2,920 Days Gone By: These Jeweled Scars

These Fickle Expectations & Their Ill-Fated Casualties

“The wound is the place where the Light enters you.” – Rumi

Gurten – Park im Grünen (Swiss Alps in background); Bern, Switzerland

The warning signs had been blinking red for months, but my youthful naivety pushed these fateful beacons aside, a dismissal which rapidly emerged as my life’s gravest regret in the months and years ahead. Two thousand nine hundred and twenty (2,920) days later, the fallout continues to cascade consequences, both fortuitous and cataclysmic in nature.
Eight years have passed since I underwent the inauspicious (minor) surgical procedure for which its complications would shepherd me towards the diagnosis of Complex Regional Pain Syndrome (CRPS), away from a lifetime of aspirations pursued, dreams conceived, and work persevered. My unanticipated journey has resulted in untold heartaches and ambitions thwarted, a convoluted exercise in futility.

In the protracted seventy thousand and eighty (70,080) hours elapsed – more than thirty five thousand (35,000) of which I altogether disengaged from humanity and embodied an inconspicuous former colleague, friend and storyteller alike – my loyal readers may benefit from a cursory synopsis of the calamity that jettisoned my pursuit of this **Journey To Optimism**.

Adversity’s Adversary: A Road to Optimism

Ocho Rios, Jamaica (May 2013) to celebrate my graduation with a Master of Public Service & Administration (public policy track with concentrations in Security Policy and Nonprofit Management) from the George H.W. Bush School of Government & Public Service

A highly ambitious young woman, I was employed full time as a Journal Manager for a peer-reviewed scientific/academic chemistry journal in addition to attending graduate school full time at the George H.W. Bush School of Government & Public Service. Having reached the midpoint of my capstone research project for Congressional Research Service, the first derailment of my intricately diagrammed career path struck with the diagnosis of Complex Regional Pain Syndrome (CRPS).

In my early teenage years I suffered a minor injury to my right foot when my sibling playfully pushed me. As my foot landed half on the grass and half on the concrete sidewalk, my ankle rolled creating such a tremendous spike of pain that I was unable to place any weight on it. Over the years, the pain never fully subsided; in my late 20’s my husband eventually coaxed me to seek counsel of a medical professional, who ultimately advocated for surgery to remove an extra bone which appeared on my x-rays – believing this to be the source of pain.

The December 2011 holiday hiatus appeared the most suitable respite from the grindstone to undertake such a minor surgical procedure. By the fourth week of recovery, the podiatrist concluded that the incision had healed amply to reintroduce showering. This instruction would spiral my health in unimaginable ways; this first shower cultivating the conditions necessary for the wound to serve as the perfect host to feed the development of two serious and severe bacterial infections: a resistant form of Staph and clostridium perfringens.

Soon deep purple emanated within the foot and outlandishly inconceivable burning pain ensued. Among the many complications of CRPS is the presentation of non-healing wounds, this time extending the healing process by eight months (plus several weeks of dead tissue debridement) to fully close. Eight weeks IV antibiotics coursed through my veins 24 hours a day / 7 days a week to wipe out the infections. To promote new tissue growth and encourage wound healing, a wound vac was attached to the open wound for several months (pictured below), and eight skin grafts were required. I lost track of the number of months of intense physical therapy required to teach me how to walk again. Throughout these months of battling my own body, I crawled through graduate school, often arriving to class in my wheelchair attached to one bag of IV antibiotics with a second lined up to be changed mid-lecture.

Contrast to illustrate the discoloration (April 2012)

As I close my eyes and reminisce, the taste of IV antibiotics and heparin courses through my palate; the exhaustion harbored within every muscle of my body cannot be obliterated from memory. Although I would triumphantly trudge to graduation with the assistance and modifications offered by compassionate professors, in a matter of less than three years the disabling effects of CRPS would compel me out of the workforce, ravaging the core of my identity.

The Brilliance of Polished Jewels

The Acropolis; Athens, Greece

“Adversity is the diamond dust Heaven polishes its jewels with.” – Thomas Carlyle

Two hundred and sixty weeks of therapy…a reminder that the journey towards healing is an interminable process requiring the deepest of commitments, willingness to afford yourself the grace you deserve, and acceptance of a whole of body and mind approach. As the ultimate perfectionist, I have been forced to learn that the toll of the mental, physical, and emotional realities forced upon you by this disease most often leads you down a much longer, bumpier road than I ever imagined – which translates to the need to be gentle to oneself when full body recovery seems to drag on an unending path. All we can do is push onward, following the advice of our trusted medical professionals, and never forgetting the need for help mentally and emotionally processing this disease.

With pain and adversity comes strength and wisdom. The lessons I have learned along the way have, no doubt, been birthed by great suffering. And yet they have also deepened my character and enriched the lives of myself and my loved ones. Somehow…through consequential work my path along this Journey to Optimism has never been barricaded by my pain.

I look forward to sharing with you those hard-fought lessons which have helped shape new outlooks on life, perspectives less pessimistic than where I first began. Together, we can share our life stories, learning from one another, and discovering methods to reduce the negative effects of the CRPS mind-body connections that can create what I refer to as “pain loops”.

Sincerely Yours,

Crystal N. Davis

The Terrible & The Fortunate

“I was born with an enormous need for affection, and a terrible need to give it.”
– Audrey Hepburn

Thinking of the ocean-side helps to bring me to a more zen place, important in stress management.

I cannot recall a time when the happiness of others did not supersede that of my own.  My happiness has been so intertwined with others that the only moments of pleasure I could grasp were those generated from the satisfaction of colleagues and family.  I survived by feeding off the delight of those around me.  Looking back, I saw it coming…

Navigating Cold Weather with CRPS/RSD: A Call for Advice

Learning the Lingo

“If we had no winter, the spring would not be so pleasant; if we did not sometimes taste adversity, prosperity would not be so welcome.” – Anne Bradstreet

Although this picture dates back to my modeling days, it screams springtime in Texas.

I will be the first to admit that I don’t have all the answers.  Heck, I don’t even have that many answers.  But investigation and communication have always been strengths of mine.  So today I turn my blog to my readers and ask:  what can someone suffering from CRPS or other types of chronic pain do to help overcome the long winter months?

The Blessings You Never Knew You Could Create: A Picture Book

“Vision:  It reaches beyond the thing that is, into the conception of what can be.  Imagination gives you the picture.  Vision gives you the impulse to make the picture.”

– Robert Collier

 

The Blessings of My Journey….

In today’s busy life it’s so easy to overlook all that is wonderful in life.

Somehow even the slightest negativity never fails to bring down my day. At the same time, I find myself never appreciating – really appreciating – even the most exciting news. I cannot recall a time this was not true, though, admittedly my brain has not had the opportunity to actively consume positivity the past year.

Learning to Hope, Not Wish

Me and the two girls that mean the most to me at the George H.W. Bush School; Photo courtesy of Rosalee’s Custom Photography

“The doors we open and close each day decide the lives we live.”

– Flora Whittemore

 

Everything has changed.  Everything.  Yet it’s the smallest of these changes that tend to bother me the most, such as my once naturally beautiful nails that now crumble like carefully baked cookies, symbolizing the destruction of the life I once lived.  Things that seem so inconsequential on the outside can tear you apart from the inside.  It’s hard in the moments that feel as if you’ve lost the things you once loved and must force yourself to overcome hurdles you never asked for, just for a fleeting glimpse back, to stand in the kitchen for 15 minutes as the burning begins to forcefully set in and feel powerless to make what you once loved dearly enjoyable once more.

I often times find myself wishing.  I wish my body had waited to manifest this disease until after I finished graduate school so that the hill did not seem so far to climb.  I listen to the complaints of others and wish those were my major concerns.  I wish my treatments – the physical therapy; the medications that blur my thoughts, steal my memory, and muddle my overall cognitive abilities; and the nerve blocks – were somehow more tolerable and…perhaps even sometimes easy.  I wish evenings were more enjoyable, rather than exhausting and painful.  I wish to avoid special treatment from others, yet find myself providing internal excuses for why I’m different than others – a hypocrite that I can no longer look in the eye.  I wish for so many things, big and small, rational and irrational.

Struggles with Wishing for Normalcy

A bracelet I received from my mother for Christmas

“It is normal to give away a little of one’s life in order not to lose it all.” 

– Albert Camus

 

I just picked myself up off the bed after curling into a ball, crying for an hour.  These days it seems as if the highs are higher than I could have ever dreamed of…yet the lows are nearly unbearable and the triggers for the lows are seemingly benign.  Guilt, anxiety, anger, hostility, depression, appreciation of life, love, laughter, pride:  these are all emotions I have endured over the past 48 hours.  More than anything, I worry.  Anxiety drenches me, leaving me breathless, draining my energy until none remains.  I have tried seeking ways to overcome this roller coaster, but my traditional  coping method almost always fails:  music.  You see, it has been difficult to find relatable lyrics directed towards my particular age group; I find myself feeling older with each passing minute.  Time is fleeting.  The closest are songs of longing for a loved one; that lost love being my old self.  I realize I will never be the person I once was, but I must remain resolved to metamorphose into something better, more meaningful.

In all my self-pity, there is so much thanks to give, and I realize this more often than not these days.  I see so much of the world that I had been blinded to, and although emotions are so much more intense than they once were, the emotions do not discriminate.  I love more, laugh more, appreciate more, document more, and desire to give more and live more.

Sometimes Finding Yourself is as Easy as Finding Your Friends

“Life is partly what you make of it, and partly what is made by the friends we choose.”

– Tennessee Williams

My surprise 30th birthday orchestrated by my wonderful husband

A Missing Person

You may be asking yourself where I have been.  I have found myself asking that very same question over the last few months but more so after being released from all of my specialists’ care, with the exception of neurology of course.  Processing the diagnosis has been a difficult road, and returning to work as a full time graduate student provided its own set of challenges.

Realizing Disappointments Are Not Setbacks

Everyday Disappointments

“We must accept finite disappointment, but never lose infinite hope.”

– Martin Luther King

Copyright: Greg Daniels; Dallas, TX

Disappointments have been intensely magnified over the past few months; they are lurking everywhere.  I have waited so long to hear good news that my expectations following good news can be too high.  I complained about my head being too muddled to process discussions and write eloquently and concisely.  Now that I have run out of pain medications until my first appointment with a pain management specialist in Houston on Oct. 19th, I cannot even begin assignments because I simply cannot overcome the pain.  And suddenly I am reminded of a reading for class that made me sob.

I cry a lot these days.  I shed tears in front of an entire class when one of our readings discussed the motivations of safety (pain).  I cried today listening to a rap song.  I have always worn my heart on my sleeve, but I can’t help but wonder how I got to this strange, depressing, and sometimes exhilarating-beyond-belief world.

Taking the Long Way Home

Suffering Silently

“The truth that many people never understand, until it is too late, is that the more you try to avoid suffering the more you suffer because smaller and more insignificant things begin to torture you in proportion to your fear of being hurt.”

– Thomas Merton

Taken in Lisbon across the street from Eleven Restaurant

I have been missing for quite some time now. There are days, more than not, that I simply am incapable of finding myself. A few of these days I was absolutely certain I was lost forever. I sometimes feel like a stranger in my own body. No. It’s really my body that is strange these days. I remember a time – not so long ago – when describing pain was a simple affair. In the past couple of weeks I have actually responded to the question, “How would you describe the pain?” with uncontrollable tears. Pain has become complicated. There’s the “normal” burning pain throughout my right leg. I experience strong sharp pains in my ankle every time it moves or barely bumps something. And a new, alarming pain has begun shooting through my foot, almost electric. The muscle spasms appear to have returned regularly. Combined with full time graduate school and working full time professionally, all of this pulled me into an incredibly dark place.

Together We are Not Alone

Loneliness.  Anger.  Fear.  Laughter.

“Pray that your loneliness may spur you into finding something to live for, great enough to die for.”

– Dag Hammarskjold

 

Trying to nap on my parents’ love seat Christmas 2011 with Ava just a week after my first surgery

I find myself wrapped in my own darkness these days.  Regardless of the number of close friends and family that provide comfort, I cannot help but feel alone – forced into a self-inflicted isolation.  In this solitary state I boil over with a mixture of emotions from pure desperation to crippling resentment.  I fear life, I fear death, but most of all I fear that this is my new “normal” – though, admittedly, anxiety has always resided inside me even before these complications.  I catch myself resenting seemingly healthy individuals on the street.  The key is I catch it and remind myself that the diseases I fight are (mostly) invisible to others.  Judge not lest ye be judged.

Strangely enough I find laughter every day, even as I step into the shadows.  This has not always been true.  It certainly wasn’t true six months ago.  But overall I have (mostly) regained my sense of humor.  If I don’t find a way to laugh, I spiral back into despair.  I still experience days, such as yesterday, when I can do nothing more than crawl into a corner and sob into my pillow, mascara streaking across my face.   There are days I pick myself up, only to drop right back down.  My husband tries to console me, but my condition is not exactly relatable to what most individuals my age have experienced.

Expectedly Hard Days in Unexpectedly Hard Ways

Concerned Strangers

“I would like to explain the meaning of compassion, which is often misunderstood.  Genuine compassion is based not on our own projections and expectations, but rather on the rights of the other:  irrespective of whether another person is a close friend.”

– Dalai Lama

We went to a wedding yesterday for a dear friend of my husband.  I knew it would be physically taxing, but I never predicted the emotional toll it would take on me.  The day was beautiful, but we knew it would be long.  On our way to the campus church we had to turn around not once but twice to pick up items we had forgotten – and we still left the camera behind.  Like all events, the wedding was packed with hurdles, but it ended with one of the most memorable ceremonies I have witnessed.

My beautiful cane

My husband was a member of the wedding party so pictures followed the ceremony.  I sat in the very back, where I could prop my foot up after standing for the ceremony.  I concentrated on the children running around.  Concentration helps me temporarily forget the pain.

The Shades of Grey We Know

The Illusion of Colorlessness

“Shades of grey wherever I go

The more I find out the less that I know

Black and white is how it should be

But shades of grey are the colors I see.”

– Billy Joel

One of my favorite photographs from our 10-year wedding anniversary trip to Las Vegas. It was on our anniversary, and I was getting ready for our big night to see Phantom of the Opera in our hotel, and my foundation somehow dribbled out into the shape of a heart. Even on the IVs, this was one of the best days of my life.

Life is not colorless, despite how it may feel.  As we move from darkness towards the light, the shades of grey slowly regain bits of color, but no one said this transition was easy – or simple.

Fighting an Invisible Fear

The Struggle of a New Optimist

“I like the man who faces what he must, With steps triumphant and a heart of cheer, Who fights the daily battle without fear.” – Sarah Knowles Bolton

From one of my photoshoots with a great photographer who actually came to me for once!

I’m not really certain whether I have truly earned the title of “optimist,” but I’ve certainly come closer than I have ever been.  But it seems as if every moment I achieve blissful optimism a major setback arises – I’m talking about earth-shattering setbacks.  Yesterday I wrote about how great it felt to finally see the light at the end of the tunnel, yet today I received bad news – extremely bad news.  I found myself starting down my old path of pessimism when I left the doctor’s office asking myself, “Why me?”  “Why me” is one of those questions that start us on a self-destructive path to other questions and ponderings, such as my typical, “This is not fair,” montage.  The light that I must focus on is I recognized this moment and stopped to think, not react.  Uncertainty brings a lot of anxiety, and my day was saturated with it.

Some Surprises are Delightful

New Beginnings

“Courage is not the absence of fear, but rather the judgement that something else is more important than fear.” – Ambrose Redmoon

Me feeding the lemurs at the Center for Animal Research and Education.

Some days are more difficult than others, though this last week was particularly hard.  I transitioned into a new position and underwent my third surgical procedure.  While I was plagued with information overload for the first two days, by Wednesday I actually began to feel as if I just might be catching on.  There’s still much to learn, but rather than being overwhelmed I am simply exhausted…but strangely happy.  On a Sunday night, I’m not dreading the return of the work week.  I stay busy, am an important component of journal publications, and truly enjoy my coworkers.

I suppose I might have brushed over the surgery part.  Since my surgery in December, wound care has noted something protruding under my skin that hurt to touch.  It has slowly risen closer to the surface, and wound care became afraid it would pierce the skin and cause another infection.  I braced myself for the worst:  a flare-up of the RSD and the extreme pain from the last two surgeries.

Assuring Everyone You Will be Okay

The Closing of One Door and Opening of Another

“Accept everything about yourself – I mean everything.  You are you and that is the beginning and the end – no apologies, no regrets.” – Henry Kissinger

Taking our picture with Aggieland Outfitter’s Bevo (complete with sawed off horns and marked with our last winning score against t.u.) just three hours before he was taken down forever, marking TAMU’s exit from the Big 12 and entrance into the SEC.  You can see my sweet pimp cane in the left-hand corner of the gate.

I just walked away from my place of employment for the past nearly four years.  The job search was initiated a few months before my federal grant position was scheduled to end:  the downside to soft money positions.

It wasn’t hard to convince my coworkers that I would be okay professionally.  After all, I have a great opportunity starting Monday, and there is nothing to stop me from returning in the future should the cards fall in line.  Shamefully, I could not explain to everyone that requested future visits to see me well that I simply will never be “well” again.  Yes, the wound will heal, but the CRPS will always lurk.  In fact, we see its existence with every emotional outburst during wound care – rapid discoloration right in front of our eyes.