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.