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Coming out…

February 16, 2014

Disease is the great equalizer. I say this because at 37 yo I never thought I’d be divorced twice (due to doormat tendencies rather than bitchiness), have 2 college degrees I will likely not directly use, be living with 2 painful diseases, living with my parents, and wondering about my future with a beautiful 6yo son to care for…so this is my vulnerability of humanity coming out party. Somehow the truth will set me free if only from my own self imposed humiliation.

In 2009 I was diagnosed with acute onset RA, and just last year with CMT (Charcot Marie Tooth Disease aka, Hereditary Peripheral Neuropathy). Because there are no cures for these diseases and no absolutes for their treatment, progression or remission, Tim McGraw’s song, Live Like You Were Dying is a bittersweet reminder of how I live now, while Shakespeare, Whitman, Thoreau, and Emerson, Rumi, Gibran, Jesus, Buddha and Gandhi never made more sense. I do not know what, how or if pain will manifest from day to day. Planning anything beyond a few days in advance is often an exercise in futility or an adventure depending on how I choose to view. I’ve relinquished friends, and jobs due to the effects of these invisible diseases. But read here carefully lest you mistake my recognition of these conditions as complacency or self pity.


These diseases are active learning experience from which I cannot disengage. Pain demands attention, especially pain which cannot be medicated away. They demand that I feel, to give of myself and that I be able to receive, both medicines equally important. Compassion inward and outward are the only havens. These diseases have developed empathy I would never have known and perspective taking which would have been otherwise impossible without standing here. Dare I be called a hypocrite or an idiot, I’ll venture to say I better understand despair, junkies, addicts of all variety, pessimists, the abandoned, the deserter, victims, abusers, emotionally unavailable, neurotics, manipulators, quitters, spiritualists, religionists, atheists, especially agnostics, and even zombies.

These diseases are values clarification exercises on anabolic steroids.
These diseases make me a better, more compassionate and introspective nurse. They also prevent me from bedside care due to the intensity of 12 floor shifts and the physical demands of safe patient care.

These diseases are teachers. All bodies will eventually succumb to decay. These diseases give me clarity in what is important, what is lasting, where I shall weigh to invest my life energy, where I will leave my legacy on the experience of human kind after my physical form, words, smile, embrace, kiss and smell have faded from this plane and the memory of those who knew me. Because even though I will be forgotten, as I should be, how I live and impact people will be carried on through the actions of passive yet oh so active learning of subconscious immolation. Those familiar with mirror neurons know exactly that to which I refer. We may not have been prepared for the roads we walk, but we do have the ability to leave the road behind us better laid, and to teach better ways of building as we go toward our horizons.

So…what are the great lessons I’m being taught. They sound trite, and cliché because they are simple. We make them hard. They are unexplainable because they can only be experienced: Love is all we need. Tomorrow is an illusion, but live today with relish and gratitude for now and in the hope of tomorrow’s birth. Give as you desire to receive. And know you were born of great love, meant to love and be loved in return.

  1. You and I do share more than I knew. Your strength and perseverance is beautiful. Me as you know YOPD at 41 and I too get to live with peripheral neuropathy. How you can work with acute RA is bloody amazing. Pd sidelined me in a year of DX. I look forward to reading your words.

    • It’s so good to meet you. I’ve said that already, I think. Forgive me if so. But, your kindness helps me so. I am also sidelined from work currently. I’m looking for other ways to work as an RN, as income is still necessary. Bedside nursing, though I love it, is not viable now. Thank you for your kind words, again.

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