Don’t Freak Out. But Also, Don’t Be Cavalier: A Corona Survival Guide

I AM the vulnerable. You wouldn’t guess it to see me bouncing around on a daily basis in my Energizer Bunny way, but it’s true. I am a healthy, young (ish!), active mom, daughter, wife, sister, friend, employee, and athlete. But I also have an autoimmune disease.

Whenever you are washing your hands extra carefully or extra often, considering whether or not to cancel or attend a big event, wondering if this is all overblown, it’s not just the elderly or some hypothetical distant someone that you are protecting. It’s also people like me, the mom who lives just around the corner, who volunteers at the school, who you see cheering at the sporting events. There are more of us than you might realize, and this is a good time for everyone to understand that. Not because we need your sympathy or pity. But because we need your solidarity. Because the reason I can be an active, healthy mom and athlete is the boat load of immuno-suppressant drugs I take. I am in my 40’s but for over a decade this has been my norm:

RA Meds

You know when they review your medications when you go to the doctor? We run through my lengthy list every time and the conversation nearly always ends with the nurse saying, “Anything else?” and me responding, “Isn’t that enough?” I mean, for real. Don’t even get me started about how many doctors appointments I have in a year or how much I pay annually in co-pays for medication even though I have health insurance. That’s for another time.

For now, I am here to tell you that immuno-compromised people worry every year about the flu and infection in general. And every year I dutifully get my flu shot, as does my family, mainly to protect me. And then we go about our lives like normal. Similarly, when I went to Guatemala last fall, before I left I had to think through carefully with my physicians the potential implications of my immuno-compromised state. I got 4 vaccines and filled 2 prescriptions for antibiotics to bring with me in case I got sick while there. No one else I was traveling with needed anything. But I went (and, incidentally, I loved it!). I live my life knowing I am generally at higher risk than others, aware of the implications of both my disease and my medications, but I choose to keep on stretching and living.

I say all this so you understand my reality. It’s a reality I have mostly accepted. I live a pretty normal life, and I am grateful for that. I have learned to work with the cards I have been dealt.

In light of all that, I have been taking this Coronavirus, I think, pretty well overall. I am aware of what’s happening, but have been measured in my response. I have not been panicking or buying shelves-worth of Purel. I did not completely stop socializing or obsess over every new headline. My heart beats at a fairly normal rate, day in and day out.

But early this week my doctors advised me, for now, not be on a cruise boat, a commercial airline, in a crowd, or to have visitors who have flown recently. They are taking this seriously and, in turn, so should I.

I’ll admit that my blood pressure and heart rate increased rapidly during that doctor’s visit, as the realization of the seriousness of the situation and my vulnerability to it dawned on me more fully. While my vital signs returned to normal shortly after, it took me a while to notice that I have spent the last couple of days feeling like I am already sick. By that, I mean, that I started to think more like an incident commander, to go into prevention and protection mode, to dwell more on the news. I have been lethargic and blue, unfocused and distracted, my head spinning with headlines and what if scenarios fast-tracking through my mind. Basically I forgot to live.

And then I caught myself. I woke up and realized this is going to be a marathon and I cannot exhaust myself in the first couple of miles. It also occured to me that I could be an excellent fiction writer because I am constantly making up narratives that just are not true! It’s called anxiety. And instead of allowing my anxiety to come along for the ride, I let it drive for the last couple of days. I started contacting puppy breeders so I won’t be alone in my isolation, for goodness sake. This is not rational behavior (though it was a lovely divergence). Puppies for everyone!

Don’t you feel better already?

In all seriousness, I suspect – I KNOW – that I am not alone. Anxiety buttons are being pushed the world over. The illusion that we have control in this life has been de-masked. We never did have control, folks, but now we can’t even pretend. So we control what we can: we buy all the Purel on the shelves and we read the news ad nauseum and we perseverate over what to do. But we have no more control over this after all that than we did before. Really. We can prepare, but we also need to make room to sit with this uncertainty and acknowledge it. And, then, deal with the cards we have been dealt. This is how I plan to do that:

  1. Seriously, wash your hands and wash them well (how to video here);
  2. Don’t freak out – it doesn’t move the needle one bit to do so. Take a deep breath, or, better, a couple (try 5 deep breaths every hour). Sit with the discomfort. This is a great time to get really good at accepting that we can’t hide or fix or control everything (or, really, anything). Sometimes the best thing to do is to acknowledge that and sit with it. Meditation is a good way to do that. But so is taking a deep breath and recognizing anxiety for what it is and not letting it drive.
  3. Limit yourself to checking social media and the news only once or twice a day; trust me, if something really important happens in the interim, you will get the deluge of texts and phone calls or see the helicopters overhead that will clue you in that something happened. Otherwise, it’s just an anxiety mob feeding on itself.
  4. This virus is clearly an equal opportunity event – anyone is as likely to get it as anyone else. Don’t be a racist or an asshole or a racist asshole and make negative assumptions about people. This is good advice in general. But, in particular, Chinese food, Corona beer, Chinese people, and immigrants of any stripe have nothing to do with whether or not you are going to get sick. So chill and show some humanity and compassion.
  5. Speaking of racism, take a minute to consider how devastating this virus could be – WILL BE – in places without strong medical facilities and protocols.
  6. Speaking of racism two – there is a massive locust swarm happening across parts of Asia and Africa right now. Thousands (possibly millions) of people WILL die from starvation as a result of this, and ever more will emigrate toward Europe in an attempt to save themselves. Have you read anything at all about it? Because a ton of human beings are dying already and it ain’t from the coronavirus.  Locust Swarms Put Millions at Risk Across Asia and Africa; Hundreds of Billions of Locusts Swarm Across East Africa
  7. There are great lessons we can learn from this – for starters, we are all living creatures, human beings of all colors and types, and we are all a little anxious and concerned about ourselves and our loved ones. Compassion, kindness, and caring for and about something bigger than ourselves are values we should espouse ALL THE TIME, not just in times of crisis; but now is a great time to up the ante.
  8. Words matter and so does your mindset. For example, use the word distancing instead of isolating; I kept saying I was isolated and it made me want to buy a puppy; distancing is less weighty.
  9. All of us are in this together, and many are uncomfortable about the situation. Hold that worry, concern, fear, sadness in the light and honor it.
  10. Maybe try just half a cupcake instead of eating the whole thing when you feel the need for comfort. I’m not going to tell you that I ain’t been panic eating. Sugar is still bad for you, but I am not going to judge.
  11. Consider the greater impacts of your actions – this is a good idea in general, but specifically now. It’s not all about you, nor should it be.
  12. For now. For now is a great phrase. Because difficult things are easier to bear when there is a perceived finiteness to them. For now gives the sense that things are temporary. And, it’s true, we will learn more about COVID-19 and eventually this crisis will be in the past. We need to take it seriously NOW, for now, and we need to show compassion and urgency to get there without too many lost lives along the way.
  13. If you or your kid is sick, own it. Don’t pretend that Motrin or Tylenol masking the symptoms is a reasonable choice for carrying on with your day. Sending sick kids to school or going to work sick isn’t a good idea under normal circumstances. It is a very bad idea right now. I get that work beckons, but, damn, that’s just wrong on so many levels.
  14. Don’t buy a puppy or any other living creature on a whim. Also good advice beyond a pandemic.
  15. Seriously, wash your hands.

Check out my Resources page for more information.

Drink Coffee
This has literally nothing to do with anything but it makes me smile

 

 

 

 

 

I Ran Two Marathons in One Month

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

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

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

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

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

 

 

 

 

Can Your Skin Cream Transform Your Mind?

“Our teachers weren’t kidding when they said we’d take lots of walks and that people in the villages are very content to do nothing. No plans, nothing. I thought I’d handle that well because I, too, like to do nothing. But I only really do nothing for brief interludes during the day, in between finding something else to do. When I sit and knit, read, write letters, make necklaces, etc., I consider that pretty much doing nothing. Here they just sit. It’s not an easy lifestyle to adjust to.” – me, March 2, 1996

I had to laugh when I read this journal entry from my village homestay in Madagascar. In the U.S. we live in a culture that is so go-go-go that I didn’t even recognize that my doing nothing was still doing something. That was true 20 years ago, and it remains true today. I just happen to be more aware of it now. Doing nothing and remembering to breathe are literally things I need to practice. Five minutes sitting still without my mind wandering to a hundred different items on my to-do list is impossible. Truly. Try it and you’ll see it’s not just me! “Monkey mind” is the Buddhist term for the incessant chatter and sense of unsettledness in one’s mind. It looks like this:

Monkey Mind image
This is what a monkey mind looks like; illustration by Lilian Leahy

That phrase evokes images that just crack me up, quite like this Lilian Leahy illustration. The ring-tailed lemurs shown in the following photos that I took in Madagascar also crack me up. They are very Zen. This is NOT what having a “monkey mind” looks like.

When I was diagnosed with Rheumatoid Arthritis, and finally accepted it (that’s another story altogether), I considered all options for how to live my healthiest life given the cards I had been dealt. Besides doing all the regular stuff my doctor asks – take all the prescribed medications, see her every three months, have bloodwork done at the lab regularly, get exercise – I wondered if there was anything else that would help. I had two very little kids when I was diagnosed. And I love leading a busy and active life. I want to be as healthy as possible and have left no stone unturned in my quest.

Having RA has taught me many, many philosophical but also practical things about life. My diagnosis and subsequent eventual acceptance was like a massive 2×4 smacked across the head saying, “ummm, hellooooo, for real, you need to pay attention.” It has taught me about cherishing the little things in life, and not taking any day or any thing for granted. It’s like a constant anatomy lesson – yes! that pain I was wishing could be solved by a root canal is in fact a jaw joint (too bad for me). It has taught me about control, and that it turns out I am not in it. And, it has taught me about how stress and my monkey mind can be implicated in RA flares and general feelings of being overwhelmed.

After a bit of research and a lot of finagling of schedules, five years ago I enrolled in an 8-week course at the Benson Henry Institute for Mind Body Medicine (BHI) at Massachusetts General Hospital. This course introduced me to the term “monkey mind,” not to mention to the fact that I have an extremely active monkey. You may have already figured that out from the sheer breadth of subjects I write about. I am not exactly focused on one thing, rarely one thing at a time, and I am passionate about many!

For the record, I am not one to buy into the concepts of meditation and relaxation easily. The term self-care makes me cringe, as do the words snuggle and cuddle (but that’s an aside). Bluck. All that touchy-feely stuff gives me the shivers. So you could say that I entered BHI skeptical at best. But I figured since I had devoted my time to this, I might as well go all in and have an open mind (pun intended).

Did my life change overnight and was my RA banished for good? No. It takes a long time to learn new habits, and the brain tends to tack back to its well-trod neural pathways. It takes effort and practice to become aware of the mind’s motivation. For me, sitting still and doing nothing were bad words. My inclination is still more towards whirling dervish than calm Buddha.

But I learned an incredible amount about how important the act of doing nothing and sitting still is for the brain. It’s a biological reality that is now backed up with MRI studies and scientific data. The scientifically validated benefits of mindfulness include: decreased stress; reduced symptoms associated with depression, anxiety disorders, pain and insomnia; an enhanced ability to pay attention; and a higher quality of life. Don’t believe me? Check out Harvard researcher Sara Lazar’s TEDx talk on the effect of meditation on the brain.

Or Dan Harris, the ABC anchor who had a panic attack on live television that led him to meditation and eventually to writing the book 10% Happier.

Personally, my most notable takeaway from the course happened on the first night. The instructor flashed a powerpoint slide that read, “If you can’t make room for exercise now, you’ll have to make room for illness later.”

I was already making room, lots of room, for illness. But I wasn’t prioritizing myself. AT ALL. This one quote completely changed the way I viewed my calendar and what was and was not negotiable on it. I began swimming and made it a permanent item on my calendar. I trained myself to take a deep breath every time I come to a stop sign or stoplight. I downloaded a million mindfulness apps (still working on pausing long enough to actually use them).

My message to you is this – skin creams may help with wrinkles and dry skin, but meditation enhances a wrinkled mind. 

Breathe. Deeply. And often. It helps.

Serenity Prayer

Grant me the serenity to accept the things I cannot change,
Courage to change the things I can,
And wisdom to know the difference.

Reinhold Neibuhr

Rude Awakening

I know a thing or two about pain.  Emotional and physical.

Any woman who has had a baby knows about breathing through pain.  And I am here to say that I am absolutely as imperfect as they come when it comes to breathing through anything.  I get so angry and frustrated and want to just wallow in my misery sometimes.  Very graceful.  Very zen.  I am more of a just-give-me-a-to-do-list-and-I’ll-do-it kind of person.

As with most new parents, we didn’t sleep much those first few months.  Our baby was fussy and needed to be held all the time and, being the worried new mom that I was, I spent what little “free time” I had researching what I was doing wrong and the many ways I may never sleep again.

I am from a family that says things like, “I am not sick, I just don’t feel well”.  We push through and don’t complain.  So when my hands started to hurt about six weeks postpartum I chalked it up to constantly holding a heavy baby and exhaustion.  The pain would come and go, and time was a very slippery and elusive concept in those days, so carpal tunnel syndrome seemed like a legitimate possibility.  Sure some days my legs kind of ached, too, but that’s what atrophy feels like, isn’t it?  I distinctly remember hobbling down the stairs to the backyard saying to my mom, “I feel like I am getting worse and not better.  Is this normal?”.  Then one day my knee visibly swelled up.  Having barely left the house in months, let alone done anything active enough to cause an injury, I finally couldn’t find an answer for that one.

I was diagnosed with Rheumatoid Arthritis (RA) two weeks later.  Cue record scratch.  Arthritis is for old people, isn’t it?

I’d love to say that I went home from the doctor with my chin held high and soldiered on with zero self-pity.  Ha!  No, no, no. There were some serious bellyaching moments and I definitely asked “why me” more than once.  I was shocked, almost offended, that this could happen to me.  What the heck did I do to deserve this?  Very zen, like I said.  For me, RA meant one big old Rude Awakening.

Pro tip – don’t google your newly diagnosed disease when you get home from the doctor.  It doesn’t end well.  Ignorance truly is bliss.

With the words “severe prognosis” ringing in my ears, I was sent home to begin to ween my baby off breastmilk so I could start on some pretty powerful medications to try to change the course of the disease.  I remember calling my OB and asking for advice on how to ween a baby, explaining what had happened and why in this age of “breastmilk is best” pressure I was stopping.  The nurse I spoke with, thank goodness, was so compassionate.  I will never forget her kindness and her words, “You did such a good job”.  I needed to hear that. It’s very lonely to be sick, have a brand new baby with all the societal judgment that comes with parenting, and your choices aren’t yours anymore.

That was part of the emotional pain of RA for me. The diagnosis, whether you have a little baby or not, brings a flood of fears and unknowns. Google told me that 1/3 of people with RA are so disabled after five years that they can no longer work; I was denied short-term disability; the medication side effects and disclaimers were terrifying to read. The disease itself is an unpredictable roller coaster ride. Some days are better than others, some medications work well, others make you nauseous. It’s all trial and error. No lists.

And the physical pain? Well, it’s like nothing else, quite. A broken arm? Maybe. Childbirth?  I guess so. It’s intense and deep and unrelenting. 40mg of prednisone and 800mg of ibuprofen wouldn’t even touch it some days. I couldn’t lift my baby out of the crib because I was cradling my arm so gingerly. Some days I couldn’t walk. I never knew where the pain would go next, which joint would be affected. Hips, shoulders, jaw – those are the worst. You can work around a hand or a finger, but it’s impossible to eat or even smile when your jaw joint is inflamed. I begged my dentist to tell me it wasn’t RA and I just needed a root canal. Anything, like I said, for someone to just fix it.

I have tried to figure out what triggers my flare ups.  I cut out sugar and caffeine and alcohol and gluten – pretty much all joy – and it made no discernable difference except that I was more miserable and now high maintenance as well. I have submitted myself to science and participated in pain studies. Mostly I learned that I have a high tolerance for pain and that ice is my friend. I have no idea why some days are better than others. Remember how I said that I like order and a nice to do list? Yeah, RA doesn’t work like that.

It turns out that that kind of checklist mentality, where if you just check the right boxes you are in control, is a false premise. That remains a disappointing life lesson for me. But I am working on it.

Long, long story short, eventually the meds did their thing and my RA went into remission. For the time being, I don’t have any pain and haven’t had any permanent damage to my bones or joints. That in and of itself is a miracle. Truly. I’ll write a whole post on how different the outlook is for RA patients who were diagnosed after methotrexate started to be used to treat RA as compared to previously when all that could be done was attempt to manage the pain.

It took a lot of time, a lot of deep breathing, thousands of laps in the pool, sometimes screaming underwater, sometimes also crying into my goggles, for all the emotional toxicity to work its way through my system.  But eventually, that piece settled, too.

Now I swim in a masters swim program. I participated in a triathlon a year ago, something that was absolutely unimaginable only a year prior. I go to crossfit. I traveled to Guatemala! Hope abounds.

I am tempted to say that I conquered RA, that I win. But that would mean that I haven’t learned anything from all of this. I have been around the block enough times now to know that my RA and I are just in a temporary place of peace, and that it will inevitably come back. And when it does, honestly, it will be really hard for me. I don’t expect that my despair will be as deep, but I’ll surely still long for that elusive checklist and the return to normalcy. Now I know, though, that I CAN come back, that RA is just one part of my story, and that I am not less than because of this. As Dory says in Finding Nemo, “Just keep swimming, just keep swimming”. Seems like some pretty darn good life advice. One day at a time. One breath at a time. One lap at a time. One foot in front of the other.

Post Triathlon
Post Triathlon with my “I have RA AND I am an athlete” shirt on

Parting is Such Sweet Sorrow

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

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

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

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

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

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

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

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

Some days you need a little time to breath

It turns out that setting up a little bloggy-blog takes a bit more time and has a steeper learning curve than maybe would have been expected.  I spent most of my “writing time” yesterday on formatting and figuring out this blog platform situation (oh, yeah, and chaperoning a second grade field trip).  So I am going to take my own advice and step back for a minute and take some time today to breath and catch up.

For today I am posting a few pictures of the beauty that is Guatemala as well as one of my favorite quotes.  Stayed tuned for more on Colegio Impacto/Maia and Guatemala; on community and friendship; on more local stories of hope and courage; on my personal reckoning after a diagnosis with Rheumatoid Arthritis; on my journey in caring for a parent with Alzheimer’s.  But that’s all for another day…

The Guest House by Rumi

This being human is a guest house.
Every morning a new arrival.

Pink flowers
Flowers of Guatemala

A joy, a depression, a meanness,
some momentary awareness comes
As an unexpected visitor.

Welcome and entertain them all!
Even if they’re a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still treat each guest honorably.
He may be clearing you out
for some new delight.

The dark thought, the shame, the malice,
meet them at the door laughing,
and invite them in.

Be grateful for whoever comes,
because each has been sent
as a guide from beyond.

Fisherman La Laguna
Fisherman on Lake Atitlan

 

Day of dead landscape
Day of the Dead, Sumpango