There is more to our illness story

We don't read often enough about physicians who listen and transform patients lives through narrative competence, which only improves clinical effectiveness.  When the patient's narrative is weaved into that typical clinical office visit, what unfolds is a person more than an illness: A richer more complex history that illuminates the cause rather than symptom. 

Rarely are we given the chance to celebrate our community physicians who have provided such a patient experience; that left us more complete than when we walked in and unraveled like a spool of yarn. This is my reason for this blog--a voice to share your illness narrative and mine. 

Illness and how it is cared for or, for that matter, approached by medicine cannot be understood by simply placing it into a category and stamping it with a defined disease because these are its symptoms.  No, that is unacceptable.  We are not defined by our illness, we need to be understood for the difficulties this dis-ease has rendered and unearth causality, context, and emotions that bridge us to our doctor as patient.   This empathic approach garners stories, which often uncovers misunderstood and, possibly worse, misdiagnosed stories. 

As a patient, I’ve been given numerous diagnosis’ and thought I would spend the rest of my life in footwear braces.  My podiatric surgeon, Dr. Joshua Bernard did something proactive and recently performed two reconstructive foot surgeries,  more important, with the first visit he listened to me:  A complex series of events robbed me of my ability to walk.  I’m still healing from both surgeries and my surgeon has been available to me via phone or email every “step” of the way.  But the narrative quality of his care has already healed me beyond words.

"You're not a typical case or you would be dead by now!"

How does one push away thoughts told by your physician, that, since, you are not a typical case of a certain type of patient with a life threatening disease that you would be dead by now if you were?  I was told that I had such a disease, but I did not believe the physician who told me.

I'm glad because maybe that is why my healing quest has been fueled and channeled to find answers to why my ability to walk deteriorated over time.  So here I am, not dead, but alive with the Spirit inside me guiding me every day.  My quest to understand and go forward with two difficult, invasive and painful foot and ankle surgeries.  I know those around me are watching, wondering if the podiatric surgeon who did something proactive will prove his mettle and intelligence in the orthopaedic arena.  I want to celebrate him and me, and, yes, say I told you so.  But I must remain calm and professional--because of where I work, and allow his art to speak to the volumes I want to say.  To produce a narrative healing for me and others with similar issues that did not know there was an alternative to not walking or living in braces for the rest of one's life. 

I am practicing walking with the walker; it is painful.  The edema won't subside.  I'm determined.  I will heal and walk and be Dr. Bernard's quiet, but ever so loud victory, that there is another way.  And yes, I am not the typical case!!  Thank the Lord.

I walked today

I walked today for a few minutes using a walker.  The left foot was sturdy, which is the first foot that had the eternal fixator removed. I felt confident standing on it.  It got sore after a few minutes, but I was happy to be up out of my wheelchair.  I even baked a french apple pie.  Today was the beginning of what my tomorrows will bring.

A Nutritional Healing Protocol

Back on the program, actually I was never off only days before surgery did I cut out a few things.  I am a firm believer that what goes inside the body manifests what happens on the outside. When all this started: the weaknesses in my legs and inability to walk balanced, I became acquainted with body testing. Our body has a unique ability to tell us what we need if we learn how to listen to it.  A critical component to this directed protocol was aligning myself with a woman who has spent 35 years in the health and nutrition field.  She examined every area of what my body needed to get me back on track and arrest a virus that was triggered by taking statin medications.  I spent considerable time researching how statins can destroy us--literally. They mimic horrible disruptive neurological conditions that can be mis-understood for life threatening diseases in the body.  Left unchecked, we deteriorate quickly.

So began an intensive program to eradicate a virus and supply my body with a nutritional protocol to help me regain my strength back ( I will be publishing this in time).  The virus attacked the weakest link in my body; my ankles.  Yes, the end result will be me walking again, but along the way paying attention to my divinely instructed messages from God through prayer is one supplement I cannot survive without.

How bout' those toes?

Today I stared at all the sutures in my right foot: the ankle joint, toes and the heel all showed off their fresh surgical incisions.  As the bandages were peeled away from the left, the toes were straight not curled under, but straight showing off my toe nails.  "How about those toes, Dr. B?" "Does everything look alright?" I ask. He tells me enthusiastically, "they look great!"  The left foot needed a compression sock.  I'm able to place all my weight on my left foot, yet it's still very sore--tender where the rods were once running through my foot to stabilize the ankle.

Doc speak: "Good luck with that!"

I never noticed professional jealously until as a patient I witnessed it myself.  However, I'm not sure what's worse seeing it or being the target of poor physician communication.  Patients hang on every word said and not said, and this physician is not aware of how he speaks to his patients.

In the beginning of my quest to find out what actions I needed to do, one orthopaedic saw me three times; once, to place me in braces, and twice to send me to neurologists. He is a foot and ankle surgeon and never mentioned any type of surgical procedures.  Once in the hands of the neurologists, their wait and see with me only allowed my ankles to get worse and weaker.

His last comment when he saw me conversing in my wheelchair a couple weeks after my first surgery and asked about the "external fixator," (it's three metal rings that protrude outside of the ankle; it really looks like I stepped into a lamp shade) that adorned my left foot.  I replied that Dr. B wanted to get me balanced again with my gait and performed the surgery.  "Oh," Dr. S replied, looking surprised that I did not seek his consultation.  "Good luck with that" and walked away from me.  And to think I was his patient.  Dr. B reminded me after I told him about the brief conversation, that it is all about the patient. Due season for me was finding Dr. B.

The Procedure: Ankle Arthorodesis

Day 6 after surgery:  The pain lessens with each day, thank God.  I can stand on the left foot where all 9 rods that went from one side of the foot through muscle and bone, then extended out to attach to a circular metal cage and fix my ankle in place, was removed after 10 weeks. Sorry, for the graphic picture but I thought it would help illustrate my disscussion.

So, what did I elect to do after walking and losing my balance for two years: Ankle arthorodesis.  This is a method of treatment for drop foot in patients who are not candidates for tendon transfers.  It is aso an effective way to improve gait efficiency and potentially eliminate the need for brace wear in patients.

After a long, frightening and frustrating journey, in 2007, I felt that my primary care physician was not listening to me.  He insisted that the statin medication I was taking for high cholesteral had nothing to do with the persistent weakness in my left ankle.  In addition, two orthopaedic doctors took a wait and see attitude, never once placing my feet into their hands to physically examine me and threw me into braces where I lost muscle and function of my ankles. Over the course of the next couple of years, three neurologists had varying diagnosis's consisting of lower motor neuron disease, ALS, neuropathy; then, by late 2010, it was decided that I was not a classic patient with those symptoms, or "I would be dead by now." Thus, my suggestion to see a recommened podiatric surgeon was a good idea.  Yes, this was my final recommendation after my countless visists to chiropractors, acupuncturists, physical therapists, water therapy, and, most important and crtical to my healing, a nutritional plan ( I'll save that for another posting).  This was my quest to heal and correct my condition, while rejecting one physician's death sentence after spending about 10 minutes with me.

Due Season is Now

I'm four days in bed following reconstructive foot and ankle surgery.  It's the second operation, different foot.  Rods, pins and screws reshape a foot struck by a drop foot deformity most likely (I believe) by two severe ankle injuries that caused peroneal nerve damage. I've wanted to write for a long time, but a woman I work with always said in due season. "You write when you are healed," she'd say. I'm not sure why I listened to her for so long, after all, I'm a writer, but this ordeal of gradually losing by ability to walk, my public falls, fracturing my tail bone twice, aniexty and depression affected me deeply.  I needed a platform, so here I am, blogging. I don't know the outcome of how both feet will respond to these surgeries--I'll keep you posted.  My surgeon's goal: get me walking again, balanced and stable. One thing is for sure, I've had to direct my healing along the way.  And it's been a very long journey.


Anotole Broyard once wrote, “Storytelling seems to be a natural reaction to illness…Stories are antibodies against illness and pain.”  Once you hear that you are ill, story emerges with an unwavering grip in your gut that you need more answers, reasons and questions as to why this is happening now.  I have been to numerous doctors, specialists,and health care providers to determine why I lost my ability to walk balanced and stable.  I push every day to examine my health, and how best to arrest what once assaulted my body.  My strike back has been fierce, taking every bit of energy I can muster to swing back.