wanting to run away (flee instinct firmly intact), I have been reflecting on that notion of empowerment and what empowers me. And I realized that I feel most empowered when I am engaging with and learning about other people and how they see and experience life. If I have a calling, connecting with people from all over the world and then connecting them to each other is possibly it. I love to discover what makes us similar, how we are different, to hear their stories and learn more about their lives.

In this odd moment in history, we are all connected perhaps more than ever. And we are all existing and navigating this moment in our own ways, with our own perspectives. Never has the broader world been so inaccessible yet so connected. Instead of feeling grounded and trapped, I have decided to embark on an adventure of connection and imagination.

So, fasten your seat belts and put your tray table up because we are going to travel together, virtually, all around the globe. My upcoming blog posts will feature the brilliant, simple, proactive, compassionate, empowering acts of humanity, humility, kindness, beauty, and wonder that I have seen unfolding during this unusual and uncertain time. I’ll try to tie our travels to a good book recommendation related to that destination, as reading is one of life’s simplest and most wonderful of pleasures (IMO!). Please share with me stories from your corner of the world, too!

And, remember, in an emergency oxygen masks will automatically drop down from the overhead compartment. To start the flow of oxygen, take a deep breath and then continue to breathe normally. Although nothing really changes, oxygen is flowing and you will feel so much better. If you are travelling with a child or someone who requires assistance, secure your mask first, and then assist the other person.

And we are off! Next stop: MAUI and the Merwin Conservancy! Pack Moloka’i by Alan Brennert for this journey. Or The Folding Cliffs by The Merwin Conservancy’s W.S. Merwin himself!

Molokai Map

This is our hour to rise up. This is the time to love our neighbors as ourselves (from a safe distance). We need to act, as one – now – to save lives and to avoid totally preventable loss and suffering. Never before has it been possible to do so much for so many with the simple act of staying home. It’s simple, and it’s also so hard. I get that. But it’s completely necessary. Let’s do this. Rally! Rally! Rally #flattenthecurve #stayhome #cometravel(virtually)withme #putyourownoxygenmaskonfirst #whatsparksjoyismysanity #permissiontobehuman