The road less traveled

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 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.

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* 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.