autoimmunity – Becoming Bionic

When my daughter and I arrived in Los Angeles last Saturday afternoon for college interviews, we drove straight to her Fake Aunt Liz’s home in Laguna Beach. (Well, we might’ve made one quick pitstop at Del Taco so Clare could experience one of her mother’s fast food cravings from my LA days.)

The thing about Liz is this: as long as we’ve been friends (24 years) she’s always wanted what she called her “Granny Cottage” – a small, efficient and impeccably furnished dwelling, the complete opposite of her former Berkeley mansion that was something straight out of Architectural Digest.

Her Laguna Beach home is just that: a tiny two-bedroom cottage with an even tinier back patio. Yet the feeling in her home is what I’d call zen elegance. She really has a knack for turning any ordinary house into a stylish home. (I’ve been the recipient of her “Drunk Shui” talents in several dwellings. A few glasses of a dry Provencal rose, and Liz starts rearranging your furniture, books and knick-knacks, ordering you onto Craigslist to find this or that. Once, she even Drunk Shui-ed our entire living room a week after foot surgery.)

To maintain her Granny Cottage lifestyle, Liz lives like the minimalist she is. If something doesn’t get worn in, say, a couple months, she passes it along to someone else. If she doesn’t like something she bought, even if it’s only a few days old, it too shall be passed along. So when Clare and I arrived and Liz said, “I was cleaning out my closets yesterday,” I laughed. Her closets are already as neat and tidy as the non-closet areas of her home. What the hell else was left to clean out?!

“I was cleaning out my closets yesterday and found the boot from my bunion surgeries two years ago.” Then she ducked into the guest bedroom and emerged with said boot in hand. “Would this be helpful to you at all?”

I’ve been the recipient of some of Liz’s cast-offs in the past – blouses, yoga pants, etc. – but she’s never offered me an orthopedic boot before. Then again, Liz has watched me these past six months as I underwent first an ankle surgery followed by a total left knee replacement followed by a total right knee replacement. She also knows my ankles are next in line for joint replacements, which cannot commence until I’ve recovered and strengthened myself adequately following the back-to-back knee replacements. And frankly, I’m thrilled my surgeon said as much because the thought of going under the knife one more time this year was a bit daunting.

As much as I’m happy to wait until January to begin the ankle replacement surgeries, I’ve been limping around in pain due to the lack of cartilage in both ankles. The left one, in particular, is remarkably messed up despite already having had four loose bone bits removed during March’s surgery. I’ve tried braces and shoe inserts and even new orthopedic shoes that are so ugly you just know they have to be good for you, right?

None of them alleviated the severe pain in my left ankle.

“Let’s give it a try,” I said, hiking my pant legs up and tearing at the velcro straps of my ineffectual ankle braces.

With my crappier ankle completely immobilized by the boot, I stood, my cane in hand. Tentatively, I walked across the room. Then I walked back, this time without the cane. I noticed I was standing straighter, even able to roll through my booted foot as I stepped – a feat that, heretofore, would’ve brought on stabbing pain and more than a few f-bombs.

I wore Liz’s hand-me-down boot the rest of that visit and by the end of four days was thrilled with my ability to walk – almost like a normal person. I brought it back to Boulder with me and have been wearing it ever since. And guess what? Now I can walk anywhere, more or less, without my cane. Just me, my boot and one heavily cushioned Hoka sneaker.

A few days ago I noticed something fairly significant. For the first time in years, I was not in pain while moving through my day. Sure, my new knees still feel alien and stiff and tend to ache by bedtime. But the pain from joints so worn down there was actually a hole in one of my knee bones where there isn’t supposed to be a hole? Gone. The pain in my Really Bad Ankle (as opposed to my Moderately Bad Ankle)? Gone. At least while wearing my new favorite boot. And that’s good enough for me.

You see, in a word, pain sucks. It makes frustrated sourpusses of the most optimistic among us. It often prevents us from working or traveling or even focusing on anything other than, well, pain. And when that pain comes in the middle of the night, when it wakes us from sleep, it tends to bring dark thoughts: that the pain will never end, that recovery is impossible so what’s the point in even trying.

Twice since getting my new knees, I attempted to do the grocery shopping only to abandon ship partway through due to ankle pain. Yet three days ago I went to Whole Foods – the big one – with my new boot and no cane, and made it all the way through the task, including carrying the grocery bags inside once home.

I almost cried with relief over this palpable sign of my life returning to me after more than five years of being sidelined: leaving my full-time work, minimal travel, experimentation with countless approaches to healing that didn’t heal me, withdrawing from the world, and rarely making plans for fear I’d have to cancel anyway because it might turn out to be a Bad Day thanks to autoimmunity or osteoarthritis or both. In other words, five years of working really hard to maintain a positive outlook when inside I felt anything but.

I can’t believe I’m actually writing a story about a freaking orthopedic boot. But truly – this silly, ugly, clunky boot feels like a gift from the gods (assuming the gods are all named Liz). It feels like a preview of better – pain-free! – times to come.

It feels like hope.

* * * * * * *

Download a PDF of the first 4 chapters of Lauren’s memoir, Zuzu’s Petals: A True Story of Second Chances, free. Click here and go to the link below the “Buy the Book” button. Zuzu’s Petals is also available on Kindle. Hardcover signed and inscribed copies are available at www.laurenwardlarsen.com. Happy reading!

I was speaking with a friend today and whining about how I didn’t expect my life to be where it is at this age and stage. “I need a new beginning,” I lamented, “but I don’t even know where to start.”

“Start where you are,” she said.

Four simple words that pretty much sum it up. In a nutshell, this is where I am: I’m 54, I’m broke, and I’m broken. Okay, so I’m being somewhat hyperbolic. But that’s what it feels like on my bad days—like today, when both my body and soul ache in equal measure.

It wasn’t always this way. I once had a career that worked pretty well for me: traveled a lot on business, loved interacting with people, received regular promotions and accolades. I once had a body that worked pretty well for me: ran marathons, hiked mountains, ate and drank whatever the hell I wanted, still looked and felt good. My mistake was holding the false notion that things would always be on the upswing, that my star would continue rising because I would continue doing what I was doing.

I didn’t plan for the possibility that I might one day get sick. Sick enough that my body would never be the same again.

Sick enough that my recovery would only go so far before early-onset menopause would halt all progress and serve up a heaping helping of autoimmunity and severe osteoarthritis with a side of cancer just to drive the point home.

I didn’t understand that the medical insurance policies I used to scoff at in my younger years every time I accepted a bigger better position at a new company and went through the process of selecting my benefits package would only go so far when I actually needed them. Didn’t understand how quickly the out-of-pocket costs for every attempt I made to improve my wellness both inside and outside the standard western medicine model would add up.

When I left my last position running an international nonprofit four years ago, I thought the debilitating pain that had become a part of my everyday experience was due to being burned out, that I simply needed a few months to sleep, play, and read all those novels I’d bought but hadn’t cracked. I figured I’d rest up and refuel before finding another position that didn’t require a commute halfway across the country. But as the months—then years—passed, I realized I was getting worse, not better. The doctor visits increased, medications and treatments and surgeries were doled out, new diets and physical therapy approaches were experimented with, and I experienced a constant two steps forward, one step back. On some days, it was one step forward, two steps back.

Over the years I’ve discovered some things that work for me: sleep—and lots of it, fresh whole foods and restrictions on alcohol and crap food (mmmm, pizza), massage and other forms of body work, gentle floor-based yoga, water jogging (yes, I’ve joined those middle-aged women I used to make fun of), pain meds as needed, laughter, friends. I now celebrate when I discover something else in my body that works a little better, or hurts a little less. I measure my physical successes in the small things, like being able to get my arms high enough to put my hair in a ponytail, no longer at the mercy of a stranger in the locker room to clip it up for me.

But the woman I was, that woman who traveled incessantly, ran through airports, gave multiple speeches and media interviews in the same day, who once flew to another city in the middle of a ten-day sales conference to run a marathon—that woman is gone. Forever. As much as I want her back, I know she is never coming back. I need to mourn the loss of her—and move on.

My body will never be where it once was. I’ll never regain the stamina and physicality to undertake the kind of whirlwind speaking tours on which I once thrived. When I’m able to return to work, I will likely need to stop throughout my day to lie on the floor and put my legs up the wall or take a quick nap or meditate. (I can’t even imagine how much the thought of this would’ve made my skin crawl with shame in my 30s, such was my level of smugness regarding my health and go-getterness.)

Instead of cursing the fact that I have handicapped handrails on my toilets at home and a handicapped parking placard hanging from the rearview mirror of my car, I need to see them for what they are—a gift, that tiny bit of extra help when it feels like any one of my joints could snap with the mere flick of a finger.

Some days, I know, I will awaken with more physical pain than usual and will need to simply stay in bed and read a book or, better yet, sleep. Because some days, that’s what my body—very clearly—tells me I need to do. I no longer have the luxury of pushing through and paying the price later. That bill came due years ago.

And so this is where I am. My mind and soul are still strong, but they’re now traveling through life in a vehicle that was in a near-fatal pile-up and will never perform the way it once could. I am reminded of my first literal automobile accident a month after receiving my driver’s license and how the frame of the family station wagon was bent, requiring my mom to replace the car less than two months later. Until full body transplants are available, I don’t have that luxury.

But hey, I’m still here. I still have brains and know-how and plenty of life experience from which to draw. And I’m now sufficiently bored with being “a patient in recovery.” I’m so ready to get back out there, in whatever form that takes. So ready to interact with others, to solve problems that have nothing to do with my health, to create and be creative. To begin anew, even with a body that isn’t so new.

And to do that I will start where I am.

Tag: autoimmunity

Liz Gave Me the Boot

Start Where You Are