Category Archives: This Doll’s Story

Text reading "How we got here from there" with a picture of a cab

How We Got Here From There

 

So much has been going on in my life lately, and some of it — maybe all of it? — relates to or touches (in some way) my chronic pain experience.

Or maybe I mean the chronic pain experience touches everything else in my life, especially the stuff going on lately.

Or maybe it’s both.

Here’s what happened in my life, and then I’ll tell you what that means for this site.

What Had Happened Was …

Honestly, it feels better to me to simply bullet-point this list of change, but I am beginning to realize that this urge is probably related to my tendency to avoid the subject of my own pain.

And since that doesn’t seem entirely healthy or productive, I’m trying to work on that.

So, deep breath, and here we go.

Several weeks ago, I was notified by my landlord that we were being evicted. He had “other plans for the property.” (I suspect those plans involved another steep rent increase, which he knew I wouldn’t be able to pay.)

As a result, in the space of a few weeks, I had to find a new place to live. Initially, I focused on other places in my vicinity — in western North Carolina, that is — but it soon became clear that the rent situation locally had changed dramatically in the three years since I’d last looked. Simply put: there was nothing around I could afford.

As I was speaking with a friend on Facebook via chat messages about this, I jokingly said, “Hey, you wouldn’t want to get a place together, would you?”

My heart just about stopped when the reply came back: “Actually, yes.”

Please don’t joke with me right now. I can’t take it, I thought.

But she wasn’t joking.

So we talked for awhile longer, then again on the phone, then more and more … and within a few weeks, we were settled. We’d move in with my friend — into her apartment in upstate New York.

Not quite getting a new place together, but she had some unfinished attic space, and been planning to do something with it for awhile.

So as she later explained it to me, she thought, why not fix it up for Annie and her daughter, they can stay for awhile until Annie gets her feet back under her and figures out what to do next, and then whenever she decides to move on, I’ll have the space to use myself. 

Getting Up to Our New Home

Getting up to New York from North Carolina was a problem. We had no car, and I had very little money.

Fortunately, my brother and sister in law were planning to give me use of their old car after the purchase of a new one. So that was awesome.

But it was a manual transmission (a stick shift) and I hadn’t driven any car in three years since I’d sold the last car (also a stick shift). So my brother suggested that we take the bus or train, and he volunteered to drive the car packed with our stuff up to NY.

Awesome!

And this would give my daughter time to spend a few weeks with her dad at the beach in South Carolina, and while she was there, I could stay with brother and sister in law.

More awesome!

Right?

Well. First I did some research, ultimately deciding that the bus made more sense. But then Greyhound abandoned us in Durham NC at the downtown Greyhound station at 11 PM.

You can read more about that here. It was a whole thing. Anyhoo.

We ended up taking Amtrak, thanks to another incredibly generous friend. We went from Durham up to Penn Station in New York City, 10 AM-ish to 8 PM-ish. Then we had a two-hour layover at Penn (if you’ve never been, let’s just say that it’s an experience).

Then another 2 hour train ride to Albany (Amtrak doesn’t go to the new town, sadly.) Next, at 2 AM, a cab ride to a motel, then a day and a half in the motel, then our friend and new roommate would come pick us up there and take us to our new home, about 2 hours from Albany.

Then my brother will pull into our new town with the car I will have use of and all our stuff.

Phew. But OK, right?

Yeah, no. Almost! Soooo close, as a matter of fact, but … no.

Instead, the clutch blew out on the car the minute my brother pulled off the interstate into our new town. We met him at the mechanic’s garage, and within a day it was clear: this car was dead, and the cost to fix it would exceed the cost to get something newer and in better condition.

So we got the car unloaded and carted over to the new place, brother got the car sold to a junk yard, and then we got him dropped off at the car rental place so he could pick up a car for the drive back to North Carolina.

And here we are. Carless but roomie has access to a car, and we’re in a town with pretty decent public transportation and a grocery store within walking distance. Also, because of the exorbitant rent I’d been paying and the much more reasonable rent here, I’ll be saving quite a bit of money, so I’m confident that I can get a car at some point.

What All This Has to Do With (My) Chronic Pain

Gotta admit: It’s been a struggle keeping my equanimity here lately.

So many challenges. So many unexpected problems to solve. So many people contributing to getting us here, for which I’m eternally grateful, but it also causes more stress for the stalwart “do it all myself” types like me. (I’m working on that.)

During my visit with my brother, who also has some of the same issues I do (back pain, neuropathy, etc.), he commented on my current pain level, which was admittedly high that day.

I mean, let’s face it — moving all our stuff, staying on a couch for a few weeks, planning a second move to a completely different state and all the stress that involves? That’s not exactly conducive to decreasing one’s chronic pain levels, amirite?

I made some self-deprecating comment and a joke.

He didn’t laugh. He asked me, “What are you doing about this?”

I thought, What do you mean, what am I doing? 

I said, “There’s nothing to be done. I could get surgery, if I had insurance. But I don’t. So I just exist. I live with it. I try not to make it worse.”

He said, “Have you ever heard of the McKenzie Method?”

I had to struggle not to roll my eyes. Did he have any idea how many bodywork methods I’d looked into? How much physical therapy? Acupuncture? Supplements? Yoga? Massage? Chiropractic?

Of course he did, I see that now. And he was quick to add that McKenzie might not help me at all.

But he gently suggested I might want to look into it.

I think that planted the seed for me — the seed of maybe there’s more I could be doing.

After all, it’s been months – no, years, actually. YEARS — since I tried a new modality for my pain, or for anything other than temporary relief of the pain. I haven’t been working towards healing except through prayer for years.

For years. (It bears repeating.)

All that time, I’ve focused on maintaining the status quo. Keeping it from getting worse. Thinking someday, hopefully, maybe, I can get the surgery that will hopefully, maybe, reduce the pain and numbness in my feet and legs at least, if it won’t solve all my pain issues.

That was my whole focus.

I didn’t think healing was possible. Or at least, I didn’t pursue it.

But now … now, I’m not so sure.

I’m at least sure of this:

I’m no longer willing to accept that it’s not possible.

I’m no longer willing to not try to heal. 

I’m no longer willing to assume the status quo is as good as I can expect, ever, for the rest of my life.

I’m not saying I’ll ever be like my brother, with his cross-country (literally!) bike trip plans and hot yoga and … oh, so much more.

But I do think it’s at least plausible that I may achieve a state of health without the pain and numbness in my legs and feet.

And that’s the one condition among all my symptoms that’s distressing me most right now.

It’s distressing because it means I am vulnerable and at risk for so many unpleasant things, like falling and breaking bones — I did just celebrate my fiftieth birthday, after all, as hard as that is for me to believe.

So I decided just now — today, this morning, a few hours ago, actually — that this is what I’m going to do.

To wit, I am going to pursue healing.

Y’know, again.

What That Means for Trauma Dolls

I’m not aware that I’ve ever pretended to have any answers, let alone all the answers, for every person suffering from chronic pain.

But for a time, this site was purposed towards, and published as, a lifestyle advice site for people with chronic pain.

That’s not the way it started, though.

It all started, waaaay back when, back when it was called “The Tramadol Diaries,” as a personal expression and resource clearinghouse. We had links to resources for folks who’d received one chronic pain diagnosis or another. And we had personal essays written mostly by me, or by the occasional guest blogger.

And that’s what we’re going back to. Starting now.

I’ll share mostly personal reflections on everything I’m doing to pursue my own healing, as well as the full spectrum of all we CP’d folks endure at the hands of the medical community — good, bad, and ugly.

If I find something that looks like it might be helpful, I’ll share it, of course, but for the most part, this is me, this is my experience, and this is what I think, feel, believe about my own chronic pain experience.

I’ll probably also be turning off comments here soon. I’ll explain why in a separate post later next week.

There’s one more thing to point out in connection with this new focus: the look of Trauma Dolls has changed pretty dramatically.

You’ve probably noticed this already. Gone is the cutesy doll header, the pink and brown and beige color scheme, the rotating box of graphics on the home page.

Instead, we’re now sporting a clean, minimalistic, monochromatic white look. It’s courtesy of the standard-with-WordPress 2015 theme. I don’t promise it’ll stay forever, or even for very long. But until I have the bandwidth and energy for a redesign, it’ll do.

So that’s where we stand. As always, I welcome feedback and inquiries – use the contact form here to get in touch with me.

Venn diagram showing overlap between chronic pain patient, coaching, and entrepreneur experience

Why Is It So Hard to Acknowledge Our Own Pain?

Earlier this month, my good friend and productivity role model Téa Silvestre of Story Bistro asked me and a few other solopreneur types for our best advice for chronic pain peeps who want or need to work for themselves.

I had to think about it for over a week.

So on Friday – yesterday, as I’m writing this post – Téa’s deadline was fast approaching. With two hours left to go, I sat down with a project notebook* to brainstorm. I asked myself “If I could go back in time and advise myself when I began this journey, what would younger Annie most benefit from hearing?”

And I sat there, pen poised, brain firing, no significant fibro fog to impede my thinking, on a relatively good pain day (3 out of 10) …

And I couldn’t think of a damn thing to write.

I don’t know why answering this question was so difficult for me. I’ve been dealing with chronic pain from scoliosis and fibromyalgia for over 15 years, and have been self-employed for at least half that time. I’ve also been blogging here, or at this site’s predecessor, for most of that period of self-employment.

In fact, if you drew a Venn diagram of the areas of my life impacted by the topics raised in this question, then Téa’s question would lie right in the middle of the overlapped part:

Venn diagram showing overlap between chronic pain patient, coaching, and entrepreneur experience

Why is it so hard for me to write about my chronic pain experience?

Partially, I think, it’s a reluctance to identify in any way as or with my diagnoses. I am much more than my twisted spine or my constant muscle pain.

Kate over at Betty Means Business has written about her experiences as an entrepreneur with chronic pain. I found her first paragraph particularly striking:

Even though it impacts me every moment of every day, this is something I rarely share about in detail. Not because I’m ashamed of it. Mostly I’d just assumed that part of my message is about focusing on what’s possible, instead of focusing on limitations, and so I do my best to model that. But I can see that also means I could be brushing aside an important part of the story.

I can definitely relate – how about you?

It feels like I’ve been “brushing aside an important part” of my own story for awhile, actually. When others tell their own stories, I don’t feel this strange sensory mix of annoyance, frustration, and boredom.

And I don’t want to shut them up the way I want to shut me up, when I start talking/writing/thinking about my own experiences with chronic pain.

I’m pretty sure I’m not alone in this regard. After all, most of us human beings want to achieve whatever it is we want in life on the strength of our own merits. We want to be known as people, as individuals — not as diseases, not even as individuals with diseases.

We’re complex creatures, and we simply cannot be accurately boiled down to this one – albeit huge – slice of our lives.

Is that what’s going on here? Am I maybe not so much bored by my own pain as I am afraid of being typecast by it?

* A large soft-cover plain Moleskine notebook, which I habitually use to track and log my work on specific projects – I have one dedicated to all my writing focused on chronic pain.
Man shrugging seen through an open window

Trauma Dolls: The Blogger Is (For) Now In

Man shrugging seen through an open window
Wait a second…

Didn’t there used to be something else here?

Yep. You’re not imagining things. There used to be another post in this space, announcing that Trauma Dolls — the site registration, the files, and possibly the content and associated social media accounts — was for sale.

The (slightly) short(er) story: I have struggled my whole life with “too many projects and not enough time/bandwidth.” Over the last year, I’ve had to come to grips with the fact that I’m getting older and it’s getting harder to bring any creative project — of which I have so, so many — to completion.

I concluded something had to go. And looking at the entirety of the landscape as objectively as I could, I had to conclude the thing to go was this site. I’d been struggling for awhile with finding something worthwhile to write about here, even as the war on drugs became the war on chronic pain patients and more and more we saw evidence that an ugly tide had turned.

I knew this. I had opinions and thoughts and feelings on all of it. Yet it was like pulling teeth for me to sit still long enough to write about it, when I had all these other projects in varying states of completion begging for my attention, too.

I didn’t want the content to go away, but I knew if I just let the site sit out there on the web, I’d inevitably feel guilty for not doing anything with it.

So I decided to put the site up for sale.

And then, something happened. Something I should probably have foreseen, since it’s happened before. Somehow, sometimes, the minute I make a decision to put aside a creative project, the next thing that happens is that I get hit with crashing waves of “YOU HAVE TO WRITE THIS!” *smack, gurgle* “AND THIS!” *smack, gasp* “AND THIS!” *smack, pant, gurgle* “AND DON’T FORGET THIS!”

Enough, already.

I could just set those waves aside, metaphorically speaking. But I know myself pretty well. I’d feel guilty about ignoring those urges to write, and I’d always wonder what could have happened if I’d only listened to them, done what they were trying to compel me to do.

So, if I’m gonna feel guilty either way, I’d rather feel guilty in the way that doesn’t leave me forever wondering what could have happened IF ONLY.

I have no idea what’s going to happen. I’m making this up as I go along, as we all do. I’ll make no promises about how many posts I’ll write or how often I’ll publish. I honestly don’t know.

The only thing I’ll promise is that I’ll continue to write and publish as I feel led to do and as other, bigger commitments allow.

The first of those waves to hit is a longform piece I’m working on for Medium. That one’s going to take a few more weeks to complete, but I’ll let you know when it’s up. (My first piece on Medium. And it’s gonna be a doozy. And I’m … really, really nervous about that.)

Second wave is a blog post for this site, which I’ll get done this week, God willing and the creek don’t rise.

After that – well, we’ll see! Stick around! Could be fun! Could be a disaster! WHO KNOWS!

Photo credit: ¯\_(ツ)_/¯ via photopin (license)

Something’s Gotta Give

Graffiti on a wall reading "Follow Your Dreams" with a red "Cancelled" sticker on topBack at the beginning of this year, I came clean with this site’s readers.

I confessed that I felt bored writing about pain.

That I was feeling a good bit of resistance to the label of “chronically pained” – a label I’ve been living with for over 10 years now.

That the combination of these rather complex emotions was behind my absence from this site for several months.

I wrote another post after that one about the external life stressors that also kept me away from the blog.

And then I didn’t write another post for this site until this past Sunday – six months later.

Something about the road to hell and paving stones made out of good intentions…?

Anyhoo. That’s a post for another time.

What I didn’t ‘fess up to back in January – and couldn’t have, anyway, because frankly it didn’t even really register with me consciously until a few weeks ago – was a deeper, darker thought that was probably behind all that boredom and resistance.

It’s such a dark thought that even now, after becoming aware of it, I don’t really want to write it.

But like a reluctant witness in a mafia trial, I swore to tell the truth in my writings here, so – with a not-insignificant dose of trepidation – I’ll come clean(er) now:

I feel like a fraud.

There. I said it.

Scones, anyone?

What?

Oh, ALL RIGHT.

I feel like a fraud because this site’s tagline promises that you can thrive – not just survive – with chronic pain.

Yet for the last several years, all I’ve been doing is surviving. And not just surviving – barely surviving.

To be fair, for the first few years after the Cat-5 shitstorm made landfall in my life, all I could do was concentrate on survival issues – reflected in the plaintive, slightly panicked tone in this post, for instance.

But for the last two years, survival has been slightly more assured. We have our own digs for the first time in a long time, and even without the Section 8 benefits that should have started for us back in February (thanks EVER so much, Republicans), I’ve been able to make enough money on my own to cover the rent and associated bills.

It occurs to me now that what I was feeling back then about the time of the “The Truth Hurts” post, and for the intervening years between then and now, was a heightened form of acceptance.

In truth, it was more like resignation.

I was resigned to surviving, and resigned to not thriving.

Which made this whole site – or at least, my continued publication of its articles – a fraud, in my view.

My days are like carbon copies of each other. I wear yoga pants – I sleep in yoga pants – and shuffle around in pink fuzzy slippers with grosgrain ribbons and sparkly crystals that my daughter gave me last Christmas. My ass is planted so firmly on the couch that it’s permanently taken said ass’s shape. I work. I write. I make dinner. I spend a half-hour talking with my daughter. I go to bed. In between, I take medication to stave off the worst of the pain. I hurt in between doses, but for the most part, it’s manageable.

It’s … acceptable.

It’s tolerable.

And I think it’s killing me.

So, now that I know that’s what’s been going on for the last few years – that somehow I’ve become resigned to merely coping with my pain – I have a few options. As far as I can tell, actually, I have three:

  1. Change this site’s tagline to “coping with chronic pain.” This option leaves me cold and thoroughly uninspired.
  2. Change the way this site gets updated. Stop writing for this site completely. Let other people take it over (people who haven’t lost hope) or just let the thing die altogether.
  3. Change my life.

Something’s got to change, one way or another. And I don’t know what, and I don’t know how. I have loosely formed clouds of ideas – malleable cotton puffs that twist and shift just as soon as I start to examine them closely. I have very few answers. I do have questions – but not all the questions.

But I do know that when I contemplate living the rest of my life in this sad state of resigned nothingness, I feel incredibly sad.

And that feels unnatural to me.

So: Something’s gotta give.

Photo Credit: Chris Devers via photopin cc

Grieving the Body We Lost to Chronic Pain

Black and white image montage of ballet student's feet I used to dance.

From 4 years old right through college, my weeks were marked by a steady progression of dance classes. Ballet, tap, jazz – for a few years, baton twirling and competitions on the weekend.

I mark the years by the name of the teacher I was currently studying under. The Barbara years, the Jodi years, the Heather years.

During an adolescence marked by struggles with my weight and a steady onslaught of bullying and teasing, with all the self-loathing that combination always yields, my dance skills were a much-needed source of body pride for me.

I could do splits easily. Put my palms flat on the ground by my feet with straight legs. Pull my foot back up over my head and touch my nose with my toes.

And then chronic pain invaded the territory, planted flags, subdued the natives, and changed everything.

It didn’t really occur to me until a few years ago – over seven years into my new reality – that I’d lost something there.

I mean, sure, intellectually I grasped the concept that my days of pulling my foot over my head were probably over.

But the idea of having lost the body I used to have and enjoy eluded me. It just didn’t register, not until quite recently.

We all lost something when chronic pain became our new reality – something quite real: the body we used to know.

These new bodies we have aren’t at all similar. They refuse to cooperate. You want to go left, but the body has its own ideas. You want to get up and be active – it says “hell, no, this ass ain’t leaving the couch.” You want to stand straight and still at your best friend’s wedding – the body’s all “nah, I think I’m gonna feel dizzy now and lose my balance so you make a fool of yourself and upstage the bride.” You want to play ball with your kid – two pitches and the body goes “We’re done here.”

And then there’s the pain. Not just the pain you know – the all-too-familiar aches and cramps and buzzes and stabs. Also the new pains – the breakthrough pains, the unfamiliar sensations that happen suddenly after a movement you’ve done a million times before without a problem, the involuntary spasms in places that never felt pain before.

We’ve lost that body. And even though we can improve, get stronger, and even heal – we can’t get that body back. It’s gone – it’s forever been changed.

It’s a real loss, and it needs to be grieved.

When my mother died, I felt immediate grief. I did a lot of crying those first few days, and I felt the full force of the loss at her funeral.

But then a week or so later, something odd happened. It was like a switch got flipped. I felt nothing. Pure numbness, emotionally speaking.

Granted, I had a lot of shit going on about that same time.

Something about that whole series of events seemed to shut me down emotionally, and put a halt to the grieving process as matters of survival took precedence.

But a funny thing happened. After I went through that Category 5 shitstorm, and after I’d managed to get my feet back underneath myself, boom: the grief was right there again.  Insistent. Pervasive. It even invaded my dreams. I’d dream about Mom all the time, and every single time, though the dreams themselves varied, there’d be a point in each where I’d remember that she had died. And then the next moment, which was even worse, I’d wonder, “Which was the dream? Her death or her being alive?”

My point – and I do have one – is that grief will not be denied. One way or another, we’re going through whichever of those five stages we need to hack our way through.

Once we get through those stages, we can finally be free of that baggage, at least, and get serious about rebuilding our lives, and taking care of the bodies we have now.

Photo Credit: Mena Rota via photopin cc

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