I said I do and I meant it

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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.

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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.

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Does Love Know No Bounds?

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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."

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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.

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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

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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.