In this podcast entry, I share with you a deeply personal excerpt from my journal (see below). Thanksgiving week is upon us and I have so very much for which to be grateful. I am a very lucky lucky girl! Thank you immensely for visiting and sending your good thoughts.
May health and happiness be yours!
“Hope’s Chuckle” (excerpt from my journal) ©Christina Danyluk
I breathe in the still tepid air, but this once simple action is now quite labored. My body is in pain so immense, I almost cannot fathom its burning depths. And yet in these circumstances why am I chuckling? I shudder and wonder if this is the moment in which I have fallen off the deep end and crossed into lunacy. Or is the divide between sanity and madness quite nebulous? Perhaps the two extremes are not separated by a solid firm line at all, but more by an ethereal cloud-shape, which is never quite in the same place moment-to-moment.
What has become normal now for me, many may consider crazy, absurd, or ludicrous. To what ends am I willing to go to save the shreds of life inside me? That is a vital question I have pondered not once during the past several years. The reason I chuckled during today’s typical challenges is that I have indeed come a long way, from a year ago, when swallowing, eating, and breathing seemed not mine to possess for much longer. I think of the sad conversation we had at home not so long ago: where might we place the hospital bed and ventilator. I pause and reflect. Yes, I have indeed come a long way and I am immensely grateful. I truly believe my experiences have prepared me to look reality squarely in the face and accept life’s course. What I learned, though, is no matter how much I practice accepting today’s reality, there is an ember inside me yearning to live a normal life. It is like homing beacon keeping me going, helping me fight through the intense treatments striving to get better, directing my course and focusing me on the end goal.
What is normal in my house now, you may wonder? Vomiting in cycles, 12 hours on and 12 hours off, for weeks at a time. As I lie on the bathroom floor almost too weak to move, I keep a phone nearby, lest my family not be able to reach me and worry. My bones burn in pain so intense I yearn for a huge fire extinguisher, for surely there is a five-alarmer in our midst. And then come the waves of confusion. When I get overly busy and need to juggle a few things in my head, my brain decides to take a hiatus and conducts a system-wide shut-down. All I can do is sit and wait for the eerie void to pass. I wrap my chilly body in a thick blanket and perhaps in an hour I will remember where I keep my clothes. Joint pain, like thick hot molasses, slows my movements. My head feels as if it will explode, like a 4th of July fireworks display, catapulting my insides into the world. Fevers come and go, I am hot and cold, and the household thermostat is being exercised profusely. I can often describe an item in great detail, but not remember its name, such as “the thing you use to pick up soup from a bowl” but the word “spoon” escapes me. The tingling, numbness, and shaking in my extremities means I often make a mess in the kitchen preparing the most simple meals. I buy dishes and glasses quite regularly, to replace the ones that broke as they slipped thru my weak grip and numb fingers. Some of the typical household items in our cupboards have now been replaced with intravenous supplies and other medical paraphernalia, all hidden from the world’s view by a thick opaque cabinet door. The occasional urinary incontinence unfortunately still comes unannounced. Gastrointestinal distress and constipation are severe so that morsels of food are carefully considered before being ingested. Yes, these are all normal aspects of my life. Of course, this litany of symptoms waxes and wanes, each with its own rhythm, akin to a symphonic production, in which each movement proceeds at its own cadence...fortissimo (very strong), pianissimo (very soft), or sforzando (with forceful sudden accent).
And the treatments…there are the moments I wonder when they will end or even if they will work, but that thought is almost too frightening to ponder. Is it normal to have a hose sticking out of your heart thru the chest wall to accept daily poisonous quantities of pharmaceuticals? The opening has to be kept sterile, clean, and completely dry, lest bacteria enter and a deadly infection ensues. This is not melodrama, this is reality. When I put in all on a scale, though, I decide that in order to have a future at all, in the near-term, these treatments are what I truly need. The fierce regimens do not assure me of a future, but they do buy me the possibility of one. And so with enormous hope, I accept them along with their consequences and side-effects. In a few years time, as knowledge progresses, these protocols may seem barbaric, but for now this how “state of the art” looks and this is my “normal”.
But what is “normal” anyway? “Normal” might look like some glossy magazine cover, heavily manipulated in post-processing and thus unattainable by us in the real world. “Normal” may be a pretty perfect vision we have in the mind’s eye, which is completely incongruent with current circumstances. Perhaps it is best to drop the concept of “normal”, because after all, how can any of us measure up? Reality is what it is and not what we wish it to be.
So, in order to move forward, I must accept my total self, as I am truly and authentically today - accept my body, which is doing its best under the most trying of circumstances; accept my mind even in those moments when it all seems too hard; and accept the immense daily challenge of demonstrating to those enterprising adaptable microbes that I shall indeed prevail. No, this is not madness or insanity. This is balancing the acceptance of my current circumstance with the indelible vision that it will soon change, and the enduring faith that I have the daily strength to make it happen. I continue to focus on the things I can do now and relish in the joyous moments that abound, but I also clearly envision the plethora of things I will do and experience when my situation improves. Life is here every moment of every day, waiting for us to claim it, so let us not postpone truly living. And so, once again, I share a knowing chuckle with my precious friend named Hope.
Like the 133+ million Americans facing medical adversity today, I too, am on a seemingly insurmountable journey. In the midst of overwhelming calamity, what tools can empower us to get on with the business of living and thriving?
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One Step at a Time
Focus on Living
IV Pump Demo
Traveling with IV Supplies
Tackling Lyme with IV
Reducing Hidden Inflammation
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