Taming the Beast Inside Me

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What is it that I should write about, I ask myself? I don’t know echoes the answer in my vacant head as the curser blinks on a blank page of regretful emptiness. If I write about not knowing what to write about, will it clear my mixed up mess of a brain? Given my current state of mind, considering the answer, I’ve come to a conclusion of doubt and resistance. I am angry that words defy me today. I am frustrated by my lack of imagination. Where has my sense of artistry gone and why has it left me abandoned and alone?

My blog is supposed to provide comfort to the chronically ill but in truth, I’m tired of being chronically ill. I’m tired of pushing down the endlessly dreary feeling that my life has come to nothingness. I think I’ve lost my sense of moral outrage that my body has betrayed me. This is my new normal and I fear that I have come to accept it as such. I am broken. I am defeated and I am beaten. Sarcoidosis has subdued my purpose and stolen my determination to continue the fight against the intolerable fact that I am not who I once was or who I want to be.

Sometimes my sarcoidosis feels bigger than I am, like a giant ogre ready to oppress and slay me into submission, taking what little will I have left and devouring it as only a monster can do, striping me of hope and purpose. Sometimes it feels like because sarcoidosis changed my life so dramatically, it has ransacked my identity, my passion and my drive. I don’t know who I am some days other than a person with a chronic disease, forgotten by the rest of the world, left in quiet isolation to wilt and wither away.

I know my disease is not who I am. I know these feelings are only temporary moments of insecurity, brought on by a body changed through disease and a life altered by unwelcome illness. I know that I am more than my sarcoidosis. Though I don’t yet know how, I am convinced that I can tame these beastly feelings inside me because, my spirit may be shaken but it is mighty. I know in the depth of my soul that I am tenacious and whatever demons try to slay my animation will ultimately be beaten. So these heavy feelings I am experiencing, while they impede my ability and even my desire to write for now, they will not cripple me forever and they will not permanently change my want for hopefulness or my inclination to seek joy. I will find my passion once again and words will defy me no longer.

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I’ll Be Back!

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I’ve been lazy…

I’ve been blank…

I’ve been empty…

I’ve been absent…

I’ve been void…

I’ve been tired…

I’ve been hot..

I’ve been blocked…

I’ve been gone…

I’ll be back! 

Plagiarism And Sarcoidosis – An Analogy

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I recently found out that someone took one of my blog posts and posted it on Facebook. She did not share the post. She copied and pasted it with quote marks around it. She did not cite where the words came from. She did this in a sarcoidosis support group on Facebook that I don’t belong to. Someone I know does, though, and let me know. At first I had hoped it was simple ignorance but, after finding out that the poster allowed people to make complimentary remarks about the post as if taking credit for it, I realized that this was actually pretty blatant. In addition, just about everyone on Facebook knows how to use the “share” feature, and this feature is designed not only to spread ideas but to credit the original poster…often the author. There is no excuse for copying and pasting something and not citing where it came from. Plagiarism is theft. My words were stolen.

I was pretty disappointed by this, of course. I receive a lot of positive feedback about my writing from fellow sarcoidosis soldiers, people who tell me that I am able to put in words what they think and feel, making them feel less alone. I am more than happy to share my work. I am more than happy to have my words shared by others so long as it is shared properly. My writing is a labor of love. I do it for myself, but I continue to doing it, in part, to keep helping others. It’s important to know you are not alone when you have a chronic condition.

This ridiculous act of out and out thievery made my husband take notice of the similarities between plagiarism and sarcoidosis so, I must credit him for the idea behind this post. See…it’s just not that hard to give credit where it is due. Plagiarism is defined as “the practice of taking someone else’s work or ideas and passing them off as one’s own.” Sarcoidosis takes our immune system and makes it its own. It takes over and takes undue credit for healing us when in fact, all the disease is doing is causing harm.

Plagiarism is harmful. It keeps people from thinking for themselves. It stifles ideas and it diminishes the value of the original work. There is nothing flattering about plagiarism. It is a violation of the creator’s identity. Sarcoidosis is also harmful. It seeps into our body under false pretenses, attempting to heal some real, or in many cases, imaginary threat to our bodies. As it takes over our immune system, it steals our body’s ability to heal us. There is nothing flattering about sarcoidosis. It robs us of our lives. It is a violation of our health and of our physical and emotional well being.

In these days the of modern social media, theft of ideas has become easier with access to information right at our fingertips twenty four hours a day, all over the world…all the time. We are so quick to believe the first thing we read on the internet without bothering to check the source. In some ways it seems like people just don’t care where information comes from anymore, and for artists of all sorts, who pour themselves into their work, this is quite disheartening. In the days of modern medicine, diseases that can save insurance companies the most money and bring in the biggest dollars for pharmaceutical companies are all the rage. Every other lesser heard of, dare I say rare, disease is left to flourish basically unchecked because little research is done on them. Sarcoidosis is one of those diseases and flourish it does in the bodies of those of us with it. And, just like with plagiarism online, little is done to stop it. As it turns out, there are a lot of similarities between plagiarism and sarcoidosis. Both are frauds, hoping never to get caught, both steal without care of the cause or consequence and both diminish the original in some form or another.

I don’t mind if people want to share my posts. I am happy if my words bring comfort and meaning to those in need. I also understand the risks and challenges of posting these words on social media. The fact that my words were taken so freely and with so little regard by someone who shares the same disease as me though, is a slap in the face because as we all already know this disease takes so much as it is. So, please feel free to share my words if they are meaningful to you, just share them ethically because this disease has already stolen enough from me.

500 Posts

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A milestone…

A lot of words…perhaps too many…

Thoughts and ideas of many sorts…

Always evolving…

A search for meaning…

A few political ramblings…

Vegan recipes…

Views on love…

Relationships explored…

Hopefully hopeful…Always honest…

A journey through illness…

A search for happiness…

Likes and followers…

Comments and encouragement…given and received…

Impressions of time…

A diary of sorts…

A life chronicled…

500 posts…

Thank you dear readers…for indulging my words and observations…

Just Write…

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Sometimes I just don’t know what to write. Sometimes my brain feels empty of all thought, and creativity is well out of reach, but writers are supposed to write. So here I sit, unsure of what will come out next.

When I think about my blog and the reason I started writing it, I find myself both proud of what I have created and at a loss that there is anything left to say. This makes me both pleased and a little sad. I love my blog and I love to write. I have found it profoundly helpful to write about my thoughts and experiences living with this disease, but at some point, it all just gets a little repetitive.

Yet writers are supposed to write, so even though I don’t really think of myself as a write…I write. I write in hopes that new ideas will present themselves. I write in hopes that new thoughts will fill my head. I write because I’ve come to rely on writing as a form of medicine. It feeds my soul to write. It empties my already all too often empty head. I write because it makes my fears melt away and my sorrows shrink.

I write even when the only thing I have to write about is how I have nothing to write about. I write because writing has become like breathing for me. I need it, like I need air because the thing about my blog, is that it connects me to others who are like me and to those who want to know me better. It connects me to a part of myself that would otherwise remain hidden away. It puts me out there and makes me vulnerable because it forces me to be real. Even when it’s repetitive and even when it’s boring, I write. I will continue to write because that is what writers do.

Guest Blogger: My Husband

(Preface: My husband was an English major in college so when I said I was going to start a blog, I was a little intimidated by his knowledge. I didn’t want to make a fool out of myself in his eyes. Since starting my blog, he as been encouraging though and for that I am grateful. This blog has been a life saver for me. It’s a place I come to sort out my feelings but it has also brought me a community of readers who encourage and support me, many who can relate to my journey in one way or another. I asked my husband if he wanted to be a guest blogger recently, because I knew his insight would be interesting and well written. I also thought it might help someone who reads it better understand what its like to live with a chronically ill person. Here are his thoughts.)

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When my wife asked me to guest blog, several thoughts and questions ran through my mind. Firstly, why would she ask me? I mean, isn’t this her thing, something personal, something that she finds fulfilling? I came to accept that this is something she wanted to share with me and you. Secondly, I wondered how a blog from me would be received: Lisa’s blog clearly has meaning to her and to those who read it. I decided to follow Lisa’s example and simply express myself and leave the results to others. So with these misgivings laid bare, here it goes.

I came to understand Lisa better as a result of her disease and her blog. What I learned is that you can see what a person is made of when illness or disaster strike that person. Platitudes that a person might sincerely offer turn out to be a thin mist when what is needed is the rushing water from a fire hydrant. I’m thinking of the wry expression, “Take my advice; I’m not using it.” Lisa has shown me a courage I didn’t know was possible. Yet behind that is a vulnerable person hoping the inspiring things she says are true. I think Lisa has observed that the fight against a disease like this is a marathon, not a sprint. But it is exactly this observation that provides an unexpected gift: illness and uncertainty put little things in perspective. Not knowing when or if a chronic disease will spiral out of control makes the everyday challenges look small. Work stresses like new, annoying tasks or a less than ideal boss seem hardly worth worrying about. Doing something that used to be difficult, such as giving a presentation, learning something new, or teaching a class, becomes easy when compared to the struggle to be healthy when your body seems dedicated to destroying itself. I’ve learned from living with and loving Lisa that equal doses of fierce determination and faith are required to keep balance and hope alive. I’d like to thank everyone who appreciates and thanks Lisa for her blog because her blog and your encouragement also fuel Lisa’s determination.