Wednesday, April 19, 2017

The Process is the Goal

The process is the goal. I love that mantra and I do my best to embrace it.  Lately though, when it comes to my writing, I’ve lost my focus. I’ve forgotten why I write and who I write for.

Why I write?

Writing down the stories of my life with chronic illness helps me find some sense in the madness that is my life. Writing helps me slog through the clutter and allows me to see a situation from many different perspectives. Writing is also cathartic; it guides me through a jumble of emotions as I search for middle ground between rage and Pollyanna. Hence the name of my blog, Write Down the Middle.

Who I write for?

I write for me. My stories are my thoughts and reflections about moments in my life. And when I am feeling a bit frazzled or melancholy, I can go back and reread a story or two. It’s like giving me my own pep talk. And I can think to myself, “Gee, you really are amazing Kelly Girl! You’ve survived so much, you got this!"

For me, writing is an extremely painstaking process. To quote Ringo Starr, “It don’t come easy.”  It may take me a month to write one 600-800 word story. I agonize over every word; I will read what I have written over and over and over. Did I make my point? Could I say this in fewer words but not lose meaning? I write down all my thoughts; the good ones get to become sentences. Then I move them around like puzzle pieces, kind of like those old sliding tile toys that have one open space and you have to keep sliding tiles back and forth until you get them in perfect order. The rub with writing is there is no perfect. There comes a time when you just have to hit save and send!

When I finish writing a story, it can take some time until I have the fortitude to write another. And in that lull, while I am resting and re-energizing, comes a certain peace, a calm that I struggle to explain. It’s almost like I am empty and then life happens and I start to get filled up with ‘stuff’ until I reach a point of such fullness that I just got to let it out.

By sharing my writing, I have been offering friends, family, and strangers little glimpses into my chronically ill life. My intentions were innocent enough, to gain some awareness and understanding of the illnesses I live with every day and maybe offer comfort to others in the chronically ill community. Lately though, I’ve confused the understanding with approval. When a story I’ve written goes ‘live’, I’ve become like a rat in a Skinner’s box, checking my social media accounts looking for the sweet validation that  ‘likes’ and ‘shares’ deliver. How many today I wonder; none… really? “But it was such an enlightened, earth shattering story! Why haven’t I gone viral?!”

Earth to Kelly- you do not need anyone’s approval! Calm down and go make a sandwich or something. Thanks, that’s some good advice right there! OK, just being a bit silly. But seriously, I really shouldn’t concern myself with whether anyone likes my stories or even reads them because that’s not on me. Lesson learned, I’m going to do my best to be done with obsessing over what others think and what I think they are thinking. While it will always be special when someone finds meaning in my words, that is the gift, the bonus, and it is not the goal. The process is the goal.

Thursday, April 13, 2017

Being my own angel

I originally wrote this for The Mighty in July 2016. I like to re-read it from time to time (especially when I am feeling overwhelmed by a new kink in my health) as a reminder that I am in the drivers seat; I am the one that gets to make the final call when it comes to my care.

As a person living with chronic illness, I’ve had my share of good and ‘not-so-good’ experiences with healthcare providers. While I am ever so thankful for the good, I’ve come to appreciate the ‘not-so-good’ as they remind me that doctors and nurses are not always the gods and angels we want them to be. Just like you and me; they have good days and bad days. They are human. Yet, we hold them to a higher standard; we want their best, 24/7 without exception. We want every touch to be reassuring, every word to be gospel. And we are crushed when our expectations are not met.

The following describes one of my ‘not-so-good’ experiences and the twist I gave it:

It was my eighth colonoscopy, third at this particular hospital. There were so many patients that day! At any given time, a dozen of us laid there in various stages of consciousness, all dehydrated, and barely dressed; as one was rolled out, another came in to take their place.

Though I had come prepared with a typed list of my medications, the nurse thought I was on Remicade (the man in the bed next to me was on Remicade.) When I corrected her, she gave me a ‘what’s the big deal’ eye roll. Another asked me questions from behind a computer screen, I had trouble hearing her and I could not see her face; I had to repeat myself many times. Too many people were asking me too many questions, I felt rushed and nervous.

In the procedure room, two nurses passed items back and forth over me and engaged in a conversation about which exercise was better for weight loss, hot yoga or P90X. Never once looking down at me (or even asking my opinion on the topic.) It was as if I wasn’t there; hell, it was as if they weren’t there! The fact that they literally had my life in their hands seemed lost.

When I was deemed stable enough to be discharged, my husband was sent to get the car. One employee was charged with the task of escorting me and another patient down the hall, onto the elevator, and to the entrance of the hospital to meet our rides. Neither of us was in wheelchairs; we carried our belongings. What if one of us felt ill, passed out, and fell?

The next day I received a follow up call; I told my story. The caller was apologetic and said he would certainly pass on the information. I do not doubt that he did yet I never heard back. Even though I suffered no physical harm or injury during my medical procedure, the course of events that day weighed on me. So I wrote a letter because I needed to let the hospital know that “I did not feel cared for, I did not feel safe”; that there were no gods or angels working that day.

My letter prompted a phone call from the unit manager but not the response I had hoped for, like maybe an expression of shock, an apology, or a promise to do better next time. Nope. All he deduced from my letter was that I was offended by the conversation the nurses were having. Really?! What part of: “I did not feel cared for, I did not feel safe”, did he not get? I hung up the phone totally bewildered, wondering why he wouldn’t admit that I was right and his staff was wrong. The nerve!

The aforementioned events happened several years ago and as I reflect on them, my thinking has changed; if I did not feel safe, wasn’t it on me just as much as it was on them? Sure, they could have done better but so could have I.

Stay with me; I am not giving a pass, I’m reminding myself that I can be empowered, and that I am in charge of my body, my life. I can be my own angel.

I’ve come to realize that yes, while I have a right to expect quality healthcare, I also have the responsibility to define what that means for me. I want to feel free to ask questions, say I am afraid, call the patient escort unacceptable and ask for something different. I now know that at any time, right up until the very last moment before they sedated me, I could have bailed, called the whole thing off. Though such an action would’ve been frowned upon and the fall-out would have been beyond epic, it would not have been the end of the world. I now take comfort in that knowledge.