Wednesday, March 07, 2018

Respect The Bear!

I have a photograph of Ebony that I took early Monday morning while she was sleeping. She was holding Mister Bear and facing the left side of her hospital bed where I was sitting. She has the feeding tube installed and just behind her is an array of medical equipment. The way the camera in my phone captured her face, you cannot tell if she is sleeping or squinting at me. It is a jarring picture of you have not followed her progress, such that it is, but I took it because, to me, she looks peaceful and I have been in the habit of trying to accumulate pictures of her as I try to hold on to my sanity and our precious time together while Cancer ruthlessly tries to tighten its hold on her daily. 
I was at the hospital Monday from 3 a.m. until Noon, when her mother arrived. The overnight RNs would not let me stay longer than one minute with her in the room and when I asked why, I got a curt, “That’s the rules. You can come back in the morning.” 
I started to argue that I have done it before and, more importantly, the website plainly states that, “New York Presbyterian has open visiting hours.” I was received poorly and told to come back at 7. It wasn’t worth getting into a tizzy and disturbing other patients but it was galling.
After I visited with Sleeping Beauty for a minute — kisses on the cheek and a quiet “Hello, I love you!” — I went downstairs and got a coffee. Actually, it was a coffee and a chocolate croissant because I was mad and eating my feelings. 
As I sipped my coffee,I swiped through pictures on my phone and came across a picture of Dr Josue (Ho Sway) from NY Presbyterian Queens, holding up Mister Bear three and a half hours after rescuing him from a laundry bin the day a careless aide gathered Ebony’s bedding and tossed it in the laundry chute with poor Mister Bear inside. 
I was careful and have always been careful when in the hospital, to tell everyone who comes to look after Ebony that Mister Bear is part of the family. Here at Weill Cornell there’s so many people in and out that its almost impossible to connect with all of them, like King Canute trying to hold back the tides.
When I returned to her room later, Mister Bear was face down on a chair and not with her. I was pissed.
I thought maybe if I left a note above her bed, it might help but that might not get read. This is when I thought about the photograph I took. If I could make it into a poster, with instructions, people might take note of it, however silly, and be careful with Mister Bear. There really wasn’t time to ask any of my talented artist friends so, with a little pluck, I found a site that generates Memes, made one and then sent it to FedEx Kinko’s for a quick turnaround.
I picked up the poster at Kinko’s before I visited Ebony on my way in to work. The cashier/attendant asked me about it. He was curious, he said, because he thought Ebony might be a boxer and recovering from a match. “Doesn’t she look like a fighter?” he asked a colleague as he held it up for inspection. The guy asked me about her weight class and I got the biggest kick out of it because they were serious. But more than that, I saw that picture in a brand new light. It’s not jarring at all — it shows her for whom she truly is: a fighter.
Also, I looked it up: in Women’s Boxing, given her height and weight, Ebony would be a Super Middleweight or Light Heavyweight like Laila Ali. 
Or as I already knew: a total badass. 
When I stopped in before work I was only able to spend a few minutes. She was awake and immediately touched my cheek. This makes me so happy but is absolutely heartbreaking knowing what she is going through and 1., not being able to help her, and 2., having so little time as I have to work. There is simply never enough time, but I lingered longer than I should have because she kept touching my face and I just love her so much and those moments are so special and intimate for us, I cherish them. Now that she can no longer speak, I suspect that she does, too.
Getting a poster made may seem frivolous but is is what I can do to protect her. She loves that bear and when I am not here or her Mother is not here, Mister Bear is. If she wakes up, with a picc line (Peripherally inserted central catheter), a urinary catheter and a nasogastric feeding tube all running into her while she lies prone in a strange place listening to New Age, she will look down and see Mister Bear, feel him in her hand and know that as awful as things are, she is not alone. 
It’s after 6:00 a.m. and I have been here since 3 and seen a bunch of new RNs. “You must be Mark/her fiancĂ©...” They have all seen the poster. “We’re taking good care of Ebony and Mister Bear!” They smile and smirk, but I don’t care: that bear is right where he should be against her chest and I could cry it makes me so happy. 
Ebony would not be happy to know that I am sharing a picture of her when she is so vulnerable and not looking her best but I want to celebrate her for the fighter that she is. In six months, Cancer has robbed her of her ability to speak, walk or care for herself without assistance but she is punching back hard and she is still here
Even in the state she’s in, she is stronger than I am.