I felt like an alien

This photo represents exactly how I feel inside and have felt inside my entire life.

Like an alien. A dorky, awkward adolescent with antennas that everyone can see.

I think this was 1981? I must have been 10 years old. In the backyard of our house in Redmond, washington where I spent my formative years. i still have dreams that take place in that house.

I think this was 1981? I must have been 10 years old. In the backyard of our house in Redmond, washington where I spent my formative years. i still have dreams that take place in that house.

I feel a lot more like this girl than I do the woman I posted yesterday, all dressed up and socially acceptable according to American cultural standards!

I know I'm not the only one that gets locked into a certain perspective of ourselves that we carry through life, even when we've outgrown it years before.

The challenge of trying to find our authentic selves gets harder and harder as we get older and feel the pressure of family and society telling us what we should and should not be doing with our lives.

We stuff down our dreams. Our feelings. Our wishes for a different life.

Until we can't even remember what they were to start with.

When I was in second grade, I wanted to be an artist and a psychologist! Now, at 45 years old, I'm using my art (writing) to share ideas on how to cope with pain (not quite a psychologist but as close as I'll get).

But what did it take to arrive in the place that I've been striving to get to my entire life? To get back to the dreams of a young girl, which represents more of our true self than any other age?

Just losing four organs and becoming disabled. That's all.

Why is it so damn difficult to stay the course of what we really want out of life?

Over the last few years, since I've been sharing my own emotional difficulties throughout the cancer journey, I've had more than one friend pull me aside and thank me for being so honest about my struggles. They tell me about the challenges they are going through. And why it's a relief to them to know they aren't the only one struggling.

So let me tell you now. YOU ARE NOT THE ONLY ONE STRUGGLING.

We've all been walking the line for years between what we should and shouldn't be doing. Putting in long hours at work, paying our bills, posting our near perfect photos on social media, comparing ourselves, judging ourselves, wondering why we don't have what "they" have.

Guess what? They are THINKING THE EXACT SAME THING.

Nobody's that fucking happy. Let's just put that out there. Especially these days.

Even if they have a nice home, a nice job, and a nice spouse and mostly nice kids, THEY ARE STILL STRUGGLING. Why?

Because life is fucking hard, that's why.

The human experience is inherently difficult.

It's why we're here. To experience challenges and to grow.

We aren't here to float through life and never feel the sting of betrayal, pain and loneliness. 

Those are uniquely specific human experiences for a reason. 

They force us to become introspective, to evaluate our priorities, to learn to accept whatever shit sandwich life is handing us at the moment. 

If we never struggle, we never grow.

If we never feel pain, we never appreciate our pain-free moments.

If we never hit rock bottom, we never rise up to find our authentic self.

A comfortable life is a lovely life. But it's not what helps us develop our most beautiful edges, the parts of ourselves that make us unique and interesting and might I even say gorgeous.

The human body can experience enormous pain. And enormous pleasure.

Our spectrum is wide. Our experiences varied. 

Without the human body, we can't luxuriate in the first bite of a decadent piece of chocolate cake.

We can't throw ourselves in a cool lake on a hot day.

We can't orgasm until we're seeing stars.

We can't snuggle with adorable little bodies while reading bedtime stories.

We can't hike to the top of a mountain.

We can't do a lot of things.

Now that I live in this body that doesn't work right, there are so many experiences I wish I'd appreciated and had before things went south.

I wish for others to not have to learn the hard way like me.

I wish for others to remember to stop for a moment and truly enjoy whatever they are eating. Really, stop and savor the flavors that light up their taste buds. And luxuriate in a beautiful meal surrounded by beautiful souls.

I wish for others to run outside in the sunshine, sweat dripping from their brow, their muscles feeling strong. And enjoy the truly extraordinary experience of being physically healthy.

I wish for others to take a long shower and enjoy the hot, clean water that we are so damned lucky to have, running over their shoulder, cleaning away the day and the stress. And remember how lucky they are to enjoy something as simple as a shower that I only get to do once a week now due to the bandage on my chest. The rest of the week are awkward half showers and baths. 

I could not have anticipated any of this beforehand, even with prior knowledge regarding my family's genetic legacy.

I could not know how fortunate I was to have the healthy years that I DID get.

The irony is that if someone had just taken me off wheat and dairy at the age I'm at in this photo, it might have prevented a cascade of events that have led me to where I am now.

Such simple knowledge. Yet so powerful.

We can't look back and wish we knew something we could not have known. I want to go down that road so badly - and I have, many, many times - but I have to stop.

There is no point in beating ourselves up for things we didn't know.

I see now that an important step in accepting the present is letting go of the past. Whatever we thought we knew or didn't know, none of it matters. Whatever choices led us to where we are now made us who we are today.

If I didn't continue eating wheat and dairy, I would not have gotten Ulcerative Colitis. And I would not have ended up as a nutritionist and cooking teacher. Which was one of the greatest experiences of my LIFE.

If I hadn't lost the four organs, I may not have had a loud enough voice to fight so hard for the Affordable Care Act.

Our pain can lead us to the new - and hopefully improved - version of ourselves, as hard as it is to see when we're in the thick of it.

I'm crawling to this new version of me. I have for many months now. I am not jubilantly skipping to a new and improved self-actualized existence.

Getting there is painful, and slow, and hard.

But so far, I can say it's been worth it.

Worth throwing off the shackles of expectation. Worth being yelled at on the Internet. Worth the loneliness that I must endure in order to find these words.

We can only find ourselves if we're willing to let go of the old self. It requires slamming the door shut on the past and living in the terrifying limbo of nothingness for a moment. 

That's where I exist now. As the next chapter reveals itself.

I look at this photo of my adorable chubby cheeks and my little belly getting ready to sprout into a woman, and I see that we're all ready to grow into the next chapter of ourselves. At any given moment, we are ready to sprout.

We just have to let it happen. The pain is from preventing it from happening.

The pleasure comes from finally making the leap.

Much love,
Jules

PHOTO #2. 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