I was a disco angel

Halloween 1997? 1998?

Halloween 1997? 1998?

The late nineties was a good time in my life. You can tell just by looking at this photo how much healthier and happier I am here than when I was on prednisone.

I was a "disco angel" that year for Halloween and can't remember what Amy was! I remember how much I loved working on the halo and dress, though. This was a very creative period in my life. 

And now, all these years later, I believe creativity is a huge part of my recovery.

[WARNING if you're sick - sensitive topic coming up] I don't want to upset people but this next topic is a big part of who I am so I'm going to share. 

My particular philosophy about illness is that it arrives in my life for a reason. While it may be connected to something energetic (for example, swallowing my emotions never bodes well for my digestive system), it can also arrive as a sign post to direct me to a new path.

I gave my first nutrition talk while I was still in graduate school. At the end, I said "in some ways, I'm grateful I got sick because otherwise I wouldn't be here speaking with you."

A woman came up and chewed me out saying that she could never, ever be grateful for her illness because it caused her so much pain - and shame on me for saying this. I felt terrible. I've been wary about discussing this ever since.

My intention is never to shame, or make anyone feel like something is their fault. Rather, it's to provide another lens to view illness that people can adopt or discard. We all have our own way of dealing with illness. This works for me.

It started when I was in high school in the eighties and picked up my mom's book, Louise Hay's book "You Can Heal Your Life." When I got serious about focusing on my health a few years later, I picked it up again.

When I read about the reasons for Ulcerative Colitis, I felt such guilt! Shame! Somehow this is my fault! 

Now I understand that feeling this is a necessary part of the healing process. 

Because once I released the guilt, I could see the upside of viewing disease through this lens.

Well, if my thoughts and emotions are linked to illness, then perhaps I have some power to improve it, maybe even heal it.

This was a pivotal moment in my life. I felt empowered to *do* something about what was happening to me, rather than continue as the passive participant that mainstream medicine prefers.

Do I blame myself for having three cancers at once? Of course not! Do I take responsibility for the way I was handling my life before I was diagnosed? Absolutely. Blame and taking responsibility are two vastly different things.

Do I wonder what I can do emotionally, mentally and spiritually to heal myself now? Yes, for sure. I work at it every single day.

The first thing I did when they found the ovarian masses was look in Louise Hay's book. "Ovaries represent creativity." Cancer is about self-love and self-acceptance. Yep, that sounds like some things I could work on.

I spent so much time pursuing my career in New York City, there was little energy left for actual art. The irony of living among artists and being too tired to create was not lost on me.

The saddest part of my story is that I'd always dreamed of writing a book. I dumped my entire nest egg and all my energy into my kids cookbook between 2009 and 2010.

I had the large melanoma in my leg diagnosed in Sept, 2010. The same month I held a copy of my cookbook in my hands.

I haven't told you this yet but in the winter of 2014 when they were running tests before my surgery, the doctor theorized the ovarian masses had been growing for "about three years."

I knew exactly when they started growing. The same time as the melanoma and book, end of 2010.

There is a difference, I learned, between allowing creativity to flow through me and pursuing it dogmatically at the sacrifice of everything around me - as I did for my cookbook.

What a hard, sad lesson that's been for me.

Now, it is very intentional that I write without worrying about how or where the words should live in the world. I'm not pitching my work, crafting it for a certain publication or wondering how it will be received by the world.

I know it sounds woo-woo, but I consider writing for just ME an important part of my healing and recovery.

I've been in and out of illness for nearly 30 years. And while some people would never consider Louise Hay's book as anything but nonsense, I've been through too much to discount it.

Without creativity, something gets stuck and stagnant in this body. 

Without some forced relaxation and creativity, I really struggle with workaholism and feeling like I always have to "do, do, do" in order to feel valuable and worthy.

My writing feels like a lifeline. Without it, I'm not sure I could make sense of what's happening to me, the trauma from losing organs or becoming disabled. It helps me work through complicated emotions and helps keep me mentally healthy.

I can also see that my writing is a way to honor the womb that I no longer have. It may have not created life, my former womb, but it's inspiring a new life for myself. The one I'm creating now.  

It's also my lifeline to this new self. Every time I post something, real and vulnerable and honest, I feel like I'm walking another step toward the new me. 

It's hard to get go of that old self.

But I can't go back. I can only move forward. 

I may never get a whole body again but I'll take the peace I gain from letting my creativity and writing flow free.

I am making a promise today to myself - and to all of you that I will never stop being creative again.

Much love,

PHOTO #11. This post is part of a series celebrating my life before I lost four organs to three cancers in 2014. It is an “online memorial” honoring the person I was, in the hopes that I can make peace with the disabled person I’ve become. Every day for 30 days until my birthday, I will challenge myself to write a post inspired by the photo I’m sharing. I will not plan the topic or write ahead of time. I will merely look at the photo and write whatever it inspires. Thanks for reading! #julesfor30 #happyrebirth