What Our Friends Don't See

1/10/17

What Our Friends Don’t See

I just got out of bed

I’m stretching my calves

then doing other stretches

precariously holding on to the top of the tall dresser

there is a crash from the kitchen

Howie opened a cupboard

and my coffee mug

fell out and onto

a favorite ceramic bowl

breaking them both

Jackie starts crying and screams,

this is what sets me off

we have other people in our house helping us

they put things in the wrong places

they fall out and break

then there’s glass on the floor

I’ll cut my foot

I’m trying to make Howie breakfast

he’s late for school again

now the sink disposal is going to break

Barbara stops by to drop off my computer

I listen to them talk, laugh and cry

I’m on the floor of our bedroom on my yoga mat

doing my morning floor exercises

thinking to myself,

usually I tell them where everything goes

but yesterday I went to the bathroom

while Gail did dishes

I do a mountain pose on my back

arms stretched overhead, feet straight

head tilted back

it feels good and safe

Barbara leaves taking Buddy

we have appointments in Bozeman all day

I do my floor routine

end with shavassana

then roll over and try to get up

I struggle to get on all fours

the yoga mat is too sticky

I forgot to push it out of the way

I can’t get up on all fours

I roll over onto my back

Jackie wants to help me

I’m out of breath

I say to her,

this is what our friends don’t see

she rolls up my yoga mat

and says, but they read about it

I roll onto my stomach

get up on my elbows

and with all my strength

manage my way onto all fours

I lean on the seat of my walker

propped up against Jackie’s desk

slowly, one bent foot, one bent leg,

one bent arm, at a time

I lift myself up

grab the handles of the walker

and stand up

The Explosion

The Explosion

we are all in the t.v. room

watching the Lions – Seahawks playoff game

dinner, a bowl of  chicken curry, on our laps

suddenly we hear a loud commotion

like the annoying buzz of Howie’s new drone

combined with the sound of the blender

making my morning coconut oil smoothie

things crashing everywhere

we all look at each other

we are all there in the room, even the dog

what the heck

suddenly a jar of pills flies by the open doorway

a jar from a closed cupboard ten yards away

everyone gets up, but me – I can’t

our cat has opened the cupboard

behind my spot at the kitchen table somehow

he has hooked my paper bag of performance enhancing drugs

around his neck and thrown my pill jars

eleven in all, plastic and glass, all over the great room

Howie pursues the cat

as he scurries down the stairs

dives to tackle, but misses

then finds the cat

under his bed

the torn bag still hooked around his neck

later as I walk around the house I find

some random tiny vitamin D pills on the floor

the only jar that the cat got open

trying to help me as only a cat can

Shabbat With Friends

Shabbat with friends

Jackie stayed home today with a bad cold.

Tracy came over, helped me with paperwork, my pills and made me lunch. She helped me fill out an ALS questionnaire for a physical therapy appointment. It had very specific questions that showed knowledge of ALS.  I burst into tears into Tracy’s arms at the question regarding ability to move bedding.

Tracy left at about 2:15 and I lied down in bed for an hour.

Amy from the bakery came over for a visit around 3:30 and we talked business, life and family. It was such a hard holiday season for everyone.

When Amy left, I lied down again. Josh came by with Tony, the plumber to look at redoing our shower and our toilet. That one step in and out is getting harder every day. I got out of bed and joined the discussion. They came up with a plan and it’s all going to get done while I’m in Florida. Josh brought some ice cream because he was staying for dinner!  Debby and Julianna were coming up with Gail, Alex Anna, and Laila. They all showed up at around 5:30.

And the fun began. First with Josh and Alex trying to change a lightbulb over my bed. As Josh took the bulb out it shattered all over the bed! A picture is worth a thousand words….

Gail brought dinner, the table was set, we all sat down for such an unbelievably heart warming meal filled with love and laughter. We lit the Shabbat candles, drank wine, broke bread and sang all the Shabbat prayers. I couldn’t resist the casa emma olive oil we brought back from Italy nor the bread and challah from Wild Crumb and so I too broke bread, having my first bread in probably two months.

We went around the table and told each other our highlight of the week. Mine was our sweet family New Year’s Eve dinner. Micah said his highlight was Jackie coming home from work and asking him what’s for dinner, since he’s been making many of our meals of late. Many said it was the Shabbat dinner at hand. We ate a delicious elk and beef stew and sat around and told stories. Julianna goes to Barnard, so I was telling stories of my Columbia College days, my hanging around Barnard days…

I’ll let the photos tell the rest…

Not Every Day Has To Be A Strong Day

Tuesday

30 degrees below outside

a high of 2

ugh.

town day

woke up so weak

legs heavy, arms sore

maybe from session with Sara day before

maybe from all the computer work

maybe from saying goodbye to Andrew

maybe the bitter cold

Jackie taking me to town

but running around all morning

I lay down in bed

and wait for her to get back

she’s running late so I manage my way

with my walking sticks

to the bathroom

and somehow get my jeans on

so I’m more ready

when she comes

back to get me

I sit on the side of the bed

and wait for her

when she arrives there are some guys

working on the threshold to the garage

she puts on my shoes and coat

somehow I manage with my walking sticks

and get in the car

2 stops for me

Jackie with an appointment in between

first stop Price Rite Drugs

to look at wheel chairs and walkers

the owner meets me at the door with a wheelchair

I am so cold from the 15 feet walk to the door

snow and ice everywhere

the place is under renovation

rugs and carpets everywhere

walking hazards for me

walkers and wheelchairs lined up against a wall

boxes of other medical supplies along the other wall

he wheels me to the power wheel chairs

and we start talking about my needs, my issues

his experience with ALS

I’m not steady with my sticks

I need a walker, but which one

I need a lightweight wheelchair for the car

I need a power wheelchair for life –

he tells us his first patient with ALS was from Big Sky

years ago, was bed ridden, got him a power wheelchair

and he lived 4 more years

the power wheel chairs turn you into a bionic man

they twirl, they lift, they turn, they go fast

all with a joystick, fiber-optics, they recline

they become your body

I kept myself together, tried out a couple of walkers

slowly pushing with the brakes engaged

people coming in and out flew by me

even at a store for handicapped people

the world flew by me

our friend Gail met us there to help take me to my next appointment

she joined in on the conversation

I asked him about a cushion since I sit so much

and he looked at us, yes , you don’t want to get butt sores

have they told you that, you should be checking

Jackie and I looked at him, they haven’t told us anything

there is no they

the owner said he would come to our house and evaluate

he has a portable ramp he can give us,

he can bring up choices of wheelchairs, walkers, whatever else

by now I was completely overwhelmed

I needed to pee, Jackie helped me into their bathroom

I was so unsteady on my feet

we left with nothing

Jackie, Gail and the owner helped me into Gail’s car

to take me to my acupuncture appointment

Jackie had an appointment of her own

and would be picking me up after acupuncture

as soon as I was alone with Gail I burst into tears

it’s all so crazy, I still don’t believe it’s true

it sucks, it’s so scary, tears streamed down my face

I could hardly talk

Gail had some lunch for me,

a salad and some chicken in a box from the co-op

but I wasn’t  hungry

I was upset

I couldn’t use the small white plastic fork

I gnawed on the chicken leg for a little nourishment

but I couldn’t eat

my acupuncture appointment was in ten minutes

when we got there Lauren was behind schedule

so Gail and I sat in the car

when Lauren was ready they would send someone out to get me

Gail and I talked, Mark if there is anything I can do

if I could make this go away, I would

I don’t believe this is happening to you

Megan came out to help get me in

How are you doing? she asked

I choked up

That’s O.K. she said, I get it.

ever so slowly I got out of the car and walked with my sticks

over the ice and snow

over the cracks in the sidewalk

over the mats and the threshold

into the office and then into Lauren’s room

I made it.

Lauren asked me how I was doing

and I cried,

feeling very weak, I told her

about my earlier appointment

I’ve had a lot of falls

so we are trying to figure it out

the sticks are not stable enough

I’m doing all this anti-inflammatory stuff

but I’m going around inflaming myself

we talked about the holidays

the holidays are stressful I said

it was great to have the family together

but the store was so busy,

I go in for only 3 hours per week

and it’s still unbelievably stressful

it’s too much on Jackie

it was 2 boys working and 1 with me

she took my pulses and we decided to work from the chair

I asked her to take off my shoes

and she took off my socks as well

we looked at my feet – they looked like feet

not sausages, we laughed

then the needles, one in each wrist near my pulse

one in each ear

some in my calves and ankles

and a bunch in my head

the ones in my head were a little sharper than usual

she said she was going a little deeper this time

she had me lift my thighs and wiggled the needles at the same time

I was surprised at the lift I was getting

she left me alone for 5 minutes

and I sat there, a tear dripping down my cheek

I focused on my breathing and relaxed

after taking out all the needles

she helped get my shoes and coats back on

then getting up from the chair was a bit of an ordeal

she moved furniture around to give me something to lean on

and helped lift me up

she escorted me out as I walked with my sticks

I was beat, feet so heavy, my head ached, she had worked me

at the front desk they had my phone, water bottle, food

Jackie had just texted she was on her way

I picked up a bunch of vitamins and paid

Lauren and Jackie escorted me to the car

walking with the sticks – it was 0 degrees out

once in the car I closed the door

when Jackie got in I burst into tears again

I’m so scared, I bawled, those wheelchairs

Jackie said, you know what that card Carmen sent said,

not everyday has to be a strong day

Yes, I cried

She told me that she visited with Cece and her parents

and they had given her a walker,

Janet never used it – it wasn’t right for her

so they gave it to me to try

that’s great I said, otherwise I was going to suggest

we go back and buy one

Let’s go home

Happy New Year!

New Year’s Eve, the 8^th night of Hanukkah

After my morning routine

I was walking to my spot at the table

when Buddy cut in front of me

and sent me to the floor

not the best way to start the day

but I brushed it off

only an armpit bruise

always my left side

got up from the floor

and sat at the table

for a family breakfast

then it was off to work

arriving at the store at noon

John and Laura happened to be in the parking lot

on their way to ski

and they helped manipulate me from the car

to my corner seat in the dining area

where I visited with random customers

watched the crazy busyness of the store

visited with staff, commending them on their hard work

going over some details, trying to stay in the game

I asked them to clean off tables

as deli dining customers came and went

I watched the delivery drivers bring in handtruck

after handtruck full of beer and wine

I watched Quin try to help get it all put away

in a somewhat organized fashion

almost an impossible task

I watched as customers shopped the wine section

my pride and joy

I sat in the corner out of the way and watched

the store spinning before my eyes

after an hour or so

during a slight lull

Ben helped me up slowly and carefully

I found my balance

Ben helped clear

a path to the rest room for me

he did some work on the back computer

with my direction

on the way back to my corner

things were getting crazy

and it was a little scary

through all the narrow aisle

between the deli counter, the stacks of xmas candy,

the wine stacks, the card racks

the tower of beer, the lines of customers at the registers

the tables full of customers

I created a monster

but I got back safely to my corner

and continued my watching and visiting

at around 3 pm there was a sudden rush

of visitors and the store was swirling with activity

I had not seen Jackie once since we arrived

I asked Marla who was visiting with me to find her

other friends sat down with me

I was overhwelmed

my voice was very tired

my feet were very cold

I needed to pee again

I was hungry

I needed to go home

so Ben, Jackie, Marla, Howard and Elise

all escorted me to the car

I was shaky, unstable, cold

they got me into the car

I was almost in tears

Jackie took me home, Marla followed

at home, first the bathroom

then bed

Marla prepared me some lunch

and prepped our New Year’s Eve dinner

I rested and read in bed

and answered texts

and called the mountain store

to help try to fix a cash register printer

Howie got home

at 5:11 pm

Jackie sent me a text about the moon:

the moon is a tiny sliver

a new moon and a new year

I love you so much

we will have a great year ahead

we will fill it with so much love and fun.

(lots of emogis 2017 hearts)

I texted her back:

Love you too. I’ll go look outside

Howie just got home.

I’m gonna get out of bed

(then some work stuff)

The moon is beautiful

Howie and I looked at it

outside our bedroom window

and Jackie texted back:

Seriously. I have a good feeling about 2017.

We are gonna make each day count

and we are going to experience

beauty and joy each day

and I texted,

I’m with you all the way!

(lots of heart and kiss emojis)

 

I got up and ate lunch

a big spinach salad and some bone broth with Kim Chi

Marla and I visited as I ate

then it was back to bed

around 7:30 I got up with Howie’s help

and took a shower

to be ready for the family’s

after work arrival

Howie and I watched the 4^th quarter

of the Knicks – Rockets game

the Knicks were down by 19 in the third quarter

came back within 3, but fell short in the end

I plan on watching Knicks games this year

praying for miracles is becoming part of my life

while we watched Howie followed Jackie’s

cooking instructions so dinner was in the oven

at 8:30 everyone was home

the grill was put on

and by 9 we sat down at the table

already set by Marla

for a wonderful New Year’s Eve dinner

we opened a delicious bottle of Billecart-Salmon Rose

one of our favorite champagne producers

that we discovered one night years ago at Chico Hot Springs

we toasted to the year ahead, 2017, a year of fun, joy and laughter

family time, happiness and love

we lit the Hanukkah candles, a full menorah

for the 8^th night and we shared stories and more thoughts for 2017

thinking about taking trips together

enjoying family adventures and being there for each other

2017 is going to be a fresh start

a year of living in the present

being mindful of the moment at hand

and as a friend wrote this morning:

a miraculous year filled with positive energy