The journey of a thousand miles...

The journey of a thousand miles begins with a single step.    -Lao Tzu

The journey of a thousand miles actually begins with having the courage TO take that first single step.

There are approximately 200 types of dwarfism with Achondroplasia being the most common.  Almost all obviously affect the bone structure, cartilage, and connective tissues...with 4'10" the maximum amount of height.

Eighty percent of us come from families with no history of dwarfism whatsoever, as in my case.

However, the jury is still out on which type of dwarfism I have...though I certainly have some of the Achondroplasia characteristics.  In fact, how I met Dr. Kopits and became his patient, was because I had an appointment to see his colleague, the dear geneticist Dr. McKusick at Johns-Hopkins.  Though I recovered from the bleed out and paralysis during my most recent spine surgery at that time, I was having severe problems with plummeting blood counts.  My doctors were hoping if we could nail down which type of dwarfism I have, we could possibly solve the blood count issues.  Also learn if other Little People had the same problem.  

The only thing was though, I had just been in the hospital for months while learning to walk again, missed work all that time, and gone through what savings I had.  I didn't know yet how I was going to get to Baltimore, and stay for one day and two nights.  With a courageous leap of faith, I took that single step anyway, and made the arrangements needed.  The next day I found a envelope someone put under my door.  An anonymous donor provided the airline ticket and the money to cover the room near Johns-Hopkins.

Dr. Kopits was such an extraordinary doctor for Little People, he had a waiting list of one to two years.  When I scheduled my appointment for Dr. McKusick, I learned it just happened to be a day Dr. Kopits was at Johns-Hopkins seeing patients.  I was hopeful to simply get to meet him.

I flew to Baltimore, and saw Dr. McKusick early the next morning.  As soon as I saw him, he got very excited.  He immediately noticed my hands, feet, and longish extremities.  Remember, I hadn't met any other Little People yet to know I was "unique" in this way.  Besides being on the "tall" side of dwarfism, my hands and feet are average size.  I can wear regular shoes.  Many Little People cannot and my heart aches for them deeply.  

Dr. McKusick flipped out when he learned I played the piano, was an artist, and Theatre Set Designer.
And then...AND THEN...when he learned I owned and rode horses, his jaw dropped.  At that point, he suddenly got up, grabbed my hand, and began dragging me (I had to go with my hand) for his colleagues to see.  And you guessed it...one of those just happened to be Dr. Kopits.

"Steven!  Look!  Look at her hands and feet!" Dr. McKusick said.  "She plays the piano and she's an artist!  And SHE OWNS AND RIDES HORSES BAREBACK!"

Before Dr. McKusick dragged me on, I managed to say to Dr. Kopits with laughter, "I had hoped to...oops!  Gotta go!  So happy to meet youuu!"

Dear sweet Dr. McKusick...when he completed his impromptu show and tell, had me sit down in the busy corridor.  After he walked away, Dr. Kopits and he began talking together...and looking my way.

The next blog will have what happened...