I said I do and I meant it

---

It's been an adventurous month with three trips to the Emergency Room with my wife in the clutches of a life threatening Myasthenia Gravis Crisis. It's like watching a loved one drowning, gasping for air.  The last incident found us on the living room floor together with her face pale, lips turning blue and eyes rolling back in her head while I'm trying to resuscitate her. She regained consciousness and faded again and further efforts brought her back again.

It was an incredible adrenaline rush and I beat the emergency squad to the hospital by 12 minutes. It has also turned out to be quite a bonding event. She's extremely thankful and appreciative and I know she'd do the same for me. We live by appreciate and reciprocate. I told her she'd have to fight harder than that to get away from me.

It reminds me of a scene from one of my favorite movies, The Matrix, in which Neo saves Trinity.

Please take a moment to watch this video clip.

To me, the bullet that hits Trinity is the disease of Myasthenia Gravis trying to take the life of my wife and on my watch it's going to face a battle with me. It may weaken her but it's got more than her to contend with.

She is indeed an MG Warrior 

and we're thankful for the team of Dr's helping in their areas of expertise, the many friends who've offered help and kindnesses along the way. The various medications and finally making it to the best MG Clinic in the country at Duke University has brought a psychological victory that is relieving symptoms immediately. There's light at the end of the tunnel.

I've been in a state of hypervigilance for Anita's every breath, every swallow. I'm feeling I can relax a bit. We're learning the signs and symptoms of when to slow down and that there will be good and bad days.

But together we'll make it to a new normal. 

A reasonable quality of life.

---

On a personal note, I looked in the mirror last night after washing my face and for the first time in decades, I appreciated what I saw. I feel like I'm seeing what I've wanted to be. I feel like I was tested and I've demonstrated my mettle. It feels good.

met·tle

ˈmedl/

noun

1. a person's ability to cope well with difficulties or to face a demanding situation in a spirited and resilient way.

   
   

   "the team showed their true mettle in the second half"

   
   

   synonyms:

   spirit, fortitude, strength of character, moral fiber, steel, determination, resolve, resolution, backbone, grit, true grit, courage, courageousness, bravery, valor, fearlessness, daring; ---

I said "I DO" and I meant it. In the good times and bad. In sickness and health, for richer for poorer. I was absolutely euphoric when the Pastor said I present you newlyweds David and Anita.

I'd sleep on the floor like a dog next to Anita with one ear open for her breathing and one eye open for anything that can harm her. I can't find sufficient words to describe all that she is to me.
I know how she was feeling when we met and I know how she feels now and that, makes me feel successful and happy in a healthy way.

---

Does Love Know No Bounds?

---

I've blogged previously about all you need is love. I've long questioned what is TRUTH?
Anita and I are going through a tumultuous storm that life has thrown at us and I will neither blame a deity for the disaster that Myasthenia Gravis is or thank a deity for the progress made with the treatments endured. I trust in science.

Ahhh but Love... Love is the answer regardless of the final outcome. 

I have found, within me, strength to endure and serve the one that I love more than any other ever, with all I have to give.

I have the ability to catch a second wind. I have to ability to go sleepless and press on. I have the ability and the duty to do everything possible to make Anita's life the best it can possibly be.

We learned a lot during a week's stay in the hospital. We questioned everything and were often frustrated when we didn't get satisfactory answers if an answer at all. There is nothing more frustrating than seeing a loved one suffer. You want immediate relief to their suffering and your own anguish.

Here we are, please fix this and do it now!

In hind sight, a lot of it is understandable. It just wasn't easy to endure the eye of the storm.

Love wants to take the pain and suffering from the loved one enduring it and cast it upon our self.

I may not believe in deities and despise organized religion, but in my experience with it, I feel that it was a stepping stone to a higher place.  Some have remarked I must have never truly known the love of their savior.  What I've known and retained is that I was led to it to be set free from it. And the single most significant issue at it's core is love.

Not grace.

That would require accepting guilt and shame for being born human.

And that love can indeed conquer all.
That love is the answer.
That love seeks not it's own, is kind and self sacrificing.

Though love is perfect, our ego tends to over do it and often hinder the desired result. Like a hovering parent. Or like me... food is one of my love languages and if you leave it to me, rather than just satiate you, I'll subject you to a possibility of diabetes, high blood pressure, obesity or worse.

Mature love knows bounds. Mindless love knows no bounds. I could easily do nearly everything for Anita and slow her recovery. I'd literally spoon feed her and then carry her to the bathroom if she needed it or allowed me to. (BTW, it's amazing how quick she can move without a cane when she's gotta go!)

It's a journey, this thing we call life and the best years of my nearly sixty years have been since I met Anita.  Two months ago we were traipsing around the streets of the French Quarter with good friends. Today we battle circumstances you'd never wish upon anyone.

Love will give us the strength to endure. Love will draw us closer than ever amid the chaos. Love will win irregardless of the distance or the outcome.

Thank you love. Thank you for encouraging people to have passion to find solutions to what makes people suffer.

I've said it before and I'll say it forever, "Anita is the most wonderful person I've ever known." That sparks the desire in me, the love in me to be all I can be and do all I can do, to make her life experience better.

I'll succeed at knowing I matter and made a difference for the better, in my life because of the boundless love and bound love I have for her.

The road less traveled

--
 Here we are venturing down a road we'd not seen before and thus far it's quite an adventure. We made a new frenemy who at times is kind and at others is downright rude. Myasthenia Gravis can be rude, crude and socially unacceptable.


Myasthenia gravis is a chronic autoimmune neuromuscular disease characterized by varying degrees of weakness of the skeletal (voluntary) muscles of the body. The name myasthenia gravis, which is Latin and Greek in origin, literally means "grave muscle weakness."

---

This is from a posted comment to a video by an MG patient online.

Myasthenia Gravis is a lot of things but one thing it is not is a "mind over matter" disease. It is a disease that will bless you and mock you. It's your constant companion. Sometimes your companion will be blessedly quiet and sometimes your companion will be like that Facebook stalker that doesn't know the meaning of "leave me alone!!".

MG, like all autoimmune disease, is not a mountain to be conquered by willpower but to be studied and respected for what it can be and understood for what it is in your own life. For some, MG will be a mild hindrance to push beyond. For others, it will be a constant enemy. Denying what MG is or can be only serves to perpetuate a stigma that shames and silences it's sufferers into isolation and defeat, the very opposite of its positive attempt. It is very possible that your reality looks very different from someone else's. Be careful that your attempt to be prodigious in positive thinking about a very real and harmful disease does not quell someone else's very desperate need to find a place to reconcile themselves to their new and extremely frightening reality.

MG will be many things to many people and that is wondrous in and of itself but it should never be placed in this box of "things to conquer" as if sheer willpower is enough to weaken its grip. Yes, it is essential to survival and our thriving to understand that the power of our thoughts holds a great key in the success or failure of our fight. However, it is not the only key and it begs to be used correctly. So be careful to give MG its due respect and never assume that someone's effort (physically, mentally, emotionally) is an implication of their outcome.

--

So we've been busy researching the unknown to find some kind of calm amid the fear of the unknown. What to expect. All of life from diet, exercise, medications, alcohol, mental outlook, sex, relationships, vacations etc is affected. It's a snowflake disease that affects each one afflicted differently to varying degrees.

A new norm is being sought and found. Each new hurdle is a challenge we tackle together. Some of the mental gymnastics we tackle alone from our different perspectives of having the ailment and caring for someone with the ailment. But we communicate openly and directly about all things.

A love letter I wrote on 11/08/2017

If corporations cut down all the forests of the earth and our supply of oxygen was soon gone, I'd remember all the breaths I had with you and all the times just looking at you, watching you move the way you do, how it took my breath away, realizing that I matter as much to you, as you do to me.

You've filled my heart with the most satisfying feelings that I cannot escape, no matter how bad I try to feel about something happening in this world or an uninvited but too often entertained inheritance.

You're the rock, the anchor, my soft place to land, where my heart returns to from gusts on high.

You're the one that makes every heightened experience lacking, all it can and should be, until it is shared with you. 

I'm thankful for the breaths you take, the breaths I'm given from the forests and mostly for the breaths we share.

---

* I want to make a note here to remind readers of the profile info on this blog. It is my perspective, my living out loud. It represents nothing else.

MG-1 It's all between the ears

---

You may say I'm a dreamer,
But I'm not the only one...

So the song begins...

I'm comforted by my lack of a deity to reach out to. Between my ears, deities don't exist. I don't need one for hope. I can hope all on my own. I don't need one for help, it's all up to me. It's not too much of a load to bear. I am the one set of footprints in the sand. 

As Todd Rundgren sings, "Love is the answer." 
The Beatles sing, "Love, love, love, all you need is love."

Maybe your idea of a deity is love. I don't believe we need a deity to give or receive love. To be kind. To help others.

Life happens and in the blink of an eye it can change as significantly as the appearance of a room with the flip of a light switch. In either direction. I've experienced both.

Each day is a decision. My eldest brother once wisely told me, "life is choices and prices. The older you get the fewer the choices and the higher the prices." 

We merely need to make the decision to act or not. To love or not. To help or not. No rewards lying in forever-land. Nothing beyond discovering that every challenge we face affords us the opportunity to respond or not. To rise to the occasion or to shrink away with why me, self pity and shaking a fist at a make believe deity.

I find comfort in being an atheist. 

My wife, the most wonderful human being I've ever known has been diagnosed with Masthenia Gravis. It's incurable and debilitating symptoms fluctuate. We hope for periods of remission.

Life happens. We'll roll with it and our love will find a way to a new normal for us. 

A closer us. 

Something I didn't know was possible.

For all I've been blessed with in my life
There was an emptiness in me
I was imprisoned by the power of gold
With one kind touch you set me free

let the world stop turning

Let the sun stop burning

Let them tell me love is not worth goin' through

If it all falls apart

I will know deep in my heart

The only dream that mattered had come true

In this life I was loved by you.

The Essence of Us

--

I'm going to a wedding soon and I find myself particularly excited about this one. I've been to weddings before but this one is different. Not like a theme wedding where everyone wears Star Wars or Star Trek outfits. No, this one will be my first and I hope not my last, same sex couple wedding. Squeeee!

This couple has been together for 15 years waiting for their state to provide the Equal Opportunity that everybody should have had from the beginning of this nation. I'm glad we've evolved as a nation and that I too see things differently than I did before. But this couple just makes you happy to be a couple too. They're a delight to be around and I'm over joyed and honored that we're invited. Their essence is a beautiful thing to experience. You know that they were just meant to be.

It led me to think back to Anita and my early days. Learning about each other and becoming us. We had many similarities and enough differences to keep us growing. Acting out of our damage as most of us often do, we found the pieces of the puzzle to become more than just healthy individually but developed a dynamic as a couple, an us that makes me flutter. This sparked a memory I'd not shared before and I'm surprised because I've loved to tell the sequences in our love story. 

We're currently preparing to receive lot's of family and friends for July 4th. An annual event at our place. It's the season for our home to be a bed and breakfast, so to speak. We entertain, we accommodate, we host friends overnight from near and far. We invite neighbors for cookouts. We enjoy all of it.

So I thought, what is our essence? And this memory came right to the forefront. Waving it's hand like a grade-schooler who knows the answer to the math on the flash card. Me, Me , Meee!!! 

---
On our honeymoon, we took a flight from Oahu to the Big Island of Hawaii. We wanted to do a helicopter ride over the volcano and drive around the island and go up to the observatory. Many of the things I got to experience when I spent four years stationed in Hawaii. One day, with no specific agenda, we strolled around in the city of Hilo. After breakfast with wonderful views of the ocean and far off mountains, we walked around,  shopped a bit and took some photos in a seaside park. Soon after we happened upon a glowingly tanned Hawaiian woman, sitting on the sidewalk in a not too clean dress, who was playing an ukulele and singing a song with a joyous look on her face. There were no other street performers around and she didn't have a bucket or instrument case out for tips. She was just there, looking at folks and singing with a smile. She was radiating joy to say the least, I had to engage.

Her name was Grace and she was sometimes homeless and beyond the joy was someone who might have had some mental issues but chose hope over despair and joy over sadness. An older tall gentleman with a white beard happened upon us and Grace acknowledged Paul, having seen him around but not overly familiar. The conversation was candid and fun and it was lunch time, so Anita and I invited them to join us at a nearby restaurant.

We had an absolute ball. Breaking bread and learning about one another. We took some photos and exchanged personal info. I remember them.

It was a pleasurable experience and that, that is, the essence of us.

We like to share the experience, with others. 

Swan Song

---
I have no productive thoughts...

Yesterday I found a similar pain, so severe that'd I'd experienced it only once before and oddly or maybe appropriately, 35 years later, it has the same source.

Words like betrayal and deception pervade and dominate my thoughts. They cut deep, beyond flesh or tissue or bone type pain, to my core. My very being is disturbed, unsettled, ill-at-ease.

All organisms seek to survive. To continue their existence and as Maslow's Hierarchy so accurately points out, we as a specie seek comfort in our surroundings and preferably until it permeates our core, our very being. Though the struggle, the challenges may aid in our growth along the way, we yearn, we seek peace, within and all about.

Trust is a word that if it were an element on the periodic table of human interactions, might possibly be the heaviest of all needs in successful, healthy relationships.

What is one to surmise of humanity. That it is good? In hope with optimism that good exists in all? Or that self service is the more dominant trait?

What is it truly that experience of life, the journey teaches us? That in the most basic of instincts, through survival we get ours and to hell with the rest.

We choose to focus on one or the other and approach all others with the attitude each provides.

Words, words dance around in thoughts, some productive, some destructive. who or what is in control of these words and their effect?

We each bear the responsibility for the energy we bring into a room. It is my hope that my swan song, my legacy to have brought a positive light into the darkness that we all entertain too often. I choose optimism as the best survival tactic in the best interest of self and society.

My experience teaches me that writing is the most therapeutic thing and in doing so I am finding myself able to choose productive thoughts. That at my core, in my innermost being, there is hope and optimism that outweighs the darkness and negativity that seeks to survive, dominate and produce it's effect on self and others.

Grant me the Serenity to accept the things I cannot change,
the Courage to change the things I can,
and the Wisdom to know the difference.

Broken Dreams

---

I awoke from a dream and hours later I'm still pondering all it alludes to. I don't dream every night or what I'd consider often, but when I do they're vivid and have profound meaning. In this dream...

I was married to my young sweetheart and we wanted kids. We weren't so fortunate early on and it took it's toll on our lives individually and on the marriage. If nothing else, all she ever wanted was to be a Mother. And me, I wanted to be happy and definitely reproduce.

I was 47, she was 45 and we were finally blessed with a son. We soon discovered that our one and only was deaf and blind and unable to speak beyond elated or terror filled shrieks. I felt confused, my prayers betrayed, somehow punished, like Job, but I clung to all that was good and we learned braille and to sign in the palm of each others hands. It was more than 24/7. It was learning to live an entirely different existence. For her, it seemed to come natural initially. It was beautiful to observe. They bonded beyond my ability, while I headed out the door most days to work and provide.

We both were so focused on him and his needs, all we had left at the end of the day was restless sleep at best. There was no us. It took it's toll on her. In my absence she'd grown weary and frustrated and resorted to wine and pills. She hid this amazingly well. I was oblivious, until...

In a black out, she passed out on the couch and in his free reign of the place, he turned on the stove. Fortunately it did not ignite and the Carbon Monoxide detector went off and automatically alerted the Fire/Police departments and me at work. She admitted her problem and went to rehab. I installed cameras and my Boss, Co-workers and friends in our condo building helped with Junior.
It was a struggle to say the least but I became hyper vigilant. This was my one and only and failure just wasn't going to happen on my watch. Every conceivable safety device and system was in place. Overlapping fail safes. Accountability and the absolute best people involved I could ever imagine that truly cared.

She came home, I was concerned about relapse, kept her under my thumb, hovered like a hawk and had people drop by in my absence. In her mothering nature and with the joy in his life, having stepped out here and there I finally relaxed enough to take a break, feeling confident all was in the past and would be well.

Away on a business outing, tragedy struck. I came home to sirens and smoke and people in the street. A fire on the 7th floor. She was brought out on a gurney, smokey ash on her face. Where's Junior?  I was restrained.

In the days that followed, there were two theories that came out. One suggested that she relapsed and after the most amazing evening with him of dinner and play, she passed out, again. And with free reign he turned on the stove and this time it ignited. In fear for what he could not see but could smell and feel he escaped onto our balcony. When the flames sought the rich oxygen and the drapes became engulfed, he had no where to go but jump, into the abyss.


The other and the one proof was provided of, was that the video from the cameras I'd installed revealed that they had the best evening ever. Full of play and as was her nature to understand the child that came from her, she wore a blind fold and ear plugs. After eating they played with the sensory panel full of knobs and bolts and various textures that had been made by a friend who had an autistic child. They sat in the living room floor communicating and loving on each other as they rolled and tumbled and fell onto the pillows that surrounded them like a corral.

She carried him to bed, wore out from all the play. She hadn't tied him down. The image of him resting peacefully, un-tethered to was too good not to savor, if even for just a bit. He often had what appeared to be terrible dreams. To watch him endure them while tied down seemed unjust, too much to bear. All seemed right with the world. She went to the kitchen and poured a glass of wine, walked onto the balcony to reflect and celebrate a full circle, the cycle of life, feeling like the mother she always wanted to be. Having not consumed alcohol in a long time, she soon rested her eyes on the couch before planning to get up and clean up, finish tucking him in and go to bed herself.

He got out of bed, ventured into the kitchen and turned the knobs on the stove, this time igniting...


She didn't recover. She blamed herself. She was committed to an asylum, where she bit her tongue off and gouged her eyes out and jammed pencils in her ears destroying her eardrums.

She now lays in her bed, strapped down suffering from horrible dreams... broken dreams.

My son is dead, I can't communicate with her. I've moved on, I forgive her.