This blog highlights the HIV advocacy work and personal experience of living with HIV that I go through every day.
…died not because her treatment failed, but because the very systems meant to sustain her life decided she was too expensive and risky to keep alive. She lived and thrived with HIV, and because of ADAP, lived well, until coverage gaps, formulary exclusions, state violence, and bureaucratic indifference replaced medicine with uncertainty, confusion, and anger.
Read MoreI was diagnosed in 2003. I was unaware of the countless others diagnosed prior to me, those that didn’t have the chance to fight to be here today. My heart mourns them even when I celebrate the victories of U=U, HIV Criminalization laws being overturned or new treatments that prolong life are developed. I fight on with their lives as my platform so that their living won’t be in vain. This blog entry is dedicated to all of us still here, still fighting, still surviving, surviving still. (I love you Jesús).
June 5, 2019
Dear Champion,
Dear Bad-Ass,
Dear Hellraiser,
Dear Advocate,
Dear Survivor…
DEAR YOU,
However you describe and define yourself, you are here.
You have overcome a life-transitioning diagnosis. You have faced stigma and stared it down to the nothingness that it’s supposed to be. You have championed the times of medical adherence challenges. You survived Reagan and AZT. You will survive Trump and the elections of 2020. You have kept your eyes open in spite of the blinders society wears to very existence you behold. You have risen above, stood on top, pushed through and carried on.
And even for those moments or days where you didn’t show up as your best or felt that you couldn’t. You did.
The day you received your diagnosis. The first time you confided your status to a loved one. And the second time, and the third and so on. The day you started your treatment and didn’t know how you were going to make it like this for the rest of your life. The day you woke up and taking your meds was a little less bothersome. The day you reached undetectable. The day you realized you are more than your diagnosis. The day you accepted that your dreams were not infected. The day you looked at your reflection and didn’t cry.
There are shoulders of greatness that you stand upon; there are shadows of stigma you’ve emerged from. There are avenues of innovation and boulevards of dreams. There is a journey to be traveled and you my beloved friend are here to pave the way.
Your history is embedded in hope. Your legacy is empowered by living your truths. Your victories are anchored by simply showing up and living day by day. Your viral load doesn’t define you. This diagnosis doesn’t delay you. But this day, dear long term survivor - celebrates you. Thank you for being here. Thank you for not just surviving, but thriving.
Sincerely,
IMAGE: Woman smiling with words in a frame around her face Long Term Treatment Works, Kamaria Laffrey 16 Year Survivor, HIV Survivor
Graphic Design Credit - Zee Strong of the Digital Living Quilt
“Life isn’t meant to be perfect. It’s meant to be lived.”
In the early summer, I had the opportunity to lend my voice as a spokesperson to a campaign that has changed my life, recentered me in my “Why…” and been something I’ve been incredibly humbled by but so proud of.
The Positively Fearless social media campaign, sponsored by the Janssen Pharmaceuticals of Johnson & Johnson is a patient advocacy campaign focused on promoting what redefining what it means to live with HIV and looking towards the future with purpose and promise. So much is possible when you’re living Positively Fearless and I had the opportunity to uniquely define what that means to me, along with fellow advocates Jahlove Serrano, Daniel Garza, Guy Anthony, and Robert Breining. Together, the five of us speak not just about our diagnosis, but overcoming challenges and mindsets to live free from stigma, take control of our treatment, practice self-care and putting ourselves first to live our best lives.
I said earlier that this campaign has recentered me and it’s a process so I won’t go into all of it here, but I will share that the timely reminder that I can take charge of my health, keep my viral load suppressed and navigate challenges in the whirlwind of the advocacy work that is piled up on my plate — was a helpful and sanity-saving reminder. So much so, that before the campaign’s video series even launched, I had gone to the website www.positivelyfearless.com and downloaded their self-care materials to use for a workshop on self-care with PositivelyU. I don’t believe in coincidences, and the opportunity to work with the clients, better known as STARS of PositivelyU on empowering them to have the difficult conversations with providers, prioritizing time for self or simply being in tune to their environment was a dual-learning experience I will forever be grateful for.
Take a moment to visit the website and check out the materials, swipe through the Instagram account and be a part of the conversation. Declare “I am Fearless” and share how — whether you are living with HIV or not.
Remember... “Life isn’t meant to be perfect, it’s meant to be lived.”
How are YOU living Positively Fearless?
Have a powerful and productively blessed day,
I made this post on Facebook in a moment of amusement, but have not been able to stop thinking about it since. Today marks the day my whole world changed.
I was diagnosed on August 6, 2003.
Realizing this has been fifteen years almost makes me feel like this is a new diagnosis. I have also just started my menstrual cycle, so it could just be hormones mixing with reality.
Part of me feels like I should be celebrating. Another part of me feels absolutely depressed because I have lost too many mentors and friends in just those fifteen years. Yet, another part of me reflects on all the amazing people I’ve gained in my life and how empty it would be if I had never met them. Then, in the next moment, I remember I have to take my treatment and this spiral pulls me to The Upside Down all over again. The stigma, the loss, the health challenges, the fights for justice, the energy exerted to be whole, the energy just to smile through another day.
An HIV diagnosis robs so much from you - but dammit, it gives you so much more. Like, you can Google me (maiden name and married name) and I’m like doing stuff. I am building a legacy in spite of my diagnosis. I am living life out loud to show people how amazing HIV can look. I am embracing my healing so others can be whole, I am giving inspiration so others can see hope and I am living victoriously so others will know how they can still find themselves beyond their diagnosis.
I hold on to the beautiful things, but I have to be honest. In this moment that I hit send and go on with my day, the frayed edges of my red ribbon...make me sad. I just want to be the last one. No more diagnosis. No more stigma. No more.
My 1st business card, made by my dad. #TheFaceToEraseStigma 2009
To believe or not to believe your own press, that is the question.
My grandmother always told me to never believe what people say about me, whether good or bad unless it was going to make me a better person. She taught her children and grandchildren to remain humble. It is why I had to teach myself to just say "Thank you" when being paid a compliment, and to throw off those imposing their unwarranted opinion on me.
So when I'm recognized for doing good job, inside I'm appreciative and super relieved that I'm doing something right. Outside, I begin to stutter and justify why I haven't been perfect. I'm working on maintaining a balance of just owning who I am. Perhaps that's why texts like these come into my life unexpectedly!
A swipe or two later and it was confirmed! Healthline commemorates World AIDS Day by honoring and recognizing various advocates, organizations, and initiatives from the entire year that have inspired, influenced and informed through their innovative and tireless work. Looking through the list and seeing so many colleagues and friends, I was shocked. I was named at an #HIVHonor for Best Advocat for Female HIV Health.
To be on a list with anything U equals U related, is an honor. Being recognized the same year that the CDC publicly agreed that anyone liivng with HIV who has an undetectable load cannot transmit the virus. Which of course made the Person of the Year, Bruce Richman. In case you don't know, he is the energizer bunny behind the monumental CDC agreement as well as his initiative with the Prevention Access Campaign that has fueled and empowered thousands of People Living with HIV around the world.
There are many others on the list, including @RiseUpToHIV creator, Kevin Maloney! And the gorgeous Maria Mejia, Dr. Carrie Foote...a really inspiring list! Please visit their website to see the other honors!
Thank you again Healthline #HIVHonors, and Josh Robbins for letting me commemorate my World AIDS Day not just shedding tears for those lost but to know that the work they've inspired me to do is not in vain.
@imstilljosh thank you again!
By now, the world is paying attention (or might be tuning out) to the catastrophic events that have taken place in the wake of Hurricane Harvey. The flooding, the crisis and overall panic of the cities of Houston (appr. 2.4 million), Corpus Christi (appr. 326K), as well as surrounding areas has left many people displaced, discouraged and disconnected from their health resources that help keep them alive.
Before I address the amazing health advocates on the ground in and outside of Texas mobilizing to provide emergency resources and extended rebuilding supplies, I want discuss something that people seem to be griping about on social media. As a native Floridian, I've lived through sev-er-al hurricanes, freakish lightening storms and tornadoes, so this is coming from that perspective.
I have seen variations of this "concern":
Why didn't the mayors of those towns evacuate those poor people?
Ma'am/Sir...have you been stuck in traffic on any interstate before on a regular day? All appr. 2.4 million residents aren't ever on the highway at the same time and traffic is still hectic, first of all. Now, imagine ALL the residents trying to leave...but add in rising waters on the interstate (where fatalities would have been higher), subtract those that don't have their own transportation and are in their homes as the water rises, and if you DO happen to evacuate but have pets, I hope you're staying in a hotel (which requires some sort of funds because not all hotels were shelters). Most emergency shelters don't allow pets because of allergies and capacity, so where are you going to put your dog and cat? In weather like this, you cannot predict what will happen, what will go wrong or how long it will last - even in well, prepared states like Florida, there is always something unforseen that happens. And eventhough the actual hurricane is over, the rain hasn't stopped in all areas. The water may have receded in some places, but there are many neighborhoods and communities that are never going to be the same because of water damage.
The other concern has been where to send money, resources and/or how to get items directly to people that need help. Well, I have great news! There are several health advocates that have orcehstrated health supply drives and created a Facebook group tp house all the information that will help. This group, named "Hurricane Harvey 2017 - People Who Need Medical Supplies/Devices serves as a non-emergency service that is taking donations & mobilizing volunteers to fill untapped needs for patients with chronic conditions who may need things like ostomy supplies, salt packets, Sharp's biohazard boxes, ziplock for meds, benadryl, etc. etc. etc. This is not an emergency service. They will be collecting items for a while as people continue to battle through the process of rebuilding their homes, pharmacies and schools. There is an Amazon List set up that will be constantly changing. Volunteers are ready to receive packaged items as well and there are other groups for rescue and recovery linked within the posts on the Facebook page. If you need emergency medical assistance please reach out to those groups who have a direct line to emergency services.
I find this method to be a perfect solution to those that are uncomfortable with texting to non-profits, but I also challenge you to look into your communities civic groups. Most long-established groups have international or national boards that are charged to respond to natural disasters like this. For example, Kiwanis have several of their clubs gathering supplies and responding. Most states have local affiliated clubs that you can contribute to. Rotary clubs around the nation are partnering with ShelterBox to provide hundreds of light privacy tents to families that are displaced temporarily. Lastly, one of my favorite organizations, Habitat for Humanity is mobilizing in many other states to provide resources and assistance in the rebuilding of communities throughout the impacted areas of Texas. As things slow down work-wise for me around the holidays, I plan to reach out to one of these organizations or partners and find something I can do that's hands on to help elevate the spirits of those that need it.
I know from my experience in 2004 with Hurricane Charley, plus the three others that hit my community in one summer, back-to-back. We lost power for a week. My daughter was one, I lived with my elderly grandmother and disabled veteran mom. It was hot, scary and frustrating but we were blessed. We lived on high land and didn't experience much flooding but with gas stations running out of fuel, people couldn't run back-up generators, food spoiled and the list of difficulties went on and on. It's not something I ever want to go through again and don't want anyone to experience either. I believe we live through things to be the help others are looking for. I'm ready to roll up my sleeves. Are you?
So, I'm finally back from #HealtheVoices17 and after a full day of rest, I am still at a lost for words on how to summarize or describe my experience there. There were tears, inside jokes, tons of laughs, and a lot that I learned that will enhance the impact I have in my social media advocacy.
One thing is for certain in the goal I set for my attendance at HealtheVoices this year. I did not want to be the same person leaving that I was coming in. Coming in, I was stressed from family issues, burned out from advocacy/policy work, and feeling overall depleted so I was running on autopilot. The first day activities with the #PurposefulConnections HIV Summit knocked all of that out the gate as soon as Rhonda Waters of Johnson & Johnson's HPI (Human Performance Institute) had us re-evaluate our values and get to the core of why we do advocacy in the first place. So, walking out of the conference on our last day Sunday, I was definitely felt back to a empowered place of authenticity. I felt more rooted in my passion.
I just want to share with you five things I have immediately implemented or an in the process of adding to my advocacy toolkit.
1. Add a medical disclaimer to your posts or website. I spoke with Benjamin Di'Costa, a fellow HIV advocate and among many other wise social media tips he gave, I realized this one was such a simple one and I had overlooked it. It protects advocates, while we are patient experts, we are not always medical professionals and are only speaking from our lived and learned experiences. There are a lot of examples throughout the internet that can be tailored to fit the needs of any advocate. I have now placed this disclaimer throughout my website because what I may advise may not always be what I know for each individual person that reads my content. I want us both to benefit from this relationship and for no harm to come to either of us.
2. Making videos is easier than one thinks. When I attended a session on creating impactful video for advocacy last year, Josh Robbins had amazing tips on scripting, lighting, audio and apps to use that were super inexpensive. Cameras intimidate me eventhough I know that using video is effective, so I didn't fully implement his tips or take them seriously for my work at the time. This year, he gave great tips on the same issues, but hearing it again as well as other attendees experience using what works for them, I have now found that I can afford and accomplish bite size videos that will help me in HIV advocacy. Lilly Stairs even posted in our HealtheVoices Facebook page, this great app in iOS called Clips that does closed captioning so followers that are hearing impaired can access content. It's FREE! It's EASY! It's FUN! I'm starting out with that one and hope it takes me to another level.
3. Legislative advocacy is critical. In a session by Type 1 diabetes health advocate Christel Aprigliano and Public Affairs Council expert member Nick DeSarno, a wealth of information was shared on how to effectively speak with your congress members, their staff and if they refuse to host public forums, there are effective ways to "out" them that will help bring the importance of your cause to light. One thing I think is effective is to attend their campaign events, town forums or party specific fundraisers and ask for a photo opportunity with them. Be sure to wear a shirt that speaks to your cause in a bold statement, then post said photo to social media with whatever policy oriented hashtags or messaging is best suited for the position you want them to consider for your cause. I'd even go the extra mile and send them a copy of the photo as a thank you card. Being reslilent in policy work is the key. Decisions in legislation are not made overnight, building relationships is key - and never, ever give up.
4. Protecting your followers is just as important as protecting yourself. This was probably most impactful for how I view my social media presence. I never have a problem stating how naive I can be and this was one of those times my ignorance was evident. My method of defeating HIV stigma is to put it all out there and dare anyone to say anthing, not taking into account that some things I post may be triggering for others. It is my responsibility to be considerate to that. I'm grateful to Kirsten Schultz and Dr. John Grohol for sharing tips on how to handle that during our Privacy in the Public Eye panel. For example, if you are posting an image of your lab work experience on Facebook, the appropriate way would look like this:
There are many variations of what words can be put in place of "trigger warning" such as specifically what is mentioned, i.e. "may contain an image of blood", "warning: do not read if needles make you uncomfortable", etc. When you place a specific amount of space in a Facebook post, it automatically hides it from the viewer with a "See More" prompt which I used to find annoying, but now see how it's purpose is incredibly beneficial to protecting my audience.
5. Not being a 501c3 does not limit my advocacy work. Thanks to Janssen Pharmaceuticals, Inc., the Community Foundation of New Jersey and online patient advocates everywhere - we can now apply for a charitable grant that engages, informs and empowers patients in our community as well as combatting stigma and isolation. The grant sizes will range from $1,000 - $5,000 and will be held to a project completion in September 2018. This was amazing news as I (like many others) are full of ideas, but don't have access to funding and feel limited in my advocacy reach. There are certain restrictions and qualifications with this grant that you can read about here. I am incredibly grateful to the staff of Janssen and The Community Foundation of New Jersey for providing this opportunity to so many amazing advocates that are truly further empowered to change the world.
This is a short list of things I have learned and put into practice in the past two days after HealtheVoices17. With the network of friends I've established, I know that there will be more and so far I feel more deeply rooted in the work around me, thank you just isn't enough.
Video Glances at Hot Topics in HIV
Undetectable = Untransmittable #UequalsU
Where's My PrEP?
HIV is NOT a Crime
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