It’s a little after 3:30 and I’m at Au Bon Pain in the main lobby. They name some of their items after places and things: the Newport Turkey sandwich, the Farmhouse omelette, Southwest Chicken soup. I think, given their location inside a hospital the size of Weill Cornell in New York City, they should name the items after moods of the people who have loved ones here to reflect their place within Health Care.
For example: right now I might be having the Despair Deluxe Vegetarian Salad, a small Panic Attack Chicken Noodle soup with some of those nice Parmesan Breadsticks for People Who Have Just Given Up. And of course I would wash that down with a lovely 16 ounce bottle of Yelling At The Top of My Lungs Because I’ve Had It with the Lousy Cell Service in This Place Sparkling Water.
Ebony is resting and looks as if she doesn’t have a care in the world, in spite of being fitted with an EEG to monitor her brain activity for evidence of possible seizures. I was informed by Katie, her nurse, that neither family nor friends may sleep in the room, so I took my overtired and disgruntled ass downstairs to consider something to eat.
I ended up having the Despair and a small Panic, but only had a bottle of Poland Spring to drink.
We admitted Ebony on Saturday because she has had increased difficulty swallowing and started to “pocket” her food, holding it in the corner of her cheek like a squirrel. More, by the end of the week she was unable to consume water and it would dribble slowly out of her the corner of her mouth when she turned her head.
The doctors in the ED — Emergency Department — said she was dehydrated and ran an IV of saline and one of potassium along with her regular drug cocktail, which, unfortunately for her, does not contain vodka. But it was deemed necessary to insert a feeding tube, something I knew nothing about. It is a medical line, similar to an IV line, that is inserted into your nostrils and fed (pushed) back and down your throat into your stomach. It is awful and if you ever want to really hurt someone — maybe someone who cuts you off in traffic — in my opinion, threatening to “stick a feeding tube down their fucking throat” would be a more than satisfactory means of exacting revenge than merely shooting them. If you shoot someone, they’ll (probably) die. If you stick a feeding tube down their throat they will be in great agony and then continued discomfort for as long as they were made to use it.
Ebony was in pain and winced and shrieked and tears ran down her cheeks as the Attending Resident (Resident Evil) made three attempts to succeed, first with a line that was too thick, then twice more with a thin line. I held Ebony’s head still and cried with her whispering to her that it would be okay and I loved her and we needed to do this.
I hate myself.
Having finished, Resident Evil taped the line to her nose and I asked for a mouth swab, which is a sponge on a stick that you dunk in ice water and pour in an antiseptic of some kind to cleanse the mouth. I just wanted to wet her mouth a bit because the feeling of having a tube down your throat must be excruciating. It did not escape my Catholic School upbringing that I was now like the Roman sentry who taunted Christ on the Cross, giving him a wet rag at the end of a stick to wet his lips, cruelly soaked in vinegar. Here, my Beautiful Bride-to-Be, enjoy this delicious antiseptic cleanser and know how much I love you. ❤️
The resident returned to say they had to X-ray Ebony’s stomach to make sure the tube was in right and guess what? It wasn’t. So at four-thirty in the afternoon she had to remove it because it hadn’t reached her stomach, which was no more pleasant than when it went in as it was removed coated with saliva and blood.
Her mother, who has been staying with us to help take care of Ebony, joined me in asking that Ebony be allowed to wait a day before trying this again so she got a night’s reprieve and then, in her hour of need, I had to go to work so I would manage and produce the backstage audio highlights from the 90th Academy Awards.
While at work her mother texted me to say Ebony was finally brought to a room and she was going home to sleep.
I have since returned to her room to watch her for a little bit — she is sleeping like an angel — and I will stay here or outside probably until her mother returns at Noon.
I went back and talked to the nurse, Katie, who patiently listened to me explain our journey in the last five years and smirked knowingly when I groused about the bedside manner of the attending physician from Sunday morning. I realized I was talking her ear off about Ebony — how we met, her love of heavy and extreme metal, places we’d been and things we had done together. I even showed her pictures of Ebony over our ten years together. I have been doing that a lot lately, because I no longer socialize. I don’t see my friends, really except online and in the end I can only really talk about one thing: Ebony is the Love of My Life. Yet I find myself talking to everyone from cab drivers and the Asian lady at the vegetable stand I am certain is a drug front, to security guards to Sting’s publicist about her. I do it reflexively and don’t even realize that I am doing it sometimes. It has been on my mind a lot recently: Ebony and I would have been married this year. That was sort of the plan. We got engaged in 2011 and we’re enjoying a long engagement, spending time living together and really learning about each other. When we started talking, somewhat seriously about a wedding and honeymoon, around my birthday, she started having what we later learned were auras and that summer was diagnosed with brain cancer.
At some point this morning , her doctor will join the Neuro team and check in on Ebony and her EEG. And then they will have to fit her with the feeding tube but Katie seemed to think a better trained resident would be enlisted. I will still beg her doctor to consider reasonable alternatives that might be less invasive.
Of course, you will be able to read all about this in greater detail when I finish my memoir, “Doctor, Doctor Please! My life is a UFO song and other tales about being a Heavy Metal Caregiver.”
I once interviewed Ian Astbury, frontman for The Cult and one of our favorite singers, and asked him why he hadn’t written a memoir. He said, “Because the story isn’t finished yet.” Neither is my story about Ebony. I just hope it has a happy ending.
