May 25, 1989

At about this time in 1989 I was checking into the grown-up hospital in downtown Atlanta. I wasn’t scared, maybe a little anxious.

I knew what was happening that day.

I was also eight and a kid. The same age as my own second-grader who I helped on the bus this morning.

It’a my amputation anniversary.

It is a day I remember and celebrate. My amputation saved my life. I don’t suffer from it or feel helpless because of it. I just live my life a little differently.

I’m going to put more pink in my hair and take my kid to her end of the year picnic.

And I’m here to do it because of one surgery that irrevocably changed my life on this day in 1989.

11
Not your inspiration.

 

525,600

Anyone who has done theater since the mid-90’s knows this.  It’s the most recognized song from the show RENT.

It’s the minutes in a year.

And for me, it’s the amount of time I’ve been without my mom.

I’ve had a lot of practice with grief. Years  of losing friends and peers. And what I’ve learned through my practice is that I actively hate it. I’m not good at it. I hate the feeling of sadness, the loneliness, this flesh-eating hole that swallows you up. I know I’ve said before how perpetually optimistic I am. And I am. Grief, that sadness, is the opposite of my optimism. And I think that’s part of the reason I hate it so much.

I had been dreading Thursday for about a month. I stopped looking at my memories on Facebook, seeing where just weeks before she died, my Mom had liked something destroyed me. They were so terribly bitter sweet because I knew what was coming. That Kati before April 13, didn’t know. She was blissful in her little happy world where she was writing, and raising her little family, keeping all of her ducks in a row.

And then death and grief knocked her world off by three feet.

Those first few weeks were like walking through a world I knew, but every thing just felt a little out of place.

But, there is a little relief in the one-year mark.

Because in those 525,600 minutes I have lived through all of the firsts without my mom. I have lived through our birthdays, holidays, random irritations at life, rejections, and writers block. I have lived through successes (both personal and professional) and exciting things, going back to camp, and performing again.

I have lived through them and at times the grief was so overwhelming I couldn’t swallow.

But I made it through this year. And I will make it through the next and the one after that. And though I will probably still reach for my phone and long to call her, I’ve done the first terrible year. And dude, can we all agree that 2016 was a hell of a year to do without someone?

There is hope. And with the hope is the ability to keep writing, keep performing, keep raising my family.

Today I am givin away five books to honor my sweet Mama. 

Head over to my Twitter (@KatiTheWriter) and reply to my thread. At 9:00 EST I’m giving away books! 

Because my mom loved books and I can celebrate her this way.

My Fears

I’ve been quiet here. Mostly because I’ve been working a lot lately. And that’s great. I love working and I love thinking about what I’m writing and all of that.

But also? I’ve been fearful.

 

In 1989 I was on my father’s insurance through his former employer. I had been diagnosed with cancer. I had three rounds of chemotherapy and we were making life altering surgical choices.

Then my insurance company told my parents they were dropping me.

Let that sink in for a minute.

On top of every decision that had to be made then my parents had to find a way to pay for 15 more rounds of chemotherapy (each requiring a hospitalization for up to five nights) and major surgery. Potentially more surgeries. Countless lab draws and scans. Clinic visits. Nurse visits. Prosthetics? Crutches? Physical therapy? All of these things.

My parents were able to come to terms with the insurance company and the employer that they would pay for COBRA. Which, for those of you lucky enough to know, is STUPIDLY EXPENSIVE.

I was mostly unaware of a lot of this going on. Mostly. I could see the tension in my mom’s face. I saw her talking with the billing specialists at the hospital. I heard snippets of conversations between her and the social worker at the hospital.

Fast forward to me graduating college. I was at the Long Term Survivors Clinic at the hospital where I’d been treated. I was graduating from the hospital and moving to the adult world of follow-up care. I was told that it was necessary for me to ALWAYS HAVE HEALTH INSURANCE. Always. If I lapsed in coverage at any point in time I could be denied coverage in the future because of my pre-existing condition.

Then the ACA happened. And even though I’d always had coverage. Even though I had never really been denied coverage (I was denied a C-Leg by my insurance company, but I moved on). I remember breathing because it meant I could ALWAYS get coverage. And not go broke paying for it. That even though I now I had more health complications that were directly related to my cancer I would always get insurance.

But now? All of that is up in the air.

I still have insurance through an employer, but if this repeal goes through. If it goes through as it is written?

I won’t.

And I don’t have a nice way to close this entry. I can ask that you call your Representatives. If you can’t. Fax them.

It’s not about lower premiums or a free market. It is, quite literally, about lives.

Sensitivity Readers

 

To contact me regarding my rates for sensitivity reads please email me at KatiGardner@gmail.com.

I was a voracious reader as a teenager. I read a lot of different books and different genres but my heart (all puns intended) wanted romances. I remember reading books about teens with cancer and I couldn’t get through them fast enough. They were also mostly romances. So for me it was a win-win.

Except sometimes it wasn’t.

The author got a lot of things wrong. Things that someone who had lived it would know. Things like how chemo happened or what the beginning of treatment was actually like. I’d remind myself it was just a book and go on. But, it would always drive me a little nuts. And it gave my friends who read those books bad information. I never really felt like I saw myself in those books. And the bad rep was one of the reasons.

Over the last six months I’ve been doing Sensitivity Reads.

This is the best description I’ve found of what exactly a Sensitivity Reader does. I took it off of the Writing In The Margins website.

A sensitivity reader reads through a manuscript for issues of representation and for instances of bias on the page.  The goal of a sensitivity reader isn’t to edit a manuscript clarity and logic, although that may be an additional service offered. A sensitivity reader reviews a manuscript for internalized bias and negatively charged language.  A sensitivity reader is there to help make sure you do not make a mistake, but they are also NOT a guarantee against making a mistake.

This means I read a finished draft, usually already contracted by a publisher, and make sure the representation of a person with an amputation is done realistically. So, what does this look like?

An author sends me their book. I read it. I send them notes on where they have gotten something wrong about their character who is an amputee (or cancer survivor). I give suggested changes on how to make things work.

Why is this important?

I know I’ve talked before about the lack of representation of people, especially teenagers, with disability and chronic illness in books. It’s one of the reasons that I have chosen to write about those things. But sometimes you read a book and you’re really excited because maybe a character has one leg. Or has cancer. Or something that you can relate to. And then you read it and realize that it is NOTHING like your experience. That the author didn’t do any homework and that they got it all wrong.

It happens.

And it hurts.

There are a lot of people living daily with a disability or a chronic illness and we deserve to see ourselves represented correctly in fiction. I didn’t know it at the time, but I was looking for any book I could see myself in. Any book with a girl on crutches who got to fall in love and star in the high school play. And I never found it. I never found a single book (while I was growing up) where the protagonist lost her leg. Forget the falling in love or staring the high school show.

I write about teens with disability and chronic illness. Two of my main characters have been leg amputees. I still had OTHER amputees read them. We don’t all have the same experiences and feelings. And I don’t want a teenager to read my book and have to say, “She didn’t get any of this right.”

Because we all want to protect our readers.

We want to offer them mirrors and windows.

To find out more about Sensitivity Readers go to http://writeinthemargins.org/

 

BACK UP YOUR WORK

Yeah, that sometimes needs to be yelled.

And I need to tattoo it to my hand so I can see it every time I go to close down my projects.

Last week I was moving blissfully through my manuscript, my word count high, things were going great. I knew that I was in for a truck load of revisions, but I was getting SO close to being done with this MS.

And then on Monday I opened my document.

All was lost.

Or at least a good portion of the new words I’d written lately were.

I did all my searches. I bought software to do more searches and look through the recesses of my hard drive. It was like I just dreamed those words. Almost 7000 words were just gone. Poof.

So, even though you are SURE that your Microsoft One app is syncing and that it’s also syncing to your dropbox and maybe you even have it set to save to your HD. Make sure. Save it. Email it to yourself. Don’t spend your Monday’s trying desperately to find the stupid 7000 words.

But on Tuesday I sat down and I worked. I knew that this MS needed a lot of fine tuning at the front end. My stakes weren’t high enough. I needed to flesh out my other MC more. I needed to fix a relationship problem between my other MC and her family. Losing those words made me sit down and do some of the hard work that it takes to fix it.

So, I guess not all was lost.

 

But seriously, back up your work. Everywhere.