Creative Writing – Sunlight in Winter

Central Sensitization, Favorites, Inspiration, Interesting Articles, My Story, Nervous System, Pain Science, Treatment Approaches

What I really want you to know

July 31, 2017August 1, 2017 sunlight in winter

I never know quite what to call the posts in which I share a video.

Every title I think of sounds either click-baity or boring. Like for this one: “Mayo Clinic doctor explains central sensitization.” “Awesome video on central sensitization,” etc. etc.

In this day and age… what do you call something that truly is a “must-watch?” The term is so overused.

But I really, really want everyone to watch this.

***

Have you ever held something in for so long that, when someone finally validates the way you feel, you end up crying?

That was kind of how it was for me, with this. This video was so great it actually made me cry.

I know a lot about central sensitization, but, honestly, most of that is from my own research. (You can check out the articles and researchers I cite in my Resources section, particularly under “Scientific Articles”).

Of course, I’m grateful to have access to these articles, and of course, to the scientists who wrote them. (Not to mention the education that allows me to understand them– big shout out to my neuroscience professor!).

But when it comes to understanding central sensitization as a scientific concept, there have been many times when I’ve felt pretty alone.

Maybe I shouldn’t feel this way, because, largely, I’ve found the answers I need– my life is so much better since I discovered pain neurophysiology education and the work of Neil Pearson (thank you again, Neil!).

But what I’m talking about is the emotional aftermath of what I went through in all the years before; all the time I spent feeling misunderstood. All the conflicts and arguments with friends and family over the “weird” symptoms no one could understand… I have sometimes felt very, very alone in trying to articulate exactly what’s happened to me.

***

That’s a big part of why this video blew me out of the water.

Here, Dr. Christopher Sletten, who runs the Pain Rehabilitation Center at the Mayo Clinic in Florida, describes, in patient-friendly language, exactly how central sensitization can happen, and the myriad ways it can affect a person.

***

On my blog, I talk mainly about pain. That’s been my main symptom, and in some ways it’s the clearest and easiest to write about.

But central sensitization can cause all sorts of bodily sensations to become amplified.

As Dr. Sletten explains, it can make lights seem brighter, and sounds seem louder. It can make you dizzy. It can cause digestive upset.

It can really affect all of the sensory input that is meant to help you protect your body and guide you through the world.

And this, of course, will make you look crazy to those who don’t understand. It can even make you look crazy to yourself.

***

So I love, love, LOVED the part around the 7:20 mark where Dr. Sletten asks, “So how much of this is psychological? NONE.” Bam.

“The emotions are a symptom, not a cause.” YES.

How I wish the people in my life had believed this, all the times I tried to explain it to them ten years ago.

I knew I wasn’t crazy; knew it wasn’t all “in my head.” But I could never find the right words to convey my reality; to convince people who’d already made up their minds.

It doesn’t mean they didn’t care. But there’s a difference between knowing you’re cared about, and feeling truly believed and understood. There’s quite a big difference, actually, and it can hurt to never get that second part from the people you love. To know they’re tolerating your “craziness,” instead of seeing you for who you really are.

***

I wasn’t really planning on writing such a personal post today. I seriously LOVE the science behind this stuff, so I was planning to take some notes on important concepts and get more into the nitty-gritty.

But I guess this is the part of my story that I needed to tell today. More of the nitty gritty will have to come later on.

***

The one sciencey thought I wanted to leave you with right now is that this video provides some great insight into how central sensitization can lead to what are called central sensitivity syndromes.

After all, it’s not just pain. It’s never just any one thing. It’s the fact that the sensory information that’s supposed to give your brain cues as to how to respond to your environment is coming in way too “loud.”

This can create all sorts of different symptoms and sensations in different people. It can lead to chronic pain; some people call it fibromyalgia. It can cause phantom limb pain; it can cause Complex Regional Pain Syndrome (CRPS).

It can cause lead to diagnoses whose names imply more of a specific focus: chronic pelvic pain. Temporo-mandibular joint disorder. Irritable bowel syndrome; other digestive issues.

But they all fall under this umbrella term: central sensitivity syndromes. Despite having seemingly very different symptoms on the surface, all of these conditions can share a common cause, at the level of the nervous system.

***

So that’s all for now. I hope you get as much out of this video as I did. (And if you do, I hope you spread it around– I seriously want everyone in the world to watch it!).

As always, if you have any thoughts or questions for me, you can leave a comment below or email me!

Creative Writing, My Story, Treatment Approaches

The piece that didn’t fit

May 17, 2017May 17, 2017 sunlight in winter

When I was young, all I wanted was to fit in, to be perfect. To do what adults expected of me. I never had a single cavity, I never missed the school bus. I was always teacher’s pet.

Then, when I hit adolescence, the reverse. My depression; my eating disorder; I couldn’t function, couldn’t fit in to any kind of mold. I missed school; my grades suffered. A few teachers saw who I really was, but in general, I don’t think anyone would have considered me teacher’s pet.

I (mostly) came to terms with these issues…. right around the time my health issues began. So, really, I have always had trouble fitting in to some kind of external mold; to meeting the expectations of those who’ve never known what it’s like to physically suffer.

Even as a patient, I have come up against the feeling that somehow, I am not meeting someone else’s expectations. My once-favorite doctor once grew frustrated with me for still saying I was in so much pain, and told me she had patients with much worse problems than me, and basically told me not to come back to her office.

(I have been meaning to write more about this doctor, because it’s from reading copies of her office visit notes that I first came across the term “central sensitization.” Yet she never actually said the phrase to me– instead, she was one of the people who told me there were psychological explanations for my pain, and kept telling me to go see a therapist. It’s so strange–she knew the term, but didn’t seem to fully understand what it meant).

I had a similar experience when I was “lucky” enough to become a patient at a well-respected pain management clinic run by a major Boston hospital. I ran into conflict, right off the bat, with the physical therapist who ran the exercise sessions, because she didn’t agree with my rational for wanting to do a warm-up before exercising.

This is something my high school running coaches– in fact, even my gym teachers, all through school– had always drilled into my head. Do a warm-up, or you’re much more likely to get injured. Yet here I was, at a place for the already-injured, having someone tell me that I was “causing problems,” simply for wanting to take care of my body. (There wasn’t enough time for me to do a warm-up and get through all of my exercises… which I later came to understand that she probably needed me to do, in order to get reimbursed by my insurance company).

So basically, from the age of 14 on, I have been familiar with the feeling of not meeting other people’s expectations… of not even fitting into any kind of mold they can understand.

But you know what? I’m okay with it. Because it’s this constant feeling of not fitting in, of being forced to look outside of what’s conventional, that has driven me to discover new things.

How long would it have taken me to discover the term “central sensitization” on my own, if I hadn’t decided to take matters into my own hands and request copies of my records? I have no idea. I do know it never came up in any of my science classes, except for about a 5-second mention in one of my neuroscience lectures. (And if I wasn’t already familiar with the term, I might have missed it).

I do believe that I will have the power to help people someday as a physical therapist, and I think my specialty, if you can call it that, will be to help the “hard cases.” The people who couldn’t be easily helped, and who, like me, didn’t fit easily into some kind of mold.

And it’s my experiences of not fitting in, of being forced to look “outside of the box” for answers, that will allow me to empathize and help them the most.

…my seeming failures were really just weird-ass portals to something beautiful… all I had to do was give voice to the story.

I am including this amazing talk by the writer Lidia Yuknavitch above, because ever since I discovered it the other night, I haven’t been able to stop listening to it, and she really inspired me to get my thoughts down into this post.

In her talk, Lidia describes how the many “failures” in her life were actually just the beginning of something new… it just took her time to begin to see them that way. And, she says, if she had given herself permission to “belong,” to believe in herself sooner, she might have been able to recognize them for what they were sooner.

She has so many great quotes– you really have to watch it for yourself– but here, I want to make sure I record:

There’s a myth in most cultures about following your dreams. It’s called the hero’s journey. But I prefer a different myth, that’s slightly to the side of that or underneath it. It’s called the misfit’s myth. And it goes like this: even at the moment of your failure, right then, you are beautiful. You don’t know it yet, but you have the ability to reinvent yourself endlessly. That’s your beauty.

If I could, I’d go back and I’d coach myself. I’d be exactly like those over-50-year-old women who helped me. I’d teach myself how to want things, how to stand up, how to ask for them. I’d say, “You! Yeah, you! You belong in the room, too.” The radiance falls on all of us, and we are nothing without each other.

That’s it, right there:

The radiance falls on all of us, and we are nothing without each other.

Central Sensitization, Chronic Pain, Creative Writing, Pain Neurophysiology Education, Pain Science, physical therapy

There is reason to hope.

February 14, 2017May 30, 2017 sunlight in winter

I saw a comment on Twitter today which really broke my heart, so I wanted to write this and make it clear:

If you are experiencing pain hypersensitivity (through central sensitization), there is every reason to hope.

If your nervous system has changed one way, it is possible to change it back.

It won’t be easy, and the way forward won’t always be obvious. But you can do it.

If you are experiencing central sensitization (as the result of an injury, a trauma, or other extreme physical or emotional experience) you have become more sensitive to pain than you used to be. Your body is using pain as a way to protect you, but it is treating you like you are made of glass. It is trying to protect you from everything.

Scientists are still researching the myriad of ways in which this happens. So far, they have identified multiple different mechanisms within the nervous system which can cause this extreme response to pain.

However, the good news is that we don’t need to know everything, yet, about how this process occurs to start treating it. (Although our treatments will only get better in the future, with more knowledge).

But you can start, right now, by learning what your body is capable of, and identifying the things your nervous system is warning you about that aren’t actually dangerous.

***

For me, it took a really smart and capable physical therapist who had studied with Neil Pearson. I expect that you will need a guide as well– someone who you trust, who can walk you through and help identify the ways it is safe for you to try to push through the pain.

Your best bet will be a physical therapist who has advanced knowledge of recent pain science. (A PT with this knowledge might not easy to find, at first, but luckily it’s becoming easier and easier. If you email me at sunlightinwinter12@hotmail.com, I can help you get started).

What you need is someone you trust, who you will believe when they tell you your body is capable of more.

Someone who is able to think flexibly and come up with more than one way to do an exercise, if you tell them the first way they gave you doesn’t seem to work.

Someone who will understand that it’s not only about what they learned about the body in school… it’s also about you, your nervous system, and your experience as a patient. Your nervous system has to be convinced that your body is safe, before it’s going to stop making things hurt.

Changing your beliefs about pain can have a direct impact on the pain you ultimately experience. When you truly learn and understand that your body is giving you pain in order to protect you, it stops being so threatening. This is known as changing your pain from the top down— from the brain to the body.

***

Of course– it’s equally important to keep working on your pain from the bottom up– from your body to the brain.

If you have chronic pain, or have suffered from some type of injury, your muscles are probably tightened into protective spasms. This, in turn, will make them weak, if it goes on for long enough.

So you have to work on the pain from both angles. You need to calm your nervous system down, and help it understand that not everything is dangerous. But you also need to give your body what it needs, and do everything that you can to help it function optimally.

***

Doing both of these things is a balancing act. Getting back in to shape is not about pushing through the pain. It is not a “no pain, no gain” mentality.

Instead, it is about being mindful. Being careful. (And again, ideally, having a trusted coach by your side).

To respect your nervous system, and to accept your body where it is currently at. Not trying to do too much, too soon, but instead starting where you can. If you can only walk for 5 minutes, walk for 5 minutes. If you need to ice your injured knee before you work out, ice your injured knee.

It’s about bringing all of these different things together, and figuring out what works for you.

My Story

A way of giving back (free photos!)

January 11, 2017January 11, 2017 sunlight in winter

Some of the stuff I’ve been writing about on my blog has felt a little bit heavy recently, so I thought I’d just take a moment and share something I’ve been meaning to for a while:

When I first started blogging back in 2012, I had absolutely no idea what I was doing, or if anyone would want to read anything I wrote.

One of the things that really helped me was to search through Flickr and find Creative Commons-licensed photos to use. (If you aren’t familiar with Creative Commons, it is a way for people to make their artistic work available for others to use under certain permissions).

Somehow, when I was writing my first fledgling posts, it would give me a little dose of courage to find that someone had just happened to make the perfect photo available to go with what I was trying to say.

These days, I take more of my own photos. I find that nature, especially, inspires me to write so I’ve gotten in the habit of snapping shots of wherever I am that makes me want to write. But there are definitely still times where I don’t personally have any photos that would be useful for a specific post, so I still sometimes go on Flickr to find the perfect image.

So, as a way of paying it forward, I’ve put many of my own photos up on Flickr under a Creative Commons license as well.

I definitely can’t claim to be the world’s most amazing photographer, but I do have a lot of photos that I put thought into, and that mean something to me.

So, if you see anything on there that is helpful for you, or might go well with something you are working on, you are welcome to use it (as long as it’s one of the ones I’ve posted with permission! There are a select few that are too personal, like of friends’ pets and such. So please check).

I hope some of these photos might be useful to you (or, at the very least, I’ve now given you a new idea about how to look for photos on Flickr!).

Happy blogging!

My Story

The road to physical therapy school

October 17, 2016October 19, 2016 sunlight in winter

It occurred to me recently that I really haven’t talked much about my progress towards becoming a physical therapist on this blog.

So, if you’re curious, here’s my deal:

I have a Bachelor’s degree in the humanities. My concentration was social theory, with an emphasis on gender studies.

My goals, when I was in college, were focused in a pretty different direction than the path I’m on now: I wanted to study social policy, and travel abroad working for various non-profits and human rights agencies. I also wanted to become a psychotherapist.

I started down that road immediately out of college, working at a mental health agency so that I could gain experience before grad school.

Before this, I’d already had a lot of struggles with chronic pain, and had to have surgery for compartment syndrome. Yet after college, I’d managed to reach some kind of holding pattern where pain didn’t cause me to miss work. That was, until the awful winter of 2010, when a few things happened in a brief span of time that caused my pain levels to flare way up.

That was my breaking point– when I tried, anew, to get answers. Finally, after months of searching, I found my physical therapist Tim, who had studied pain neurophysiology education with Neil Pearson.

***

Ultimately, I was so inspired by everything I learned from Tim that it led me to consider becoming a physical therapist.

I’d always found physical therapy to be a fascinating field. As a high school runner, I’d had a few serious injuries where I really needed PT to get up and moving again. I had formed some great relationships with my therapists, and hung on every word they said. A part of me was always a little bit sad when they told me I was doing well enough that I didn’t need to come back. I would have gladly come back back every day, just to hang out and learn.

When I was a freshman in high school, I partially tore my hip flexor during a cross-country race and was on crutches for months. It was a physical therapist who helped me overcome my fear and eventually start running again.

Then, when I was 19 and had surgery for compartment syndrome, it was a physical therapist who got me back up and moving again. While I’ll always be grateful to the surgeon who fixed my legs, my PT was the one who gave me the confidence to actually start using them again.

And now, when my life had ground to a complete halt at age 25 because of constant, debilitating pain, it was a physical therapist who gave me my life back again.

I’d always had so much appreciation for PT’s. Now, the idea dawned on me: why don’t I try to become one?

***

Growing up, I didn’t really consider myself that much of a science person. Looking back, I think a lot of that has to do with the environment at my school, and how our science classes were taught.

Once I started looking into becoming a PT– taking classes, shadowing practicing PT’s– I realized I always had been interested in health science, and exercise physiology, and human anatomy. It had just taken a different form.

I’d always wanted to do the best thing for my body. I loved when my running coaches talked about strengthening, building endurance, the benefits of stretching.

And I’d always been interested in nutrition, and being healthy overall.

It’s just that when I was younger, I didn’t have the healthiest mindset, and took some of these interests too far. But my eating disorder was not all of me– it was a snapshot of a specific place I was in, at a certain point in time, at a certain age. Although I had some distorted beliefs, that does not mean I wasn’t also genuinely interested in health and fitness at the same time.

The difference is that now, I am able to come at it in a much healthier, stable, and more grounded manner, and know that I will be able to help others with similar struggles.

***

Five years later, I can say that I ended up loving all of my prerequisite classes, and I’m so glad I made the decision to take them.

It’s been an incredibly long road. You see, some of the classes I needed to take had prerequisites of their own. At the same time, due to my SI joint issues, there were periods of time where I found it incredibly difficult to walk, drive, or even stand up for more than a few minutes.

Despite of all of this, I’m finally at the point now where I’ve basically taken all of the classes I need in order to apply to PT school. (I might need to take one or two more, depending on specific programs I might try to get into, but most of my bases are covered).

And honestly, I’m so glad I made this decision. I realized that, while the humanities will always be my first love, I am also a science person, and have been all along. I couldn’t see it at the time, but I know it now.

Favorites, Inspiration, mindfulness, My Story

San Francisco, Revisited

October 4, 2016January 30, 2017 sunlight in winter

It’s so interesting for me to go back to San Francisco.

As you may remember, I spent a few weeks in SF back in June, following a good friend’s wedding in Napa Valley.

I actually just wrapped up another trip out there. I spent most of September in SF, staying with a friend and trying to investigate whether I’d eventually want to move there for work and/or grad school.

***

The city of San Francisco is symbolic for me, for a number of reasons.

Back in 2005, one of my friends from high school (CA) and I had planned to travel to the Bay Area and visit our friend Karen, who was attending Stanford University at the time.

Our trip was actually planned for the same time of year– September.

However, I’d just had my surgery for compartment syndrome that spring, and at the last minute, I freaked out and canceled my plane ticket. After all I’d heard about San Francisco’s hills, I just didn’t think my legs were ready, and I didn’t want to take a chance. So CA flew out by herself, and I stayed behind to mend.

I was 19 at the time, and although I didn’t know it yet, I actually had somewhat of a long road ahead of me. As I’ve mentioned in previous posts, I didn’t travel at all in the first half of my 20’s, and it was only in the second half that I started to ease back into it with local trips, such as camping in the White Mountains of New Hampshire.

As most of you probably know, I developed my problems with central sensitization (CS) around that same time, shortly after my leg surgery. I definitely don’t think the surgery caused the CS, but as something that the body perceives as a “trauma,” it may have been one of the precipitating events.

I’ll talk more about why I developed CS in the future, but for now, what I want you to know is that for the next five years, I didn’t travel at all. The second five years, I got back into it slowly, but only local trips, and not by myself.

So now, at 31, after everything I’ve been through: compartment syndrome surgery, discovering pain neurophysiology education, struggling to heal my sacroiliac joints…. it feels almost like I’m living in a dream world. To be able to travel to San Francisco and walk around to my heart’s content– it’s like I was transported to a parallel universe.

Here was the moment when it really hit me, how far I’d come:

I was walking from my friend’s house to the gym, and I ended up walking up some really huge hills. Like, gigantic hills– the kind you think of, when you think San Francisco.

And I was just doing it. I wasn’t sightseeing– I hadn’t set out to “walk the hills.” I was just trying to get from one place to another, like anyone. Like a local.

And it was okay.

I mean, if anything, I got a little bit of a wake-up call about maybe needing to do more cardio. But after all the years I’ve spent only being able to work out in a pool, it was such an amazing feeling to be moving through the world, as fast as I wanted, feeling my heart pumping. I was free.

It was a feeling I’d forgotten– to truly push my cardiovascular system to its limits with each footstep, out in the wind, out in the sunshine. For the past few years, I only got to experience that feeling within the safe, weightless environment of the pool. While I am so grateful for my pool workouts, my trek on this day brought back a form of muscle memory. With the thud of each footstep, I was awake. I was back.

The thing is, this isn’t really meant to be a post about physical accomplishment. Instead, it’s about my unexpectedly “Returning” to an aspect of life that I was prepared to live without.

I had made peace with not being able to move the way I wanted. Not being able to travel, and more or less being stuck in place, taught me to try to always notice the beautiful little things around me. I’m not saying I succeeded all the time, but it was a skill that I worked at, and I got better at it.

I had to learn to savor the little things– the colors of the leaves in fall, the glitter of sunlight filtering through the trees, the taste of really good coffee– because it was the only way to make up for the things I’d lost.

Over time, it started to come more naturally. Maybe I was just getting into a better place in my life, emotionally. Maybe I was just growing up. Or maybe it was all of these factors.

But the point is, it happened. I learned to live without running, without traveling, without feeling free in a geographical sense, because I realized there were more important ways to feel free.

Now that that kind of freedom has come back to me, it’s like an unexpected bonus. And I view it gratefully.

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My Story

The ‘Tyranny’ of Positive Thinking

September 18, 2016September 19, 2016 sunlight in winter

A friend posted this article about the pitfalls of positive psychology on Facebook this morning, and gosh– it resonated.

I’ve honestly been annoyed by the concept of positive thinking for a long time. It seems like most of the time, when someone tells urges you to be more “positive,” what they really mean is that they’re tired of listening to you.

The whole idea of trying to “block out” negative thoughts never made sense to me. If you have a problem, shouldn’t you try to solve it? Pretending the problem doesn’t exist isn’t going to make it go away. You have these feelings for a reason. It’s gut instinct trying to tell you that something is wrong and needs to change.

As someone who’s spent a lot of time battling health issues that appeared to many people to be “in her head,” I’ve probably been accused of dwelling on the negative more than the average person. (But probably not more than most of my fellow health bloggers– I know you guys will know what I mean!).

***

I had never really considered how that mindset might be unique to where I live (the Northeastern US) until I spoke with my friend M., who is from Costa Rica. She told me that, since moving to the US several years ago, she feels a definite pressure to sweep problems under the rug and always appear cheerful– a pressure that was not there back home.

In Costa Rica, M. says, people have more of an understanding that problems are part of life, and that we all need to find someone else to listen once in a while. When you’re experiencing a crisis, it’s not so much a reflection on you as a person, like it is in the US. It’s more that it’s your turn to go through an aspect of life that everyone experiences occasionally.

***

Well, this Newsweek article totally backs M. and me up.

The author, Morgan Mitchell, cites several studies that have demonstrated that there are drawbacks, and even potential dangers, of positive psychology (and its less-nuanced cousin, positive thinking).

For example, Mitchell cites a recent study by Karen Coifman et al., which found that “when people acknowledge and address negative emotions toward their relationships or chronic illnesses, it helps them adjust their behavior and have more appropriate responses. Those negative emotions, in turn, benefit their overall psychological health. ”

That’s exactly what I’ve been saying. You need to fully experience the negative emotions you have, so that you can process them and then get to a better place emotionally.

Mitchell also references a study by Elizabeth Kneeland and colleagues, which “concluded that people who think emotions are easily influenced and changeable are more likely to blame themselves for the negative emotions they feel than people who think emotions are fixed and out of their control.”

In other words, people who view their own negative response to a given situation as a reflection of their own shortcomings are most likely to feel badly about themselves. To me this seems like a complete waste of energy– instead of judging yourself for your emotional response to something, wouldn’t it be better to focus on doing whatever it takes to create a better situation?

***

As much as I know “positive thinking” annoys me on principle, this is still something I’m struggling with. To let myself experience a difficult situation and, instead of judging myself for the way I react, to recognize that there is actually some wisdom in that reaction. My truest and deepest self is letting me know that this situation is not okay for me, and I need to take steps to change it.

It’s okay if things don’t always work out. It’s okay if something you thought was going to be great turns out not to be.

***

One of my favorite bloggers, Beauty Beyond Bones, wrote a post about a similar situation the other day. She found herself in a professional situation where she did not feel respected, and was not being compensated adequately. After some time, she made the difficult decision to stand up for herself, despite the potential consequences it could have for her career. She wrote,

“Our actions, whether consciously or unconsciously, communicate messages to ourselves. What do we think we’re worth? Do I allow someone to walk all over me? Am I completely upending my life to meet the needs of someone who doesn’t even respect my time when I’m there?

I am worth respect. I am worth honesty. I am worth dignity.”

This is what I believe. Sometimes, when you really just feel awful about a certain situation, and the feelings don’t go away– those feelings are there for a reason. Instead of wasting time judging ourselves, or fearing others will judge us for our response, we need to trust that inner voice that tells us where we need to be.

Trust Your Nervous System photo courtesy of Cliph

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My Story

Newfound possibility

June 28, 2016September 6, 2016 sunlight in winter

I’ve been away from my blog for the past month, and I have so much to tell you all. I took what was supposed to be a five-day trip to a wedding in California, and turned it into an amazing, impromptu two and a half week stay.

To be honest, I was really scared to take this trip. Since I first developed health issues at age 19, I have really not traveled very much at all. It’s only been in the past four years or so that I’ve started to open myself back up to small weekend trips around New England.

But California? I had to go… one of my oldest friends was getting married.

So I went. But I really didn’t want to.

I hadn’t traveled in so long that everything felt rusty. I’d clung to the same routine for so long, hoping my pain and SI joint issues wouldn’t get worse… and now, everything was about to change.

Now that I look back, I can’t believe I was so scared of a five-day trip. It’s not like I was traveling to the middle of nowhere. I was going to Napa Valley and San Francisco… two places that are hardly without amenities. I had just gotten so used to the idea that travel was not for me, that I felt as though I was traveling to a foreign country.

So I went.. and everything turned out fine. Better than fine. The wedding was in Napa, and then after that I spent two nights at my friend Karen’s apartment in San Francisco. We were having such an amazing time catching up, Karen finally getting to show me the sights and sounds of the city she’d been telling me about for ten years. After one day, we decided I should switch my plan ticket and stay. It’s something that felt so out of character for me… but I did it.

It ended up being a great adventure, and in some ways… I feel as though I re-joined the modern world. (It feels weird to tell you all this, but it’s the truth). My health issues had forced me to stay still in one place for so long, that it seemed so much had passed me by.

Now, it was time for bootcamp. I had to remember how to book a plane ticket; how to check a bag and get through security. How to handle a rental car. I got an AirBnb account; I got Uber; I got Lyft. I had to navigate us all throughout Napa Valley for the various wedding events, and then back down to San Francisco.

I had to put so many of my fears aside, because there simply wasn’t time for them. And I realized that (apart from the extreme amounts of money I spent on the trip) most of my fears turned out to be unfounded.

To be fair, I had some amazing friends to help me. My friend Karen is amazing, and so is my friend Amanda, who flew with me from Boston to be my plus one at the wedding. Part of the reason I asked Amanda to come – other than, of course, wanting her company– is that I was afraid I would need a lot of help physically, dealing with my suitcase and stuff like that.

But it was all okay, and if anything, I realized I really didn’t need Amanda’s help as much as I thought. Now, I actually think I could have made the trip alone (although I obviously still would have wanted to have Amanda come for the company!).

The lesson I’m taking away from this is that sometimes, change can be good. A new experience, particularly one that we fear, can be a great way for us to open ourselves to new possibilities, and to learn things we didn’t even know we didn’t know.

Now, I’m not suggesting that things are always going to be easy, or that all those of us with health problems have to do is wave our magic wand, think positive, and hop on a plane, guaranteed a great trip.

There’s a lot that has gone into getting me to this point. Learning the right exercises to strengthen my body, and learning the right techniques to help calm my nervous system. My life is opening back up again, but it’s only been because of the time I’ve spent being mindful of how I live, and carry myself, and remembering to work with my body instead of against it.

This is why I feel so powerfully about some of the things I share on my blog– when you have chronic pain or fibromyalgia, it is possible for things to change.

I’m so glad I took this trip, and am so excited to see where my newfound sense of possibility takes me. I hope you will all stay tuned!

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Creative Writing, Inspiration

Reading List: Vulnerability

February 11, 2016February 16, 2016 sunlight in winter

This is the question that has consumed me recently: how do people take their most precious and guarded memories, and spin them into stories, unfurling them to the world?

It seems so easy when other people do it– when you read a famous, heart-wrenching novel for class, and analyze its themes. “I could do that,” you say. “Someday maybe I will.”

But it’s so different when you begin to try– shockingly different. In real life, I haven’t begun– I’ve only hinted at my most personal stories. I’ve only begun to write them and tell them in my head.

In the morning I wake up too early, in a panic, short of breath. “What have I done?” I gasp. Then I relax. I haven’t actually written anything yet; haven’t hit publish.

I have so much respect for those who have. I’ve always loved and looked up to writers, but now I do so with a respect that is so much more real now that I’ve begun to consider the task myself.

So here, my readers, are a few things I’ve read recently that have inspired me:

Rian Kerfoot, Truth and Cake:

Mary Gelpi, Fibromy-Awesome: Getting Clean Real talk from a girl with fibromyalgia who talks about how, somedays, bathing is just not on the agenda. I’ve been there.

Bianca Sparacino: “You Are Not for Everyone.”

Beauty Beyond Bones: I love her whole blog, but I’ve recently discovered her early posts, which send chills through me. I so want to tell my story like this. (I was never hospitalized for my eating disorder, but her words resonate on so many levels).

Sade Andria Zabala: I discovered her a few months ago when I was heart-broken, and her words ripped me apart more and then healed me at the same time.

All of these pieces of writing are breathtaking — check them out!

My Story

Sense of Place

February 3, 2016February 3, 2016 sunlight in winter

Ironically, I have a feeling this is going to be somewhat of a meandering post… because I have a lot of thoughts I want to share on the topic of staying in place.

I moved somewhat recently (last spring) after living with family for several years. I didn’t move far (still in the suburbs of Boston, only closer to the city now).

However, it’s been a time of big change for me, because I’ve been trying to figure out how to do a lot more things for myself rather than relying on my family. This is true of things that everyone has to learn to deal with at some point (for example, putting my own furniture together; installing my own curtain rod). Just those boring, annoying adult things.

For me, there is an added layer of difficulty, because of my sacroiliac joint issues. As I’ve mentioned in previous posts, I am doing better than I was a few years ago, but I know from past experience that times of change are when I’m more likely to inadvertently push myself too far, and have a setback. It takes time to adapt to a new place, to a new routine; to figure out what works for me, and what I should avoid.

It’s been my grand experiment. It hasn’t always been pretty.

One of the questions I’ve asked myself is, what is family? For so long, I relied on my family members for help, assuming they were the only ones who would be willing to help me with the kinds of favors most people don’t have to ask for.

My friends knew about my struggles, but I mostly tried to avoid asking for help, except for the times when it couldn’t be avoided.

However, I am not a scared and confused 20-year-old anymore. I am 30. (And no, 30 is not old. I feel amazing, and so excited about the future!). But it’s time to start branching out– to find new ways to do things, and new ways to relate to the people in my life.

Can friends be family? Or, in other words, can I redefine my relationships with my friends, and come to count on them the way I have counted on my family?

I definitely have not done it perfectly. It’s been a learning experience.

***

Something I’ve learned is how far people will go out of their way to avoid hurting your feelings. They’ll do things that ultimately hurt you more– they’ll talk behind your back, they’ll plan a trip that involves a lot of walking, and won’t invite you– anything other than tell you to your face.

I’ve had to get better at reading between the lines. I’ve found it to be helpful if I can just take a guess at what might be wrong and offer an apology, even if the person insists everything is fine. I’ve had to get better at clearing the air; at addressing the problem as promptly as I can rather than letting it fester.

Things get awkward sometimes, because I can’t always repay a favor the way people would normally expect. For example, if one of my friends comes over and helps me carry my new mattress inside, I can’t go over the next week and help her move her couch. I have to find another way to contribute to the relationship.

Obviously, people do things out of the goodness of their hearts. It’s not as though, the very first time someone does me a favor, they expect something in return.

But over time, it’s important to show that you are also willing to help, and how much you care. There have been times where I thought I was doing a good job of this, only to realize that in some cases, my efforts weren’t really noticed.

It’s been frustrating for me, because the truth is that I put a lot of time and dedication into my friendships– to be there for people, to listen to them. I’ve come to find out the hard way that this effort isn’t always recognized.

I think it’s partly because listening comes so naturally to me. I actually love sitting down with people and sorting out their problems (it’s why, when I was in college, I wanted to be a psychotherapist). Because I enjoy it so much, and (let’s face it) I’m good at it, people don’t always realize that it can be excruciatingly hard work at the same time.

So, I’ve had to learn how to communicate better. To let people know how and when I am putting in effort, because they don’t always see it on their own. It’s all about being open, honest, and direct, while maintaining a non-confrontational stance.

What I’ve learned is that you can redefine your relationships with people. You can become closer to people, and ask more of them. But you have to be willing to put in more effort yourself– and to be prepared for people not to notice it, especially if it’s not in a form they’d expect. When that happens, you’ll need to find a graceful way to point it out.

Although this post is about people more than it is than geographic location, “Sense of Place” is the only title that makes sense to me. After all, it’s other people that form so much of our sense of place– the feeling that we belong, the knowledge that we will be okay.

But I do love the area I moved to– I am somehow still surrounded by conservation land, trails, and parks, am yet much closer to the city than I used to be. I love it– the hustle and bustle of life around me, yet against a backdrop of so much natural beauty.

As I’ve mentioned previously, over the course of the past few years that I haven’t been able to run, I’ve learned to find peace in standing still. So, over the past few months, when I’ve felt overwhelmed, I’ve turned to the natural beauty around me, and drunk it in.

When things haven’t gone my way, when I’ve felt that my “sense of place” in the personal sense was still under construction, I’ve always had my internal connection to the natural world, and that has been my anchor.

It took a while– to learn the area, to feel at home, to re-evaluate my connections with the other people in my life. It’s a work in progress, but it’s working out.