#MyEndoMarch #EndoWarrior #WhatWouldLoveDo?

edited (and crazy long).

An update: Valarie Kaur read this post and commented (below) and plans to share it forward. Yay!

This post has been more than 6 months in the making. You see in a surge of excitement that I received a response to an email I’d sent to Valarie Kaur,* I immediately wrote a complete post based on her encouraging me to do so (more on this below). But now months have passed and I’ve posted a ton on a variety of other topics in the interim. Yet I’ve never cleaned up and finished this post. While in many ways it was cathartic to write, when it actually came time to polish and post it, I just couldn’t bring myself to do so.

I’ve tried and found it impossible to pinpoint the root cause of my hesitation. But after spending some time digesting Brené Brown’s teachings, I conjecture the origin is somewhere near the crossroad of vulnerability and shame. Well in the event that’s the case, then it is even more important – critical even – that I complete this post and get it up and out there. Why? Because I believe Brene Brown’s work to be truth.

She’s conducted years of research on vulnerability and shame and she believes “shame is lethal.” In her research she has found that “…true belonging only happens when we present our authentic, imperfect selves to the world, our sense of belonging can never be greater than our level of self-acceptance.” She goes on to theorize that “If we can share our story with someone who responds with empathy and understanding, shame can’t survive.”

Well I believe her, so here’s my story…

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Back in May 2013 *Valarie Kaur appeared on The Melissa Harris Perry Show (MHP Show) to discuss the attention surrounding Angelina Jolie’s decision to undergo an elective mastectomy. After thorough consideration and with professional consultation, Angelina, a #warrior, made the decision to have a mastectomy based on her having a specific breast cancer gene together with her mom’s battle with the illness. - I want to take this moment to send healing light and love to everyone whose lives have been touched by that insidious disease. - Thanks to Susan G. Komen and the prolific pink ribbon campaign, it’s not uncommon to hear about breast cancer in film, television, and TV news.

However only once before, and not since that MHP episode, have I heard anyone on film or television or [television] news utter the words endometriosis or fibroids. The one previous reference that I recall was on an episode of one of my all time favorite shows, Girlfriends, where the character Maya had a myomectomy. (Myomectomy is the surgery to remove uterine fibroids.) In that episode Maya was attempting to conceive and fibroids prevented her pregnancy. If memory serves, Maya was not able to conceive even after the myomectomy. …some women go on to do so and some cannot.

On that MHP episode, Melissa and Valarie felt it important to make mention of lesser-known women’s health issues. Melissa shared her experience with uterine fibroids and the decision she made to have a hysterectomy. (Hysterectomy is the surgery to remove a woman’s uterus. It can be a partial removal where ovaries are left or complete.) Valarie shared her experience with endometriosis as well as her multiyear story to be accurately diagnosed. It’s worth noting that many #EndoWarriors share a similar tale of having known something is wrong for months or even years, seeking treatment from a variety of physicians, then ultimately being diagnosed in a crisis, only to be told by every doctor thereafter, “the earlier the diagnosis the better.”

After that MHP episode I read a blog Valarie authored and posted to The MHP Show website entitled Attention to Women’s Diseases Should Reach Beyond Angelina Jolie. In it Valarie calls women to action: she shares that women must “…organize and strategically tell their stories to break down access barriers for all people.”

So wanting to act but not knowing how, I wrote to Valarie and she graciously wrote me back. In our exchange we talked about our excitement about the Million Women’s March on Washington for Endometriosis in March 2014. Then somewhere in her multi paragraph response Valarie shared the following, “…In the mean time, I think finding brave new ways to tell our stories about the disease helps diminish shame around the issue and encourages other women to step out as well. Posting essays and reflections on blogs, circulating stories on social media, and joining groups of other likeminded women is certainly a place to start.”

So that’s why I write today. I write to tell my story. I write because as Brené Brown says, “If we can share our story with someone who responds with empathy and understanding, shame can’t survive.”  And I’ll tell you one thing, this is nothing to be ashamed about. In fact it’s quite the opposite. So where to begin?

My earliest memory of just knowing something was off was in 1999. I remember being told by physicians, “you’re healthy as a horse,” “you’ll have to pay another copay (as in I’m not using this visit to investigate your concerns),” and whole host of other silly things. Then, in 2007 (8 loooooong years later), when I was finally diagnosed with uterine fibroids they were huge. Now I’m a petite person and I was told they were the size of a five-month pregnancy.

So I knew I had to have surgery but I put it off as long as possible. Then in 2010 (eleven looooooong years later) I had my first myomectomy (an open one) during which I was diagnosed with endometriosis. I guess the hard part is that all that time, in all those years, was not all bad. However, the times that were bad were excruciating and debilitating and scary as hell and life altering in the sense that I made life decisions based on my fears of my future physical condition.

It’s also worth noting that, due to the size of my fibroids, my first surgery didn’t go so well. Now I don’t recall as much as those who were not on serious drugs at the time might recall. But I do recall, very vividly, the statements the doctors made to me as they rolled me into an emergency second surgery late that evening. I won’t go into all that here, but know that I knew that saving my life was the primary objective. So when I woke up in ICU the next day, I had a ton of questions because I didn’t know what all they had to do.

Thankfully additional internal stitches and five blood transfusions and platelets were enough. So then I spent that day and the next in the ICU with amazing professional care and with friends visiting and playing games all the while I was getting hangry (hungry + angry – I’m especially #2) as hell cause they would not feed me until certain physiological conditions were met.

To date I’ve had three-ish surgeries in four years: an open myomectomy w/ an appendectomy because apparently I’d had an appendicitis but missed it due to my freakishly high tolerance for pain** (what can I say, I didn’t feel well the week before, but I kept it moving #EndoWarrior), a laproscopic myomectomy in 2012, and a hysteroscopic myomectomy in 2013. (I say three-ish because my first surgery resulted in my need to have that second surgery that same evening.)

There is so so so much more to this story that I’ll have to post a part two at some point but for right now I want to shift focus. I’ll be honest it’s because I don’t want to think about the pain**, the fear, or the ridiculous crap some licensed physicians did or did not do to me. But it’s not just that I don’t want to talk about it. I also wish to shift focus because, as I sit here and reflect on the past and the stress that fibroids and endo have been, I am also very conscious of a parallel tale…

…And this will sound absolutely crazy: I am unbelievably grateful to endo and even for past days of excruciating pain.** Why the hell?!: Because that pain taught me how to lean. And I am extremely grateful to endo, and for those days of past excruciating pain,** for showing me beyond a shadow of a doubt who in my world can and will support my weight when I’m leaning:

  • I’m thankful for the people who allow(ed) me to call, even in the middle of the night, when I wasn’t feeling well.
  • I’m thankful for those who have been willing to take me to and from the doctor when I could not take myself.
  • I’m thankful to those who have held my hand on my way into surgery and who have been there when I woke up.
  • I am thankful to the ICU angels from surgery number 1 (and 1b). Seemingly a prerequisite to being an ICU nurse is to be one of the best people on earth.
  • I’m thankful for my friend who taught me to meditate and who continues to meditate with me from time to time. Sometimes meditation is/was the difference between me leaving the house for the day or surrendering to pain for the day. Meditation is wicked powerful friends.
  • I am thankful to my kitty cat, Grace Anne, who just knows how to take care of me when I’m not well. #PetOwnersGetThis
  • I’m thankful for and to the people who cooked for me and cleaned for me or just sat with me.
  • I am thankful that I have a somewhat flexible job and an understanding team and supervisor.
  • I am incredibly thankful that I have good health insurance. And I am thankful that, going forward, I cannot be denied health insurance due to my pre-existing condition thanks to The Affordable Care Act.
  • I’m thankful to all my doctors and all the surgeons. The latter many of whom I will never know.
  • I am thankful for an amazing encounter with a phlebotomist who transformed my experience with blood draws.
  • I’m thankful for my newest doctors at the Boston Center for Endometriosis. They performed my last surgery in July and have a different, positive, energy around these issues than I’ve experienced with other doctors in the decade previous.
  • I am thankful to Lisa and Laura and Dr. Z. I am thankful for CBT because “I’m not always in pain.”
  • I am incredibly grateful for the many people in my life who never make me feel like I am a burden.
  • I am thankful for and to those who gave me cash to take a taxi when I had to go home, bringing me peanut butter (because PB&J is my power pellet) when I ran out and couldn’t get it for myself, sending me quotes and words of inspiration and cards and flowers and cookies, driving me around town when I just needed to get out, driving my car when I couldn’t drive it home…
  • And on and on and on and on and on and on…

Now do I wish that I’d been able to discern these things on my own without the help of endo? Absolutely! I’m not crazy and I’m not going to lie and say, “I wouldn’t trade this…” …cause I would trade it for some things. But I will say this: endo separates the cowards from the brave. It can bring you to your knees and really show you what you’re made of. Also endo sifts out the ride-or-die from the punks. It has a way of showing you who is going to be there for you no matter what. And it provides a thorough answer to the question, “What would love do?”

So for me #MyEndoMarch is about my extreme gratitude for having people show up for me over and over and over again in ways you could not imagine. So I guess like anything else, it’s not all horrible right?! And, suffice it to say, I have an impossible time feeling afflicted when I am surrounded by so much love.

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*Valarie Kaur is an award-winning filmmaker, civil rights advocate, and interfaith leader who centers her work around the power of storytelling. She is the founder of Groundswell at Auburn Seminary, a non-profit initiative with 100,000 members that equips people of faith in social change. She has led national campaigns responding to hate crimes, racial profiling, immigration detention, marriage equality, and solitary confinement. Valarie is a prolific public speaker and frequent political contributor on MSNBC to the Melissa Harris-Perry Show

**I’m not (nor was I) always in pain. And really since my last surgery in July 2013, I’m never in what I consider pain – just a little discomfort here and there. #ThankYouJesus & #ThankYouBWHCenterForEndo

Brené Brown quotes from Daring Greatly: How the Courage to Be Vulnerable Transforms the Way We Live, Love, Parent, and Lead

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  1. 2 thoughts on “#MyEndoMarch #EndoWarrior #WhatWouldLoveDo?

    Thank you, Tamia, for your courage in sharing your story! I’m moved by your shift in focus to gratitude — naming all the people and moments that have helped you grow and connected you to love. I feel the same way about my journey. If it were not for my endometriosis diagnosis, I wouldn’t have made the major life decisions that bring me where I am today. You show why sharing our health stories is important — they not only raises awareness about little-understood illnesses and show other women they are not alone. They also show that with enough love and support, we can face down our greatest fears — and emerge stronger. Thank you.

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