consuming

People survive in different ways. ~Nikita Gill (via meanwhilepoetry)

I keep saying (out loud, and in my head), “This [transplant] has been such an interesting experience to observe…” and when I wonder the extent to which I tempted fate, or altered my destiny, question whether I made the right decision to (rely on others to help) spend so much money on the gamble, I remind myself that I can only do the best I know in this moment.

Many times throughout each day, I spend time observing.
Reflecting on where I am in the present moment.
Physically, mentally, spiritually, metaphysically.

How far I’ve come, how far from the ‘old’ self I feel, how to navigate the new, how far I hope to go.
Wondering, who [how] am I, now?
I remain in total awe
of this transplant, all that my body has gone through, all that my mind is processing (with so much greater clarity post-transplant!), and how much [we] have yet to experience.

It is interesting to experience the compassion of strangers, who notice my (very short, finally growing in very random directions) hair and immediately connect me with someone who has battled chemotherapy. I am grateful for their caring, and although I may seem “fine” to passersby (as so many of us living with autoimmune/invisible dis-ease know all-too-well), there are SO many layers that create the outward expression to cultivate the perception of “fine.”
If words are offered in curiosity, I smile. Engage their eyes. Pause to acknowledge their effort to connect, despite whatever experience they may have had with chemo. And then I am sure to clarify, “oh, I had a stem cell transplant…”


People aren’t sure what to say.
Not that one is any tougher or scarier or worse than another… yet in order to raise awareness of possibilities for anyone suffering from the 23 autoimmune diseases that HSCT can halt, I will always offer what I can, and promote HSCT.

It is interesting to observe the level of patience necessary in this recovery. To experience so many hopeful/minute/incremental shifts and cling to optimism.
While at the same time balancing fear of the unknown,
fear that the head cold I’ve been fighting over a month will turn into a serious infection,
fear that stress will flare old symptoms,
fear that the early menopause will lead to complications,
fear that my desire to halt my MS was in vain,
fear that my healing is compromised by my ambitious efforts to get back to work,
fear that my disability will not improve,
fear that my positive mindset will not always be stronger than my anxieties.

So many HSCT veterans acknowledge the mental challenges of recovery.
So many HSCT veterans actualize the trauma of the transplant.
So many [feel the need to try to] hide from societal stigmas of mental health.
and I am beyond grateful that the inquiry and reflection I enjoy comes readily for me, and that when it might seem dark, I can find light.

Grateful, because I know the positive outlook that is so embedded at the core of my being might not be [at all] easily found by people, especially for whom trauma has overwhelmed their core.
and this HSCT recovery rollercoaster [and trauma, and depression, and anxiety, and PTSD, and illness, and suffering, and… the impact on our physical, mental, emotional, and spiritual health and well-being] is real!

So, to any HSCT veteran out there that just wants to be heard, I’m here to listen.
And to any HSCT veteran looking for support in working through recovery, please reach out and let’s chat about how I [we] might be able to support you [each other].
In the coming weeks, my intention is to produce/air a podcast, “HSCT Warriors” in which I hope to interview HSCT veterans. Bring voice to our experiences. Connect us within a community of commonality. Help anyone feeling isolated in their HSCT experience to know they are not alone. Bring mindful awareness to the invisibility of autoimmune diseases. Advocate for an inclusive society. Advocate for HSCT.

(side note: have you heard all that the Imaginary Friend Society is doing for kids braving cancer? What a tremendous resource! Maybe we need an adult version…)

Apparently today is the thirtieth anniversary of celebrating Pi day… the mathematical constant [meaning it isn’t changed by the size of the numbers it’s used to equate] that is irrational [meaning it has an infinite number of digits that never repeat]. I am 4 days shy of my 5 month stem-iversary, and I can honestly say that every moment of this recovery feels irrational, with an infinite number of experiences that never repeat [at least in any semblance of ordinary]. Today I am nearly one month shy of turning 40, and so very hopeful about [and pleased so far with] my recovery. Despite the constants in my life, so much remains unknown. I choose to embrace ambiguity. Get comfortable with not knowing. Because [if we’re lucky] perception seems just about the only thing we we can control.

Sometimes it seems
We’ll touch that dream
But things come slow or not at all
And the ones on top, won’t make it stop
So convinced that they might fall
Let’s love ourselves and we can’t fail
To make a better situation
Tomorrow, our seeds will grow
All we need is dedication
Let me tell ya that

Everything is everything
Everything is everything
After winter, must come spring
Everything is everything
Everything is everything
What is meant to be, will be
After winter, must come spring
Change, it comes eventually

~Lauryn Hill

4 Comments Add yours

  1. MamaWise says:

    Hello, my dear Stem Sister! Your words are so incredibly powerful and ring so true for me. I just celebrated my one year Stem Cell Anniversary on February 23rd, and am still in awe and wonder of the incredibly surreal journey I have jump on for the remainder of my life. Which now looks like it will be a full, long, and healthy one. I have beaten that MonSter. The one that would not allow me out of my eternal struggle to survive. Many blessings to you dear Sister. Look me up for that interview that you will be doing. I would be more than happy to help in any way I can.

    – Anna Wise, HSCT Veteran, Northwestern, Chicago, Feb 23, 2017

    Liked by 1 person

    1. jdskoenig says:

      Thank you for sharing your story and videos…your insights and reflections have certainly been an inspiration. Looking forward to interviewing you on the podcast!

      Liked by 1 person

  2. Shannon O'Neal says:

    Always love your posts, as always: thank you! (And the crocus!)

    Liked by 1 person

    1. jdskoenig says:

      Thank you for reading!

      Like

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