Central Sensitization, Nervous System, Pain Science, Quotes, Scientific Articles

Let’s give this a whirl: explaining a scientific article in plain English

Tonight, I’m going to try out a type of post I’ve been wanting to write for a while: taking a scientific journal article on central sensitization, and translating it into plain English for my readers.

I got the idea from Paul Ingraham of PainScience.com.  He has a fantastic “jargon-to-English” article on central sensitization on his site (a translation of a paper by renowned pain researcher Clifford Woolf), which I really love.

There is no reason why you, as a patient and chronic pain sufferer, should not be able to know a little bit about the scientific research being done on your condition.  You are going to need to be able to advocate for yourself, stand up for yourself, and remember there is a legitimate explanation for your pain, even if other people don’t always see it that way.  Knowing there is research to back you up helps.

Ever since I first learned of the term “central sensitization” back in 2011, I found so much comfort in reading these articles.  Even if I didn’t understand every word, just knowing there were people out there who would believe me about my pain, if I met them, provided me with the sense that I wasn’t alone.

These changes to our nervous systems are real, even if some of the people in our lives don’t always understand.

***

So anyway.  The article that I want to take a stab at tonight is “Central Sensitization: A Generator of Pain Hypersensitivity by Central Neural Plasticity” by Alban Latremoliere and Clifford J. Woolf.  (In the interest of keeping things manageable, I am just going to outline the abstract, which is basically a summary of the article).

The article discusses central sensitization, which is the name of the process through which our nervous systems learn to become more sensitive to pain.

Let’s look at it in bits and pieces:

“Central sensitization represents an enhancement in the function of neurons and circuits in nociceptive pathways caused by increases in membrane excitability and synaptic efficacy as well as to reduced inhibition…”

This basically means that the parts of the nervous system responsible for sending pain signals become more active than they were before.

“Increases in membrane excitability” means that it will take less stimulation for nerves to send a pain signal.

An increase in “synaptic efficacy” means that the nerve is going to learn to be more efficient with the neurotransmitters that it has.  So, even though the nervous system still has the same chemicals floating around in it, it is going to learn to start sending stronger and stronger pain signals with those same chemicals.

Reduced inhibition.   Your body has many intricate systems of checks and balances within it.  It is how our bodies maintain control over our internal environment.

One way our body maintains control is by “inhibiting” some of the signals our nervous system sends.  This serves a really practical purpose– we do not need to be bombarded with reminders that our socks are a little bit itchy at all times.  Your nervous system chooses to block out certain signals when they are not useful, or in emergency situations (which is why people can feel no pain when they are in shock).

But in the case of central sensitization, our body’s ability to “block out” or “turn the volume down” on pain signals is reduced, meaning we ultimately experience more pain.

“Central sensitization is responsible for many of the temporal, spatial, and threshold changes in pain sensibility…”.

There are several ways in which these changes to our nervous systems manifest themselves.

We may find that, when something happens that we find painful, we end up experiencing it as painful in a larger part of our body than we might have otherwise.

I’ve really found this to be true with back pain.  When my back pain was at its absolute worst (before I discovered pain neurophysiology education) one tight muscle or muscle knot could make my entire back hurt.

“Because central sensitization results from changes in the properties of neurons in the central nervous system, the pain is no longer coupled, as acute nociceptive pain is, to the presence, intensity, or duration of noxious peripheral stimuli.”

This means that, in a sensitized nervous system, pain is no longer an accurate measure of the presence of an injury, or the degree to which our tissues may have been damaged by an injury.  The central nervous system is now doing its own thing, and you can’t really go by the pain to know what’s wrong.

“Instead, central sensitization produces pain hypersensitivity by changing the sensory response elicited by normal inputs, including those that usually evoke innocuous sensations.”

This means that we now start to feel pain in response to things that are not harmful, and which would have felt painful to us before.

To give you an example, I once knew someone who also suffered from chronic pain, and she said there were days she simply could not bear the feeling of clothing against her skin.  Just the feeling of a lightweight sweater against the skin of her chest made it burn and throb.

This person wasn’t crazy.  She knew her clothes weren’t “hurting” her.  But her nervous system was reacting as though those clothes were somehow damaging her skin.  There was a disconnect between her rational mind, which knew it was only clothing, and the parts of her nervous system which were contributing to her pain hypersensitivity.

(So… lest I end the post on a gloomy note, not to worry.  That’s where pain neurophysiology education comes in, to try to fix this disconnect).

***

Phew.  Okay.  That was not quite as easy as I thought it would be, all the times I thought about writing this post.  But hopefully you made it through!

Everything I write on this subject is meant to be a trial, of sorts.  I’m experimenting with what types of stories and explanations make the most sense, because I really have it in my heart of hearts to develop a set of educational materials on these nervous system changes.

So I want to see what works– what makes sense, what resonates.  (And what doesn’t).

I suffered for so long, thinking I was crazy, when the whole time there were answers out there.  And there was no good reason for it, except that most people (including many medical professionals) still do not know anything about central sensitization.

So I, and my blog, and my future potential physical therapy practice, are hopefully going to be doing something about that.

Please let me know if you have any questions, or any feedback on what sorts of things would be helpful in the future!  I do take requests!

Creative Writing, Favorites, Inspiration, Uncategorized

A Returning

IMG_1984

“I have been away.

I have often thought of how to begin this blog again after a long hiatus and then more time would pass and there it stood waiting for me to speak, write, and reach out.

The reason for my silence is the same reason for beginning this blog. Living with chronic illness permeates everything we do. It is the scaffolding of which we build each day. It determines our daily plans, what we take on, and what we leave unfinished. As I dedicated each day to doctor’s appointments, physical therapy, medication changes, and rebuilding my life after a health storm, this unfinished blog provided comfort knowing that it was a place for me to return.

As the months passed, I was forced into long stretches of bed rest, breaking from work, my passions, the world, and my voice. This is the cycle, after all, of the chronically ill. It is a sequence of retreat and victory, of silence and stories, and of mining the telos of one’s spirit.  What incites us to account our narrative to others relegates us to silence in other moments in a life lived with chronic illness.

I have to admit that at first my silence was “put upon” me. I was so engulfed in pain, fatigue, and just getting through one hour after another that I had no desire to communicate about the latest health trial. Yet, resignation turned towards choice, as I again reimagined and redesigned a future. It is a truth we face when dealing with an incurable disease that we must rewrite our future story after it is continually malformed by our bodies.

The poet Carmen Tafolla wrote: “I was the fourth ship. Behind Niña, Pinta, Santa María, Lost at sea while watching a seagull, Following the wind and sunset skies, While the others set their charts.” This post is dedicated to the future, to the reciting of a livable future, and to exploring the why in a life filled with medical chaos.

Illness is an invasion of identity. Since living through surgeries, a nine medication regimen, and too many medical procedures, I have searched for an explanation, a pathway, and a satisfactory answer to why. Why did this happen? Why me? I have done everything from pretending that the illness part of my life is nonexistent to studying the mechanisms and pathologies of the body; nonetheless, illness continues to lead its assault.

To live with a chronic degenerative disease one must constantly engage in meaning-making. Why? It is because illness is unremitting and untrustworthy. A medical crisis can topple all that you have worked towards in a mere blink.

Therefore, we are professionals at reconstruction and rebooting our future.  Often times, it is a future tinted by professional and personal sadness. Professional goals wane under the weight of the body often causing an individual to lose their job or relinquish ambitions. Illness demands a personal reimagining of what family looks like sometimes forcing an individual to move in with a family member who subsumes a caregiver role or surrendering the dream of having a family and experiencing parenthood.

Illness fractures identity and makes us feel less complete because completion is continuously interrupted.  I believe searching for the “why me” is not out of anger, jealousy, or pity but out of the attempt to take all these futures interrupted and find fulfillment in a life that no longer looks like the life originally intended.

Chronic illness mandates that the individual who lives with it coat themselves in an extra layer of depth because it is a permanent state and the human mind has forever raised questions about immutability.

I spent the last year in renovation.  It’s frightening; isn’t it?  There’s a trauma processing that must be completed in order to move forward in life.

When I was first diagnosed with endometriosis and a chronic pain condition due to a spinal injury, I had no idea nor was it explained to me that I was going to have to go through a continual cycle of insecurity. I was oblivious to the fact that I was going to have to live my life in a temperamental space.

It is of my opinion that chronic illness patients do not fit easily into the usual experience of loss because our loss is not consistent.  The future is unpredictable and so our stories are discontinued and resumed and this process repeats infinitely.

Thus we are forced to mourn each time and rebuild our futures anew holding our breath again that the house will not collapse with us inside. Our narratives remain disjointed and so without any desire for it we gain a level of complexity that is difficult to communicate and share with others even those we love the most.

I don’t know if there is a way to rid ourselves of this anarchy that illness brings. What I am still learning is that inside this chaos we must pledge to coming out of the other side of it. We must promise to find our voice again.

I have been away but now I am returning.  Each one of us can say that.

Although it may appear like a small triumph, I am proud of my return and I am proud of yours too.”

***

The above post was written by my friend C. over at her blog Para Las Fridas.  I have re-posted it here with her permission because it is quite honestly one of the most amazing accounts of life with chronic illness I have ever read.  From the moment I first read it, I was struck by the way C. managed to put into words aspects of my own experience that I had been afraid to face, much less articulate to myself.

Like the feeling of having lost time, of living according to a completely different calendar than everyone else.  Of knowing I’ve disappeared from the world, for months and years at a time, while life has marched on unrelentingly for everyone else.

The feeling of resurfacing, of returning, without knowing if it’s an illusion, or for how long I’ll be allowed to stay before disappearing again.

The feeling that I’ve become an expert at remaking my identity: after each disappearance and returning, constructing meaning again as best I can, assembling the pieces that make sense, filling in the gaps in a way I hope no one else notices.

C.’s words give me the courage to come on my blog and tell my own story, when I’m afraid it’s been too long, or no one will be able to relate.

I am not the only one who feels this way; I am not the only one who has disappeared and returned.

***

You can check out the rest of C.’s writing at Para Las Fridas!  It is simply incredible.

I also wrote this post outlining some of posts C.’s site that meant the most to me.

Lastly, you can also see what C.’s up to on Twitter.

My Story

Sense of Place

IMG_2279

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.

IMG_2281

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.

IMG_2299

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.

 

 

Creative Writing, My Story

Fear of authenticity

emas-pounder-spring-branches.jpg

I’ve noticed something about myself, since I started this blog. I love, love, love sharing my writing with others, and forming connections. Every time I have a meaningful moment on here– let’s say I publish a particularly personal post, and people really respond to it– I’m exhilarated. I get totally fired up. I start planning my next post immediately, and come up with a long list of topics for future posts…

…and then somehow, I don’t end up publishing anything for like a month.

Something in me always pulls away. I get stage fright about telling my story publicly; I procrastinate. I decide I don’t want to publish something until it’s perfect, and the next post is never perfect.

For a while I just thought this had to do with my fear of putting myself out there and being judged by strangers; of writing something really personal and then wishing I could take it back.

But I’m realizing now that there might be a deeper level to my hesitations.

***********************************************************

I think it has more to do with the fact that sometimes it can be painful to get in touch with that deepest part of yourself. The part of you that’s really you, that knows exactly what you want most out of life. Sometimes it’s easier, safer, to pretend that that space within you doesn’t exist. To focus on the tangible, the everyday.

I seem to go through months- or even year-long phases where I focus most of my attention on the more surface aspects of life. I am practical; pragmatic; planning my future. What graduate program do I want to attend? (Been stuck on that one for a while). Where do I want to live? What do I need on my next trip to the grocery store?

I want to be put together; organized. I don’t want the future to catch me off-guard.

***********************************************************

Something I’ve learned about myself is that I’m happier when I’m busy; when I’m surrounded by other people, and by ideas. I get really focused on things– my classes when I was in college. Different internships. And then, after college, the various jobs that I’ve had.

And with each one, for a little while, I’ll think that I’ve made it; that I’ve finally figured it all out. But after a while, when I’ve been focusing exclusively on other people’s ideas and never on my own, I start to feel a creeping sense of emptiness.

I try to ignore it at first. I mean, it’s an unpleasant sensation—obviously, my first response is going to be to try to block it out.

But it grows, and grows, until there will be a night when I feel distraught and cannot sleep. I will no longer have the option to try to hide; it is time to return to my own center. To get in touch with what I want, not what I think I have to do.

And for some reason, it always hurts at first, to come back in touch with this place within myself.

Does that make sense to anyone else?

It’s not that my hopes and dreams and desires are painful– it’s that it was painful for me to suppress them. I was so busy being distracted that I didn’t notice the pain building up, and now there’s a scab.

It’s not as though there has always been one thing, one way of living, one career path that my inner voice has always told me to do. First, I wanted to be a psychotherapist. Then, I wanted to work in social justice, with more of an advocacy role. Then, a few years ago, when my own physical issues had opened my eyes, I decided I wanted to become a physical therapist.  It’s not like there was one thing my true self has been telling me to do, and I’ve ignored it.

Instead, I think it has more to do with a way of being, of remembering to be in touch with that space within yourself on a more regular basis.

Why do I block out that voice? I don’t know. I think it’s because I’m not completely sure there is a place for that part of me in the world. If I was to truly listen to myself, to rely on intuition, to push ahead nonstop, guns blazing… what would happen? I’m afraid everything would turn out wrong.

So I temper that voice. I focus on external ways of making sure I’m making the right choices. (What are my PT-prerequisites? What’s the best way to build my resume until then?).

***********************************************************

Working on this blog, however, requires me to get in touch with that space within myself.

It’s a totally different experience than writing when someone else is telling you to. I can write academic papers or reports in my sleep; I can edit your paper, and you’ll be shocked at how much better I make it (haha, really!).

But writing in a truly personal way– especially when others are going to see it, when it’s a representation of yourself that you’re putting out into the world– requires a certain clarity; a sense of purpose. It requires being in touch with that truest, deepest part of yourself.

And it’s honestly hard to do that, at least on a regular basis. It’s hard for me, and I have the feeling that it’s probably hard for a lot of people.

But I also have the feeling that it’s not an issue for everyone; that there are people who have found a way to live out of that most authentic part of themselves on a regular basis, and that for them, it isn’t painful.

How do people do that? I want to know.

I have started to look for answers. I recently watched the movie “Wild,” based on the book by Cheryl Strayed, and it blew my mind. I’ve also recently started to check out Brene Brown‘s work on vulnerability, after seeing some friends whose opinions I really respect rave about her.

I’ll let you know what I find out.

In the meantime, I am happy to at least have some insight into the problem, because I think that was probably half of the battle.

***********************************************************

Please, please, please, let me know what you guys think!  Does this dilemma sound familiar to anyone else?  I want to know your thoughts!

Photo credit: Magnus Karlsson

Creative Writing

A blog you have to check out: Para Las Fridas

IMG_2049

I have recently discovered the most amazing blog: “para las fridas,” by C. Luepkes, and I really think you all should check it out.

The following quote is from C.’s post “A Returning,” in which she describes her decision to return to her blog again following an absence. I identify with every word, and of course, had to share it with you. She writes:

“When I was first diagnosed with endometriosis and a chronic pain condition due to a spinal injury, I had no idea nor was it explained to me that I was going to have to go through a continual cycle of insecurity. I was oblivious to the fact that I was going to have to live my life in a temperamental space. It is of my opinion that chronic illness patients do not fit easily into the usual experience of loss because our loss is not consistent. The future is unpredictable and so our stories are discontinued and resumed and this process repeats infinitely. Thus, we are forced to mourn each time and rebuild our futures anew holding our breath again that the house will not collapse with us inside. Our narratives remain disjointed and so without any desire for it we gain a level of complexity that is difficult to communicate and share with others even those we love the most.”

When you have chronic health issues, your story doesn’t unfold the way others’ seem to. You end up taking breaks from your life; plans go out the window. You disappear for stretches of time, because you’re in too much pain to move. When you try to return to your normal life, there is still a distance between you and others. You’re afraid to let people see the things you must do to take care of yourself now.

I personally struggle with how best to express my stories to others. It’s not that I lack subject matter– deep down, I want to write about everything– but how do I assign a structure to something that is so often meaningless? There isn’t always a purpose or a point to what I go through. Not everything can be a lesson or a dramatic turning point when it comes to chronic pain and illness. Sometimes, you are just in pain. Sometimes, your time is just wasted.

What I love about C.’s writing is that I can tell she. too, has felt those feelings of emptiness, of frustration, of pointlessness… and yet she comes out on the other side, with insight, wisdom, and compassion for others.

She writes:

“We reshape our days, the structure of our thinking, our career path, our home, how we exercise…In short, there is nothing in our lives that is not rethought or reimagined. I think acknowledging that and once again reforming it into a strength or a place of courage is important.”

I recognize so much of my own experience in C.’s story, and I know you will too. She has a lot of other great posts on her blog– you should definitely check them out.

Some of my favorites:

Why the shame with chronic pain, anyway?

The possibilities of vulnerability

Private, secret, and alone: chronic illness and feelings of isolation

When Healing Our Body Is Not an Option, We Still Can Heal From the Inside

My body is a full-time job

Thank you, C., for sharing your words with us.

My Story

“Real Stories Take Time”

photo(12)
My friends’ raspberry patch, where I was housesitting last month.

“Most of the stories we are told now are written by novelists and screenwriters, acted out by actors and actresses, stories that have beginnings and endings, stories that are not real.

The stories we can tell each other have no beginning and ending.  They are a front row seat to the real experience.  Even though they may have happened in a different time or place they have a familiar feel.  In some way they are about us, too.

Real stories take time.  We stopped telling stories when we started to lose that sort of time, pausing time, reflecting time, wondering time.  Life rushes us along, and few people are strong enough to stop on their own.

Most often, something unforeseen stops us and it is only then we have the time to take a seat at life’s kitchen table.  To know our own story and tell it.  To listen to other people’s stories.  To remember the real world is made of just such stories.”

This quote is from the most amazing book– Kitchen Table Wisdom by Rachel Noemi Remen.  I randomly happened to pick it up off the bookshelf at some friends’ house, where I was housesitting last month.

Honestly, this book basically changed the entire month of August for me.

The quote I picked out above is part of the Introduction, and lays out the basic premise of the book: that stories can lead to healing.  Real stories– the ones with twists and turns.   The stories we maybe gave up on, in our own lives, only to revisit them years later and realize we managed to learn and grow from the experience, even if it wasn’t apparent at the time.

Not the stories we are accustomed to hearing– the stories that follow a perfect literary arc.  You know, the chart we all learned about in English class.

This whole idea really resonated resonated with me in terms of the difficulties I’ve faced in my own writing.  It’s hard to put yourself out there– to write from a place of vulnerability, when you’re afraid it’s going to look like a place of negativity.

It’s hard to do that, to write about your own story in a way that feels constructive, when you don’t actually have all the answers yet.

But you know what?  I never have trouble telling my own story when I’m just talking to my friends.  My close friends– the ones I would tell even my most embarrassing secrets to.  I consider them my sisters (a few brothers, too).

When I am with my friends– at Rachel Noemi Remen’s metaphorical kitchen table– I don’t feel the pressure to form my experiences into a discernable arc.  I am able to find meaning in telling my story (and hopefully my friends find meaning in hearing it!) even if I haven’t gotten to the end yet.  Even if there is no answer, and I’m not sure there ever will be.

Dr. Remen is right– in our culture, there is this pressure to talk about ourselves in a way that’s unfailingly positive.  To present our story in a neat package, with all the loose ends resolved.  To apologize for being negative.  To only talk about our problems in the past tense, once we’ve already found the answer.

As I’ve mentioned in a previous post, that’s a pressure I’ve felt on this blog.  Not, of course, from any one person.  (In fact, I have been shocked at how generous people have been with their support!).

The pressure comes from myself, from the general cultural expectation we have that people will be positive, that to talk about our problems is a sign of weakness.

My friend M. is from Costa Rica, and says it’s different there.  That people are much more free and open in talking about their problems.  That when people do talk about their problems, others don’t see it as a sign of weakness.  Everyone has problems– it’s just part of life.

So I’m going to try to incorporate Dr. Remen’s perspective, and M.’s, as I write this blog.

“Until we stop our ourselves, or more often, have been stopped, we hope to put certain of life’s events “behind us” and get on with our living.  After we stop, we see that certain of life’s issues will be with us for as long as we live.  We will pass through them again and again, each time with a new story, each time with a greater understanding, until they become indistinguishable from our blessings and our wisdom.  It’s the way life teaches us how to live.”

Chronic Pain, Creative Writing, Favorites, Inspiration, My Story

Telling the whole story

 

“Nobody tells this to people who are beginners, I wish someone told me. All of us who do creative work, we get into it because we have good taste. But there is this gap. For the first couple years you make stuff, it’s just not that good. It’s trying to be good, it has potential, but it’s not. But your taste, the thing that got you into the game, is still killer. And your taste is why your work disappoints you.

A lot of people never get past this phase, they quit. Most people I know who do interesting, creative work went through years of this. We know our work doesn’t have this special thing that we want it to have. We all go through this. And if you are just starting out or you are still in this phase, you gotta know its normal and the most important thing you can do is do a lot of work.

Put yourself on a deadline so that every week you will finish one story. It is only by going through a volume of work that you will close that gap, and your work will be as good as your ambitions. And I took longer to figure out how to do this than anyone I’ve ever met. It’s gonna take awhile. It’s normal to take awhile. You’ve just gotta fight your way through.” Ira Glass (thanks to Jo Malby for introducing me to this quote!).

My blog, as you can probably guess, means a lot to me.

I’ve had some really meaningful moments on here.  Times when someone has thanked me, so profoundly, for something I’ve written that’s helped them, and I feel like they really get what I’m trying to do here.  Or, in different way, the times when a person or an organization with a lot of followers has shared a link to my blog, and I end up getting hundreds of views and multiple re-shares in one day.  This, of course, doesn’t happen very often. But when it does, it’s an absolutely breathtaking feeling to know my words resonated with so many people.

But in a weird way, all these experiences have sort of made it harder to come on here and write from a place of vulnerability.  To admit that I don’t have it all figured out.  After all, I want to inspire people, not bum them out.  It’s supposed to be “Sunlight in Winter,” not “The Clouds of Winter.”  And the posts that people have really tended to gravitate to, for the most part, tend to be the posts where I talk about everything that I’ve learned.

But my roommate said something really helpful the other day.  She asked, “You know what? I think you should just not give a fuck.  When I read a piece of good writing, I don’t care whether someone thinks they have all the answers, or whether or not they are writing as a professional.  What I am impressed by is their truth– that they had the courage to put something so real, so raw down paper.  When someone tells you about the truth of their experience, it makes you feel that you are not alone.”

And she’s right.  When I think about the different pieces of writing that have resonated with me over the years, it’s not necessarily the straightfoward, informative, “This is what I know now” pieces that have stuck with me.  It’s the writer’s voice that makes the difference.

After all, telling your story is not about skipping ahead to the end, to the answers you found.  It is about how you got through.

So I want to tell you about all of it.  About how, in high school, I starved myself, convinced that if I didn’t I would become fat.  And then I ran myself into the ground– all to later realize it was based on an illusion, and that I wasn’t being healthy at all.

And then, at 17, the leg injury I got from running too much.  For years, I blamed myself, and even after the surgery was afraid to move at all, feeling like I couldn’t trust myself not to break my own body all over again.

And then, at 20, how my nervous system changed.  It was a physiological process, not a psychological one, but I didn’t know that at the time.

And then, a few lost years of thinking I was crazy– of everyone else thinking I was crazy too.  Of my nervous system spinning out of control, and telling me that everything was hurt; everything was damaged…

Until finally, I discovered the work of Neil Pearson (and, by extension, Lorimer Moseley and David Butler)…

And how it changed everything about how I think about myself.  Not just my pain, and my physical body, but myself as a person.  How I realized I didn’t have a psychological problem, and that everyone who told me I did wasn’t seeing clearly.

And now, five years later, I’ve developed a perspective that I am honestly quite proud of.  I’m not afraid of my body anymore.  Not afraid of myself anymore.

I can now hear in my own voice, at times, the same rationality that I used to cling to in the voices of my doctors and physical therapists.  Thanks to all the classes I’ve taken, and the reading I’ve done, and all the questions I’ve sometimes had to push various medical professionals to answer, I’ve actually managed to piece together a larger picture.  One in which I’m not constantly afraid, or thinking something’s wrong with me.

Now I can think objectively.  I can think scientifically.

But I’m not out of the woods yet.

It’s the story of my life that just I find the answers to one problem, another problem develops.   I’ve written before about my issues with the sacroiliac joint, and they have turned to be almost as mysterious and vexing as my chronic pain problem.

But I’m going to write about them.  I’m going to write about all of it.

It’s not just about finding the answers.  It’s about how you get there.

Creative Writing

To Be Professional, or Authentic?

So, you may have noticed that I haven’t written very much recently.

Since I started my blog, my policy was generally only to write if things were going well– or at least, to only highlight the positive.

The Internet is tricky. We’re all still figuring out– and as we figure it out, it’s constantly changing.

I’m honestly torn about what exactly I want this blog to be. Do I want it to be professional– kind of like my calling card, to start building connections in the field I hope to go into?

Or do I simply want to be what I’ve always “wanted to be” ever since I read the Little House on the Prairie series as a child– a writer?

I’m torn.

Do I want to create a “reputation” as someone knowledgeable about the body– a future healthcare professional? Or do I want to tell my story, in the hopes it will help someone else out there know she isn’t alone?

It’s awkward. Actually, it’s beyond awkward.

I’ve worked in the helping professions– mental health, specifically. And there, rule #1 is never to talk about yourself– at least, never to offer up anything you wouldn’t mind having attacked later on.

And I’ve seen it– how a person can turn on you, take something you only said in an attempt to be helpful, and try to turn it into something else, twisting your words into something ugly and unrecognizable. Even sinister.

Working in mental health changed me, that’s for sure.

But even without that experience, I think we are all coming to the realization that the Internet is a place that never forgets, where mistakes are never forgiven. In this day and age of screen-shots and screen-caps and whatever else, saying something on the Internet basically means you are saying it forever.

I mean, really. Can I pour my heart out here, admitting my mistakes and defeats… and also expect people to take me seriously as their physical therapist someday?

Honestly, I don’t know.

But I have always wanted to be a writer. To put my stories into the perfect words, to hold them up to the light and examine them, to extract all the meaning from them that I can, and then to share them– that’s always been something I’ve longed to do.

So I guess I’m going to keep trying. To step out on a limb, a little bit. To test the waters.

To see what will happen if I worry less about being “professional” on here (which, frankly, has resulted in me not writing very much at all) and see what happens if I instead focus on being authentic.

Wish me luck!

Uncategorized

Favorite Posts from My First Year of Blogging: Part One

birthday cake large

When I first started blogging, I had no idea if anyone would actually read what I had written.  I tried out all different types of posts, including more journal-like entries, pictures, and recipes, as I tried to figure out what type of blog mine would be.

Hitting “Publish” on each one of those early posts was such an adventure for me.  I got so excited about each new “Like” and each new follower (actually, I still do).  And each new comment totally made my day.

It’s fun to look back now and see how the blog has evolved.  Each one of my posts was a learning experiment, and each supportive comment I got was an inspiration, helping me to figure out the direction I wanted my blog to go in.

With that in mind, I wanted to include this little timeline of my favorite posts of the past year.  If you’re a newer reader, you probably haven’t seen most of these posts.  And if you’re an older reader, I’m hoping you might remember some of these posts as fondly as I do.

As always, I am curious what you think.  Was there a particular post that resonated with you, or a certain topic you’d like to know more about?  Let me know!

December 2012

A little bit more about my story—A slightly longer version of my story than what you’ll find on my About Me page.

The Pain Clinic—The story of my very disappointing experience at a highly-regarded pain clinic with a months-long waitlist.

Coffee: A Great Tool for Dealing with Chronic Pain—I am obsessed with coffee, and I swear it helps with my level of pain.  I got so sick of seeing so many “alternative health” sites post warnings about the dangers of coffee, without acknowledging some of its potential benefits.  So I wrote this.Photo12280915

Have you Ever Tried Yoga?  This is meant to be a bit tongue-in-cheek.  Please take it with a grain of salt. :)

Names for chronic pain—This is one of the first posts I wrote, to lay a foundation for the topics I would be writing about later.  It outlines some of the various terms that medical professionals use to describe chronic pain states.

Some of the terms are really helpful and interesting; others are unhelpful, or possibly even damaging to the patient’s chances of getting real help.  It’s good to be aware of both.

Christmas 2012— Just photos

IMG_1281

January 2013

Why You Should Learn a Little Anatomy— Please read this one.  I really think it’s great :)

February 2013

Violins and enhanced sensory maps – about how the same parts of our nervous systems that are responsible for talent and learning are also the parts that can cause us to develop chronic pain conditions.  Pain and talent might be two sides of the same coin.

violin on side

How to Talk about Pain: Central Hypersensitivity– I am always so happy when I read articles by a researcher who really gets it.

Know Your Enemy—I stumbled across an opinion piece on Medscape.com written by a rheumatologist who says he intentionally “weeds” fibromyalgia patients out of his practice because they do not “interest” him.

A Post for Aaron Swartz — In honor of a generous spirit and Internet pioneer.

aaron swartz flickr

So… I Lost an Ovary—The title of this one is pretty self-explanatory.  Ugh, what an awful month last February was.

Beware the Red Herring—Looking at how some medical issues—and the pseudoscientific fads that accompany them—can obscure other more important issues.

That’s it for Part One of this look back.  Stay tuned for Part Two!

Photo Credits: