November 2013
The Works of Donna Falcone
Donna Falcone...Lyme as a Footnote
I’d like to share a Rumi quote with you. It fits perfectly with my feelings about this Lyme Road I am on. Hundreds of years later Rumi comes through!
"Out beyond ideas of wrongdoing and rightdoing, there is a field. I will meet you there.” -Rumi
What a spectacular yet simple invitation to let go of the strain of battle and find healing. Lyme, and what is known as the Lyme Wars, has consumed too much of my recent history. You might say I’m battle weary and need to feel who I am again, the me who is consumed by living, not consumed by Lyme Disease. This is where I want to be now - out in Rumi’s field.
I was diagnosed with Lyme and several other TBDs in 2008, at least 10 years misdiagnosed (but likely 30). Like a child playing dress up I have tried every costume that goes with the diagnosis Chronic Lyme Disease. I have comfied up and cozied down in the trappings of the Wounded, the Warrior, the Disabled, the Advocate, the Flag-Waver, the Denier, the Survivor, and the Devastated. What I have learned is this: as the body goes, so goes the mind and spirit. However, these three are inextricably linked and the converse is true as well. As my body goes through the many changes and upheavals of treatment and recovery my mind and spirit are challenged to accommodate the physical consequences. Much to my surprise, it became clear to me over time that when I am able to stay mindful and present I am also able to attain a higher level of physical wellbeing.
About a year and a half ago I set an intention for myself: to let go of that which kept me in a constant “state of Lyme”. It was painfully obvious that activities I was spending time and limited energy on were keeping me sick by placing undue and heavy burdens on my mind and spirit. This in turn depleted my body of strength, energy, and drive. I asked myself “if thoughts really DO become things and if happiness and health really are a state of mind, and I have made a home for myself in a Lyme Painted House, how on earth could I expect anything different?” Changes had to be made.
"Out beyond ideas of wrongdoing and rightdoing, there is a field. I will meet you there.” -Rumi
What a spectacular yet simple invitation to let go of the strain of battle and find healing. Lyme, and what is known as the Lyme Wars, has consumed too much of my recent history. You might say I’m battle weary and need to feel who I am again, the me who is consumed by living, not consumed by Lyme Disease. This is where I want to be now - out in Rumi’s field.
I was diagnosed with Lyme and several other TBDs in 2008, at least 10 years misdiagnosed (but likely 30). Like a child playing dress up I have tried every costume that goes with the diagnosis Chronic Lyme Disease. I have comfied up and cozied down in the trappings of the Wounded, the Warrior, the Disabled, the Advocate, the Flag-Waver, the Denier, the Survivor, and the Devastated. What I have learned is this: as the body goes, so goes the mind and spirit. However, these three are inextricably linked and the converse is true as well. As my body goes through the many changes and upheavals of treatment and recovery my mind and spirit are challenged to accommodate the physical consequences. Much to my surprise, it became clear to me over time that when I am able to stay mindful and present I am also able to attain a higher level of physical wellbeing.
About a year and a half ago I set an intention for myself: to let go of that which kept me in a constant “state of Lyme”. It was painfully obvious that activities I was spending time and limited energy on were keeping me sick by placing undue and heavy burdens on my mind and spirit. This in turn depleted my body of strength, energy, and drive. I asked myself “if thoughts really DO become things and if happiness and health really are a state of mind, and I have made a home for myself in a Lyme Painted House, how on earth could I expect anything different?” Changes had to be made.
I wasn’t sure how to do this, but I knew it was going to take a lot of letting go. I was asking myself to stand at the mirror and take off the well-fitting costumes that did not serve me any longer. Off came the Warrior’s cloak, folded neatly, and packed away. Alongside that I placed the dress of the Flag Waver and the Advocate, neatly pressed and ready for duty. I still need these now and then but I don’t try to wear them every day and I DEFINITELY won’t wear them all at the same time anymore. Onto the fire I threw the trappings of the Victim, the Denier, the Doubter, and the Devastated, letting them smolder until nothing but powdery ash remained and the wind carried them away. Some days I wake up after a fitful night of sleep and discover I am all dressed in the wrong clothes again, but I notice more quickly now and I act in my own best interests. My goal is to stand before the mirror wearing nothing but this moment, ever changing, impermanent by law; Holding the Presence like a cape around my shoulders. It’s a much lighter garment than the Warrior’s mail. I avoid extremism in all forms. Extremism is not good for me. The anger of the Lyme Wars and the injustices mounting are painful and draining. I acknowledge them and help when I can, but don’t dwell on them.
Photography has become very important and helps me see the world in a whole new way. Writing has become my passion again, reminding me that as a young adult I dreamed of being a writer. I began reaching out to others who were busy with these things that interested me and found a world brimming with learning, humor, fun, beauty, and people from all walks of life willing to help me along the way. Gradually I spent more and more time on these activities and my illness was left to run in the background. Even when I don’t feel well enough to write I can read. When I don’t feel well enough to read I can listen. When I can’t get out with my camera I can edit and compile my images. Even when I feel too under the weather to participate in online communities or local happenings I can still observe, learn, and enjoy what others do.
Photography has become very important and helps me see the world in a whole new way. Writing has become my passion again, reminding me that as a young adult I dreamed of being a writer. I began reaching out to others who were busy with these things that interested me and found a world brimming with learning, humor, fun, beauty, and people from all walks of life willing to help me along the way. Gradually I spent more and more time on these activities and my illness was left to run in the background. Even when I don’t feel well enough to write I can read. When I don’t feel well enough to read I can listen. When I can’t get out with my camera I can edit and compile my images. Even when I feel too under the weather to participate in online communities or local happenings I can still observe, learn, and enjoy what others do.
Some days I still feel torn between the freedom of my dreams and the grieving of what once was. When I read about others busy in their careers, it hurts. When I see my old friends talking about the work I once loved, it hurts. When I start pouring over the want ads on a good day filled with feelings of “maybe this is it… maybe Lyme is done with me” only to throw out all my leads as I lay in bed the next, it hurts. The difference is I don’t linger in the hurt. I let it wash over me and resist the urge to wrap my story telling arms around it! The feeling is enough for me. The story or drama I could create for myself around it is like paying extra tax and who needs extra tax!? Lyme is taxing enough! Instead, I ask myself what I need or want to do that might lift me up. Then I do it. It might be as simple as putting on a favorite piece of music because I realize I have been sitting in the deafening silence all day long. It might be as uncomplicated as going outside to sit in the sunshine, or calling a friend, or visiting a favorite place. Sometimes what I really need is a nap so I take one. I try to listen to my body and give back to it. It has done so much for me.
In learning to let go of resistance to what I cannot change one of the hardest losses to accept has been my memories. As a result of infections crossing into my brain I have been cut off from the lion’s share of them. Letting go means, for me, releasing the anger I felt towards the loss. I wanted my memories back and thought if I just turned down the right path or peered into the right dark corner I would find the hidden key causing them all to come rushing back. This loss consumed me and resulted in exhausting, fruitless quests. But I can no more control my memories than I can stop the rain from falling or the waves from rolling onto the shore. It’s out of my hands, and that’s okay. The simple truth, which cannot be controlled, is that the future is not mine to know and my warehouse of the past is beyond my grasp. Now I look for the blessing – the purpose that leaves me standing strong. Here I am, now, holding the presence. Certainly this is not what I expected in my life, but it’s not such a bad purpose, is it? More and more it even makes me smile and fills me with gratitude for the freedom it provides.
I feel like now, after more than 5 years, Lyme has become something I carry around with me...kind of like an old cranky stray that needs attention and some special care. I feed it. I care for it. But I try not to obsess over its every need anymore. Lyme is no longer the biggest thing in my life. Living is. Lyme is merely a footnote. Today.
In learning to let go of resistance to what I cannot change one of the hardest losses to accept has been my memories. As a result of infections crossing into my brain I have been cut off from the lion’s share of them. Letting go means, for me, releasing the anger I felt towards the loss. I wanted my memories back and thought if I just turned down the right path or peered into the right dark corner I would find the hidden key causing them all to come rushing back. This loss consumed me and resulted in exhausting, fruitless quests. But I can no more control my memories than I can stop the rain from falling or the waves from rolling onto the shore. It’s out of my hands, and that’s okay. The simple truth, which cannot be controlled, is that the future is not mine to know and my warehouse of the past is beyond my grasp. Now I look for the blessing – the purpose that leaves me standing strong. Here I am, now, holding the presence. Certainly this is not what I expected in my life, but it’s not such a bad purpose, is it? More and more it even makes me smile and fills me with gratitude for the freedom it provides.
I feel like now, after more than 5 years, Lyme has become something I carry around with me...kind of like an old cranky stray that needs attention and some special care. I feed it. I care for it. But I try not to obsess over its every need anymore. Lyme is no longer the biggest thing in my life. Living is. Lyme is merely a footnote. Today.
Poetry and Images
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Poetry
Kaleidoscope
The Kaleidoscope images were created from the images that accompany them of the same name. They illustrate the truth that things aren't always as they seem, all of the original images are quite different from their Kaleidoscope counterparts. It is the same with Lyme. People can't usually tell how sick we are by how we look. They also illustrate what could have been a devastating illness has actually opened many pathways to growth and creativity.
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Support and Contact Donna
Support DonnaDonna's book of poetry, Sweet Butterfly Kisses, is available for purchase on Lulu.com. Find more of Donna’s poetry, images, and writing on The Brighter Side Blog, partner page to The Brighter Side, Living With Lyme (a resource site for inspiration, ideas, and strategies for living well with the challenges of TBDs). Make sure to share your own writing and inspirations about your Lyme journey! Join in on @poetryoflyme on Twitter and Poetry of Lyme on Facebook. There is also much more to be seen on Donna's Flickr page. View the Credits and Attribution notice for the works contained on this page HERE. |
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