One Simple Conversation at a Time: #StopHIVTogether

This post is made possible by support from the Let’s Stop HIV Together campaign. All opinions are my own.

In the late 1980s, I explained how to use a condom to hundreds of men I didn’t know who had called the Florida AIDS Hotline as they tried to figure out what to do about the new challenge threatening their health. I had been volunteering and acting as an on-call supervisor at a local crisis hotline, and it was awarded the contract for the AIDS Hotline. I was not an ally yet; I was just doing a job.

Over on the west coast, Mark S. King was also volunteering for an AIDS-related project. When he chose to volunteer for AIDS Project Los Angeles (APLA) in 1986, he was doing more than “just a job.” Having been diagnosed as HIV positive in 1985, he needed to do something, and coordinating the APLA speaker’s bureau was his outlet. He thought he would be dead soon and craved immediate gratification.

As it turns out, Mark did not die in 1986 (thankfully). Although he lived in “three year increments” for quite some time after his initial diagnosis (hear more about that in this video with his friend, Lynne), he has now been living with HIV for 31 years and the virus is undetectable in his blood stream due to treatment (although the antibodies which result in an HIV+ test result will always be there).

HIV Prevention

Lynne and Mark

When I had an opportunity to interview Mark recently, I learned that many facts about living with HIV have changed. Specifically, the definition of “prevention” is much broader than it was back in the late 80s. For me in 1988, it meant telling strangers “don’t have sex” or “use a condom.” Mark says the most powerful preventative among his community at the time was: funerals.

In 2016, Prevention and Living with HIV Are Different

In addition to condoms, there are now more options for prevention:

  • PrEP (Pre-exposure Prophylaxis) – people at high risk for HIV can now take a medication that lowers their chances of getting infected. Learn more here.
  • PEP (Post-exposure Prophylaxis) – People who have been potentially exposed to HIV can take antiretroviral medicines (ART) after being potentially exposed to prevent becoming infected. Learn more here.

For people who have tested HIV+ but are on treatment, remaining on treatment in order to keep the virus undetectable is an option. Partners who go this route should know that:

  • · Everyone’s “undetectable” status is only as good as their most recent test.
  • · This choice clearly requires a level of trust between partners.

HIV Prevention

Simple Conversations Can Dispel Misinformation

Ironically, having not batted an eyelash throughout Mark’s book, which chronicles his experiences owning a phone sex hotline and frequent cocaine consumption in the 80s, I found myself hesitating to ask what he meant when he said several times, “I am able to have sex safely with my husband because I am on treatment.” Finally, I just admitted I needed to know more about what exactly he meant.

That’s when he clarified that an HIV+ person on successful treatment can’t transmit HIV. This has been the case for five years.

If I hadn’t asked or he hadn’t been willing to share, I would not have known. The solution to clearing up my confusion was a simple conversation.

“At Risk” Can Mean Anyone

To be perfectly honest, I am not sure if a single person I know and interact with here in Tallahassee is HIV positive.

Even though I don’t currently have someone in my circle who is HIV+, my circle has gotten a heck of a lot bigger since I have gotten involved in (some say addicted to!) social media.

Is there someone among my 2500 Facebook Friends, 9500 Twitter Followers, 3000 Instagram Followers, or 225 Snapchat Friends for whom I can make a difference?
I can’t be sure, but I know that doing nothing is not an option when:

  • Youth aged 13 to 24 accounted for more than 1 in 5 new HIV diagnoses in 2014.
  • Young gay and bisexual males accounted for 8 in 10 HIV diagnoses among youth in 2014.
  • At the end of 2012, 44% of youth ages 18 to 24 years living with HIV did not know they had HIV.
  • My peers are re-entering the dating world as decades-old marriages end and/or discovering that their partners were not monogamous and may have put them at risk.

Will someone identified in one of the above bullet points see something I post and feel less alone, more fortified to proceed with testing, more confident in engaging in a simple conversation?

Even if the people in the populations mentioned above don’t see one of my posts, maybe you will (and I know you’ve read this far, so you are equipped to help!). Stigma is eliminated one chat at a time, and I am asking you to help make a difference.

HIV Prevention

A Year Can Change Everything

I love the fact that this post is going live on June 26. Last year at this time, rainbows proliferated as same sex marriage was legitimized. However, the year has brought with it the flip side of the coin: those who spread hate.

I was so very excited to speak to Mark. We both sort of threw out the pre-written interview questions and just …. talked. The only moment of silence was when our conversation wandered to the tragedy that occurred at the Pulse Nightclub in Orlando. Mark told me how he, at 55, an award-winning activist in a happy marriage having overcome so many hurdles, was shaken to the core, immediately transported back to feeling like an unsafe sissy at risk of daily beatings. I stumbled for words, failing to respond adequately but empathizing at the same time.

What does that have to do with HIV?

It has to do with HIV because it’s hard enough for some people to come to terms with their own sexuality, much less the strategies they have to employ in order to protect themselves and others from HIV infection. Feelings of being unworthy can be the most difficult barriers to self care. As Mark says, the enemy is a virus, not our humanity.

What Can One Person Do?

If you still don’t understand HIV, ask.

You can get the facts.

If you are ready to help, click here for tons of resources.

You can get tested or help someone who needs to get tested figure out how.

You can get involved and share a story.

You can get materials to share.

And to learn more about Mark, visit his site, follow him on Twitter at @myfabdisease, like his Facebook page by clicking here, or buy his book here.

Lastly

My journey to being an ally was, in retrospect, pre-ordained. I am grateful every single day that I was put in that little room talking to all those strangers about condom usage. I heard their fears. I went myself for an HIV test (never mind the fact that the behaviors I thought put me at risk were, um, hardly risky). For the long version of my ally story, Not About Me, click here.

Yes, Mark is HIV+ but the part that came through to me was our commonalities. We laughed about the fact that we both have “old fashioned” AOL accounts. We shared some fun word play as we exchanged messages. We talked about how each of us goes about life trying to live with joy and humor.

I don’t know about you, but I’m all for more joy and humor, and a lot less stigma.

HIV Prevention

Migraine and Headache Awareness Month

Migraine Headache Awareness

I first became acquainted with Barbara Ross when my mother-in-law, Barb, was on the executive director selection committee for the agency that is now Lighthouse of the Big Bend. As the years elapsed, we became friends. I have always respected her many professional gifts; I love her loyalty, perceptiveness, and communicativeness as a friend.

Barbara has had many health challenges over the past several years, severe enough to leave her job. The process of finding a diagnosis has been daunting. Many mysteries remain, but one thing she does know is that migraines are a part of the complex of issues with which she is dealing.

When she posted “30 Things About My Life with Migraine” on her Facebook page, I asked if I could share this list with my blog readers. Although everyone’s experience is different, the list does an incredible job of a) explaining one person’s experience with migraine b) explaining to friends, family, and the general public what they can do to help someone who suffers from migraine, and c) acknowledging the people who have been her devoted supporters.

Thank you for sharing this migraine headache awareness post, Barbara, and for making one of the hardest things you’ve ever endured a vehicle to help others understand.

1. My diagnosis is: migraine without aura, chronic (i.e. daily)

2. My migraine attack frequency is: 6 – 7 times a week

3. I was diagnosed in: 2000-ish with migraines maybe twice a month

4. My comorbid conditions include: a) POTS / neurocardiogenic syncope / orthostatic hypotension (aka when I stand, my blood pressure falls and my heart races, resulting in fainting because of a screwy autonomic nervous system) b) reflux/GERD c) hypothyroidism

5. For prevention I’m trying Botox, plus one daily medication, plus one supplement (CoQ10.) I use 3 triptan medications to treat acute attacks although these only work 60% of the time.

6. My first migraine attack was: on a plane flying back from Ireland in 2000. In June 2015 my migraines worsened and by December 2015 they were daily.

7. My most disabling migraine symptoms are: severe nausea, vomiting, extreme pain in temples, painful sensitivity to noises, inability to think (brain fog)

8. My strangest migraine symptoms are: anything touching my skin hurts like rough sandpaper rubbing against me

9. My biggest migraine triggers are: bad weather and disrupted sleep

10. I know a migraine attack is coming on when: I have a sudden, extreme drop in energy.

11. The most frustrating part about having a migraine attack is: not being able to make my brain work – it interferes with everything I try to do on a practical level, but also my identity is tied to my intelligence & creativity which are often inaccessible.

12. During a migraine attack, I worry most about: being an imposition, letting others down, and not getting ill in public.

13. When I think about migraine between attacks, I think: I have to find something to prevent my being sick so often so I can resume my life – be a partner to Michelle, have fun with friends, dance, write, get a job to continue making a difference in the world, etc.

14. When I tell someone I have migraine, the response is usually: crickets in the awkward silence – most folks don’t seem to know what to say.

15. When someone tells me they have migraine, I think: ‘Oh NO!’

16. When I see commercials about migraine treatments, I think: I wish that worked for me…

17. My best coping tools are: Quiet (thank goodness for ear plugs), ice pack on head, lying down on something soft, cool air, sleeping.

18. I find comfort in: empathy from others, affection, understanding of loved ones, kindness

19. I get angry when people say: “You need to do better at getting a handle on this.”

20. I like it when people say: words of understanding & empathy or sympathy, even ‘you poor thing’ is better than silence.

21. Something kind someone can do for me during a migraine attack is: keep things quiet, cool, and bring me an ice pack.

22. The best thing(s) a doctor has ever said to me about migraine is: I know this is horrible for you.

23. The hardest thing to accept about having migraine is: it sucks there is no cure… I would do anything to end this.

24. Migraine has taught me: to take advantage of energy when I have it and be grateful when I’m not so ill I have to lie flat.

25. The quotation, motto, mantra, or scripture that gets me through an attack is: I know this will ease up eventually.

26. If I could go back to the early days of my diagnosis, I would tell myself: save more money!

27. The people who support me most are Michelle & Robin

28. The thing I most wish people understood about migraine is: there is very little you can do about it, it is not in your control.

29. Migraine and Headache Awareness Month is important to me because: maybe awareness will bring funding which will bring a cure.

30. One more thing I’d like to say about life with migraine is: Every time I have an actual good day, without a migraine, I hope that somehow I’m healed and can return to life… only to be crushed with disappointment.

Being so sick every single day is one of the hardest things I’ve ever endured.

To follow along on social media during Migraine and Headache Awareness Month, use the hashtags #‎MigraineAwarenessMonth‬ and #‎MHAM.

You can also find more information at Migraine.com. People with migraines and their families/friends/caregivers can request to join the Migraine Support Group on Facebook.

Migraine Headache Awareness

 

The Puppy Run: A Race Report

Yesterday morning (5/21/16), I ran The Puppy Run, a virtual run presented by FitFam which benefited Valhalla Canine Rescue.

Dog Rescue Virtual Run

Many people ran with their dogs, such as KR Endurance Coach Rebecca, who ran with her pup Teaka Bear:

Dog Rescue Virtual Run

Since I don’t have a dog, I tried to figure out how I could meaningfully participate. Since many of my friends either volunteer with organizations that help rescue dogs or have rescue dogs themselves (or both), I decided to use the opportunity to help tell the stories of some rescue dogs who need homes.

My friend Gabrielle connected me with Black Cats and Old Dogs, a rescue organization which prides itself on “rescuing what others refuse.” I used their website to filter for the most senior dogs. Since there were three, I dedicated each of the three miles to one of the senior dogs who needs a home! Here’s the way I modified the bib to feature them:

Dog Rescue Virtual Run

Mile One – Fannie

Dog Rescue Virtual Run

 

Fannie is a 9-year-old Yellow Lab mix who acts more like a 4-year-old! If you play ball with her, you will be her best friend for life. Fannie is good with other dogs and doesn’t have any concern about cats. She is house broken, spayed, current on vaccines, and heart worm negative. Learn more about her (and see a video!) here.

 

Mile Two – Maria

Maria is a 12-year-old Husky Shepherd mix. She loves to cuDog Rescue Virtual Runddle on the couch and she also loves all cats and dogs. Most of all, she loves relaxing in a quiet home.

 

Mile Three – Nicholas

Dog Rescue Virtual RunNicholas is a 7-year-old lab mix who will make the perfect family dog! He’s a sweet and gentle guy who just wants to be loved! Nicholas is neutered, current on vaccines, and has begun slow kill heart worm treatment.

 

 

The Race Itself

The actual running part of the race wasn’t all that remarkable. I’ve run the route around my neighborhood countless times before. My time was one of the worst times for that route (I am still experiencing some heart rate challenges so I’ve tried to stop obsessing about “bad” times). However, I did pass a neighbor run/walking with her new dog (twice), which seemed fitting given the dedication/purpose of my run.

The “medal” was a piece of paper designed to look like a medal:

Dog Rescue Virtual Run

(Note: There were actual medals (for humans AND dogs!) but I opted for the digital swag package!)

I also had the additional momentum of being part of a community who cares about dogs and wants to celebrate their role in the fitness world — as companions, motivators, and diversions (with their amusing antics).

Awesome pace or not, it was still PAWsitively fantastic (I had to fit one pun in!) to be part of The Puppy Run!

More on Fannie, Maria, and Nicholas

For more information about these three dogs and the other animals up for adoption from Black Cats and Old Dogs, please click here.

If you are here in Tallahassee, stop by P.A.W.S. tomorrow (5/22/16) between noon and 4 p.m. to meet some of the animals up for adoption!

Dog Rescue Virtual Run

 

Dog Rescue Virtual Run

World Immunization Week 2016

April 24, 2016 is the start of World Immunization Week 2016, a week when WHO and other global health advocates highlight recent gains in immunization coverage, and focus on further steps countries can take to “Close the Immunization Gap” and meet global vaccination targets by 2020.

On Saturday, April 30, 2016, I will be hosting a FUNdraiser at Nuberri on Blairstone Road here in Tallahassee. Nuberri is donating 25% of the pre-tax amount of the checks for any customers who mention Shot at Life!

Having participated in three Shot at Life Champion summits, a Social Good summit, and other immunization-related trainings, I am well aware that the process of getting a vaccine to a child in a developing country is not as simple as, say, pulling down on a pump and getting a delicious cup of frozen yogurt. Still, there are similarities:

Worldwide Immunization Advocacy

Immunizations: The need is clear. One child dies every 20 seconds from a vaccine-preventable disease.

Yogurt: Well, OKAY – this is a want not a need but … FROZEN YOGURT PEOPLE!

 

Worldwide Immunization Advocacy

Immunizations: Planning is paramount in order to have the right vaccinations, in the right amount, at the right time.

Yogurt: A business has to plan in advance for what people are going to choose and when they are going to choose it.

Worldwide Immunization Advocacy

Immunizations: The process of manufacturing vaccines for developing countries involves a dizzying array of details.

Yogurt: That deliciousness doesn’t happen magically. Someone has to mix up the components of the tasty treaWorldwide Immunization Advocacyts!

Immunizations: Many vaccines must be stored at cool temperatures in order to remain viable. This is not simple.

Yogurt: It’s called FROZEN yogurt for a reason! You have to chill it to keep it refreshing!

Worldwide Immunization AdvocacyImmunizations: Finally! With immunizations, children are more likely to make it to their 5th birthdays!

Yogurt: Nom nom. All that work pays off as we share sweet desserts and sweet time with friends!

More About April 30

I think we would all agree it’s easier to get a cup full of delicious frozen yogurt than it is to get a rotavirus vaccine to a child in Pakistan, but with the April 30 Share Day you can do both, thanks to the generosity of Nuberri Blairstone Road. They are donating 25% of the proceeds from that day for anyone who mentions Shot at Life to help children around the world have access to immunizations! How cool is that?!

Details:

Date: Saturday, April 30, 2016, 11:30 a.m. to 11 p.m.

Location: Nuberri, 101 North Blairstone Road (in the Governor’s Crossing shopping center)

To Help Shot at Life: Mention Shot at Life at checkout. You will be asked to sign your receipt.

If you want to participate but can’t make it: You’ll be missed! Please feel free to donate by clicking here.

Giveaway!

I’m giving a $10 giftcard to Nuberri to one of my readers. Use it at the Share Day or use it whenever!

a Rafflecopter giveaway

Note: For winners who do not have access to Nuberri, I will donate $10 to Shot at Life in your name instead.

I have the good fortune to live in a place where it is as simple for me to ensure my children have necessary immunizations as it is to indulge in a delicious frozen yogurt treat. Millions of mothers worldwide are not so fortunate.

That’s why, this World Immunization Week (and year-round), I am using my voice to make Need * Plan * Make * Chill * Serve apply to more than yogurt. It’s also about giving children around the world a Shot at Life!

Worldwide Immunization Advoacy

Worldwide Immunization Advocacy

Making a Difference Among Friends

Phew! I returned from the 5th Annual Shot at Life Champion Summit (this was my 3rd), with plans for a blog post overflowing with reflections, facts, and experiences.

BUT, it didn’t take long before it became apparent that maybe I should have spent about half an hour at some point in the prior months and gotten the flu shot I’ve been encouraging everyone else to get as part of the Give a Shot Get a Shot program.

Immunization Advocacy

At a Walgreens in Washington DC, checking out a Give a Shot Get a Shot display.

That’s why tonight’s post from the sick bed contains a few anecdotes and pictures, with the promise of a “bigger” post later!

I am so grateful that this summit gave me the opportunity to finally meet (and interview in front of the summit audience) Minda Dentler. She is a triathlete, polio survivor, and mom. I first learned about her when Charity Miles encouraged participants to vote for her when she was nominated for an ESPY. She may not have won the ESPY but she won my gratitude and admiration in the biggest of ways!

Immunization Advocacy

Even for a cause I love so dearly, such as making sure children worldwide have a chance at living to their 5th birthdays and not succumbing to vaccine-preventable diseases, I still find it difficult to speak up sometimes.

When I spotted Debbie Wasserman-Schultz conducting a press interview as we waited for our meeting with Rep. Alan Grayson, I faced a choice: leap in front of her path and give my elevator speech or leave it at telling my fellow champions “yeah, I remember her from her time in Florida, when Wayne (my husband) was a staff person in the legislature.”

I leapt. I gave the elevator speech. Her staff member now holds a packet full of Shot at Life material. Every leap holds the potential to make a difference.

Immunization Advocacy

My view as I tried to decide whether to leap or not.

Did you know food is not allowed in the US Capitol complex? EVEN if the food is Girl Scout Cookies you’ve been carrying around ALL DAY LONG to enjoy at the end of hours upon hours of advocacy. Although we dodged the cookie confiscation bullet one time when we entered the US Capitol complex, we weren’t so lucky at the end of the day when we entered the Capitol complex for a reception honoring Rep. Jim McDermott.

Security was having none of it.

I won’t go into our technique, but suffice it to say although we were instructed to put the cookies in the dumpster (really, is it even AMERICAN to put unopened boxes of Girl Scout cookies in a dumpster?), we, um, “found another home for them” and the cookie party later that evening was worth the hassle!

Let me tell you, these advocates are as creative and dogged about protecting children worldwide as they are about safeguarding Girl Scout cookies. The children of the world are in the best (and most fun, for what it’s worth!) hands!

Immunization Advocacy

And lastly, a travel lesson learned:

I had a companion on my Super Shuttle on the way from BWI to Washington, DC, who gave me a piece of advice about the return trip to BWI. She suggested that Uber would be more comfortable and roughly the same price as a Super Shuttle. That sounded good to me, so I didn’t make a return reservation.

I’m a bit of a freak about punctuality when traveling, so I ordered the Uber in plenty of time to make BWI prior to my flight. Imagine my surprise when Uber notified me that it was “surge pricing” time and it would cost a lot more to get to BWI than it would at non-surge pricing time. I called Super Shuttle, which said it was too late to hop on one of those. I was just on the verge of accepting the surge pricing (sigh….) when I got a notification from Uber that regular pricing was back in effect and I should request as quickly as possible. I did and all was good, but notes were taken for the future. Backup plans are good.

Cookies, Leaping, and Inspiration aside … why do we do this? Take the 1:38, less than two minutes, to watch this video and I’m pretty sure it will be clear.

Jumping for Joy!

I have so many ideas for posts, but the more pressing issue is the 5:30 am flight I have tomorrow morning for the annual Shot at Life Champions summit!

While at the summit, I will be the advocate behind the @Vaccines Twitter account. Keep me busy — send me questions and encouragement!

I also hope to catch the first commercial-free showing of He Named Me Malala tomorrow night on the National Geographic Channel at 8 ET/7 CT! (Read more in my blog, The Magic of Malala, from a few weeks ago!).

For now, a simple thank you to the four women who shared this past weekend with me as they ran the Seaside Half Marathon and I ran the Seaside 5K. The good company, the beautiful place, and the energy of being surrounded by so many runners simply made me (and them!) JUMP FOR JOY!

Jumping for Joy

I hope something during your week makes you jump for joy! 

Autism Cooks: More Than Cookies

When I walked into Autism Cooks Thursday night, the first person I spoke with was Joy Moore from the Center for Autism and Related Disabilities. Any time I speak with someone from CARD, and any time I go to an autism-related event at all, my mind flashes back to me, sitting in an observation room, watching my 13-month-old be assessed for signs of autism. I picture the staff person pointing to an object on the wall, trying loudly and animatedly to get his attention as he just looks at her, utterly nonresponsive to her efforts. (Responsiveness to cues is one indicator researchers look for in children who can’t speak yet to assess their receptive language skills.)

There would be other moments just like that over the year when he participated in the First Words project. More videotaped assessments (I’m sure the video still exists somewhere!), a therapeutic playgroup, months when my mind was preoccupied by the “what ifs” regarding whether or not my son was on the autism spectrum.

By his second birthday, the conclusion was that he was not on the spectrum, and that developmentally he was age-appropriate and a “slow talker” (which is hilarious in the light of his verbosity now). He stayed involved in CARD through his fifth birthday, participating in annual assessments for a longitudinal study they were conducting. I am sure that helped them research-wise but it also helped me as a parent have a sense of how he was doing developmentally.

All of that – the research, the early exposure for me as a parent to the signs of autism, the compassion and professionalism shown to me by the staff members at CARD – contributed to the fact that I am a passionate supporter of autism-related causes. I know that a growing issue, as autism becomes more prevalent, is how adults with autism will have a way to make a living, to have shelter and food, and to be supported by their communities.

That is why the Autism Cooks event Thursday night, and the potential for Autism Cooks to become a full-time location where people can come together with friends who have autism as well as friends who don’t and feel at ease while learning life skills, captured my heart and my imagination. There’s no reason our community can’t be a place where that happens.

At Autism Cooks, Kevin Graham and Kiersten Lee, of Paisley Cafe, along with Chef Arturo, demonstrated how to bake sugar cookies, distributed delicious fresh cookies and milk, and sent everyone home with take-home bags! In addition, the Center for Autism and Related Disabilities was present to distribute information, promote its upcoming 5K, and accept voluntary donations.

Here are some pictures of the event:

Autism Cooking Project

Kiersten explains the baking process.

Autism Cooking Project

A rapt audience watches Kevin, Chef Arturo, and Kiersten prepare the dough.

Autism Cooking Project

The finished product!

I’m most excited to hand everyone their cookies. I know they will like them. – Kevin Graham

Autism Cooking Project

Kiersten reads the Autism Cooks brochure – the first time Kevin has seen it!

He came into my life at just the right moment. I could tell he needed some Kiki, but what he didn’t know is that I needed a friend like him more. He’s the best present Paisley’s given me. – Kiersten Lee

Autism Cooking Project

Who needs Gordon Ramsay (no offense, Gordon); I’ve met Kevin Graham!

A few comments from the Autism Cooks Brochure:

Autism cooks is an original Tallahassee project spearheaded by restauranteur and entrepreneur Kiersten Lee and her forever friend, Kevin Graham.

The pair met the way Kiersten meets a lot of people — at Paisley Cafe over a bowl of grits. Kevin, a Lively Tech. culinary student, was an employee of then neighbor Lucy & Leo’s Cupcakery. He’d spend the early morning hours before his shift quietly hanging out at Paisley.

“You should have seen his smile when I handed him that bowl of grits,” laughed Kiersten. “He looked up at me and said, ‘Thank you, Kiki.’ He had known my name all along.”

The future of Autism Cooks is an evolving concept. The dream (to reiterate from above): A full-time location where people with autism can come together with friends like Kevin and Kiersten and feel at ease while learning life skills.

For more information:

About Paisley Cafe: Website, Facebook, Twitter

About the Center for Autism and Related Disorders (CARD): Website

About CARD’s April 9 Superhero 5K and 1 Mile Fun Run (hint please sign up!!!!!): Details

Autism Cooking Project

 

The Magic of Malala

Did you see Malala Yousafzai on Colbert? Take the 3:06; I’ll wait!

In this brief clip, Malala and Colbert share laughs over card tricks. I remember watching this interview last September and thinking, “if I didn’t know she had changed the world in a breathtakingly courageous and daring way, I would almost think she’s pretty much any other young adult chatting it up with a comedian.”

The thing is: Malala is not just “any other young adult.” She is the world’s youngest Nobel Peace Prize winner. As explained via her website:

On 9 October 2012, as Malala and her friends were travelling home from school, a masked gunman entered their school bus and asked for Malala by name. She was shot with a single bullet which went through her head, neck and shoulder. Two of her friends were also injured in the attack.

Malala survived the initial attack, but was in a critical condition. She was moved to Birmingham in the United Kingdom for treatment at a hospital that specialises in military injuries. She was not discharged until January, 2013 by which time she had been joined by her family in the UK.

The Taliban’s attempt to kill Malala received worldwide condemnation and led to protests across Pakistan. In the weeks after the attack, over 2 million people signed a right to education petition, and the National Assembly swiftly ratified Pakistan’s first Right To Free and Compulsory Education Bill.

This February 29, 2016, we all have an opportunity to learn more about Malala and celebrate her contributions when He Named Me Malala, Davis Guggenheim’s acclaimed film, has its commercial-free television premiere on the National Geographic channel at 8:00 pm ET/7:00 pm CT.

Here’s the trailer for the film:

If you are on Twitter, you can help spread the word with the following tweets!

#HeNamedMeMalala premieres commercial free on @natgeochannel 2/29 @ 8/7c! Stand #withMalala + watch with your family on.natgeo.com/1VbVWaJ 

#HeNamedMeMalala premiers on @natgeochannel 2/29 at 8/7c. See it and stand #withMalala! on.natgeo.com/1VbVWaJ

Mark your calendar to stand #withMalala for girls’ ed. #HeNamedMeMalala premiering on @natgeochannel on.natgeo.com/1VbVWaJ

Having a daughter who is close in age to Malala, I marvel at the opportunities my daughter has had to learn, work, and grow free of oppression. It is unthinkable that any young woman in our world has to risk death in order to get the education all children deserve, and I commend Malala for her courage, her passion, and her articulate and motivational ways.

Educating Girls

Her card tricks aren’t bad either!

Educating Girls

For more information:

About the commercial-free showing of He Named Me Malala on the National Geographic Channel, click here.

Follow The Malala Fund on Facebook by clicking here.

Follow The Malala Fund on Twitter by clicking here.

Take action to stand #WithMalala by clicking here.

Donate to The Malala Fund by clicking here.

Educating Girls

Help “The Husband” Fight Mold Poisoning

I’m not sure if he remembers this interaction, but the first time I met Sasan, I was meeting up with Christina at Jaleo in DC. It was our first IRL meeting after a long Twitter friendship. All those times I say, “I’ve never intentionally met up with someone from Twitter and walked away disappointed,” I most definitely mean this friendship and meeting. Anyway, he had family in town so he briefly introduced himself then left while Christina and I commenced with sangria consumption. A bit later, my Faceblindness reared its clueless head when he walked up and I gave him a blank look. He said, “I’m the husband.” LOL I think about that little phrase all the time! We had an opportunity to spend a little time together when I was in DC last September (Faceblindness-free hooray!).

christina

To get to the point, Sasan is dealing with a chronic illness brought on by mold poisoning. Mold poisoning is a poorly understood condition and the extent to which this devoted couple has had to upend their lives in order to try to improve his health is daunting. It’s most accurate to hear Christina’s version. Here’s an excerpt:

There’s a lot about mold exposure and environmental illness that seemingly makes no sense. There are a lot of unknowns and even more “unseens” that make it a mystery, not only to the doctors and providers who are treating it, but to the person who is suffering from it. I have learned a lot about all the things you can’t see simply by listening to and learning from my superhero husband.

What you can’t see is the constant pain he is in. He looks like the picture of health, but inside he’s hurting. He can’t buy warm clothes because many fabrics are also contaminated. So much of what is in stores has been imported, often by boat (a prime breeding ground for mold), and the fabrics irritate him. He can’t find a warm coat right now — so we are not looking forward to the colder days that are invevitably coming. While he is smiling on the outside, my warrior husband is suffering on the inside. But he’ll never let you see it.

What you can’t see is contaminated environments. Despite being a new building, recently cleaned, or looking nice, some things aren’t what they seem. There have been countless times that we’ve walked into a restaurant, store, or other building only to learn seconds later (because that’s how long it takes to react) that something just isn’t right. New buildings (or recently renovated ones) frequently have residual construction dust that can exacerbate his symptoms. We often play “Goldilocks” in a restaurant to find a seat that’s just right (not too near the outdoors, or near dusty plants, or near exposed brick, or, or, or…).This level of sensitivity to contamination is what has prevented him from finding a place to live, and why he’s living in a hotel room. It’s an invisible prison.

What you can’t see is the incredible strength. For more than four years, this has been our reality. And for four years, my husband has kept hurting, kept going, kept fighting. Every day is like a chess match, anticipating what new challenge this disease is going to throw at us, what move we will have to make next to think ahead. And despite every setback, every devastating pivot, my husband has been nothing short of amazing. Check and mate, we will beat this thing because of his incredible strength.1981757_875049037655_1288837403_n

I value Christina’s friendship and the fact she’s one of the few people in the world I can send a crazy “WTH?” or “I’m so exhausted” DM to and get the requisite amount of empathy. She was also the silent co-author of the 12 Most Supercilious Corpspeak Terms. 

Here are the ways you can help:

If you are in the DC area, attend the Fight Mold Poisoning Fund Raiser and Silent Auction on December 8 from 5-8 p.m. at Sprig and Sprout. Your $20 donation at the door will go toward the cause. (RSVP even if you’re not attending so you can access the silent auction goodies!).

The silent auction closes at noon on 12/8 and includes:

**a crabcake dinner for 4 OR handmade chocolates and wine, courtesy of Three Courses
**gift certificate to Bubbles Salons
**makeup consulting via The Glossy Goddess
**hand crocheted wool winter set via Angie Dejesus-Webb
**beautiful baked goods from Libellule Baking Company
**private yoga for up to 4 people with yogawithdena
**beautiful Lola James lariat necklace
**vegetarian dinner for two with WINE
**incredible original comic book art

Chocolates and Wine Silent Auction Item

Chocolates and Wine Silent Auction Item

Lola James Lariat Necklace

Lola James Lariat Necklace Silent Auction Item

Can’t attend, but want to bid? Email empartoyan@gmail.com with your bid by NOON on 12/8.

Click here for more details regarding the fundraiser event.

Sign up for their YouCaring site for updates and to donate, if you’re so inclined.

Even if you can’t go to the fundraiser, bid on a silent auction item, or donate, there are still two things you can do.

  1. Educate yourself about Mold Poisoning and other silent chronic illnesses so you can be one of those people who dispels myths instead of perpetuating them
  2. Share a word of support for Christina and Sasan. Prayers/good intentions are good too. If you make a comment here on my blog, I’ll make sure they see it!

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Bashira: Surviving Fistula in Tanzania

When I had an opportunity to write about women who made an impact on the Global Goal of Health (Number 3 of the 17!), one of the organizations I learned about during my research was CCBRT (Comprehensive Community Based Rehabilitation in Tanzania). CCBRT, a locally registered NGO, is the largest indigenous provider of disability services in Tanzania. CCBRT empowers people with disabilities and their families, improves their quality of life, and ensures access to medical and rehabilitative treatment. CCBRT is also a leading partner of the Government of Tanzania in the fight to improve the quality of maternal and newborn healthcare in the country. This #GivingTuesday, I am sharing their story.

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The CCBRT Facility

The best way to learn about CCBRT is to get acquainted with someone for whom CCBRT has been a life changer. Bashira (whose name has been changed to ensure her privacy) is one of those “someones.”

Bashira was 17-years-old and working as a field laborer in Tanzania when she became pregnant. In the months leading up to her delivery, she did everything she was supposed to, attending antenatal appointments and preparing for the birth of her child.

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When the labor pains began, Bashira’s grandmother called a Traditional Birth Attendant to assist her granddaughter through the delivery, but there was a complication. After two days of labor, Bashira went to the hospital where medical teams rushed to perform an emergency C-section. They were too late. Her newborn son only lived for one hour.

Two days after she lost her baby, Bashira started leaking urine. Her doctors diagnosed the leaking as a birth injury, obstetric fistula; a condition Bashira had never heard of, and couldn’t afford to have corrected.

“I felt depressed; I felt like my heart was heavy,” she says, now 21-years-old.

Three years passed, and the chronic incontinence forced Bashira into isolation. Her parents remained supportive, but her friends, other relatives, and community abandoned her.

“I couldn’t go to work,” she remembers. “I couldn’t go to church, I couldn’t talk to my friends; they ignored me.”

Bashira was isolated from the friends she desperately needed: except for one. This year, one of her friends saw an advertisement on the side of a bus for CCBRT, one of the leading providers of fistula treatment in Tanzania. Every year CCBRT changes the lives of over 1 million people by providing healthcare services, training local medical teams, strengthening the existing infrastructure, and piloting advocacy and health education programs in Tanzanian communities.

After calling CCBRT, Bashira’s bus ticket was paid for by one of CCBRT’s Fistula Ambassadors, as part of their innovative TransportMyPatient Program. A few days later, Bashira arrived safely at the hospital in Dar es Salaam for surgery. She also received physiotherapy, health education, and counseling to address the emotional and psychological trauma she had suffered as a result of her condition. Every stage of Bashira’s treatment and rehabilitation was provided free of charge. She now wants to study to become a doctor or lawyer when she returns home. Thanks to a life changing procedure, Bashira has the confidence to aim high, and look towards a brighter future.

There are thousands like Bashira who need our help.

Tanzania has one of the highest rates of maternal mortality and morbidity in the world. Estimates suggest that one woman will die every hour from birth-related complications. For every woman that dies, 20 more women will develop an infection or debilitating impairment. By improving the quality of care available to expectant mothers and their newborns we can prevent the tragic loss of life and years of silent suffering. The cost of the surgery that restored Bashira’s future was $750. The cost to have a trained team assist with her delivery would have been $215. An investment in prevention makes sense.

How can you help?

Kupona Foundation is the US-based sister organization of CCBRT, mobilizing resources and activating awareness to enable the continuation of CCBRT’s life changing programs. Kupona Foundation gives individuals and institutions in the United States the opportunity to foster direct, local impact, empowering people like Bashira to realize their full potential by improving their access to quality healthcare. From 2009 to 2014, Kupona mobilized nearly $1.5 million for CCBRT.

As of December 1st, Kupona is participating in a competition through the GlobalGiving.org page, with up to $3,000 of bonus funds available. Their goal this month is to raise $10,000 to support CCBRT, and provide safe deliveries for over 45 mothers in Tanzania.

As they kick off the holiday season, they ask that you stand with them to provide the mothers and newborns of Tanzania with the healthcare they need and deserve. The beginning of Bashira’s story has been the status quo for too long; your support can change that.

Kupona Foundation is a 501(c)(3) registered non-profit. Donations to Kupona Foundation are tax-deductible to the extent allowed by law. Please visit www.kuponafoundation.org to learn more about our work, and check out our social media pages on Twitter and Facebook. You can contact us directly for more information at info@kuponafoundation.org.

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