The Man Behind the Curtain

Pain does not equal damage.

You are more than your pain.

These ideas are easy to understand, yet difficult to adopt. Imagine if we (patients and practitioners) could embrace these attitudes. Imagine if we cohesively united to change how we think about and treat chronic pain. Imagine pain no longer as a nebulous force in our lives, but a defined and logical biopsychosocial process.

I am currently attending the Combined Sections Meeting for the American Physical Therapy Association (APTA) and listened this morning to Dr. David Butler and Dr. Lorimer Moseley's "Explaining Pain" lecture. What an experience! It took them less than four hours to shake my fundamental understanding of chronic pain. One of the topics they broached was utilizing and choosing the right metaphors when explaining pain. Looking back over my writings, I am slowly realizing I took the wrong approach when discussing my pain. Remember this poem I wrote? It was one of my favorites because I thought it perfectly represented my inner battle:

In the Ring

My life is a constant battle
of bruises and bullies.
Are you fighting too?

Remember, dear friend.
Our scars do not deform us,
they define us.

Go another round.
----------------------

At the time, this poem made perfect sense to me. I was a fighter, I was strong. My body was a battlefield and I would fight pain to the end. Herein lies the problem. How can you win a battle against yourself? This warrior metaphor is detrimental to our healing process. If we expend all our energy fighting ourselves, how can we begin to heal ourselves? It reminds me of The Wizard of Oz. We need to look at pain less as the booming and flashy "Great and All-Powerful Oz," and more as the man behind the curtain. We need to get close and see pain for what it really is, instead of standing back and marveling at its power. We need to stop giving strong metaphors to pain and building it up to be some large force we are waging war upon. It's time for the lights and smoke to dissipate and time to become better acquainted with our pain.

It's a scary thought- to become better acquainted with your pain. You make it out as some great enemy, yet the only way to defeat it is to befriend it. After listening to the Explaining Pain lecture, I reflected on my fight with pain and realized it should be my pain journey. I started feeling better a year ago when I was a semester into my physical therapy program. Yes I had several surgeries, PT, prolotherapy leading up to that point that contributed to my relief, but I also had the power of knowledge that school provided. I was forced to look at my pain systematically, to understand what was hurting where and how I could strengthen or stretch the affected muscles or quiet the spasms. I learned to reduce my stresses outside of school, to work on my relationships with family and friends, to attend yoga classes regularly... to start loving my body and stop seeing it as a battleground.

There is still much to be learned about pain and its process. But it is time to stop fighting our own bodies, and start fostering understanding of why we experience pain and what we can do to lower our contributing factors. Wizard of Oz writer L. Frank Baum told us, "Pay no attention to that man behind the curtain," but that's exactly what we need to do.

Birthday Wishes

For the past 5 years I have stared at the candles in front of me and wished for the pain to go away. There were even a few birthdays I refused to leave bed because I was so defeated. Last year my pain levels drastically improved, but I still felt unsure about the future and scared of flare-ups. I was also still going prolotherapy and wasn't sure how many more treatments I'd have to endure.

I used to be frightened that I was in control of my health decisions- what doctors to see, what treatments to try, what medication to take. I wanted a magical fix, someone to take control for me and make it all go away. I didn't realize that I was the one who needed to be in control, needed to be proactive, needed to make lifestyle changes to maintain my health. I have finally accepted there is no singular solution. My body necessitates daily stretching, vigorous exercise, proper nutrition, mental strengthening, and commitment. I am completely in control, which no longer frightens me but empowers me. Not only has this experience shaped my professional life, but it's given me a greater quality of life. I am currently in the best shape of my life, and getting stronger every day. When I do have flare-ups, I know exactly what muscles are tight and what combination of modalities and stretching I can do to abolish the symptoms. Pain is no longer this nebulous and exhausting cloud weighing me down, but an identifiable problem I can fix.

I have been so focused on my health and school that I forgot to make a 5 year anniversary post. As I scroll back to my earlier posts, I cannot believe how much I have been molded and reshaped. It has and continues to be a transformative process. I have met some incredible people along the way and continue to be inspired.

What's even more incredulous to me then turning 25 tomorrow is that when I stare down at those candles, for the first time in five years, I won't know what wish to make.

Truth's Illumination

  

One glowing flame can

light a hundred candles,

and then a hundred times

a hundred more. I pray to

be such a flame, my illusions

giving fuel to what is real.

Light recognizes light,

and leaps to meet it.

May this sweet contagion

increase until light prevails,

and we all live in the

glow of truth’s illumination.

         Danna Faulds

Pain's grasp

I promised more updates and exciting news over this winter break which has come and gone. However, circumstances arose and people very close to me needed my attention and care. Now I am back in school, starting my second semester and don't have the free time I need to begin my project. What I hope to put together my next break is a small collection of poetry, entries, and thoughts I have developed over the years living with pain. It's not to be simply a motivational book, but the journey one goes through when suffering. I have found my best companion during the worst times to be quotes and poems and books and hope to generate a similar companion for others to have. Anyway, that's a small glimpse of what's to come.

Like always, a lot has happened since I last wrote. I did in fact run that half marathon I was training for and I treasured every mile. After all the surgeries and invasive treatments, I was elated to see my body perform and enjoy itself. I remember the days I hobbled around the kitchen table, where each step seemed to be a mile.

Last semester I continued to see a pelvic floor specialist at UPenn and was very impressed with my results. It is amazing how much physical therapy has lowered my pain levels. Unfortunately the therapist I was seeing moved to a different practice recently. I am currently looking for someone new, but it is difficult to balance with my most challenging semester ahead of me. I have been focusing more on maintaining pain levels myself. There are numerous stretches I do for my hip flexors and piriformis. I'm avoiding sitting for long periods of time, especially on uncomfortable surfaces. I am also spending more time doing yoga and utilizing my stim pack on my piriformis to get me through lectures. It's also a big help to have my boyfriend or good friends use their elbows to work on my trigger points.

Things have been going very well, but this past week was a bit of a setback. I think it was a mixture of starting a new semester, dealing with different stresses, and even the weather outside. I had more pain than normal and I was a bit depressed (mostly from feeling the pain in higher intensity.) I found myself retreating to my room and lying on bed, submitting to pain's grasp. Sometimes I don't feel strong enough to fight it off. Mostly I am tired that I need to actively fight it off every day. Don't get me wrong- I have been so happy the past year and things have changed significantly. It's just difficult when pain slowly creeps back in and takes hold of you. I know there's many people out there who know the feeling for many different reasons. I think it is important to know that you don't have to be strong all the time. It is okay to be upset and think it's unfair. All of us have moments we break down. What makes us strong is getting back up in the morning and tackling a new day. Sometimes we need help. But ultimately we lift our own heads back up and keep going.

"...Yet if I could instruct
myself, if we could learn to learn from pain
even as it grasps us    if the mind, the mind that lives
in this body could refuse    to let itself be crushed
in that grasp    it would loosen    Pain would have to stand
off from me and listen    its dark breath still on me
but the mind could begin to speak to pain
and pain would have to answer:

                                                 We are older now
we have met before    these are my hands before your eyes
my figure blotting out    all that is not mine
I am the pain of division    creator of divisions...
                                               And remember
I have no existence    apart from you"

from Splittings by Adrienne Rich in A Dream of a Common Language

The Road

I'm training for the Philly half-marathon and had to do my eight mile run today. It's beautiful out, but it still took effort to drag myself out the door and off to the Schuylkill River. I've never run eight miles before, and it can be difficult to get motivated if you're running alone. I got on the trail and the road seemed endless out in front of me. As my feet hit the pavement, images flashed through my head of the past four years. Recovering from each new surgery, re-learning how to walk three separate times. Each time I would drag myself out the door and hit the trail on crutches, a cane, and finally my own two feet. During those times, the road seemed endless too. I felt as hard as I tried, as strong as I was, I could never reach the end of that road. All I could do was keep my head down and power through each step.

Today the sun was out and the leaves were turning, and I kept my head up to absorb everything around me. The river ran along next to me as I traveled further and further. And would you believe somewhere around mile 4 a monarch butterfly flew along with me for a few seconds? If you recall this post from almost exactly a year ago, you'll understand my life continuing to come full circle.

The road used to be so frightening to me because it was boundless and I never knew when or if I could get off it. Now I'm realizing that's the beauty of it. The road stretched out in front of me and I released my feet and just ran. For the first time, I enjoyed how limitless it was. Because this time I could keep running.

Transitions

My life is currently in a series of transitions. I'm transitioning from suburban life to city life, from a familiar home to a new apartment. I'm transitioning from an employee to a student. Most importantly, I'm transitioning from a patient to a practitioner. Granted this transition will take me three long years, but the process is beginning. The problem with transitions is you cannot simply forget the past.

I'm having some difficulties moving from the patient mindset. This is because I still have pain and frustrations about what exactly is occurring with my body. Sitting through classes is quite difficult at times. It seems like my piriformis muscle refuses to relax, no matter how much I stretch it, stim it, or ice it when I get home from school. I'm looking into pelvic floor therapists in Philadelphia and will hopefully find some time to make improvements.

Don't get me wrong, my pain levels have tremendously decreased from a year ago. The combination of hip and pelvic surgeries, as well as the proceeding physical therapy and the intense prolotherapy injections into trigger points have made the pain much more liveable.

I think today was an especially emotional one because we covered the pelvis and pelvic floor muscles in Anatomy class. On the one hand, I was ecstatic because it's structures and muscles I'm so familiar with, which will give me time to catch up on previous lectures. On the other hand, it was difficult to sit through- mentally and literally. When we talked about the ischial tuberosities, I was more aware of the pressure and pain emanating from my own sit bones. When we talked about the pubic symphysis, I was more aware of the scars covering that area on my body, and the erosion of the bone I'm dealing with. We talked about the obturator internus, which I know too well how that feels to be internally palpated and worked on by a therapist. Finally we spent a great deal in the powerpoint talking about the piriformis and how it is the reference point of the pelvic region. Slide after slide, I stared it down, almost challenging it. This is my great enemy, who I will do everything in my power to finally defeat. I'm determined to learn everything I can so that I am no longer at its mercy. And so that I can effectively treat my own patients one day.

Just a side-note: now that I'm in school, I have less time to answer the personal emails I receive. Please know that I read each and every one, as well as all the comments you leave. You are not alone. And if you ever find yourself in Philadelphia, drop me an email and we can get coffee.

Power
 
Living     in the earth-deposits     of our history

Today a backhoe divulged    out of a crumbling flank of earth
one bottle     amber   perfect   a hundred-year-old
cure for fever     or melancholy     a tonic
for living on this earth    in the winters of this climate

Today I was reading about Marie Curie:
she must have known she suffered     from radiation sickness
her body bombarded for years     by the element
she had purified
It seems she denied to the end
the source of the cataracts on her eyes
the cracked and suppurating skin     of her finger-ends
till she could no longer hold     a test-tube or a pencil

She died    a famous woman    denying
her wounds
denying
her wounds    came    from the same source as her power

                    -Adrienne Rich


I came across this poem today because I am reading Wild by Cheryl Strayed, a grief-stricken and lost woman who decides to hike the Pacific Crest Trail to find catharsis. She is completely unprepared and ends up carrying a ridiculously heavy pack. Later on in her journey she is given some help on what items she can get rid of to lighten her load. She relented on most things except her copy of The Dream of a Common Language by Adrienne Rich. She brought other books as well, but was able to burn chapters as she read them. But there was something in this book that she safeguarded and there was some reason she carried it thousands of miles. I wanted to know why. I felt connected to Cheryl a few pages in because she was a female backpacker, choosing a poetry book as her lone companion. It had to be pretty special.

After no luck in a used bookstore, I decided to cross the street and search in Barnes and Noble. Lo and behold, there was one copy left. Too curious to find a table, I plopped myself down on the carpet. Tall bookshelves rose above me as I turned to the first poem. It was the same poem Cheryl turned to her first night on the trail. It was perfect.

digging through notebooks

I found this entry in one of my notebooks, dated 2/25/12 and wanted to share it.

I have been gone a long time. Updating is getting difficult for me because I find I'm distancing myself from past horrors. And even though there are still health obstacles to overcome, I find it easier not to write about it. I want to enjoy life and relish in this happiness. For months now, I wake up in the morning feeling happy. Truly happy. For a period of time, the joyous emotions were so overwhelming that I would cry. Not just a few tears either. I opened my eyes each morning, and felt such a dramatic reduction in pain that I bawled. It was a right I thought I'd never get back.

The crying did not stop there. Life became dramatic- the sunlight caressing a tree a certain way would move me to tears. One day I was walking down the streets of Philadelphia with my sister and started crying without any sort of trigger. Luckily my sister was used to these reactions and told me to pull it together because we were about to walk into a pizza parlor to meet all her teammates. And it's best not to meet twenty girls on your sister's crew team when you're bawling your eyes out. Because then they'll want to know what's wrong and you'll have to tell them that nothing is wrong. In fact, things are wonderful. And they won't believe you and then you'll become that weird older dramatic sister that they try to avoid.

Luckily I pulled it together and no one was the wiser.

The frequency of these episodes has greatly been reduced over the past months. But they'll still happen if the trigger is good enough.

Many people have been writing to me asking me if my pain is gone. I'm still undergoing intense prolotherapy treatments, but I feel they are helping. I am being patient and putting faith in my doctor and my body to heal itself. But I don't want to talk about that today.

I remember years ago being so frustrated by all the depressing stories of women I found online. I realize now that writing is very therapeutic when you are struggling. People tend to stop when they are doing well. I think we just want to forget this ever happened to us and are anxious to go back to the way things used to be. This is of course impossible because we have been forever changed.

I wanted to write this post to give strength to anyone fighting a difficult battle right now. I remember how hard it used to be. I remember hitting my arms, bruising them repeatedly to try and distract myself from the pain. I remember driving in the car and thinking how easy it would be to turn the wheel slightly and escape from the pain.

I remember specific nights, crying on the floor, wondering how I was going to get through another day. If I only knew the happiness, the elation that I would feel just a year later. I couldn't whisper in my ear back then, so I'm whispering in your ear now.

Whoever you are, wherever you are, whatever your battle, however long it's been happening, keep going. Keep going. You can't give up when you don't know what tomorrow will bring.

To strive, to seek, to find, and not to yield.

I dreamed about writing a post like this for many years. Years, can you believe it? Whenever I have a moment to myself, old scenes flash before my eyes. They no longer haunt me, but I am still amazed they were lived through.

I'm trying to explain how I feel right now, but words are failing me. Imagine being weighed down by a huge pack while climbing a mountain. (Did you expect anything else?) The pack is so heavy, you cannot even lift your head up. Bending forward, teeth clenched, you spend all your energy taking one step at a time, being careful not to trip over anything in your path. Sometimes you stop and think about how far you have to go and life seems hopeless. You wonder if it's even worth it anymore to continue to take it, to continue stepping forward. If you could just take your pack off, if you could just lighten the load, if you could just feel a release for a little while...

Think about that burn in your legs, the ache in your back, the shortness of breath, and then imagine what it would be like to have your pack removed. Immediately, your back straightens and you realize how far from normal it was. With the weight now gone, you slowly regain your breath. Walking tall, you now lift your head and your eyes are just flooded with vistas of light. It is like you are seeing for the first time. You see everything around you and it all looks different. It does look like you are seeing it for the first time.

You cannot help but reach out in front of you, just to make sure this is all really happening. As you continue to walk upward, you pause several times, checking to see if you are still carrying the weight, but you realize you just feel the ache of carrying it for so long. It's at that moment you understand how much weight you had been carrying this whole time, and what a toll it took on you. Life is now a second chance. It's a gift.

My prolotherapy treatments are working. They really are. The release I feel is unbelievable. We still have a lot of work left, but every time I go my pain decreases less and less. I'm beginning to go every two weeks now in order to treat the front of my hips as well.

I've been an emotional wreck recently because I am just so happy. I cannot contain it, I cannot hide it. It spills out of me in long waves. After my treatment last week, I cried for almost an hour in the recovery room with my dad and sister. I just could not stop and kept apologizing to them and the nurses who came in. It was like every bad thing that has happened to me needed to be released from my body. There's a lot that needs to leave. If you see me, don't be surprised if I start to tear up. In fact it's already happened in this coffee shop. Never did I understand what tears of happiness were until now. Every moment feels a bit dramatic. I just did not think I would ever feel this way again. It's as if life has said to me, "Welcome back."

Butterflies

Recently we are having brilliant weather. The leaves are turning, and the sun is shining through them to create autumn kaleidoscopes. There are rolling clouds accompanied by a faint wind that is just breezy enough to fly a kite successfully (which is really all that matters). Comfy clothing is back, along with the savory scents of bread, pumpkin, and campfires.

This weather just demands long winding drives, with open vistas of oranges, yellows, and reds amidst the green landscape. One day last week I was out cruising to wonderful music, making waves with my hand out the window, and all of a sudden a monarch butterfly flew directly in front of my car. For almost a minute we flew together, and I watched it gracefully dance as if by magic.

The next day I went for a lumbar MRI, and on my way to the facility a monarch appeared again in front of my car. Even though I was miles from the previous location, I like to think it was the same butterfly. I will never forget the way their wings glowed, flooded by sunlight.

I found out a few days later that my MRI came back clean. No obstruction in my lower back, vertebrae are in place, etc. I think this is the first clean MRI I have gotten back in four years. I was shocked. And then shocked that I was shocked. I have become so accustomed to the odds not being in my favor that I have adopted the wrong mindset.

The even better news is I have been feeling less pain on most days. I do believe I feel my body healing itself. This is when I'm supposed to be noticing some relief from the prolotherapy, so I really think it is helping. Which makes it all worth it. I am still anxious about what's to come, but I'm holding steadfast to hope. My next treatment isn't until November 17th, so there's more time to notice improvement. When I stop to really think about it, I get choked up. There's been a few tears this week, only because I don't even know what I will do if this is the final stretch. That's a lie. I will go out dancing. I will run a marathon. I will climb everything. I will be carefree. I will be happy.

I've been spending a lot of time reminiscing how far I've come. The constant in my life has always been my family and friends, who have stood by me no matter what. I have always been slow to trust and let people in, but these wonderful beings took the time to break down all my walls. I have been so much happier lately and have not needed to rely on them like I used to. It is so comforting to know I have people in my life who accept and love all parts of me. And who will be there for whatever lies ahead. I owe them everything. I stumbled upon this song a few days ago, and it's been playing nonstop. It's called Rely by Alex Cornish and it's here as a tribute to everyone who got me through this far.



Right now I'm taking each day as it comes. I am anxiously awaiting decisions from physical therapy programs. I'm icing, stretching, and doing yoga on a regular basis. I'm working, taking classes, and enjoying every minute of fall. And of course, I'm always on the lookout for more butterflies.