Friday, December 1, 2017

World AIDS Day...again

On World AIDS Day last year, I wrote about how I had told another person they had HIV and reflected on how people's lives continue to be turned upside down by a microscopic retrovirus.

Yesterday, the story repeated itself. Again on the eve of World AIDS Day, I found myself sitting across from a young man inside the jail, telling him he has HIV.   

Today, just like last World AIDS Day, my schedule is filled with people from the forgotten edges of society who are all affected by the same invisible infection. 

Over and over, it feels the same: 
Our social worker, asking if I can double book him in again, even though he missed his last two visits. Of course. Because what if this time is the time he comes. 
Our nurse who does medical intakes for the jail, calling to verify the medications of the person who was just released from jail two weeks ago, back again. 
Our electronic health record, notifying me that she is back in the emergency room, high on meth.

It's the same collection of patients, filtering through the jail to the community, then back into the jai. Their promises to stay sober are often unable to stand against the forces of addiction and disconnectedness. It's the same stories of homelessness and untreated mental illness and the struggle to survive. It's the same journey to find healing and worth when the world seems stacked in the favor of anyone else. 

I traveled back to Africa this year for the first time in over a decade. Rates of HIV are going down and treatment is improving, but I still sat across mothers whose babies were born with HIV. I begged a man who drinks liquor instead of taking his HIV meds to go to the hospital because the x-ray of his chest showed tuberculosis. I listened as a teenage girl told me how it wasn't fair that she got HIV but her younger siblings were spared because preventive medications became available only after she was born. 
I recently attended a conference where another HIV jail doctor shared the same sentiment I've wrestled with over the past few years of working in correctional settings: that things may not change. That despite how much a patient promises this is their last time in jail, that we will probably see them back in jail. That our words and medical knowledge and kindness may not be enough to overcome all the other forces of brokenness in their lives. That all we have are single moments to speak love to someone. That the best and most holy thing we can do is be there in those moments offering Love.  

We do it again and again - every time someone is booked back into jail or stops taking their meds or relapses on meth or loses their housing or their temper; every time someone misses an appointment and wants rescheduled when it is least convenient; every time it feels like someone is never going to change.  Because there is Love that meets me again and again - so what can I do but offer that same grace? 
Just like every World AIDS Day, I offer up a prayer: 
That despite how things may seem the same, despite how broken the world appears - that we may always find reasons for hope and courage to love. 

Thursday, December 1, 2016

world AIDS day

Yesterday, I told someone he has HIV. Because somehow, despite 30 years of research and medical advances and prevention methods, there are still 50,000 new infections each year in this country alone and over 1 million people living with the disease. 

By the end of my afternoon clinic inside the jail, I saw 5 more people who are living with the virus.  

One has come back from the brink of death at least three times since the 1980s when he was diagnosed. He somehow lives on. Alcohol and homelessness have made taking his medicines difficult, and his T-cells* have come crashing down again, putting him at risk for those same infections that almost killed him before.

One tells me he is working on the cure for HIV from his jail cell.  Schizophrenia has devastated his mind more than HIV ever could. Jail may be the safest place for him, because at least when he is there, he gets his medicines. 

Another survived lymphoma, as if living with HIV was not enough. 

Two continue to fight the addictions that first led to their infection.

This afternoon, I was at the county's HIV clinic, where I see both my patients who have been released from jail and also other individuals living with HIV in our community: a mother from Ethiopia, her daughter and husband also infected. A young man from Mexico. A young woman from Vietnam. Transgender, gay, straight, people of different colors and different languages, all choosing life and health - even when the path is marked by relapses and depression and hospitalizations and homelessness and discrimination and loss.

So, at the start of Advent and on World AIDS Day, a decade after I returned from Africa, thirty years since the start of this epidemic, and two millennia since the first Christmas, I breathe out a prayer offered up before Hope was born: 

"By the tender mercy of our God,
    the dawn from on high will break upon us,
to give light to those who sit in darkness and in the shadow of death, 
to guide our feet into the way of peace." 
-Luke 1:78-79

*marker of immune function

Tuesday, July 19, 2016

on changing the world

I wanted to change the world. 
During undergrad, a group of my friends started cooking "downtown dinners" - a weekly collaboration of boiling excessive amounts of spaghetti and warming marinara sauce (or on fancier nights, making minestrone soup). We took the food to a courtyard in downtown Gainesville where those who were chronically homeless tended to congregate. The point of the evening was to talk to those who had come to eat. To hear their stories. To listen. 

Being there was hard. It is tough to take in the stories of how someone becomes homeless. It is tough to face the societal issues that underscore these stories: systemic racism, unequal education, untreated mental illness, substance use, trauma. Each week these stories would come out - sometimes cohesively, sometimes shaped by paranoia, loose associations, and angry outbursts. We would listen.  

I don't think any of us were under the illusion that we were making a difference. After three years of these dinners, little changed in the lives of those we sat beside each week. Miss Mary and her collection of mangy dogs still lived in a decrepit tiny house without running water or electricity. Ed kept pushing his shopping cart full of garbage, telling anyone who listened about his mother who had been stolen.* Even though we knew we weren't changing anything, we still showed up each week with pasta in hand. 

A decade later, I found myself working on Skid Row** in Los Angeles during my HIV fellowship. For a year, I took care of the sickest and poorest people in this country.  Most were not housed; for those fortunate enough to be sleeping under a roof, that housing was generally not stable.  For a year, I followed a panel of patients for whom HIV was negligible in comparison to their daily battles for food and shelter and against addiction and mental illness. At the end of our year, my co-fellow and I reflected on our time there: for almost all our patients, little had changed.  A couple patients managed to secure housing. Many more had disappeared from care, lost in the throws of addiction or incarceration. One was murdered. Most are still in the same struggle simply to survive. But we were there. We fought for them to get the medical care they needed.  We listened to their stories. We let it shape our own. 

Now I work in the wealthiest county in America, where poverty and homelessness remain invisible behind the wealth that saturates the Silicon Valley.  Many of my patients are homeless, or will be once they are released from jail. I know that the thirty minute encounters I have with my patients are never going to be enough to undo the injustices in their lives. I can choose the best medicine and carefully explain their health conditions in terms they can understand. But the reality is they leave their visit with me and return to worlds I can't imagine.  Whatever love and compassion and patience I put into our encounter, it can't undo the crack their mother may have smoked while she was pregnant, or the multiple foster homes they were shuffled between, or the gang that was the first place they felt accepted, or the meth addiction that fuels cycles of incarceration, or the criminal charges that unfairly limit future employment and housing and the right to vote. 

There are millions of places of brokenness in this world, and as Sarah Kay so beautifully puts it: "No matter how wide you stretch your fingers, your hands will always be to small to catch all the pain you want to heal." 

I've stopped wanting to change the world. I still seek out the places that are broken, where injustice seems to have won. I still sit and listen and ask the questions whose answers will break my heart. But I don't go to change anyone, because I can't. I go because God is there. I go to love.  

I got a text this week: you saving the world today? 
Nope, never saving the world. Just trying to be love, and praying that in this world that has gone mad with violence and hate, that Love would be what saves us. 

*his mother had not, in fact, been stolen. We did track her down; she was living in a nursing home, trying to recover from the strain of years of caring for him and his profound schizophrenia. 
**yes, this is a real place. 

Tuesday, April 21, 2015

offering hope

The most common question I get asked when I am seeing a patient who was just diagnosed with HIV in the emergency department is: am I going to die? 

Over and over, I offer reassurance: this is not a death sentence. 

Even to the sickest of patients, I still reassure: this isn't a death sentence. Throughout this year, I've seen people on the edge of death because of complications from undiagnosed HIV. They have severe pneumonia, brain infections, meningitis, or cancer. A handful have had single-digit T-cell counts (normal is around 1000; AIDS is less than 200), and they still manage to survive. 

Recently, a young man came to the emergency room with severe pneumonia like so many others I have seen this year. He was diagnosed with HIV in the emergency department. His T-cell count was 10. When I met him, he begged me to tell him that this wasn't a death sentence. I reassured him that even people with low T-cell counts can start treatment and live long healthy lives. Nothing suggested he might not survive. But things took a turn for the worse; he died a few days later. At age 38. Within 2 weeks of his HIV diagnosis. 

I felt terrible. Because I reassured him that this wasn't a death sentence. Because by itself, HIV isn't. Even with pneumonia like his, it almost always isn't. For him, it shouldn't have been. I hate when patients are given false hope. I felt like I had lied to him.   

Last week, another patient came in. Instead of pneumonia, he came in because he was confused and weak. In addition to being newly diagnosed with HIV, there was a huge mass in his brain. This time, I knew that the odds of his survival were probably low. Like everyone who finds out they have HIV, he begged me to tell him he isn't going to die. I struggled to find the words. We don't know yet exactly what is in your brain. It's probably cancer, and it's probably not good. But no matter what, we are going to be here and take care of you. He died eight days later. 

Most cases of HIV that are diagnosed in the emergency department are not this severe. Most are people who came to the emergency room for something minor: an abscess, a stomach bug, a cold. Because an HIV test is ordered for everyone, it is discovered. 

In these people who are otherwise well, I struggle with how to offer reassurance without minimizing the realities of living with HIV. Because it isn't a death sentence. Because there are amazing treatment options available. Because most people with HIV live long, healthy lives. Because most people with HIV in this country die from something other than HIV. But it still is a life-changing diagnosis, and those promises of health are contingent upon rigid adherence to a combination of medications. There are still losses to grieve. Life won't be the same. But just because life won't be the same doesn't mean it can't still be beautiful.   

Friday, March 20, 2015

healthcare privilege

The first time she stumbled into our clinic on Skid Row, she was on the brink of death. A huge wool coat hung over her 83-pound frame even though it was 90 degrees outside. Thrush crawled out the corners of her mouth and over her lips. She'd been in the ICU last month; she never finished the antibiotics for the AIDS-related pneumonia she had. Now her cough (and every other concerning symptom possible) was back: 
Her blood pressure was 86/40; there was no choice but to send her to the emergency room. We gave her a liter of IV fluids while waiting on the ambulance to come because we knew she might wait a while to see a doctor once she got to the hospital. The wait to be seen by a doctor at LA County Hospital can range anywhere from 8-36 hours. We hoped that sending her by ambulance might expedite things. Sadly, it was almost 24 hours before a doctor saw her, and 28 hours until the necessary chest x-ray was done. The previous pneumonia was still there, though slightly improved. She was released the following morning after a couple doses of IV antibiotics, back to the court yard on Skid Row where she slept. 

Martin Luther King, Jr. said, "Of all the forms of inequality, injustice in healthcare is the most shocking and inhumane." These inequalities become more glaring when I find myself on the privileged side of healthcare. On the same campus where LA County Hospital sits, half a mile down the hill, is a smaller private hospital. Recently, I found myself having to access their services.

I was sent from my doctor's office to the hospital's equivalent of an emergency room. It was less than ten minutes from when I checked into the emergency department until a doctor saw me. Over the weekend when I felt worse, the on-call doctor sent me back to their emergency room. Within thirty minutes, IV fluids were running into my dried out veins. And two days later, when it was finally clear I had to be admitted, it took under an hour to transfer me from my doctor's office into my room. 

Beyond the speed and access to services, I carry additional privilege: speaking the same language as my doctors, having the knowledge to ask questions about my treatment, and being able to read the prescriptions I was sent home with (and a home to return to)

I struggle with this privilege. Because there is no reason my patient should wait 28 hours for a chest x-ray, when in that same amount of time, I made it to a room, saw the medicine team taking care of me twice, and watched 17 episodes of Friends on TBS. Though our country is trying to lessen these disparities with things like Obamacare and the expansion of Medicaid, we still have a long way to go until everyone has equal access to healthcare. Until then, I'll keep fighting for my patients to get the care they deserve. 

p.s. - in case you were wondering, my patient is doing great. She is now on HIV medicines, has gained 40 pounds, has been living in a medical-transitional housing unit, and will be getting her own place next month after 28 years of living on the streets. 
and i'm doing much better too. :) 

Monday, December 22, 2014

Christmas candles

The recent losses and outcries for justice in Ferguson and New York hit close to home because twice a week I work in the Los Angeles County jail, caring for men who were fortunate enough to survive their arrests. Most are young black men, who are arrested disproportionately compared with their counterparts of other races. 

I never ask my patients why they were arrested. 
Instead,I ask: what are your goals? 

The answers are humbling:
I'm taking classes so I can keep custody of my son. He's nine months now.
I want to have my own Christmas tree someday.
I'm gonna open my own accounting firm; I only need six more credits to finish my degree. 
I want to be a hairdresser. I have a lot of sisters; I'm really good at doing hair. 
I've never walked on the beach with my friend; I want to do that someday. 
So as Christmas comes, I light candles:
A candle in memory of the lives who have been lost. 
A candle for peace, that there would be racial healing and justice in this country. 
A candle of hope, that these men will get the chance to live out these dreams. 
Wishing you a new year filled with hope and peace. 

Tuesday, September 23, 2014

you can't give hugs in jail

First, some background: 
The LA County Jail is the largest jail system in the country (and possibly the world)It is made of up 9 different facilities that house 15,000-20,000 inmates at any given point in time. 

Men's Central Jail is one of these 9 facilities. It can house up to 5,000 inmates. It is located on the northeast edge of downtown Los Angeles. Five percent of the inmates in Men's Central Jail have known HIV. I work there 2 days each week providing HIV care.
To enter the jail wards, you have to go through a sallyport (aka cage) - where you enter through one gate, which closes behind you, then wait until the second gate opens into the ward. It's a little intimidating. 

I was given a couple pieces of advice for working in jail:
1. Wear pants. (Pants as opposed to my usual dresses. Not pants as opposed to nothing.)
2. If you get lost inside, don't wander. Just fall to the ground and start shaking. A security camera will eventually see you and send help. (I have yet to need this.)

One of my first patients was a young man who recently moved to LA (as always, details changed to protect privacy). He found out he had HIV a while ago but hadn't seen a doctor yet. Despite violence in his family growing up, he'd come far in life. He was credits away from bachelor's degree and had plans to open his own company. He was well-educated about HIV and what it meant when someone had progressed to AIDS. But that knowledge didn't prepare him for the fact that his infection had gone that far. So this beautiful boy, who I'd already invaded with personal questions and now broke crushing news to, started to cry. Because he hasn't lived a quarter of a century and already has AIDS. Because whatever hope led him to LA has been derailed by incarceration. Because his momma sits across the country and has no idea her son is in jail or that he has been living with HIV. 

In any other setting, I'd reach out and touch him - place a hand on his arm or pat his shoulder or offer a hug. But you can't give hugs in jail. So I willed my eyes to speak what I couldn't communicate with touch so he would know he is not alone. Over and over, I reassured him: this is not the end. things can get better. you can get better. 

He was released the next day. He knows where to find the clinic where I work. I hope he comes. I owe him a hug.