Warning: Long rambling post.
Two years ago:
My life literally ended. I died, but I came back, twice.
My life changed. I had no choice on the matter. you die, things have to change one way or the other.
I had necrotizing fasciitis and septic shock with organ failure. There are (roughly) 325.7 million people in the United states. There are 20,000 necrotizing fasciitis cases a year. Only 3,700 of them survive. One of them was me.
A month in various hospital rooms, of needles of being mostly dead, drugged, racked in pain, and fight to just live. Of surgeries, and needles and nurses and blood work and my body being pumped with so many things I can’t even remember them all. Of blood transfusions, and IV’s and not knowing at times if I was ever going to be leave. There is no modesty anymore. I lost that when my hospital room was full with 16 PT students, 5 nurses, Op nurse all got a good look at my naked body as they took pictures of every inch of me for records.
Three months on a wound vac, of having tubes hanging off my body, of being an injured octopus, and chancing out sponge and tape, of getting an allergy to tape leaving blisters on newly formed skin.
Six months of wound care, of in home nurses, bandages, tape, feeling like a science fair project gone wrong.
Sixteen months of PT, learning how to function in a world that is not made for anyone with out two working legs or any disability. Learning how to do things all over again, having to gain strength to brush my own hair, to walk, to push myself up to sit. Learning to use a walker because my balance was so bad, to relearn to move cause I was gutted like a fish. to learning to walk with a cane. To making that your new normal.
Did you know that when they remove muscles in your tummy, you never regain them? That you are then permanently dealing with the lost of your muscle? Let me tell you, it sucks ass.
It’s been two years, and still the moment I tell what I had, to everyday people, to doctors, nurses…
And they all react. Doctors stare and re read charts, and step back, ask to see the scars to poke and prod, calling in other doctors, nurses as they all and look at the havoc that is my body. Nurses mouths drop, shock, surprise.. being called the “girl who lived” like I’m some sort of Harry Potter creation and not a real human being.
Since then every year, well the two that have been thus far, for the week prior I have this sense of dread, this weight on my chest and I find myself looking over my shoulder more, internally scared more. Last night I busted into tears for an hour after realizing that at that moment two years prior, my organs were already starting to shut down, that I dying and no one even noticed I was dying.
Every day, I fight my own body to move to walk. Some days I barely have the energy to get up and walk from my bed to to my office to sit. Every day I am in pain, some less then others. Every day I fight the anger I am dealing with in side of me.
I don’t mean small amounts of anger, that fade away, I mean this deep set, hungry rage that just sits in side of me like an unwanted leech that makes me pull away more. Not at people, at my own body, that it betrayed me. That It failed to do it’s job. I get angry every time I see that damn cane that is like a permanent part of me, every time I have to take another pill, every time the pain gets so bad that I have no choice but to take another pain pill. When I look at my face, and see the half joker scar on my right side of my lip from the breathing tube I had in on and off for a week, because my lungs had failed. Every time someone comments on why I’m a problem when I dare to go out, to go shopping for basics.
I have heard so many people say “ oh you are an inspiration, and you are so strong or my favorite” you’re okay now right?
I fight the urge to scream at them who think that I am milking this, that I can’t still be using a cane it was just a little infection.
My Life, the one I knew, the one I loved.. walking to farmer’s market, going to Walmart solo, being able to do anything on my own that I wanted is gone, and that is my new normal.
I fight daily to just try to be what I used to be, to smile though the pain and the anger, to push past the need to cry and hit the thing that did this to me.
I am angry. I have the right to be pissed off and scream.
I am lucky too. To have people who love me, tell me to let the anger out..to rage and cry and that it’s okay cause I’ve got every right to be pissed off too.
I look at the ones who have been here, holding my hand, tying my shoes, helping me dress, driving me to appointments, wiping tear, healing me.. supporting me and I am overwhelmed by the love and care and support they have given me over the past two years. Care packages of beauty products, Annie’s mac and cheese, cards, flowers, a can of elder berry mead, a rose angry orchard (which are being drunk tonight.)
There are a lot of them but I’m touching on a few stand outs.
The grove: it’s not one person but several. They have arranged things so I can attend events, to be a part of things, to help as I need, but respect that I need to do things on my own. To red hand prints, first swims, mermaid moments, glitter, elderberry mead,”angel paths” and being my family of choice. ( Amy, Rebecca, Alizah, Katelyn, Kelsey, James, Issac, Lindsey, April etc) From the sparkle fairy to you: I love you guys.
To Carolyn, my best friend of 30+ years. My rock. The person who seriously has been with me though every up, down and
deep dark pit. The light that has never gone out. You have not once judged me or said you were disappointed in me. To cards, to flowers, to prayers to love that has no definition.
To my husband, E: You have been here though it all, thick & thin, good bad and right down shitty. We have faced so many things and you are still here, supporting me, holding my hand and always telling me I got this and when the anger or the tears over when, you then hold me and let me cry it out. You are amazing.
I am grateful to be alive, but I am still human. I fight anger, depression, my own body.
I am falling apart some days, I face the financial issues that come with surviving something that kills so many people. I deal with the stares and questions, but I am still here. I still look to see the good, sometimes it’s harder to see then others, but I do still try.
I think everyone has words that people use to describe them. I think, going off of what those around me have said over the past 40 years I think I have my five words that are me:
Tenacious, Brave, Beautiful, Tough, Strong. As a bonus: bad ass unicorn.
I am me, and while I am dealing with so much on my plate emotionally, I am still glad to be here.
I’m alive. After cancer, after NF, after a childhood of abuse, after challenge after challenge, I’m here; standing, fighting. just now I have a cane to swing if I have to.
If I am an inspiration, remember, you inspire me right back. That I wouldn’t have the strength to keep fighting if I didn’t have people to support me, love me and sometimes smack me and tell me to get my head out of my ass and pay attention.