To the wonderful staff and professionals at the Stony Brook Hospital: “Thanks to you, lives are saved everyday. Thank you!”
The waiting room at the Nuclear Medicine section of Stony Brook Medical Center was busy on Monday morning when I arrived. My daughter Ellen was to be checked out for possible abnormality in her digestive system. This requires her fasting. She is given an egg that is made with a small amount of radiation, which she eats, and every hour they take a picture. She must be perfectly still for 60 seconds as the camera does it’s work. This is repeated an hour later, than another hour later, then finally one, more time an hour later. The whole process takes about four hours.
If you know anything about people with mental disabilities, and my daughter in particular, you know they will not follow orders. You might fool them into doing something, but then you have a fight on your hands. Ellen does things her way, no matter what the protocol is: you better follow her instructions.
Ellen is 114.6 pounds, about 5 feet tall, with spindly arms and legs. Dynamite is smaller, but doesn’t carry the explosive power of Ellen. You can at least control dynamite if you are careful. Not Ellen!
Mr. Highhopes enters the waiting room, a man about mid forties, in a white smock with mandatory serious face and pens in his pocket. He relates the procedure he will employ to get the picture.
Mr. Highhopes: “We will feed her an egg with a little radioactive material in it. This is so we can trace the path of the food to see where it goes, and how she is digesting it. We need her to lie perfectly still on a table for one minute as we shoot the picture.”
I start to laugh out loud. Mr. Highhopes is staring at me, quizzically.
Me: “You will not get any pictures from her. She will not cooperate.”
Mr. Highhopes: “Well, we could shoot her standing up.” (That thought occurred to me many times when she refused to cooperate!)
Starting to feel this uncontrollable urge to laugh, I check myself.
Me; “OK, we can TRY, but I don’t think it will work!”
Off we go to the camera room. Ellen is in a wheel chair, being pushed by a woman caretaker, a male caretaker, Mr. Highhopes and myself.
The room is cramped and now, very crowded. Someone brings Ellen an egg sandwich with the radioactive material, and we ask her to eat. She hasn’t eaten breakfast, so this should be ‘easy’.
Me; “Here Ellen, eat. Emmm, looks good Ellen!”
She shakes her head no. “Aw, come on Ellen, eat.” Again, her heads goes sideways, very vigorously.
Now she is really shaking it “no”!
“How about for Mommy?”
She opens her mouth and starts to eat.
Now we decide to liberate her from the wheel chair. The reason she is in the wheel chair is because that is the only way to control her through the hospital parking lot, in the elevators and through the hospital, protecting the visitors: staff and patients form physical destruction if they get in her way.
I coax her up and we manage to somehow worm her into the two sections of the camera. Now all we need to do is get her to face toward her right.
There is suddenly a look, which comes over my little girl. That sweet little girl we all love so much. With her big browns that look up so innocently at me, she suddenly starts looking like Iron Mike Tyson! The look seems to say: “OK, who wants it first? Which one of you turkeys wants to go down in a blaze of glory first? Or do you want to all die at once? Either way, I don’t have a preference.”
I make the first move. (I am stupid) Sweet little Ellen, 114.6 pounds of her, pushes her 200-pound father across the room! The two caretakers are holding on to each other, leaving a large yellow puddle under them and Mr. Highhopes is hastily packing up and heading toward the door. He didn’t wet his pants, but I did notice a large bulge sticking out of his behind as he ran or should I say flew past me.
Ellen knows how to say two words. The word for Mommy is: “Mumma”, and her word for happy is: “Appy.”
As we left the hospital, she looked at me, patted herself on her head and said: “Appy?”