Just Pray: The Commencement of my Life’s Next Chapter

   

The other night I finished reading a book by Rhonda Byrne entitled, The Secret; it chronicles the great philosophers, inventors, and avatars throughout time, as well as present ones, whom illustrate by example that our thoughts have physical power, and that thinking about something is the way to get it. Thoughts are magnetic, and thoughts have a frequency. As you think, those thoughts are sent out into the Universe, and they magnetically attract all like things that are on the same frequency. It's a good read, but there are two words I want to reiterate spoken to me by a retired surgeon (one of many doctors I have seen over the years), "Just pray." Sage advice, and words that truly embody a view of life where the details are determined by an entity greater than ourselves. So, believe me, I do that daily, and attitude is everything.  Both practices mirror each other under one common denominator: Trust.  And I'm convinced “believing” has carried me this far.  As the apostle Paul said in another great book, the Bible," We walk by faith, not by sight" (2 Corinthian 5:7); it is this belief that has prepared me for whatever is to come my way.

 

    Over the past several years, I've spent a considerable time self educating on corrective ways such as nutritional supplements to aid in my healing and prepare me for the clinical drug trial I'm starting Monday.  Every day we traverse paths and meet people (angels) that help us along the way. Abby is one of those special human beings that dedicates her life to educating others on alternative natural solutions to taking drugs, or other nutritional ways to heal our bodies.  Honestly, I don't know where I'd be if I didn't meet Abby along the way. Abby is a healer in several ways: She understands the body, nutrition, and when she meets you, it's as if she had known you your whole life.  She's been helping people from every walk of life and ailment for the past 35 years in Tampa, at Abby's a health and nutrition store and destination in itself! To her, I am grateful because our bodies are a chemistry under fire at any given time and her guidance of balance has been necessary when dealing with a body under seize.

    After several months of establishing a baseline: Tests for strength, breathing, visual, abdomen ultrasounds to check my spleen, gall bladder, and kidneys, and countless vials of blood, the drug used to promote stem cell production will be injected into my stomach next week. Finally.  The drug is designed to target my bone marrow where stem cells are produced and ramp up their production.  My white blood cells will go up considerably because the body will be tricked into thinking there is an infection. This will have to be monitored closely. The drug trial for my disease has not been conducted anywhere, so we are hopeful for a few things to happen as has been demonstrated in mice and supporting research data.  The drug slowed and in some research reversed the progression of motor neuron disease and improved function. But the drug must be injected 5 days in a row every month through the stomach for a year.  So, you know I what say, "Bring on the injections and just pray--for me, and all the other people who can benefit from this trial!  

    Thank you for your prayer, that powerful practice we send up into the universe and beyond.  Now I'm ready for the next phase of my life to begin.

Touching Lives

It's been two years since I started writing this blog detailing the phases of my foot and ankle surgeries. My story has taken twists and inconceivable turns learning about a disease that has no cure. I certainly was not prepared to hear this news, nor did I want to face where it would take me. How can we really be prepared to discern the outcomes of something that is in motion inside our bodies and outside our control? But with time and trust, a trust in God that I affirm daily, adverse circumstances become growth opportunities. I formed a new habit of continual assertion of trusting, for the blessings are visible in my life and those around me.

With the reigning in of a new year, 2013 offers hope for several patients and me. Yep, this posting shifts away from my own problems of helplessness, weaknesses, and dependency on others to get through my day. I will be touching the lives of others in an unexpected and meaningful way; participating in an experimental stem cell therapy study.

When the onset of my motor neuron disease began, in 2007, I had vague notions of what was happening to me. The time frame is, however, very clear; I had finished graduate school in the month of December. As I sat in the auditorium waiting to walk across the stage and shake hands with the president of the university, I feared my shoe would fly off and hit a distinguished professor in the head. By then, I had the beginning stages of drop foot, and little control of the dorsiflexion in both of my feet. By 2008, I was working for my Alma mater, USF Physicians Group. My role as director of physician and community relations focused on improving the patient care experience; little did I know what journey lay ahead for me as a patient in the health care system that I worked in.

I quickly recognized that my role was critical for patients seeking timely health care. For many, time is of the essence. My own complicated health ordeal made me more responsive to those desperate  for answers or direction, navigating an already complex health care delivery system.  When I got that call from a patient, I suddenly forgot about being tired and knew God still had things for me to do here on earth.  In fact, it's the "where I'm at today,"--working for an academic university health care system, that epitomizes a miracle in itself. In other words, I feel fortunate and blessed to be working in an environment where research is at the forefront for the treatment and cure of world diseases. If I ever questioned finding a purpose, the answer for my life couldn't be more obvious.

As the years passed, my love for my work was observable to others as was my own health circumstances.  However, I would not let my own distress weigh me down when educating the community about the services and specialists at USF Health.  The business of health care, whether in an academic setting or private practice, was also about increasing patient volumes and improving communication practices to make it easier for the patient.  This challenge kept me both excited and engaged, and continues today to do so.  Still, I had a very different idea about what I was dealing with; chalking up old injuries such as severe ankle sprains for my loss of walking, balance, and coordination. The act of standing on my own two feet was certainly something I took for granted, but, with time, became difficult and horrifying. I did not want to believe I had a motor neuron disease. By January 2011, I had painfully survived four surgeries: fixators to stabilize both ankles and screws to straighten disfigured toes.   As that part of my body healed, other areas, such as my arm strength and hands, weakened. Soon after the pain subsided from my ankles, I was tired and had accepted my diagnosis of PMA (progressive muscular atrophy).  The process was doing just that; slowly progressing.

As I reflect on the years, before leading up to this point, I can't help but think of all the miracles that have become part of my story. I'm so grateful for my family: My daughter, Emily, and, my husband, David as they continue to be unwavering in their attentive and loving care for me. If I had been working anywhere else, I would not have the privilege or opportunity of knowing physicians, specialists, and studies available to me or others needing specific health care. There have been numerous instances where people in my work environment have helped me manage my personal tasks such as opening a door to a bathroom.  Or when I have fallen, I was lifted up by my co-worker angels. And on any given day, I have directed patients to studies, support groups, or physicians specializing in their illness.

And now a different journey has presented itself; the opportunity to receive an experimental stem cell therapy for patients with motor neuron disease. This treatment required the philanthropic financial donation from someone willing to fund the study. My neurologist has his office down the hallway from mine and one day explained the financial need in order to continue research in this area. Given my diagnosis, I was a candidate for the study, but without funding we couldn't move forward  There is no cure for my disease so I immediately accepted this news as an assignment to move swiftly on. In fact, securing funding was necessary to proceed given the high cost of the drug and other costs associated with research studies.  Another miracle happened: Through the generous donation of a longtime friend of my family's, the funding allowed five patients to participate in the study.

Future postings will chronicle how I'm doing once the study is in progress. I cannot report on the progress of the other patients because I won't have access to them or their status.  I'm about to commence a six week intensive screening to obtain the baseline data necessary for the research study.  Yes, I will be a guinea pig. Only God knows where this journey will take me, and I gratefully receive it.  But in my own brother's words, "At least you have a journey to take, Gina!"

Touching lives has truly become a miraculous way of life.

Sometimes Things Change

For some time, I've been blogging about my experiences with reconstructive foot and ankle surgeries. After almost two years, my ankles have healed beautifully. However, even though  surgery had to be done so that I could stand on stable ankles, I still require the use of a wheelchair because my legs are not strong enough to walk. And as it turns out, I had weaknesses in my legs and ankles prior to the injuries.  In fact, it's believed that I have lived with a neurological condition for years. The diagnosis was determined after numerous tests, MRIs, x-rays, blood work, and endless physical examinations. Though, I will always maintain that the neuromuscular disease that I have been diagnosed with was triggered by the use of the cholesterol medication lovastatin. The clinical research is out there -- the drugs used to save us from a heart attack do more harm than good and mimic lots of horrible diseases.  So, in the words from a childhood friend, "sometimes things change for a while." Now that sure puts into perspective what I have endured over the last several years. And believe it or not, I'm okay with re-framing my life.

Over the past couple of months, I went back to the specialists and was diagnosed with a neurological condition that has weakened my muscles. I didn't want to start writing with this news, but I did want to deliver it straight.  In other words, it isn’t all good as I indicated several postings back. But at least there is a reason behind why I feel things have taken so long for me to walk. And, besides, the whole family needed answers especially my husband and daughter. 

There is no treatment for PMA (progressive muscular atrophy). However, after I pressed my doctor for a regimen to preserve and nourish the healthy neurons in my body, my neurologist placed me on a heavy supplementation plan that included high anti-oxidants, vitamin C, B-12, Co-Q10, vitamin E, 3 grams of Creatine and 6 grams of Spirulina a day. This was the first integrative conversation about nutritional therapies I've ever experienced with a physician. My neurologist is one of the top specialists in his field and says there are clinical studies about helping neurons to regenerate but they need support. Believe me, I pour over any research I can get my hands on. So the goal is to slow the progressions and infuse my healthy neurons with the proper nutritional support because the healthy ones adopt those neurons that have weakened. In layman's terms, basically, as a neuron travels from the brain to the spinal cord, it sends a message to the muscles.  If the neuron is over excited or over fires it can die before sending a message to the targeted muscle. This eventually can weaken the muscle and cause atrophy. I could live this way for years even decades, but it's unpredictable. However, there are promising new drug treatments on the horizon. Although I'm praying that the nutritional program will produce signs of progress with my strength and mobility, since it was a medication that rendered a dis-ease of my life at the start of all this. I promise to report on any new developments on this supplementation regimen because it holds promise for the healing of numerous medical conditions.

Living with this so called atypical neurological condition isn't easy. Many everyday living adjustments and accommodations are now part of my life. I've lost many of the liberties and functions we take for granted like walking, driving, cooking, attending my high school reunion, dressing, painting and dancing in my living room ("living" being the operative word). However, I am still exercising in the pool to help increase my mobility, range of motion, strength, and overall health.  And I am still working a full time job in the healthcare industry at a university. I am grateful to still be contributing. 

A once distant description of myself, patience has now turned compeer. I have a steadfast gaze toward restoring my health and a peaceful spirit to guide me. Yes, sometimes things change in a big way, and it's not always in the ways we envision. But when we decide to embrace them, the unexpected allows us to discover an unexplored version of our life yet to be lived.

Disentangled

"Sunset Calling" by Gina Rathbun

It's been awhile since my last post; my reason is pretty lame. I couldn’t write. Not even one sentence you’d be interested in reading. I've been busy trying to keep it together.  Outwardly, I'm sure no one noticed; but inside I've been exhausted and down on the progress of my healing; wanting results from the investment of time spent on exercises I have been doing to get me out of the wheelchair. Patience is truly a virtue and I don't have it.  I suppose I possess it in shades now by default, but I've had no choice in receiving an unwanted attribute given all that I have endured already.  This experience has been grueling in every sense of the word, and I wish I could say that I'm further along--not running just walking. Some see the progress--they don't live inside my everyday world, which blinds me of where I'm at.  My chiropractor, Dr. Mohr, sees it, with each adjustment to disentangle a body that has been more stationary than in motion.  Truth is, it wasn't until March that I could stand without pain on my right ankle.  Meanwhile, the rest of my body has fallen to a more sedentary lifestyle because walking has been flat out hard and some days impossible: my legs weakened from non-use and my body has more around the middle--sitting for long periods will do that to you.  On the positive side, I've started rebuilding in a pool.  This new found movement has allowed me to pool walk, an exercise that has liberated me from the apparatuses used to keep me mobile on land. 

     A couple of months ago it became a state mandate in Florida to have a chair lift at community pools. And, fortunately for me, the installation and timing of the chair lift was convenient and, well, miraculous.  I got to a point that re-learning how to walk required more therapy and use of more muscles to help stabilize and balance my gait.  The foot and ankle surgeries did the job of allowing me to stand firmly on the ground, but I needed to work all the muscles around my ankles, since they were adjusting to a new distribution of my weight.  My community pool is just across the street from my house (I never wanted the expense of up-keeping my own), and now I'm in the pool no less than three times a week. The chair provides assistance to get in and out of the pool for those who don't have the strength to climb stairs or have other physical challenges.  I can walk in the water without assistance--no holding onto the wall or floaties, and the activity has lifted my spirit and attitude as any good exercise will do.  And the best news, I'm walking on my own in the pool for the first time in over a year and a half.  My prayer is that this activity one day will transfer to land.

    For those of you who have followed my journey and surgeries, this post acknowledges two critical components to regaining movement and strength: chiropractic adjustments and aquatic therapy. Both manifest positive changes in the body, and, in my case, support each other. My chiropractor, Dr. Mohr says, "Adjustments create more motion in the spine and allows the nervous system to work optimally."

    Pool therapy is useful for a variety of medical conditions by using water to assist in healing and exercise performance.  The first time I entered the pool the buoyancy supported my weight thereby decreasing the amount of weight bearing on my joints--especially my ankles.  Suddenly, I was performing the exercises that I had strained to do on land. I can now incorporate the resistance of the water, which allows for muscle strengthening without the need for weights and is less painful to perform. Aquatic therapy also utilizes pressure to decrease swelling and improve joint position, and, as a result, and, according to the research, improves pro-prioception.  Increasing blood flow to injured areas is so important to healing; I only wish I had submerged myself into a pool sooner or was told to do so earlier. 

    Not everyone is a candidate for aquatic therapy and always check with your physician before doing a program.  However, for me, incorporating therapies have not only improved my attitude and strength; it has disentangled both my mind and spine, while standing a bit taller and staying focused on the end result: walking again.

Screwed: There's More to the Story

It took a skinny second for me to decide the next title for this blog: "Screwed" seems apropos, after all, screws now occupy 6 out of my 10 toes; all are fused at the second joint. So, allow me clarify an ambiguous title, yet not so bewildering if you have been following my story (feel free to peruse prior posts).  I suppose, I feel that way too, metaphorically speaking; it's the anger that creeps up inside because I'm worn out from everything I've endured over the last couple of years.  

First surgery: Ankle Arthorodesis to stabilize foot

In addition, I feel disillusioned by my primary care physician who convinced me in early 2007 to take a drug (statin) to lower my cholesterol, which soon caused weakness and nerve damage in my legs.   In 2007, I was told I was a walking candidate for a heart attack--224 was my number.   Although, I was fit and healthy, hereditary factors determined the drug was necessary even though no one in my family had high cholesterol.  I'm convinced that taking this drug resulted in injuries to my ankle.  Yes, there's more to this story.   

Surgery to straighten toes

Since my surgery last November, to fuse my left ankle for stability, then my right, I still needed a little tweaking. My toes did not lay straight and screws would fix this, as well as aid with balance when standing. On December 23rd, I completed my triad of surgeries in thirteen months. This has been tough on the body and mind for sure as I'm still recovering and healing from the two prior surgeries.  Ambulation still requires assistance via the use of a wheelchair or walker. Believe me, I have my moments where I wish I could jump out of my chair and run screaming into the night; restriction of your mobility will do that to you. However, writing is cathartic, and if my experience helps someone, then I'm grateful.  I receive comments that keep me committed to sharing this journey with you.  And, I try to write as honestly as possible.

On that thought, and to honor those who have commented along the way, thoughtful and honest prose isn't easy.  For that matter, writing is hard work especially when it feels like you've self injected truth serum and made a vow to no holding back.  I owe this truth telling moment to the training and teachings of my former graduate school professors, Dr. Carolyn Ellis and Dr. Arthur Bochner, who taught me that writing autoethnography requires the researcher/writer to bring truth to their story and become a coparticipant when telling it.   In other words, "engaging the storyline morally, emotionally, aesthetically, and intellectually" (p. 745) are indelible inscriptions that guide a writer.  As a writer, if you can accomplish these things, then your reader is probably going to finish what you've written. But writing this way can also make you feel like you're standing naked in the wind with a really bloated stomach.  There's a lot to convey and your hope is that your written work reads organized, honest, and not randomly.  To quote my well respected and admired professors, Autoethnography is "an autobiographical genre of writing that displays multiple layers of consciousness, connecting the personal to the cultural" (p. 739).  Without a doubt, many blogs deliver this kind of authenticity and fall into this genre of writing.

Back to my status: my toes are still swollen, red, and tender at the tip--the point of entry for the screws. I feel like I've gone backwards in some ways.  My daughter describes looking at my toes as if someone chopped them off, and then sewed them back on. Other, than looking like a rag doll, I'd say they look good, not great yet, but decent.  Again, I'm aiming for functional feet and aesthetics, at this point, doesn't carry a lot of weight.  But this is definitely the way to go if you suffer from hammertoes or claw toes; painful foot disorders that interfere with walking. I developed the toe condition over time due to injury and nerve damage. My advice for severe conditions of your feet: don't waste your money on products to straighten or align your toes; they simply don't work.

Every day I learn about the trials of an other's health issue because my work places me in a position where I must align or advise patients on who can best help them with their own life threatening disease. I have to act swiftly in identifying specialists, coordinating their care, and navigate the often complex healthcare systems for the patients. The disparate calls continue to come in daily from patients, providers, and my constituents to act on immediately for assistance.  And I willingly serve as a conduit to their care.  Isn’t it funny how life’s circumstances provide new insights and meaning to your own place in the world?

References Cited

Ellis, Carolyn and Arthur P. Bochner
_____2000 Autoethnography, Personal Narrative, Reflexivity: Researcher As Subject, in N. Denzin and Y. Lincoln (eds.) THE HANDBOOK OF QUALITATIVE RESEARCH (2ND EDITION). Thousand Oaks, Ca.: Sage, pp. 733-768.

It's All Good

I wonder, is it all good, really?  I'm quickly reminded by friends and family even strangers, from time to time that it is. I take inventory of where I'm at: walking more on my walker, working, celebrating my progress one day at a time, loving my family and, well, living.  Where is the proverbial measurement of all being good in the world?  Yes, attitude is an essential ingredient when it is my world (or yours) that is evaluated, but still the desire for more of where we are in life evokes great introspection.  We each have heard someone's story of suffering, loss, pain, and walked away counting our blessings.  Did it feel all good then? I'm not so sure; grateful perhaps, but not necessarily good.

The holidays arrive and reflection stirs the conscience to articulate before family those things we are truly thankful for.  The sermons at the dinner table usually suggest all is good or we are praying for better outcomes of circumstances.  But in my Italian family, storytelling is a "one up" occasion; done between raising our glasses and voices to get our opinions across.  After much mocking, there is love and indigestion that fills the air and our bellies.  My mother reminds us all of the great difficulty and days it takes to prepare meals that bring our families together.  On the heels on Thanksgiving, I'm grateful for Skype and, of course, one another.

Yesterday, I made my first lap around the office with my walker.  This is a long awaited transition from wheelchair to walker, after seven months free from the external fixators that fused my ankles.  I got up from my desk and decided today I would make the journey down the hallway.  My heart pounded as I rounded the corner, legs heavy with each step, beads of sweat glistening (sounds better), and laughing with tremendous nervousness. But I safely made it back to my desk thinking all is good.  That's right, I celebrated the moment that all was going right in my world, that my healing was headed in the right direction however long it takes before I'm whole.  I suppose this definition of whole translates to walking for me, but today I felt whole, encouraged and energized by my first lap. Yes, it's all good wherever we are in life; we just have to decide that it is.

Guided Sympathy

I have been chronicling my experiences with my reconstructive foot and ankle surgery, the events leading up to those surgeries, rehabilitation, and the status of my healing and mobility since last January.  This has been a complex situation, as my surgeon often says, "No one knew exactly what was going on with you." But through this whole ordeal, I'm not sure if I have intentionally stayed away from talking about the delicate balances between the care provided by my family and recognizing their own needs.  How have they avoided being engulfed by the day-to-day responsibilities of caring for me? Or are they engulfed and decided not to complain, be honest with their feelings, or just broke from exhaustion? Perhaps, I was afraid to confront their fear, anger, or confusion.

I can't help but wonder how they strike a balance between their own emotions and level of involvement taking care of a family member. Are there limits of sympathy?  Not that I spend a great deal of time wondering; I know where their sympathies lie.  I suppose while I'm encouraged, daily, to stay the course, I'm just grateful they have too, alongside of me.  One thing is certain; these have been mutually transforming experiences, and as a family, we have grown closer.

I feel a special obligation to my family to honestly convey the complexity and humanity associated with having a deep capacity to care for me as their wife and mother. Without a doubt, having your independence taken from you affects everyone involved; and most importantly, concern for their personal health weighs heavily on your mind during the caregiving process.  I know there is a distinction between me and my physical challenges, but it's emotionally difficult to hear the frustration in my daughter’s voice from time to time; then, I realize, the proverbial line blurs between the distinctions.  After all, when a family member has a "personal illness/trouble" the whole family and the coherence of everyday life becomes disrupted.  I recognize these things and, particularly, the responsibilities that both my husband and daughter have dutifully assumed.  But I do not want them to lose themselves for the sake of loving and caring for me.  I'm deeply aware of the caring ideals that our society promotes.  They assure me that dealing with my health issues have invoked feelings of satisfaction, as they have become part of the healing process.  My husband says, "This is just what families do."

I've learned from both of them that their selflessness has defined a caring ethic.  My family emulates love and compassion without having a second thought about my care; and, I'm confident their spirituality has guided them every step of the way with no limit in sympathy.

A Body Synchronized



Bodies in Motion



Synchronize: to cause to go on, move, operate, work, etc., at the same rate and exactly together.  Yes, this is what I want my legs to do; walk in step at the same time.  I want to hold my husband's hand with my daughter on the other side of me and stroll carelessly along the shore; no thought given to the footsteps left in the sand. I want to become the 'monkey in the middle'. I smile with this memory recalling the moments of swinging Emily when she was young high up towards the heavens, in a synchronized fashion with a count of 1, 2, and then 3 as she was propelled into the air.  Perhaps this leisurely stroll won't happen this birthday, but it will happen.

Do we take for granted the harmonization that our bodies require while in motion? I sure did; never gave it a second thought.  Now, I have to integrate the motion of walking by simulating it while peddling on a stationary bike.  Two small weights in each hand sway back and forth opposite to the knee pressing the pedal forward.  This movement reorganizes and reprograms the brain to shift the body's weight while walking. Aiding the process of restoration and healing are countless isometric exercises designed for balance and coordination. Yep, it doesn't take long to lose function when the body has been immobilized for almost a year in a wheelchair.  But now I can stand and place all my weight—which is more than before all this took place—on both ankles that underwent reconstructive foot and ankle surgery to restore my foundation.  X-rays taken yesterday reveal complete fusion in both ankles and toes.  Now the pain I have from time to time is just when I've been moving around my house with my push walker.  It's hard not to overdo it when I desire freedom of movement so much.

Last night's weight training left me invigorated.  I had great energy when I awoke this morning.  For the first time, I used a walker to get to each of the nine machines that I train on.  And I thank my daughter who has become my trainer for having patience with this important and critical activity.  God's plan was at work when he provided her the opportunity to work at a personal training and physical therapy center in our neighborhood.  Her work benefit allows for one family member to train on rehab equipment that, otherwise, would have been very expensive to commit to for the long journey ahead that I have. 

The notion of having a body synchronized fills me with thrilling, and, sometimes, elusive prospects of a body in agreement with movement and affected by life around me: A body that can respond, react, and adjust to what is in front, behind, and beside me; a body in harmony and in sync with itself.

A friend reminded me how blessed I am and, yes, we all come to periods in our life when we need and want more than what is currently in front of us. She told me that in the spiritual realm the prayer of faith works "immediately," and that I must speak healing into my body and life into my legs.  It didn’t take much pondering about her prescription on how faith unites us with a synchronized self.  And there is no doubt by following this prescription, my investment of time and sweat equity will rebuild and restore function to my body longing for its new found synchronization.

Anticipation

It's been more than a few months since I've posted to this blog.  I suppose I had a fantasy of sharing a miraculous story after a few months of starting physical therapy, that I was walking unassisted--no wheelchair or other apparatuses to keep me upright.  But time is what I need; I know this.  My ankle surgery was invasive and painful, and the legs need major strengthening. Cosmetics now have a place outside of my consciousness, as I no longer care about the scares that decorate my ankles and legs--I simply long for function. 

Last week, as I lay on the mat ready to begin my physical therapy session, Carly Simon's song "Anticipation"  played on the radio nearby. Her lyrics resonated with how I feel. While painstakingly moving through each motion, in an effort to regain balance and stability, the words carried a message.  "So much effort and energy goes into anticipating, I recalled.  I'm constantly anticipating when this or that will happen; it's exhausting."  The mental struggle sent a tear down my cheek.  The taste of salt was a subtle reminder of how much water I have retained in my body.  But somehow my crying felt joyful; a renewed life surged through me as I counted each repetition with resolve.

We can never know about the days to come
But we think about them anyway

Anticipation, anticipation
Is makin' me late
Is keepin' me waitin'

I receive a modicum of change that says I'm improving with each session.  I hang on every positive word of reinforcement from my physical therapist like a child: Good job, your legs are getting stronger, great session.  I focus on the goal, the outcome, of where I want to be--hesitant to give myself a date.  The legs are being re-educated; the hip flexors and abductors forgot what they are designed to do.  Each day provides nuances of change in my legs; and my ankles hold up a body which weighs considerably more than when all this started.

I don't know about the days to come, but for now I'm celebrating those small accomplishments that lead to bigger ones.  For instance, I can now pedal on a stationery bike for about 20 minutes.  This exercise alone helps with strength and proprioception.  I've increased the amount of reps of each exercise I do, too.  And my surgeon is quite pleased with my progress. I was happy to show off on my walker even if it was for just a few minutes of methodical walking.  Oh, and I bought my first pair of flats (ballerina type shoes) and wore them to work.  It was the first time, in two years, I could slip on a pair shoes without braces and all the other little gadgets I once stuffed into my shoes for comfort.

Anticipation.  Its very definition means expectation or hope: I have both.  I expect to walk, it's the waiting for that day, when I let go--get up and out of the chair that I have to work on.  As Carly sings, "I'm no prophet and I don't know nature's ways," I sense calm, resilience,and, agreement, that these are the "good ole days". Going through the process now--living in the present--will bring reflection later on of just how far I've come.  As both the song and I fade away (me, from my workout), a vow is promised to keep the Faith while "waitin" for the next step to emerge from me.
Thanks Carly for prompting me to write again.

A Soldier's Inspiration

The other day, feeling defeated after therapy, I sent my physician an email; it was brief explaining how it felt to stand on my very sore and weak ankles.  Therapy was taking its toll on my psyche, and I wanted to voice my frustration.  Dr. Bernard replied back to me and shared an inspiring story about one of his VA patients: a soldier.  My surgeon's soldier story displayed tremendous ethics in listening and care, as I can only imagine how many voices of those who suffer he must listen to. Recognizing my own fears and frustrations, his heartfelt patient story helped reshape my own perceptions about the challenges I now face in therapy. This soldier endured great pain, disfigurement, transformation and survived a horrific explosion.  How truly fortunate I am to be inspired by a courageous human being and physician. 

When your doctor cares...

Gina,

It sounds like you are progressing at a predictable rate. I know you are frustrated and eager to be "cured" and get your life back. Unfortunately this will take some time and "sweat equity" before you get where you want to be. I would not focus on the drop foot since I feel it's a small residual of your previous condition. It will work its way out once your regain some muscle strength on your extensors. My job was easy compared to what you need to do now. This is a battle for you and I would probably be correct in saying one of the more difficult challenges you have dealt with.

I have to share a most touching story with you about one of my VA patients. His name is Joel and he is a 21 year who was severely injured in Afghanistan  one year ago.  He was blown out of a HumVee by a roadside bomb. He lost one leg and suffered a severe concussion and was burned over 90% of his entire body. His hands were burnt to a crisp and most of his fingers basically were cooked. To date he has had over 50 operations mostly skin grafts. His remaining foot was burnt and fractured from the explosion so when I first saw him last year he was basically in a coma, unresponsive to any commands and had no strength to his foot. I could have stuck a knife in his foot and he would not have felt it. We basically set his foot in a cast thinking he would never walk again or even be able to get out of bed. He was sent to San Antonio for several months of additional  plastic surgery and recently came back to our VA for more rehab. Joel is now walking unassisted with a prosthesis  and able to speak and use what remains of his stumps for fingers. He can  now partially see out of one eye. He can almost crack a smile through his charred skeleton face. But his will to live and overcome this immense tragedy prevailed and I am grateful to have met a human who has been to hell and back and won. I will never complain about anything in my life ever again.

You can beat this and regain your function and return to a level of activity and quality of life which you once had. Keep fighting or fight harder but you will win this fight if you want to. 

My money is on you. You are blessed with a wonderful husband and daughter and it doesn't get much better then that. 

Put your boxing gloves on  because this is a fight for your freedom and your life back.

Josh 

Embodied Vulnerabilty in Therapy



Leonardo Da Vinci

 Like any good mystery story, we cannot predict the ending, yet we know there will be a resolution.  I admit, I want a clear resolution to the when I will be up and mobile from my wheelchair, but this, too, must come with time.   I write and think this with a determined mindset and a mixed bag of emotions:anger, frustration, fear, impatience, enthusiasm, weariness; while acknowledging an embodied vulnerability to the recovery process ahead.  These feelings were represented in my painting called Morning Glory, which I wrote about in a previous posting, Art and the Spectacle of a Foot where I link art and its suggestive narrative of the human experience and physical loss of function to my left foot (painting an incorrect anatomical deformity) to its emotional effect on me and the viewer. After all, this was my aim--to underscore my own vulnerability through art.  As the English Romantic Painter, John Constable wrote, "Painting is another word for feeling."  But I also believe there is a Divine order, and I can't interfere with this process either, while visualizing this resolution.  Rebuilding should yield a return on my investment of time in therapy. There is a steadfast commitment on my part: work hard at physical therapy, eat right, take my nutritional supplements, watch my weight, and sleep--sounds like a stick-to-it plan.

This narrative is the rewriting of my outcome, a solving the "mystery" if you will.  Yet, this mystery, once scripted quite differently by other physicians, casted a much darker demise: a portrait of illness not wellness.  Progression had another connotation, a meaning of backwards not forwards.  I prefer its meaning I hear today, a word that signifies strength, improvement, vitality, and where I now control the edits.  There is no contingency of dis-ease, nor an acceptance of it.

This rewrite is a process where I move through the physicality of pain with therapy.  The pain I invite, along with the steady signs of improvement.  The predominance of the physical is at the expense of both my mental and spiritual self.  My mind and body wants more--those signs that show progress is happening now.  I want to be able to let go of the devices that keep me standing, balanced and stabilized.  It's difficult to let go and escape the fears that enter my head; they weigh more than the weight I now carry.  With each exercise, I struggle to lift and push and pull my legs to reintroduce patterns of movement once done without thought.  My heart pounds inside my chest and my palms sweat fearing any fall that would set me back.

My therapist has loaded me up with exercises at home, and I easily become frustrated because I'm more tired than eager to do them.  It's still early in the rebuilding, but I remain committed to process and outcome--a mystery still yet to reveal itself completely...

Pain Meds' Costume




The Birth of Venus by Sandro Botticelli

After six months of being on pain medication, there is no question that withdraws from the drug is difficult and scary. The drug can have physical and psychological side effects when taken for long periods of time.

Its addictive properties mask pain wherever it lingers, and the longer it's taken, the greater the reliance. But pain meds' costume eventually has to be dis-robed, stripped of its disguise to parade around as comforter and healer.  And the realization of detoxing from the drug can trigger a panic attack, as what happened to me.  As the pain in my ankles lessened overtime from both reconstructive surgeries, I knew I needed to rid my body of the drug's toxic poison that had accumulated inside.  I had no idea that coming off this medication is similar to what an addict goes through.   

I didn't realize that although I was taking just a couple to a few a day; it was enough to throw an artificial mask over other areas of my body that were compensating for my lack of walking; for example, using my arms to help wheel me around.  I simply did not feel the fatigue, soreness or pain in my arms that I relied on for so much: transferring me from bed to wheelchair; pushing and pulling to navigate around in my home.  I tapered off slowly, and then stopped altogether which induced physical symptoms almost unbearable to deal with.  My body was ravaged by flu-like symptoms, muscle aches and pains, sweating and chills at the same time, anxiety, yawning for no reason, and the worst: insomnia.  I soon headed to see my nutritionist who immediately placed me on a vitamin C flush. This helped rid my body of the drug's effects as well as the edema I still had in my right foot after the external fixator was removed. 

We really are in charge of our own healing; directors and conductors of our lives.  It would be easy to slip into that place of not feeling when pain has suffocated me for so long.  Yet, I know that events, traumas, illness, divorce, even death are passages of time---these experiences leave  indelible etchings on our faces--those "character lines" that some are determined to erase (with even more drugs).  I think we all endure our own tsunamis in life, at various ages, times, and stages.  There is no how to manuals or instructions to deal with the after effects of unforgiving conditions or how narcotics throw a cloak of artificial comfort over us during these difficult times.  But, hopefully, our experiences provide us with a deeper awareness about our lives; a chance to detox from the past and invite purification and cleansing that allows us the fortitude to continue on, free from pain meds' artificial comfort by our side.

Art and the Spectacle of a Foot

One of my favorite creative interests is painting.  I love figurative art.  In fact, over the last 4 years I've produced over 34 pieces, some remaining in my own personal collection and others sold to collectors.  This genre of painting, allows for an expressive landscape, which brings me to my painting, Morning Glory.

Version 1

Early last year, I was deep in the medical minutiae of figuring out why my feet were slowly losing function. Morning Glory was a piece that had symbolic significance for me; it held a process of mystification. The image looks into the heavenly light, she reflects on her life. The surrounding dense forest is a place of refuge and far away from the clinical visits that had become an accustomed environment. Her body sits atop a large boulder; a secure and steady element, something I was struggling with trying to walk. I painted her left leg and foot over the boulder--resting comfortably as she meditated (as seen in the first version of the painting).  However, the left foot was anatomically incorrect.  Several people began to point this out to me.  "Something is wrong with her foot, it doesn't look right," said my daughter.  "She is resting her foot, it's draped comfortably over the rock," I assured her.  Yet, I did not see this obvious flaw.  I blocked out any potential defect in her structure.  Apparently, I was doing this with myself, too.  I didn't want to believe there was anything wrong with my own left foot, that by now was in a brace.



Version 2

 The comments kept coming, mostly from family members that Morning Glory was not anatomically correct.  I did not see that her heel was turned upright; her foot twisted making it impossible for her to walk on it.  My own ability to walk still in question, I became angry by these critical but constructive remarks and decided to paint over the foot and liberate the image.  I covered her with hues of green, foliage from the overgrown forest--never to be seen again. The object now enveloped away from a way of seeing.  Is this where I was in the world?  The object made a spectacle; it's meaning clear to me.  Did I depict myself? 

 Her foot like my own was a spectacle among viewers.  Everywhere I traveled, the eyes starred at the unmistakable contraptions that adorned my feet.  I couldn't escape the constant glare nor could my painting be viewed without seeing the anatomical deformity. My painting was a reflection of where I was then, at that space in time.  To the spectator, the position of the foot was wrong, yet what was visible to me meant something different.  In some ways, I wish I had kept her uniqueness--the anatomical incorrect foot on the canvas.  It was the totality of possible views painted from points all around the object (and, perhaps, person) being depicted.  As the author John Berger states, “The relation between what we see and what we know is never settled.” I can’t  undo the painting, but I can see the forest through the trees of my own life now.

If you are interested in viewing some of my art, please visit my website at www.ginarathbun.com and click Gina’s Gallery.

One Foot, Two Feet Complete

Well, here I am, 8 weeks later and the final external fixator removed. The removal of the cage was two weeks earlier than the left foot at 10 weeks. These lovely fixtures have been on my legs just under 5 months.  I took off my bandages today and put on a compression sock.  The image is of both feet in compression socks; to keep the swelling down (below).  The ankles are still very sore where long screws now reside.  These screws are securing my ankles, so they won't collapse when I walk or stand (this has happened on more than one occasion).  But the ankles aren't entirely fixed in one position; they still have side to side movement.  I've included a picture of the x-ray to indicate where the screws are placed.  At the moment, after all the equipment has been removed, I'm relieved to not have it on and looking forward to recovery. I feel strangely calm.

For those that have followed this procedure, Phase 1 is complete.  There's no question that Ankle Arthorodesis is an invasive procedure; and mine was no walk in the park either (this activity I look forward to doing one day soon).  But, the external fixators allowed me to place weight on the opposite foot while the other healed.  In fact, last Tuesday when I got x-rays to confirm surgery for the following day, Dr. Bernard looked at my x-rays and the first words out of his mouth were, "You are kicking ass and taking names!"  I said, "Medically speaking, right?"  I just love it when a physician removes all the medical jargon out of the conversation.  Of course, the questions flooded my mind--the "what next" was like a neon light in my head.  "Listen, no one has known what the heck was going on with you.  This is Phase 1 and we will take it one step at a time with your rehabilitation," Dr. Bernard tells me. By Wednesday morning, I was mentally ready for its removal and ready for the next phase of my recovery. 

I have recast my recovery with a sense of heightened optimism.  Much of this attributed to the way my physician has supplanted feelings of hopelessness with trust and confidence in his care.  By releasing my old thoughts and emotions that no longer serve me, I lean on God to help pave the path for a new found freedom and prepare for new conditions.

Everything old has passed away; see, everything has become new!--Corinthians 5:17

Uncaged

I have so much to be happy about, a new life is dawning. Yet, my outcome and destination still uncertain; it doesn't diminish what lies ahead. But, truthfully, I'm worn out.  It's been a long time and the journey ahead seems overwhelming--relearning how to walk, not falling, feeling stable while standing.  At my last follow up with Dr. B, and afraid to be left alone once I go through the last surgical procedure to remove the supportive cage around my ankle, I plead with him, "You won't leave me after you uncage me, will you? I feel there is still a lot ahead; I admit, I'm scared and insecure with it all."  "No, way!" he says, convincingly.  "I want to get you up and mobile.  We will celebrate with a drink at the tavern--we'll walk up together ( referring to my husband's restaurant he runs)." My husband listening intently to our conversation says, "That's why I love you, man!  Your positive attitude is great."  My anxiousness building, I can't wait to be rid of the metal contraption around my ankle: Wednesday, March 9th, the date etched in my mind.

Confinement to one position is not pleasant or comfortable, always repositioning to find that one place where you can settle into, invite sleep for the night.  Freedom of movement is not possible when rods pierce through bone, connect to screws and fasten to bolts to ensure complete immobility. The device resembles rings and horseshoes; a game I never played nor interested in.  Yet, I have been a willing participant to fixating this medieval like torture device around both ankles, with the understanding that this procedure will reconstruct and repair my foundation.  But, I've reached my threshold for discomfort. My constitution tapped from the constant pulling and tearing of  flesh, where scabs have formed around the rods that affix themselves like barnacles on a boat.


Perhaps, my impatience is getting the best of me.  I've been known to possess very little at times.  The significance of freedom weighs heavily on my mind--freedom from devices; freedom from my wheelchair.  I can't live with the torment of being confined any longer; unable to move my feet and my legs for months, has taken its toll on me physically and mentally. The agonizing pain from the device that has secured my ankle in place keeps me captive.  I desperately want out: to move all my limbs like a synchronized swimmer; to feel uncaged like a bird taking flight. My physician agrees; it's time to take the last external fixator off; to set me free; liberate my body from the foreign objects that have caused me to tremble day and night, fighting off what doesn't belong inside me.

Dr. B examines me and says the sites "look angry," I say, "pissed".  The redness and swelling along my lower half of my legs obvious, and the slightest movement to pivot from one position to the next forces the skin to pull and stretch--an agonizing feeling.  Elevating my feet is only a temporary relief to the swelling that disfigures a once thin and narrow foot. I've felt like a spectacle in a cage; the pain kills any honor left when in public. Yet, the insecurity and uncertainty fuels my drive to capture this narrative, while repairing the psychic wounds I've endured early on.