The Media Coverage of Chronic Pain is Oversimplified

The Washington Post recently published an article about CRPS titled “The Strange Pain that can Overcome Kids, Especially High-achieving Teenage Girls.” The article was shared with me by someone who has never experienced a chronic, physical illness and believes that you can actually have unlimited spoons. The premise for sharing this article was simply, “I thought it could be interesting”.

Here’s the thing about living with CRPS: it’s not interesting, it is excruciating. 

This article wasn’t an easy read for a person who lives with this condition or in general. The story was raw and real in its recollection of the girl’s suicidality and deep despair. I know that feeling. I could understand.

I shared this articles with several of my RSD sisters, and for those of us who have experienced programs like the ones described in the article, by the end of reading this piece we were feeling like we were fifteen again and meeting our parents by the PT gym at the end of the day. We too easily remembered our own puffy, red faces that were damp from crying, sweating, and working incredibly hard all day. We could feel our legs as wobbly as Jell-O from pounding the concrete stairs for “just thirty more seconds” over and over again. I was transported back to the days where I convinced myself I could do anything for thirty seconds. Later, this notion was expanded to “I can do anything for the length of one song” – just as long as it’s not Stairway to Heaven! As I was reading this article I could actually feel the roughness of a towel rubbing on my leg. I pictured the shaker machine – a machine meant to desensitize our bodies to vibration – and felt the heaviness of dread in my throat and chest. Honestly, it makes me shudder.

The truth is, this disease is horrific and the treatment isn’t glamorous or complacent. In fact, I remember coming home from the hospital after weeks of treatment protesting and boasting that my physical therapy regimen was more difficult than the gymnastics conditioning I complained about during every workout. I worked so hard for my recovery! I was thrilled to get back into my sport, but the emotional toll and trauma of this condition and the various treatments weighted heavily on me as I progressed through the rest of my life. I became one of those people who would do things “in spite of” my pain and to prove everyone wrong. During my physical recovery, I unlearned healthy limits and pushed my body too hard too often both out of fear of relapsing and losing everything I worked so hard to regain and out of sheer persistence – I had to prove to everyone and to myself that my pain wouldn’t stop me. I will never unlearn “doing too much” and I will always have a hard time differentiating between “good pain” and “bad pain”. Doing too much has been my emotional defense mechanism and my brick wall that has separated and protected me from the world ever since I was able to move freely, yet not pain free, again.

The problem with articles like this is that they present only one story and they’re oversimplified. First of all, the characterization of this illness as something that is common in high achieving girls makes it seem like we did this to ourselves. Or worse our parents’ ambitions for us got us into this mess. The article goes as far as to describe Type A overachievers as “one stone’s throw away from being a pain kid”. This simplification absolutely dismisses the severity and rareness of our lived experiences. For some of us, our bodies cope with stress in maladaptive ways – i.e., pain. For many of us, our capability to hone our Type A strengths is what helped us to overcome this debilitating out condition. We were taught to push through the pain. The mantra “If it hurts to do something, that’s what you should do” is how we learned to regain and reclaim our functionality. Discipline and commitment were the mechanisms by which we executed each day. Consistency is how we maintain our gains and continue to grow stronger. Those Type A characteristics saved my life.

In this intense program, we were taught to ignore the pain and prioritize functioning. It was the epitome of “fake it til you make it”. One person I talked to told me, “It was engraved in your mind as a kid that you have to act like it’s all fine but no one fully understands… that you’re not fine”. As I read this article I felt like my 3D, actual living body was squished into some 1000+ basic words on a page. A huge chapter in my life was minimized to a single story of one person’s “strange pain” that others might find “interesting” – my life and (my) pain became click bait. “Strange” is pathologizing language – one step away from “crazy” – that makes us feel less believed and like we’re making it up. This actual, legitimate pain is sometimes inexplicable and definitely described and experienced differently by each person, but regardless it’s tangible and all too familiar to me.

This isn’t the first time mainstream media has failed to adequately capture the lived experience of someone with RSD. In 2013, Dance Moms featured Nia’s experience with chronic pain. Nia’s mom says, “Nia says she has the pain but when she’s not thinking about stress… she’s fine… I think it’s in her head that something’s wrong with her feet… she has to tell her brain to shut off the pain signals”. This 2:20 segment of TV did not do Nia or our community justice. This mentality practically implies that we are choosing to live in pain. If it was that easy to just shut off our brains and decide that we are not hurting, then by that same logic many of us wouldn’t also have depression or anxiety. It is important to note that the comorbidity of these conditions is exceedingly high. The bottom line is: this is a real illness. We cannot shut it off. This simplification which occurred on a show that likely has a large audience of “high-achieving teenage girls” was a missed opportunity. Put another way, the public perception of this illness doesn’t align with how it manifests for everyone – with all our realities – and that’s harmful to us.

I realized this article and these “media moments” aren’t made for “us”. This Washington Post article wasn’t written for people whose doctors didn’t believe them, who have spent years warping their own experiences in their mind so relentlessly that they have convinced themselves they were faking it or that when they were feeling their worst it wasn’t really “that bad”, who felt like their pain and neediness tore their families apart and ruined their friendships. This article wasn’t written for people who know what it’s like to “lose what you are and what you love” and have to fight like hell to get some semblance of the life you knew back or worse, accept your new reality and deal with the implications or that – “even if – and especially if – it hurts”.  I finally realized this article was never going to be interesting to “us”.  And, it was interesting to “them” the same way a “freak show” is interesting at the circus. It’s othering and othering doesn’t take ever take the form empathy or compassion. It rarely even resembles pity.  It feels like on a smaller scale this article evoked the same thoughtlessness and naivety that “13 Reasons Why” did when it appealed to a privileged, untroubled audience, and “To the Bone” did for people who do not have explicit experience with eating disorders. Representing shock value at the expense or representation is irresponsible.

My painful disease reminds me daily that I don’t have control over my body and I will hurt physically and mentally sometimes just because the wind blows. However, I do have control over the choices I make each day about the life I lead and the way I love myself and my ambitions – fiercely. The article got one thing correct: “It is not as simple as “come for three weeks and now your life is all better.””

After all this ranting, I am left feeling energized by the possibility of a different conversation about “us”. My condition and my experiences living with chronic pain have shaped who I am today. I am hopeful to one day hear sentences like this, “this article was interesting to me because of what you shared about your experience. I want to understand you better. How do you relate to this article?” I will look forward to conversations that are powered by the curiosity to better understand my story and a willingness set aside expectations in order to make space for surprise, ambiguity, and maybe even genuine understanding.

What questions do you have? Let’s talk!

 

I am a “Runner”

I never identified as a “runner” until someone else named it for me. I described my weekly mileage, the feeling of invincibility, the restlessness I feel when I’m not running, and they named it – “you’re a runner.”

Over a year later, I still wasn’t convinced. My friend even explained to me, “You’re a runner. I’m just someone who runs.” The differentiation wasn’t clear to me. One seemed affiliated with an identity whereas the other was associated with a series of actions or behaviors. I’ve been grappling with being a runner (tossing around the hashtag (#runner) and seeing how I “stack up” among other people whom I consider to be “runners”) for the last fourteen weeks. I’ve lamented over long runs, skipped out on social plans to get up early and run, thrown tantrums during taper week, and logged several hundred miles.

I am a “runner”.

A year ago, I wrote that I didn’t care that I didn’t finish a half marathon. In the grand scheme of things, I didn’t. Today though, I completed my redemption run! I finished the race that got the best of me a year ago, and I got a PR! 

I told a friend who asked me about the race the following:

Well, it was perfect. I felt amazing. I was so strong and confident. I didn’t psych myself out at all! My mindset this time was so different for the training and everything – 3rd time’s a charm I guess! Hard to explain, but I learned a lot this time around. I am overall so much healthier than any other time. I like that feeling – it took a lot of work. I am really proud. I’m just excited to feel so great. It’s refreshing!

I never thought I’d talk about running like that! These days I rely on expected consequences of running like “runner’s highs” and the sense of camaraderie I feel when another runner nods at me when I’m out on my course. I talk about my workouts and training goals using lingo like “negative splits” and “form drills” because I know what those things mean! Settling into running as a hobby as opposed to a compulsion or as an act of punishment/retaliation has been a long, difficult journey. I’m so proud of where this journey has taken me!

It’s never easy to train for a race when you’re prone to compulsions, have a chronic physical illness, and have a history of regimented behaviors around food and exercise. This type of training took a special amount of conscientiousness. Trust me, intentional focus on my behaviors and my motivation, and a healthy relationship with food and exercise were essential to my success.

As I was reflecting on the past fourteen weeks of training and mental preparation, objectively there are several things that made a difference for me.

Here’s my recipe for success:

Ingredient Specifics Dosage
Food High Protein and Healthy Fats; No Carbo Load 3X Every Day
Water  Just Water. 12 oz.; 3X Every Day – Or More!
Caffeine Coffee w/ Truvia and Milk No More Than 2 Per Day; Not After 11 AM
Sleep White Noise Machine Allocate 8 Hours Per Night
Weighted Blanket Use When Sleeping Every Night
“Naked” Runs No Tracking, No Timing. Just Run! Once a Week
Amazing Grass Supergreens and Fiber Before Food or Coffee 1X Every Day
Alcohol Any None 2 Weeks Prior to Race

[ Note – Inevitably, different strategies will help others feel successful. This approach worked for me. Find what works for you and stick with it!]

Primarily I believe I was successful because I stayed committed to my training plan, forgave and forgot missed or bad workouts, and celebrated the small victories as well as the big ones. And also because… cross-training. I can’t stress this enough. Cross-training made ALL THE DIFFERENCE.
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A lot changed for me during this training season. For example, rather than simply thinking of food as a necessity after a long run to replenish lost calories, I started relying on a consistent strategy for meals so that I could feel nourished and energized for my workouts during the week. The mentalities, “calories in, calories out” and, ” I run so I can eat” were both replaced by the simple, yet sometimes hard to digest (pun intended), concept that food is fuel. I ate food that made my body feel good and strong. I used my bullet journal to keep track of my meals and sleeping patterns; this mindfulness strategy helped me stay accountable to my training goals.

While there were several concrete ingredients to my success, on a subjective level there were also critical connections, realizations, and mindset changes that helped me feel successful.

For example, during one of my more difficult runs rather than struggling through, trudging along, and wondering “Will I finish?”, somewhere along the way, I started to think, “I will finish!”. This epiphany hit me like a breath of fresh air; it felt light, crisp, and perfectly necessary. I can’t quite explain it, but this realization empowered my mind and my body. I finally knew I could do it; there was no doubt in my mind that I would finish the run even if it was incredibly challenging. From that moment on, my training felt lighter and less burdensome. A heavy hunch that I might fail was lifted from my mind, and I felt like I could trust myself and my body in a way I never experienced before.

In that moment, running no longer felt like an obligation. It felt like it was a part of me – like a feeling rather than a task. In that moment, mileage or minutes didn’t matter anymore. I learned that I don’t have to race every run and often I’ll be better in the long run (pun again) if I listen to my body and respect all the cues it’s giving me about how to feel and be my best.

That was the moment I became a “runner”.

Changing my thinking during that run granted me confidence. Moving forward, I knew I was capable of accomplishing whatever I set my mind to – as long as I was consistent and intentional. The plan mattered that’s undeniable, but it didn’t matter just and only because it was “the plan”. It mattered because it was the right combination of training, self-care, and confidence – it was my recipe for success.

I did not experience that kind of freedom when I prepared for or ran my other races. Now, rather than running to grasp a sense of control, or running out of compulsion, I run because I want to and because I believe in my own strength! I run because I can.

I no longer see running as just a test of endurance. It is also a test of my preparation and self-care, and I am always going to be up for that challenge!

 

The Truth About A Spoonie Surge

I’m flying!

For the past four days I’ve felt practically excellent! I ran farther and faster than I’m used to, my pain is tolerable, I feel nourished and well rested, and my anxiety is relatively quiet!

Today, someone asked me how I was doing. I excitedly said, “I’m good!”

They looked shocked. My typical response is “Okay [sigh]” or “I’m good, but tired.” So, they asked me, “What’s going on?” I replied that I’m just good and followed with, “it must be a surge”.

A surge for me is when everything falls into place. I am catapulted up just a bit higher than usual. My disposition is literally sunny and optimistic. I basically feel unstoppable, and I do ALL the things. I’m super productive, high energy, attentive, and efficient. I’m like a bolt of electricity [yep – I went there!].

I don’t usually wonder why a surge happens, – it could be the weather, a good conversation, a restful night’s sleep – but especially after a few days I always worry about when it’s going to end, and how hard the crash will be.

You see, if I ride a surge for too long, there are consequences.tumblr_nskfoej3891qzbifxo2_r1_500

Usually these consequences are the result of me pushing my body too far. When things feel good, I feel like I could literally burst through a brick wall without even a scrape or a bruise. I almost always challenge myself too much on good days. I almost always forget to respect my body’s limitations and needs. It always feels good in the moment – I like to feel invincible.

At certain turning point, usually at the climax and right before I start my descent toward an inevitable crash, the idea of how badly my actions are going to hurt comes into my cognitive awareness. A mental space once occupied by the joy of feeling light and energized turns to a cyclical sludge-like head fog. My anticipation of the “crash” [which sounds something like, “It’s going to be so bad I’m going to have to call out of work. Ugh. Whatever. It’s not going to be that bad; I’ll just power through and be “fine”. I’m always fine.” on a loop] is almost always an accurate prediction of how badly I’m actually going to feel. It usually feels like a Mac truck ran over me – twice. That’s how I often describe how much it hurts when I finally find the ground again.

I can get caught in the trap of a good day, overdo it, and tumble dramatically into a “typical” day or even a flare pretty easily if I’m not careful.

After a while, my mind starts to play its own twisted version of self-sabotage. It plays a game of second guessing and trying to precisely identify when the tides will change and the calm will become the storm. During these moments, I think things like, “do I feel as good as I think I feel?”, “This is the peak; it’s all downhill from here.”, or even “I don’t deserve to feel this good.”

When you’re a spoonie, you have to simultaneously think, “how can something that feels so thrilling also be foreshadowing something so bad?”, “I can’t fully enjoy this because I’ll pay for it later”, and, “I can’t just sit around impatiently waiting for the pain to come back. I need to capitalize on this opportunity and do all the things because I feel so good!” Sometimes on a good day I don’t even remember those seemingly interminable stretches of pain – the ones I thought would never end. Other times, I’m sure the good day won’t last, but also I definitely don’t want to be miserable.

I’m not asking for my pain to come back! I’m just sure that it will.

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How do I reconcile the ping-pong-like thoughts in my mind?  It is literally mind boggling.

If left unaddressed, these thoughts can spark some anxiety. Anxiety sparks a need for control. A need for control sparks compulsions. Compulsions, right now, look like increased exercise and attention to food. Increased exercise and attention to food result in exhaustion and pain. Exhaustion and pain cause a need for more sleep. Sleeping while anxious and in pain is an incredible challenge. Which, ultimately means that I’ll be perpetually anxious and exhausted, and possibly risk a flare up until the next time I catch a surge. Which could be weeks or months, and that ambiguity, that yearning, causes me more anxiety.

But, in the meantime, I’m going to soar for as long as I can! Today I feel good! We’ll see what tomorrow brings!

 

 

I Didn’t Finish a Half Marathon and I Don’t Care.

13.1 miles is an arbitrary (stick with me) number of miles. If you run them it indicates what? That you can run 13.1 miles? Yes – actually! And, that’s all it says. And then you get a medal, literally, to say you did a thing. And apparently you’re worth more? You’re more of an athlete? You’re more fit? I don’t actually know what it means. It means you spent time training to do a thing, and you did it. Then you get to tell people?

I never identified as a “runner” until someone else named it for me. I described my weekly mileage, the feeling of invincibility, the restlessness I feel when I’m not running, and they named it – “you’re a runner”.

Running saved me. It gave me clarity and space. It gave me strength. Until it didn’t.

A week ago I tried to run a half marathon after having been sick that morning. If you know me, you know it takes a LOT to convince me not to do something. So, despite having been sick, I was determined to run. I trained, and I was ready. I was confident! I expected to finish – there was seriously no doubt in my mind. The adrenaline kicked in, and I was off. I told myself, “I can do this”, and tried to be completely in the moment. Miles one through seven were great, but then the adrenaline wore off and my sickness took over.

Simply put, I don’t remember miles seven through ten because all I could focus on was the unbearable pain I felt. I was dizzy, sick, scared, lonely, and weak. I never wanted to associate those feelings running ever again. I knew was better than that! I was also really sick, and pushing myself past my limits.

This part of my story does not end at the finish line. Instead, it ends with seven hours in the ER. A diagnosis of excessive fatigue, among other things, kept medical professionals watching my BP rise from dangerously low levels, my temperature drop back to normal, and several bags of fluids rehydrate me so that when I left I was only mildly dehydrated. And then, the minute I got home, I burst into tears. I felt like I couldn’t breathe or face the world. I felt like I let people down. I felt like there was an expectation I did not meet.

The choice to stop running wasn’t a choice. It was a necessity. It also wasn’t because the race was too hard. Let me make that clear. However, I cannot explain that to each and every person who asks me, “how was the race?”

What’s been more challenging than knowing I didn’t finish is the pity and shame. Seriously, the pity is crushing me. I’ve heard, “you only had three miles left” or “you’ll get ‘em next time” as if 1) I didn’t know the length of the race or 2) I just decided to throw my hands up and quit because it was too challenging. Not surprisingly, these comments came from people who aren’t runners. Still, their condescending remarks are getting to me WAY more than not finishing.

I didn’t finish because I was sick. I could have finished. I was ready. I am strong enough. My persistence is my most powerful quality. If I set my mind to something I WILL do it – unless there’s an incredibly compelling reason not to.

Anyway, those unmet expectations are perpetuating my feelings of worthlessness and guilt even a week later. I feel guilty! I’ve spent a week in bed feeling sick, embarrassed, and scared to run. I’m mad because of how not finishing looks to other people, and because of the assumptions that (I feel like) people are making about me. If you know me, you know a challenge ignites me, and I don’t quit. Quitting isn’t my style.


Often, I recall the years when putting one foot in front of the other and walking heel to toe seemed impossible. Relearning how to walk is one of my biggest accomplishments. It follows that I feel a similar sense of immense pride knowing that I’m overcoming all of that and re-envisioning strength in a way that is entirely and only for me – regardless of whether or not I finished the race.

I started running because it was the most brutal, ruthless, clearest way, aside from being a competitive gymnast, I could think of to tell my chronic pain that it isn’t in charge. Running is how I’m reclaiming my body. When I’m running I’m in charge. I’m strong, powerful, and triumphant. I actually don’t care that I didn’t finish the race – others shouldn’t care either! I recall too distinctly a time when I couldn’t even walk. Each step I take is something I do for me, not to prove anything to anyone else. If I have to prove to anyone that I’m strong and capable, they haven’t been paying attention.

 

 

“I Used to Wear Clothes That Were Too Big For Me Too”

“I used to wear clothes that were too big for me too” – someone said that to me this week! They also said, “Your pants are too big” and “you’re so skinny; are you losing weight?”

My responses: “Okay”, “I know”, “Depends on the day” respectively. I wanted to scream “WHY ARE YOU FIXATING ON MY BODY?!?!”

Writers find their inspiration from anything; it could be a conversation, an observation, a “thing”, a book. You name it! So, I heard those words and instead of calling out their fixation with my body, DAYS later I’m still fixating on them. Since I’ve lost weight, people aren’t as impressed with ME. They’re impressed by my body. They ask me how I did it. They compliment my looks rather than my accomplishments and my incredibly determined, quality-driven work ethic.

Until now, the only time I can remember people commenting on my body was to tell me to I was too big. As a teen, I was a 4’11”, size 16 gymnast. I was also a person living with a chronic physical illness – go figure! So, needless to say, my relationship with body was anything but “typical”. Thanks to BMI, I had doctors telling me, at 16 years old and 182 pounds, that I was morbidly obese. I hated shopping (still do). Buying clothes felt like being pushed on the ground every time I finally stood up – nothing ever fit (still true). I didn’t even want to go to prom because I couldn’t stand the thought of having to find a dress!

My mom thought if I found a dress I felt confident and beautiful in that I’d change my mind (she thought I’d find that same confidence and beauty after my second breast reduction too). She routinely told me, “You’re beautiful no matter what.” Her words, although I knew they were sincere, felt empty. What I recall of those experiences are shopping trips that felt interminable. I tried on dress after dress (or every colorful, lace bra in the “regular” stores I could finally fit into) with increasing disappointment. There were so many tears.

So far, I’ve hated my body at every size – and not just because of my size.

Now, I’m trying to practice body positivity – which is something I support and encourage for everyone. For me, it’s really difficult to embody that line of thinking. I’m working on body neutrality instead which Melissa Fabello describes as “the acceptance of our bodies as-are, for the understanding that we are already enough”. When you call me “skinny” what I’m really hearing you say  is “I’m more interested with how you look than who you are” or even “I’m grounding my perceptions of your worth in your looks”. Those comments – what you think are compliments- don’t make me feel any happier or proud of myself than the relentless notions of necessary change I was pressured to pursue as a teen made me feel disappointed or imperfect. I hate when people call me “skinny”!

Regardless of my turbulent relationship with my body, one thing has remained constant: I am an athlete. I started drastically losing weight when I began searching for sanity in exercise. I felt lost. I felt out of control. The adjectives I used to describe myself – evidence of my perceptions of my self-worth – felt so far away. My focus, motivation, support, was gone. Running saved me – it still does- from hitting absolute rock bottom (I’ve been close!). Eliana Osborn shares “[she] felt purposeful and strong… While [she’d] been running, [she’d] been alive. Not [her] best self, but [herself]. Without it, [she] struggled to exist.” I can so relate! When I’m running, I feel unstoppable. I feel invincible. I’m inspired to explore how fierce my body can be. For minutes, moments, the world stops spinning and there’s clarity. I feel so in charge. It’s a feeling I’ve missed. It’s like I’m winning the never ending race to find myself. The faster and harder I push myself, the closer I get to the finish line. I’m picking up clues along the way. I know I’ll get back there soon. And so, I feel like I need to keep up my athleticism – so I can find control. Which means, I may lose more weight.

Being an athlete is my hidden weapon. It’s what I pull out in moments of self-doubt to prove to myself (and others) that I can do it – that I’m good enough! It’s not about being “skinny” or looking “fit”. My body is amazingly resilient and strong. It’s also been fat, skinny, deprived of nutrition, greedy, exhausted, caffeinated, and a whole host of other things.

When you call me “skinny” you’re indelicately weaving together my ideas about my strength and resilience and your pervasive, hierarchical, and restricting beliefs about “what is “normal,” “real,” or “correct.”  Please stop!

15 Good Things From 2015

Everyone’s positive energy building up to the New Year is absolutely contagious. I want to join!

Here’s my list of 15 good things from 2015:

*not in chronological order or order of importance*

  1. I was awarded a Chapter Distinguished Service Key (DSK) in Alpha Phi Omega (APO): Upon receiving this fraternity honor I wrote “I feel like this statDSCN4702us should go something like “It was the best of times, it was the worst of times…” or “nobody said it was easy…” but actually, in all seriousness, it was truly an honor to be awarded a Chapter DSK today. I am so thankful for the wonderful experiences I’ve had as an active Brother and I cannot wait to continue to serve with APO as alumni!” Just a few weeks later I was offered a position on Region 1 Staff! This fraternity has given me more than I could ever ask for. APO continually shows me the the meaning of brotherhood in ways I can’t explain. I made some of the best friends and learned some of the most important lessons and skills of my life.
  2. I went on Birthright and spent my 23rd birthday in Israel!
  3. I finished my honors thesis: but really 53 pages later! This seemed like an impossible task made manageable only by consuming inappropriate amounts of coffee and working ALL THE TIME. I still don’t know how I did it all. Before this project, conducting my own research seemed like a task that was beyond the scope of what I expected I could accomplish as an undergraduate; my advisors’ commitment to me and my project convinced me otherwise and showed me that I can accomplish more than I expect. Having an advisor who saw enough value in my ideas and capabilities to believe in my project was imperative to the success of this work and was necessary for me to grow both academically and personally. My confidence and pride was ignited because she didn’t tell me no. Rather, she pushed me each day to excel. This project not only taught me the research process but was instrumental in creating a foundation for both my future professional and academic interests. Now, I want to be a researcher! Of course, none of this would have been possible or as fun without my amazing HDFS honors cohort. We were a great bunch and I loved every minute of our learning and lamenting together.11149684_10204024050981885_3863601930795783864_o
  4. I became a runner: I used to have a witty excuse as to why I hated running. I’d say, “it’s physics. It’s just logic. If you start where you end then you’ve displaced nothing. So, why would I run if displacement says at the end I’ll have accomplished nothing?” I clearly didn’t really understand running or physics then. I still don’t understand physics. Now, whether I’m running to escape or running to gear up to something, running is important for me. It gives me time to think. It gives me order, control, discipline, expectations, freedom, and strength. Some days, the best we can do is put one front in front of the other and face the day. That’s what running has taught me. There are no unconquerable obstacles, just different paces with which we overcome them. On June 4th I posted this photo [yes on Facebook] and pulled the caption from the first time I publicly shared this picture during my senior year of high school public speaking class last lecture. I wrote, “In the face of a challenge, face it. You never know what you can do until you try”.Then there were sentiments of continuing to persevere until you 11351330_10204410118993344_5105233088170803531_nreach your goals and never stopping until you achieve what you want. Apparently my 18 year old self was more attuned to grasping at opportunity than I realized and, I may never learn to stop!

    What’s even more important (and timely/relevant) about this picture is this: it’s the first time I ran and triumphed over RSD (circa 2007).  And now, I consistently surprise myself by running farther, faster, and longer than I have in my entire life. Not pain free but, still confident and owning it! In 2015, I tracked 426 miles and ran a 10K (6.2 miles) in 1:04:47.

  5. I was published on The Mighty! You can read my piece: The One Statement I Want to Hear From Loved Ones About My Invisible Illness here. [Side note: I have a forthcoming  piece on Ravishly – I’m really excited!]
  6. I started this blog! When I started this project I said, “I’m starting this project to make space to wonder…I’m also using this blog to find a space to reflect. That’s a word that wasn’t in my vocabulary a year ago but, many great mentors and conversations later, I’m craving that necessary “me space”. However, not even my best mentors or friends would willingly sign on to interact with my every thought, question, challenge, insight, funny link, or freak out moment. So instead, there’s blogging. ” I’ve grown to love exploring and thinking on things. Sharing my work has been exhilarating and making connections through my writing [and my online community] has shown me that even when I’m feeling lonely there’s someone out there who “gets it”. My list of “things to write about” is growing longer and longer each day. These days, you won’t find me without a notebook in hand in case something sparks an idea. It’s been a risk, it’s still a risk but, I’m really loving this project.
  7. I learned about the importance of relationships and gained some amazing friendships: And of course the only appropriate comment here would be from Grey’s, “We’re friends, real friends. And that means, no matter how long it takes, when you finally decide to look back, I’ll still be here.” – Grey’s Anatomy
  8. I practiced saying what I need, asking for help, and being a better communicator: I started with being okay with things not being “okay” or “fine”. I found an outlet through writing and some great, trustworthy friends to express myself more honestly without worrying about being a burden or being a toxic friend.
  9. I graduated from UConn!  It’s true, some of the best learning happens outside the classroom. At UConn I was challenged, pushed, mentored and questioned both inside and outside of class. Rather than feeling inadequate or frustrated I was inspired and thankful for all that I learned and all the ways I grew. At UConn, I truly thrived! I felt supported and confident. I did it all and then some and, I had an amazing network of friends, mentors, advisors, and professors encouraging me along the way. This quote rings true for me and is so applicable right now, “I’ve learned that home isn’t a place, it’s a feeling.”― Cecelia Ahern.  I miss UConn *literally* every day and I am SO proud to be a  Husky!
  10. Logically what comes next, I started at Brown University in the Urba10360465_10204185744024110_6042675827618780031_nn Education Policy Program: While this hasn’t been the BEST thing in 2015, one thing is certain, (in a paradoxical way) I know that if I never came here and if I stayed at UConn I wouldn’t ever know that I truly didn’t like it. I mean, beyond speculation. Also, and I guess obviously, the things I don’t like aren’t the things I was most nervous about so I suppose there’s value in that too. Regardless, I’ve had some amazing opportunities here to continue to grow as a researcher and an academic (whatever that means). I also learned the value of networking and connections beyond the colloquial saying “it’s not what you know, it’s who you know”. I’m working hard and making it work day by day.
  11. I fell in love with stories and great conversations: I traded social media connections for authentic, personal connections and I couldn’t be happier with that choice. I’ve been listening a lot and also searching for those stimulating conversations that ignite wonder and create more opportunities to learn. The kind that leave you thinking and questioning long after the formal discourse has ended. I craved thinking critically and conscientiously. I’ve learned that when you’re open to allowing a conversation to change your perspective and you’re a partner in creating the space for meaningful, intentional interactions you’re facilitating change. Hence, this year, I adopted the use of the phrase “thought partner” in every, even sort of, appropriate context.
  12. MUSIC: Just music. But really, from country concerts and Broadway musicals, to the sounds and spirits of Kabbalat Shabbat I was reminded of and gained a new appreciation for the ways in which music connects us and fills a room (or a person) with such unique energy. Music fills the quiet space that so often feel lonely. A quote from one of my favorite movies August Rush seems appropriate here, “You know what music is? God’s little reminder that there’s something else besides us in this universe, a harmonic connection between all living beings, every where, even the stars.” SO TRUE! And of course, Taylor Swift gave me more reasons to love her. Including most recently, topping DoSomething.org’s Celebs Gone Good list for the fourth year. Gotta love her!
  13. I traveled! In 2015 (and the last days of 2014) I went to the APO National Convention in Chicago, Israel with UConn Hillel, New Orleans with Honors Across State Borders, NYC, the first ever ParentCampUSA at the U.S. Dept. of Education in D.C., and more!
  14. I recognized and reclaimed my body: It’s easy to learn to ignore  your body when you’re living with chronic pain. Too much attention to your pain can be detrimental because then you can get stuck focusing solely on your pain. We’re taught (in the chronic pain world) to find ANY strategy to ignore the pain and distract ourselves. In 2015 I reclaimed my body and grew stronger! I’m more physically fit than I’ve been before. I pursued strength for me – starting with an earnest desire to be able to run a mile. Rather than my pain owning me, I owned my pain and I was in charge of my body.
  15. I accomplished everything I wanted!  2015 was the year of doing too much and not knowing how (or when) to stop. With coffee as my lifeline and internal motivation I didn’t even know I possessed (once described as a glowing purple ball inside my body that was constantly radiating energy, and another time described as “robotic” – as I operate with the same amount of energy an11008595_10204092958784537_8915779519335960414_nd efficiency at all times) I did some amazing things! And, perhaps more importantly, I learned that I am more than the list of accomplishments that fill up my resume or the things I do each day to feel productive or worthy. With the encouragement of some amazing mentors and lots of hours spent thinking (reflecting), I found myself when I intentionally took the time to critically consider my experiences.  I started attributing credit to myself for my accomplishments rather than luck. Told myself “I earned this. I did this. I am good enough” and slowly I started to believe it. Judith Bulter wrote, “life histories are histories of becoming” and that notion has been a driving force compelling me to consider what I’ve experienced and why it’s been influential in my life rather than just considering how it’s going to propel me on toward the next “best” thing. I am done quantifying my success by how others view my accomplishments. This year rather than reaching the top step and turning around to find 15 more steps to climb I’m standing proud on the top, looking down with satisfaction, attributing value to what I’ve accomplished, and just letting it all soak in.

Happy New Year!

I Believe You – Color The World Orange Day

Today is November 2, 2015. It’s also Color The World Orange Day! Color The World Orange is an annual event held the first Monday of November to spread awareness of CRPS/RSD.

RSD, which stands for Reflex Sympathetic Dystrophy, is something I’ve lived with each day for more than 10 years. It’s a chronic pain condition. Basically, my nerves constantly (that means all the time) signal to my brain that I am experiencing pain in both of my legs from my toes to my thighs. The cycle never stops. That means, I live in pain all day, every day.  When I tell people this, I usually get the following questions/reactions:

  • “So how Reflex-Sympathetic-Dystrophy_1024x1024can you do ALL those things?”
  • “Wow that’s so impressive that you’ve accomplished so much even with this condition”
  • “Does it really hurt all the time?”
  • “Is it a psychological thing”/ “Is it all in your head?”
  • “It must not be that bad.”
  • “Can’t you just take medication?”
  • “You don’t look/act/seem sick.”

These statements are so incredibly frustrating to hear! My illness does not define me but it6c8e3bea9c73a0237d96592aaa02a506 is a huge and REAL aspect of my life. Instead I’d rather hear “I believe you”. Living with an invisible illness means that if you choose to tell people about your condition you constantly have to convince people that you’re struggling. Why is that? Why do I need to prove myself to anyone else? Similar to mental illness, chronic, invisible, physical illnesses are challenging to confront each day.  And when you identify with so many other things (yay intersectionality!) in addition to your chronic illness those who judge have a hard time fitting the pieces of your life together. Apparently, if it doesn’t make sense by their logic, it must not be real.

For a9490d6128d485966fed12d135823d23so many people living with chronic illness, we put up a front. Each day we go out into the world attempting to convince others (and ourselves) that we’re “fine” or “normal”. We have to, because we cannot allow our condition to control our lives or confine us. We can achieve and be excellent despite of or in the face of our chronic condition. Each day, we face a demon that wants us to stay down. It’s a demon we have to overcome. But what’s challenging is that even when we give off the appearance of being “fine” we’re struggling.  And then, if we’re successful, people assume we are fine. What complicates this is that once they assume you’re fine they have a difficult time hearing that you’re not. And when they do, their disposition toward you turns to pity or astonishment. The truth is, if I were to be honest about how much pain I feel each day it would likely make others uncomfortable. When I do tell people, they’re impressed by me. Don’t be impressed by me. Please. This is just who I am. We all have things that challenge us and shape our identities. This is one of mine. Instead, please accept my story and take this as an opportunity to learn more about the multiple dimensions of me. I live in pain each day and I’m incredibly good at putting up a front. Sometimes this gets me in trouble because I’ve gotten pretty good at ignoring my physical (and sometimes mental) obstacles in order to live a “normal” life and do everything I expect for myself. Sometimes that makes me work harder and push myself more. I can’t allow my pain to rule me. I have to literally triumph over pain and then some each day. The extra bit is to prove to whomever that I am more than my diagnosis and that my accomplishments are above and beyond simply “in spite of my condition”.

As I mentioned, when people find out you have a chronic illness their disposition toward you changes. Your accomplishments (the ones others use to craft their opinions of your success or worth) are elevated because we extend sympathies to those who “own their struggle” or because we can’t relate and we feel uncomfortablewhat-is-a-spoonie so we attribute praise. I’m just me. I’m one ordinary person with this specific challenge and I’m here to say it’s a constant part of my life but it’s not the only part of my life. I’m a Spoonie. In some ways, I need to be constantly aware of my daily obligations so I don’t burn out. Burn out is real. Running out of spoons is why I often “quit” at 9:30 PM these days. But that’s my reality.  And, all you get to do is accept that and support me. You don’t get to judge and decide for yourself based on my actions how severely I’m suffering or how real my pain is. You don’t get to decide for me if I’m making this up. You get to listen and validate. And gosh! Validation feels so good! Validation sounds like “I believe you”. It sounds like “what do you need from me”. It presents like genuine understanding.