So, it’s 6 35 am on December 16, 2018.
I’m listening to music on YouTube, reading Facebook, trying to get sleep.
Then, I read a blog post from a ten year survivor of NF, and I read it once, then twice then I have to pause to think, to consider her question to the group I am in that supports mentally, survivors of NF and caretakers and mourn those who did not make it.
Her question, which I am sure you want to know was this:
“How is it that it takes a part of your soul, too? “
I had to pause, and think about this for a minute and I realized the question was wrong.
The Question be:
“How do we keep going when it steals apart of your soul?”
I say that is the question I need to ask, because, I know part of me is gone, and I’m never getting it back, not the way I was before.
Now before anyone thinks I’m being poor pitiful me, you can just toss that idea out.
This is me, telling you my story, my feeling.. how I feel about all of this.
I’ll put it like this:
Before, I was a pretty vibrant, active human being. I could get two weeks of food in 45 minutes solo at Wal-mart easy, no help. I could even put everything away solo. I could easily do the dishes, do the laundry, pick my cat up with no strain. I was able to walk to Jon market for something, and I could even easier walk tot he farmer’ market to by fancy goat cheese and a snow cone. I could clean my old apartment solo and run and get the mail. I could go to Ren fair with out worrying out my body is going to function while I’m there and my biggest worry for a day trip was keeping an inhaler in case something goes wrong. I was loosing weight, and wearing my first ever designer jeans, and sporting bold two toned blue hair and I was looking forward to going swimming with people a month later right before my 39th birthday. I had no worries and I was happy.
Then I died, NF came, Sepic shock… and every thing went insane.
Now: It’s a daily routine of countless meds, and needles and dealing with pain, and gritting my teeth and pretend everything is good when the pain is almost too much to bear. I fight depression and feeling as if I’m not worthy of the fact Iam here when so many did not make it. Walking hurts, my cane is always close by forlonger things, Walmart is still on the power cart because It’s too much to go though walmart solo yet.
Good things to have discovered: My strength is real, and I’ve earned it. I finally believe I am tenacious, as my friend Carolyn has said for literally years now. I have a good strong group of friends who actually love me and support me and have my back even when I’m in the weeds. My marriage is strong, and my partner in my life has never stopped being here, though out the roller coaster ride. I no longer care if anyone likes me, as long as I like me.
Things that hasn’t changed:
I am a smart ass, sassy, swearing, unicorn loving glitter wearing diva of awesome. I am still a pagan who loves her patrons dearly, and respects them. I still like Taylor swift songs and dancing in my office, just now, it’s in my chair.
The question was” how does it steal part of your soul?”
my question was” how can it not?”
In my case, I died. Organs began to fail, parts of my body were removed as my cells betrayed their normal purpose and mutated to try and keep me dead.
I firmly believe that death, and returning from it, changes who you are, changes how you see things. I appreciate things I took for granted before; Things like rain, walking, showers, lipstick. Before, I took things for granted, and let things bother me faster. Now, if a pan get burnt or I burn cookies, I shrug it off, cause over all..it’s not that big of a deal anymore.
I also want more out of life, not just for me but for others now, because I have realized how fucking lucky and blessed I am to be here.
So yes, NF stole part of my soul, however I think that missing piece made me be grateful for what I have left.
NF has taken so much from me, but what is left, is stronger, braver a hell of lot tougher because I’ve seen the worst place for a human to be at, and unlike so many others, I’m still here, and I’m still fighting.
I won’t say I am not bruised or not tired on more days then I want to admit to. I have scars, and wounds that may never heal from all of the fighting to be. However, my scars show I lived. My bruises, cuts scrapes and open wounds show I am not giving up. My tears show I still have a human heart that feels for others and yes, mourns for losts both personal and of the world left behind.
So the answer to my question, how can it not steal part of your soul? The answer is clear: It did, it does.
The question is now, what do you do with what you have left?