In honor of what would have been Dr. Kopits' 84th birthday, 17 July, I am reposting how I was blessed to become his patient and friend. He was beloved by all Little People and still missed...
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.
A few moments after Dr. McKusick and Dr. Kopits spoke, Dr, Kopits came to me and asked if he could take me on as a patient, and would I be willing to wait and see him after he finished with his other patients. WOW...like I had anywhere ELSE to go?!! "Yes!"
We had this conversation around 9:45 A.M. I was his last patient and saw him around 7:30 P.M. and absolutely did not mind. One of the very first questions he asked was, "Please tell me, HOW do you get ON your horse?!!"
He had all my records and at first, could not believe I was able to walk again following the bleed out and hematoma paralysis of my most recent spine surgery. With his nurse he spent over an hour with me. We also discussed the new spine pain I was experiencing, which turned out to be the arachnoiditis.
Dr. Kopits asked if I could remain in Baltimore for at least four weeks. Financially, I told him there was no way I possibly could. He said, "Wait a moment," and made a call.
Where Dr. Kopits was staffed at the hospital in Towson, Maryland, the hospital had a Ronald McDonald kind of house on the property just for the patients and families of Dr. Kopits. He secured a room for me.
Since neither Dr. Kopits, his nurse, or myself had eaten all day, he wanted to take us out to eat. Hours earlier I wasn't even his patient...hadn't even met him before, and with his nurse, I had been asked to join him for dinner! All because I took a step of courage.
The specially designed House I stayed in, had low sinks, toilets, bathtubs, etc. just for a little person 3' tall. It was amazing. I had to actually get on my knees when at the sink! For the first time in my entire life I felt what it was like to be "tall."
My first Saturday in Baltimore, Dr. Kopits came and watched the Preakness horse race with me. He hadn't seen it before!
I was seen by many doctors, including a renown hematologist, and underwent many tests. One in particular not only revealed the arachnoiditis, but the severity of it. And my blood counts were still out of control, necessitating many transfusions. This is when Dr. Kopits asked if I could move to Maryland. There was no doubt my physical future would be a very daunting one, and it grieved him.
He was a dear man...an incredible man, and a very gifted orthopaedic surgeon who deeply cared about all his patients and was beloved by all. Sadly, in 2003, after a courageous fight, Dr. Kopits succumbed to a brain tumor.
If I did not have the courage to take that step of a thousand miles to make it to Baltimore, I never would have known many things about my medical journey. And most of all, never would have known such an amazing doctor.
Have courage dear ones, to take that single step.
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