To Laugh…

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To laugh is to understand joy…

To laugh is to feel relief…

To laugh is to make friends…

To laugh is to heal…

To laugh is to become calmed…

To laugh is to find perspective…

To laugh is to experience peace…

To laugh is to live…

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That Little Voice

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It whispers ever so softly, attempting to lull you with it’s gentle tone. It beckons you to quit, to give up and retreat. It makes a compelling argument. After all, the daily struggle is difficult. The mental challenge of forcing yourself to find joy in the face of constant discomfort, in vast uncertainty, drains you to your core. The mask you wear is heavy. The facade you live behind is an exhausting pretense to maintain. There is constant concern the cracks you know are there will begin to show.

You do your best to tune out the siren that calls to you. You fill up your mind with white noise and the business of daily chores. You push and strive and usually you are successful. You don’t respond to that little voice so persistent in its draw. You labor in your efforts to ignore it and want so much to silence it but for all your toiling, the din of it remains, constantly reminding you how easy it would be to give up and abandon your struggle for normalcy.

Letting go, bailing out and cutting your losses seems like such a good option when you feel the depth of your burden, the weight of life in a chronically challenged body. It would be so easy to just stop, to surrender. In weak moments this little voice almost sounds like a lovely song, a lullaby. These are the most difficult moments of life with a disability. These are the moments when you realize at the center of your soul, that you are different and despite all your efforts to maintain life as you once knew it, are a futile attempt to feel okay. In these dark times, you know with profound clarity that you are not okay.

These moments are incredibly painful. These times that hollow you out, are cruel but they are also important because they provide you with a choice. Each time this voice beckons, you have to decide whether to quit or to fight. Without this voice, quitting would seem the only logical choice. But the voice, it gives you something to battle against and strangely, while you hate the voice, you also realize that you need it because it is a measure of your strength and it feeds your will to survive.

The Essence of Illness

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The essence of illness is the deepest of sorrows.

It is the pit of life.

A lonely place. 

A grieving place. 

The essence of illness is the core of uncertainty. 

It is definition of the unknown.

A scary place.

A sacrificing place. 

The essence of illness is the epitome of pain. 

It is the personification of dread. 

A foreboding place.

A disquieting place. 

 

The Story Never Ends…

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“There is no such thing as an ending; just a place where you leave the story.”  – The Second Best Marigold Hotel 

I absolutely loved this quote when I heard it. It got me thinking about life and how it ebbs and flows and that it is really a fluid thing. How each of our lives today, right now, has a lasting impact somewhere else forever and even when we leave the story, this is what allows the story to continue without our physical presence.

Sometimes when I think about leaving the story, I get sad because it means I’ll be leaving those I love the most but, if the legacy I leave is a positive one, if the journey I chose to take was one of compassion and strength and love and peace and kindness, then I will at least leave when my part is over, knowing that I left the story better than I found it.

There is a lasting effect to the life we live on others, on the future and the past. No matter how big or small our life is, what we do with it matters because our journey is a chapter in a much bigger story. The beauty of our life, our individual life, is that we get to write that chapter but whatever we write, whatever we do, sets history and defines what is to come for others, so the example we set is important.

Despite my own sorrow, for what I know I will miss when it’s time for me to leave, there is a comfort in knowing the story goes on without me. There is something hopeful in it, something that keeps me connected despite my obvious absence. Others will carry the story when it is their time and write new chapters and have adventures beyond my wildest dreams. There is a great anticipation in knowing this…that there is more to come and that there always will be.

Right now though, I have a duty. I have a responsibility to review my own chapter, my place in history, because with every life comes the opportunity to take inventory, to examine the example we are setting and if need be, to edit. All I can really hope to do now is to live nicely and love well, so that when it is my time to leave the story, I will be remembered kindly and with grace and that something good will come of what I have left behind.

 

Sometimes Quiet Makes The Most Sense

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I’ve been a little absent with my blog. I’ve been a little MIA in my writing. I’ve been a little blank in my thinking. Sometimes, I feel as though there is nothing new to say, so sometimes I feel like being quiet is the answer. Other times I am blank because my mind lacks motion and I cannot get my thoughts organized.

I’m feeling that way now. My mind is here, there and everywhere but it is also nowhere at all. I have a thought, a brilliant moment of realization and then, it flits away and I realize that it probably wasn’t all that brilliant to begin with or I would have remembered it. Sigh…

So quiet seems the way to be…to try to be still with the mixed up madness in my head. Quiet seems the answer when I feel redundant and somewhat irrelevant. It’s hard feeling irrelevant, disconnected from myself but sometimes this is my reality…a feeling of lost disillusionment with my own mind, a lack of brain power, slowed and sluggish thinking.

Sometimes it seems like quiet is the only thing that restores my broken thoughts, so quiet I shall be..for now.

 

 

The Fatigue Factor

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I’ve discussed the topic of fatigue in my blog before. I’ve even tried to describe it so that those who don’t feel it can better understand it but, it’s a very hard thing to truly understand until your own bones feel crushed under the weight of your very existence. (https://sarcoidsoldier.wordpress.com/2014/07/02/fatigue-monster/)

My pain tolerance is ridiculously high. Most people would be balled up crying in the corner of the room if they felt what I feel every day. Somehow, I have just grown accustom to it though. My pain is like another limp. I expect it be there every morning when I wake up and I have even learned to smile and look good through it…most of the time.

Fatigue on the other hand, is a totally different story for me. Of all my symptoms from sarcoidosis, of which there are many, fatigue is the one I find the hardest to cope with. I have found ways to suppress it at times but nothing stops it. I know my diet makes a difference and getting regular exercise helps, but generally when that real nasty overpowering fatigue wants to set itself into me, nothing and I do mean nothing, can stop it. It’s a fight I simply have not found a way to win.

It’s so insidious that there are times I don’t even see it coming. It creeps its way into my core like a body snatcher and the next thing I know I am filled with a foggy sense of confusion and my body suddenly weights a thousand pounds. I can’t move. I can’t think. I no longer function. I am not of this world while it has a grip on me and I can’t sleep it away because it doesn’t make me tired. Instead, it squeezes me. It flattens me. It physically compresses me. My body becomes thick as mud and hardens like cement.

Fatigue is cunning. It baffles me because it strikes at will…when it wants and where it wants…and it doesn’t care what I am doing because it will always decide when I’m done doing it. Fatigue finishes me. It knocks me down and kicks me while I’m there. It’s only goal is to destroy me. All I can do is wait…wait for it to pass.

I hate it. I just hate it.