Catch 22

Catch 22

Ok. I will get to the catch 22 in a minute.

First, I want to say, if you look at David, you would think, ‘OMG! He looks great!’  And he does; for sure!

But, as the saying goes, looks can be deceiving.  

Yesterday, there were many meltdowns, and we decided to run an errand all together. 

Sometimes, it just changes your perspective when you get out. 

You know?  

I tried to start my car. Nothing.  No clicks. 

No nothing. 

We jumped it. 

Nothing. 

We took apart the nuts and bolts to clean the corrosion. 

Still;  nothing. 

Boy, was I glad it happened in the driveway and not the highway. 

Remember the flat tire that happened in the ‘driveway?’  

David was the one looking under the hood, unscrewing things, and directing ‘traffic.’

But then 

his legs gave way... 

and he had to sit down and tell us what to do. 

He sat down 

in his wheel chair 

and turned on the oxygen, gasping for air 

like he was drowning. 

We did all we could do, under the guidance 

of our Chief. 

But the battery?  

It was most likely dead. 

We unscrewed it; me, Hannah, and Matt. (Lol)Took it out of the car and put it in the suburban. 

Then we (me, Hannah, and Matt) pushed and steered the car to the street and parked it by the curb so we could drive the suburban. 

We have a one car driveway. It took all of our muscles. 

We all drove 

to the Auto Zone 

to have them 

test the battery. 

Not only was it DEAD, 

the sides were bulging and it was a potentially hazardous situation. 

We bought a new battery as David sat in the car 

on speakerphone 

telling us what to do. 

By this time, 

he was out of breath 

and worn smooth out. 

Got the new battery, 

went home, 

encouraged David

 to go inside, and put the new battery on. 

( me, Hannah, Matthew)

Ya, it takes at least three people to do David’s job. 

Catch 22. 

How does David feel when we tell you what he can’t do?  Right... which is why it is so hard to post sometimes. 

But, honestly, he can’t. He looks great; yes. But, people?  He can’t breathe. And he is so afraid of winter. 

Oh ya, 

and Social Security?denied us, today...

We are at the end 

of our pennies;

thought for sure he would be accepted, 

but now we are back 

to square one. 

Oh, person 

who contacted me 

while David was in a coma to get a lawyer to help us with disability...

I just thought...

there is no question!  

We can’t afford 25% 

of what we receive 

to go to lawyers. 

I can handle this!

Turns out... 

I’m not as smart 

as I thought I was. 

We are literally 

living off the kindness 

of people. 

Literally. 

That is overwhelming 

in and of itself. 

Tears 

are very deep right now. 

It was a hard week 

even before we received our letter of denial today. Everyone has had a meltdown this week. 

I do not speak lightly 

when I say meltdown. 

I am like, all that is left 

is a puddle. 

Please, please, keep us close to your hearts. 

But can I say?  

What?  

A flat tire in our driveway. And a dead battery 

in our driveway. 

Someone 

is watching over us. 

Oh, and the grocery angel who has been delivering free food to us...what???

Living off kindness. Both scary and comforting at the same time. 

And the sweet and loving letters received with help? Overwhelming. 

Every time I sit down to write a thank you card? I cry and am without words. I am so sorry. 

But I (we) very much do appreciate everything you are doing. Words, acts of kindness, monetary...we are living on every inch. 

And we don’t know how to say thank you except for thank you. 

How inadequate it feels. 

XO

shelli 

Sent from my iPhone

A view from Hannah’s eyes...

In the new avengers movie, 

there is a scene where the villain 

snaps his fingers and random people

 just start fading away. 

With little to no warning, they become 

dust and float away in the wind. 

I feel like that a little bit this year. 

Like I’m just waiting for someone 

to snap their fingers 

and dad to just disappear… 

It seems like he is stuck in an existence between life and death. 

Life is so fragile, and it has shown us that 

in the cruelest of ways this year. 

It only takes one moment 

for it to all be snatched away from us. Changing things forever. 

Yes, good things will come from change. 

They always do. 

But change is so uncomfortable-painful. 

Mom always tries to make us see the good 

in the bad that is happening. 

“Look,” she says. “Dad has worked so hard 

all his life, taking care of us and doing things he didn’t want to do. Its his turn now. 

HE gets to rest and we get to take care of him. He deserves it.” And she is right. 

I see though... 

I see through her eyes 

deep into where she feels sad. 

No one is taking care of her anymore. 

Dad, who fills up her gas tank 

before its empty; dad who works 

so she could stay home with the kids; 

dad who anticipates bad things 

and prevents them before they happen…

and that’s all gone. 

Everyday, she hugs dad, 

she holds him tight and long. 

Life is fragile. 

It can be snatched away in an instant. 

We have to be grateful 

for what we have when we have it. 

There are a few things 

that are worth celebrating, however. 

My brother, Jeremiah, 

found the love of his life, 

and is getting married. 

We don’t know when yet, 

but he asked and she said yes. 

We are so exited and happy for him. 

It still seems funny to me though. 

I can’t imagine it. 

We used to pretend to be married 

when we were little, and now he really is! 

Another thing, 

we are constantly reminded we are not alone. Just when we think we might be, 

someone comes along 

and does something for us 

that is just so indescribably kind; 

we feel washed over with just a little relief. 

Every day is a struggle, 

but as long as we are surrounded 

by the friends and family 

that care so much about us, 

we will be ok. 

No matter what happens. 

Hannah-Rose 

Sent from my iPhone

Social security, spring cleaning in the summer, and update

Social Security Saga and other things...

‘So, what we are 

saying is....

we don’t really 

trust your doctor. 

You will have to 

come to OUR 

‘special’ Doctor 

(in TIMBUKTU)

who is better than a Pulmonologist...

and do the 

SAME tests 

that HE did, 

to see if WE can find something different,

so we don’t have to 

give you any benefits.’

(I know, my version 

has an excessive 

amount of snarkiness. 

It’s my interpretation, 

.......however, 

I promise you.....

it’s not that far off.)

Never ending Social Security Saga. 

In the meantime...we wait. 

The boys are cleaning, getting rid of, etc...both the shed and the garage. And I am going through one drawer and closet at a time doing the same. 

Whether we 

have to move 

or not, 

we will be ready. 

And if we don’t? 

We got that spring cleaning in that we normally do starting January till March in preparation for Pesach. 

I love spring cleaning. 

It’s always more than 

just cleaning and getting rid of things. 

It is also a time to look

inward and 

evaluate my life.

Where am I?

Where do I want to be?

Letting go of things 

that are standing 

in the way 

of the road ahead;

and taking on 

new things 

to help me on the journey;

sweeping out the corners and the cobwebs, 

and uncovering 

that better version;

of both home

and heart. 

I feel like 

I should let go 

of quite a lot of things 

that are standing in the way 

of moving forward. 

Fear, worry, stress, etc., 

Or rather 

‘MY RESPONSE’ 

to these things. 

Since 

fear, 

worry, 

stress, etc., 

are most likely 

lifelong friends 

of any normal person. 

Sometimes I think in movies and songs. 

On one hand, 

I’m thinking of a scene from Blind Side 

with Sandra Bullock.

Social worker:

‘Do you find it odd Michael, 

your predicament?’

Michael:

(Rubbing his legs in an anxious way) 

‘Can I go now?’

Social worker:

‘No, Michael, you can’t.’

It’s funny how I can hear the actual voices 

and all the inflections in my head. 

I’m like Michael, on one side... 

‘Can I go now?’

And life says,

‘No, Michelle, you can’t.’

(Life calls me Michelle when I’m in trouble.)

And then 

on the other side, 

I hear that song by 

Meghan Trainer 

and

John Legend.

The one that says,

‘I’m gonna love you

like I’m gonna lose you

I’m gonna hold you

like I’m saying goodbye

So I’ll kiss you 

longer baby,

any chance that I get,

I’ll make the most 

of the minutes

and love with no regrets.

For full YouTube version:

https://m.youtube.com/watch?v=2-MBfn8XjIU

Hannah: ‘Why are you listening to that song, mom?’ (With a look of stop listening to sad things!)

‘I’m trying to change my perspective, love.’ 

I handed her my writing and she was like,

‘Oh, ok. I get it.’

Our eyes lock together.

Without words, 

we nod our heads;

shrug a little,

and protest a lot 

on the inside. 

But try not to. 

But do anyway. 

And so, 

on we go, 

spring cleaning 

inside and out, 

with a 

‘better late than never’ attitude. 

With that being said,

living with ARDS 

is really no easy task. 

<<<<<<<<<<<<

Post intensive care syndrome is really a thing. 

Profound weakness 

Shortness of breath 

Limitations to his

quality of life. 

With ARDS, 

fluid leaks 

into the lungs' 

tiny air sacs, 

called alveoli, 

which are supposed to inflate with air. 

As a result, 

he has 

an extremely hard time breathing 

which causes 

inadequate levels 

of oxygen needed 

to fuel organs.

Has hands and 

feet have been 

continually swollen 

since being home, 

despite our best efforts. 

He can’t even wear his wedding ring 

or old shoes. 

Bouncing on an exercise ball to shake up the circulation/ lymphatic systems, exercise bike, herbal diuretics to help with water retention, Rx’s to help with that as well, water intake, none of which 

have had much success 

in bringing down the swelling. 

His kidneys 

are fighting 

to stay healthy.

Which is why

the swelling. 

Organs

NEED 

oxygen.

He must lay on his back. 

It squishes his lungs 

to lay on his side. 

So snuggling 

is off the table. 

I snuggle next to him 

with my head 

on his chest...

and his arm 

keeping me close,

even though I protest. 

He is so fragile, 

I’m afraid 

I am hurting him 

despite HIS protest 

that I’m not. 

He has permanent 

lung damage 

and different degrees of physical, 

cognitive, and mental health problems.

He is so weak 

even after much 

physical therapy. 

His taste buds have changed 

and he doesn’t like many 

of his favorite things anymore. 

(I know I am repeating myself on many things. It’s just an update of what still is.)

He had to sleep in the recliner last night because the last few nights 

he has woken up coughing 

and not being able 

to catch his breath fully, 

despite the help 

from his oxygen compressor. 

(fluid in the lungs;

an ongoing problem 

because of the 

extensive scarring 

in both of his lungs.) 

I have been 

seconds away 

from taking him 

to the emergency room

the past few days. 

And some days 

we still cry; 

a lot of days. 

He still can’t laugh 

out loud. 

He does laugh though, 

and makes jokes 

about his ‘predicament.’

Always making us laugh 

through our tears. 

Best man ever!

Fear, stress, worry, etc.

Not enough time 

in the day 

to do everything. 

There is always something to do daily 

with what person 

needs this 

or that 

to be faxed or mailed 

and some creditors 

that won’t wait 

for our financial approval, 

so we started paying them 

five dollars a month. 

Bills keep coming 

and money doesn’t. 

We have never been late 

or missed payments;

but if something doesn’t give, 

then we will have 

no choice. 

And so, 

“I’ll kiss you longer baby,

any chance that I get,

I’ll make the most 

of the minutes 

and love with no regrets.”

My new motto.

So, please excuse my messy, 

disorganized, 

crazy, 

overwhelming life, 

house, 

desk, etc...

The shtuff can wait. 

It will still be there tomorrow. 

It ain’t goin’ nowhere. 

I got some lovin’ to do,

NOW. 

XO

Shelli 

Sent from my iPhone

The good, the bad, and the whatever...

Today, I ran into a friend, 

and my tears
came fast.
No one knows
what to say.
I get it.
But the eyes say everything, 
and it makes me cry. 

The eyes say;
I’m thinking about you. 
I’m praying. 
I’m sorry. 
I wish I could
do something.

And it makes things
easier, 
for the moment.

You must read 
between the lines, because 
I cannot share 
everything.

I’m repeating myself...
only because
this is an update 
and things 
are much the same. 
He exerts himself; 
he cannot breathe. 
It feels like 
jumping in a pool 
and accidentally 
trying to breathe 
while under water. 
And watching 
him gasp for air 
while walking 
causes my heart to sink.

It is impossible 
for him to work. 
It’s impossible 
for me to have 
an outside job
just yet. 

Social Security 
still needs 
yet another thing... 
(Shocker!)

We are scraping by; 

getting down to the nitty gritty; 
and it’s scary as hell. 

Moving is inevitable.

It’s bittersweet 
in a way. 
We are considering Denton. 
It’s less expensive 
and UNT 
is handy for the kids.

We have been 
in this house 
for 22 years. 
All of our memory’s 
are here. 
We planted trees; 
they grew; 
we made the walls our own 
with happy colors;
grew vegetables...
I nurtured babies here; 

read to them; 
tucked them in at night. 

Built a life. 

It’s hard to leave 

comfortable
when everything else 
is so uncomfortable. 
Can we have at least 
one comfortable thing? 

I’m thinking of
‘Fiddler On The Roof,’
where Tevia 
shakes his fist to G-d 

wanting things to not be so hard. 
I can’t remember 
the exact quote. 
Maybe I  am not 

remembering correctly. 
I just see him 
shaking his fist; 
a liberating thing. 

Why should we 
lie out loud 
when inside 
we are screaming
‘why?’ 
Passion is a good thing.

And then there is the

question and answer article about

‘Why is life so hard?’

One response said this:
—————
‘Why is my life so hard?
Lacking specificity as to what parts of your life are difficult right now, I don’t see how anyone can give you a complete or comprehensive answer to your concerns. But there are some lessons to be learned in a more general sense.

Ask yourself these two questions…
• When is life easy?
• When is life hard?

– Life is easy when we have arrived! We’ve reached our goal and can afford to kick back and take life easy. Nothing is expected of us beyond the basics of survival.
– Life becomes much harder when we are learning, striving and growing. We’re in unfamiliar territory, expending great energy, being challenged, contemplating the unknown, and, not unlike a race car driver, negotiating dangerous turns towards an outcome that is uncertain.’

————-

And that’s how it feels... 

negotiating dangerous turns 

towards an outcome 

that is uncertain. 

And so we continue to go 

towards turns that are dangerous 

and wondering what the outcome will be; hoping it will be good, because honestly? 
We are done. 
Can we get a little 
good in here? 
Don’t you hate it when 

people say bad is good? 

(even though it’s true.)

XO

Monthly check up...

David had

his first 
Doctors appointment 
this week.

He did well 
in the wheelchair. 
We have a
‘push only’ 
wheelchair 
and not one 
that has wheels 
for the patient to be 
more self sufficient. 
He is for sure ready 
for something like that. 
I think he would do well. 

Options are good. 
When he overexerts, 
we can push. 
And when he’s 
tired of being pushed, 
he can grab the wheels 

and speed ahead of us...
(I can see that 
in my mind.)

Add to the list of needs;

A speed-racer wheelchair. (Giggle)

Walking just from the bedroom 

to the living room 

with or without oxygen 
is overexertion for him,
and when he 

sits down after exertion,
he is trying to 
catch his breath 
and 
looks like he 
ran a marathon.

It was really good 
seeing Doctor D.
Full of personality
and kindness.

He listened to 
David’s lungs, 
and did several tests called the PFTs (pulmonary function tests) 
and an X-ray.

He will also be 
filling out another 
RCF form.
(Residual Capacity Function)

He does fine 
sitting down,
It’s just the getting up
and walking
that cause 
great exertion.

Exertion comes super quick 

and then he has to sit down 

with oxygen to recover.

He did well 
sitting upright 
for so long 
in the wheelchair 
and the car.

We left the house 
at 10am 
and did not 
get back home till 4pm. 
I was 
more anxious 
about this 
before we actually went. 

But overall, 
it wasn’t too bad.

Except for the fact that 

I am a little reckless at 

pushing the wheelchair.
I should get a sticker
for my back
that says
‘student driver.’

And then there is this: 
the Doctor told us 
we were ready to go 
and I started walking out of the room 
without David, 
still in his hospital gown.

‘Helllloooowwww,’ says he.  

‘OMG! 

I’m so sorry! 

What am I thinking?’
........
About the boys in the waiting room

About making sure we ask the doc 

everything we wanted to ask

Breathing

Paying

Pushing

Getting copies to fax to Social Security

Printing out copies 
of things the Doc 
needs from me

Asking for an RX for a handicap placard

Lunch 

ETC...

And then I did not plan perfectly in advance...
Everyone’s hungry, 
thirsty and tired,
because I didn’t think
that far ahead. 

The PFT’s..
He did as well as 
could be expected 
at this point; 
his lungs are still 
severely damaged,
and it is yet to be known
how much more
they will improve.

Let’s just say,
without a single doubt,
he qualifies for
SSDI.
And the reality of that
felt like a gut punch. 

Bitter-sweet...

But... 
he is certainly
becoming more
self-sufficient. 

Still learning the ropes;
all of us. 

Today, 
I pondered
that dirty word,
DISABILITY. 
And decided I would change it to 
enabled ability, 
and would call it 
en-ability. 

This has enabled us to:

Live in the moment.

Appreciate 
every ounce 
of good.

Love more.

Chill more.

And it has given us
the ability;

To see what’s important. 

To love deeply. 

To live fully. 

To enjoy one another. 

Learning to 
lay down anxiety.
We have today.
We can’t ask for more.

Might as well
enjoy the ride. 

Learning curve....

Disability is like
A death sentence. 

Ability 
breathes life
into a 
hopeless 
situation.

And enables us
to rest in that.

XO
Shelli