Things Happen

Dawes.Things Happen

“Things happen –  that’s all they ever do”

Sometimes you have to let go of trying to figure out how the train got off the tracks – the work of putting it back on is just too important.

Things happen.

When something difficult comes your way, you must resist the temptation to surmise you were born under a bad sign – or born a loser or something else.

Things happen – that’s all they ever do.

In the hospital waiting room – my 13 year old says “Hey Dad, I got a question for you.”

“OK, – go ahead”

[I have no idea what is on the way]

……… “I have never asked you this before but I need to know”

[Am I ready for this? – where are we going?]

“If you could have one superpower what would it be?”

[Did not see this coming]

I have time to think —- Flying is not an option because I am not crazy about heights and it gets really cold as you gain elevation—–those little leotards and a cape are not very insulating – flying is out.

Invisibility? You know – most of my life, I have felt invisible – I already had this power and it is way overrated — so no on this one.

The power to time travel! – now we are on to something – I would go back and tell 7 year old me that everything is going to be ok, there will be some difficult days but it is going to be alright, you will be fine.

And I would have older me come back and visit both of us right here and tell us it will be good – that we will move and grow and live with purpose and conviction because of the things that happen today.

Things happen – that’s all they ever do.

Jack White as pain medication.

This song goes with the last post. If you think the blues can’t dissolve pain – you don’t know the blues.

If you think Joe Bonannnammasssaamona is the new savior of the blues – then whatever.

Blues comes from the heart not from technical ability. That Jack White has both is something I don’t hold against him. Heard this last night and it slayed me.

Who cares about choppy resolution?

Let’s have a ball and biscuit.

Coming out as a caregiver in a “C” family.

This is how I feel while working

I was asked to write a letter by the Center that my wife visits for the treatment of her cancer – the goal being to make some changes in order to help the entire family get through some difficult days. The disease brings with it all these satellite evils that conspire and gang up. This letter is not about what got you here and the person you love – it is about the mundane and stifling which can become debilitating.

Example: Your wife was moved to another hospital for a procedure, you answer a call from your work about a problem on the way down to visit and help as best you can (yes, you already put in a full day, no, you are not mad about it, work is work, health insurance is health insurance, money is money). You left no food in the house for your 17 teen year old who is hanging out with his friends in the living room and staying home—-the scene has a “Lord of the Flies” feel about it that disturbs you as a Dad (they will go to a garage sale and get a replica sword to complete this picture of mayhem!) but—-your son is a teenager and he is dealing with it the best he can—-and you have to let kids be kids—-they will be alright. And the whole group are good kids (you pray and you hope you have done the right things to this point- there is no teaching once 17 is reached).

It’s another trip thru a random Drive Thru for you and the 13 year old, who is an excellent navigator and will keep you from making a wrong turn in the big city, damn, that was a sketchy neighborhood on the visit last night…

You are not hungry but you are very tired – you want to cry but you have no idea what to cry about – there are so many entities competing for tears, they cancel each other out and you drive on.

There was a sense of comedy before leaving when you get out of the shower and there are no towels and no toilet paper on the roll —- you are missing the “automatic” ——- there is no automatic when it gets like this.

We get home – for some reason, the group of kids had to hose off the driveway and seem to be guarding something.

You don’t ask.

You check to see if the dog has messed in the house.

No—-looks ok.

(That was yesterday, and only the 50% that I feel only semi-awkward about revealing)

Note: I did not leave my wife and her condition out of this story because I don’t care—-this post and the following letter is about what it is like to be the husband and caregiver.

I pray everyday and I know will get through this.


The following is the letter for the hospital.

Caregiver Resources does not exist yet.

My name is Wayne, my wife Marie was diagnosed with kidney cancer two and a half years ago and I am still learning as I go.

There is some help available at the center for my specific needs but there is no central “point of contact” place for a caregiver to start.

We need that (especially the husbands).

Here is why:

When a diagnoses happens – we are in shock – you guys know that – you see it all the time.

It is not a simple “deer in headlights” moment – it is “deer in headlights” structure that quickly replaces everyday existence — the way we live and the way we think is completely blown up and all we hear is something coming right at us on a dark rainy road.

And you say – “Keep everything as normal as possible.”

I know I am a loving supporter of my wife while she fights this battle –that I understand.

But this comes with more responsibilities:

  1. A politician among all of my family and friends – How do you deal with stuff that well-meaning people are going to say to you? How do I let them help? Do they really want to help?
  1. Chief financial officer for a family. Now, we have less money and more bills = much stress. Serious problems that can be made much worse unless we do the right things. How do we keep our jobs and insurance? What happens if we lose them? What about Short Term disability? What about Social Security Disability and Medicare? FMLA? When do these things kick in? Am I eligible? Can you help with paperwork?
  1. I got kids – What about the kids?

 

  1. My role is changing in the family – You might think things like laundry and meals are simple to adjust to —- and for a guy that does it sometimes – it should be – but wow – it is not.

 

  1. I still have to take care of myself – not because I want to but because I have to – this is the toughest. If I have learned anything —–The luxury of being mad at yourself and feeling like you should do more or do something different is off the table. Move forward as best you can – you have no time to waste in self-pity.

 

So I ask one of these questions as we check in on a random day last month – like who do we talk to about our health insurance and what happens if we have none? And the answer I get is “We don’t have that here – Let me see if I can find you the number for some person from this place or something or other—no, can’t find it”. Keep in mind that we have been seeing the same people at the check-in desk for two years and they know us and want to help—-there is no mechanism for them to use. How much easier for them to say: “Go to Caregiver Resources—they can help you”

The second part I want to stress is that even though some of the help might be available at this Center already – it is difficult to understand. The hospital website has the psychologist listed close to spa services – the financial help looks like it is just for bills that are already in the system. The look of the site is very clinical and cold –—-We need to be led by hand by a friendly person – we don’t know where to start and we are in trouble —- like if you just got off a plane in a foreign country and are looking to get somewhere —that is exactly how it feels. Lost in a strange world as a caregiver. I may very well need to speak to the psychologist – but I don’t want to click that link – I don’t trust it…

The American Cancer society has some excellent and targeted information on its website – as a suggestion; maybe linking to some with specific help that a caregiver needs?

Again and again – all the help and resources are largely already out there – the problem is not the supply – it’s finding out how to connect to it.

I have no issues with the excellent care my wife receives – or with the staff who I admire and respect as they do God’s work every single day.

Most of the resources are directed at the patient, as well they should be.

But we have to get that patient (in this case, my loving wife) to and from the best care they can get.

We live this with our loved ones 24/7 – when we arrive for care – we need to make the most of our time – how great would it be if there was a place we could go to get questions resolved?

And we have to keep our families strong and healthy as we all fight together.

So please – give us clear, concise and accurate help to guide us through this

Now for two things meant so much in the beginning:

The Family membership at the Y you gave us for six months was a true blessing. The kids, my wife and I could work-out. It kept her as strong as she could be. The benefits of being able to melt stress away cannot be overstated. The downside — it was for only 6 months and the application of it was clunky—–they weren’t exactly sure how to process it but were not going to argue with a cancer patient – So they put it through. In the future, if you do this —Please— an activated membership ready to go for a whole family would do wonders. They need this and would not abuse it.

And making us the family to be sponsored by the Center for that first Christmas after diagnosis was a monster help. Removing the burden of the holiday is what the spirit of the season it all about. Forever thank you for that.

I am writing this because you asked how to make things better for the caregiver from a caregiver perspective.

I will never forget when I was in the hospital recovering from G.I. surgery myself last year and the nurse wrote on my board. “Lives in a C family” She put a circle around the C. – It was when it truly hit me that I was in a different place with a different mission and better do it right. So any help I can give to making Caregiver Resources work for other people – I am all in.

Thanks for the consideration to want to make the Center work better for everyone.

Just another caregiver among many doing the best they can.

Wayne

The perfect mojito and a blue moon.

mom2

I am all for getting back to Cuba – for opening the door, talking and interacting. So – the politics are not great. OK – we love Saudi Arabia and they behead people there once a week and allow women to do almost nothing of substance. So stop with this —-“we will talk to you when you shape up” crap.

The Saudis have oil but the Cuban people invented mojitos.

I love mojitos.

Here is the cave recipe:

The juice of almost one lime squeezed into the bottom of a glass (you need a small section for garnish, we are not animals here, we are civilized drinkers)

About 10 mint leaves added to this which you will mash into the juice (I use a wooden spoon and mash for about 20 seconds)

One shot of simple syrup (you could use sugar water in a pinch, although too much work)

One shot of white rum

¾ fill the glass with ice

Add soda water to the almost top

Shake

Put that lime garnish and a little fresh mint garnish (if you want to be fancy)

Serve on a hot summer night here in NY (other places work as long as the weather is hot)  and enjoy with friends.

As a bonus: this drink works great as an alternative to lemonade when made without rum for the kids.

You might think this is tough to make: believe me – you can get this down with a little practice – and I recommend lots of practice because summer here is really short.

Cheers from the cave!

Lotus-Almost Tornado- Pearl Jam and a Perfect 7 iron.

Almost Tornado

“Look at that thing, my god, it looks so awesomely beautiful – power and energy mixed in a fury of doom”.

I kept looking at it – hanging in the sky like some giant black megalithic alien spacecraft hoovering above. Oh yeah people – this thing is the most bad-ass cloud formation I have ever seen – this son of a bitch could build the pyramids in 10 or 12 seconds (I almost believe those ancient alien lunatics theorists)  –– Back lit by the burning summer sun rising above a smooth gradient of filtered perfect greyness-Whao! Are you friggin kidding me! – I keep looking and looking. I am mesmerized.

Completely mesmerized.

A cat looking at a beam of light on the wall under the influence of powerful nip – I am awestruck.

And this was before I drove under it.

Hail and oblivion in a staccato beat of thunder and mayhem pounding the crap out of my little van. I thought I was going to roll over – I am trying to figure out what I brace against to survive intact – there is nothing – keep the seatbelt and 4 ways on parked right here and let it pass over.

It got less

It got a little brighter

And I drive through leaves and tree limbs all covered in fresh storm hail-ice on the road.

That was intense – kick ass and potent. A shot of tequila with a bull ride gone bad – Wow!

I am good – all is good – we got through it.

This storm did not get me, but it got me. (does that make sense?)

That was one adventure stuck in my mind from this week.


The Lotus

I am not a car guy – I have no interest in cars – classic cars, vintage cars, car races, cars have no foothold in my conscious.

But.

On the highway I hear this sound behind me. A sound that stood out from all the other roaring sounds associated with frantic commutes.

Like a symphony of melodious engine noise – I have never heard anything like it.

Then it passed me or should I say –gently restrained itself to not knock me from my lane as it slid by.

It was red and sleek (I mean sleek like a snake, but not a lame garden snake, a ripped-from-the-jungle-and-angry-about-it snake!)  – a Union Jack decal perfectly splashed across the entire back window – it had the word Lotus —-yeah LOTUS on the back.

I am not a car guy, I did not know —- I am thinking who makes Lotus? – maybe English looking at the flag? Was that David Beckham driving by me? David Beckham would drive something like that.

OK – A car got me – I see the attraction by those of my gender now .

I get it.


Pearl Jam

After these two events – “Black” by Pearl Jam comes on the radio and it sounds great. I am not a fan of the band, merely writing them off as ok, you know, better than Rush,  I never enjoyed a song by them. I think Eddie Vedder had something to do with Hunger Strike by Temple of the Dog- great jam that …but Pearl Jam, blahhhhh—no, not now —this song is full of fury and angst – this is great stuff.

I do not wish to know what it is about – You don’t need to know the source of a fire to be warmed by it. We don’t need to know every single friggin’ detail!!!  Music can move you in an abstract way. You place your own emotions on those that are coming at you….it works. I love this song – it got me.


Perfect 7 Iron

I played golf for the first time in a year – I used to love golf. The battle with yourself played over peaceful landscapes and a few friends. It does not get much better. But, I have not been able to play – and worse than that, my mind had revolted against the game to the point that I could not even stomach to watch The British Open – I have walked down the 18th fairway at St Andrews – I love/hate golf!

Then on #17 “Sentinel” as the hole is named – After a weak drive – I hit a “perfect 7 iron”, It flew high and with an authority of trajectory that only a golfer can understand. It made my heart flutter. What makes it special was that I could have taken the safe route and punched a 5 iron around the corner (which, believe me, I would have done 99% of the time) – not now – now we tempt fate and go over the edge of the trees!

Today we drink from the full tankard of the gods or we go thirsty.

Today we live!

It got me.

Unfortunately, I completely botched the hole when on the green, missing a very make-able 3 footer for par, which led to missing a 4 footer for bogey, and tapping in for a pathetic double. (the greens were angry my friend).


Prologue:

It makes me feel good knowing that this is written for me and that only a few brave souls will make it to the end of this long post with no fancy image to captivate.

Cheers from the cave! What a couple days I had!

“But boy do I remember, the strain of her refrain”

If you have been to the cave more than a few times you know my wheelhouse is intelligent alternative rock music…..

But-

This is my favorite line in all of music

And this is one of my favorite songs.

He is simply saying – “That girl could sing” —-but with a perfect amount of humor and restraint.

I am not from the south – but this song allows me to be part of it for a few minutes.

It is an instant all-inclusive experience of a bad night that becomes a tragic comedy.

Shakespeare put to a swampy back beat and dripping with southern eloquence.

I don’t know exactly what that is but I can feel it.

It has a power – I can feel the heat and misery of that black dog in a back yard from the famous book by Harper Lee.

Dogwood is blooming.

Please chicken-fry something up for me!

That is what makes this piece of music transendant.

It takes you somewhere.

It takes you out of yourself and you return a bit happier and a bit more settled.

You have been washed over with a splash of brilliance.

This completes my three-day quote challenge—-Thank you Apple Pie!

Cheers from the cave.