According to family lore, I used to say "Mommy I weird?" when I was around two years old. Somehow I sensed I was different even then.
Fortunately for me, I've been lucky enough to find kindred spirits along the way who not only didn't mind my weirdness but encourage it.
This photo is from college. I can't remember the details around this photo but I don't think it was Halloween - my college roommate Shannon and our gang always wore much more elaborate costumes. It's quite likely we painted our faces for no reason at all.
We were weird like that.
I think one of the reasons I chose a Peter Pan lifestyle and/or lived in NYC and California is because I wanted to continue being weird whenever I felt like it.
I got a taste of it in college which was the first time in my life where I didn't feel like I had to BE a certain person. I didn't feel like I had to be the Nice Jewish Girl, or the Responsible School Athlete, or the Devoted Family Member.
I just got to BE.
And I never wanted to stop being ME.
As challenging as it's been over the years, I strangely don't regret the choices I made. I wonder if they were good decisions. But I don't necessarily regret them.
Tech industry jobs. Marriage proposals. Anything stable. I ran in the opposite direction from anything that would hold me back from evolving into whoever I was supposed to be.
Sometimes I would get tired, hit a rough patch, and I would attempt to tiptoe over to a "normal" life. It never lasted long. Something bananas would happen that would knock me back onto that path.
The path of an artist? The path of an advocate? I DON'T KNOW.
That's the hardest part now. Is the not knowing. I used to love the anticipation of not knowing what would come next in my life. Now it's just scary.
I have no idea what's coming next or how long I'll be around or how long until another cancer or how long until something else breaks down or if the government will try to kill me again or if I'll ever be able to work full-time again....
So many unknowns. Not unlike graduating from college and having no idea what's coming next.
That's one thing I miss about being at that point in life. It's not the perky breasts or the gorgeous hair I envy when I see young women.
It's that optimism, that belief that their life is going to be awesome somehow. Or, at least that they will achieve what they want to achieve.
There is a reason why so many people have mid-life crisis! It's that slow, sinking realization that life isn't working out as planned AT ALL. Maybe some of the pieces have worked out. But many have not.
It's a bitter pill to swallow.
I envy that about my young students and twenty-somethings. Some of them may have had something painful happen at a young age.
But many of them have not gotten to that jaded place that's inevitable by mid-life. I miss that. That naive belief that somehow it's going to get better and better until I finally lead the life I've always imagined.
That's been taken away from me. When the surgeon cut me open and removed my insides, I lost any chance of leading the life I've always imagined. The traveling to exotic places, the sampling of different cuisines around the world, the freedom to do what I want when I want.
And I'll never get that back. No matter how much I get a handle on the fluids and my digestion, I have to make peace with the fact that I'll never reach "normal." I may get better than I am now. But I'll never even get back on my old gluten and dairy free diet again - that sounds dreamy now.
This makes me incredibly sad.
Some days, I wake up and I forget. Even after all this time! I have that 30 seconds between sleep and wake, and I imagine making a big bowl of granola, yogurt and macadamia nuts. Or, my mind will drift to some sort of potatoes and eggs brunch.
Then I fully wake up and reality intervenes.
The truth comes rushing in, and I feel like I'm plunged into an icy cold bath.
It's hard. This realization is really, really hard. Not having kids. Requiring fluids, Being dependent on others. All of these things, I can handle and will make peace with if I haven't already.
But never getting to eat so many types of foods ever again?
I'm trying to work with this reality. I tell myself that instead of being a food person, I will be an artist person now. And an activist person. I must release that food person and instead embrace that strange artist I was in college.
The quirky woman who would paint her face before leaving the house.
And rollerblade hanging onto the back of UPS street down University Ave.
And bike down the middle of 50th street at midnight, drunk or stoned or both.
And ride on top of a station wagon (fondly called the Woody Wagon) in an eastern Washington desert.
The list goes on and on.
The good thing about this post is that it's reminding me of that fearless young woman who didn't think twice about doing something wild and unpredictable.
I may have lost the ability to digest food.
But I must appreciate the fact that I have tapped back into that old version of me that didn't give a shit about what I was "supposed to do" or "not supposed to do." The fucking expectations that reared up to it's highest point in my thirties is so damn suffocating. I'm over it.
The world is changing fast these days. I'm changing fast too. We all are.
We don't have time for oppressive expectations anymore.
Perhaps we're not realizing that along with the death of civility - and my former digestive system - other antiquated expectations are dying as well.
It's been horrible watching our world shatter this past year.
It's been awful watching my life disappear these past three years.
But maybe something better IS coming along. For me. For all of us.
The possibility that maybe life could end up better than before...is so delicious.
But so hard to imagine.
And yet, for even the few minutes that I'm working on this post, I can feel the tiniest amount of hope.
It's a minuscule, and barely flickering. But it's still there.
I have to hang onto it as hard as I can.
That belief that it can and will get better.
It's what keeps me going. I think it's what keeps ALL of us going. Isn't it?
It's the key, I think, to making it through the tough times.
I guess deep down, no matter how sad I get - and I can get really, really sad - I do believe it's going to get better.
Damn hopeful hippie that I am. I still believe....
I believe enough for all of us. I really do.
PHOTO #5. 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