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)

Strong Core

Swimming is one of my favorite things. I used to swim 2 to 3 times per week with a Masters swim program (don’t be impressed, it just means I am old). I was in super swim shape this year right up until, oh, March 10. And then it all stopped.

Let’s face it. During a global health crisis, many things we might love – and even things we didn’t know we loved but suddenly now miss (I am thinking of my kids and how they unexpectedly longed to go to school) – just aren’t a priority. So we shift gears and adapt. Personally, I did more crossfit, and I tried kickboxing and yoga (all on zoom). I made stuff up on my own, rode my bike, went running (sorry, joints, desperate times call for desperate measures). I just kept moving. The school thing is still a conundrum I have not yet solved so I am not going to dive into that one.

Anyhow, it’s summer now, our case count is low, and the ponds are no longer freezing or frozen, so I can swim again. And it feels SO good because I missed it (a lot) and my hamstrings were really, really sore (too many squats? I have no idea, but, as usual, swimming fixed it.)

As I paddle along, I have these moments of philosophical inspiration (oxygen deprivation can do that, apparently). Not only is swimming great exercise, but it has a lot of important life lessons to teach.

When I first got in the water, it felt familiar but my body was like, wait, what the what? Oh, we are doing this again suddenly four months later? And my mind was like, oh my gosh, was that a turtle? It was chaotic and ugly and, at times, terrifying (I prefer my swims wildlife-free). Yet it was also divine to bask in the soothing weightlessness of water again.

Life lesson #1 – It doesn’t have to be pretty; if you love it just get out there and do it (turtles welcome, ideally from a distance).

And then my lower back started to hurt. And I thought, huh, that’s odd. It’s a low-impact sport, after all, which is the whole point in my case. What the heck? So I mentioned it to the friend who I swim with and he said, “Are you tightening your core?”

BOOM! Right then I had this huge a-ha moment. I’ve been told to tighten my core many times before, but then I forget and need a reminder again. Sure enough, as soon as I tightened my core, my stroke became more efficient and less chaotic. I felt stronger, more whole, less floppy. And I realized that having a strong core matters more broadly as well. Sometimes I forget to engage my core in life – too often, really. When that happens I feel blown about by the shifting sands of time and public opinion. I am so non-confrontational that I will adapt like a chameleon so I don’t attract attention or get attacked. It’s a survival strategy (classic, in fact, if you’ve been bullied), just like it is for a chameleon. But in those situations, deep in my unengaged core, I am filled with misgiving, chaos, and confusion. When I remember to engage my core, I immediately feel stronger and more empowered.

Life lesson #2 – Engage your core! Live your values. Find your voice and speak it!

Once my core is engaged, I remember that I am supposed to stretch my body long with each stroke (or as a good friend told me when I got back into swimming several years ago – “You are not tall enough for this sport. You need every inch you can get” 🙂 – which means that the Olympic dreams of my childhood were pure fantasy, it turns out. Glad no one told me that then!). When I consciously stretch my body long, I suddenly realize that I tend to spend much of my life sort of shrunk. There’s a cool inch or two gained if I just stand up straight, or stretch all the way through all of my muscles, especially in my hips and spine. It feels so good to open those joints that mostly spend their time being compressed by my slouch, or by my lack of awareness that I am not reaching, stretching, extending, growing, lengthening. Like in life, a reach doesn’t necessarily feel good at first. And it requires conscious thought to make it happen. But once you start doing it, once you find that groove and stretch yourself, your stroke becomes much more efficient and so much more beautiful. You begin to glide across the water instead of battling against it.

Life lesson #3 – Stretch. Reach. Grow. Stand tall. Glide with the water, don’t fight it.

I can’t talk about swimming without talking about gratitude. Swimming is what brought me back to life after several years mired in emotional and physical pain with my RA diagnosis and my mom’s Alzheimer’s diagnosis. When it was taken away, as with so much else during the height of our state’s efforts to curb the pandemic, I could have been angry or sad. And maybe I was those things a little bit. But mostly I accepted that that’s what needed to be done for the greater good, adjusted my stroke, and found some other way to channel my energy. Now that I am back in the water, I am filled with gratitude – for an accessible pond nearby, for a break in coronavirus infections, for summer, for my health, for the ability to swim. I know this time in the water is fleeting because summer is fleeting and indoor isn’t an option for me until the coronavirus takes its leave of us. So I am conscious of this gift and I cherish this time while it lasts. Which leads me to:

Life lesson #4 – Gratitude is powerful. Live and love consciously.

So many of us spend so much of our lives on auto-pilot, unconsciously moving through the world. We miss so much of the nuance, so much of the good in the simple things this way. The coronavirus has created a unique moment in history (and I am definitely looking forward to it being history!). If we take the time to be conscious and reflective about what’s going on in our world, in our communities, in our lives, it can be an opportunity. This period has pulled back the veil of what we have accepted as normal and revealed so clearly how abnormal, unjust and inequitable “normal” was. I think a lot about the notion that “if you win the rat race you’re still a rat.” Where are we racing to? Is it somewhere we actually want to be? A life we actually want to have lived? And at what cost?

finding-dory-movie

WE ARE THE SOLUTION.

Wear a mask.

BREATHE.

Stay well.

You will be alright.

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

 

 

 

 

 

Lifted Up By Letting Go

This essay was published in the March 2020 edition of Wellesley Living Well Magazine.

Life consumed me in the early years of motherhood: work deadlines were shoved into limited daycare hours; the frequent illnesses of childhood regularly upended any non-parenting endeavor; time for grocery shopping was elusive; exercise mostly consisted of bouncing with a baby and “lifting” out of the crib. During those demanding and isolating pre-school years I was diagnosed with Rheumatoid Arthritis (RA) and my mother with Alzheimer’s. I found myself wrestling with Pico Iyer’s question, “How to hold on to the things we love even though we know that we and they are dying. How to see the world as it is, yet find light within that truth.”

At the time, I struggled to find hope. The intensity of these divergent and demanding caregiving needs galvanized me to pay attention and not miss this time – any of it – while also laying heavily in my lap a palpable burden. Without exercise, I had no outlet.

Fast forward a couple of years and I found myself joining Crossfit Launchpad. CrossFit, it turns out, is more than lifting weights and intense cardio. The surprise – and what keeps me going back – is the community. Trust me, I never thought I’d say that – a gym that’s a community? But that’s what it is, and it is part of the formula of endorphins, nutrition, and a support system that helped restore my balance, clarity, and health.

Not only is my RA in remission now, but my Crossfit community has also helped me bear the heavy weight of caring for my mom. Outside the gym we gather monthly to make baby blankets for Boston’s Family Nurturing Center. I mentioned that a large version of these blankets, with their taggie ends and soft texture, would be ideal for Alzheimer’s patients. Without missing a beat, the group decided to make blankets for my mom. It would never have occurred to me to ask. My go-it-alone, never-be-vulnerable internal driver flared. I couldn’t have people spend their time doing that for me. I declined. They insisted. Eventually I let go.

And, what happened? I now have two soft, beautiful blankets for my mom. By allowing help, I was able to focus on other things my mom needed. By letting go, I allowed the number of hands who created those blankets – the number of people who touched my life – to grow exponentially. This turned everything I know about asking for help on its head – helping me can help you, too?

Life is an incredible teacher. Hope is restored in the most unexpected ways. This is universally true, if you are open to seeing it. My truth, this journey, has tested me with its bleak mercilessness. As in the depths of winter, I have at times been lonely and cold, wondering if it would ever end. And yet, I wrap my mom in her blankets and this act of support and community warms my soul. The light in my truth is all the people who have held my mom and me along the way. The smallest gift, the heartfelt gesture, the simple acknowledgement that the journey isn’t mine to walk alone, matter. Helping other people – and letting other people help you sometimes – are powerful antidotes to lost hope. Even on the darkest days there is light. Also, exercise helps.

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

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