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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the best day of my life, yet :)

“One day, in retrospect, the years of struggle will strike you as the most beautiful.” – Sigmund Freud

8.7.2015
Wow. What a beautiful day it is!!! After 28 months of treatment with over 8,000 pills, I’m happy to officially complete the treatment process and successfully recover from Multi-Drug Resistant Tuberculosis (MDR-TB). I’m forever grateful for the love and support of my family and friends. I am lucky to have experienced the past couple years and to have the opportunity to understand that I have very special people in my life. This life is precious and beautiful. The wonderful opportunities it presents – to suffer and to grow, to learn and to love, and to appreciate the love, support, and life of family and friends. I’ve learned to appreciate the small things – they’re the things that warm the heart. Appreciate human interaction and contact – it’s in our nature to desire being loved and appreciated. Thank you to all you who called, texted, emailed, visited, took walks with me, brought food for me, checked in on me, cared for me, loved me. It is all appreciated. Your love and support simply made it easier. No one deserves the love I have received from my family and friends and for that reason I have no other emotion I could possibly feel more than to feel grateful.

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I would like to use this space to share a little bit about my experience in the hopes that it might help someone somewhere, to create some space for education and awareness about Tuberculosis, and to express my sincere gratitude to my loved ones. It is with great joy and serenity I write this.

On Thursday, April 25th, 2013 I was in a 1:1 meeting with Maryke, my hall director at the time, and we received a call notifying me of something that would change my life, especially the next few years. I got the news that I had tested positive for Multi-Drug Resistant Tuberculosis (MDR TB), an infectious deadly lung disease that kills approximately 1.5 million people every year. The death rates in some countries around the world are staggering. I try to remind myself that I am no better and that I am no more deserving of life than those who die from the disease. I am extremely privileged and lucky to say that I did not have to be concerned about death because of my extraordinary access to health care. I understand in many ways life itself can be a privilege. Maryke received the news with me in the most positive and humorous of ways. Thank you so much for that. I don’t believe there was a single person that could handled that situation better than you. You made it as easy as possible to receive the news, took care of me, and unconditionally supported me. Thank you.

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Me and Maryke on the way to Gundersen Lutheran Hospital (we’re both smiling 🙂 )

During my time in quarantine at Gundersen Lutheran Hospital in La Crosse, the nurses took fantastic care of me. Before telling my parents, I told my brother of the situation. He was incredibly supportive and with him going through the same situation several years back he became an adviser of sorts because of his experience. It was also very comforting to know that my brother understood what I was going through. Ashley, Nyima, MCG, Ian, the Hutch staff, members of SFT, and my parents were wonderful in this time. You all kept me in great spirits and full of positivity and optimism. I made it a priority for me to control my mind as much I possibly could. One of the days at the hospital, I saw a wasp in my room. I spend about half an hour catching it, I literally didn’t have anything else to do lol. But I was also motivated because this wasp was trapped in this room just like me, and I thought it would make my day to release this bee back to their true home – free from walls. So I caught the wasp and asked the nurse to release it. She replied with a kind smile, “my pleasure.” It feels good to help others. I thought I’d share this because my mom told me to always share my good deeds. #CompassionInAction #10PlusKarmaPoints #JK

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Prior to diagnosis, I had been experiencing chest pain, shortness of breathe, a sore throat, and fatigue but the side effects from the medication were much more harsh and challenging. I’ll just start with having a PICC line in my arm for 3 months. That really, really sucked. But I just had to remind myself it’s for the better and it’s making me better. And for that, thank you PICC line. Below is a picture of my picc line in my arm. With treatment and being on a rigorous regimen of many drugs, I’ve experienced an unpleasant variety of side effects from nausea, fatigue, restlessness, anxiety, loss of hearing, temporary impairment of vision, peripheral neuropathy in my feet, and loss of appetite. I’m pleased to say that most of these issues have subsided.

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I remained in isolation for 139 days over the summer of 2013. I was able to spend time with family and friends during this time if I was outside. TB is a communicable disease however there are many misconceptions about TB because of the lack of education and awareness in our culture. With the movement of free flowing air and by keeping a healthy distance/wearing a mask, it was safe to do so. TB is a difficult disease to overcome because of the stigma that exists. I imagine there are many people who feel extremely isolated and feel that no one is in their corner. Many fear how they will be perceived by others if they share about their illness. There are people who don’t feel they have the necessary support to continue the rigorous treatment. To TB patients, I share my story in the efforts to let you know that you are strong and resilient. If you ever need someone to chat with, please email me at tenzinkunor@gmail.com. It would be my pleasure to support you in your recovery. Disease is part of the human condition. Always has been and always will be. I think it’s important to understand that the enemy is the disease. Not the person who is the victim of it. I think it’s extremely dehumanizing and deplorable how we treat people with certain diseases.

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artwork by Lisa Murphy

“Tuberculosis (TB) is a disease caused by bacteria that are spread from person to person through the air. TB usually affects the lungs, but it can also affect other parts of the body, such as the brain, the kidneys, or the spine. In most cases, TB is treatable and curable; however, persons with TB can die if they do not get proper treatment.”

To provide some more insight, TB is a disease transmitted when bacteria is put in the air from coughing, sneezing, and sometimes speaking. Levels of contagiousness vary depending on the patient. For myself, neither my parter Ashley, nor my roommate at the time Ian, were transmitted the disease. TB is not spread by shaking hands, sharing food or drinks, sharing toothbrushes, nor kissing. There is a lot of misinformation regarding TB that further the stigma around it.

I encourage you all to learn more about TB. I’ve provided several links below:

After weeks and weeks of thorough, reliable, and scientifically proven testing, my sputum cultures tested negative on July 31st, 2013 but this is determined after the culture is allowed to grow for 6 weeks. So on September 12th, 2013, I was officially deemed non-communicable. What a glorious day! I felt so free being able to leave my house and explore all that I wanted without a mask. At the same time, I had felt uncomfortable around others because I had grown accustomed to feeling that my existence was contaminating the air. Not a great feeling. I slowly outgrew this feeling but sometimes I still feel it. Thank you to everyone who made me feel comfortable. Thank you to everyone who have given me strength and comfort. It is all appreciated.

Amala, Pala, Chocho and Everyone Else
It all starts with family.

Chocho Tenkhel, thanks for being in my life and looking out for me since I was brought into this world. Thank you for a wonderful childhood and for your support the past few years. Thank you Amala and Pala for you infinite love, care, and wisdom. I am so grateful to have such loving parents who I find to be wonderful role models. I’m lucky to have had you in life the past 25 years and for all the things I’ve learned and continue to learn from you. During this time, I’ve also developed a deeper sense of appreciation for my parents. They unconditionally cared for me, accompanied me, fed me, and went on many walks with me. I honestly believe that the timing of my illness has been a blessing in disguise as I had such a special opportunity to spend a summer with my parents in a way that I probably never would have nor will ever. In a way, I was allowed the opportunity to be cared for and to be loved and to be reminded of what unconditional and authentic love and care looks like. My dad has taught me what it means to commit  yourself to the people you love and to your community. My mom has taught me to love others unconditionally and to enjoy life to the fullest. She’s the most creative, ambitious, and compassionate person I’ve known. I love you both. I’ve felt challenged physically and emotionally, and I’ve been reminded what unconditional and authentic support looks like. Never have I been more appreciative of human connection and interaction. I owe much of my success to the wisdom of my parents who always find ways to motivate, but more importantly, humble me. They continuously challenge me to be reflective and compassionate – to live gratefully and gracefully.
amala7.4.2013 – one of my favorite pictures. my mom took me to see the fireworks 🙂

The best advice I got throughout all this was from my little cousin, Tenzin Nyima (Tan), who was 11 at the time. He wrote a letter to me and it said, “Whenever you feel angry at the world, go outside and take it out on nature.” And that I did. During several months of isolation I spent a lot of time walking around the neighborhood. Going to the lake and appreciating everything that the world has to offer and everything I am able to discover. Also, thank you Lungrik, you are the sweetest boy and I’m so proud and happy to be your big bro. You make me so happy! You are a little child just full of life – I hope you never lose that. Everyone else in the U.S., India, Nepal, England, and France, I love you and miss you all very much.

Hutch Family
Lindsay, Kiersten, Amanda, Maryke, Tricia, Jenna, Phil, Kara, Nic, Jess, Caitlyn, Katie, Kenzie, Taylor, Ruthann, and Tyler. Thank you for being so supportive during a difficult time for me. I truly appreciate everything you did for me that year and for allowing me to be part of something special. I feel that this is one of the few groups of people who truly understand me. Thank you Maryke for fostering a team like this and for encouraging us to always express our passions. Thank you all for visiting me numerous times while in isolation. Thank you for packing up my entire room. Thank you for the cards and the phone calls and texts. Thank you and I love you all.

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Ian
Thank you for all your love and support. Thank you for visiting me like almost every other day during that summer. Thank you for keeping me happy and excited about life. Thank you for getting Taco Bell and sitting outside and watching the Spurs beat the Heat with me. You are truly one of the most caring people I’ve ever known and I’m absolutely grateful to have someone like you in my life. You inspire me in so many different ways. You care about things. You care about the world. You care about people. I love you bruhhhhhh!

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Nyima
To my best friend since we were 10 years old. I love you no matter what. Thank you for always supporting me and always being there for me. You are so selfless and true to yourself, and I’m so grateful to have someone to grow with. My childhood is very special because of you. I feel like you know me better than anyone else in this world. I am certain I would not be the person I am today if it weren’t for you. You are truly family to me.
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Odis, Nyima, Justin, Nuahya, Peter, and Skyler, I will forever cherish the good times we had in La Crosse. Thanks for supporting me during the past few years. You’ve all made me a better person and the bond we have is special to me. I love you all and always will.
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Tsenamgyal, Rapten, Dhondup, Lhawang, Dorjee, Dorje, Tsetan, Niyma, Kherab, Jigme! I love you all!!!!!!!! Thank you for all the support throughout the years. You are the definition of what a team is – sacrifice, love, and joy. Very few things make me happier than hoopin’ with y’all. Rennebohm, Princeton, it could be wherever. I hope to move back to Madison one day so we can relive parts of our childhood.

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the get well soon card they gave me #59ers4Life #Brothers

Chelsey and Evan
Thank you Chelsey for your kindness and always supporting and affirming how I feel. Thank you for constantly asking me about my health and how I’m doing. Chelsey even asked how my feet were doing on her wedding day. On. Her. Wedding. Day. When like a billion other things were happening at the same time. #ClassicChelsey. It’s something I really appreciate. I think that’s something we can all do better. While health is often something very private in our lives, sometimes it shouldn’t be. The stigma about health creates a lot of barriers. Barriers that limit us from caring about one another or atleast expressing our care and concern. You have been a wonderful source of support and understanding. I really appreciate you.

Evan, thank you for being a wonderful friend this past year. Thank you for supporting me personally and professionally. I struggled at the beginning of last school year with a loss of appetite and fatigue but I remember really appreciating my time with you and how it often provided a space to just laugh. I’ve learned to appreciate humor and how it has the special ability to make you forget about your pains and struggles, even for just a second. Humor brings laughter, joy, and happiness. We could all use some more of that and we could all use a little bit more of you in the world. Thanks, friend.

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My Caretakers
I want to express my sincere appreciation for the work you do. The past couple years for me has been a wonderful opportunity to grow and to reflect on how privileged I am. Everyday when I come in to the health center I tell myself how fortunate I am to receive the treatment I need to recover. My interactions with you all constantly remind me that hospitals and health centers are spaces of genuine care and compassion, and for these things, I am truly thankful.

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8.7.2015 – Kristin, Dr. Pepperell, Judy and I

Dr. Pepperell – Thank you for your dedication to my health. You are amazingly brilliant and throughout my treatment process, I have always had full confidence in you and your judgement. Thank you for all the great work you do in the field and your commitment to making the world a better place.

Kristin – Thank you for always being so kind, accessible, and accommodating. I really appreciate you and your commitment to my health and well-being.

Jen, Tammie, Jane, Bev, Kathy, Ronda, and the rest of the Theilen Student Health Center staff – During my time at Iowa State University, everyday I would go to the health center to take my medication with directly observed therapy (DOT), and every other week I get my blood drawn for testing, and every month I have an appointment with my Tuberculosis doctor back in Madison. It has been a joy to see you every day and I’m very appreciative for all the support and care you have provided. Its truly been a pleasure getting to know you all and I will surely miss all of you. Jen, thank you for truly caring so much about me and my well-being. I’m so lucky to have someone like you during this time. Thank you for your passion to help others and being a wonderful friend through it all. Tammie, thank you for your wisdom, kindness, and for sharing all that knowledge you have about dogs. Jane, thanks for always greeting me, asking me about my day, and smiling. You always gave me a little more energy leaving the health center because of your care and positive energy. Thank you all for having a special impact on my life.

Judy – A special thank you to my personal nurse and case manager Judy, who has been with me since day 1, for all your kindness, support, and genuine care. You became a friend to me very quickly. Thank you for investing your energy in me, not only as a patient, but as a person and a friend. Thank you caring about the things I care about. Thank you for attending the White Privilege Conference with me and caring about my experiences outside of my experience with TB. You have been so patient with me and I sometimes forget that your job is to care for me because you do it so sincerely and compassionately. Thank you and I’ll always remember you.

Cindy and Colin
Thank you for so kindly and lovingly welcoming me to your family. You have cared for me during this process and I really appreciate it. Steak, Ben & Jerry’s, and a movie sometime soon? Oh and cheesecake, pleaseeeeeee 🙂

Dont worry Colin, I’ll bring some momos lol.

Mars
Thank you for bringing a special kind of happiness to my life that I’ve never had before. I’ve always wanted a dog since I was 12 years old and have read hundreds of dog books and finally at the age of 24 I got you! I think it was well worth the wait and I couldn’t ask for a better best friend. You love me unconditionally. You’ve helped me in the past year, keeping me positive, happy, and enjoying the things I sometimes take for granted – enjoying nature, spending time with Ashley, and most importantly simply loving others and undeniably showing it. I’m so proud of the doggy you are and I hope my love I express to you makes you know it.

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Ashley
Thank you for persisting through the entire process and providing infinite amounts of love and support. Thank you for visiting me every other day even though we would have to wear masks during the summer of 2013. Thank you for offering love and understanding and for keeping me happy throughout that summer. Thank you for being compassionate and putting me first so many damn times. Thank you for always being on my side and being by my side. Thank you for being my partner, my soulmate, and my best friend – I couldn’t imagine what the past 28 months would have been like without you. I also can’t imagine what the next 70 years would be like without you. Thank you for giving me hope and happiness and I can’t wait to experience the rest of our lives together. In short, thank you for loving me. I love you.
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And to the many others I failed to mention, thank you. Friends and family – you mean the world to me and I couldn’t be happier to have you during these times and I couldn’t be happier to be a part of your lives. Somo Dechen, Chocho Norgyal, Ashang Namgyal, the Madison Tibetan community – one day I hope to give back everything I’ve gained from this community. Friends and role models at ISU – Elizabeth, Rachel, and Som – you are all brilliant and amazing women of color and I’m so thankful that our paths crossed. And good people like Nick, See, Ibrahim, Maricruz, Thomas, Sara, Joel and the list goes on. Thank you! Thank you! Thank you!

And if you’re still reading this, thank you. I know that was long-winded and I’m typically never long-winded unless I really got something to share. Anyways, I really appreciate it. Here’s to today and our tomorrows. May they be lived with health and happiness.

Love,

Tenzin Lobsang