When I haven’t posted anything for a few weeks, there’s always a reason. It’s not likely I lost interest. It’s not likely I have nothing to say. It is most likely some facet of my health has consumed all focus, all energy, all everything just like a black hole.
Sometimes, rather than being a positive force, having such focus is like being lost …
I lose track of time. I lose track of what’s going on around me. I lose track of everything, everyone … even me.
I’ve been encouraged in the past to share my perspective of this journey of being a chronic disease patient with all its ups and downs as it happens. I have resisted quietly … and not so quietly … from doing so and the reason is maybe not what you’d expect.
It’s certainly not that there aren’t things to share … there’s the dreadful experiences, awkward situations, unbelievable indignities, heartwarming kindness, inspirational grace, and so much more.
It’s certainly not that there aren’t people that want to hear about it … there are many people writing about their experiences as they happen.
And, it’s certainly not that there aren’t people that need to hear about it.
I guess I’m just not certain what I think about some of the experiences as they happen to me. I guess I want a little time to get some perspective. And, I guess I want to keep a little of some of it just for me.
That said: Imagine being transferred to a cold and unbelievably hard table in the operating room, furtively trying to grasp the edges of your flimsy and oh-so inadequate hospital gown. There are several sets of hands on you … people that you likely have only just met and hope like hell know what they’re doing. You’re not sure exactly what they want you to do because several are talking at the same time. It’s like you get tunnel hearing as well as tunnel vision.
Everything is overwhelming and it doesn’t help that you’re shivering when they tell you to stay still.
Could be it’s very cold in the room.
Could be you’ve just emerged from a warm cocoon intended to raise your internal body temperature.
Could be you’re scared as hell because you know you’ve signed up for this and it’s way too late to back out even if you wanted to …
Now, imagine you’re leaning over the edge of that cold, hard table, facing someone you’ve only just met, who is holding you firmly because they are supposed to prevent you from falling off the table. Why would that be a concern? Well, the person behind you, whom you’ve also just met, is giving you a spinal. To make it better, to get access to said spine, the hospital gown is thrown to the sides, giving anyone behind you a great view of said behind. And there goes any semblance of modesty.
There is no dignity.
There is only what needs to get done.
Here’s the thing: I’m not just the patient that shares my perspective and experiences. I’m also the patient that has these experiences … the enduring and the processing of what it means to me.
Was it a positive experience? Was it a negative experience? Was it a necessary evil? Was it possible to improve on the experience? If so, how? I would love to be able to answer these questions, I really would.
And, while I appreciate the opportunity to provide feedback on my experiences by the hospital that treated me, I would prefer the time to process what happened, how I feel about it for good or bad.
With time, I heal. With time, I can think again because I’m not in such pain, nor am I muddled because of pain-killers. With time, I pull all the fragments of conversations, situations, and people that surrounded me and a picture of what happened, how I feel about it, and what I want done about it emerges.
I want a conversation … and that can’t happen without giving me time … time to be me and not the patient that has only just emerged from the operating room.
I will share my experiences, my thoughts, my feedback … the only question is will you listen and what will you do with what I share?