2016 national tb conference

Friday, February 26, 2016

airplane

I’m writing this from about 30,000 feet up in the air. On my flight traveling from Denver to Des Moines. I’m looking forward to tonight since Ashley, Nick, Chelsey, and Dominque will be picking me up from the airport and we’re planning on getting a bite to eat in Des Moines. While, I made new friends and connected with an old one, I miss my friends back in Ames! I miss my dog, Mars! I’m looking forward to being greeted by some uncontrollable energy paired with a rapidly wagging tail.

I’m writing this blog to reflect upon my experience this week at the National Tuberculosis (TB) Conference and more specifically the TB Survivor Training. It was truly a special experience that I am so incredibly grateful I was able to be part of it. For that, I am so so thankful to Judy and the folks who work for Wisconsin Public Health for sharing the opportunity with me and so so thankful for Donna, Teresa, Carrie, and all of the TB partner organizations and sponsors that made this all possible. Denver was super sweet and I will definitely visit Colorado again to explore those majestic looking mountains at some point. Iowa, I am coming back to your fields of corn in much disappointment and regret.

Well, we started out the survivor training by introducing ourselves and sharing our personal stories. We focused on storytelling and crafting our stories in effective ways to engage in advocacy work without compromising our authenticity. I liked being in a space where our stories and the act of storytelling was sincerely valued and appreciated. It is the stories that should be at the center of this work and I felt that from the organizations present. I’m down with that. And I’m so down with storytelling as a form of activism. For our introduction, we were also asked to select an image from a large pile and share what it symbolizes for us in regards to our experiences with TB. I picked the image below. It’s of a young person in a dress and boots standing in a puddle of water. They’re holding an umbrella as the rain falls. I picked this because every time I reflect on my experience with TB, I, without hesitation, think about the wonderful people in my life and feel a great sense of gratitude. To me, the rain and puddle in the image symbolize struggle and suffering. And the umbrella symbolizes my loved one’s relentless support for me and always, always trying to shield me from that struggle and suffering. I am truly grateful for that. TB has made me a more grateful person. And I honestly think TB has also made me a better person in many ways (I know this comes from an extremely privileged set of circumstances). At the same time, I don’t want the stigma to limit the importance and significance this illness has had in on my life and my identity.

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I am so fortunate to have had the opportunity to connect with fourteen other TB survivors – to have heard their stories and to have those individuals listen to mine. I entered the room on Tuesday feeling trust, solidarity, and love and I certainly feel those things leaving. There were so many parts of their stories that so deeply resonated with my experiences and there were so many parts of their stories, almost unimaginable, that moved me in ways that made my heart a little bit more tender. A very special group of people it was. I don’t believe I’ve been around a group of people who were simultaneously so truthful, resilient, gracious, and joyful.

Although, my father and brother both had MDR-TB, I haven’t heard too many patient/survivor stories about TB so to hear from fourteen other people was super fascinating. After hearing stories from survivors, there were multiple themes that surfaced. One thing I’ve given some more thought is the mental health and wellness of TB patients. It certainly appears that many TB patients suffer from anxiety and depression. Although, medication can be partially responsible for it, isolation is most definitely another contributor. Not feeling connected to others and the rest of the world can be damaging to one’s health and wellbeing. In addition to these two contributors, the stigma that surrounds TB, infectious disease, and other illnesses also creates challenges. It can be extremely dehumanizing to feel the stigmatization of your lived experiences and that your literal breath is unwelcomed and deemed harmful to others. The thing that makes you most human and alive – your breath – is not desired in this world. This poem by the brilliant Nayyirah Waheed makes me think more about that. About how my support system, that consisted of family and friends, were always the ones who supported my breath. And made me feel alive. Always.

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I also wanted to touch upon TB and its intersections with race. Part of me believes that while TB kills 1.5 million people every year it isn’t necessarily a major concern to many in the United States because of who it disproportionately affects and destroys – black and brown bodies. Not only are the victims often People of Color, they are often non-American or “foreign-born” People of Color (I also don’t like much of the language that is used in the medical field when talking about common TB patients – it feels xenophobic and is very U.S.-centric). I think we as a society and world have decided that black and brown bodies in “third-world countries” are not as deserving of the same life, resources, and humanity and that hurts. I wonder if this disease would have been eradicated if it affected more White people. I wonder at what point people will start to care. I think it’s saddening that it may be more effective if we start to shift the conversation to money. To talk about how treatment of one individual patient can cost up to $250,000 and how so much money can be saved if we channelled our energy into prevention – having this be the reason to care, as opposed to the fact that many people die every day from this disease and that People of Color and our communities are worthy of life and humanity.

I did learn a lot this week. I learned  how we haven’t yet made significant progress in eliminating TB. How so many of the same drugs are still being used and how ineffective some of them are. The duration of treatment is far too lengthy especially considering how aggressive the regimen usually is. Another commonality among many of the survivor stories was how terrible diagnostics is for TB. Misdiagnosis and delayed diagnosis is unfortunately very prevalent in TB cases and that has a lot to do with the lack of awareness that exists in United States about TB. We desperately need to advocate for the research funds to improve diagnostics and develop better treatment.

All in all, I’m so thankful to have connected with some fantastic organizations that work tirelessly to eliminate TB from our world and I’ve grown more deeply committed in doing whatever I can to help achieve that goal. March 24th is World TB Day and I hope to make a difference by spending that day on Capitol Hill. Let’s advocate for better diagnostics, treatment, and prevention, and lets do this all while considering how harmful stigmatization of TB, other illnesses, and disabilities can be. The stigma that exists surrounding TB is the key component in the illnesses’ failure to foster a community of patients/survivors. While TB has become the leading infectious killer and takes approximately 4,400 lives daily, there fails to exist a strong and sustainable movement that organizes people to take action and advocate for our communities, and for a better world. That can certainly change. The people and the energy I was around this week makes me believe. And I feel good about that.

– tenzin

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