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Survivor: The Liana Carlan Story

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By Liana Carlan

I was born a month to the day late; in my opinion, for very good reason.  In utero, I must have subconsciously sensed that these would be the last moments of peace and calm and normality that I would ever have.  But I don't want to get ahead of myself.

My name is Liana.  I will be 33 years old this month, which makes me a Libra -- always trying to find balance, yet never thinking it's good enough when it happens.  When I finally did emerge from the womb, I was deaf and had a gaping hole in my palate. I have had 32 surgeries in my 33 years of life.  .

My first surgery took place when I was four months old to attempt to correct my hearing. They did a decent job. I can now hear reasonably well as long as I can read lips at the same time -- unless there is drinking and low lighting involved, then it becomes one of those amusing situations where I  pretend to hear what everyone is talking about.  On my first birthday, my present was surgery No. 2 to fix the cleft palate.  Happy Birthday to me. Subsequent ones have included multiple ear surgeries, surgery to reshape my palate, plastic surgery and even breast reduction surgery - the last one was done because my doctors were concerned that with a tiny body but large breasts, I would become paralyzed on my right side.

Some people would call my life tragic. Others, aware of how I have faced down my physical challenges, would call it heroic. I prefer to call it a life filled with ironies.

To cleanse my irony-filled soul, though, the time has come for me to write my story.  It's a bumpy, silly, sometimes emotional, hilarious, heart-breaking, but never boring ride. On my journey to inner peace, I know I must lay it all out on the page, confront my history and share it with you so I can finally let it go.  So here goes nothing ...

I was 12 when they labeled me.  When I say "labeled," I am referring to the ghastly diagnosis the doctors announced to me and my parents after days of diagnostic invasion of every inch of my body -- poking, prodding, x-raying, and ultimately scaring the crap out of an already sheltered, obsessed over, never let out of her parent's sight 12-year-old girl.

The question the doctors were trying to answer was a simple one: Why? Why this complex of symptoms that included cleft palate, absence of eustacian tubes, deafness, blindness, heart attack, elongated fingers and toes, multiple slipped disks in my back and multiple hairline fractures in my bones.

LIana at age 3.jpgMy parents had responded by treating me as if I were a delicate China doll that could shatter at a touch.  They carved out an existence that was, to me, cosseted and confining. They lived in fear of anything that could possibly, conceivably jeopardize my health. No swimming or bathing without ear plugs.  No skiing.  No roller skating.  No ice skating.  No sports. No running. No jump rope. No playground games.  No.  No.  No. That was my parent's favorite word.  To make matters worse, I had also been diagnosed with a severe case of Lactose Intolerance, which is a allergy to milk products.  My mother had me on a strict diet which included the most bland, boring, depressing foods available.   Plain eggs with no toast or milk for breakfast; lunches and dinners filled with steamed vegetables flavored with garlic and oil; plain, grilled meats. No desserts whatsoever.  No chocolate, no ice cream, no candy, not even potato chips because of fear of my reaction to the whey product in them.  My life, for lack of a better word, sucked.

So began the marathon of tests to find the cause of these many maladies.. I may have been only 12, but I was hell bent on being alert, informed, and educated on each and every step they were taking.  It was the only way I could stay sane.  Was it leukemia?  Then let's get 10 vials of blood.  Maybe a serious bone abnormality? Let's get a full-body scan with contrast. Maybe the doctor thinks I am a candidate for a retinal detachment?  In that case, let's order up a full eye scope. What about the heart?  Give me an echocardiogram.

Stress test, this test, that test. It was like a multi-part episode of House, except there was no witty Vicodin-addicted doctor to keep me amused, nor was there that 'A HA!' moment where Wilson trips over a cat and House figures out that what is making the patient sick has something to do with kitty litter. My least favorite tests were the ones that involved needles.  To this very day, I despise -- no, abhor -- needles of any shape and size.   And I am not ashamed to declare to the phlebotomist at my yearly checkups that there's no way in hell that she's coming near me with anything other than a butterfly needle, aka,  the Infant Needle.  I have no shame. 

At one point, I was starting to conclude that the doctors had decided I was a medical mystery.  I had all of these serious things wrong with me, but where was the connection?  What was the explanation for the multiple issues surrounding my health? (And where was Dr. House when you needed him?)

All these various maladies I suffered didn't make sense. My parents were fine.  Nobody on either side of my family had anything remotely close to my issues.  Sure, there were many relatives with glasses, some older ones with arthritis and such, but nothing compared to the range and severity of what I had.   They finally decided to stop all the rigorous testing, since they couldn't find a distinct problem causing the individual issues.  Instead, they had begun researching multi-symptom disorders in an attempt to find an answer.  That's when they came up with Stickler Syndrome.

Stickler syndrome is an inherited disorder, caused by a gene mutation that affects the formation of the connective tissue collagen. The symptoms of Stickler Syndrome can include severe near-sightedness (check); deafness (check), altered facial features (check), abnormal curvature of the spine (check) and weakness in the joints (check.). The severity of the condition can vary from patient to patient. Mine was severe, the doctor said. Deafness.  Blindness.  Heart Attack. Those were the doctor's predictions of what was going to happen to me over the upcoming years.  Bones of an 81 year old.  Hairline fractures throughout my bones.  Multiple slipped disks in my back (so that explained the random pains that felt like little trolls stabbing me with tiny knives.)  A chance of retinal detachment.  Pregnancy would never be an option because I would never be able to physically carry a baby. On top of that, if I ever did manage to get pregnant, there was a 50% chance that the condition could be passed on to my child.

Finally, the doctor delivered the piece de resistance:  "She may not make it to see the age of 20."

I had hoped that that the sum of all those tests, all the medical expertise, all the collective wisdom of my physicians would be a cure.  Instead, I got a death sentence.

Tomorrow, Part Two: "I was at school, and suddenly, I lost all of the strength in my hands, arms, and legs.  It was as if I had become a rag doll. 

 

Flag Photo: Liana at age 8.

Text Photo: Liana at age 4

 

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