Sunday, April 30, 2017

Another Bump On The Bumpy Road

last Saturday April 22nd  Earth Day
I ended up in the Emergency Room

the night before I spent an hour in bed
teeth chattering
right leg twitching with muscle pain
it might have been two hours
felt like forever
but then I fell asleep

in the morning
I felt better
but by afternoon
I was burning up
Jackie took my temperature
it was 102

We left for the hospital
Howie with Jackie and me
Andrew following behind
once there the testing
and needles began
first diagnosis-UTI
admission and off we go. . .


Snippets from a hospital stay:

it’s time for bed
11pm room 131
Bozeman Deaconess Hospital
I can’t get comfortable
my hands on the pillows
curl into balls
I can’t relax
Jackie gives me
my homeopathic anxiety drops
I am scared of the night


Dr. Herring

The first hospitalist
very attentive
his voice
as he discussed
my situation
put me to sleep
every time
he set me up
for recovery


Dr. Sauerwein

tall, confident, quirky
wearing a funny surgical hat
looking and sounding like Henry Kissinger
Bjorn Sauerwein explains to us
my bladder has been weakened
by the ALS
it can no longer
store my pee
which explains why
I have had so much trouble urinating
my urine has backed up
into my kidneys
causing an infection

he will need to see me in his office
once the infection has cleared
in the meantime
I have a new internal catheter
which immediately drained
a huge amount of urine
but no more peeing for me


CT Scan and Swallow Study

it was very difficult
to hold my breath for the CT scan
it took a lot out of me
especially after the slide board transfers

then I lay in my bed in the hall
waiting for the swallow study
broken air mattress deflating
while the anxious techs ran around
looking for yet another spare battery pack

another slide board transfer
to a chair that laid flat 
then went upright
for me to sit in front
of an x-ray machine
where I swallowed poison  
in various consistencies
in order to get a better handle
on my eating and drinking abilities


Cheri, Speech Therapist Extraordinaire
(aka Dragon Lady)

wearing a colorful
fitted lead dress
and special x-ray glasses
told me the bottom line
that I am aspirating
when I swallow
and now had the x-rays
to prove it


Dr. Sullivan

the pulmonologist with a belly
and a mustache
continuously tells me
I am doing great
on the non-invasive ventilator
he is very impressed
considering how difficult
it was for me at first

he often repeats himself
our conversations circle around
my need for a feeding tube
how strong my voice is
my ability to use the ventilator
my weakening diaphragm and lungs
my ability to survive
the procedure to install the PEG
what to do if things go south
whether to get a trach or not

he smiles a lot
talks too much
makes me anxious
but he is doing the best he can
he has a very difficult job
I am not an easy case
though I am an easy patient


The Hoyer Lift

they roll you over on the bed
put you in a canvas sack
the nursing staff all joke
they have done it
themselves in training
but I doubt they ever
got hoisted from a hospital bed
to a commode
with their bare butts
hanging out of a hole
backed up, arms useless
in the way, stiff and in pain
they kept remarking
how it was like a hammock
but it’s no backyard swing
on a relaxing Sunday afternoon



Brooke or Carly
part of my OT team
came by every day
to work the stiffness
out of my arms
sometimes they came
with Tamara, the red-shirted
head of in-patient PT
I have a good memory of Carly
stopping by with another
red-shirted PT
who worked my legs
while Carly worked my arms
soon after I got a ride in the hoyer lift
‘cuz I had to go poop


Dr. Marley

Dr. Marley listed every drug in the world
every pain killer
every pain blocker
young and knowledgeable
a typical hospitalist
who knows nothing about you
to change the subject
I asked him where he went to school
big boyish smile
Jackie gave him my blog address
he turned out ok in the end


The Nurses


my first night
gentle and strong
confident and not afraid
of this complex patient
burning with fever
she set me up in bed
with pillows
I slept on the ventilator
for three straight hours

she was my nurse again
a few days later
feeling much better
she insisted on taking me
outside for fresh air


her mother-in-law, Lois
used to work for us
Allison was in charge of my enema
covered the bed
with a hundred quilt and chuck pads
she also gave me a suppository
and had to deal with my emptying out


my night nurse
for three nights in a row
she was great at
setting me up
on my left side
perplexed by my inability to sleep
and wanting me out of pain
she offered me norco every four hours


a full time nurse
a full time hairdresser
mother of teenagers
she was my nurse one day
my case manager the next
instead of “I voted today” stickers
she thinks we should wear
“I pooped today” stickers
every time I pooped
I got a kiss


the only guy
rock solid
never assigned to me
he inserted my catheter
asking me if I could
feel things down there
when I told him yes
he numbed me up
asked me if it hurt
well it’s not pleasurable
we all laughed


awesome positive energy
night nurse for the last two nights
I didn’t sleep well either night
but no fault of hers
the first night
I had a bad reaction
to Adavan which I took  for sleep
on Dr. Marley’s recommendation
I kept saying I was lost
felt anxious, couldn’t sleep
another drug
working backwards on me
Katie massaged my feet
for over an hour
she and Jackie
bonded over my bed
sharing stories
Katie met her boyfriend
when his car broke down
in the town in Michigan
where she lived
He left for his summer job out east
but turned around an hour later
back to Katie
I don’t blame him


Dr. Popwell

Dr. Popwell was talking about
palliative care and acute hospital care
“waaa waaa waaa waaaa waaa waaa”
I was falling asleep
it was serious and well thought out
but it was time for him to stop talking
I told him
you’ve talked enough
we all burst out in laughter
then I told him I appreciated his care
he was in tears
I can tell he cares a lot about me


Our Angels

they visited me one by one
filling up our room with love
brought us enough food
to feed an army
some of them helped us
navigate and understand
the doctors’ words
marking the future
friends I hadn’t seen
in months even years
appeared with tears in their eyes
Jonell came with Peyto
who on arrival vomited
on the floor of my room
admitting physician, Dr. Gaylord
a sweet man from Texas
stopped by in his street clothes
on his way home
to check on me
remarked how my positive attitude
was key to my recovery
and my daily life with ALS
Tracy on her birthday
Gail every morning
Alex every day after school
Josh and Debby with dinner every night
Curly who is always there for me
Barbara and the Middleton family
taking buddy for the week
even getting him groomed
Rita coming by
to trim my nails
on departure day
Nettie, Dan, Taylor,
Patty, Candice, Tim
cards from Jayden and Brodie
flowers from Leslie
a super soft blanket from Rachel
Soup from Shannon
home repairs by Tim S
Louis, my oldest brother arrived
just in time to help take me home


Rabbi Ed

we texted him to come after six
he showed up at four
joining Alex, Curly and Louis
he asked me how I was doing
and then asked if I had
written my ethical will
I have not
but I told him
I want to be buried
not cremated
he wanted to know
If I wanted a traditional
Jewish burial
with the ritual of tahara
He told me about a “green” burial
where you are buried in a wicker basket
he told me that cremation
is a major cause
of greenhouse gasses
in the world

eventually he went to find Jackie
who was having an intense
conversation with Dr. Popwell
at the end of the hall
when he arrived
after a few minutes
I looked at Alex , Curly and Lou
and said
give Jackie a break
go tell the Rabbi
I’m dying



six days and nights
together in a 200 square foot room
she never left my side
need I say more


Home At Last

made it home in time
for Howie’s birthday
and the Mets Nats series
a pile of cards
I still haven’t opened
Buddy and the cat happy to see us
the clean house
made ready by Candice

it’s good to be home
but I still have ALS
my nervous system
has no patience
my useless hands
cannot tolerate touching anything
plastic or metal
nerve pain in my right wrist
my shoulders, biceps and triceps
still tight
the gabapentin helps
but makes me groggy
intestines still angry
still it’s good to be home

Tracy sent us a photo
of a local family
also touched by ALS
who were in California
at a fundraising walk
the large family
were holding signs
one of them read
we love Marky Moose
made by Aaron
our sweet produce manager
signed by staff, vendors, customers
carried to California
by Whitney

seventeen years ago
we were at Bozeman Deaconess Hospital
on April 28th waiting to get a medical induction
it was a busy day
in the under renovation
maternity ward
we had to wait
until 11:30 pm
before Dr. Wong
could induce Jackie
Grandma Peggy in charge of Andrew
Tracy in charge of Micah
four hours later
we all met Howie
now he is taller than me
helps take care of me
he is a young man
spent the week
home alone
getting to school on time
studying for AP exams and the ACT
we celebrated his birthday
a fajita bar
and chocolate moose cake
prepared with love
by Lindsie, Jamie
and our CK crew
Tracy and the kids
Wades and Schumachers
Ethan Schumacher
born just a few days after Howie
they had their first sleepover at BDH

I have spent
most of my first few days at home
writing this with Jackie
but so necessary
for my well-being
the bumpy road continues


Saturday, April 22, 2017

A New York Poem from Years Ago

My friend Maddy published a poem of mine on her website.

Here is the link below:

Friday, April 21, 2017

Tug of War

wednesday night I was up
at 3 a.m.
I had been sleeping
for four minutes
I woke up
disoriented and confused

I am taking this drug
It makes me groggy

Candice was in a chair
next to my bed
Jackie asleep
in her bed
next to mine

I was moaning loudly
Jackie woke up
I was trying to figure out
what I was supposed to do

in my mind
were the letters
C and S

I was so out of it
I wanted to move my body
but didn’t know how

I realized there were two things
I could do with my body
I could either lie there
my arms spread out
or I could pee

I kept thinking
I was supposed to
be doing something else

Jackie and Candice
were trying to bring me back
I was telling them
they were asking me
to do things I could no longer do
I was being pulled
to the other side

they asked me questions
about the day before
I knew the answers
I did not remember
falling asleep
I did not remember
using the ventilator

there was a noise in the kitchen
Andrew was getting a glass of water
Candice brought him into the room
the three of them
sat me on the side of the bed
for a reset

they took me to the bathroom
then got me back into bed
we joked and laughed
Candice went to sleep
Andrew went back to bed
leaving Jackie and me alone

I looked at Jackie who was sitting
next to me on the side of the bed
I said, kiss me
we kissed slowly
over and over again

I told her
I choose celebration over suffering

Wednesday, April 19, 2017

Photos from the last few days

Yesterday, Andrew and Howie set me up on the couch in front of the Mets game. I was so comfortable I fell asleep. The Mets disappointed me for the fourth game in a row losing on the last at bat after leading most of the game. The boys set me up on the couch again this evening, Mets are winning in the bottom of the seventh 3-2. Hopefully they'll hold on to win this one.

Chas and Gail came over yesterday. Gail read some Billy Collins poetry.  Billy Collins is a great writer and the stories Chas and Gayle told in-between were really fun to hear.

Skye and Lauren came by while I was outside on a walk and got their 
puppies out of their car to give me kisses. 

On Easter Sunday Acra came by to say hello. 

We took a walk in Town Center and ended up at the hummocks trail. Afterwards we hung out on the patio at the Hungry Moose and lots of employees came out to say hi.

After a long day I go on the ventilator and Howie massages my feet. 

Monday, April 17, 2017

The View Out My Window

The view out my window

this is what I look at
when I lay down in my power chair
lately I've seen a lot of hawks
a lot of robins
fat and red breasted
hanging out on the branches of the trees in our yard

when I ventilate
which I do more and more each day
I look at just the sky
yesterday the clouds looked like flying saucers
it was so warm out
we had the patio door open
a mountain bluebird almost flew into the house

today the snow dumped
all I saw was white

Friday, April 14, 2017

Soul Shine

on Monday morning Jaci came over
to give me a haircut
she used to cut my father’s hair

as her razor buzzed
she stopped and looked at me
bright-eyed and said
I’ve been seeing your parents
do you want to hear about it?

your mom is sitting patiently in a chair
your dad is pacing back and forth
your mom is telling him to stay calm
he is calling for you

Jaci also talked to me about
how she sees me physically waking up from sleep
she holds her arms akimbo
mimicks precisely
the muscle tension I experience
each time I wake
how would she know that?

she says when I sleep
my soul is hovering over my body
when it reenters it startles me

she talks to me more about my parents
Jaci didn’t know my mother
I show her two photos
one when my mother was sixteen
the other four months before she died
that’s the Pearl
she sees with my dad

I ask Jaci if my parents know about me
of course they do

Jaci tells me my soul
signed up for this life
who knows why

she talks to me about surrender

how I know so many people
who love and support me

Jaci finishes cutting my hair
tweezes a few rogue forehead strands
and calls it good


On Monday night while I was asleep
I heard my father calling for me
Mawkie Mawkie Mawkie
he was very far away


Tuesday I saw my therapist Andy
I told him about my haircut
I told him about my father calling for me

he asked me when my mother died
eighteen years ago
your father just died
your mother has been on the other side
for a long time

I spoke to Andy
about my violent wake-ups
whether I am asleep for an hour
or two minutes
I wake up with my arm and shoulder
muscles so tense
my hands tightly curled

when I am sleeping
I am told my body is loose and limp
Andy says my soul is leaving my body
my body fears
my soul is getting too far away

he tells me I should focus
on staying close


that night
I slept a lot
I woke up a few times
very disoriented
I had been trying to answer
some very difficult questions
I knew the answers
but was afraid of them

I woke up
muscles tense
arms akimbo
and slowly realized
where I was
in bed
in the middle of the night
my caregiver Candice nearby

I talked to Candice
my thoughts all jumbled
I couldn’t remember the questions
this happened three times


Wednesday I went to the dentist
I fell asleep in the chair
as michelle scraped and picked at my teeth

Later I had a session with Sara
I fell asleep on the table four times
I had three gentle wake-ups
and one startled and tense

After the massage Liz was here
ready to write
she brought me a beautiful card
from her daughter, Maeve

it said
you have soul shine