It could almost have been a Saturday Night Live skit. I wish to God it was. Someone came into my hospital room wearing a yellow suit straight out of Star Trek. Doctors then arrived to add what to me was just technobabble. Well, they said, you have Methicillin-resistant Staphylococcus aureus (MRSA). And hepatitis C.
I can laugh a little about it now, but it still makes my blood boil. How many more of us have to die? Just how fucking many? All because almost no one cares about people who use drugs.
It was back in 2004 when I had that terrifying experience. I was fairly new at drug injection, and had no access to sterile supplies or reliable information. Older drug users and their knowledge were my only hope for staying safe.
I started to run fevers, and to develop abscesses on my body that weren’t connected to any injury or injection site. One evening, I found the courage to walk into a local pharmacy and ask the pharmacist what happens if your blood becomes infected. He answered very matter-of-factly.
“You die, dear. You die.”
In the hospital, I had no idea what the diagnoses they had given me meant, neither the MRSA part—referring to a group of bacteria that cause hard-to-treat staph infections—nor hepatitis C.
But I learned many lessons. One was that we need to inform ourselves when nobody else takes the trouble. Hospital policy and our medical system create deadly barriers for people who use drugs. We are then not able to access the help we need and are left to deal with life-threatening infections by ourselves. When they have security searches and room sitters, leave us in pain and withdrawal and refuse to allow any guests for us, we leave against medical advice.
Here I am again. Here is the truth, after seven or eight months of shame and secrecy.
My developing these infections had really been a toss-up, it turned out. People who inject drugs are at their most vulnerable to hep C transmission in their first two years of injecting. I would hypothesize that this vulnerability has only increased at a time when more people, in my experience, now begin their drug use injecting, rather than coming to it via snorting or smoking.
I hoped I would never have another experience like that, but that is not my reality.
Here I am again. Here is the truth, after seven or eight months of shame and secrecy. Throughout that time, I have been hiding wounds and abscesses. Terrified, I have taken different assortments of antibiotics from Canada, and watched myself get closer to death day by day.
For a few years before the pandemic, I traveled as part of my job. Every other week, I was in a new city. I was on methadone, but the clinic and its requirement of regular attendance, together with all the hassle of guest-dosing while I was away, made this all but impossible.
If you’ve ever been forced to participate in methadone guest-dosing, you’ll know that it’s expensive as shit, and they do all they can to make it inconvenient and inaccessible. So instead, I would often just get whatever I needed to be well in whatever city I happened to be in. It wasn’t exactly what I wanted, but this was the only way to travel without the insanity of the methadone clinic.
They told me that I had failed at the treatment they’d offered.
That’s why I tried to move from my methadone clinic to a buprenorphine doctor. It would allow me to travel without dealing with the restrictions of the clinic. I tried to make the switch, but it was a total disaster. I wound up being thrown out of the clinic for missing days due to travel and drug use. I tortured myself trying to transition, but ultimately couldn’t do it.
With my head down, I called my methadone clinic and asked to come back. They were less than kind; instead of welcoming me back and helping me, they told me that I had misused the clinic and had failed at the treatment they’d offered.
Despite everything, I still could not believe they would deny me all services. How could they treat me this way? I had been a client of that clinic for over 10 years, paying upward of $14 a day. When I think of the money alone that I must have brought them during that time, surely that gave them some incentive to treat me with dignity and decency? They branded me a failure instead.
The truth is, for all my struggles, I did well during my years at this clinic. I graduated college and grad school. I lost my daughter to an OD and had my leg amputated, and I kept going. I became the executive director of Urban Survivors Union and a national leader in harm reduction. But to this program I was a failure.
I began to look for another clinic that would take me. But this was hugely problematic. My benzo use was a problem, then my Ambien use; places wouldn’t take me unless I quit those drugs first. I have been on benzos and Ambien since I was 16—including the entire decade I have been on methadone—but they didn’t care. They would not move my dose of methadone up past 40 mg, which wasn’t enough.
I ended up traveling one hour each-way every day to get an inadequate methadone dose.
The one clinic I eventually found that would take me was miles away. So I ended up traveling one hour each way every day to get an inadequate methadone dose—they would not move my dose up past 40 mg—all when I had a clinic five minutes from my house that wouldn’t allow me to return.
After eight months of this, my frustration reached an all-time high. I was using, because the methadone dose wasn’t enough to hold me.
Ever since right after the pandemic started and our drug supply went wacky, the dope I was doing had been strange and getting stranger. At Urban Survivors Union, we were donated the money to buy a mass spectrometer. This is how we discovered the horse tranquilizer xylazine in the drugs I was using. Without the mass spectrometer to indicate what was behind the most frightening injection wounds you could imagine, I would have surely died.
But I was too traumatized to seek help from the doctor. My 2004 hospital trip was only one of many scarring experiences. I am disabled and have vision in only one eye. I spent years being mistreated and harmed after being hit by a car and losing my leg in 2014. My PTSD is real.
So what did I do? I began treating myself with antibiotics I was able to procure, and made very clear to my loved ones not to ever try to make me go to the hospital. And my health got worse and worse. As my friends urged me to go to the doctor, I tried to think about all the reasons I want to live. I tried to be brave and strong. But all it amounted to was me curled up in a ball, trying to breathe.
I had lost all the weight I could lose. I was pale as a ghost, exhausted and struggling to breathe. My hair was falling out.
My injection wounds were just one of many side effects as my body was slowly poisoned. I was scared, for me and for everyone else who might be injecting this poison thinking it was dope.
I had lost all the weight I could lose. I was pale as a ghost, exhausted and struggling to breathe. My hair was falling out. I was trying to cope with this while getting off of benzos and Ambien as fast as possible.
I finally decided that the shame and secrecy had to stop. I reached out to my colleague who is an epidemiologist.
My colleague convinced me that I needed to seek medical help for my wounds and met me at a sympathetic wound care doctor. Turns out, I had a 2.9 hemoglobin, was having a medical emergency and needed to go to the emergency room.
This is when I fell apart. I could not stand a hospital, the treatment. I could not face the hateful people I would be forced to deal with. I could not deal with the withdrawal I would most certainly face if I went. I said I would rather die, and I meant it. But Don, my partner, took me to the hospital. As he drove me down I-40, I was on the floor of the car, hyperventilating and hysterically crying, “I can’t do this!”
Like every other experience of this kind, it will deter me from seeking help again.
My colleagues worked on making a plan so we could better ensure that I would avoid emotional abuse at the hospital. They did everything they could. I had health advocates with me; my colleagues themselves came to offer support.
I am here to report that while all of this made it possible for me to get a blood transfusion and get some help, this trip to the ER was just as painful and traumatizing as many of my other experiences. We face policies designed to violate our basic human rights, and we face stigma: We are treated as if we did this to ourselves and deserve our condition. On top of being scared and in full withdrawal, this was another experience with hateful nurses and indignant doctors, with a complete inability to listen to a patient and respond to basic needs. Like every other experience of this kind, it will deter me from seeking help again.
Drug use is simply different than it once was. As my good friend always says, “This ain’t your mama’s heroin!” I feel like I need to scream this from the rooftops. So many of our policies, bad enough in their own right, are connected to drugs and situations that are no longer relevant.
So many health care providers still operate as if we are dealing with heroin, which we are not. We are dealing with fentanyl and tranquilizers and never-before-seen cutting agents. We are dealing with street prices during the pandemic that double and triple and prompt desperation. Rather than getting clients on stable methadone doses as an urgent priority, clinics continue to throw up barriers. Our access to anything that looks remotely like safe supply is nonexistent.
The drug-user health clinic that I run in North Carolina has been seeing skin and soft tissue infections unlike any we have known before. People identify cuts and wounds that “just appeared” from nowhere, just like my own.
We use fentanyl test strips, but these unsophisticated tools aren’t enough when there are so many substances in the mix. Drug-checking resources must be upgraded everywhere.
Regulators look for things they can count before they issue help. I suggest they count the bodies lining up at their feet.
Urban Survivors Union has been working with methadone state regulators around the country, trying to make changes to methadone policies while the country is closed. We are fighting in hopes to reopen the country with policies that actually have the ability to save lives. We must deal with our broken medical system that condemns people who use drugs and violates our human rights with little to no thought.
We speak to the regulators and they say they are sympathetic, but it does not seem as if they are able to make any real change. Regulators look for things they can count before they will issue help. Well, I suggest they count the dead bodies lining up at their feet.
Drug-testing equipment saved my life. We have a treacherous drug supply with deadly poison mixed in. I am the leader of a drug-user union. If I can die from our poisoned drug supply, so can anyone. We must act now to get the safe supply and resources that we need. We must not be silent, ashamed or scared. We must talk, even if we are hated. We must scream, if that is what it takes.
Please fight with us. Stand with us. Help us in ways that are useful. Listen to people who use drugs and develop policies that place our health first. We cannot afford anything else.
Thank God for Nan Goldin, the artist and advocate whose project funded Urban Survivors Union’s purchase of the mass spectrometer. Her swift action in response to the pandemic emergency saved not only my life but many others. Thank you, Nan. You are a true hero of mine. Thank you to everyone at USU, the USU methadone team, to my friends who are scientists, to Nab and Roxanne, to my friends Erica and Allison who cared for me when I was at my worst, and to my lover and friend Don. You kept me alive day by day. I love you all.
Here is a video, created and developed by USU and produced by Knina Strichartz, to thank Nan from all of us.