Who To Love

I write to sort out my thoughts. I also have hundreds of entries that have never been posted for that very reason. This one is one that I have been dealing with but not knowing if I should write something just for me or if it should be shared. I decided on the later because of how much it is really touching my life.

My uncle has ALS. He is entering the final stages and it is ripping me apart. This week the dreaded day came where I went to visit and he did not wake up, he was not alert. I know he will be again, but the day approaches where I he might not be responsive. I have been tracking his deterioration mentally for a couple of years now with percentages. His upper extremities are at 0% now, even the side to side wiggle he used to do with his fingers is gone, his legs are now bellow 10%. His head remains the most active but even that is hard to gauge now. He seems depressed, he seems angry, he seems to finally be losing it and wants to trow himself from his bed.

To say that this is hard to watch is a understatement. The side story is the one that comes with a lesson.

I did not know that one of the big decisions with ALS is “vent or no vent”

I was aware of the whole feeding tube part, but did not realize that there are more tubes involved as well. And with no living will, things get a little trickier… OK a lot more complicated.

Let him die with dignity… and I guess that means him not knowing what he has and keeping the hope alive that he will get better.

True to my black sheep persona I was alone in team reality for 2 years. People started coming to my team little by little until there is only 2 people standing on team denial. However, one of those people is the decision maker that is pushing for extending life as long as possible.

My first big blow out came after the long hospital visit where he was outfitted with is trach and feeding tube.

Me: We need to start thinking of next steps, palliative care, I don’t want him to suffer.
Denial: Don’t even mention the word death in front of him.
Me: We cannot ignore it he is going to die.
Denial: I forbid you from even saying that word in front of him.
Me: He is not going to ever eat again, or more than likely even talk.
Denial: I have been the one dealing with those things and I will keep him alive as long as possible.
Me: That is no life, he stopped living the day he asked me what he should do. I have been dealing with the reality that he will die since that day.

… then I walked away, I felt the anger rising, I felt the rage just boiling over… I felt powerless… I cannot fight the disease, I cannot fight the person that is going to keep him “alive.”

And here is where the title of the post gets tied into all of this. Nobody knows what goes on in the middle of a relationship. You only see glimpses. Actions do speak louder than words… and I have seen a lot of actions lately, actions against a person that is almost completely paralyzed and cannot walk away anymore.

The first one came some months ago. One of the many extended family friends that stepped out to the plate to take care of my uncle at night decided to not do it anymore. It was not because he could not take the burden but because every little thing seemed to set “denial” off. “Denial” will then spend the rest of the night arguing with my immobile uncle about, money, or family, or past transgressions. I wish that was the first glimpse but some years back my uncle took a “sanity” vacation away from it all. The fact that he used to have to “sneak out” to visit family was always a clue, but from my black sheep point of view I could see how that seemed at least logical… trying to keep the party in peace.

One of my uncle’s saying resonates strongly with me… “Love does not last in an empty belly.” I used to take it as an encouragement to always be a good provider. Now I doubt that it meant that to him… I have more questions than answers, but he is not able to communicate as before and I wish I knew so much more than I do… in my eyes, love would foster compassion, and may actions right now don’t seem to be about compassion.

You have to be very careful about who you end up with, you never know who will be making decisions for you. Write a living will, know how that other person would react. I used to think that being a caregiver for your spouse was a given, but not everyone is equipped emotionally or physically. The last 2 years of seeing my uncle like this have really made me evaluate my life and what I want from it. It is not just about who to love, it is also about who truly loves you.

OMG BBQ, Get set RAMBLE!

- You know those days that seem to fit like a weeks worth of stuff into… I just had like 5 of those.
- Its awesome to potentially be in a list denying you entry to visit a loved one even though you were out of town while the drama happened.
- Oh yea, I went to an awesome wedding.
- I danced, and I ate til my belly almost burst.
- Oh and I got farted on too, no lie.
- Not just a fart either, it was a full shart that probably required panty change.
- I also went to a high school graduation where I counted the non-whites in attendance.
- I have always loved rednecks, Travis indoctrinated me into the culture.
- I have been listening to and liking country lately… no shit… I know its hard to believe.
- I have encountered a new set of people I dislike, rednecks that become hipster douche-bags and drive “sports cars.”
- NO, being a convertible does not make a car a sport-car.
- Yes the mini is still a glorified golf cart.
- More smart car than mustang.
- I guess I am going to be golfing a lot in the near future.
- I will be playing in a charity tournament… so time to hit some balls.
- Ball jokes in a golf course don’t seem to get old.
- Golf is 90% the people you play with 10% the actual hitting of the balls.
- Yes, I am madly in love with my nurse.
- I had never seen Archer before, DANGER ZONE.
- The nurse and I enjoy watching it quite a bit.
- I have been so busy lately, but good busy.
- The bad busy is almost over.
- I am amazed by how many people just LOVE to be in the middle of drama.
- Really people, it has nothing to do with you directly quit trying to wiggle your way into it.
- Wiggle x3 YEA.
- Chi-Jua-Jua is still funny… so is CONNOR!!!
- That bread was def suspect.
- Oh yea, big corporations, its a douchebag move to not let people say good bye to coworkers when you lay them off.
- Seriously!
- Jdizzle still owes me a list of songs and or bands to listen to.
- I am seriously considering picking up the guitar again.
- I can get a cowboy hat and play country… around a campfire and sh!t.
- Ok maybe not the cowboy part.
- I am more a dog person than a cat person… like 60%-40%
- Did you guys know that Monday night is stripper night in Walmart.
- No lie, there was like 3 different one with about 6 kids each.
- Mallcops are the bomb when they have segways.
- Did you know that a vampire dates guys with mullets. Yeap, I saw it at the mall.
- Also when they reproduce they create a fashion challenged girl, an emo dude and hipster douchbag.
- I could be wrong and they only produced the emo dude, the other two could be friends.
- I got my first “pedi” ever.
- I tried to refuse the Korean lady, but she went all Mama-san on me and I feared for my safety if I said no.
- I swear one of the Korean ladies said “om nom nom nom nom” mid conversation.
- I know a little bit of Korean, but not enough to understand context.
- It looks like I am finally getting an official step Dad. (Mom got engaged! woot)
- Oh yea, I get to see DeGuia soon! I cannot wait.
- I have worked for too many 3 letter companies.
- Almost every single one of the companies I have worked for has 3 letters… except for a couple. NDS-HWS-CSS-AON-CVS.
- I had an awesome weekend… I wish it would have extended to the next weekend.
- I did not know I have Monday off. ROADTRIP!
- I do have some things that I need to take care of.
- Seeing people in pain from a bad back makes you really want to take care of your now.
- I am also very thankful that I stopped smoking and don’t drink all that much.
- I still love bacon though, DAM YOU BACON.
- I loled when during the graduation speech the Valedictorian mispelled the word FAITH… he said F-A-I-H-T … I was not the only one to catch it either.
- Maybe if he had autocorrect.
- With time, the truth always comes out.
- Life is too short to spend time on talking about the past.
- Making memories of us, that is how I want to spend my time.

Left Brain vs Right Brain

» Left Brain:
I am a scientist. A mathematician. I love the familiar. I categorize. I am accurate. Linear. Analytical. Strategic. I am practical. Always in control. A masters of words and language. Realistic. I calculate equations and play with numbers. I am order. I am logic. I know exactly who I am.

» Right Brain:
I am creativity. A free spirit. I am passion. Yearning. Sensuality. I am the sound of roaring laughter. I am taste. The feeling of sand beneath bare feet. I am movement. Vivid colors. I am the urge to paint on empty canvas. I am boundless imagination. Art. Poetry. I sense. I feel. I am everything I wanted to be.

Do you have a dominant side to your brain or do you have a good mix of both? I feel there is always one side which stands out for everyone. The funny thing is that even though I went into a very left brain field and can swim in it all day, my personality leans more towards the right brain.

What about you?

Chi-Jua-Jua

- Still stuck on inside jokes.
- That and I am dating a nurse. Hello Nurse!
- Until about a month I had taken maybe 3 naps.
- Since I have taken about a dozen.
- I can still function well on 3 hours sleep.
- It is pretty nice to be able to wake up at 7 AM.
- My uncle is getting worse.
- I am starting to dislike his wife more and more each day.
- When the head enters the sand to ignore reality it also block hope.
- “Punishing” someone already in their death bed is not just cruel, it should be criminal.
- I have the love of more mothers than it should be legal.
- Say it with me, Chi-Jua-Jua like a military chant.
- Remember the movie UP? now instead of squirrel say CHODE!
- I will wait until you go to google.
- CHODE > D-Bag
- Golf is in my future, like lots of it.
- I love sushi and also the train that carries it.
- I got to grill a little bit this weekend, looking forward to more grilling.
- Good vibes, yeap, good vibes.
- Sometimes what you ask for is not want you need.
- Sometimes what you need is not what you want.
- Its good to be wanted, specially when you are not needed.
- I miss hard rock and heavy metal, I think I am going to have a love affair with it again.
- Wiggle x3 YEAH!
- Music does not just get me through the day, it gets me through life.
- I might check Japan out of my bucket list sooner rather than later.
- Then there is the whole not wanting to be a human glow stick problem, so it might be later.
- Tomorrow my future step father is getting surgery.
- I am looking forward to that wedding.
- They have been together for years.
- When you know, you know.

A boy named Sophie

- Actually not a boy, an actual gender bending cat.
- Not his fault he was sexed incorrectly really.
- Nope the title has nothing to do with anything.
- Inside jokes can still be funny to outsiders.
- A person’s name was mispronounced for almost a month and it sounded like Fabio.
- The actual name was not even close.
- Don’t you love multi/city multi/hour meetings?
- Someone used the word “googlish” meaning like google in the meeting.
- It amused me greatly.
- Hand-holding awesome in personal situations, infuriating when it comes to business process.
- It is comforting to see meetings be cancelled as soon as I schedule a day off, not that it means that I am the only one that actually works.
- My mood elevator is broken, its more like a green room now.
- What is up with tree hugging doctors, light healing just does not cut it.
- I actually got a workout in this week, not sure if it will see a repeat.
- I want warm weather, not humidity!
- Talking about God with atheist is amusing.
- Work would be so much better if I could play bullshit bingo.
- I also created a new meeting drinking game.
- I do Starbucks shots every time I hear “Synergy or -Like, You know”
- My internal messenger status is “I’m still alive.”
- Have you heard Cake’s version of “I Will Survive”?
- Pretty fly for a brown guy does not sound funny.
- Pretty fly for a beaner does not either.
- I love beans, so beaner works.
- Oh yea, Colombians are now known for good looking prostitutes! Thanks Secret Service.
- 49 bucks for a handy… that is so “Money”
- You have to do p90x to get the – so “Money” joke.
- See now you are almost IN the know.
- Are we there yet?

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