Frailty (Part 2: Illness and Identity)

Sometimes it’s hard to look back and pinpoint exactly when things started to fall apart. My guess is, it was a slow progression… but I remember sitting on the bed talking to my husband and crying because I knew something was wrong with my health. It was a gut instinct.

Things started in earnest in 2011. Before my feet stopped functioning, I had a full-body systemic allergic reaction that left me with hives and urticaria from head to toe. Several rounds of steroids solved it, but I was left with no answer as to why it had happened. Then my feet go so painful it was difficult to walk. Then I got migraines every day. Every. Single. Day. And chronic pain set in. I felt like I had arthritis… everywhere.

I saw oodles (literally oodles) of specialists, had a gazillion tests run, and continued to get worse. No one could find anything wrong. Many people offered prescriptions I refused to take. I stopped working full time. I put the idea of going back to school on hold. This was 2012. And I would sit on the bed and cry because I knew in my heart I was sick and no one could tell me why.

Turns out it was Lyme. Or at least, that’s the best guess because the tests they run in the Midwest consistently turn up negative for me. But I am a textbook case - including a bull’s eye rash from 2007 that no one took seriously (we were told it was tick fever and that my flu-like symptoms would pass). 

There have been a lot of weird health issues between 2012 and now. It seems like something new pops up every year - some new kind of bodily hiccup that requires a change in routine or medication or diet or treatment. It’s been a lesson in flexibility. Adaptation. Patience. And a lot of letting go.

Because the hardest part has actually not been the day-to-day experience of being ill. That comes and goes… and I liken it to being in a dark room blindfolded while things fly at your body… or riding a roller coaster with no sight so that you don’t know what’s coming next. It’s not constant. It ebbs and flows… and each change becomes something you eventually recognize and normalize. I seem to be good at that. What has not gotten easy is making peace with the new identity these changes have wrought.

My concept of self has shifted immensely over the past 6 years. I am no longer a dancer. No longer someone who can remember anything - who never has to write things down. I am no longer 100% sure I will be able to figure out anything thrown at me quickly and flawlessly. Nor that I will be able to handle highly stressful situations - or even situations that contain lots of people and unpredictable variables - without my system going haywire.

I move through life more carefully and more cautiously. This is not necessarily bad. But it’s new and not yet something I consider it naturally be synonymous with my concept of who I am. I still push very hard. My will is intact and it’s enabled me to remain positive (mostly), to see this as a learning experience, and to stay present despite the sometimes scary or uncomfortable surprises that surface.

But I am different. The way I know myself is different. And it’s still hard to fully accept that the “old me” is likely never coming back - that even were I to regain a sense of wellness, I still won’t be able to go back to where I was before all this started. That’s a weird, hard, stupid thing to contend with - but one that every single person with chronic illness must wrestle.

May you value your abilities and blessings in the present moment. May you find acceptance along the unexpected pathways life springs at you.

Frailty (Part 1: The Body)

"It's hell getting old."

My grandmother used to utter this phrase throughout my early adolescence... all the way through my twenties and up until the time when her dementia had taken such hold as to make personal observations on the world more disjointed and fearful.

I understood what she meant; and I instinctively knew (even before my counseling training years later) that it communicated a very important component of her worldview and cognition/perspective on her aging. She was tortured by getting older. She found the journey rife with disappointment, fear, pain, grief – and ultimately approached it as something to fight against with an incredibly stubborn yet sad sort of acceptance. She believed she had no control, but rather had been consigned to a process of slow and steady devolution against which she was trapped and inert.

So I got it—as an outside observer and loved one who tried to stay as patient and present as possible, all the way up until the end. But I didn't really understand the true weight of that statement until this past year. 2012 was the year of bodily revolt; a year that began a deep questioning as to my livelihood, my sense of self and identity, my ability to care for my family, and a fear of the future.

I had always considered myself healthy. I had a early adulthood filled with physical performance, dance, an active lifestyle, and the complete absence of worry that I might ever be physically impeded. I had a relatively successful pregnancy, and our daughter was born healthy.

And then it all shifted. Not necessarily suddenly, but in the distorted-over-the-shoulder view of hindsight, it felt like falling down a hole. A deep, dark hole with no discernible bottom.

It began with my feet. The anchors of stability I always took for granted. With increasing pain, they stopped working for me... became so tender I could not walk for more than 500 feet or so, let alone dance or teach others to dance. I had to buy all new shoes; got fitted for orthodics; rearranged my schedule and routines to account for limited mobility; went to PT twice a week for months on end, still waking up each morning to gingerly hobble out of my room and attempt to begin my day on feet that did not feel like my own.

This was the lesson: An opportunity to relearn the concept of "my," of permanence, of fixed identity and self-description as truth. What's remarkable is that I began this post in 2012, and I'm finishing it in 2017. The lesson continues. The journey has morphed and twisted and gone places I could not have anticipated... but the lesson continues to be one of making peace with frailty and accepting impermanence. Particularly when it comes to an aging (and it turns out, ill) body.

May your frailties bring you revelations. May you make peace with groundlessness.

Confidence

I have been thinking a lot lately about confidence. Not only throughout the process of my training, but also within the context of my counseling, teaching, and volunteering work, I've seen so much how self-esteem, self-efficacy, and self-worth are immeasurably linked to our perception of self, others, life, happiness, value, accomplishment, etc.

So often I think most of our day-to-day conflicts and misunderstandings stem from an internal sense of frailty - a personal haziness that leads to interpersonal confusion and disconnect. My goal, lately, has been to be more mindful of my insecurities - which is linked to being mindful of my ego - because they are two halves of the same coin.

And so, I've been embracing my smallness while also acknowledging (or rather, learning to acknowledge) my greatness as well. Sort of a strange balance to strike, really. An odd little dance with lots of critical, self-chatter that has to be either ignored or redirected... whilst trying to give my sense of self-worth an ongoing pep talk like some sort of best friend or protective older sister.

This came up, in large part, due to the death of my cousin (more like an aunt) last fall. She was someone who made no apologies. She was a very genuine, honest, and strong female - her directness in striking contrast to her southern upbringing. I always had such admiration for the way in which she was true to herself - even if it meant bucking tradition or common perception. She was generous in the way she wanted to be. Loving and kind on her own terms. And patient with her own faults.

For whatever reason, poetry often helps me navigate my grief. And so this poem is for her:

Don't Call Me a Lady
For Pru

Girl, stop hunching your shoulders
as if you have to apologize for your existence.
Stand up tall, look them square in the face,
and if you want another cookie
damn well go ahead and take one.
Just remember to say please and
thank you (and smile only if you mean it).

Young lady, don't waste your time on
someone who can't treat you with kindness.
He may not fawn all over you, but he sure as hell
better know what he's got when he looks at you.
Hot shots are like dandelions: vexing yet plentiful.
A good man is more important than a pretty face,
and well worth the wait of a few broken hearts.

Little mama, I can tell you haven't slept.
Sit down and rest; you don't have to hover every second.
Your child won't know when to stop unless
you show her; won't understand limits
if you place none on yourself.
Wipe those tears, quit your whining, and remember:
Life moves at the pace you set.

World, don't call me a lady.
I have no interest in being pretty or refined...
in making nice and staying quiet.
I will kick up a fuss when it serves me to do so;
I will not bow my head to anyone.
Speak my name; throw back your shoulders.
I have no cause for regret.

Action Monday #2 - Commitment to Greening

Practice, or intention, seems so much to be about making a choice. Committing to a particular course of action and then mindfully carrying out whatever it is you've decided to make the object of your focus.

I suck a little bit at commitment. Not in the traditional sense. I am faithful to my husband; we've been married nearly 8 years. We've owned two homes and poured sweat equity into each space. I pay my taxes. I clean my house every week. I am a dedicated mommy. I finished a graduate degree. We have a happy and healthy family dog.

But in each of those examples (and many others not listed), there is a gap between the full scope of my intention and the reality of my actions. I fail. I falter. I don't live up to my expectations, and I don't always give every force of my effort in every moment.

Maybe that's normal. I don't know. But for me, it provides the foundation for always wanting to do better. For feeling like there is something lacking in my commitment because there is inevitably some way in which I hold myself back from full participation in the world.

In a very mundane way, this can be applied to my inability to fulfill my intention to live greener. To be fair to our current efforts: we compost, we recycle, we reuse and pass things on. But it's yet another area wherein my actions fall short of my goals. I could be doing so much more.

I've been talking about green cleaning for years now—keep saying I'm going to do it. Research, and read up, and make plans... but I've yet to actually commit to making my own cleaning products or reducing our use of paper goods (napkins, paper towels, tissues, etc.).

So! Two action items I will commit to this week: 1) buy cloth napkins; 2) make an all-purpose cleaner for the kitchen and bathrooms and try out the baking soda method on the tub.

The inspiration and little push I needed came in the form of a post by a friend, Rachael Nevins @ The Variegated Life, and a link from her site that said "I'm Taking Baby Steps."

I am committing to putting these actions into being no later than Sunday, June 17. As of next week, I'll not only be doing yoga 3-5 times per week and blogging at least twice per week, I'll also be cleaning my house with vinegar, water, and baking soda.

To action!!

May you relish your commitments to positive elements of your life. May you commit to actions that inspire you and fill you with happiness.

Transgression

I don't remember when I first learned The Lord's Prayer. My family did not attend church, was not in any way religious... but was very much in support of my learning about various religions and faiths. So I would attend services with my friends—outings which invariably exposed me to new language, new rituals, and new ideas.

It was always interesting to experience an entire mass of people speaking in unison or singing traditional songs. I would marvel at how they all knew these things by heart. Songs and prayers and chants and responses. They just knew what to do.

And The Lord's Prayer was one of those things. I think I learned it, in part, so that I could participate. Not feel so left out. So silent and alone and lost in the hum and buzz of united voices.

My favorite part of the prayer, the one that has stuck with me through what has continued to be a predominantly non-church-oriented spiritual journey, is this:

And forgive us our trespasses,
As we forgive those who trespass against us.

I prefer the "trespass" version to the "sin" version for a variety of reasons. It took me a long time to figure out what this part of the prayer even meant. (When I was younger, I had a pretty literal interpretation, which was - ultimately - confusing. I could only think of lawns.)

My understanding of the concept of trespass, or transgression - both with regard to oneself and others - has evolved quite a bit over time. The trespasses of elementary-aged school children, no matter how bullied or bullying they may be - are very different than those of adults. Particularly once you get married and start to have children.

My capacity to fail has increased as I've gotten older; or rather, those failures have the potential to be much greater and have much wider ramifications than those of my 8 year-old self.

And so I am keenly aware of my trespasses. And increasingly aware of what that capacity to fail means to me in relation to understanding my humanness and my somewhat bumpy journey toward enlightenment, or divinity, or whatever you want to call it. That journey which is so solidly anchored in this process and act of forgiveness. Forgiveness of self and others.

Recently, I have joked with friends about how parenting is really this grand opportunity to keep learning about and addressing one's flaws. It's the ultimate lesson in personal evolution and awareness of failure. You can't help but fail as a parent - and in that truth is an inherent and inescapable lesson... one linked to humility (the good kind), resilience, and compassion.

Being aware of my capacity to trespass - being open and awake to my failures, as difficult as it has been - has stretched the boundaries and pliancy of my capacity to forgive. To be patient. To be flexible. To be more trusting. To be more loving and ready to love.

And it's still a journey. I continue to fail. I continue to strive to do better. But forgiveness seems to be the key, and in that balance seems to be the most valuable lesson.

May you notice and forgive your trespasses against others. May you respond with love through all transgressions.

Action Monday #1 - Commitment to Action

It has been a long time since I last posted. Nearly a full two years (my husband had to point out my initial math error - I originally calculated it as one... it doesn't feel that long, which is nice and also strange). There are many reasons for the long absence, none of which benefit from time or focus in this post.

But I have made a decision! Lately I'm keenly aware of the self-induced nature of my suffering. And I mean that in the karmic/Buddha sort of sense. Suffering. My doing. My creating. My responsibility.

The antithesis, I've decided, is action. At least for today. At least for me.

Not only have I committed to renewing my yoga practice (slowly at home on my bright pink mat with the flower pattern that captures and delights my daughter), but I've also committed to walking every day at lunch when the weather is welcoming. (The honeysuckle in the photo was a lunchtime reminder of happy childhood moments in Midwestern fields and woods.)

This commitment to action has inspired yet another commitment: to begin blogging regularly again.

I miss it. I miss you reading it. I miss my writing it. I miss having to take what is so often a non-verbal, fleeting, vague sense of something flirting with truth... and shape it into a narrative ready to share with others. One that hopefully resonates productively - positively - like a gentle nudge... bordering on a polite shove.

Today I shove myself: Get going, you. Stop being stuck. Commit to action.

May you feel called to purpose. May you feel empowered to act.

Consumption

I grew up in a family of shoppers. My grandmother's home was filled with items large and small: gemstone rings, TV-offer-only Cuisinarts, Coca-Cola collectibles, random flea market tchotchkes, fake flower arrangements, trinkety Walgreens finds, candies and family heirlooms and little kleenex packages and all the items sold on 2am infomercials.

Her favorite quote from my childhood: "Paw-Paw makes the money and Ma-Maw spends it!"

I think she found shopping relaxing, or perhaps elating. My guess was it grew out of her childhood of poverty and her experience of the depression. She was a cupboards-jammed-full kind of woman... finding a sense of stability and assuaging her many anxieties in the process of possession.

What is interesting, however, is the way her behavior then passed to my mother - another shopper at heart. Like my grandmother, my mother (I think) has integrated shopping into her modes of communication and introspection.

We were a greeting card family - a care-package bunch; my mother, I suspect, sometimes uses trips to the store as a form of meditation or solitude... and she communicates her love, in part, through things that resonate, for her, with the frequency of the intended recipient.

I find that much of my understanding and meaning-making when it comes to family, parenting, home-life is linked to a lifetime of shopping. I enjoy window shopping, gift-shopping, grocery-shopping, card-shopping, bath-and-body/decor/artwork/furniture/music, books, and more-shopping. I spend hours on errands that should only take minutes, and I find myself fighting the urge to buy my daughter something on every trip. So that she will know I am thinking of her. That I love her. That she is important to me.

Even though my relationship to consumption of goods has changed in the last few years, I still find myself drawn to the act of buying... of selecting and owning and carrying things... as an emotional touchstone. I go to the store when I'm sad. I sometimes equate my sense of self with the things I possess. I wish to believe (if I am honest with myself) my love can be communicated with a thing - because I so often fail to adequately communicate my heart through my words and deeds.

Consumption is a funny thing when you begin to really notice it... a sort of integrated and inescapable thread that runs through infinite aspects of our daily lives. It's so ingrained in our culture - in our senses of self.

Food, clothing, cars, homes, media, technology, electricity, gas - necessities and luxuries and everything in between. It is such a wide spectrum along which we tread, sometimes it's hard to know whether we are filling a need that is real or one that is an illusion.

As I seek to become more aware of my relationship to consumption and to consider the legacy I will pass on to my daughter, I have started to seek out what might best be described as a sense of insatiable hunger. It is the empty aching longing of the hungry ghost... and when I am awake to it, I notice it showing up in many areas of my life. Today I realized that every time I am a hungry ghost, I begin to consume.

This translates to eating cookies when I am not hungry, plodding mindlessly through Facebook when I am lonely, buying Starbucks when I am directionless, searching real estate listings when I am restless, driving my car when I am emotionally stuck, watching TV when I am resisting, and looking for clothes my daughter does not need when I am missing her.

It is no mistake, I think, the definition of consumption includes both the act of consuming and the state of being consumed. It may be impossible to consume without, on some level, being consumed by the thing you are consuming. The hungry ghost is suffering personified. It is the self of attachment and longing and mindless consumption driven by illusory goals.

The Hindu Prince Gautama Siddharta (founder of Buddhism) said:

Peace comes from within.
Do not seek it without.

Of course, sometimes the simplest of notions is the hardest to put into action. But I am trying. Striving to consume mindfully and consider my legacy and confront the ghost within so I may replace her with a sense of peace.

May you be alert to your needs and your desires - and strive to discern the difference between the two.