Wednesday, August 26, 2009.
What a day. You couldn’t make this shit up. I went to the hospital again this morning Now my love has blue feet and hands. I walked into the room and was immediately cold to the bone. For the first time in weeks I was feeling cold in the hospital. I shuddered and shivered, unable to shake the bone deep cold I was experiencing. Something in the pit of my stomach said this was a horrible precursor. Now my newly blue man, Lance was in trouble. Big trouble.

After his heart surgery the doctors had put him on a medication which...could have the side-affect of making his skin turn blue. Apparently if you spend a lot of time in the sun, you could turn blue. Not long after they assured us it was extremely rare, I noted and DVR Oprah and her show on The Real Blue Man. Lance and I watched when he came home. It was a fear of Lances...becoming a Blue Man. He was so proud of his tan.
I was then “abandoned” by brother-in-law and his wife. I know they were not abandoning me, it was Chris’s first time back after her drive to NY with their daughter, she was beginning her second year at Vassar. They visited with Lance, then they left, together; Chris was pushing Scott’s wheelchair now. A last ritualistic thing, which for me had been an intimate connection to my own husband, the man who was almost a mirror image of my own. I know intellectually they needed to be together, but for two weeks it had been Scott, me and Lance in this exquisitely painful life-drama. I was feeling more alone than I ever had.
I left shortly after them to go out to eat, but found myself in the parking lot of my hairdresser, hoping for a chair massage from his massage gal, but got a big hug from him instead and then an awkward feeling since the massage girl was herself getting one by some stoner. Then his next client came in...big, strange girl with multicolored dreads. I was reading a story in a magazine about men who live with women with disabilities...their perspective is interesting, but not enough to get much past the image of an empty wheelchair in a closet. Creepily accurate. I had to leave. I was still chilled to the bone too...my teeth began to chatter. Why couldn’t I shake this?
I was suddenly hungry so went to a Wendys, for some beef...sat in the parking lot windows down, sunroof open, radio on the 70’s, strangely soothing to hear songs from decades ago, when I was carefree...or it seemed that way in contrast. Then I drove around, trying to decide where to go, back for a massage, to the hospital or home? I drove around in circles for five minutes, finally deciding to go back to Lance’s bedside the hospital.
His doc was busy with emergencies...they want me to talk to Fred, the hated f”ing social worker, or behind door number two; the Pallative team. Great choices. So I talk to the nurse who gives me the real skinny; Lance is close to dying. I appreciate her sensitively and confirming what my gut was telling me.
I want to go home now. I need to think. As I walk to my car I see a black crow walk cross my path. I call Scott from the parking lot to say we need to talk about this.
“I want Lance to have some dignity, what I see is a man who is lost to me, beneath the terribly swollen arms, the blue fingers, the purple feet, blood on his nose..eyes half open, tubes, tubes and more tubes....” I trail off in a collapsing mass of heaving, sobbing realizations. I’m inconsolable. The words from one of the doctor ricochet around in my head with a blinding speed, "We might have to amputate his toes."
"NO WAY" my brain screams to nobody"...how could he wear his velvet evening slippers with the red devils embroidered on them on New Year's Eve?" I refuse to let them do this.
Lance would not want this. I am sure. I would not want this for me. I drive home, crying, angry. I stop to pick up two days of my mail...I am sorting the few bits of mail sitting in my car. A bill from our health insurance, an envelope addressed to me offering me the opportunity to get pre-paid cremation, and something for my son from the Public Defender’s office. I guess today I won’t be notified I’ve hit some sort of foreign lottery I never entered. Instead I sit in my car for an hour, sobbing.
When I finally go into our bedroom, emptier than ever, I speak on the phone for hours. It relieves the extreme loneliness of this empty house...but I would not want to be anywhere else or...with anyone. The thought of having anyone here with me makes me more frightened than being alone. Thankfully I am a loner.
Finally at 7:30 p.m. I call the hospital, “This is Mrs. S, I am calling to speak with my husband’s nurse.”
”One moment...” I wait for her to pick up the phone. “...Jen is busy, could you call back in 10 min.?”
“Yes.” But, never has this happened in the two weeks he’s been in CCU. I go to the kitchen and eat my dinner. I ate some leftover pork roast, some boiled potatoes, green beans from my garden, freshly made salsa, a half of an avocado, some fresh sliced pear and part of a beer. I was ravenous.
While eating I am listening to the music of the 70’s...something to remind me of the times when we met. Here are the songs I heard, in the order I heard them:
More Than a Woman
Stormy End
Come and Get Your Love
Gypsy Man
When a Man Loves a Woman
Carefree Highway
(Our Love) Don’t Throw it All Away
I cried.
I call back ICU...again they ask me to call back in 10 min. I do, and am told they can’t find her, but will have her call me.
The phone rings shortly and it is Jen...”Mrs. S”
“Yes. How is my husband?”
“Has anyone told you the latest developments?”
“Huh? What latest developments?”
“A test we submitted of your husband’s sputum about a week ago came back showing influenza A.”
“The flu? What kind is Type A?”
“We suspect it might be Swine Flu.”
THUD. (Which is safe to do laying in bed.)
“We are going to try and get this confirmed though.”
“Well...what about us? We have been exposed for weeks?”
“Once it is confirmed he will be in isolation. Now you will have to wear a gown, gloves and a mask to see him, and his door has been closed and....”
I want to run. All I can think about is the fact my sister-in-law was in the room today, leaving to babysit her year old grandchild. I have to call them and it is ten p.m.
They are still out to dinner, the din of the restaurant is audible in the background on his iPhone.
“I’m sorry Scott...I just reached the night nurse....”
The nightmare continues.


Salon.com
Comments
Prayers continue.
rated
I've always wondered why it is not considered "best standard practice" for all visitors and staff in ICUs to wear masks, gowns and gloves. Not only for their own protection from pathogens, but to protect the patient from whatever contaminants or "bugs" they may transfer to the gravely ill individual.
Love you, girl.
Love you Sis.
((((((Sheila)))))))
What to say? Warm hug will have to do.
xoxoxo,
I feel your pain in my heart. You are a sweet and precious soul.
Words are inadequete. Endure and perservere. But then again, you've made a career of that. Thanks for sharing this excruciating experience.
I wish I were as brave as you on lifes road.
Bless you for seeing this writing through. I do hope it helps. Hugs.
Music and memories - we've been there, done that and hopefully will continue to do so. Keep writing. keep drawing, keep doing anything that helps you through.
And I'll be here...always
I feel as if I know you Sheila, and through you Lance, though we have never met. Your romance was grand and you were very fortunate to have found each other. The two of you lived a life and shared experiences most people only dream of, seems only fair when your time together is colored by the spectre of a chronic, debilitating illness such as what Lance suffered from.
You painted a picture of Lance for me, a brilliant and successful, fun loving man with an innate sense of dignity. It must have been a hard thing for him to relinquish his independence bit by bit as his disease progressed, but having you by his side, his champion, surely made it easier to bear.
Lastly, your eloquence in expressing your feelings, is no doubt cathartic, but it is also a gift to us all. Most of us will likely go through the loss of a loved one and many of us will need to step up and be an advocate for our loved one when they can no longer communicate their wishes. You stepped up Sheila, you are a rock, a loving, weeping rock. Hugs and kisses, take a road trip and come visit the PNW.
(((Hugs))) and besos, corazón.
Marcela
All my heart and sincere prayers.
Rated.