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Wednesday, December 28, 2016

Horrible but Hilarious

In our ALS Journey there were so so many things to deal with that there was absolutely NO way to be prepared for.  As horrible as many of them were to deal with there were some absolutely Hilarious ones too.
One of the great things about dealing with those in the ALS trenches is their blunt honesty that comes from not having any time to waste and no energy to filter or worry about being PC.

Many horrifying situations that were or could have been life threatening (to only deathly humiliating) are shared among those who "get it" in our world with a great laugh.

Occasionally one of us has a verbal slip, either by accident or on purpose, to or in front of those sensitive thoughtful caring people who are lucky enough to be living a "normal life".

This is rightfully met with a gasp, sputtering, blushing and or cringing.  Those who are unseemly enough to laugh out loud right along with us take us by surprise and are taken into the fold immediately.

When those from the "outside" only view the hardships of healthcare and sympathize our imagined hell they miss the LIFE that still goes on between all the things to do.

In our experience we had the natural tendency to blurt out what we knew people were thinking so they didn't have to slap themselves in the forehead for saying it later.  It allowed people to relax in conversations when we said out loud the absolutely worst thing imaginable so no matter what slip anyone made it was clearly nothing that would upset us in any way.

Sometimes it was just entertainment for Tracy who was such a doer before ALS.  
I think he just got bored and had to stir the pot.

Example:

Tracy: in front of the salesman- buy me that 
(insert any ridiculously expensive electronic device).
Me:  I pretend I can't understand him and smile and nod.
Tracy: He begins to try to order said extravagance directly from the salesman to get even.
Me: What the hell?  No.  What are you thinking?
Tracy: But it's my dying wish!
Me: You are maxed out on dying wishes this week buddy.
Tracy: Puppy eyes to the man bonding over the shrew wife thing.
Me:You won't have to worry about ALS killing you because if you keep this up I am gonna put your chair on turbo speed and aim you straight out that door onto the highway.
Salesman: Pretends he has an emergency call on a pager that isn't working.
Me: You jackass
Tracy: Shit eating grin

 As a matter of fact, my dear sweet (Jackass) dead husband- yep, I said that word dead out loud again, LLLOOVVEEEDDD to watch people squirm as he casually threw out verbal jousts just to see what they would do.  No matter how many times I kicked him or his wheelchair he would have that little boy grin with absolutely NO sign of remorse at their clear discomfort and or embarrassment.  

Originally I just thought it was Tracy being Tracy but through these past years I have come to find out that it's not just ALSers.  
My Dead Spouse Society is a club none of us wants to be in but there is a freedom in this kinship because we tend to say what we REALLY mean more often than most.  No matter how horrible it sounds there is absolutely NO judgement because we understand that you can deny the truth or not talk about the truth but that doesn't change the truth.  We tend to deal with harsh realities every day so acknowledging them is somehow easier for us than the energy draining appropriate rehearsed responses deemed acceptable to main stream society.

We do our best on good days to not subject you all with horrible but often times hilarious truths of our situations or journeys. Know that we don't purposely set out to send you running from the room with our comments, (well, most of the time).  
It's not really our fault.  
It seems our Give a Shit Genes gets damaged during the process of our journey
 (and some of us were lucky enough to never have that quality to begin with). 
Yes, Tracy....I know, I keep ending sentences in a preposition. What are ya gonna do about it now?  Huh?? Even now he haunts me about it.  There I go again.....

I wish I had the bravery and spontaneous honesty that I reprimanded Tracy for so often so I could share some of the situations we found ourselves in so you could better understand, in order to survive a long term chronic illness, sometimes you just have to laugh.

Perhaps I will block all my family and some of our close friends so I can share with those I never have to look in the eye, some of the realities of living with, instead of just dying of a disease that no one else is bold enough to talk about.

Tuesday, December 27, 2016

New Year

Am I right or am I right?
2016 
was a terrible year 
for so many people for so many reasons.
Even PollyAmy
 has to admit
 this has been an exceptionally rough one.

Holidays, in general, bring their own set of challenges for any family but most 
especially for those who have lost a loved one in this past year.
Not only did I deal with Tracy being gone but I also had at least 6 other
friends or family members that lost someone in this past year as well.

Knowing exactly what they are going thru is more of a reliving than just a sympathizing for me now.
Learning to deal with the emotional roller coaster that bushwhacks us just
when we are so proud of how we are holding up is energy draining to say the least.

But I have to say,
 this Christmas was a bit easier to navigate
 than the last.
It's not that I miss Tracy any less.  
It's more like getting a limb lopped off.
You always wish you had it back.
I just learned to deal with the loss better I think.  
I still miss everything
(yes, even the "bad stuff")
 about our old life.   
That is the new realization for me this year.
Now I am aware of mourning, not just the person,
 but also the traditions, life style and past comforts.  
I miss my friends, home of over 30 years, freedoms and family back home.
 All these things I now have time to miss.

I am not the kind of person
 that yearns for NEW things.  
I have always loved my old things
(much to Tracy's dismay).
They have history and energy and stories.  
Tracy loved the adventure and excitement of getting 
whatever the next new gadget on the market was.
 New cars, clothes, electronics, etc... brought a gleam to his eyes!
I often joked with him that I was surprised
he hadn't traded me in for a new model.

But I do understand the only constant is change.
I'm not thrilled about it,
 but I am doing my best to make decisions that
will allow me to create my own new life,
which is kind of weird since I never had my own
old life.  
I have only been a "we" never a "me" before this. 
The fact I never wanted this freedom makes moving towards it even more difficult.

The New Year brings resolutions for improvements.
Trying to imagine what I could or should be
doing in the next year seems impossible since I never in a million years, 
thought 
I would be in the position I am in now.  

To me- Literally - 
ANYTHING is possible
because I have experienced the impossible.  

As I discussed the pros and cons of decisions for independent living, 
work, expenses, my future...., my daughter made a comment to me as I was listing
all my concerns.  
Suddenly she said- Who are you?!
(Rather exasperated)

She was taken aback as I was focusing on the "real" grown up, tangible concerns
and decisions that will surely go along with a new life.
She emphatically reminded me of what I would 
(and do) 
say to
others who get wrapped up in their imagination of "what if's".

It really was a wake up moment for me.
No one knows what the future will hold
 no matter how
hard you try to prepare for it.
(I still believe a moderate amount of preparation is 
necessary in life to keep from taking advantage of 
others hard work).

This year's resolution:
The shoulds will be replaced by the 
want to's or gonna do's.
Desire and passion are in the forefront.
The problem for me is balancing what I want
(to have Tracy back) with what is reasonable-
which I am absolutely not equipped to handle
as it has NEVER been a description referring to me and I say that
with NO apology.

The compromise puts me back into the
 ALS arena I believe.
I can find no way out because I refuse to let those 
struggling in the madness of how this disease is 
handled, suffer needlessly while drowning in misinformation
and skewed thinking.
I refuse to let all that we learned in our journey
die with Tracy
 because I KNOW for a fact it can help others.
If it wasn't for those kind souls who remained in the trenches,
who fearlessly and generously helped us, 
I don't know how
long we would have made it.  

I can't LIVE in the past.
I can only learn from the past and apply it to NOW.

So as I have pondered ending Tracy's blog with the new year, 
because let's face it-
I am not the master wordsmith he was,
I think for now
I will do my best to continue imparting 
(what I consider as) 
words of wisdom
in hopes that our journey can help heal the world, not only of  ALS
 but also the medical madness
 that goes along with the diagnosis.

I wish for you all Peace, Love and Joy 
because
the truth is-
That is all that really matters.