Advance and Retreat

After the excitement that came with my initial blog posting subsided, I wasn’t quite sure where to go next. So many ideas had been accumulating for months (and maybe even years) that it was hard to focus on one thing and take the next step. In the days that followed that first post I created a new Facebook page for My Twisty Tale, a new Twitter account,and got a shiny new email address. All that enthusiasm was bound to turn into something great, right?

Not exactly.

The response to “Goodbye, shoes. Hello, blog!” was much bigger than I had expected, and the response was so positive and encouraging that for the first time I realized that people actually want to hear what I have to say. I was overwhelmed and grateful, to say the least. But I was also the tiniest bit anxious. Now that people were actually listening to me, I started worrying about whether or not I had anything to say.

Now, most of you reading at the time I’m posting this know me in person, but for those of you who don’t I’ll just come out and say it: I have an anxiety issue. It has plagued me about as far back as I can remember, and sometimes it is worse than others, sometimes it coincides with depression, and sometimes it seems to come from out of nowhere. No matter how it comes on or how long it stays, it generally involves worrying that is disproportionate to the situation at hand. That is where I’ve been for the last couple weeks.

As each day passed and my Facebook and Twitter feeds sat empty and I had yet to post a second time, I began to get more and more anxious. What if I really did only have one post worth of something interesting to say? What if people were just being nice when they were encouraging me? Did people really want to know about the not-so-nice parts of the story? I had almost psyched myself out of the whole damn thing when I remembered one of the main reasons I started this new part of my journey: to participate.

For a good portion of my adult life I’ve been an inconsistent participant in many of my personal relationships, including my relationship with myself (which is definitely enough for its own blog post at a future date). Most recently I have been sidelined by my autoimmune conditions, but I’m certainly not a stranger to being an observer instead of a participant and it has caused me a lot of sadness, guilt, and loneliness. For many years I felt like I was waging an uphill battle–each time I felt like the worst was behind me, some other bizarre physical condition would pop up, or my mental health would take a dive. I began to stop making plans with friends because I didn’t want to have to cancel if I wasn’t feeling well, and I was self-conscious about being with people if I was feeling sick or in pain or anxious or depressed. Little by little I was starting to feel like one big walking illness.

So I retreated.

Time and time again, I retreated. I watched my friends from afar, trading a few emails and texts, watching their kids grow up on Facebook. I read countless stories and message boards, searching for people that had made it through any of the things I had been through. I watched and read and related, but I very rarely joined the conversation.

My long term friends have been so accommodating of my tendency to retreat that I am always surprised and relieved that they still allow me to come back in to their lives. I have felt unworthy of their continued support and friendship and I’ve often thought about how frustrating it would be to be my friend–that I’m much more trouble than it’s worth. These same friends have let me back into their lives after long absences with open arms and warm smiles saying “I knew you would come back when you were ready, you always do.”

My impulse was (as it often is) to wait to post again until I was having a good day–a day where I felt calm and healthy and upbeat– but that wouldn’t be very authentic. Much of my health these days is managed with medications, but I’m at peace with it because at least I know what it feels like to be a person again instead of just a series of symptoms and illness. Even on a day that my pain levels are up, as long as I am capable of getting out of bed it’s a not-so-bad day. My ability to participate hasn’t always in been my control, but in this moment it is and it’s an opportunity I don’t intend to squander.

I’m here, and I’m ready to participate.


Goodbye, shoes. Hello, blog!

I’ve always had a thing about shoes.

As a child they had to fit just right, not pinch or poke anywhere. They had to be the right color, right fit, and be buckled or tied perfectly. My socks had to be adjusted so as not to bunch up inside the shoe– the seams arranged just so. Confession: I didn’t get any less picky as I got older–I will still throw out a pair of socks if they so much as slip under my foot, and I will rearrange a buckle or tie as many times as it takes to be exactly right. You could say I’m a shoe perfectionist.

Over the years I’ve cultivated a collection of shoes that speak to me in some way. Some are fun, some are colorful. Some sexy, some demure. Some whimsical, some strictly business. For me, shoes have always been more than just a practical need–they’re a fun form of self expression and the only thing I’ve ever really collected. Each pair of shoes I own has been carefully chosen for a specific attribute: shape or height of heel, bold color, uniquely shaped toe box, hint of embroidered detailing, or even the way they sound clack-clacking on a hardwood floor. I’ve chosen shoes to stand out in a crowd or shoes that help me melt into the background. My shoes and I have had a great journey, so for the last few years I’ve been dreading this day: The Day I Say Goodbye To My Shoes.

But I’m getting ahead of myself.

First of all, thank you for being here, and for being interested in what I have to say. This isn’t my first foray into blogging, but the last time I tried I struggled with finding my voice and my purpose. I posted a few times, felt awkward and insecure, then gave up. It turns out that I was as picky about my writing as I am about my shoes. I worried about putting myself out there and worried that no one would want to hear what I had to say. I wasn’t sure it was worth sharing; was I really that interesting?

That seems like ages ago. That was when autoimmune disorders were something I had read about but never seen firsthand. It was before I spent hours and hours searching the internet for people who shared even one tiny piece of what I was experiencing. People who, like me, were in pain and struggling to make sense of what was happening in their bodies. People feeling isolated and frustrated and searching for hope. Every new symptom I had, every medication I tried or considered trying, every diagnosis, side effect or procedure: I took to the internet to find comfort and a sense of normalcy from the brave souls who cared enough to share their experiences with the world.

My story is too long to tell in one post, but now that I’m feeling well enough to share it I hope I can provide comfort to even one person who needs support. And since I have multiple autoimmune disorders and health conditions, I should be able to relate to at least a handful of you!

Now back to the shoes. Or, more accurately, my feet.

It’s the left foot, mostly, that doesn’t look or feel like it used to. It’s not particularly painful at the moment, but it has certainly gone through some odd changes that make it challenging to wear many of my friendly old shoes. The pinky toe is starting to twist toward the bottom of my foot and my other toes don’t like to straighten out anymore. My big toe no longer joins my foot in a clean, graceful manner, preferring instead to poke out at the base in a red bump. I have inflammatory arthritis that affects many of my joints, but most of the changes you can see from the outside are in my left hand and foot.

I’ve spent a fair amount of time over the last few years hoping that my feet would one day return to the pain-free, symmetrical state they once enjoyed while my beautiful shoes have languished in the closet or on the back of the door waiting to be returned to the rotation of shoes that actually leave the house. Part of me knew better, but I just couldn’t (or wouldn’t) let go of the feeling that giving up those shoes was giving up part of my identity–that I would be less me. I hated my body and my foot and I didn’t want to believe that I had no choice in the matter. My body wasn’t mine to control, but I tried anyway, and I held onto those shoes for dear life waiting for the day that I could enjoy them again.

That day has not come, and yet I’m finding myself ready to move forward. I’m learning to accept my new feet and I’m finished mourning the feet they used to be. So goodbye, leopard print Enzo’s that have always pinched but were so luxurious I bought them anyway. Farewell, first pair of Fluevogs with the lime green detail. Adios, brown cowboy boots with turquoise inlay that I got for a killer bargain. Au revoir, pretty peep-toe slingbacks. I’ll miss you and your friends, but thanks for the memories. Now I’m going to go save up for the prettiest comfort shoes I can find (I’m looking at you, ) and practice my at-home pedicure technique.