6/07/2013

"don't move that limbo bar. you'll be a limbo star."--chubby checker


i find myself in an interesting, aggravating, and heart telling place place these days. limbo, if you will. limbo in the sense of being in an intermediate, transitional, or midway state or place, as defined by dictionary.com, or as the oxford dictionary defines, an uncertain period of awaiting a decision or resolution; an intermediate state or condition. 

the space i metamorphically occupy envelops me, framing my every thought and action, and yet i am not defined by the space that i occupy. rather, i choose to be developed by it...not be stringently or radically defined by it. i am a dynamic participant in a state of change. i am in a liminal space, where i am ever in a state of becoming, occupying a position at, or on both sides of, a boundary or threshold...ever on the cusp and in the middle. 

it's the space between.

let me break it down.

today i don't look like i have cancer, but i am sick enough that i need a transplant. i'm not well, but i am not sick. i am a cancer patient who doesn't define herself by just a disease; i am a cancer patient who defines herself as a person who has leukemia, but my being isn't defined by a diagnosis or a treatment protocol because it could change. again. 

but how do i identify? when i walk into the juravinski i don't look like other cancer patients. most days i have to remind myself i have cancer. having cancer has evolved into having a blood cancer, which evolved into needing chemo, which has evolved into needing a transplant, but for the most part i don't fit into any of the molds...i don't look like, i don't feel like, and yet...

i am...

...and i have...

...and i need...

i am not just a cancer patient. i have acute myeloid leukemia. a blood cancer that starts in my marrow and enters my blood stream.

cancer created a common fear and divide between having cancer and not having cancer, but leukemia made me unique and gave me the courage to fight. acute myeloid leukemia suddenly made me unique, setting me apart from a normal, healthy body, putting me in a new category of being. my cells are different than those of a healthy person and because of that i require treatment. my body has taken on a new definition of what it means to be well. what's normal for me has a new definition, and it has changed several times since i was diagnosed with leukemia because normal is relative...normalcy depends on everything else...but my new normal doesn't define me because again, the space is liminal and always changing. normal a little more than a year ago meant shortness of breath, bruising, difficulty doing anything physical, debilitating fatigue. normal after my diagnosis meant blood and platelet transfusions, antibiotics, chemo, hair loss, drug reactions, picc lines and showers with bags on my arm. normal after chemo meant a compromised immune system, fevers, infection, patchy hair growth, bottles of antibacterial wash, masks in public. normal after finding out i need a transplant means a new state of limbo because i am literally in an uncertain period of waiting...

i am...

...and i have...

...and i need...

when i got my diagnosis i accepted it. and yet acceptance--in the sense of understanding "why me?"--still evades me. but i accepted in the sense that i could accept that my body decided to stop cooperating with rules of how the body is supposed to operate...i had to accept that my being "fearfully and wonderfully made" by God now includes unhealthy white cells, setting me apart from what medicine and science and society recognize as being healthy.

the psalmist explains it this way, a passage i have referred to before, and a passage i sometimes struggle with: "You made all the delicate, inner parts of my body and knit me together in my mother’s womb. thank You for making me so wonderfully complex! Your workmanship is marvelous--how well i know it. You watched me as i was being formed in utter seclusion, as i was woven together in the dark of the womb. You saw me before i was born. every day of my life was recorded in Your book. every moment was laid out before a single day had passed." the struggle is one of not understanding God's workmanship, which for me now includes leukemia cells, and yet is marvelous if i accept how i have been designed. my wonderful complexity has taken on divergent complexity...a challenging one to accept.

my visceral reaction was never to blame God because i chose to accept that my wonderful complexity includes leukemia cells--not "why me?" but "now what?" He made me. He must have a reason for designing me the way He did. He must have a reason for bringing me to this place...a space no one would ever request to be in.

i chose to accept that my leukemia came from somewhere, or i was born with it. i accept that my health care team can detect leukemia cells in my body, except i don't accept that it came from nowhere. "it didn't come from anywhere" they told me. they told me i didn't do anything to get leukemia and i couldn't have done anything to prevent it, but the nagging question remains...

where did it come from? it had to come from somewhere. God must have allowed it to happen. or i was born with it, which means God knew. and if i was born with it, how can it be corrected? should it be corrected? what's normal now? well, it can't be defined in the way we define normalcy, or i wouldn't have cancer. i wouldn't be a leukemia patient. i don't accept that cancer is normal, but in so doing, i imply that God's workmanship in me is somehow flawed because cancer wasn't His original design, especially if i was made in His image. but i haven't blamed God for allowing this to happen or making me this way. instead, i have chosen to accept the various states  to which i have been brought.

my diagnosis carried with it several months of scheduled chemotherapy treatments which, while helpful to kill most of the leukemia cells, didn't bring me to a state of remission, but to this pre-transplant state.

the leukemia patient becomes the transplant patient because her otherwise very healthy body and organs can't survive on unhealthy blood. and for the second time i stand before the limbo stick, only this time the words aren't "you have acute myeloid leukemia," but "you need a bone marrow transplant." in between. again. not defined by the state and place and space i am...but being developed by it.

and so i bend backward from the knees and move shuffling forward under the horizontal bar that is before me, hoping as it is lowered that i can successfully pass from one state to the other, morphing from the space on this side of the bar, to the space on the other side of the bar, but not before being squarely in the middle of transition, as i evolve from this state to the next, never defined by the state, but being ever developed by it while occupying a position at, or on both sides of the threshold.

one philosopher put it this way: "the bud disappears when the blossom breaks through, and we might say that the former is refuted by the latter; in the same way when the fruit comes, the blossom may be explained to be a false form of the plant's existence, for the fruit appears as its true nature in place of the blossom. the ceaseless activity of their own inherent nature makes these stages moments of an organic unity, where they not merely do not contradict one another, but where one is as necessary as the other; and constitutes thereby the life of the whole."

the stages i find myself are not what define me, because the stages change, but the stages are necessary and constitutional for the development of who i am. the stages are spaces between. just like being on this or that side of the limbo stick, or in the process of passing from stage to stage, as the bud disappears, and the blossom gives way to the fruit.

and as i pause under the limbo stick, aware of where i have come from, and knowing my goal is to make it to the other side, i observe what seems to be outside of my passage, realizing that it is the limbo stick that is moving me from one state to the other, not only instrumental but fundamental to my becoming.

the space between...hardly limiting. merely liminal. as i stand on this side, from here to there. and as i look back, from there to here...

2 comments:

  1. "He made me. He must have a reason for designing me the way He did. He must have a reason for bringing me to this place...a space no one would ever request to be in".

    THIS TOO, SHALL PASS!

    ReplyDelete
  2. You have such a way with words! You are an incredible inspiration, young lady!

    ReplyDelete

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