Thursday, January 5, 2017

Not Every Day Has To Be A Strong Day

30 degrees below outside
a high of 2
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

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