Sunday, June 19, 2016

Dissection Life: A Father's Day message to My Children

The last teenager is out of the nest now.
Father' Day, Dissection Life Message to His Kids

They are all gone.

Our job was to raise them to where they could fly on their own.

The last one is now a freshman in the university system.

Sure they have a ways to go, however I truly believe they could make it on their own now.

And since today is Father's Day I'm going to send and open letter to my children.  I am putting into words below the thoughts of a Father's heart and dissected aorta.

The theme of my letter to my children is: Disappointment.

June 19, 2016

Re: Disappointment

Dear Children:

There are no more of you in the house and silence is certainly loud.

Take my thoughts in this letter with you the rest of your life.  What I want to tell you is advice I dearly hope you will remember the rest of your years.

I have always, always told you to follow your heart.  I may have let you know my opinion but ultimately I encouraged you, and still do, to follow your heart when making a decision about your life.

Listen to what others say because different perspectives can help guide you through life challenging decisions.  Then follow your heart.

If I could tell you one thing now that I hope you will never forget it would be the following sentence:

Dad says, "It is ok to disappoint others, however never, never disappoint yourself".

Think about it.

Each of you have special talents and very individualized passions.  Your Mom and I always want the best for you, but sometimes the best does not lie in conformance to some traditional way of thinking, politics or spirituality.

Times are changing.  Don't stick your life away in a pre-labeled folder file.

Each of you will encounter opportunities where you could do great things for the world.

Don't ever let anyone or anything hold you back.  If your heart says, 'Yes', ask it once more to make sure then follow with all skill, love and desire.

If you fall, pick yourself up and try again.

But please, please do not repress you heart's passions because of what someone else thinks, or the fear of 'disappointing' someone.

Not that it matters, but the only time I'd be disappointed in you if you were living your life the way someone else thought you should live it.

So.  Disappointment is the word.

Learn to validate your own character by determining who you are going to kindly (Dad says kindly is best) disappoint.

Try carrying an "I am going to disappoint" list in your wallet.  Anytime you feel that old sense of "he or she doesn't approve of what I want to do or am doing', add the name of the disappointed person to your list.  Write down the reason why and how you feel.

Sleep on this.

Then go ahead and disappoint them by doing what your heart is telling you to do.

This isn't easy for a father to say.  I always think I know best.

But one thing aortic dissection life has taught me is "life is so short'.

Always, always follow your heart and don't look back.

As Billy Joel said, "You can get what you want, or you can just get old."

Kindly disappointing people is part of the journey.  Just make sure it's others who are disappointed, not you.

Love you, Dad.

Friday, June 17, 2016

Aortic Dissection and Gratitude

Its taken a lot of generations of my ancestors to produce me. Last night I was thinking of how much I appreciate all their unspoken-of struggles over the centuries and millennia .
I appreciate how many endured dissections and aneurysms probably just like I did (dissection in our family is genetic - my mom had the same aorta replacement as I), and they adventured on. Since aorta replacement has only been around for the past thirty years of so - many of my ancestors endured and survived without medical repair.
I'm sure many times some of my ancestors wondered what was happening to them, not having community support as we do today. Many got up in the morning, went to work and despite the challenges of a weakened cardiovascular system, did what they could do, despite limited knowledge of their condition and limited medical treatment availability.
The challenges our ancestors faced were enormous. Everyday they had to completely create commerce, food, shelter, protection and family. Many did not have even a small portion of the medical care, shelter, transportation or luxury available to me.
Yet our ancestors all had one thing in common and that was they were "Survivors".
And they adventured on long enough to pass those survivor genes on to us.
Today I am grateful for all their struggles, challenges and perseverance to make sure we too could be survivors.
Today, I am Grateful to them.

Tuesday, June 14, 2016

Dissection Life, Best To Read The Ingredients Before Drinking

Everything about #Dissection life is a learning process. Several times members here have posted about 'probiotics' being important to an '#Aorta Healthy" lifestyle and I am convinced its true.
Added caffeine in kombucha? #Dissection life
Always read the fine print ingredients #Dissection life

YIKES! I stopped in the grocer today to pick up some fresh ginger root for smoothies and purchased a Kombucha (ginger flavored). I thought I was being healthy.
Arriving home I laid down for my self-imposed every two hour leg elevation and drank the entire bottle, even though vinegar based drinks are kinda hard for me to swallow. After all - the more bitter the more better.  
So within ten minutes PACs and arrhythmias began. Now my heart and aorta hurts. I've been off caffeine for about six months now after reviewing the bottle I discovered this drink had 80 mg caffeine. Probably not much for most, but for a  #Dissection life adventurer, a no-no and enough to send me into PACs.  
OK I should read the label, even the fine print. The label read "Gluten free, Non-Dairy, Vegan". But I should never assume anything...  
The answer just now? Drink lots of water and meditate to calm my racing out of sync heart.  
Still learning all about this #Dissection life.

Sunday, June 12, 2016

Ablutophobia and Aorta Dissection

I've suffered from Ablutophobia ever since my dissection. Ablauta-who? Until this afternoon I didn't even know the appropriate term. I just knew ever since my dissection I've had this big and reluctant fear of taking showers.
From that first hospital shower post-dissection, where I was seemingly locked into a claustrophobic glass enclosure and left to my own panic attack over tubes and wounds getting wet, along with quasi-vertigo and my own weak state of being, I have been hesitant to get in the shower and always relieved, even today, when I can step out.
Since I shave in the shower, my shaving has become more infrequent. I look around, fearful of what could happen.
Now I am a neat-freak too. So I force myself to daily shower. But it freaks me out.
So I was really relieved to read that there is actually a phobia named for people who fear showers and I was relieved to find out PTSD events can be the cause of Ablautaphobia. 
So I am not alone about fearing showers.
Not that it is a big deal. Its just another moment of enlightenment - like when I was DXed with Marfan - that explains much of this ‪#‎Dissection‬life.

Monday, June 6, 2016

Connective Tissue Life Doors and a World Market Pottery Mug

Dissection Life has opened and closed many doors in my life.  One maxim I've found to be unchangeable is 'There Will Always Be Change".
Ritual simplification to celebrate life's changes.  Buy a mug and bowl from World Market.

One particular project I've been working on is simplification.  Indeed, before I was diagnosed with a connective tissue disorder and the big dissection I had accumulated quite a bit in life.  Too much to take care of.  Way too much to take care of.  Of course, I was usually stressed about all the worldly possessions I was carrying around in my 'life backpack'.

When I began the simplification process several years ago a sense of new found freedom immediately swept over me.  This was good.  Stress causes inflammation.  That is bad.  Inflammation can chip away at our aorta until it finally tears.

Last thing I needed was anything chipping away at my genetically pre-disposed to tearing Marfan aorta.

Lifestyle simplification is a disposal of both things and also stress.

Ultimately my goal is to own only one hundred objects.  However even then one hundred objects can be a lot to take care of.

So with each new door of change I encounter on this #DissectionLife journey, there exists an opportunity to simplify even further.  Simplification during change also dulls the emotional pain sometimes associated with big life changes because the act of simplifying affords a level of distraction from the possibly negative change event to the positive results from simplification.

That last sentence was a mouthful and probably could use some simplification itself.

I am really proud of Ruairi's summa cum laude standing upon high school graduation.  He is now off on his own life's journey after Saturday graduation and a successful Sunday drive to the University of North Florida.

He even was awarded a Tommy Tant scholarship as one of his many scholarships.  Tommy Tant Memorial Classic is a surfing event each year in Flagler Beach, Florida to remember Tommy Tant who passed of an aortic aneurysm.

Another door.  The house is not any more quiet, I just know now he is not coming home each afternoon after school or basketball.

For me, embracing each new life change with a celebratory act helps afford validity to the particular change.  So yesterday I went to World Market and bought a new pottery bowl and mug that will become my kitchen utensils for eating.

With no children in the house I am hoping we find the sink less full of dishes.  Now, with my one bowl and one mug, I intend to keep them washed and on the shelf after each use, and out of the sink.

So two of my one hundred personal items are made up of a dark blue World Market pottery bowl and matching mug.  Ruairi has left the house.  One door has closed and another door opened.

Nothing earth shattering but another couple steps towards the Zen I find in simplification. And that is good for my existing medically managed dissection.

One thing #Dissectionlife has taught me though is all those little steps add up.

And anointing each change with a separate act of celebratory simplification makes the journey easier and more interesting.

You can find out more about my Project 100 here.