Guest Post - Elizabeth Komos

I am pleased today to offer the first guest post here on the Truth About Talipes, by Elizabeth Komos, from Conifer, Colorado, US.

                Over a month ago Notumbo asked me if I would like to write a guest post for his blog.  I responded with an enthusiastic “YES!”  Little did I know writing a simple piece about living with Bilateral Club Feet would be as hard as it has proved.  Every other day for the last 30 days I have opened up my laptop, started writing- rewriting- editing-deleting-and returning to the original.  I wanted this post to be perfect, to epitomize how I feel.  Yet, I cannot do that.  I cannot put my thoughts down in a way that makes sense to me.  Why?

 Once I figured it out it seemed so obvious.  How I feel about my Club Feet changes every day, with every new experience, every conversation about the pain, the struggles, the shoes I want to buy but cannot(oh the heels I long to wear!)… However; I do have one feeling that is always present.  I am grateful for my Club Feet! 

My C.F. has framed how I perceive the world but most importantly how I perceive myself.  I learned to laugh at myself early on while not being self deprecating.  When I trip getting into an elevator and smack my head on the wall while others stare in worry and with laughter, I knew to laugh along with them.  Poor balance is a symptom of my C.F., so when I trip or friends and strangers think I am drunk in the middle of the afternoon I know how to joke about it.  I have learned to make my loss of balance while dancing appear less like an accident and more like an awesome new move.  I have embraced the nicknames people have given me (and my feet): Squibbs (from Squibby Toes), Hooves, Hunchbacks. Etc...  I have learned to accept the fact that I grunt like an Eighty Year Old man when I stand up from a sitting position at the ripe old age of 27.  I have learned to accept the fact that I cannot wear heels, and dress shoes, and instead I buy funky color tennis shoes.   Being Born with Severe Bilateral Club Feet has forced me to examine who I am at my core.  

In order to know who I am I had to figure out who my peers were.  I asked myself:  Were my peers the friends I made sharing hospital beds post 14 hour surgeries?  Were my peers those I met struggling to climb stairs in Physical Therapy rooms?  The other children and adults I waited in offices with to get casted for new Orthotics? OR were they the children I went to school with?  The ones with whom I had much less in common but with whom I spent more of my time? Inherently this question screams IDENTITY CRISIS.  Am I like my “normal” friends or my “disabled” friends?  And HOLY SCHNIKES “Am I disabled?”

                Who am I?  This is my conclusion:  I am an empathetic, compassionate, stubborn, creative, sometimes bitter 27 year old- who is living with chronic pain, CF, mobility impairments and a myriad of back problems.  I am a 27 y/o that has such poor balance people actually think I am drunk most of the time.  I am a 27 y/o who, until 5 years ago, NEVER wore shorts because my vanity was worried it would be humbled if I let people see my oddly skinny calves.  But most of all- I am a 27 y/o who learned early in life that we all have challenges to overcome.  

So…. Because of Club Feet and the challenges I was lucky enough to experience as a child I learned the true meaning of compassion, empathy, and the fundamental truth that we are all different—each with our own struggles.  Whether we need emotional, psychological, or physical help the simple truth is- at one time or another we all need fixing.  Let me relay a story before I talk more about how living with C.F. has altered how I perceive the world, others, and why exactly I AM grateful for it! 

I was six and sitting in a cramped and muggy waiting room next to my cousin who was 5 at the time.  My mother was seated next to him.  Across from us was an older woman, fifty maybe (at age 6 fifty seemed old to me) with one wooden leg.  For my cousin it was his first experience seeing someone so different than himself.  I was his cousin so my braces, and crutches, and wheelchairs were commonplace for ME to have.  But this stranger with a wooden leg was a whole new ball game for him.  He looked at me, and loudly- way too loudly, asked me “What’s wrong with her?” This question would have been reasonable had he not been laughing.   I didn’t flinch or hesitate in my response.  Actually I was quite snobby toward him, treating him like he was a baby and I was a mature adult!  “Everyone has something wrong with them, something they need to get fixed—sometimes you see it sometimes you can’t.”  

                My mother fondly recalls this story often and always remembers to tell me that in that moment she proud of me and knew that whatever came my way, I would be O.K..  Living a life that was vastly different that the kiddos I went to school with (growing up in hospitals, surgical tables, waiting rooms….) I gained strength and knowledge from all children surrounding me.  They all had a different attitude, a different prognosis, and were unlike each other in very many ways.  It was in the hospital that I made friends who were all different but similar in their fight just to be a kid.  Some of them had orthopedic problems, some Cerebral Palsy, some had cancer, some a broken arm.  No matter how different their diagnosis they all taught me the same thing:  strength comes in small packages.

Years ago while reflecting on my past and all those wonderful little souls I met, I developed my own theory of Relativity.  In Life one thing is always true- It’s all Relative! 

                Meaning, the sum of our experiences and current conditions shape how we view triumphs and defeats, i.e.- some days the fact that I want to lose weight is more challenging to me than my pain, immobility, and the fact that I will someday use a wheelchair permanently.   Then on other days the pain wins and the helplessness I feel when I let go to the truth that I will only and forever get worse.  But, the next day begins with a sunnier outlook and my biggest problem is a hangnail, or hair that won’t cooperate.  Another day it is the death of my father that takes the cake, OR that I had to give up the only job I ever loved because of my disability.  So you see…. while CF is the common denominator, I also survive the same mundane and monumental challenges as everyone else.  So it is up to me to decide how I let those relative experiences shape my outlook, my attitude, and my self-concept.  

                So how do I really feel?  Grateful.  I am grateful that I was born with Severe Bilateral Club Feet.  It could always be better or worse, but that depends on how you look at it.  So instead of seeing the grass greener on one side and brown on the other—I know it is truly about the nutrients I feed my spirit (lawn), how much I water it, and whether or not I place it in the shade or the sun.  I choose the sun!

Thank you, Elizabeth!