Her name was Carol Orzel, but for those who knew her and loved her
she was the one and only Carol.
Like Picasso, Madonna, and Joan of Arc to name a few
one name, Carol, suffices in defining this unique and unforgettable woman.
Carol's legendary spirit soared far and wide.
I miss her, her smile, her verve, her determination, and her wit.
To be sure, Carol had a remarkable and challenging life
and she lived it with humor and gusto, with substance and meaning.
I was one of Carol's doctors and a cheerleader in her fan club for more than 30 years.
Carol had an extremely rare, progressive, and disabling genetic condition
known as fibrodysplasia ossificans progressiva, or FOP
that turns soft connective tissue into bone, essentially creating a second skeleton.
That extra bone that formed progressively during her life
was normal in every way except it should not have been there.
That extra bone locked her joints in place and rendered movement impossible.
Although I had read about FOP, I had never seen anyone with it until I met Carol in 1984.
Little did I know then that meeting Carol would foreshadow my life's work.
Over the years, I have met more than 900 patients with FOP from all over the world.
Carol was the very first person I met with FOP
and she started me on my journey more than 35 years ago.
From the moment I met her, she was unforgettable.
Witty, charming, and in charge.
She was so engaged in life, resilient in the face of severe disability.
Her spirit and joy were overwhelming.
FOP does not affect the mind and it certainly did not affect Carol's
or her incredible zest for life.
Carol was a real person just like every one of us, but trapped in a body that could not move.
Carol was an advocate for medical education
and she played a seminal role in educating nearly three generations of medical students
at the University of Pennsylvania. Meeting them, sharing her story on the first day of medical school
and earning a standing ovation from more than 150 students in each class year after year.
In 1992, Dr. Eileen Shore and I established a laboratory to study FOP at the University of Pennsylvania.
Carol cut the ribbon at the dedication of that laboratory and spoke that day.
There, in 2006, we discovered the gene that causes Carol's condition.
There are now three clinical trials to test promising drugs
and in the next several years there will be several more.
Carol it was one of the greatest advocates for medical research on FOP
not for herself, but for future generations.
Many years ago, CNN produced a special documentary on FOP
that featured the one and only Carol.
The documentary was made several years before I met Carol
and she shared it with me at our first visit
handing me a VCR tape and telling me to watch it.
The one line I recall throughout the years is that "Carol Orzel likes to look her very best."
And the CNN special showed her with her adaptive tools, putting on her makeup before a night on the town.
Carol saw the skeleton of Harry Eastlake in an FOP meeting in 1995
and she told me then that when her time comes, she wanted to be with Harry at the Mütter Museum
to be an inspiration for students, scientists, and doctors for ages to come
as long as her jewelry could be displayed with her skeleton.
Every year, I bring Penn medical students, postdoctoral fellows
research scientists, and visiting professors to the Mütter Museum
to see Harry's skeleton, and every time I see something new to think about.
Most of my major research questions started with Harry, and research is all about asking the right questions.
All we know about FOP today traces back to Harry, he left an incredible legacy.
Carol will now join him to continue that legacy
and I will visit them both with enormous reverence and respect.
Like Harry, Carol decided to bypass the grave for an institution of higher learning
in the heart of the city where she was born to continue the educational legacy she inspired.
Here, like Harry, Carol will achieve immortality
and will continue to educate generations of physicians and scientists as she did in life.
Carol's life was a gift to me, I will never forget her.
Her two skeletons, the one she was born with and the one she developed throughout her life
because of FOP is her gift to medicine
and with that final act of generosity, her pathway to immortality.
Harry and Carol exemplify for us that the lessons of FOP are relevant
to every condition that affects the formation of the skeleton.
The key to the closet, it turns out, is a key to the kingdom.