Living with a chronic disease has given me the opportunity to fully embrace and embody the art of Mindfulness. Mindfulness has become a trendy word/concept inordinately overused and “under”-understood by professionals and lay people alike- be mindful of this, be mindful of that, be mindful of other people, be mindful of what you eat, and the list goes on. . . It has become cliché to be mindful.
But what does Mindfulness even mean, and how often are these words put into true practice? How often are we truly mindful versus merely mimicking the fad ridden language of Mindfulness?
Mindfulness is being in the present moment, without judgment; and with full attention to and acceptance of what is.
When one is fully aware of moment to moment experiences and sensations, the cultivation of a here and now presence unfolds and softens the illusion of “me,” and strengthens the reality of “we.” With Mindfulness, fears of future foibles are demystified, and ruminations about past mishaps are quashed.
There is only NOW.
And in every given moment, there are opportunities for learning, growth, understanding, new perspectives, insight, etc…
These opportunities are available to the present minded observers, those who exemplify an attitude of a beginner’s mind, and an openness to the vastness and spontaneity of life.
Thoracic Endometriosis has been a gift in disguise for me. It has forced me to be present! I am living mindfully because that is how I can live at all! I teach mindfulness, I understand mindfulness, but as a result of this illness, I have finally and truly integrated it into my whole being.
This disease acts like cancer; thankfully it is not malignant. There are many things one can do to manage the disease: anti-inflammatory diet, regular relaxation, estrogen blockers, hormones, and surgery; believe me, I do them all. But ultimately, there is no cure. In Thoracic Endometriosis, estrogen, cytokines and prostaglandins (related to the inflammation process), congenital birth defects, and gene mutations all play a role in its development. Endometrial implants (benign tumors) grow in the chest cavity, pleural space, and/or lungs. When they burst, they bleed into the lung cavity and collapse the lung. These implants produce their own estrogen via the Aromatase enzyme. This underscores the fact that hysterectomies do not cure this disease. Also, once the implants reach the lung, they sometimes mutate, hence creating a unique chemical make-up that does not resemble that which is found in the pelvic endometriosis. In the lung, these implants have no exit path. Surgery and hormonal treatments can reduce them, but they often, like cancer, come back.
With Mindfulness, like an attuned mother knowing what every cry and non-verbal gesture of her baby is communicating, I can translate what every stab, burn, ache, or pull in my chest cavity is trying to tell me, and I listen. I can understand the language of my lung!
I must be present in each moment to listen to my lung, to listen to my body. This hypervigilance to my chest, so to speak, has transformed me into a person who is gradually learning how to detach from the useless chatter of my mind, and has equipped me with the incentive to check in with the sensations of my body. When my thoughts try to convince me that I am a victim, or that I am alone in all of this, I, not without extreme struggle, focus on my bodily sensations and I factually describe what I feel. I do this without judgment- that is, I don’t attribute the pain or sensation to anything, I simply notice it and describe it as if I was were a sportscaster doing a play by play on an athletic game. And by doing so, my pain lessens, and the power of unhelpful thinking and worries diminishes.
Stop for 30 to 60 seconds and pay full attention to your breathing. Just notice your inhalations and exhalations without any judgment or pressure. If your mind wanders off, gently say to yourself, “oops, come on back to the breathing.” Notice as you inhale oxygen with each breath and how it feels moving from your mouth or nose, down your throat to trachea, and into your lungs. Notice as your lungs absorbs the oxygen and naturally disseminates the oxygen to all organs. As you exhale, notice the grey carbon dioxide exiting your body from your lungs to your trachea, throat, and out your nose or mouth. Do this for each breath. At the end of this exercise, thank your lungs.
Breathing is automatic, rarely paid the attention and gratitude it deserves. Without breathing, there is no doing, there is no talking, walking, cooking, playing etc.… Our lungs support our ability to live- they are magnificent.
I have grown to appreciate breathing and the life breathing affords me. I am not entitled to my breath. My breath is a gift, and every day I thank my lungs for allowing me to breath- to live!
In fact, I thank my entire body for its wonderous abilities and I accept my body’s limitations.
I thank my legs for allowing me to walk and move about, and I compassionately accept that I can no longer run or play tennis.
I thank my fingers for allowing me to play the piano and scratch my nose.
I thank my eyes for allowing me to see beautiful things and to watch my son grow up.
I thank my ears for allowing me to hear musical art and kind words.
I thank my mind for allowing me to soak up knowledge, and practice discernment and loving kindness to others as well as myself.
I thank my taste buds for allowing me to savor delicious foods and spices, and I accept that gluten and dairy are no longer options.
I thank my skin for allowing me to feel the warmth of the sun and the touch of a loved one, and I accept that sometimes my skin burns and aches from nerve damage.
I thank my vocal cords for giving me a voice to guide my son, and express myself and share my journey with others.
I am not disabled by this disease that will visit me for life. This disease has enabled my chronic giftedness– I am present and alive, not taking anyone or anything for granted.
I have learned the true meaning of radical acceptance and am freed by its deliverance.
I have learned that there is no shame in being ill and asking for emotional support in a world that says, “reach out and lean on others,” and at the very same time resents you or blames you for your illness.
I have learned by my experience, that sometimes an illness is just an illness—there is nothing and no one to blame.
Maybe I am sick because that is the only way God could get through to my stubborn soul. God may have tried to get my attention in less drastic ways. I hear God, “Julie, attention, here and now…”
This chronic illness has bestowed upon me a chronic giftedness to just be “me,” to help you, just be “you,” and to help us recognize as a people that there really is no “you,” or “me,” but rather a “We.”
There is only ONE whole for which we are all a part. I affect you, you affect me, and WE affect every living thing on this earth.
My illness is yours too.
Julie Ayn Discenza M Ed., M.S., LMFT
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