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It happens — a series of errorsTime to open the computerto see if there were hospital imagesperhaps a self-portrait — Yes
Two days before entering the hospitalalready ill — Spork Major wrappedher treasured Rio beach cloth around herset her camera runningturned on a Brazilian CDtransported herselfHer intention will never be known

It happens — a series of errors
Time to open the computer
to see if there were hospital images
perhaps a self-portrait — Yes

Two days before entering the hospital
already ill — Spork Major wrapped
her treasured Rio beach cloth around her
set her camera running
turned on a Brazilian CD
transported herself

Her intention will never be known

Travelling with H1N1

When something is devastating your life
say like H1N1 (Swine Flu) or Behcet’s Disease
and if you are a writer or a documentarian
you want everyone to know about it
preferably before it kills you
but if that is not possible
you want everyone to know about it
and even if it is difficult to be funny
while intubated, you will fight and fight and fight
and you will be sitting up on your bed
the fancy bed that does everything
but make your morning coffee
and even while three nurses and an orderly
with your ventilator and your two iv poles
with their six drips of medicines
are pushing you down a public hallway
like Cleopatra on her barge
to have a new naso-gastric tube
shoved down to the beginning of your small intestine
because you are terminally fucked by this disease
and you are paralyzed from the chest down
so nothing hurts anymore
and your stomach has stopped working
and you have gained 15 pounds in the last 22 days
eating nothing and saying “I told you so.  I am not
a fat person from self-indulgence. This is my disease.
You are feeding me 38 calories/hour from a kangaroo
pouch, and adding electrolytes to keep me nourished
AND I AM GAINING WEIGHT
Hello, world — take notice of this —
People do not get this way without some dire
malfunction of the body.
Do not tell me to watch my diet.
I AM SICK — FIX IT
and you can still write
you will be sending email on your way to the fluoroscope
with subject lines like
“I never thought I would write email while intubated”
and you would ask nurses about their children
and their husbands even as you explained to them
that you — fortunately, according to you —
became too ill to have children
before having any

There are signs that the worst may be over in the second wave of the swine flu pandemic.

Cases appear to have peaked nationally in mid-October and continue to decline, a trend mirrored in Buffalo and its suburbs.

Among the key indicators:

• In Western New York, emergency room visits for flulike illness have steadily decreased from a high at the end of October of 18 percent of all visits to 11.2 percent as of Nov. 21.

• Absenteeism for flulike illness in area schools has significantly dropped, as have reports of hospitalized patients with H1N1.

• Positive cases of swine flu in samples taken from patients with respiratory illness at Kaleida Health hospitals, including Women & Children’s, and at private pediatric offices have declined from 45 percent in mid- to late-October to 3 percent in late November.

However, swine flu is hardly gone.

Across the country, 32 states were still reporting widespread activity of H1N1 as of Nov. 21, a time of year when flu levels are normally much lower, according to the latest data from the federal Centers for Disease Control and Prevention.

In addition, swine flu was continuing to cause hospitalizations and deaths, especially among children. Seven people have died in Erie County since the virus arrived in the spring. Most recently, a 36-year-old North Tonawanda woman who had an underlying chronic disease died Sunday of swine flu complications.

Swine flu cases appear to be on decline/In Western New York, emergency room visits for flulike illness have dropped

By Henry L. Davis
News Medical Reporter

December 02, 2009, 12:19 AM /

Millie Niss, aka Spork Major, died from complications of the H1N1 (Swine Flu) virus today at Millard Fillmore Suburban Hospital, Williamsville, New York.  She was 36 years old.

Millie Niss, aka Spork Major, died from complications of the H1N1 (Swine Flu) virus today at Millard Fillmore Suburban Hospital, Williamsville, New York.  She was 36 years old.

Snow Drought

That’s what they are calling it here — the lack of measurable snow so far. This is now the fourth latest date in November with no measurable snow in Buffalo.   There’s rain all right.  We aren’t drying up and blowing away.

The story of no-snow is prominent here on local TV and in the paper.  Not so, the local experience with Swine Flu.

Yesterday, I met the members of a fourth family whose relative came into the ER and then to the ICU with Swine Flu a month ago.  There have been others I’ve met along the way who have transferred to other hospitals.

But here’s the point:  They are all on ventilators — still.  When they are sedated into sleep, we all despair of their lack of progress.  When they wake up, the vent, the tubes are pretty hard to bear.  They all have weeks and weeks if not months of rehabilitation ahead of them once they get off the ventilators.

But — oddly — something strange is going on with their lungs.  Perhaps it is a strange paralysis.  The day before Spork stopped writing notes in her notebook, she wrote, “When I try to breathe, I don’t know if I will inhale or exhale.  I am trying to breathe.  Nothing happens.”

Before the pneumonia and other complications, Sick Spork was shocked at the reach of this flu.  She questioned why it isn’t discussed more fully in the media.  We speculated that “the authorities” didn’t want to frighten people, because of the scarcity of the vaccine.

Here’s what we know:  Our community hospital where Sick Spork is being treated, has 20 beds in the ICU.  At one point, 16 patients were on ventilators in this hospital — which usually has approximately 4 people on ventilators.  And — most of the people on ventilators were young.

The hospital had to rent additional ventilators the week Spork landed there.  The hospital had to hire a second per diem pulmonologist to handle to intubations and extubations and tracheostomy care that was going on all around us.

In fact, the hospital had to rent the bed in which Spork has lived for the last four weeks.  This bed does everything but make your morning toast and coffee.  Besides the usual up and down stuff, it folds into a chair, it does special rotations to keep your skin healthy, its mattress inflates for easier lifting and boosting should you slide down to the foot end like a pretzel — and rolls like a dream (I am told) when Spork goes for a spin down the hospital corridors to some lab.

The bed is so sophisticated that its manual is still attached — and when administration came to see if the bed could go back to its owner since less elaborate (and presumably, less expensive) beds were now available, Spork rolled her eyes in protest, joined by the staff — and the bed was saved from removal by its unique rock and roll features.

Nothing was said locally by the media. Perhaps the story is hard to tell and still protect the patients’ privacy.

Now we are discovering that the stories were there to be read by mid-October and even earlier.  But they were easy to miss apparently.

Did you ever make a leaf print as a child? This one was made by sun and earth on the walkway to the hospital.
A maple leaf, long gone, has left its portrait here.

Did you ever make a leaf print as a child? This one was made by sun and earth on the walkway to the hospital.

A maple leaf, long gone, has left its portrait here.

Thanksgiving Dinner in the hospital dining room.
Not where you would expect to find a well-cooked meal, but we did.Not where you would expect to watch the Thanksgiving parades and football games on TV in Spork Major’s room in the ICU, but we did.
Not a peep out of Spork Major today.  Not even the usual objection to football.WNYC would have been better perhaps, but WNYC had the “Lewis and Clark Expedition” on all day.Not her cup of tea either.
We spent a typical, simple family Thanksgiving together — just the three of us.
Only — the “real life” we watched on TV this Thanksgiving looked strange  — the colors over-bright, the songs too loud, the people too quick-moving.  The gulf between the sick and temporarily-well seems wider each passing day.

Thanksgiving Dinner in the hospital dining room.

Not where you would expect to find a well-cooked meal, but we did.
Not where you would expect to watch the Thanksgiving parades and football games on TV in Spork Major’s room in the ICU, but we did.

Not a peep out of Spork Major today.  Not even the usual objection to football.
WNYC would have been better perhaps, but WNYC had the “Lewis and Clark Expedition” on all day.
Not her cup of tea either.

We spent a typical, simple family Thanksgiving together — just the three of us.

Only — the “real life” we watched on TV this Thanksgiving looked strange  — the colors over-bright, the songs too loud, the people too quick-moving.  The gulf between the sick and temporarily-well seems wider each passing day.

ICU Waiting Room.
Lot of time spent here.  Too many sad outcomes.  Not many happy outcomes.  Lots of tears shed here.

ICU Waiting Room.

Lot of time spent here.  Too many sad outcomes.  Not many happy outcomes.  Lots of tears shed here.