31 May, 2021

"Separation" by W. S. Merwin

Your absence has gone through me
Like thread through a needle.
Everything I do is stitched with its color.


— W. S. Merwin, “Separation” from The Second Four Books of Poems


25 May, 2021

The Shame

Dear All, 

 Thank you all for the most incredibly supportive response to the news of my surgeries. I never dreamed I would be so uplifted, for I was certain that sharing would bring about responses of pity and disgust.
I have been struggling to confess the full spectrum of this experience for I, like so many people, felt EXTRAORDINARY SHAME. Shame is The Great Destroyer, and Irritable Bowel Disease, or 'IBD' is a disease that thrives on shame; it grows in intensity and strengthens in the darkness-- just like all toxic narratives we foist upon ourselves and project onto others.

As a society we rarely talk about bowel health, and thus bowel diseases (and all conditions like them) take root—and accelerate—in that silence.

I wavered when it came to posting a photo of myself with my ostomy, honestly portrayed. But I realized that the image was powerful, in two ways:
     1. Perhaps someone out there needs to know that ostomy-life is not so bad, it is, in fact, a GIFT.
     2. Although I bid farewell to my bag and stoma yesterday, I felt it was important to hold myself accountable to the shame I felt by posting a photograph of The Truth below my clothing. I had to proudly display my body in an empowered way to prove to myself (above all others) that there is nothing to be ashamed of.

By sharing our truths (however challenging), we shed light upon our shame and it shrinks. It shrivels. We take our agonies and they are identified with, supported, lightened somehow. We are not alone. We do not have to live in the shadows or on the sidelines of this one glorious life.
Thus, here I am: talking about it.
Secret-keeping is how shame transforms into viciousness,
and disconnection.

Thank you for giving me the gift of feeling less isolated, for your blinding goodness, and above all, for connection. Connection is the great reward of vulnerability.

Onwards with courage and integrity. 💜

© Emma Mead


24 May, 2021

J-pouch surgery news

 [CW: surgery, disturbing images]

After nearly 7 years dealing with severe Ulcerative Colitis, on November 30, 2020, I had my entire large intestine (aka, the 'colon') completely removed.

I wanted to share this news from a more processed  place, with radical honesty.

The last 6 months has been an awe-inspiring *three-surgery process.* It has cured me of ulcerative colitis PERMANENTLY. Though the experience has been psychologically confrontational, horrifying, inexpressibly painful, and awe-inspiring, every aspect has felt truly miraculous. TODAY is the first day of my healthy, ostomy-free, colitis-free, flourishing life.

Here is how is went:

- PART 1 (Nov 30, 2020) — total removal of the large intestine 

- PART 2 (March 1, 2021) — creation of what is called a “J POUCH” out of my small intestine, to ultimately serve the function of a “new colon” 

- PART 3 (May 24, 2021) — the attachment of the J-pouch to the *traditional exit* with the only evidence being a scar. Freedom.

 Science is *AMAZING.*

This procedure is extreme. My medical team and I did not make the decision lightly. Colitis can be a brutal, rabid, greedy, relentless jerk. Mine was the giant jerk-kind. And it was often—though I never ever wanted to admit it to myself or show it to the world—life-destroying.

Oh friends, I never wanted to complain. I possess perspective upon the horrors of the times we live in— and acknowledge that SO many fellow human beings are struggling. I wish to be a source of light.

But truth be told, it has been hell. I’ve lost a so much. I’ve also learned and grown and gained a great deal. Wisdom is earned.
Life is both.
Life is all.
I crave, and humbly ask for your shared humanity.

Today, I underwent my final surgery!
This was a life CHOOSING surgery, as much as a life SAVING one.

Thank you to Dr. Sergei Khaitov, my colorectal surgeon.
Mount Sinai Hospital.
Mama Silbs.
And too many close friends to name.

I write this from my hospital recovery bed in floods of grateful tears. I did it.

Onwards with courage and integrity,

Al x


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