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.

Impermanence

My daughter began her day with her favorite blocks and two Boston Terrier stuffed dogs. She created an elaborate two-story house for the dogs - complete with staircase and turret - and proudly showed her efforts to me and my husband as soon as we arose.

She told me she wanted to leave it up, and I complied... warily watching her colt-like movements as she danced, kicked, and flitted around the building (already leaning precariously to one side).

And then the not-so-inevitable occurred. Around 1pm, she unintentionally smacked into the structure... and down it toppled. At which point she began sobbing, in earnest, with very large tears rolling down her pain-contorted cheeks.

I held her and rocked her and kissed her tears... and after a while she calmed down - and then let go and moved on to something else, leaving behind her woeful protestations and her fervent wish to have it all back the way it was before.

Mirror. Mirror. Mirror.

It's been startling to me lately how many things in life provide opportunity for reflection if I am aware enough to notice something is very politely staring me in the face and patiently waiting for the epiphany of recognition.

Impermanence had already been in my thoughts. A possible post for yesterday, the unfinished page sat waiting in queue when I logged in, and so the event of the blocks, the crash, and the aching sadness seemed all too apropos to ignore.

While my little bunny struggles with the unpredictability of toys and the loss of things we love, I have been watching her race ahead into developmental territory so much more aptly described as "little girl" than "toddler." She gallops into greater physical, mental, and emotional dexterity... and then crashes back past her theoretically current state to stand startled and upset within the supposedly abandoned land of "baby."

This wave-like motion behind and beyond her present age has been a great reminder of the cyclical and ceaseless process of growth and personal evolution. Even more surprising is to step back a bit and realize the tidal flow of identity, maturity, and stability hardly remains confined to children and adolescents.

My career process has been a rolling ebb and wane of decision-making, hesitation, redirection, self-efficacy, values clarification, trust, and all manner of psychosocial minutia... as has my growth in the areas of intimacy, self-concept, spirituality, and intellect.

And while the impermanence of life skips across our path infinitely (seasons, emotions, friendships, finances, beliefs, bodies, feelings...), we sometimes have the tendency to forget (or perhaps deny) a few very important things:

• Life does not stand still; change unfolds before us in nearly all moments.
  
• There is no forever. Sometimes this is wonderful. Sometimes this is painful.
• We move back and forth across the spot we think we should be; every place we inhabit is.

I make the mistake of holding on too tightly sometimes, I think, to what I want instead of what is. And I get especially tense and clamped up when what is refuses to be still long enough for me to decide I want it.

Not so different, really, from sitting in the middle of the floor lamenting my disappeared building... insistent in my pain because my love feels greater than my loss - and neither were supposed to move without my approval.

I take a lesson from my daughter, who dives into her sadness with full-throated commitment and later emerges without looking back... pouncing on a new moment with present-focused gusto and a willingness to let go of the illusion of always.

May the ceaseless flow of your life bring you comfort and provide numerous opportunities to practice acceptance and release. May the folly of forever be met with humor and patience.

Love

"Love and compassion are necessities, not luxuries. Without them, humanity cannot survive." ~ H.H. the 14th Dalai Lama

Today I've been thinking about love. It's become somewhat banal and even corny to say we all seek love, or that love makes the world a better place... more inhabitable and more meaningful. But this morning I was struck by how integral our sense of love, our capacity to love, and the meaning we make of love is to the way we experience our lives, others, and our selves.

The holidays can be a time of great stress and worry. I feel like I see more sadness around the holidays: head-down, inner-thinking turmoil; fretful and angry interactions. Certainly there is kindness too, but the holidays and our inherent attachments, expectations, and fantasies surrounding them become a time of heightened emotions - some good... some not so good.

This morning I realized many of the sadnesses I have witnessed in the last few weeks seem to stem from an issue surrounding love. And not necessarily romantic love - that's a whole other system of desires, fears, and truths. I mean instead, love that translates to acceptance, kinship, connection, belonging.

Those things, I believe, are some of what we yearn for most strongly - desire most deeply. I think this connects to Adler's emphasis of inferiority and superiority, which is ultimately an experience of "out" versus "in" - "belonging" versus "not belonging." We seek an identity straddling independent strength and interdependent interconnection. And our experience of them shapes our perception of everything around us. It impacts the narrative we weave and our concept of ourselves and our place within our multiple contexts (check out Bronfenbrenner's Ecological Systems Theory).

In a moment of clarity this morning, I realized I struggle with accepting and truly reveling in the love others show me. I struggle to consistently and freely show my love to others. And I really struggle to love myself.

This colors my perception of life. It impacts the narrative I write, the memories I collect, the thoughts I think, the actions I take, and the meaning I make of myself, my purpose, and my relationships.

Today I feel deeply loved. And I am immensely grateful. I am determined to open myself up to it, smile and glow in it, and then pass it on as best I can to everyone else.

May you feel a deep sense of love today - for yourself and others. May you remember how incredibly special and valuable you are.