It is Halloween.
This was one of our favorite holidays when Jane was alive. She loved handing out candy. And every costume got an, “oh so cute,” “very scary” or “you make that look good.”
She would carve ornate pumpkin designs, create novel tombstones for the yard, and don the tall black witch hat we found years ago. Some years we would hide a tape player behind the bushes and run tapes of spooky sound effects.
We entertained hundreds of kids and their parents some years.
But last year the swelling in her legs was so bad she could not get up and down the stairs to the door. Instead she sat in the window and watched the ghosts, goblins, witches, pirates and aliens running up and down the street looking for sugar-filled loot. I sat on the stairs and handed out the candy. Earlier in the day I had set up the pumpkin lights and the boneyard and the small headstones filled with their bad puns.
We both knew her health was failing–that this might well be the last time we shared this holiday. I fought back tears between customers. When I came up the stairs at one point it was clear she had been doing the same.
In 12 days, the call would come to go in for heart surgery. They would replace the two valves in the right side of her heart that the excess serotonin had eaten away. The operation would take ten hours
But the next morning she woke up strong and optimistic. Within 48 hours they would be talking about sending her upstairs to the step-down unit.
In less than a month, she would be gone–killed by a disease no one has heard of–except for those who have it, their families, and a handful of medical professionals who have made it their cause.
I dug out the artificial pumpkins we put in the front window each year this weekend. I found the Halloween signs and put them up, too. But the tombstones and the boneyard just didn’t feel right this year. And I am trying to greet the little trick-or-treaters with the proper spirit and phrase-work when they come to the door. But, honestly, my heart is not in it.
Instead, I fight off the tears. The trick-or-treaters will not understand them. This is their night–and I will not spoil it for them.
Instead, I think about the patients, doctors, and others I have read about the last two weeks as we prepare to release the package of stories for newspapers and other print media on NETs. I think about their struggles and their desires for another Halloween, another Thanksgiving, another Christmas, another New Year’s, another Valentine’s Day, another Easter, another summer, another fall for themselves or the patients they serve.
And I think about the patients who don’t know what they have yet–who have been misdiagnosed–or not diagnosed at all. And I think about how important it is that we get the word out about the symptoms of this disease so that when a doctor sees IBS he or she knows to keep checking until they find the cause of those symptoms–and knows that one of the first things to check for is NET.
Ninety-five children have come to the door so far tonight. It is about 7:20. I will see another 25-30 before the night is out if things run true to form. I can hear the music wafting over from my neighbor’s heavily decorated yard. I’ve heard The Monster Mash, the themes from The Addams Family and Ghostbusters, and all the other semi-spooky tunes in the lexicon. Maybe a year from now I will again be able to get in the real spirit of the thing.
But for now–tonight–I am fighting horses disguised as zebras. And those creatures are far more scary than any costume a child can wear to my door.
