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Why I Want to 'Be Seen' for the Challenges I Face With Illness


Today I want to celebrate. And the truth is, I’m too exhausted. Too tired to celebrate or feel satisfied.

I have crawled across some make-believe finish line of the past month, which has left me tattered and torn, strewn on the ground reaching for a cup of water.

In the fantasy of my mind I thought I’d be standing on a podium of my own achievement, medal in hand, adoring crowd, with everyone aware of what I’ve accomplished and done. Oh, doesn’t that feel good? I can feel the perfect beam of sunlight landing on my face now, lighting me up and I’m able to take it all in. (In this scenario I think my skin is even sparkling a bit, like one of those vampires, and also I have a dress made out of fire, like in “Hunger Games.”) So magnificent.

My glory moment of surviving the last month with autoimmune hepatitis.

It’s what I deserve, to be seen.

But unfortunately, there’s no podium, no medal, no crowd.

I feel like I just pulled back the curtain to see the wizard is actually just human. I’m just human. And no one seems to notice. In the scenario of what feels like a reality, I’m standing on 5th avenue in NYC asking for food, and everyone passes me by without looking. Cold, grey, uncaring.

Let me make this clear — this is not the glory moment I wanted. I’ve been trained for awards and applause, sparkles and fire. And instead it feels like I’m getting a broken wizard and grey blah.

In truth, today, my glory moment is unexpectedly quiet. I’m being offered time alone to celebrate, quietly, with myself.

I’m the only one who really knows what I’ve survived this past month.

And I’m the only one who can truly see it.

Sigh.

Two times in the hospital.

Medical bills that make my head spin.

One job I work to have health insurance, which destroys my soul a little each time I go there.

A doctor appointment with great news.

And foreshadowing of more challenging procedures to come.

Three presentations at major conferences, one at a university.

Talking about things I hold so dearly to my heart.

***

More hours spent with my person than I could’ve hoped possible.

Quality time with family and friends.

A brave decision to give myself more space and time by lowering a commitment.

Feeling broken, filled back up, broken, full, broken, full.

The brilliance of a fleeting moment being in the present.

And yet, it’s not enough.

I want more.

I want someone to see me!

Don’t you? I want the crowd!

I want people to really know what I’ve gone through, as if they were somehow me. People who really get it. To tell me they’re proud of me. Oh, I feel how I crave it.

But the truth is, it does not matter who sees me if I can’t see myself.

I’m the only one who will really know what it’s like to be me. If I can’t breathe, take in the joy and the pain of surviving another month in this body, in this lifetime, no one else is going to be able to make me feel that. I get to do this for myself. 

So I accept what is right before me. A day of personal silence and quiet, to tell myself I’ve done so well. To sleep in, meditate, write… do some movement, eat my favorite foods. To tuck in with a cup of tea and say, dear one, I’m so proud of you.

And as I do this, I realize all the people that have actually told me this over the past month. But I couldn’t hear it yet, because I hadn’t told myself. I needed to believe it first. If I didn’t believe in myself first, no one else is going to be able to say it in a way that I could believe it.

We need to see ourselves first before we can take the “good stuff” in from anyone else.

Don’t worry, I totally get it. Seeing ourselves for our accomplishments can be the hardest thing.

So today, would you be willing to try to say: hey self, good job! To see yourself, just about one little thing? I know you did something worth being seen for. Getting out of bed, organizing a closet. Maybe it feels funny, or fake, but I’ll try it with you. We can tell ourselves together, OK?

Because when we see ourselves, we can let in more from everyone else too.