WARNING: This post may not be for everyone because I discuss difficult topics like death and suicide. If you are having thoughts about hurting yourself or others, I URGE you, please, to seek professional help, tell someone you're struggling, be honest about your pain.
I know, I know, this title sounds super scary IF you're able-bodied. Many sick peeps would simply say "yup."
Let me explain before the word "death" triggers a totally negative connotation.
Because frankly, I'm tired of feeling afraid to discuss Death and even, Suicide in our culture.
If we can't talk about them, how do we work through our feelings about them?
That I'd like to discuss. Although today I'm not going to talk about Suicide. Because that deserves it's own attention. Before I set it aside, let me be clear: I am not suicidal. If my body did break down to the point that I felt it could not be healed, then I will tell you I'm considering taking care of business. I'd chronicle the entire journey (well, not the ENTIRE journey, I'm loud but not THAT loud that I can holler from the Beyond!). Plus, you KNOW I'd have a huge fucking bash to end all bashes before I went that way....
Back to Death. I promised you truth.
This is some ugly truth.
When you live in a broken body, it is completely understandable that you ponder what it would be like to no longer be living in a broken body.
Yet, I rarely see it discussed. And I so badly need to see it discussed!
It's a huge part of this journey - thinking about what it means to LIVE. Thinking about what it means to LIVE in a broken body. Thinking about what I want to do with my time left here. Wondering what I want to leave behind. The legacy I hope to keep alive.
These are the things I think about. I realize more and more that the urge to publicly share my writing and even do videos is a way to feel like I will continue living on, no matter what.
What? You may be wondering. But she looks so healthy....
I know. Super confusing.
We'll get to the details around why I look the way I do another day. Today I will say this: I look this way because I working super fucking hard at keeping my INSIDES healthy and the byproduct of that is looking healthy on the OUTSIDE.
EVERYTHING I do is an effort to maintain cellular integrity, keep my biochemistry chugging along at optimum capacity, improve mitochrondrial function, trying to prevent cancer cells from replicating despite my genetic condition that does it's best to replicate them, leverage whatever part of my digestive tract IS working as much as possible.
It can be strange to hear a perfectly normal looking person discuss Death. Part of understanding my world, though, is knowing that these two realities can co-exist. That I can look totally healthy and also have organ systems that are slowly breaking down inside of me.
From a clinical perspective, I am well aware of this paradox.
LIVING it is a completely different experience.
How long can I keep doing this? I keep asking myself this.
How long can I replicate parastalsis so that my intestines (barely) move the food through?
How long can I keep giving myself IV bags to keep my body functioning?
How long can I eat this monotonous diet of barely nothing? (Which, of course, isn't that apparent in my frame due to a slowed metabolism from menopause and chemo. Annoying under normal circumstances but this sluggish metabolism is probably saving my life.)
How long can I fight my own government from killing me?
How long can I navigate our over-burdened medical system in an effort to figure out what's wrong with me?
How long until more cancer arrives?
How long will each organ system remain functioning?
HOW MANY YEARS CAN I COPE WITH PAIN, ISOLATION, STRUGGLE AND UNCERTAINTY?
I was feeling a lot of despair on Monday night. I found out that I will lose my Blue Shield health insurance coverage in January. Washington Regence Blue Shield is pulling out of the exchange. This administration delivering it's promise to destroy our fragile medical system which is dependent on the whims of the for-profit insurance industry.
Getting this letter devastated me.
It was all too much.
Our democracy slowly fading away. People tired of fighting. People in denial. People forgetting that other people aren't that different from themselves (on BOTH sides).
It's a lot for anyone to take. But you can imagine how hard this must be for sick people.
I made several videos chronicling my pain and epiphanies throughout the evening.
I can't bear to watch them. Maybe I'll put them up without watching them. And cringe later when it's too late.
I know I shared something that will be hard for all of you to hear. I felt like writing it would be easier:
Death would be easier.
I realize this isn't that surprising given what I deal with. I know I'm not alone in thinking it. However, it doesn't make it any easier to hear it out loud. Especially from me.
As my lovely friend said to me last night, "but...you represent the Good Fight. If we lose you...."
I know this. I know this deep down way past my bones.
Remember how I told you that I make public promises in order to ensure that I'll follow through on something? Like how I told everyone I was going to write a cookbook? So then I had to do it.
I realize now that sharing that very first colon polyp with you in December, 2013 might have been one of the most life-saving acts I've ever done.
By bringing you into my journey, I made myself accountable.
Accountable to hundreds of people that I would keep fighting.
The kids. And you. My community. That's the only thing keeping me going right now.
When I first started giving myself IV fluids earlier this year, I'd panic if I did something wrong. The port needle leads straight to the heart. Air bubbles in the tubing could kill me.
In just a matter of months, I don't bat an eyelash. Ha! A bubble killing me after all this? I laugh to myself. Whatever.
The government carting me off to prison? The government not allowing me access to medical services? FUCKING. BRING. IT.
You want to kill me, Corrupt Mobsters? DO IT. The Resistance can then use my Death to further the Cause.
I'd be a proud, peaceful woman knowing my pain could help in some tiny way preserve our democracy.
I say all this. But please know, it doesn't mean I want Death to happen tomorrow.
But it means that I wouldn't be all that sad if it did.
It must be so strange and bewildering coming from me. I'm so full of life, vivacious, grab the bull by the horns kind of personality. Even I have trouble seeing this new version of myself.
I've battled so many health issues over the last 28 years. But this. This is new for me. To feel like I could walk into battle and truly not care if I come out.
I wonder sometimes if I knew deep down that I'd only get a finite amount of healthy "good" years. Why I lived the way I did. Wanted to see the world. Live in New York City. Not settle down.
As if I knew that I needed to collect as many outlandish, crazy, life-packed stories as possible into a short amount of time.
That's where I keep ending up when I have these conversations in my head. Ok, if I really only have a year or two left, what do I want to DO with that time? I always come back to the same answer: Balls Out. Even if it takes more coordination, organizing, and preparation.
I still want to climb Macchu Pichu, even if it means carrying dozens of IV bags with me. I want to visit where my family comes from in Greece. I want to eat Mexican food. In Baja. I want to take the kids on cool trips.
I recognize that a lot of the despair I've been feeling is from immersing myself too far down into my medical case and politics.
I have to find ways to maximize the pleasure and joy I still CAN experience for however long I have left. I think about how people took breaks during war. And how precious it must have felt.
Why do we have to be at war or in crisis to figure out what's truly important to us?
Why do we have to experience so much pain to arrive in this place?
Why is it so hard to make that bucket list and then ACTUALLY DO IT.
It's a lot easier said than done. Even for someone like me.
It's work. Finding joy is work. Experiencing pleasure must be intentional.
I'm making a commitment to that right now. Right here. Today at 11:13am Pacific on July 5, 2017.
I, Julie Negrin, hereby promise to find joy in as many moments as possible and pursue joyful experiences whenever possible. I commit to letting go of stupid annoying shit that I love to complain about. This day and forever more, I will make a commitment to writing down cool experiences that I want to do and finding ways to make them happen.
Even now, with my back against the wall, the clock ticking, I still have to force myself to find joy.
That's how hard it is.
But I'm still going to find ways to do it.
Even if I have to drag myself around with coolers full of food and IV bags.
Even if I break down crying from exhaustion because I did more activity than I could handle.
Even if I have to hibernate for days in bed after doing something that brings me joy.
Because that's the thing I haven't told you yet.
I know that my resistance work, traveling to find doctors, and going to parties may be benefiting my psychological state. But it's really, really hard on this fragile body.
Pursuing democracy, medical answers, and joy may end up shortening my life.
I've decided that I'm ok with that. Whenever Death arrives, I'll be ready for it. I'll know that I did everything I could to prevent it. And that I did everything I could to soak up every last second of this Life while I'm still in it.
Maybe I had to seriously consider heading into Death before I understood what it means to truly Live.
Maybe. Just maybe.
I can do this.