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.

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.

 

 

Giving you Thanks

Happy-ish Holidays Y'all!

Thanksgiving was Tracy's favorite holiday and when he could no longer eat he STILL loved it because he couldn't wait to see people's reactions to his recipes so this one is still bittersweet.  

(Maybe I should say bettersweet- 

as it was a bit better than last year in some ways).

Tracy loved to make meals to bring friends and family together.

Our Daughter Rachel has run that gantlet with amazing success this year again. 

The Austin Orphan's Thanksgiving 

was an incredible success

 and we have already discussed 

how to upgrade it for next year.

As happy as I was to spend time with family and new friends, there is still that constant reaction to want to "tell Tracy" oh- look at this, did you hear that?  What do we do about this?

I keep thinking I should be farther along in my healing journey after a whole YEAR which feels like 10 lifetimes.   And yet the year has flown by too.  

I hear that from others in my situation as well.

Time makes no sense  anymore (and I wasn't too good about it BEFORE our ALS Journey). 

I have done my best to stay in touch with all the new friends (and a few old ones)

 that are part of the 

~Dead Spouse Society~

 this year.  

-A club none of us wants to be part of

 but are forced into.

I am/was NOT one to race to join support groups

 and pour out my problems 

(no matter how good it is for me). 

But I am finding there is this natural migration towards those who have lived in the trenches.

The great thing about it is the absolute freedom there is between us, 

some of whom don't know each other very well at all.

It feels fairly easy to express the Truth of our situation to each other in a way I had not experienced previous to our ALS journey.  

We can make crude, rude, sad, honest, hilarious, disgusting, outrageous, nonsensical jokes or conversations about ANYTHING to each other because we have all LIVED it. 

There is no judgement.  

Life's rules don't apply to us in the same ways anymore because 

- really- what are ya gonna do to us?  

We have survived (??? at least partly) 

the WORST that life can throw at us so

What are they gonna do to us? 

Sure I gripe and get ticked about average stuff 

but none of those are REAL PROBLEMS anymore.

Honestly- I am surprised how helpful it has been for me to chat and share with these strangers that have become important heroic friends.

I still don't have the courage Tracy showed to brutally share the realities of all this journey has heaped upon me, but I am light years from where I started in 2011.

I keep thinking I am gonna help others 

but I seem to get more than I am giving and am continuously surprised by that.  

( Slow learner here).

Before ALS I was a very private person

and I really, really miss privacy on every level.

But what I learned from Tracy is that his sharing made such a difference in so many people's lives, in so many ways, it feels selfish to me to not attempt to allow others to learn from our experience 

( in hopes they can skip some of the hardships of our trials and many many errors).  

If I can save even one person a day of misery in any way- it's worth that sacrifice.

Friends and family often express the idea

(sometimes verbally, sometimes in body language, actions, expressions or what they won't or don't say)

 that I might be healthier and happier if I would just take some time away from it all to let myself heal.

I have tried.  Really I have.  

But it seems like each time I do,

 the Universe will throw a text my way or a situation or a phone call or commercial or another person's health issue in my way,

 creating an absolute impasse,

 unless I find a way to deal with it.  

I am so so thankful to all those who helped 

Tracy and me

 and that continues even now.

If it wasn't for those who were kind enough to reach out and communicate and share and support and  listen or tell a shockingly accurate situational story

 I don't know where I would be.

Thank you all for the love and encouragement and friendship and jokes and pranks.

Thank you for remembering Tracy

 and sharing photos and stories of his crazy life.

Agree or disagree

 but do it all from a place of love 

because I have learned 

that as corny as it sounds-

It really is all that matters.

Ask Questions before accepting answers

 Who do we believe and why?

I don't have answers.  

I have questions.

Those questions allowed me to find out that not all answers are created equal.

 

In some ways I believe now that not really knowing much provided me with an opportunity to ask questions others would be too embarrassed to admit they didn't know the answers to.

I started with NO knowledge, not even enough to know what questions to ask!!

I still don't know very much

 but what I learned is to not accept the first answer that comes along as fact.

 
I want YOU to start questioning everything

 you accept to be true

 just because someone told you it's true.

THINK!!!

Make the information pass YOUR test for logic

as my father would say.

 

What I have learned from our politicians these past few months is that 

EVERYBODY has answers!!!

They might not be to the questions we are asking.

They might not be the correct answers.

The answers might not make any sense at all.

But boy oh boy everybody sure does have an opinion that most of the time

they speak as if it is fact.

In the words of my friend Dorothy:

Throw a percentage behind any trivia and most people will believe it's true.

 

 

http://www.fda.gov/ForConsumers/ConsumerUpdates/ucm378100.htm 

 

So the FDA in 2013 says they are backing off of some antibiotics. 

Why would they do that?

Obviously because there is enough evidence showing cause for concern for our health is my guess.

Not a fact. It's just my opinion.

But we are still allowed to eat the food they believe is unsafe while they transition with NO warning label or commercials by FDA- but they know it's bad for us. 

Right?  

I'm looking for answers to try to make sense out of this new world I have been forced into. 

I used to believe most of what I was told by "Professionals",

cause come on, they know more than me about a lot of things.

Things just don't make sense to me- 

but no one else is acting all freaked out so....hhhhmmm...

What am I not understanding here?

 Take the commercials on TV NOW that send the message-"don't be a fool by falling for this marketing hype about antibiotics being bad for you" with an actor portraying a goof with an IQ of about 30 showing how stupid we are for being gullible enough to fall for ever thinking animal raised on drugs will in any way be effected by them if they stop using said drugs in the magic amount of time to pass "the FDA test" (the same organization that tested them to say they were safe to begin with that are changing their minds) for what THEY think is a reasonable risk to OUR health. 

 

Why are they allowed to purposely put our health at risk by telling us things in a way that will harm us? Isn't some sort of crime if a business cons us with the intent of making money knowing it is a risk to our health? 

 If a toy manufacturer sells a toy that later spins apart and blinds a child, or a phone catches fire or a car's air bag kills someone what happens?  

They recall it.  

They Stop production until they change it.

You don't see continuing advertisements selling these BAD items do you? Or do you?

I don't really know.  I'm just asking questions here.

But they are following FDA regulations so they are not at fault so we have nothing to worry about I guess.  Our meager little minds can't conceive of all the complicated jargon that now makes our unsafe drug ridden food magically chemical free is the message they are sending to us and I sure am confused so maybe they are right.

 

 http://www.thefarmersdaughterusa.com/2015/09/there-are-no-antibiotics-in-your-meat-now-stop.html

Now here you have a gal who is explaining exactly WHY these animals are "safe" to eat because it's HER BUSINESS to do so. 

And Because they meet the FDA regulations she says.

The same regulations that they started changing years ago.

So...since I don't know much about anything it's very confusing to me how the very agency this gal is using as her meter for safety, that has ALREADY had to recant their decision that it's SAFE to eat antibiotics, is telling us WE ARE STUPID for not believing her opinion that this is all safe. 

I believe her rant began because her business got slammed in this CNN report.

http://www.cnn.com/2015/09/15/health/fast-food-meat-antibiotics-grades/index.html

But I don't know really.  I'm just guessing- as do most people who put information out to the public I am finding.

 If you sculpt a donut out of cow poo but it looks like a chocolate donut and it's decorated like a donut and maybe they can even make it smell kind of like a donut-

it's still a pile of crap.  

But a lot of people will believe it's a donut.

 

 So- Why am I posting this? 

 

I don't care if you eat healthy or not.

 I care that if you WANT or NEED to eat healthy you CAN

 and that if there are delicious deep fried, chocolate covered poisons

 you want to enjoy

 YOU have the right to KNOW

 how much poison is in there 

so ya know just how much you can handle.

Your life. Your choice. 

 

In our ALS journey we were told things that were NOT TRUE by (well meaning ?) medical staff repeatedly.  For a long time we believed them.

It cost us valuable time and changed decisions that could have improved the quality and/or length of our lives.

We were also repeatedly, consistently chastised for bringing the medical world healing information that was HEALTH and FOOD related- not drug based.

Each time we were given the same answer by each person. "There is NO PROOF" that works.

Don't get scammed.  If it worked wouldn't everyone be doing it?

 

When I asked if they had done or were willing to do any research about it I was told by doctors and ALS association groups that the money from those campaigns you all were so generous to donate to ONLY goes to DRUG research controlled by the FDA.

Guess what- LIVING, breathing, working people 

ARE PROOF

 that something is working better than nothing 

which is what those with ALS are offered by the medical world.

I can find NO cases of people being 

"healthied to death".

I do however personally KNOW people diagnosed with ALS and had their cases RECONFIRMED as ALS that have REVERSED their symptoms by means of extreme healthy living practices.

HealingALS.org

ALL these people say the same thing.

Most doctors consistently refuse to accept or share or even listen to how they are healing themselves.

We are brainwashed to put our first trust in people we do not know that have NO PROOF that what they say is true because of their position in business and we are taught reasonable nice intelligent people don't fly in the face of "their qualified opinions". 

 

I say RESULTS ARE PROOF. 

First hand results are proof.

If a doctor tells you there is NO HOPE. NO HELP

as we were told over and over again,

that just means THEY don't have the answer-

not that there aren't answers.

Find those who have accomplished what you want to.

They are out there.

They want to help.

HealingALS.org

Donate today so

others like Tracy 

have a chance.

The Dewie Effect

Yesterday I did things all day that I thought Tracy would love or love to do.

Today I went to a funeral- 

something Tracy would NOT do. 

Not even to his own.

Seriously.

He didn't want a funeral for himself.

Tracy never ever went to funerals with the exception of his mother's just a year before he died.

He hated the whole idea of sitting in the sadness and macabre details of the demise of a life.

Today I went to the funeral for Dewie Quortrup,

 another ALS angel who left the planet Oct 23rd.

It was heart breakingly beautiful.

As family, friends and caregivers spoke

each and everyone of them mentioned 

"The Dewie Effect".

This is the instant and overwhelming, 

undeniable feeling of

unconditional love

 you feel in her presence. 

She couldn't speak or move at all and yet- 

there it was.

I was absolutely stunned by the intensity

when I first met Dewie and couldn't help but

blurt out what I could feel but not explain.

Pete, her devoted husband, just grinned as he had heard this from Dewie fans around the world 

their whole life together.

He named my loss for words and explained that

I was not crazy or imagining it.

To hear person after person at the service

 expound on this intangible, magical mystery,

it validated so many things one tends to contemplate

when put in the position of widow or widower.

To be honest it was horrifying to me to see other ALSers

still on their journey, 

sitting in the audience, forced to watch

and imagine their own limited future.  

It's difficult to sit with friends who have themselves, 

lost their loved ones recently knowing the

deja vu of emotions being replayed when all I can

do is just let them know they aren't alone.

To listen to Pete elegantly and eloquently yet painfully convey all that Dewie was

and what we have all lost and will miss

 almost made me agree with Tracy- 

that this may NOT be the

best way to show support.

But there was also so much to be gained by sharing this day.

I felt so Lucky to be allowed to be there

to experience the deep love and commitment 

by those who willingly took on the challenges

of caring for someone with ALS. 

To hear each speaker glow about Dewie's smile

and vibrance and JOY in life up to her last day is

such a lesson to us all.

We are NOT alone in all this.

Love is NOT an intangible.

I went to GIVE my love and support

 knowing the challenges that lay ahead for the family, 

hoping to be helpful even if it was only in some

small way,

but once again,

I ended up receiving so much more than I gave.

 ~What I learned~

The best we can do in this life is to

continue to Share 

The Dewie Effect

with each person we meet so that 

they can experience the unconditional love

Dewie shared with us all.

This is called Living.