Seeing things clearly, without that added layer of judgement on top

I struggled with what to say on my blog this week, but I finally landed upon this idea as the thing that resonated with me at the current moment.

Something I’ve been realizing, more and more every day, is how much time I’ve spent judging myself for the problems I’ve had.  Not actively trying to solve them… just judging.

On some level I didn’t trust myself.  After all all of my difficulties in getting diagnosed and treated… at some point, I developed the belief that whatever health issues I was having, no one would really be able to help me.  My issues would probably always be too complex for any one person to truly understand.

From there, it became a self-fulfilling prophecy that played out from one issue to another.  Compartment syndrome, central sensitization, sacroiliac joint dysfunction.   I didn’t really believe there were answers out there, so I didn’t try that hard to look.  I gave up before the fight was over (until things got so bad that I finally didn’t).

Now I realize that, just because other people doubted me, I didn’t have to doubt myself.  And maybe, just maybe, I didn’t have to wait for things to get so bad before I took action.

In a way, my issues are too complex for any one person to understand, other than me.   I did have to step up, do my own research, and keep track of so many things myself.  But now I see that that’s a reflection on our health care system, not on me.

Everyone is rushed; insurance companies don’t pay for long enough visits, let enough adequate treatments.  (I personally feel that most of these efforts to reduce costs on the front end ultimately end up driving up costs on the back end, as people develop more serious conditions that could have been monitored or treated before they became more serious.  But I digress).

There was never any real reason for me to lose faith in myself.  My problems were real, and they had real answers.  (And you know what?  Even if they were in my head, mental health concerns deserve to be addressed too).

It’s like that quote from Eleanor Roosevelt:

“No one can make you feel inferior without your consent.”

For so long I gave so much of my power away… why?

There are so many bigger things happening in the world.  Why am I wasting time judging myself and holding back, when I could actually be contributing to something larger than myself?

For anyone who’s been struggling to make sense of what’s been going on in the world, I stumbled upon another amazing quote today, that was just exactly what I needed:

22195474_1582684825088140_2310980932586532929_n.jpg

I love this, so much.  Do justly.  Love mercy,  Walk humbly.  Nowhere in there does it say “second-guess yourself for trying to heal and then do nothing.”

I’m done trying to see things through the lens of “perfect” or how things “should be.”  I want to see things clearly (both in terms of the way I see others, and myself).

Judging yourself is really just a waste of time.

I want to have compassion for others, and maybe, for the first time in my life, also for myself.  I guess right now I’m learning what that means.

***

This post isn’t supposed to be about just me (although it kind of seems like it, now that I read it over).  It’s actually supposed to be about getting “me” out of the way.  To stop getting caught up in a cycle where I judge myself instead of doing things, for myself or for others.

If you’re reading this, I hope you know what I mean, and that maybe this post was helpful to you, too.

Healing our bodies, and the things that ripple across generations

IMG_3999

A little over a year ago, I started a second blog to focus on what I’d come to think of as this weird hip problem I’d had for years that no one seemed to understand (sacroiliac joint dysfunction).

Among friends, I usually tried not to talk about it too much, because I didn’t think anyone else would want to hear about it.  Sometimes I wondered if it was all in my head, since so many of the doctors and physical therapists I’d seen didn’t seem to know what I was talking about.  I was embarrassed to tell people about it, since only my chiropractor seemed to believe it was a real problem (and you know how skeptical I am about most things alternative health).

I started My Sacroiliac Joint Saga one warm day in May.  I’d had an absolutely awful day, and was just about reaching my breaking point with this problem and thinking I might need surgery.  I didn’t really think anyone would want to read what I wrote, but I left it set to “public” just in case.

But a funny thing happened.  Once I actually gave myself permission to focus on the issue, instead of judging myself for it, I found I had a lot more time to problem solve.

I used the mental energy I’d once devoted to questioning myself instead to research the problem from every possible angle.  Not everything I read was helpful to me, but by giving my full energy to the problem, instead of wondering if I was crazy, I ended up finding the answers I needed.

And it turned out there were people out there who were familiar with this problem– patients who had experienced it themselves, and doctors and PT’s who treated patients with it, and were even contributing to research on the problem.  I just hadn’t had the luck to come across any of them.  Looking back, I think the reason why is that I stopped searching too soon.

***

Last spring, I wrote a post called “Inner Limits,” about how I was coming to realize my past with an eating disorder was haunting me more than I knew.

Internally, I had set certain limits for myself on how much time or energy I was willing to spend focusing on fixing a “problem” with my body, and so I held myself back.  I did my exercises, I went to the chiropractor once or twice a week, I maybe read one or two articles a month on it, but that was it.  Other than that, my main focus was sticking to my routine, as if pretending I didn’t have a problem could somehow limit the effect it had on my life.

But really, as I wrote in the post, there was more I could do.  I could do more exercises; I could do more stretches.  I could spend an hour a day researching, if I really wanted to.  I had the time… for some reason, I just wasn’t.  Because I was afraid to devote my full attention to it.

Funny, right?  Here I’d been working on this blog about my journey with central sensitization, and how much it took me to find answers for it, and how for so long I’d felt misunderstood when I had a legitimate medical issue.   One of the main messages of Sunlight in Winter has always been “Believe in yourself.  Your pain is real and you deserve help.”

And yet here, the same patterns were playing out with my sacroiliac joints.  Deep down, despite what I’d already been through, part of me was still afraid that if I fixated too much on my body, and trying to “change” it, it would trigger the same level of obsession that drove my years of starvation and overexercising.  So I held myself back.

***

I haven’t written much about my family history on this blog, and I probably won’t say more than this anytime soon.  But in the past few years, I’ve come to realize that some of these thought patterns of self-doubt didn’t start with me.  Often we learn them from somewhere– usually, consciously or not, from our families.  These patterns can be passed down, and I think they very much were in my case.  There were things that happened in my family long before I was even born, that sent out ripples across generations.

I realize now that I have been on a long road– not just with my health, but with learning to believe in myself; to trust myself.  There were events that occurred in my family, long before I existed, that have affected my life and my ability to believe in myself.

Now that I’m aware of how the past has been affecting me, I’m learning to see things differently; to create my own future and way of seeing things that’s healthy, and works for me.

I won’t always be able control what my body does (I’m sure anyone reading this blog can relate to that!).  But I can control the way I see myself, and I don’t have to let health issues affect my self-perception.  Just because a doctor can’t give me an answer for something, it doesn’t mean the problem is in my head.  It doesn’t mean my problem isn’t real.  I can’t make a problem worse by “dwelling” on it when what I’m actually doing is researching and trying to find answers.

***

I don’t believe that everything happens for a reason.  I believe that, most of the time, the best thing we can do is to try to make meaning out of something for ourselves, whatever that turns out to be.

I don’t know if all my health issues happened for a reason, but now that I look back, I  know this common thread was there all along.  Compartment syndrome, central sensitization, sacroiliac joint dysfunction.

All of these problems were real; all of them were hard to get diagnosed, and hard to find the right treatment.  But for each problem (and I know I’m fortunate in this) there were eventually answers out there.

I know this is not true for everyone who writes under the “Spoonie” banner, but for me, my major health issues have all turned to be manageable.  There were answers out there, and I probably would have found them sooner if I had taken myself more seriously, and believed in the possibility of finding answers.  Or, I should say, the possibility of being understood.

***

Over the past weekend, My Sacroiliac Joint Saga hit 10,000 total page views.  I still can’t believe this blog I started a year ago as a somewhat embarrassing side project has grown to this extent, and helped so many people.  (And I know this because of all your kind comments and messages– thank you!).

And, aside from page views, 2016 Me still can hardly believe how fortunate I’ve been to finally find answers to this problem.  When I was at my breaking point that day in May, getting better wasn’t something I could really even picture.

So let this be a reminder to me, and to you if you’re reading this, to never let our health issues change the way we see ourselves.

We are so much more powerful than we realize… we just have to be able to see it in ourselves.

IMG_4091

 

 

Christopher deCharms: A look inside the brain in real time

I’ve been writing about some heavy stuff recently, so I thought it would be a good time to share something that makes me feel really hopeful:

Christopher deCharms is a neuroscientist and entrepreneur who, along with other prominent researchers such as Dr. Sean Mackey, is paving the way towards using brain imaging to study and treat chronic pain.

deCharms founded a company, Omneuron, which has developed something called rtfMRI, or “real-time functional MRI.” 

In studies of chronic pain patients, this new technology allows researchers to see exactly which area’s of a patient’s brain are the most active, and how this activity can change from moment to moment, depending on what the patient is instructed to do.

We know that the brains and nervous systems of chronic pain sufferers function differently from people who aren’t in pain– now this technology allows us to see how.

deCharms explains,

There have (historically) been three ways to try to impact the brain: the therapist’s couch, pills and the knife. This is a fourth alternative that you are soon going to have.

We all know that as we form thoughts, they form deep channels in our minds and in our brains. Chronic pain is an example. If you burn yourself, you pull your hand away. But if you’re still in pain in six months’ or six years’ time, it’s because these circuits are producing pain that’s no longer helping you.

If we can look at the activation in the brain that’s producing the pain, we can form 3D models and watch in real time the brain process information, and then we can select the areas that produce the pain.

Just as there are parts of the brain which can produce the experience of pain, there are also parts of the brain which can “turn down the volume” on pain, so to speak.

There are a few mechanisms by which the brain can inhibit pain signals.  One powerful way is through the production of our own endogenous opiates– chemicals which our own brain produces to block pain.  (These chemicals are what opiate medications such as Percoset and Oxycontin are trying to mimic).

Omneuron is researching ways which patients can learn to “turn up the volume” on the parts of their brain which inhibit the sending of pain signals.

As deCharms explains in this additional interview:

There is a built-in dial in the brain, that, when you turn it up… pain goes away.  So we hope that when we can teach people to control these systems, to control this dial in the brain, they can make the brain go down.

He explains that many of his patients report feeling empowered simply by seeing images of the pain activity in their brains on the screen.  For so long, they had felt as though the people in their lives didn’t believe them about how much pain they were in, and there, on the screen, was proof.

***

I really find this topic to be so fascinating, not to mention inspiring.

If you’d like to know more, I actually have a whole section within my “Resources” page on how fMRI is being used to study and treat chronic pain.  (I have links to a bunch more articles, as well as some interesting talks by other prominent researchers).

Hope you’ll check it out!

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.

The ‘Tyranny’ of Positive Thinking

530957751_089fb615b8_b

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

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

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

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

***

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

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

***

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

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

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

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

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

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

***

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

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

***

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

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

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

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

Trust Your Nervous System photo courtesy of Cliph

Save

Save

Save

Save

Newfound possibility

20160612_145352

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

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

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

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

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

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

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

27643937276_fd8e4a29e2_o

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

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

27604431811_41d50986cf_o

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

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

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

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

27400436020_4bae308e76_o

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

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

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

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

Save

Save

Save

Inner Limits

26958443056_45f992bd25_o

I’ve realized something about myself recently– something that has implications for my ability to heal. I’m sharing it with you all, in case it can help spark a similar realization for anyone else out there.

***

As many of you know, when I was in high school I had an eating disorder. I was very rigid; every day I ate a specific number of calories, and every day I burned a specific number of calories. If I wanted to eat more than my designated limit, I had to exercise even more.

Through obsessive calorie counting, and running an average of 5 miles a day throughout most of high school, I managed to keep my weight a good 10-20 pounds below my body’s natural set-point.

Sometimes, now, I forget what a big deal that really was. After all, it was something that was ultimately within my control, unlike the years of inexplicable chronic pain that came afterwards.

However, it recently dawned on me that my eating disorder past was affecting me more than I’d realized, in unconscious ways.

Right now I’m dealing with the very complicated and frustrating process of trying to stabilize my hypermobile SI joints.

I was finishing my exercises the other day, and after a good 2.5 hours of going to the gym, using the pool and then coming home and doing even more exercises– and then stretching– I was feeling exasperated. Why, after all of this time, am I not better?

Fuck it, I thought. Why don’t I just keep going? Sure, I just spent two and a half hours exercising, but there’s more I could do. I could do more exercises. I could do more stretches. I could get on my computer, and research more.

Then it hit me. A tiny voice, from 16-year-old Christy, telling me I was afraid to do more. I didn’t want to invest too much; didn’t want to give myself over completely to anything that involved fixing or changing my body. Because that’s what I did with my eating disorder. It was an around-the-clock process to keep my weight that low, and I ended up losing all other perspective.

Now I had regained perspective, but unconsciously, I was terrified of losing it again. In fact, I was keeping my fist tightly clenched around it, restricting the time I spent trying to fix my physical problems in a way that wasn’t all that different from the way I had once restricted my calories. In both cases, I was using an artificial number to place external limits on something that scared me.

Of course, as soon as I realized this, I was automatically able to write it off as a fear that wasn’t worth holding on to. 31-year-old Christy knows that just because she spends more time trying to fix her SI joints, it doesn’t mean she is going to go back to a rigid way of thinking and denying her body what it needs. If anything, it means the opposite.

So I’m going to listen to myself. I’m not going to force myself to do anything, one way or another. If I want to only do my exercises for one day, and then stop, that’s what I’ll do. Another day, if I feel like exercising, and then doing some research, and then going to the chiropractor, that’s what I’ll do.

It’s not about the numbers; it’s about the process. It’s not about imposing limits; it’s about flow.

Save

Save

Graceful.

4822942717_880dfb71fe_o

I’m one of those people who is spiritual, not religious.  But I love holidays because of how everything slows down, and people come out of their shells.

In Boston, on a weekday… you better not dare to take an extra two seconds to make your turn, because you’ll definitely get honked at by at least one person.

But on a day like Easter, things are slower.  People come from out of town and are reunited with their families.  They go out for huge, multi-generational walks with grandparents and babies in strollers, friendly dogs pulling excitedly on their leashes, everyone actually saying hello to one another… It’s as if, for a day, the masks are taken off and you truly see the people you meet.

***

These days, I am not always the most physically gracefully person.  Although I have had some good days with my SI joint, I’m still far from out of the woods.  Sometimes it’s really hard to walk and, in the hustle and bustle of everyone trying to get everything done, I often feel as though I am in the way.

And sometimes, people are not subtle about needing to get by me.  I don’t always walk with a visible limp– I don’t think people can tell something is wrong.  After all, I’m not elderly.  I don’t think it occurs to a lot of people that anything could be wrong.  It just looks like I’m oblivious, taking my sweet time and daydreaming while taking up space on the sidewalk.

But the thing is…I get it.  I know what it’s like to be in that mode.  I can feel myself switch into it when I’m in a hurry, and feeling a lot of external pressure to do things I don’t even really want to do (especially, in the past, when I’ve been on the way to a job I hated).

5681333279_bbb9137f8c_o

I’m not one for trying to find the silver lining in every bad experience.  I don’t think everything happens for a reason.

I’m more about acceptance— about being okay with the fact that all this bad stuff happened to me, and there wasn’t necessarily a reason for it.  Maybe I didn’t need learn a lesson.  Maybe it just happened, and it was pointless.

However, something thing I’ve learned in the past few years of dealing with health issues is the value of going slowly.

***

I realized I don’t like being in angry, rushing person mode.  I don’t like the stress that rushes through me when I don’t make a green light; I don’t like how I annoyed I get when the person ahead of me in line takes too long at the cash register.

I’d rather be the kind of person who notices that the painstakingly slow driver in front of me has just pulled out from a hospital parking lot, and that her teenage passenger is wearing a face mask (in other words, something’s seriously wrong).

The kind of person who realizes that the elderly man taking way too long ahead of her in line has probably just had brain surgery, and is out for his first post-surgery outing with his aide.  The kind of person who manages to smile at him as though nothing’s wrong, despite the dramatic white bandage wrapped around his head and the purple blood pooled beneath his eyes.

The kind of person who doesn’t think about herself and her needs first– instead, she thinks about how she can help.

I’ve been both of these people, and I know which one I’d rather be.

5633695997_afd66a5680_b

Although I’m not as physically graceful as I’d like, it’s way more important to me to be a graceful person.

To be someone moves through life as smoothly as possible, without creating too much of a wake. To be someone who heals, and tries her best not to harm.  (And, when she realizes she’s made a mistake, apologizes).

After all, none of my lasting memories are about that great time I got exactly what I wanted.  My memories are about the things that move me: the times I went out of my way for someone else, and managed to sense intuitively what they needed.  The times when someone else did that for me.

People can be amazing, and incredibly smart and kind.  But you have to remain open to it; you have to let them.

I no longer measure myself in mile times.  I measure myself in how well I was able to make eye contact with that elderly man, without letting my face show how shocked I was by his appearance.

Or in knowing the right thing to say, when a friend comes to me for help in a crisis.

That, to me, is what’s graceful.

***

Pink flower photo: alcidesota

Neil Pearson: Blending Optimism and Scientific Evidence

One of the things I really admire about Neil Pearson’s approach to chronic pain treatment is his optimism about our ability to re-train our nervous systems, once they’ve become sensitized to pain.

Chronic pain is obviously not a cheerful topic. Those of us who’ve struggled with it know what it’s like to come home from the doctor’s office feeling totally hopeless (or worse, insulted).

Then, on the other end of the spectrum, are the people who promise things that are too good to be true. In the six years I struggled with chronic pain before discovering Neil Pearson’s work, I tried just about everything under the sun. Over time, I came to find that the more optimistic someone was about their ability to “cure” my pain for good, the less their treatments actually helped in the end.

Neil’s approach is totally different, because while he has a very optimistic view on our ability to change our pain, his work is very much grounded in science, thanks to his training as a physiotherapist.

(By the way: if you’re new to my blog and don’t know who Neil Pearson is, or why I’m writing about him, you should probably start here!).

Recently, I’ve been looking through some of Neil’s older, open-access materials, which are now available under the “Resources” section of my blog (thank you, Neil!). Although I’ve been familiar with Neil’s work for a while now, I hadn’t yet seen these. I found them really interesting, because they provide a window into the thought process behind his unique perspective.

In particular, his article on the “Optimistic Scientific Recovery Model,” laid out a few key points that I felt like I’d sometimes struggled to articulate to people, so I thought I’d share them with you now.

Basically, Neil’s work is about helping people find a way to get past the limits of what they, or their doctors, had thought their recovery from pain might be.

His work is not meant to take the place of other medical interventions. Instead, it’s geared toward patients who have fully pursued all of their treatment options, and are still in pain. In other words, it’s for the patients whose doctors say there’s nothing else that can be done.

Neil’s point is that something else can be done. And in my own personal experience, that something else can be life-changing.

It’s all based on the concept of neuroplasticity– the idea that, with enough practice, we can begin to change the way our nervous systems function.

***

There are many different aspects to how we can begin to try to change our nervous systems.  I’ve written about pain neurophysiology education before– the idea that when we learn more about how pain works, as well as what’s happening in our bodies overall, it can begin to diminish some of the emotional effect that that fear has on us.

However, as I read through Neil’s articles, I’m reminded that there are many other different angles to exploring chronic pain/neuroplasticity. For example, in the “Optimistic Scientific Recovery Model,” he also writes about the importance of mindfulness and body awareness; learning to relax our bodies instead of remaining tense, which only increases pain. It’s not just about exercises to increase strength; it’s about learning to move mindfully, in beneficial ways (something I know I personally could work on!).

He also talks about the idea that we can distract the nervous system from focusing pain by giving it other information to process. Things like breathing exercises, meditation, and visualizations can all help accomplishing this, as can rhythmic movements such as gum chewing. (I first wrote about this a few weeks ago, and it still blows my mind!  For more about the gum-chewing study, click here).

***

I really think that Neil’s approach has the potential to help a lot of people– which is, of course, why I’m always talking about it on this blog.

Since I started working on this blog a few years ago, I have met so many great, interesting people who have been suffering from pain for a long time, and are taking matters into their own hands by doing their own research.  Open-access articles like these can be a great jumping-off point.  Some of them are geared more towards other medical professionals than to patients, but hey: information is power.  I think there are a lot of great ideas contained within these articles, which is why I’m so happy to share them with you.

For more articles like this, check out:

Key messages of understanding pain

Pain management strategies

Understanding pain basics

and many others to be found under the Resource section of my blog!

And, of course, Neil’s website is www.lifeisnow.ca. He has updated it recently with a lot of really great new resources for both chronic pain patients and medical professionals– you should absolutely check it out!

Happy researching!

Reading List: Vulnerability

24269340074_09e3fe117e_o

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

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

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

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

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

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

Rian Kerfoot, Truth and Cake:

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

Bianca Sparacino: “You Are Not for Everyone.”

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

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

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