What Fear Really Is…

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Rogue and contagious, like a virus it spreads foolishness and mayhem…

An enemy of constructive thought, fed by ignorance and falsehoods…

A motivating factor in bigotry, isolation, hate and despair…

Detrimental and poisonous, it seeps into society like a noxious invisible gas…

It confuses kindness for weakness and strength for brutality…

A feeling meant to warn of danger, instead manipulated by dictators and devils alike…

Destructive when not handled with care, like dynamite it will explode…

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The Illusion

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The deceiving impression that something unbelievable is real. 

A mad delusion in the virtuous belief that life is fair.

The false comfort in the righteous power of control. 

A shaky belief that there is more to triumph than luck. 

An erroneous assumption that acting with valor brings reward. 

The misguided notion that doing the right thing always leads to success. 

A flawed assumption that domination over difficulty will bring ease. 

The mistaken understanding that positive results only come from hard work. 

Grief’s Irony

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It grips like a vice, tight and unyielding, with a crushing force of unbearable pain, but not before it twists our hearts into a knot, forcing them out of rhythm and shattering them into tiny unrecognizable pieces.

While time may produce scabs, there is no such thing as healing or moving on or closure or peace. Once it finds us, we cannot escape it and we are never who we were before it set upon us.

It shows up without warning, without mercy or care to how it reeks havoc in our lives, laughing at our torment like an ugly clown at a freak show circus.

Loud and dark and cold at first, it slowly ebbs into a dull chronic ache, flaring at unpredictable moments of quiet, exploding into a raging white hot hurt that all at once, feels familiar in its wretched agony.

Taught to face it in stages that lead to acceptance, a lie we tell ourselves to cope, as there is not one thing tolerable in the emptiness and sorrow that fills our soul from its presence in our lives.

Yet, it is inescapable. It finds all of us, one way or another and all throughout our lives to varying degrees. We learn to suffer through its misery. The irony being, that without it, we would not know what love truly feels like. We would not know the meaning of life.

Despite its necessary cruelty or perhaps because of it, we would not have the benefit of understanding what we have because in a nasty twist of fate, we must lose it to have the fullest knowledge of its gifts.

It is the loneliest experience in life and the hardest part of love.

Finding Balance…The Hard Way

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If you regularly read my blog, then you know that I chipped my tooth last week fighting with the vacuum cleaner hose. If you don’t regularly follow my blog, now you know, but what you might not know, is that I also had an ensuing melt down.

I’ve been thinking a lot about the entire incident and I’ve come to a few conclusions. The first, I already wrote about…that I need to learn to slow down and walk away when something is frustrating me.

But there were actually a lot of lessons to be learned from my battle with the vacuum and one of the most enlightening for me is that I too often find myself having to learn things the hard way. Apparently, I am a master at denial. I am quite good at swallowing negative emotions and pushing them into dark corners.

The problem with being so good at this is that the feelings don’t go away, not really. I’ve only hidden them. So, eventually I run out of dark corners to put them in and BOOM! They come rushing out and smack me. In the case of the vacuum cleaner hose, quite literally.

I think to face the demons of living with a chronic condition every day would be impossible. Sometimes, I think it IS healthy to push away the fears and physical pain and just try to live and to live as normally as possible. But, if there is something that my recent melt down taught me while I sat in the dentist’s chair yesterday getting my tooth repaired, it is this…there must be balance.

I need to learn how to better manage the complex emotional baggage that comes with a life with sarcoidosis, so that I don’t actually have to physically hurt myself to recognize the pain I am in. I want to stop learning things the hard way.

It’s okay to be strong but I am learning that a big part of strength is also making room for fears, doubts, sadness and uncertainty and that perhaps real strength comes not from denying these emotions, but from recognizing them and then accepting them for what they are.

I am afraid. It is hard to live with the every day ups and downs and uncertainties of this disease. It does make me sad and I do doubt myself now. I question who I have become sometimes. I don’t know how I couldn’t. I don’t let this disease define me but it has changed me. I must accept that this is my journey. I cannot deny it. It is part of me.

So, today I acknowledge that there are dark corners of hidden emotion. Today I accept that my fears and weakness are also my strength. Today I will embrace the unknown and face my doubt with certainty that, one way or another, it will all be okay.

Today I will accept balance into my life. Today I will let go of denial. I will embrace this journey for all it is intended to be and maybe the lessons will come with a little less pain or at least fewer trips to the dentist.

Until It Happens To You…

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Early in my diagnosis, a whole new world was opened to me and I found myself lost and struggling to leave it. I wanted what I thought was “normal” back. I didn’t like what was happening to my body, or my mind for that matter. The world that opened to me was terrifying and lonely. It was the world of the unwell, the chronically challenged, the forever changed.

There were a lot of things about being new to this world that were difficult, but one of the hardest was learning to use language that best helped me communicate my experience to those who were still living in the world of the well. Because, when you live in the world of the well, you have no idea what it’s like on the other side.

You can be sympathetic. You can be kind. But, you cannot understand this strange and other worldly place.

What I know now is that until it happens to you, you’re not really meant to understand it. You’re not meant to understand the happenings in this bizarre world of invisible illness. You see, because that’s the thing, we look just like you. We even act like you but we are most certainly not you.

We are creatures unto ourselves, living in a secret world of unseen seething physical pain. We hide it and we hide it well. We do this for you. We don’t want to make you uncomfortable because we know you cannot communicate with us when we do. So, we do our best to look good and speak of happy things.

We strive for what you call normal, knowing that even at our best we fall just a little bit short. Yet, we know that trying is better for you. It makes you more comfortable with us, with our kind, so we do it no matter how we feel. You don’t appreciate it. You take it for granted. You expect it.

This used to make me angry, infuriate me in fact. Now I just accept it as the social order of things, because what I know now that I didn’t know when I first entered this other world, is that until it happens to you, you don’t just lack understanding of it, you lack respect for its power.

This other world is a very powerful place. It is a place of sickness and pain and sorrow and grief and life altering things. Until it happens to you, you cannot also see the hope in this place. Instead, all you glimpse is the darkness and uncertainty and these are not things of your world.

What I know now is that you are more afraid of the world to which I belong than I could ever be. I am on the other side now. You are not. I am no longer silently tormented by the fear of the unknown. You are.

So until it happens to you, I will respect your lack of understanding. I will not hold it against you. I will put up with your ignorance and inability to communicate. I will do all that I can to make you comfortable so that you don’t have to fear what I know. I will continue to pretend that all is well because this is easier for you. It will always be easier for you.

Until it happens to you…

Thank You Downton Abbey

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Harsh reality is better than false hope any day”

If you’ve never seen this show…it’s worth a look. It’s really quite good. It’s well written, the characters are charming and you come to really care about this family and their household staff.

During this week’s episode someone said “Harsh reality is better than false hope any day.” I thought this was such a powerful quote that I paused the show, picked up my computer, opened up a “daft” page to my blog and wrote it down so I could write about it later.

In all honestly, I’m not sure there is much to add to it. The quote really speaks for itself. It’s the flip side of denial and describes perfectly the pitfall of hope, if there really is such a thing.

Hope is very important. We need it. I am a firm believer in hope. I write about it…a lot! But, false hope is utterly useless. It’s not real and in the long run, trying to survive on it does more harm than good. It only leaves us starving and malnourished.

Striking a balance between reality and hope can sometimes become a challenge but is necessary in order live a reasoned life. False hope won’t get you there but the truth, in whatever form it comes, usually does.