disease | Melanie Bates

This one goes out to a dear friend who battled breast cancer this year. Battled? Hmpffff… She smote it down and pissed on its ruins. And to another who’s dear to me who’s heading in for his final treatment for melanoma that showed up first on his face, and then in his brain.

This also goes out to those I love who’ve lost those they love—fathers, mothers, brothers and sisters, a child.

And this goes out to all who’ve been diagnosed with dis-ease, who’ve ended relationships, who’ve lost jobs, and who’ve battled… Something. Anything.

It all started at the end of 2014 when me and my lovely friend, Lisa M. Hayes, were discussing what a crap year we’d both had. We commiserated and compared our crappiness, and then she said, “You and I need to get together and script out a 2014 obituary. You know how it goes. Everyone is always awesome in an obituary!”

Say What?

She asked me to write to her about all the craptastic things that had happened to me in 2014. I’ll spare you the gore and give you the gist. My letter to her was three pages, but, in essence, it included things like having a full hysterectomy after three prior surgeries and fifteen years of suffering with Stage IV endometriosis, and how I felt empty and as if I were now Crone at the age of 44. It also spoke to being diagnosed with rheumatoid arthritis and how I woke up, more often than not, limping and watching my toes spread and curl underneath themselves like the sister in Pet Cemetery. There was also a death in the family… My guy admitting himself to two different psychiatric hospitals for extreme anxiety and PTSD… My computer (lifeline/workline) dying, then my fridge with all its contents, blah, blah, blah. Suffice it to say, I let it all hang out on those three pages—”the good, the bad, the ugly, “and even the insignificant.

Then… over the next few days, Lisa crafted this obituary for me of The Year 2014:

Like most of us, Melanie was only hoping for a happy and healthy new year. She was ready for some ease and flow when 2014 arrived. However, before the cute of the baby year ever wore off, she realized she had a year that was less cuddle and more morose teenager in disposition. Like anyone dealing with a morose teenager, it’s often hard to see that what’s hiding behind the Goth makeup and disturbing music lyrics is a creative mastermind and mad genius.

2014 had its own plans for Melanie and itself. Luckily for Melanie, ease and flow wasn’t really on the agenda. 2014 was not about the status quo and rebelled against anything that didn’t have real meaning. It knew that Melanie had been longing for more depth and true connection in her life. It knew something about Melanie she hadn’t been able to see for a very long time. It had been years since Melanie had really danced with her own greatness. 2014 knew that Melanie was secretly very tired of things that looked good but didn’t feel real, and it was very impatient with her. 2014 couldn’t understand why Melanie insisted on playing in the shallow end of the pool. 2014 was fucking sick of Melanie standing in her own shadow.

So it knew, it had to give her the gift of losing the two things most precious to her, certainty and her identity. When 2014 said those words, “certainty” and “identity” it always put air quotes around them and smirked because 2014 knew a few things Melanie didn’t about those things.

As 2014 started to mature and became less morose teenager, and more mad genius, it still got in a lot of trouble. 2014 got caught spray-painting graffiti all over the inside of Melanie’s life. It seemed to have a penchant for vandalism and destruction. 2014 made Melanie give up huge swaths of her identity to pay its bail when it was in trouble. It stole her certainty with her most important relationships right out of Melanie’s purse when it was bored. 2014 even beat her up more than once when it was in a rage, leaving Melanie’s body “broken.” <— Again, in air quotes. At the time, all of this looked only like madness. The genius part of the plan was less obvious, but no less important.

At the end, 2014 looked a lot more like an aging hippy with a very satisfied smile. It knew it had done its job perfectly. Melanie was not broken, she was a blank slate. It would be the job of another year soon to come to nurture her through finding her real identity and that was perfectly fine with 2014. That wasn’t its style. What 2014 knew for sure was Melanie would never stand in her own shadow again. Melanie wasn’t in the shallow end of the pool anymore because 2014 had forced her to swim into the depths to save herself. 2014 was more than happy to leave Melanie there, swimming in the depths. It knew it didn’t have to feel good to be a truly great year.

I cried like a lil’ bitch when I read it. Not only was I buoyed by a different perspective, but I came to love 2014. Really. It shifted something for me that is still in motion to this day.

So… if you’ve had a year chock-full of crap, I highly recommend this process to you. Ask a friend, or someone dear to you, to write an obit for 2015 for you. Share with them all the craptasticness that happened and let them go to town. (Or, as my friend Chara suggested in the comments below, write your own!) Then please do share your experience of it in the comments below. I’d so love to hear from you.

May 2016 be exactly what you need.

Bright and early Monday morn, I head to the doctor to discuss my proposed total hysterectomy. The doctor wants to talk with me to find out if he will tackle the procedure or, due to my case history, pass it along to another surgeon. I guess it’s a hot mess up in there and he’s not so sure he wants to don his scrubs.

And… I’m terrified.

As my long time readers know I’ve suffered from Stage IV endometriosis since before my breasts really came to be (truth be told I’m still waiting for them to fully show up, but alas…) I won’t get into the gory details of my dis-ease, but I’ve written about it at length here and here. I will say that I’ve already had three surgeries due to this beast and all that remains of my reproductive organs is a lone ovary that’s been trying to pull my hormonal load, uphill both ways and in five feet of snow, for about ten years now. Surely it must be tired.

A recent ultrasound has revealed that I have more cysts, and a build up of what is likely scar tissue, and I’ve had bouts of bleeding for weeks at a time as of late. The continuous bleeding wouldn’t be such a deal breaker if the word ALERT hadn’t shown up next to my anemia lab results. I’ve been taking iron and bio-identical progesterone, but if my levels don’t increase substantially before the surgery I’ll need to get an iron infusion beforehand.

But… this isn’t the half of it. During every cycle I have the added bonus of waking up on random mornings looking, and feeling, like Quasimodo after a night of too much revelry at the Feast of Fools. It’s wholly perplexing to me, but right around that “time of the month” I will find myself unable to move an arm because my shoulder joint is so inflamed, or it will just be a finger which won’t straighten so that my hand ends up looking like a crow’s claw, or one of my wrists will act up and I won’t have use of my hand at all. For days. For a week. Sometimes more than one joint at a time. The pain is fucking Crazy Town and, apparently, I’m the mayor.

I alluded to what’s been up with me in my blog: An Ode to Sugar (from an Addict) wherein I discussed the fact that I had cut the white stuff out of my life. The real deal is that I’m working with a team of Functional Medicine docs for the next six to eight months to help me in managing the four auto-immune diseases I’ve got going on: Endometriosis, Hashimotos Hypothyroidism, what is presenting as arthritis, and another one that’s attacking my brain which I don’t know much about. (I wrote about my thyroidectomy and Hashimotos in my blog: Is Your Inner Critic an Asshole?) The gist of it is that I’m on an Anti-Inflammatory diet from hell and working to manage my flare-ups by watching my diet and taking supplements. I’ve gotten real close with quinoa, millet and turkey bacon.

Suffice it to say, I believe that my Functional medicine team thinks that the hysterectomy might help improve my quality of life and have a positive effect on some of these other conditions. My OB/GYN also thinks it’s time to get rid of the whole lot. If I had no other gauge but the look on her face as she read my past three surgery reports that would have been enough, but add to that the fact that the surgeon isn’t even sure he wants to tackle the case and I’ve got “proof” for days that I need to do something. We did discuss ablation (think mushroom cloud of annihilation in my womb), but as I consulted my best friend Google for case studies I found that endometrial ablation was often a failure and that, “women aged 45 years or younger were 2.1 times more likely to have hysterectomy. Hysterectomy risk increased with each decreasing stratum of age and exceeded 40% in women aged 40 years or younger.” Yeah, not so much. I don’t want another failed surgery which leads to a hysterectomy anyway, thanks.

We also discussed Lupron, but I was very adamant about the fact that I didn’t want to gain forty pounds and commit suicide.

My boyfriend and my family are on board as well. They tell me that they wished I would have had a hysterectomy years ago as the endo had made me infertile anyway, but the benefits of my own hormones stopped my doctors from performing it. (Well, there was also the doc who suggested that I get pregnant, breastfeed, get pregnant, breastfeed, ad infinitum, but he was from Utah.) I actually asked for one during my third surgery, but there were complications. My mother also suffered from endo and after her hysterectomy at forty she felt amazing.

I’m on board. At times I actually feel excited to be done with the whole thing and I imagine myself wearing white pants every day and prancing through a field of yellow tulips with So-Kr8z nipping at my heels. At other times I spend a little too much time with Google and end up terrified that it could ruin my health which, to be frank, isn’t all daisies and roses at the moment. There are so many women on the web sharing their stories of hysterectomy and the flowers they’re running through have wilted for sure. Many women are worse off than they were before. Their endo clears up for eight weeks to a year and then comes back. Others, who also suffer from arthritic flare-ups around their menses, have a worsening of joint pain after their hysterectomy. The dreadful reviews go on and on. And on…

Most days I don’t know whether to “scratch my watch or wind my butt.” I’m honestly so torn and I have so many questions:

Will my vagina dry up like the cracked earth of Africa during drought season?
Will I still want to allow my guy’s penis anywhere near me?
Will I gain twenty-five pounds?
Will I find myself deep in the “Pit of Despair.”
Will my bones whither away until they’re the size of cocktail toothpicks?
Will I commence peeing my pants during every guffaw?

Dear sisters, if you’ve had a hysterectomy (or know of someone who has) will you please share your stories with me – the good, the bad and the ugly? I’d really love to hear from you as I tap in to make this decision. And if you have any experience with any of my questions, please let me know that too. I’d be supremely grateful.