There’s a high chance I won’t share this, mostly it’s just for me to get it out before it eats at me slowly but surely.
I think it’s tough when you have spent years living a type of nightmare but it’s become so real you have convinced yourself this is how normal people dream- then all of a sudden you experience a real dream and you are unsure how to react.
Maybe it’s just a natural thing to have something positive happen to you or around you that natural instinct turns to the negative and immediately you look for unexplained negative holes in what is actually a very happy event.
For as long as I can remember I have wanted a kidney because truthfully that’s what everyone told me to want, as a child I just did what I did and never knew any better I didn’t know I was sick, people told me I was, I didn’t feel sick, I felt the same way I’ve felt for as long as my little memory could remember. So you tell a child that’s feeling fine, no child you’re not fine, you’re very sick and about to die. You then expect them to change their entire perspective because in the next minute your strapping tubes to them and sucking out their blood.
Flash forward about 10 years, you do it again, here’s someone having convinced themselves now that yes they are sick and ready for a new adventure everyday in the hospital that no, things are different Denisha, you’re getting a kidney. You strip them of all they have grown to know and wait for a reaction.
I’ve never known that a kidney will make me feel better, cause think about it- I never understood that I was sick, to begin with.
As ungrateful as this sounds I have to tell you when you’re sitting there 3 months into a new transplant and everyone is telling you you’re better now the numbers are great, nothing but disbelief lines the curves of your mouth as you vomit out words trying, seeking desperately to be sick again- because heck that’s all you have ever known.
So with each new appointment, every pain every ache is exaggerated, but the same answers come back- Denisha the numbers are great the kidney is great, you’re healthy now.
I can tell you honestly, I don’t know what healthy feels like, I don’t know how I’m supposed to react or feel or behave.
One day you cut me open, I look down at this huge bulge in my stomachs
then you say I am okay now.
What is okay?
I don’t understand.
I don’t know how to react to your questions or your looks.
I only look to you all for answers, how to react how to be what I’m supposed to do.
Just because I woke up today with this gift it doesn’t mean I feel okay yet.
I was just getting used to the last story you told me but again once I began predicting the ending you changed the plot you added new characters and the ending has become uncertain.
I’m still trying to figure this out. It’s not easy getting a new transplant or finding your life is changing again beyond your understanding or knowledge or control- some days you sit around going what where am I? How did this happen?
It’s just a new ball game, I have insomnia even worse than before, I have aches all around my body, I depend on these drugs that often take away whatever I think is left of me, my hair is falling out and my hands are trembling as I type this.
I’m not ungrateful, I do not crave dialysis but just know this takes time, all of it takes time. I am not trying to be your inspiration or someone for you to look up to, I’m a person made up of elements of several other people.
Nothing is a quick fix, just as you told me I was sick and I adapted to those demands as a child so too will I learn this story and maybe one day I will get the courage to narrate the next chapter.
~November 25th, 2017 (my 23rd birthday)~
This was three months ago. I’m only sharing this because I realised for anyone to read this blog and understand what life is really like with a chronic illness, I have to do more than sugarcoat what is actually a devastating & hard process. There are two sides to every person’s story. The second I shared what was going on instead of pretending I was okay – I found someone willing to help me and here I am the healthiest I’ve been since I was born.
We all wouldn’t be alive without our parents, as a species, we depend on each other and this connection establishes the world that we exist in, whether we choose to hide from this fact or not. I want to take risks this year- and that includes breaking down my own walls- sharing the truth- to help connect those that need help to those willing to give it.
Here begins the start of a new journey, a new life filled with new goals.
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