CrossFit, Community, and Alzheimer’s

Like everyone, there are days when I just don’t want to workout. I spent years not getting much exercise at all beyond bouncing with a baby and “lifting” out of the crib. I was consumed with life – or, more accurately, life consumed me. Besides work deadlines that I shoved into limited daycare hours, the frequent illnesses of young children single-handedly and regularly kiboshed any non-parenting endeavor. Having food in the house, ideally and often elusively meant for the preparation of healthy meals, was one of my bigger parenting challenges. Woven within those typical life-as-an-adult constraints, I lived with bouts of intense physical pain thanks to my then newly-diagnosed and erratically behaving Rheumatoid Arthritis. My mother’s diagnosis with Alzheimer’s amid the fray and buzz of a mother’s life with young children galvanized me to pay attention and spend as much time with her as I could squeeze in, but also laid heavily in my lap a palpable and early burden as well as long-enduring grief. Needless to say, I couldn’t find room in a day to exercise. And then the lack of exercise became the new habit, and it didn’t bother me anymore.

Which is sort of true. In hindsight, the truth is that while I had stopped feeling the yucky bloatedness that I used to feel when I hadn’t exercised for a couple of days, quietly and surreptitiously, toxic, emotional poisons that no longer had an outlet built up inside me. I never realized before this period that exercise provided a means to channel and process whatever was on my mind. I’d go for a run, burn out all the jitters, find calm and perspective, regain my center, and go on with my life. Without exercise, there was no way out for the very real and demanding worries I was facing.

During those years, I was scared, sad, and totally overwhelmed. Parenting in the pre-elementary school years can be isolating as is. Adding a couple of chronic diseases and sandwich generation caregiving to the mix engendered an emotional disaster zone (even for a pragmatic, organized realist). There were no clear answers: for parenting or RA or Alzheimers. Both RA and Alzheimer’s have these vague derivations and prognoses. No two patients are exactly alike; there is no timeline or likely outcome for either. Well, I suppose for Alzheimer’s there is a likely outcome, but there is no roadmap, no treatment plan, and definitely no cure. All this to say, it would have been really good for me to have an outlet and some exercise.

Fast forward a couple of years, and I found myself joining CrossFit Launchpad. It turns out that CrossFit is about much more than exercise and nutrition. The real surprise and what keeps me going back is how much CrossFit is about community. I know, a gym (in CrossFit lingo, a “box”) that’s a community? You are thinking, “What the ever-living (sugar-free) Koolaid are you drinking?” Trust me, I never thought I’d hear myself say those words. But, that’s what it is, and it is part of what has helped me to recognize myself and my life again. All of my responsibilities remain the same. And yet I am grounded, clear-eyed, and less likely to spend an entire workout (or an entire day) near tears. That is partially attributable to exercise, but also to my community. For me, place is all about the people. If I feel connected to a person, I feel connected to a place. It’s the people that keep me coming back.

In addition to running workouts, my CrossFit coach, Ronda, organizes outside-the-box events, including monthly baby blanket-making gatherings for the Family Nurturing Center (FNC) in Boston. I mentioned to her that I was hoping to make a large version of the baby blankets for my mom some day when I had time. With their taggie ends and soft texture (almost like a large twiddle muff), I thought the blanket would be wonderfully soothing as my mom becomes more cold-sensitive, tactile and fidgety. Without missing a beat, Ronda said, “Great idea. We’ll make blankets for your mom.” My jaw dropped. It would never have occurred to me to ask. My go-it-alone, do-it-yourself, never-be-vulnerable internal driver flared. Guilt and shame consumed me. I couldn’t possibly have people spend their time doing that for me. No. I declined. She insisted. Eventually I let go. For once, I let go.

And, you know what happened? I had two soft, beautiful blankets for my mom by the end of that day. I look at those blankets and I see both cozy comfort and love. By allowing help, not only was I able to focus on other things that I needed to do for my mom, but it seems I allowed my community to do something to show their love and support. The number of hands involved in creating those blankets grew exponentially by my letting it go, and simultaneously the number of people whose lives touched mine and my mom’s grew as well. Those involved in that blanket-making session told me afterward that they were happy to do it, and that seeing the pictures of my mom wrapped in her new blankets made them feel good. This turned everything I know about asking for help on it’s head – helping me can help you, too?

Life is an incredible teacher. Hope is restored in the most unexpected ways and places. This is universally true, if you are open to seeing it. Personally, here I sit, as fall descends around me, reflecting on this touching moment and the broader lessons it has to teach. The brilliant vermilion, bright orange, deep purple, golden yellow, and amber-hued leaves of yesterday are scattered in mushy, brown, wet clumps on the pavement, a recent storm having wrested them from their branches. All around me life is closing up shop and preparing for the dark, cold, and barren days of winter. And, yet, I wrap my mom in her new, warm blanket and simultaneously I am wrapped in love and hope. Pico Iyer writes, “Autumn poses the question we all have to live with: 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.”

My truth, this journey, has tested me with its bleak mercilessness. Like the depths of winter, at times it has felt like it would never end. But the light in this truth is all the people who have loved my mom and me along the way, and held us in the light. The smallest gift, the heartfelt gesture, the simple acknowledgement that the journey isn’t yours to walk alone, matter. Genuine connection is the most important aspect of our humanity. Helping other people – and letting other people help you sometimes – are powerful antidotes to lost hope. Help each other. Be kind. Even on the darkest days there is light.

The Warning by Jenny Joseph

When I am an old woman I shall wear purple
With a red hat which doesn’t go, and doesn’t suit me.
And I shall spend my pension on brandy and summer gloves
And satin sandals, and say we’ve no money for butter.
I shall sit down on the pavement when I’m tired
And gobble up samples in shops and press alarm bells
And run my stick along the public railings
And make up for the sobriety of my youth.
I shall go out in my slippers in the rain
And pick flowers in other people’s gardens
And learn to spit.

You can wear terrible shirts and grow more fat
And eat three pounds of sausages at a go
Or only bread and pickle for a week
And hoard pens and pencils and beermats and things in boxes.

But now we must have clothes that keep us dry
And pay our rent and not swear in the street
And set a good example for the children.
We must have friends to dinner and read the papers.

But maybe I ought to practise a little now?
So people who know me are not too shocked and surprised
When suddenly I am old, and start to wear purple.

Purple is the color for Alzheimer’s awareness. Purple also happens to be one of my favorite colors. You have been warned!

Check out related articles below or on my Resources page:

Is Alzheimer’s Diabetes of the Brain?

UVA Brain Discovery Could Block Aging’s Terrible Toll on the Mind

How Biogen Salvaged Alzheimer’s Drug After a Costly Failure

 

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