Being okay with uncertainty

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When I first started this blog, I was angry.  I never wrote about it, because I didn’t want to bring people down, but I was sick and tired of trying to explain my health issues to the people in my life, and feeling like they didn’t believe me.

Maybe you can’t see the anger, because you aren’t me.  But when I look back and read my earlier posts, I see the it in between the lines, in the way I wrote.  How sure I wanted to be of things; how determined I was to prove that things were, in fact, the way I understood them to be.

The funny thing is that now that I’ve taken more and more science classes, my perspective has changed.  The more I know, the more there is I realize I don’t know.  And the more I’m actually okay with that.

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For example, one of the things I’ve written about from time to time is how researchers are beginning to use brain imaging to study chronic pain, and even to develop new treatments for it.  This is, of course, super promising research, and I’m really excited about it.

However, one of the first posts I wrote about it, I’ve since had to significantly edit.  That original post was about how I hoped that, someday, doctors would be able to use brain imaging to “test” people for pain hypersensitivity, and prove that they had central sensitization.  This, I imagined, could be used to validate patients’ disability claims, or prove that they weren’t faking it.

The more and more classes I’ve taken– and I’ve had some really great professors, who went into the ethics of research– I’ve come to realize why using brain imaging as some sort of test wouldn’t be ethical.  The body is too complex; our testing too imperfect, to allow it to be used to potentially deny someone treatment.  People with legitimate pain could still fall through the cracks.  That’s why these brain scans should probably only be used for research and developing treatment.

That’s just one example of how my perspective has changed– knowing that we may never have a definitive way of proving who is in pain or not.  I’m more comfortable with uncertainty now, because I’ve learned so much more.

I have a much better sense of where we stand now with scientific research and where we are going.  I’ve also made a lot of changes in terms of the people I choose to have in my life.

So from where I stand now, the idea of not being able to “prove” myself is no longer one of my biggest fears.

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Something I’m learning is that you can learn a lot about people by looking at what they choose to emphasize.

For example, I once had a roommate who’d been bullied for being overweight as a child.  Of course, as an adult, this person was obsessed with clothes and makeup, and never left the house, even to make a quick run to the store, without making sure she’d done her full beauty routine.

And maybe it was the same with me– in my anger, I needed to formulate some sort of certainty about central sensitization and chronic pain, because it gave me a sense of the stability that I was lacking.   Maybe that’s why the idea of a “test” appealed to me– it offered what I wished I could provide to the people in my own life: unequivocal proof.

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Of course, I still believe in learning about central sensitization.  No question; that is what has most empowered me.  Knowing what the problem is, and naming it: to me, that’s the first step on the road to healing.

What I’m really remarking on is the paradox: the more I know, the more I am okay with what I don’t know.

I no longer need to prove anything, so not having all the answers doesn’t scare me anymore.

 

Shedding light on central sensitization

Hi everyone!  Hope you’re all having a great summer.

I just wanted to let you know that I recently added a new section to my blog, to focus on central sensitization.

When I began this blog in late 2012, I started out writing about the topics of chronic pain and fibromyalgia, terms which most of my readers are more familiar with.

However, over time, it became more and more important to me to focus on some of the scientific research that’s been shedding light on the nervous system phenomena behind chronic, persistent pain.

Central sensitization has had a huge impact on my own life, one that’s stretched far beyond the initial injuries that caused me to develop it in the first place.  (Basically, central sensitization occurs as a response to some sort of trauma to the body, leaving the person with a heightened sensitivity to pain long after any physical injuries have healed).

I’ve recently begun to tell the story of “How I developed central sensitization.”  It’s a series posts about how, after years of abusing my body as a high school athlete with an eating disorder, I finally stretched my nervous system to the breaking point.

I’ve also written a series on my experience with pain neurophysiology education, an approach to physical therapy that taught me to better manage my condition.

These stories are incredibly personal to me, yet I really believe that central sensitization is an under-recognized problem, and I’m determined to raise awareness.  It took me years of suffering before I even knew the name of my condition (or was able to get help treating it), and it shouldn’t have to be that way.

So on my blog, I’ll be telling stories from my own personal experience, well as highlighting some of the articles, research and researchers that I find inspiring and noteworthy.

I’ll still be writing about chronic pain and fibromyalgia, recognizing that there are many factors that contribute to each patient’s experience with these conditions.

Ultimately, I believe that the more we know as patients, the better we can advocate for ourselves.  That is why I believe so strongly in raising awareness of this issue, both in terms of the scientific discoveries being made, as well as sharing the impact it’s had on my own life.

Here are some of the posts I’ve written on central sensitization so far:

What is central sensitization?

The nervous system and chronic pain

How I developed central sensitization: Part 1

How I developed central sensitization: Part 2

How Clifford Woolf discovered central sensitization (and why you shouldn’t blame yourself for chronic pain)

Central Sensitivity Syndromes

Todd Hargrove: Seven Things You Should Know About about Pain Science

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

All of these, of course, are listed on my new “Central Sensitization” page.

Other great links:

Central sensitization in chronic pain (from Paul Ingraham at PainScience.com)

Dr. Sean Mackey: An Update on Fibromyalgia (really interesting talk from a Stanford researcher on the role of central sensitization in fibromyalgia).

and a lot more within my “Resources” section (if you haven’t swung by in a while, I’ve been adding a lot to it).

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I hope the things I write and link to are helpful to you.  As always, you’re welcome to contact me with any comments or questions.   (You can comment below or send me an email!).  Happy reading!

Sacroiliac joint updates.

Hi everyone!

I’m honored to say that these days, people follow my blogs for many different reasons– the main ones being, of course, chronic pain and sacroiliac joint dysfunction.

Sunlight in Winter is, of course, the site I began first, and it’s my more personal site, where I first began to talk about my story with chronic pain.

About a year ago, I started My Sacroiliac Joint Saga, mostly as a place for myself to take notes in a way that was open for anyone else who wanted to read them.  Over time, I realized I was actually getting a significant amount of search engine traffic, so I decided to make it more reader-friendly, and actually begin to produce some of my own resources.  It’s a place where I get into some of the more technical details about the sacroiliac joint, which I don’t necessarily want to bombard my readers with here.

However, I know there are a bunch of people here who originally found Sunlight in Winter while they were looking for info on the SI joint.  So, with that in mind, I just wanted to share a few of the SI joint-related things I’ve been working on recently.

I really love creating these resources because it’s a great way for me to crystallize everything I’ve learned in my mind.  I also find it interesting to put up different types of resources, and seeing which posts seem to really catch on.  I have a dream of someday creating some sort of comprehensive e-book on the SI joint, so it’s been a really good learning experience for me.

So, here are some of the things I’ve been working on recently.   Several readers have asked for information on the exercises I do for my SI joints over the years, so I thought these would be good to share with you:

The importance of pool exercise to my recovery

Three major muscle groups to strengthen for SI joint dysfunction

The most important place to start strengthening: the core & transverse abdominis

One of the best things you can do for yourself in the pool: traction

Additionally, here are some of my most popular posts to date.  Somewhat disappointingly (to me, anyway), you can’t necessarily tell by looking at them that they’ve been viewed often.  However, WordPress tells me the number of views for each post, so these are the ones that have seemed to catch on the most so far:

Tight muscles can mimic SI joint dysfunction

SI Joint Concepts: Form Closure and Force Closure

SI Joint Concepts: Hypomobility and Hypermobility

What happens when an SI joint gets stuck?

Labral Tears

Turning Point #7: Learning to Adjust my own SI Joints

If you are struggling with SI joint dysfunction yourself (or just want to learn more about it) you may be interested in reading these.

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Thank you all so much for following my sites!  Your support and feedback mean the world to me.  I really enjoy hearing from you, and am definitely open to hearing what sorts of posts you would like in the future.  And, as always, feel free to let me know if you have any questions!

 

Reasons why I write

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Every once in a while, I freak out.  Why in the world am I putting all this personal stuff about my life online?

I woke up this morning feeling like I needed to update my blogging “Mission Statement.”  I wasn’t sure if I was going to share it or not, but now I feel like it belongs here.  So, here are the reasons why I write:

To share what I’ve learned.

To prepare for my future career and crystallize my thoughts.

I’ve had to learn so much and go pretty in-depth on certain topics just to heal myself.  Now, I think it’s pretty clear what my future specialties will be as a PT, and I want to make sure I remember exactly where I’m coming from and what motivates me.

I don’t believe the traditional (insurance-based) physical therapy model is the best.

Honestly, in an ideal world, I wouldn’t have had to learn all this stuff.  Sure, I’m interested in it, but I also had to learn to take things into my own hands.

Even the times I found someone to really help me, it was never quite enough.  They were always under pressure from insurance companies, or company they worked for, to get results and demonstrate that I was progressing by certain markable bench lines each week.

In real life things are not always that clear, especially when you are dealing with a chronic condition.  People have setbacks– it doesn’t necessarily mean that their treatment isn’t helping.  It’s just the way things go.  External factors occur in our lives; our individual health fluctuates.

I recognize there are gaps in our current system, and I see how those gaps have failed me.  

I am putting this information out there so other people don’t have to spend the same amount of time looking for it that I did.

There is no good reason why things took me this long.  Honestly.  It took me years –and appointments with more medical professionals than I care to recall right now– to find the answers I needed, both for chronic pain and my SI joints.

There was no real reason, other than the first few doctors/PT’s I saw didn’t know what they didn’t know, so to speak.  So they left me with the impression nothing more could be done, when that was far from the case.

So now, I put my answers out there, for anyone who is desperately Googling the same things I used to.  

I don’t want it to take you that long.  It’s the best way for me to fight against that sense of pointlessness; to think that at least, maybe my experience can spare someone else what I went through.

I want to turn my experiences into something good.  

For a while, I tried to block out the enormity of my experience, and not acknowledge the big picture of how much things sucked at times.  It was the only way I could get through it at the time; to tell myself things weren’t that bad, to block some of it out.  To ignore how much I was missing out on.

But now that I’m a little bit older and wiser, my outlook has changed.  I try to accept what’s happened, and even try to find the good in it; the lessons learned.

There is good in it.

Luckily, through all of this, I discovered I truly do love learning about the human body.  I had never really thought of myself as much of a science person when I was younger.  In school, I gravitated towards the humanities and social sciences because I felt so passionately about social issues (and I still do).  And when you’re that age, I think you sometimes feel pressure to put yourself into a certain category.  I was a “humanities” person– I didn’t know I could also be a science person.

Educating myself– and others– on the science of the human body allows me to see how far I’ve come.

I haven’t written much about this yet, but when I was younger I put my body through the ringer.  I had an eating disorder and I exercised way too much.  Refusing to listen to my body caused me to develop the injuries that set off this spiral of chronic pain.  So it’s fulfilling for me now– almost meditative– to learn about the body from a scientific perspective, and to help other people find their way to a healthier life.

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So I write:

To gather and clarify my thoughts;

To record the useful information I’ve already learned;

To share things that you might find helpful, some of which took me years to find;

and to let others know that, despite all of what I’ve been through, it’s actually possible to come out on the other side.

I hope what I write is helpful for you.

The piece that didn’t fit

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.

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.

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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).

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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!

A Returning

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“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.”

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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.

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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.

Sense of Place

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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.

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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.

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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.

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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.

 

 

Fear of authenticity

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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.

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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.

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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?).

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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.

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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

A blog you have to check out: Para Las Fridas

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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 can still heal from the inside

My body is a full-time job

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