My Endo March
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."
Originally written November 4, 2013.
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“Valerie shares that women must '...organize and strategically tell their stories to break down access barriers for all people'.”
Back in May Valarie Kaur appeared on the Melissa Harris Perry Show to discuss the attention surrounding Angelina Jolie's decision to undergo an elective mastectomy. Angelina, a warrior, made the decision to have a mastectomy based on her having a specific breast cancer gene as well as her mom's battle with the illness. I want to take this moment to send light and love to everyone whose lives have been touched by that insidious disease. Thanks to Susan G. Koman 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 TV news utter the words endometriosis or fibroids. The one previous reference was on an episode of the incomparable show 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.
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. Valarie shared her experience with endometriosis as well as her multiyear story to be accurately diagnosed. Many #endowarriors share a similar tale of having known something is wrong for months or years, seeking treatment from a variety of physicians, 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 she calls women to action: Valerie shares that women must "...organize and strategically tell their stories to break down access barriers for all people." 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 Brene Brown says "shame cannot survive being spoken and being met with empathy." So where to begin?
My earliest memory of just knowing something was off was in 1999. When I was finally diagnosed with uterine fibroids in early 2007 they were huge. I'm a little person and I was told they were the size of a five-month pregnancy. I wasn't diagnosed with endometriosis until I underwent my first myomectomy in June 2010. That's eleven loooong years. I guess the hard part is that all that time in all those years was not all bad. However, the ones 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 physical condition.
To date I've had three-ish surgeries in four years. I say three-ish because my first surgery resulted in my need to have a second surgery that same evening when apparently I bled out and needed five blood transfusions. What's amazing about the surgeries is that while others were very stressed out over my condition, I have very little recollection of most any of the surgeries. I have little flashes of memories but with those meds somehow even the hours leading up to surgery are somewhat erased.
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 I don't want to talk about the pain, the fear, the ridiculous crap some licensed physicians did or did not do to me. But it's not just that. I also want to shift focus because as I sit here and reflect on the past and the curse that fibroids and endo have been I am also very conscious of a parallel tale.
Most people see me as a pleasant and happy and positive person. Except in times of excruciating pain when I just can't hide it, I think I do a very good job of covering up the sometimes-daily pain of this chronic illness. This is going to sound absolutely crazy but I am unbelievably grateful to endo, and for those days of excruciating pain. That pain taught me how to lean. And I am extremely grateful to endo, and for those days of excruciating pain, for showing me beyond a shadow of a doubt who in my world can and will support the weight of my lean.
I'm thankful for the people who allow me to call, even in the middle of the night, when I'm not feeling well. I'm thankful for those who have been willing to take me to and from the doctor if 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 one/two. 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 the difference between me leaving the house for the day or surrendering to pain for the day. Meditation is powerful stuff friends.
I am thankful to my kitty cat who just knows how to take care of me when I'm not well. Pet owners will understand.
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 a pre-existing condition thanks to the Affordable Care Act.
I'm thankful to my doctors and all the surgeons - many of whom I will never know.
I'm thankful for my newest doctors at the Boston Center for Endometriosis. They performed my last surgery in July and have a different 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.
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 going to lie and say I wouldn't trade this. I'm not crazy.
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 flushes 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.
I guess like anything else, it's not all horrible. And suffice it to say I have an impossible time feeling afflicted when I am surrounded by so much love.
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.