Hope & Healing Through Photography and Poetic Expression

Her Pain Dance

~~~
She extends
~~~

 Spine arched sharply over

Shaded green fields,

Facing her

 Daily mission.

~~~
She prepares
~~~

Like a

Lyrical dancer

Shifting her limbs

Purposefully

in

 Synchronized

Pandemonium;

Beginning another

Onerous quest

To reclaim her

Center.

~~~
She yearns
~~~

to

Unravel

Adhesed

Muscle fibers,

 Tame

 Rebellious joints,

and

 Align

her

 Misplaced bones.

~~~
She stretches
~~~

Fiercely

with

 Resilience

of

a

Brave Tigress

Setting forth

Deliberate intent

to

Free nerves

Trapped

Helplessly on their

 Path.

~~~
She exhales
~~~

Forcefully;

Hips Throbbing

Rotating her pelvis

around

The vertical axis of

her

Spine,

Drawing

Painstaking circles

in

 The air;

Seeking the graceful place

Where relief

Resides.

~~~
She resists 
~~~

Cruel

Demonic Forces

Contracting

Her tenacious fascia,

and

Summons

Strong willful fingers

to

Knead deeply into her own

Aching  tissue.

~~~
She sobs
~~~

softly;

Wrapping

 Her long thin arms

Tightly around

Self,

and

in

the

Shadow

of

 Agony’s harsh

Embrace

~~~
bows
~~~

solemnly

 to

stillness.

~~~
Robyn Lee

96 responses

  1. i can’t imagine the pain you live with.

    July 12, 2012 at 12:16 AM

    • Thanks Buck, not easy to imagine as I wouldn’t have been able either in 1993 before this spell was cast. The journey continues…

      July 12, 2012 at 12:43 AM

      • i wish it could continue pain free for you!

        July 12, 2012 at 9:56 AM

    • So do appreciate that Buck. Would be a dream… I will continue to work toward healing, and surviving the challenge, and wish for you only wellness on all levels.

      July 12, 2012 at 11:01 AM

  2. I almost had to stop reading because of the way your word-weaving, and the photograph, affected me as I sit here pain-free and wanting, sincerely, to take some of yours, because it is so unfair. Sending you so much love Robyn. The fact that you can write such incredible poetry and take such amazing photographs – so gifted – I am in awe. Juliexx

    July 12, 2012 at 12:22 AM

    • Thanks dearest Julie, but would never want you (or anyone) to ever know this pain monster. It is what it is though…and nearly 20 years has taught me to just manage the moments, and find joy wherever and whenever I can. This poem is very personal to my particular syndrome. It’s quite accurate and portrays exactly what most of my days are consumed with. I know it’s not an uplifter, but wanted to experiment with artistic poetry that speaks to the experiential ‘heart’ of my pain. Those close to me here who have watched me will know this “dance” is quite real. Thank you for your love and support always. Means more than you know ~ xo

      July 12, 2012 at 12:52 AM

      • I so want to kill your monster.

        July 12, 2012 at 1:02 AM

      • and I just read about your WordPress monster and wish I could extinguish him too 🙂 Thank you Julie… I’m not giving up.

        July 12, 2012 at 1:04 AM

  3. On this planet we are all brothers and sisters, though most know it not. From one sister to another I cry for your pain and I applaud for your strength, my dear friend.

    July 12, 2012 at 12:24 AM

    • Penny thank you for your kind and wise words. I do believe that we are all brothers and sisters — have felt that way about people and life since being a child. Gratitude and Love to you…so appreciate your encouragement and caring…

      July 12, 2012 at 12:58 AM

  4. Oh, Honey…..your words and photo combined truly create your vivid life for your readers. I am so very sorry for your pain. Even though you’ve told me about your pain challenges, your words make everything more real. Your ability to express what happens to you everday is amazing. Truly gifted in the light, you are, and bringing blessings to us through your journey. Stay strong and bright….I’ll keep cheering the dancer in you onward. Very, very moving post. Thank you. Sam 🙂

    July 12, 2012 at 1:11 AM

    • Sam thanks so much for your loving and compassionate comment. This one was tough, but as you know, I felt strongly about confronting my pain shadow more directly this time. I often say to my family and closest friends that if anyone could see what the waking (and sleeping) hours of my days consists of …. well ~ So this is a little peek into my reality. I tried to put a lyrical spin on it all, to make it more palatable for myself and the reader… but nevertheless, welcome to my world (less the surgeries and other medical interventions).

      Thank you for appreciating my attempt at creative expression around such a painful and personal subject. I do think chronic pain is misunderstood, and perhaps works like this will help inform and educate too.

      I will continue to work toward the ‘healing dance’ and know that the connections and friendships I’ve developed here have lifted me higher than I could have ever expected in this direction. Love and Light to you Sam so grateful for you empathy and support ~ RL

      July 12, 2012 at 1:25 AM

      • This was beyond an “attempt.” I believe you paint a clear picture of your experience. And, yes, certainly you will be able to help others. People who live in chronic pain live in such an isolated world at times…you give a voice to all of us. Clapping for you. Hugs 🙂

        July 12, 2012 at 1:28 AM

    • Thank you so much for the applauds Sam… wish this pain dance was a real performance and could end with the ‘bow’ and the ‘clapping’ 😉 – but it continues – so I’m off to tame the rebellious joints before sleep attempt… so very happy you feel my piece can lend a voice … much needed I believe, and not an easy subject to understand. Healing hugs to you ~ sleep well!

      July 12, 2012 at 1:36 AM

  5. Beautimous

    July 12, 2012 at 1:37 AM

    • Thank you so much legionwriter… had to translate in urban dictionary (not very current on my internet slang) 😉
      Beautimous = Beautiful & Fabulous at the same time.

      Flattered and grateful my friend ~RL

      July 12, 2012 at 1:40 AM

      • It takes a very secure man to use such an adjective. 😉

        July 12, 2012 at 2:33 AM

    • I would have to agree ~ and honor your sense of security in this regard. Made me smile which is a lovely gift tonight ~ thank you kindly 🙂

      July 12, 2012 at 2:38 AM

  6. victoriaaphotography

    Such excruciating pain you describe.

    I have to re-read my old pain diary from years ago to remember what it was like. I DO so wish you could find the improvement I have experienced. I used to think I’d never get through those days and nights, but I did, and whilst I still experience intermittent episodes, life is so much better now.

    Wish I could wave my magic want over your back & hips to make the pain magically disappear, but all I can do is send healing thoughts across the miles.

    V
    xox

    July 12, 2012 at 1:47 AM

    • Thank you Victoria. You are an inspiration indeed. I have those diaries too… but mine span so many years, and only progressive symptoms and failed surgeries, so I rarely look back. I will accept the magic wand if we can find one though…thank you dear friend. Much appreciate your loving thoughts today…xo

      July 12, 2012 at 10:48 AM

  7. Your open, honest, raw, descriptive, heart wrenching, glimpse into your world was so incredibly moving, I just honestly don’t have the words to express anything but complete admiration and insipiration for your struggles with chronic pain and yet have such an outstanding positive outlook on life! You are a jewel to us all!!

    I know what chronic pain is…inside and out and I know one can never ever ever ever compare…just empathize and encourage and keep moving forward!! Hugs sweet friend!! ~

    July 12, 2012 at 1:48 AM

    • Christina thank you so much for your heartfelt words. I can tell you have deep insight, even though I have only met you recently. Means a lot that you can appreciate my desire to survive and thrive despite the adversity. I can only do my best. This sharing part is very new for me … especially my attempt to express the pain in an artistic way. I only hope it is healing, if not physically than at least at an emotional level to some degree.

      Yes – one can never really know or compare as this is all too personal, but as you say – encouragement and empathy and unconditional love are the most treasured of gifts. Very grateful for your friendship ~ Love and Wellness to you always!!

      July 12, 2012 at 10:53 AM

      • You are so sweet…and your friendship and encouragement to me as I begin this ‘sharing journey’ have meant more to me than any words can express!!

        I am very hopeful that this is a healing process for you…making you stronger and continuing to inspire others (like me!) along the way!

        You are cherished sweet friend!! Hugs & Blessings!

        July 12, 2012 at 8:48 PM

  8. You are so kind to everyone, but fate is unkind to you..You are mentally strong and I wish you well and pray for you.

    July 12, 2012 at 2:12 AM

    • So very touched nightlake…and truly appreciate your wishes and prayers. Love and wellness to you always friend 🙂

      July 12, 2012 at 10:54 AM

  9. onlinefunland

    Great !

    July 12, 2012 at 2:46 AM

    • Oh wow, thank you so much Onlne Love 🙂 It means a lot that you felt this way, as poetic expression of pain is a tricky one, and just knowing that you enjoyed the verse and image combo warms my heart. Much Love ~

      July 12, 2012 at 10:57 AM

  10. ~Lady Day

    This quite frankly, made me weep. xo My words can not express properly the emotion to reading this. Just tear soaked silence…xo May you find the strength sweetheart.

    July 12, 2012 at 3:54 AM

    • Thank you so much Lady Day. You are so kind and sensitive and I appreciate – but please no weeping allowed on my behalf. I feel your good wishes and encouragement, and that is more than enough my friend. ~ much love to you and yours….

      July 12, 2012 at 11:06 AM

      • ~Lady Day

        I wept because…it is how life can be for anyone…no matter who you are. The words here are so lovely to discribe something so painful. You take your pain and turn it into a vehicle of magic. I have no doubt that this path you walk is brutal, yet here, you show us a bravery, that makes me weep to see. A true amazement you are. xo

        July 12, 2012 at 11:14 AM

    • “You take your pain and turn it into a vehicle of magic.”

      These words just touched me so much. When I started blogging with an emphasis on healing, I knew it was risky as I am far from “healed” and know that most do not want to read about the ugliness that physical pain without a promised ‘happy ending’ truly is. It’s scary and as you say, threatening, as anyone’s life can change ‘on a dime’ and this is something we all fear in our own ways.

      So when I began to introduce my physical realities here, I fought with myself about how much to reveal, and how to reveal. I realized that as horrific as this is, pain is still FEELING which in a morbid kind of way — still equates to LIFE, and the miracle/beauty of such. Thus, the concept of using art, photography and now poetry to express myself evolved. I have searched sources and found limited material that does this. The few poems I discovered really had impact for me – and thus I wanted to try my hand at it myself and see how it felt to me, and how others receive it.

      Thank you so much for ‘getting this’ Leisel. Just realizing that you do, is hugely helpful to me emotionally. Those tears are appreciated more than you know. So much Love to you today ~ RL

      July 12, 2012 at 11:27 AM

      • ~Lady Day

        xxxxxoooooo

        July 12, 2012 at 11:35 AM

  11. I admire your strength. You are such a special person Robyn!

    July 12, 2012 at 4:26 AM

    • Very much appreciate that poojycat ~ truly means a lot to me, much love…

      July 12, 2012 at 11:08 AM

  12. this one made me cry Robyn, it is moments like this where i wish to be a shaman blessed with magical powers that could overcome any and all pain with the simple yet immense powers of joy and love and peace and share them with you in a healing way …. i was taught as a young boy to always say my prayers before bedtime and i still do to this day …. there is always a prayer said for you during these times and i hope this will help find you the courage and strength to carry on as best you can …. best wishes being sent your way as always dear friend, Jim

    July 12, 2012 at 4:57 AM

    • No crying allowed on my account dearest Jim. I will certainly embrace the ‘shaman’ in you — and have dreamt of finding that being with magical powers to heal, as you describe. You are infinitely kind and generous with your spirit, and want you to know that I appreciate that wholeheartedly. Thank you for your healing wishes and prayers always. I continue to forge forward on this journey and it’s to a large part because of souls like you who encourage and support me. Much love and gratitude. Blessings to you always ~Robyn

      July 12, 2012 at 11:42 AM

  13. I had to come back to this to see what other people had said, Robyn. I am hoping so much that you will be asleep by now and not suffering – you have drawn attention to chronic pain in such an artful, uncomplaining way and your words have obviously touched many people – oh, no words suffice!

    July 12, 2012 at 5:41 AM

    • Julie – that means so much to me…. would be so natural to moan and complain – or as my family would say “bitch and moan” 🙂 It just makes me feel worse to traverse that kind of path (and trust me I’ve tried it)!! I do hope in some way this kind of work is helpful or healing to others in whatever they are suffering. As I just said in a long post to Lady Day, anyone’s life can “change on a dime” (and I know you understand this all too well 😦 ) It’s unpleasant to consider and thus, I wanted to express myself in the most artful way I could and in deep contemplation realized that PAIN=FEELING=LIFE, and thus deserves to be embraced along with all the rest. Much Love to you Julie — words are never necessary as I can feel your intention and spirited goodness always … xo

      July 12, 2012 at 11:50 AM

      • You really are incredible – I admire your bravery in this kind of writing and your honesty. Love to you Robyn – Juliexx

        July 12, 2012 at 11:54 AM

  14. I was drawn into the shadow of your pain with each word you expressed, and nearly shook with the sorrow you describe….heartbreaking though this was, it also shows your bravery and courage, your determination to move along….. I so admire your strength, and what it took to open up on this level and share that secret pain….I hope you gained at least another level of control, no matter how small, as you unveiled the ugly face of the disease that plagues you…..I salute you, Robyn, woman of grace, strength and beauty, and bow to your continuing,soulful efforts and warrior will…..may you find peace, healing, and rest in abundance…..
    love to you and blessed hugs
    Celeste

    July 12, 2012 at 6:05 AM

    • Thanks you from my heart Celeste. Your words here are a beautiful gift. I do often envision the warrior princess for myself in this journey. Sometimes I feel defeated though – and it takes a bit to build myself back up to reclaim that archetype. Yes – this was difficult writing for me… highly emotional and personal. I wanted to do it though, and am glad I did… My physical pain is not improved today …. but I’m hoping with time some of this expression might help strip down some layers. Thank you for being the vibrant generous spirit that you are Celeste… Much Love and Wellness to you always ~ Robyn

      July 12, 2012 at 4:10 PM

  15. Tom

    Thank you! This connectedness shared through your words is important for each of us, all of us. A chance to be briefly with you, and each time stay with you a little more.

    July 12, 2012 at 6:09 AM

    • Tom, very touched by your statement. Thank you so much. Can feel the presence of those here who do care and it means a great deal. Blessings always ~ RL

      July 12, 2012 at 4:06 PM

  16. Lovely moment captured – wonderful effect of light and shadow – lovely silhouette – well skrevet words… 😉

    July 12, 2012 at 6:32 AM

    • Opps – a danish word in my text… ‘big smile’
      “well written words”

      July 12, 2012 at 6:34 AM

      • Thank you dear ledrakenoir for your wonderful and thoughtful comment…I will take it any language – through it was fun to have a little Danish in my life today 🙂 ~

        July 12, 2012 at 4:12 PM

  17. Kathy

    Powerful. I am teary. There is a solution-it is coming. Have faith.

    July 12, 2012 at 7:33 AM

    • I hope so Kathy… thank you for your loving encouragement. I appreciate xo

      July 12, 2012 at 6:34 PM

  18. Renee Braunstein

    Robyn this photo is so beautiful. I love the color of the water. I can almost feel your pain the way you describe it.

    July 12, 2012 at 9:07 AM

    • Thank you Renee, I also liked the indigo water color. No – never want you to feel this pain ~ but appreciate your support always xo

      July 12, 2012 at 6:36 PM

  19. So brave and powerful, Robyn…it’s truly amazing how you are confronting such a demon…sometimes prayer is all we have and I certainly feel that faith in this one…I’m having a bad bout of anxiety today…quite debilitating…you’ve given me courage to get on with this day…and yes, maybe I will be able to write about it too..we’ll see…love you…xoxm

    July 12, 2012 at 9:13 AM

    • Thank you so much Meryl…. this one was really hard – but just had to be done as I know my reality is not what most envision, and I had a strong need to express myself in a passionate way here. Pain levels are at a new high now – and I know I can’t keep doing this “dance” as my walking has gotten to new levels of limitation and pain that I just can’t accept.

      I am sorry today was a struggle with the anxiety, and can relate to that as well as the pain sends my nervous system into the equivalent of a constant panic attack much of the time. I so hope you were able to ride the wave and get on with your day… mine did not flow this well unfortunately.

      As for your writing about your challenges, you will know when the time is right. It has been a slow evolution for me… and I did find escaping into ‘3rd person’ and poetic verse as opposed to “narrative”gave me more strength to “go there” — it’s a vulnerable place to be, but I know there are so many who suffer this in silently – as I did for almost 20 years….and revealing now in my own way, and at a slow pace, does feel like the right thing. The community here has been more supportive and loving than I ever expected. This blog was initially going to be photos only – and I’m in awe of the encouragement and nurturance I’ve received, now 6 months into it.

      Hoping I can continue – but may need to slow down till I get stabilized.

      Love and hugs – R

      July 12, 2012 at 8:18 PM

      • Wish things were different for you Robyn…I can’t imagine how you cope on a daily basis…communicating your pain, however, must be such an emotional relief and if that’s all you can get, I pray that you can continue, even writing on a daily basis makes such a difference for me when I can get myself to put everything else aside…and the photos can come as they will….lots of letting go seems to be required on all fronts…love you…m

        July 13, 2012 at 2:21 PM

  20. Hi robyn:))). Wonderful writing and breathtaking photo:)). Just wanted to let you know. I won’t be posting for a while. :). So don’t worry. You can write me at my email if you like to know more:)) big healing thoughts to you

    July 12, 2012 at 9:57 AM

    • Hi David..thank you so much – as you know your opinion is always so important to me, and this was the piece I’d mentioned to you a while back… finally mustered up the courage to finish, and post it… as this week has been particularly brutal for me. As for you ~ yes I would have worried, so I’m glad you shared that here. Will be in touch!! xo

      July 12, 2012 at 8:22 PM

  21. embullum

    Robyn,
    Your words brought tears to my eyes. You are a wonderful writer and an amazing person x

    July 12, 2012 at 6:35 PM

    • Elizabeth – that was such a lovely thing to say, and I appreciate — but no tears my friend. I know you understand this “dance” ~ perhaps yours is of a different rhythm but still very much a connection for us. Hope you are managing well, and maybe we can catch up soon too 🙂 Much Love ~

      July 12, 2012 at 8:24 PM

  22. Robyn, your words are transformed into an incredible message to all who visit your blog, your strength and courage every day is like a light that shines and lights the way. That’s good for all who appreciate you, my friend.
    Lo bueno vuelve siempre¡

    July 12, 2012 at 8:03 PM

    • Thank you dear Carlos. This was a more personal post, speaking of my own daily battle with pain. I am hoping that it helps others get to know me better, and understand what I live. I tried to express myself in an artistic way, and hope that it worked ok. Your support and encouragement has always been there, and I appreciate so much ~ Much Love to you my friend xo

      July 12, 2012 at 9:53 PM

  23. I’m reading. Speechless. In awe and sorrow. Sending you my prayers and love. oxo Mindy

    July 12, 2012 at 8:35 PM

    • Thank you so much Mindy. Been extra tough here so I wanted to try my hand at creative expression of my pain. Not the easiest assignment – but I’m happy with it. Now I need to reduce the pain so I can participate in life more fully. Thanks for sending me the link – I have not looked yet – but will ~ Much Love to youxo

      July 12, 2012 at 11:14 PM

  24. You live so sharply. Stillness is cleverly helpless I am sure. But you – you make my pupils puddle prayers of hope. Hope with hips who steel you back beyond the chrome beyond the prescribed words. In my unceasing wants of unity there you will be. Sleep well be well always.

    -M

    July 13, 2012 at 12:06 AM

    • Thank you Mari… I am humbled by your comment, and your puddle prayers of hope for me. I know they have power, and will turn to the vision of these crystalized puddles when I am in need. You are the angel of word magic my friend — a gift that will bless many who take the time to explore with you.
      Sleep is waiting ~ and I wish you also peaceful slumber filled with loving dreams (which I know will be easy for you these days:) ~ RL

      July 13, 2012 at 2:26 AM

      • temporarily placing my head down with a smile on my face.
        Love, lots of love and healing for you. You especially you!

        July 13, 2012 at 10:16 PM

    • Thank you love – i so appreciate 🙂

      July 14, 2012 at 5:32 PM

  25. Oh, Robyn, you capture it all so well. Wondrous – I am in awe.

    July 13, 2012 at 3:36 AM

    • Polly thank you so very much! I wasn’t sure others would “get it” ~ but for me it was very powerful to write, very personal. I am so glad you appreciated~ Much Love

      July 13, 2012 at 11:40 AM

      • It’s in our family too, Robyn, one could not fail to understand ~ Polly x

        July 29, 2012 at 10:52 AM

      • Means a lot….and for whoever in your family suffers, I hold a sacred place in my heart xo

        July 29, 2012 at 11:21 AM

  26. You have managed to discover a beautiful expression of the agony that you endure, transcend.Blessings to you, dear Robyn on your healing journey..just got back from vacation last night. Jane

    July 13, 2012 at 2:18 PM

    • Jane thanks so much for that. I did put a lot of emotional energy into this piece and tried hard to convert the scary horrible pain into something energized with beauty and passion. Not an easy task…. and just hope it is healing on some level for me an others who suffer. Welcome back – we missed you and your wonderful pictures ~RL

      July 13, 2012 at 4:47 PM

      • What a skill you’ve worked here to leave us sway with the flow&taste pain as if it were perfect music! May you be healed;blesses Peace & Light

        July 14, 2012 at 2:43 PM

    • Thanks so much Mira…such a wonderful comment from you ~ and was somewhat my aim in writing this. I refuse to give this pain the power to break my spirit – thus tried to disempower it some by turning it into art. Much Love and thanks for your insight dear one!! ~

      July 14, 2012 at 5:30 PM

  27. Julie Catherine

    Oh Robyn, I felt your words, your raw pain, through the beauty of your words, and it brought tears to my eyes. As a chronic pain sufferer with multiple health issues, I also empathize – and I am so sorry for all you have to deal with every day. I so admire your courage and strength, and your positive attitude; something that is so important for us when it takes everything we have just to get through the day. Sending you gentle hugs, lots of love, and healing energies and prayers, my friend. ~ Love, Julie xoxox

    July 14, 2012 at 2:35 AM

    • Thanks so much Julie… really means a lot especially given that you can relate the way you can. I am not sure how courageous I am really, but I do love life and although this is not the life I’d have chosen, I try hard to find the joy wherever I can. I am certain you do the same, just judging from the little I’ve gotten to know you here. You are right… getting through the day (or the moments) is unexplainably brutal most of the time, each small task or interaction becomes a huge undertaking. Even the simplest things like eating or sleeping are a production… I send prayers up for you today to find ease and comfort and loving happiness in your world… continue creating and gifting others with your beautiful talent and spirt Julie… Very happy we connected the way we did. Much Love always ~

      July 14, 2012 at 6:44 PM

  28. How brave you are! Hugs and kisses!

    July 14, 2012 at 4:20 PM

    • Thank you dear Resa…sooo appreciate your caring thoughts – Love back to you!

      July 14, 2012 at 5:27 PM

  29. Amazing Robyn!!!

    July 14, 2012 at 8:30 PM

    • Aww- thanks soooo much for that – so glad you liked it onelife 🙂

      July 14, 2012 at 10:47 PM

  30. Robyn, you write with such eloquence something so deeply felt and experienced by you…and I am honored that you have shared yourself with us in such an intimate way. As you experience the sensation of touch and motion that seems to bring some sense of release, may you also be blessed with a healing energy that flows through you, and a gracious love of the Divine who breathes in peace to you…as it is my prayer for you. Blessings to you: beautifully, amazing woman 🙂

    July 16, 2012 at 10:26 AM

    • Thank you so much dear Erin. It was a hard task writing this, as my pain is personal and torments much of my waking and sleeping hours. Yet, I wanted to explore expression around it this way to see if I could indeed achieve some release. I think on some level I was successful, though I realize my dilemma is complicated. I do appreciate your blessings of healing energy and gracious Divine love ~ these can only be supportive for me on my journey. Much gratitude and Love to you beautiful sweet friend, Robyn

      July 16, 2012 at 2:31 PM

  31. Chris

    This post really touched me Robyn and is without a shadow of doubt my favourite piece of work you have done. You have expressed your feelings about your health here from deep inside your soul and produced a somewhat brilliant poem, by the end of the poem I had a lump in my throat, really. Thank you so much for this, you truly are an inspiration.x

    July 17, 2012 at 5:24 AM

    • Oh Chris… first – I’m so happy to see you back here. Have had you on my mind/heart hoping you were ok. Very touched that you felt moved by this particular post. I know you truly can understand what energies drove me to write something so vividly painful…. I have such a hard time writing about my pain ~ and fear the emotions that are generated while I attempt to do so, but this was an alternative approach where I tried to transform the physical experience into something lyrical and artistic. I’m glad I did it this way, as it seemed better received than other ‘versions’ I could have presented here, and I’m hoping it allows readers to get a slight glimpse into what it might be like to live in a ‘pain body’ 24/7, without being completely distasteful or scary. Means the world to me to hear from you on this Chris… Loving thoughts your way ~ RL

      July 17, 2012 at 12:28 PM

      • Chris

        And I’m happy to be back especially as I got to read this post but I have realised that shutting myself away doesn’t do my well-being any good so I am back to blogging as writing really is a good outlet for me. Well Robyn, I have to say you have definitely succeeded in transforming the physical experience of pain into something lyrical and artistic, it truly is brilliant, it is so powerful and if it hasn’t given readers an idea of what it’s like to live inside a ‘pain body’ then I don’t know what will.

        Again, thank you for this post Robyn, thank you for this insight into how your chronic pain affects you and thank you for your wonderful blog because it shows what a special women you really are.x

        July 18, 2012 at 5:58 AM

    • I know Chris…it’s such a hard thing to know what to do to try to improve — there is the physical pain and the emotional overlay… both awful. The blogging has been somewhat of an experiment for me… hoped it would help me more as far as the physical. May actually be the opposite as sitting at the computer and trying to be active with the photography is taxing for me. Not sure if sitting is a huge issue for you – but very nasty here. On the emotional though, it has been really good, as I feel a sense of productivity and connection with others ~ and the creative expression too… So a hard call. Really glad you thought the post succeeded at doing what I’d hoped….I’m proud of it too~ and did provide a sense of release if only emotionally – but I”ll take it. Going to have to go through the gamut of tests again soon to see what the joint has done (been a year since last MRI)… want to believe this is still rehabbable – but not sure… Much Love Chris — I’ll catch you over at ‘your place’ soon 🙂 ~RL

      July 18, 2012 at 9:16 PM

  32. I have to say i truly admire your strength and the genuine sense of touch you bring to life.I’m deeply moved by your post. Cheer on!

    July 23, 2012 at 3:18 PM

    • That means a lot coming from you, as i spent a good deal of time exploring your blog earlier. So much depth and wisdom… I will Cheer On ~ as best I can my friend…thank you 🙂

      July 23, 2012 at 3:22 PM

      • Thanks again.You can count on my friendship.

        July 23, 2012 at 3:31 PM

  33. Oh Robyn. This made my eyes well with tears. I thought I had commented earlier… (Maybe I forgot to hit “post” through my tears!) 😉 I cannot imagine this force within yourself that you deal with daily. At times you must feel so betrayed by your own bones, your own muscles and even the thoughts about pain that must consume you so completely at times. I cannot tell you how powerful your words are in their awful truths. “Adhesed muscle fibers and rebellious joints.” And the visual of “agony’s harsh embrace” is just almost too much to bear. You dance through your words and images, Robyn. Though all else may seem to be failing you, know that your words and spirit have power over this force that tries to make you to succumb each day. I wish I could untwist and ungnarl this pain from around you, my friend. Despite my absence of late, please know I think about you daily and wish you peace and less pain. On a sidenote, I couldn’t help but be reminded of the body’s spine with the shape of your words. I love your creative, beautiful, unrelenting spirit. Sending happy thoughts your way . . .

    July 24, 2012 at 4:34 PM

    • Gosh KT – what you have taken the time to express here just completely blows me away. Am having a rough time of it lately – and to read how well you have summed up what goes on with me just from reading my poem…. well … there are no words. Even you description of “untwisting” is so incredibly on target. I only touched on most of what is going on with me in this poem, but yet you were so tuned in to the realities…even the part about where the mind goes — you are right about that too. I am thinking you must be a true empath. It’s amazing that some who are very close to me cannot even relate to the realities as you did. I so appreciate your loving support here… will never forget it. Thank you so much. It is such a blessing to know you. I hope you are busy in good ways… and that is why you are blogging less. Much Love to you always, Robyn ps: so interesting that you even saw the outline of the spinal vertebrae in the poem formatting. Was unintentional, but i do see it now ~ you are a very sensitive and amazing woman xo

      July 24, 2012 at 7:12 PM

      • I am humbled. Thanks for your kind words, I’m so glad to have had this chance to get to know you, even through your struggles that must be so difficult to verbalize. Thanks for always sharing such honest, sometimes painful, but always hopeful words and images. Sending prayers your way, my dear friend. I hope the days soon get easier.

        July 25, 2012 at 11:27 PM

  34. I have Trigeminal Neuralgia. Along with Cluster Headaches, the two are known as the Suicide Diseases as that is what the pain is known to drive people to do. A slight touch of an eylash or eyebrow can sometimes send a survivor to their knees in agony. I don’t talk about it much, and am in remission now–something it sounds like you tragically almost never get to experience–but your poem depicts quite well aspects of the torture. Thank you for sharing it.

    Russ

    August 5, 2012 at 11:44 PM

    • Oh Russ, thank you for writing. I feel for you so much with the Cluster Headaches and TN. I am VERY familiar with both of these. After a myelogram gone wrong in 2001 I encountered ongoing cranial symptoms that were never completely understood. It was thought I had an ongoing slow leak of cerebral spinal fluid – but we are still uncertain. In any case, both cluster headaches and trigeminal neuralgia were labels I received and was medicated for. I got the horrific facial pain and even phantom teeth/sinus agony… some of the sensitivity you mention, but not the predominant symptom, but horrific icepick headaches (through the eye) daily. Yes – I know hard to talk about all of this, and I usually try to escape into fantasy rather than think about more than what is going on at the very present moment.

      Remission is a wonderful thing – stay there!! I am sending healing prayers your way today, and may this TN monster never come near you again. Very appreciative that you visited and grateful you could relate to my poem. As I said, I don’t often “go there” but upon writing this one, I had a strong need to express my current reality. Much Love and Blessings to you ~ Robyn

      August 6, 2012 at 11:39 AM

  35. Amy

    This perfects my heart and soul, the image, the words, the remembrance of living that life of pain. The joy of shedding it, the sorrow for those that have not yet been released. Thank you for sharing your struggle and journey so beautifully. Like you I began to blog, not knowing where it would lead. I join you in your journey, and thank you for allowing those that don’t know you to access a part of you not everyone can understand. Blessings. To you!

    November 15, 2012 at 12:11 AM

    • Amy thank you so very much for your heartfelt and wonderful words. It is so meaningful for me to hear from others like yourself who have embraced this journey with courage ~ and overcome. It is true, may cannot understand ~ and this is a blessing for them… but support of those who can is always special. Thank you dear one ~ wellness and love to you always , RL

      November 15, 2012 at 6:51 PM

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