#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.

—————–

*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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Evolution of Berklee Caf(e) Shows

unedited.

Last 150 Caf Show #1 Last 150 Caf Show #2

Saturday, December 14, 2013 at 10:00pm was definitely (probably) absolutely (well maybe) the last Caf Show in the 150 cafeteria. It’s worth noting that due to construction delays and the small potential that sound checks scheduled for January will not go well, we may live to see a 150 Caf Show again. For that reason, and that we know students are more excited about the opening of the new caf than the closing of the old one, we in the Student Activities Center did not make a big deal out of Saturday.

However I made a point to share this probable milestone, albeit late, with a few students, staff, faculty, and alumni. I also made a point to attend that show myself. So what group will go down in history as the definitely (probably) absolutely (well maybe) last band to rock the 150 caf?! That honor went to Winston’s Maccow’s Boy Band ensemble in a show they entitled Evolution of the Boy Band. *Band members can found here.

While I’m currently Director of Student Activities, my role for my first three years at Berklee included supervising the Caf Shows team. While my primary responsibility was Orientation and I loved doing that, it was the opportunity to work with Caf Shows that sold me on moving from North Caroline to Boston, in the middle of the winter, to work at our amazing College. One of the top reasons I wavered on moving from my previous position, Assistant Director of Orientation and Student Support Services, to Director of Student Activities, was knowing that I would have to leave the role of Caf Shows advisor behind. Since passing the torch to Luke Sutherland, Student Activities Coordinator for Orientation and Organizations, Caf Shows has continued to grow by leaps and bounds.

I say all of that to say that I have a unique perspective with respect to the Caf Shows student organization. I was their advisor when they made the switch from Cafe Shows (with an -e-) to Caf Shows. I was their advisor when they first introduced lighting to their production. I was their advisor when they switched the setup from presenting to the right (as you walk in) in front of the salad bar to presenting on the left (as you walk in) underneath the overhang. And I was their advisor when they presented their first SpringFest on the Prudential Center Plaza on Saturday, April 24, 2010.

Ok since this isn’t about me, let me switch gears and talk about the actual show which I’ll begin by saying was fantastic and so much fun. The show included choreography by student Jared Jenkins Sr, a 7th semester student from the Washington, D.C. area. Jenkins’ choreography matched the style of the performer(s) that made each number famous. For added effect the band created a makeshift backstage area just off stage right using DIY pipe and drape. There they made a few Clark Kent style costume changes including a b-boy urban look for the opening numbers to tailored black suits for the Temptations “My Girl” and a few songs that followed. Let me tell you I know how tight it is back behind the band so I have no idea how the five of them made those costume changes happen but they did.

The performance began with the Beach Boy’s “Surfing USA.” It then hit the Backstreet Boys “I Want it That Way” and Boyz II Men’s “End of the Road” along the way. It culminated with my personal fav, Michael Jackson’s “Blame It On the Boogie.” The Boy Band ensemble with their amazing instrumentalists, complete with a phenomenal horn section, did their thing to rock the crowd. And I can attest that the crowd responded enthusiastically.

So many positive things about the Caf Shows program stood out for me on Saturday night but I’ll just share three here:

  • In existence for 26 years, the program makes the best out of the whatever is given to them: despite the whirring of the soda and soft serve ice cream machines, there being no backstage changing area, or really no stage at all, through the years this crew has made it work and well.
  • The student staff on the Caf Shows team take good care: without knowing I was present for the show peering down on them from on high (the balcony), I witnessed from that clandestine vantage the care and attention the student staff take to manage the space and produce the show. At one point a student staff member intervened when one sneaky spectator hopped behind the makeshift barricade of cafeteria tables to grab some soft serve for himself.
  • All of the students are incredibly supportive of each other: dancing, hugging, cheering, laughing, high-fiving and overall showing their appreciation for each others as artists and people.

I’ll conclude by sharing that the title of Saturday’s show, The Evolution of the Boy Band, and the content of the show, “6 decades worth of boy band music,”* was fitting and appropriate for the last Caf Show in the 150 caf. It’s obvious to all of us that Berklee College of Music is evolving: growing and changing more rapidly than any of the four institution’s I’ve previously called home. It’s been 26 great years in the 150 caf and I know we can count on at least that many, but much more, in 160. I’ll see you on January 14, 2014 at 10:00pm in the 160 caf for one of the many next steps in Berklee’s evolution: the first Caf Show in 160.

*Featuring:

Vocals:
JJ Asuming-Tawiah
Rob Ballantine
Matthew Sallee
Stewart Taylor
Nick Villalva

Instrumentals:
Jinho Choi
Diego Diaz
Arnetta Johnson
Jscott Martin
Alex Palazzo
Myrish Spell
Timothy Gabriel Smith
Jason Threm
Austin Wells
Michael Wooten

Choreography:
Jared Jenkins Sr.

Sound Design:
Jason Chambliss

Presented by Rob Ballantine, Professor Winston Maccow, and the Ensemble Department.

*From The Boy Band Ensemble: Last Free Show of the Year (Berklee Caf) on Facebook.

Astroland78.tumblr.com Lives On (a digest of content from the original universe)

This WordPress is another stage in the evolution of Astroland. After attending a blogger’s roundtable at the Massachusetts Conference for Women back in November 2013, I made the decision to grow Astroland into something more…

For fear of losing content (I’ve heard horror stories), I’m not going to import my Tumblr to WordPress. Rather I’m linking back to my last few Astroland78.tumblr.com posts in a digest style (below).

If you’d like to read entries prior to those listed below, please visit Astroland78.tumblr.com. Oh and one more thing. Know that I’ll continue to use my Tumblr to reblog posts from other cool Tumblr accounts I follow. So there will continue to be intriguing content there as well.

Happy New Year and welcome to the new Astroland!

December 16, 2013 * Love’s Pure Light

December 12, 2013 * A Few of My Favorite Things: #PuttingHackensackOnTheMap

December 6, 2013 * 10 Racial Justice Victories for 2013 (reblog)

November 23, 2013 * Astroland is Big Time Now

November 22, 2013 * Until That Time Comes

November 17, 2013 * The Dream Defenders: Please Share their Story Forward together with the youtube video where The Dream Defenders End Vigil at Florida Capitol 8/15/13 (after occupying for 31 days and 30 nights)

November 15, 2013 * My Day with Dr. Angela Y. Davis

November 13, 2013 * Choose Your Own Adventure (my first quiz)

November 4, 2013 * Miscellaneous Lessons in Fortitude from Pop Culture

October 14, 2013 * Go Go & Bounce Music on the MHP Show

October 13, 2013 * Beyond excited to see Dr. Angela Davis at the UVM Women’s Summit in November… 

October 13, 2013 * Dave and Grover on Sesame Street: “I need a word so I can say what I’m feeling today…”

August 31, 2013 * Talib Kweli: TURN DOWN FOR WHAT? TURN UP FOR THE DREAM DEFENDERS (reblog)

August 5, 2013 * The Cast of Orange is the New Black on the MHP Show

August 2, 2013 * #AmericanSkin #RememberTrayvon

August 1, 2013 * Next Stop: Fruitvale Station

April 23, 2013 * 4.15.13 What a Day.

Previous entries may be found at Astroland78.tumblr.com.