Thursday, May 22, 2014

NO! NO! NO!

When I set out to do something, I intend on completing the task. Even if I have failed before, sometimes breakthroughs are just around where one would imagine their breaking point to prevent further motion of this vehicle called "Purpose".

Eventually, when I set out to enact "Purpose" enough times and it crashes and burns because the Failure Wall is, well, still very much there, I start to reserve some realistic ideas that I may not find any success after all.

I was diagnosed with gastroparesis in 2007. Gastroparesis does not inevitably get worse with time. I've said that before, and I will say it again: the condition of gastroparesis in and of itself does NOT get worse with time of its own volition. If you are like me and there are other problems that could make general motility worse over time, you may or may not go through my similar experiences.

I recently started up the vehicle of "Purpose" again, and as I rode the back of it, this is what I expected for the next forever:


(Hyperbole and a Half at hyperboleandaHalf.blogspot)

And I'm all excited. I am coasting hills, feeling much like free falling. I don't know if anyone has ever been bungee jumping, but at an amusement park in St. Louis, MO (two hours from where I live) my uncle signed himself, my cousin Jessica, and me for an adventure called a bungee swing. I was ten, and had just completed the fourth grade. I would have to consult my uncle for how large this infrastructure really was, but this thing was massive. Big, tall, almost unreal. If I had to compare it to anything, I would guess it was at least fifteen stories high.

But I was ten. I am not sure of the specifics.

It was huge enough that it coasted a pretty penny to ride. The three of us were bundled together belly down, then lifted with cables all the way to the top. Even being the daredevil I am (how else would I have the guts to try crazy things over and over again?), when we reached the top and they tilted us head first at the ground, I sent a prayer up to the heavens because I really thought we might die. I think my uncle may have told us that if attraction malfunctioned that we would surely die. He may have said it more than once.

My family is amazing...but we are all crazy.

When they let us go, that ground coming so huge so quickly only for the cables to snatch us up was what I soon learned was how victory feels. It is terrible, and it is the most gratifying force of nature that compels me to keep pushing forward.

(My mother screamed watching the video footage when we came home).

Needless to say...I had and always have had high expectations.

However high my expectations and hopes, there is the fact I think I am finally realizing that it doesn't matter the amount of data I collect, the psycho-babble I force into my head to remember has awful mantras that taunt me relentlessly, and enough well wishes to fill the entire ocean (so that I am swimming in a sea of platitudes): if someone had cut those cables, I would have died. 

In essence, I keep riding up a figurative bungee swing, alone, so many times that now everyone think I am a total nutcase. Each and every single time, in comparison of my body being able to process food in any form in any part of my GI tract...I would be dead. I probably would have been dead several years ago. The mere fact that I am very much still alive is a mystery that I apparently don't appreciate very well, because I keep making the same mistakes with the same equipment. But with what is going on with me, I have almost no boundaries! No one knows where to go from here! This is almost a pathological need to keep doing something because I don't know how I would react to defeat. How I would react when letting the words that have already been spoken sink in...

"We're out of options..."

...I fear that I may hearken unto Madness and I won't ever find my way out. I will be lost in a current of tears. Or I'll pass out whilst hyperventilating (that's happened before. I would recommend trying to breathe. Nothing more embarrassing than being hospitalized for throwing a fit), whichever arrives first.

Needless to say, the permission is revoked. There were three criterion and I blew it. Or, rather, my body did. This creates some problems with being able to tell the difference between my spiritual "self" and my physical body. 

For the first time I am realizing the differences between what an illness feels like from a physical standpoint that has not been benefactor of contribution by the psyche. I cannot describe the sheer terror that overwhelms when the breakdown by their own professionals that just because I very badly need elements of this to be behavioural so I can change it doesn't equate to it being so. I cannot, in fact, force my body to use substance it doesn't know what to do with. I would be the same if you decided to switch from eating edible things to eating clay, glue, and plywood.

Not only does it look silly, it gets dangerous.

So am I OK with these conclusions?


At the heart if the matter, I understand that this body is bent on something I have no control over. That my doctors cannot treat. The only option is the transplant clinic at U of Nebraska at Omaha. Even that's not a surefire answer, and I still have to weigh out benefit and risk, considering the painful reality that my own survival during/after is shaky at best.

I do understand that the only behavioral component in this who messy plight is my insane attempts to keep agreeing to be lifted up a towering infrastructure only to remember, while I am hurtling  toward an unforgiving ground. So with this, I am hereby agreeing, to all of you, that I will make no further attempts at using a gut that no longer functions. Even though I am using a lot of metaphors, there is raw truth that remains: each time that I "fall", a little of my real and not metaphorical at all "Hope" starts to fade. 

"Purpose" is a locomotive. It's something that gets you from one situation to the next.

Hope is homing ground. So here I will finally set this weary body and mind where Hope is found, before I lose it all.

And that loss would have been something I could have stopped from happening...and I did. So here I find rest, making the best of a confusing and heartbreaking circumstance, surrounded by other confused and loving people.

When I was ten on that bungee cord, I sent a prayer up into the heavens. I wasn't always sure if there was a point until much later. I only became aware as that prayer began to yield fruit...a seed cast down in desperate hopes that I would survive. To my own shock, it has.

Note: I want to thank my best friend Caroline for being in my life. Without her, my need to interact with others like me would never have been fulfilled. I also want to thank the GI dysfunction and dysautonomia communities. Without them, I would have lost my marbles long ago. 

To the Oley foundation support forum: This forum is my home, but only because you all accept my insanity and call it an endearing quality. Thank you for always accepting me for who I am.

For Allie, Kris, Brandis, Cortney, Jodi Lynn, Jen, River, Andrea, Shayna, Nicole, Amy, Pax, Kaylee, Heather, Ann W, Carissa, Jordan, Karin, Jenna, and many others who have been true friends in this battle that feels as if it is ever losing...thank you for showing me that even if the odds aren't in our favor, that none has to bow down to demands of science and showing me what reasonable looks like when I am starting to think nutty thoughts again

Finally, to Caroline, James and Patricia, Barb, Mom, uncle Roger and cousin Jessica, uncle Dave and aunt Elaine, my brother Dalton, my father Rick, my Palmeri family, Doc Rob, my CSS Mary, Jason and The Parents, my sis Jerri, my homecare nurse Susan, Dr. Ovais, Dr. Petersen, Dr. M. Dick, and the various caregivers at St. Mary's and New Horizons...thank you of saving me from death by broken heart. You are everything to me.

Let's see what happens next...

No comments:

Post a Comment