Lupus is a creation of mine, its own story really, not one of which I am proud, as its writer, but I have been its source of life for the last 35 to 40 years, maybe even longer.
It is not possible to note the day my lupus gene switched to on nor is it possible to know why I have the gene or what activated it, if anything. It simply is. That part of the story has never mattered to me, even before I knew about the Tao or Zen.
It took me most of my life to understand I am not my lupus and that autoimmune disease is its own story, one steeped in imitation and deceit, usually disguised as flexibility and malleability. Separating what is the lupus story from all I am has been delicate and sometimes, seemingly impossible.
Through the Tao and Zen, I have come to believe my body is my soul having a physical experience, which gives me, a writer, the luxury of viewing lupus as story, a structure I do understand. In all the ways I have viewed lupus, it never occurred to me to view it as a story until very recently.
Lupus really does have plot points, conflict, a protagonist and an antagonist, all tools of my trade on my turf. I just may have the advantage here for the very first time.
In some ways, I have had a long life with lupus, if knowing lupus by other names counts. Lupus’ ability to mimic so many other illnesses along with my gullibility in believing one misdiagnosis after another are extraneous chapters but there is this: my heart never believed any of those labels.
In the lupus story, my heart is the protagonist and my brain or ego is the antagonist, the one that drives the conflict in every story, and all stories have an antagonist and a protagonist locked in a conflict box.
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As the lupus story opens, my immune system produces antinuclear antibodies to fight infection and viruses, just as it should, until we reach the first plot point: a normal immune system turns on itself and begins to attack the very body it defended for years, for no apparent reason.
This relentless war for the body continues for years under various guises–multiple sclerosis, migraines, mixed connective tissue disorder–until Sjogren’s wipes out the salivary glands to pave the way for lupus.
As we reach the midpoint of the lupus story, the brain discovers that it, too, is under attack and turns to the last bastion of hope, the open heart, the remaining connection to the spirit that animates the soul’s body.
I do know that in any story there is one more major plot point before the conclusion, and the lupus story is no different. I don’t know the last plot point nor do I know the conclusion but I have this: the structure of story has given me some of my first moments truly away from the physical battle, and I know I am so much more than the lupus story.
ROW80 Sunday Scheduling
I finished reading The Night Circus by Erin Morgenstern and may write a review for an upcoming blog post; however a very fine writer, Stephanie Carmichael, wrote an excellent review that you may read here. I cannot imagine what I could add to this review. The Night Circus is one of the best novels I have ever read and am considering purchasing it (I borrowed it from the library) as it is a book to read and re-read.
I continue to write at least 500 words a day, mostly nonfiction, and I reached my goal of scheduling blog posts so I am not writing to deadline on Sundays and Wednesdays. This next week will be the dismantling of my novel’s first draft, which I plan to have finished by April 22, 2012 as well as a rough outline of its scenes so I may begin “plotting” the novel’s major points. Unlike the lupus story, I actually do know how this story ends.
For the rest of this round, my goal is a weekly total of 2500 words, as I do not know how long it will take to plot the novel so I do not know when I will start the actual writing of the second draft. You may read more about my second Round of Words in 80 Days here.
KM Huber's Blog 
There is something about illness which serves a purpose in clarifying what is important in life. You do seem to have found a way to ‘treat’ the lupus which I am sure will work for you as story is so much a part of you as well. It is also wonderful to have your blog to be able to share with others and bring the outside world in even when you are physically confined.
I think The Night Circus is such a life affirming book too and has certainly been another way of looking outwards. It is an escape into another world but has a lot to offer in this one too! I never imagined it was the sort of book I would get so much from which has stayed with me – I would love to see a review from you!
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The Night Circus has never left me, either; time and again, my dreams wander there. As for the lupus story, it has had a scene or two of late but we are still far from that third plot point. I so appreciate you reading my blog.
Karen
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Having known people suffering with breast cancer and strokes…and lupus, yes…. One thing I’ve always noted was their power and zest for life in the face of the illness. As one friend who was suffering from Lou Gehrig’s told me “Yes, the pain is horrible, but I’m not going to suffer for it.” She died a few months later, but she lived the way she wanted right up to the end. While I do miss her, our visits were intense and powerful enough, I can remeber the shrimp scampi pizza we would order while we discussed the various character similarities between our protagonists.
Stories… They are everwhere.
Thank you, Karen, for stirring the pot of memories.
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Yes, Eden, stories are our magic, which outlasts us. Glad to be able to stir the pot for you.
Karen
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Karen,
Good for you! You gave the Lupus a name, and made it a story of it’s own. Therefore, although you live with it daily, it is Not YOU and You are not it! You have it, but keeping it away from your soul you teach us all how to live with what life has given us. Thanks again for your wisdom!
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As a story, lupus does have its own tale, which means possibilities for both of us. Thanks, Dona.
Karen
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I love the analogy, too. I think back to my early days studying literature when we were instructed in various plots: man vs. man, man vs. society, man vs. god(s)….etc. And your story becomes, with this twist, NOT a (wo)man vs. illness plot but something much more fresh and interesting.
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I, too, remember those days, Ann, paper after paper. So far, there is energy in the analogy, and I’ll take it. Thanks!
Karen
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Poetic discourse on the life lived with lupus. There is one hidden beauty, if one dares to live in inexplicible happiness, refuses to succumb to anything less. You have been ‘assigned’ to display dignity and grace even in circumstance that would cause others to fall. You are a beacon to someone who will receive a diagnosis – an example. Make it what you will. :}
Have a great week.
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Most kind, Nadja, and much to consider especially as an assignment. Ah, yet another way to consider. I thank you.
Karen
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Karen, what a wonderful analogy, equating a health challenge with a story, separate from your soul. A creative tool, but separate.
My story is an inner journey always reaching toward positive emotions such as conentment, peace, love, joy, compassion, wisdom, understanding, all of which is wrapped up in enlightenment which takes many years … and endeavoring to reach the place where no matter what, those positive attributes hold and rise above the suffering in life. During my search, I caused my loved ones to suffer while they fussed about me, but that also completed a perfect circle of life.
I like the phrase “All suffering comes from the inability to accept that which is” — which is not to say that we will not suffer, but that we reach to accept occurrences and not fuss or worry about them, creating mountains of negativity. And I take from that, to endeavor to live in the present moment. For to leap ahead is to cross bridges that you may never be required to cross, and to live in the past is to dig up food long since consumed, only meant for the creative process of our souls, necessary to take us where we are today. Which brings me to the final ultimate tool of the creative force, to trust that the process is perfect in every life.
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Beautifully written, Marion, really. To understand the growth in challenge is huge but as you say, part of the perfection.
Karen
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It’s interesting equating your struggle with Lupus to a story. I think this is the true about all illnesses: they form the content of a story. This is certainly a new (and possibly helpful) way to think about serious health conditions. Thanks for this post.
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It does seem a way to truly explore health issues, perhaps even wholeness. Glad you enjoyed the post.
Karen
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Finding perspective is the first key to freedom from the things that effect us but that we cannot effect in return. Excellent attitude, Karen and I hope that the new peace will free you for better things on the road ahead.
Lovely job on the writing front – keep pressing for the things that matter and have a fantastic week 🙂
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As always, Gene, you provide wonderful words of encouragement that are much appreciated. As you say, the key is in “pressing for the things that matter.” Have a great week and always enjoy it when you stop by.
Karen
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Thank you for the kind words, Karen! I greatly appreciate them and how wonderful of a visitor you’ve been to my blog. Thank you, as well, for sharing your story. Stay strong. I wish you all the best.
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Oh, Stephanie, my pleasure at referencing your blog, http://misprintedpages.wordpress.com, as I so enjoy it. I’ll warn you that I am planning a short review of The Night Circus for an upcoming post and another reference to your fine review. Both your blog and the book are more than worth reading.
Karen
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Thank you very much! And I’ll keep an eye out for that one! Don’t let me forget—drop a link to your review on my blog if you have to! 🙂
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I’ll put the link in your review’s comments and thanks, Stephanie!
Karen
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Karen, you are amazing! What an inspiring way to defeat the negativity of Lupus!
I too suffer from illness. I’ve been off the grid now for over a week. So I understand and respect your attitude. Have a great week! 🙂
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Oh, Karen, am glad to hear from you as I have been wondering about you; somehow, I think I knew about your illness, which does seem to manufacture negativity all on its own. I’m am thinking of you and have a great week.
Karen
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What an incredible, enlightening perspective you put on Lupus, Karen! I had never considered an illness to be a Story into and unto itself … this is giving me much food for thought, friend, thank you!!
Excellent post, as always.
XXXOOX
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Oh, Lura, so glad to see you here; you always bring so much light. It just seems that putting something so pervasive into a structure I know provides a comfort and implies an understanding.
Much love always,
Karen
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You and I must be on the same page. I wrote yesterday about my asthma, and I think that I will take the lead from you and write next about some of the teaching I have gotten from living with a chronic illness. I know that lupus and asthma aren’t the same, as I have rarely missed work and asthma doesn’t progress if it’s treated, but there are life lessons that I probably wouldn’t have learned without something pushing me to pay attention. I am glad to see that you have found some grace in what must be a very trying condition.
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That’s right, Ann, you did! What great company I keep. I do believe sometimes we need a nudge to pay attention, whether it is lupus or asthma, and I look forward to your future posts.
Karen
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What an inspiration you are, Karen, for all of us with or without serious disease. For some, even negativity is a disease and they don’t live it with as well as you live with Lupus. I wish you an easy time on your 2nd draft and then on the road to publication for both fiction and non-fiction. Hope your week is sunny!
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Thank you, Marcia, for such kind and encouraging words, which I take to heart, as they seem best to hold negativity at bay. Hope you, too, have a great week.
Karen
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I am glad you have found a new way to look at Lupus, and having it laid out that way, the concept of it as a story is clear. I’ve had friends and family struggle with misdiagnosis, chronic diagnosis, Lupus counted among them. And the one thing that never fails to have an impact on the people involved is the attitude they keep. That you can look at it outside of your self is commendable and points to you being able to live with it as apposed to dying from it – that distinction matters most on the final day, whether that day is today or twenty years from now.
Be well!
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It is as you say, to live truly and know that in the final moment. Thank you, Lynnette.
Karen
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Given a choice life would be easy, one good thing after another, but it isn’t and the growth affliction forces us to make is the story. Our triumph is to be more, or other than, the diagnosis, to build on the unchangeable structure of disease or damage and put what cannot be changed to use.
You do that with such grace. Another beautiful post Karen.
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Thank you, Adrian, your words humble me. I will keep them close.
Karen
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