Friday, November 11, 2011

Lurch. Herman Munster. Andre the Giant ... and me

Somewhere during the discovery process, the researching of medical journals and websites trying to make sense of a strange list of symptoms, the diagnosing of myself with the rare disease, acromegaly, I googled "Acromegaly" in Google Images.

Go ahead... I'll wait... you know you're curious...

Some of the first photos are of Andre the Giant, Fred Gwynn (Herman Munster), Carel Struyken (Lurch), and Richard Kiel (Jaws from the James Bond movies and Mr. Larson in Happy Gilmore), all of whom have/had acromegaly.  There was also an unfamiliar woman I didn't recognize who kept appearing.

I later learned that her name was Mary Ann Bevan, and she, too, suffered from acromegaly.  After her husbands death in 1914, she sought a way to earn a living to support herself and her four children.  She entered, and won, a "ugly woman" contest and was, as a result, hired by Coney Island and Ringling Bros. as a sideshow performer until her death in 1933.  To this day she is known and remembered as "The Ugliest Woman in the World".

One modern telling of Bevan's story quotes this,
"The reason she had this ugly appearance is because she had Acromegaly, a disease making you grow rapidly."
As a woman on the cusp of being officially diagnosed with such a rare disease as this, that is not a comforting statement.  It is also a bit humbling to be in such company, and to be able to relate to, and to empathize with, other "freaks of nature".

By the time I had surgery, I felt like Fiona (the green ogre from the Shrek films).  My face had grown so swollen I could see my cheeks and nose.  The day of surgery came and I spent a week on the neuro. floor of the hospital.  Somehow, patients and nurses would find their way to my room.

One lady in particular, a patient that the doctors wanted discharged because they could find nothing wrong with her, even though she was convinced she was dying, was inspecting me before I had even woken from the anesthesia, or rather, what felt like a drug induced coma.  She wanted every detail of my bizarre illness.

I'm not sure I knew my name at that moment, and I couldn't speak well through the tubes and the packing in my nostrils, but she was convinced that her daughter must have had what I had.  She came close to examine my face as I lay there.  She asked to see my feet.  I didn't have the energy to send her away (nor did I have the energy (or the desire) to remove the blanket and show her my feet!).  She asked if my brain still worked.  I tried not to laugh, because it hurt as I said, "I hope so!".

It was the circus.  I was the sideshow.  If I had ever wondered what it was like to be "that person", I wonder no more.

I've never been high maintenance.  I'm more  tom-boy than  girly-girl.  Vanity has never been my thing.  How thankful I am, and how thankful that God looks on the heart more than on the outward appearance.
But the LORD said to Samuel, “Do not look on his appearance or on the height of his stature, because I have rejected him. For the LORD sees not as man sees: man looks on the outward appearance, but the LORD looks on the heart.”
(1 Samuel 16:7 ESV)
Isn't that what matters most?  The heart? 
If we are to do all things in Jesus' name,  giving thanks to God the father through Him, then I assumed I had better put more effort into the condition of my heart than the size of my shoes.  I needed to learn to be thankful for the gift of illness.   
I needed to learn to give thanks in all circumstances, this one included.  To learn, again, to trust the Lord.  To learn, in case I didn't know already, that my identity is in Christ and not in my physical condition, not in my outward appearance, or in what others thought of me.
 There is no greater mercy that I know of on earth than good health except it be sickness; and that has often been a greater mercy to me than health…
It is a good thing to be without a trouble; but it is a better thing to have a trouble, and know how to get grace enough to bear it.” ~Spurgeon
I don't yet know why God allowed for me to have this tumor, this ugly disease.  I know not why God chose to heal me.  The latter of which perplexes me more.

The tumor is gone, the disease is gone.

The effects of the disease remain, many of them irreversible, and will likely always stay and serve as a reminder of the year I had the excuse, "I have a brain tumor" for every dumb thing I said and did, but they will serve an even greater purpose.

The consequences of the disease are a constant reminder of the healing power of Christ, of his grace and mercy.

They are a reminder of what could have been, and perhaps more importantly, a reminder of what was, what is, and what should be.  They are a reminder of what is to come, as we will one day be made new.

Lastly, they are a reminder that I am one-in-a-million.  Just 3-4 people per million population are diagnosed each year with acromegaly.  Fewer than that are "biochemically cured" each year.

...Therefore, I'll assume that truly does make me one in a million.

Charm is deceptive, and beauty is fleeting 
but a woman who fears the LORD is to be praised.
(Proverbs 31:30)


Elysa Henegar said...

What a beautiful, encouraging, challenging testimony! This truly touched me and reminded me of the best perspective. Thanks for sharing your heart!

Anonymous said...

From reading your blog in recent months I have learned how beautiful you are! You have a calm, gentle and God-honoring spirit that shows through your words. Thank you for your honesty and encouragement. Erica


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