Marianne Swanson: The Survivor

Marianne Swanson, a senior staff nurse at Grady Health System’s Ponce Center, was born and raised in Brooklyn, in a close-knit Italian-American family and community. She lost her first husband and two of her three children to AIDS, and she is HIV positive. This is her story:

Starting a family: Jeff and I were in a singing group in a Catholic Church, that was where we met. We fell in love and got married in a small Christian church in Brooklyn. We were married for about two years before I got pregnant with our first son, Jonathan. My second son was born in 1985. I remember we had gone to New York to visit when he was 5 or 6 months old, and a friend of mine had contacted me and told me that he was sick with HIV. It was the first time that HIV hit close to me. I didn’t know at the time, hearing about his illness, that it would even come closer.

HIV positive: Our second son, Joshua Paul, was sick a lot. He was over a year old and started getting swollen lymph nodes and a runny nose. Doctors thought he had a mysterious form of cancer. I guess it was in 1987 that Jeff suggested we get him tested for HIV. Jeff had a previous lifestyle that could be cause for an HIV check-up. Sad to say, Joshua Paul’s disease just got worse and worse until he passed away. After he died, Joshua Paul’s oncologist told us his HIV test had come back positive. I was like, OK, well, during his cancer treatment, he had some blood transfusions. She said they were screening the blood transfusions at that point, so there’s no way he could have gotten it from a transfusion, the only way he could have gotten it was from me.

Marianne & Darrell SwansonFrom me? I was like, excuse me? I had always been the wife of one person, faithful to my husband, I’m not a gay man, never had a blood transfusion. What happened? How could this have come to our family? We were advised by our obstetrician and different doctors that all of us get tested for HIV. It was a very long, drawn-out process back then. Jeff tested positive for HIV, I tested positive for HIV. Jonathan, my oldest son, was HIV-negative. I was pregnant at the time with our third child, and the fate of our unborn child was unknown at the time. There was a 50-50 chance she would be positive. That was a grief-filled period.

Holding out: In 1987, my daughter Annalisa was born. She was sick from six weeks of age and was diagnosed with full-blown AIDS. So that was really a hard pill to swallow. After Annalisa passed away, Jeff’s health started to fail. We were just sort of holding out, we knew that there were a lot of things scientists were working on to try to develop a therapy for HIV. It was a little bit too late for Jeff. When combination therapy came out, he was already in hospice care. They did try to put him on an experimental therapy, but he couldn’t eat, couldn’t swallow, never really worked for him. Jeff passed away in 1996.

Remarkable recovery: I feared that I was going to be next. I had just watched everyone wither away and die. I had only 73 T cells. But I was not about to let my last child become an orphan. At the end of 1995, I went on combination therapy—Combivir, AZT and 3TC with crixivan—and showed a remarkable recovery. My HIV became undetectable and my T cell count was above 200. Now it is in the 600 range. I’ve been undetectable ever since. For me, the therapy that came out at that time was literally a lifesaver.

Figuring out a future: I was diagnosed in 1987 but I knew I had it in 1985 because that’s when my son was born. So now here it is, a decade later, and they’re saying, here are these drugs, you’ve got to live, now figure out your life. What does living look like now? Part of living for me was always being involved in a church. I started teaching Sunday school in a church singles group. Everybody in my church, everybody in the singles group, knew about my HIV so I’m like, OK, I’m not here for a man, I’m just here for friends. I told myself I’d be a single parent forever.

Met a guy: There was this guy that I became friends with in the singles group and he kept looking at me with these eyes that didn’t look like friendship eyes. I was like, wait a minute, no, back off, we’re just friends. Anyway, Darrell Swanson entered my life and started pursuing me in a romantic way, which felt so unusual to me because I hadn’t done that for years. He didn’t mind my HIV status. Lo and behold, in June 2000 we got married and have been married ever since.

Back to work: When my son went to Georgia Tech, I went back to work. I always said I wanted to work at Grady, at the Infectious Disease Clinic. I was a patient there and they saved my life. I’ve chosen to do battle as a nurse in HIV care. Now, young people are getting diagnosed without a knowledge or the experiences of the HIV crisis. Some have a hard time maintaining their medicine regimen. They need organizational skills, help with paperwork. And there are still people who are getting diagnosed too late and dying.

Status update: I went from a very complex regimen to a very simple one. I developed some resistance, so I take an additional pill, but it’s still pretty simple. This is all just routine for me. I don’t feel like HIV controls me, I feel like I control it. I’m a warrior.

Go here to watch the stories of those involved and those who benefited from the discovery of 3TC & FTC. Go here to read the full series of blog interviews with inventors, patients, and others.

Nina Martinez: The HIV Positive Twin

Public health analyst Nina Martinez is 35 years old and has been living with HIV for all but six weeks of her life. Her father was active duty Navy, and she’s a twin. She has HIV while her twin does not. This is her story:

How it happened: My twin and I were born 12 weeks early and at that time in the mid-1980s you needed to take a lot of lab work. Because they took labs so often, we were both anemic. We required blood transfusions at 6 weeks old. I was transported to San Francisco and she remained at San Jose, so we got transfusions in two different cities. I ended up with HIV and she did not.

Diagnosis: I didn’t know I was HIV positive until I was 8, in 1991. I got chicken pox like everyone else. It was just an accident that I was tested and a complete surprise. It turned out the Department of Defense knew for a year and a half that the donor from 1983 had tested positive. They had sent a letter to Hawaii, but my family was living in New Jersey then and didn’t get it. After I was diagnosed, I started taking AZT (azidothymidine).

Nina Martinez

Photo credit: Johnnie Ray Kornegay III

Magic Johnson and me: When Magic Johnson made his announcement, I was diagnosed about a month later. That’s the only association I had with it. I honestly believed that Magic Johnson and I were related. I needed someone to look up to. I would go around and tell my classmates that Magic and I were related, and they were very confused.

School days: At 8, you don’t know what HIV is, you just know what you hear on TV. My classmates would tell their parents that somebody at their school was living with HIV. Parents at that time just didn’t want me to go to school with their kids. But thankfully it was against state law to discriminate against children living with HIV.

Teenage rebellion: I used to flush bottles of medication down the toilet as a teen, rebelling to the regimen. I was angry that the responsibility was being put on me. The teen years are hard enough without adding a chronic illness on top of it. At 16 it was quite overwhelming.

Unexpected adulthood: Around that time, I had access to the internet, which was such a huge learning experience. It really shortened the distance between people. I didn’t meet anyone else with HIV until I was 17, despite having it my entire life. My childhood, I was told that I was going to die. And then when I didn’t, and I did graduate high school, it was kind of this unexpected adulthood. “What do I do now? I guess I’ll go to college.” It wasn’t the same as for a lot of people, that it’s expected for you to go to college. For me, it was, OK, now that I’ve survived into adulthood, I need to learn how to manage this, and how am I going to provide for myself.

Insurance cap: Everything revolved around my medical care and getting health insurance, and making sure I could take care of myself. That’s one of the reasons I decided to go to college and graduate school—to get on an insurance plan. But health insurance plans back then, particularly student plans, didn’t have the kind of pharmacy cap that would accommodate the cost of HIV drugs. At the time, there was a $1,000 pharmacy cap. Since just one of my medications was $700 a month, I didn’t really know how to make that work. Now, because of student advocates who are living with chronic illnesses, the pharmacy cap is $100,000, which makes access a lot easier—and it makes it easier for you to get through your college or graduate school experience and help set you up for success.

Spreading awareness: While in grad school I traveled about 30,000 miles cumulatively to talk to college students about HIV and HIV prevention. I spoke about non-sexually transmitted HIV and being a lifelong survivor. I wanted to help make sure that people weren’t scared of being tested

What if time is short?: When I finished my coursework, the first person I knew living with HIV died. He was 31 and I was 25. I had never been to a family funeral, so this was my first experience with death. I saw him about three weeks before he died. That shook me, it kind of set me back. I had gotten used to thinking, “Oh, I’m going to have this normal lifespan.” But when he died, I started to think, am I spending too much time on my academic career when I should be out living life? I was offered a job at the CDC, and federal health insurance was better than what I had, so I started work immediately.

Combination treatment: I went on a “drug holiday” between 2006 and 2011, at which point I was ready to go on combination pills. I took Trizivir, which had 3TC (lamivudine) in it, and went from taking four pills a day to two and was able to sleep through the night. Who doesn’t love sleeping through the night?

Treatment: One of the great things about having access to treatment is that you do get to have a somewhat normal life. You wouldn’t be able to tell I have HIV just by looking at me, it would be something that I have to mention. But again, here come these challenging, long-held beliefs—that people living with HIV are supposed to look sick. People think because I don’t look sick, it must not be a problem for me. They don’t realize all the work that had to go into making sure I had access to medication, like running up student loans.

Lingering stigma: The South is the epicenter of HIV, that’s why I work here. People are receptive to my story, they see me as ‘innocent.’ But when I talk about friends who got HIV sexually or through drug use, they judge them. My friends are just trying to live the same life that I’m trying to live. There is still just that stigma we have to chip away at. Everyone just needs to meet someone with the disease.

Misperceptions: Because people only see what they see, that’s where you get the common perception that HIV is not a big deal, because people think all you have to do is take a medication and then you’re done with it. But they don’t really understand all the economics that go into that. They don’t understand what HIV stigma looks like: the fact that we’re still placing labels on people living with HIV, like, ‘they deserved it,’ or that they’re ‘dirty.’ There’s still this visceral reaction when somebody says they are HIV positive. I get a lot of ‘I’m sorry.’ What are you sorry for? That I lived? At its core, it’s a virus. We should treat it as such.

Overcoming illness: I’ve run five half-marathons and the Marine Corps marathon. I realized that even I had my own internalized stigmas. I thought I’d never be an athlete. I ran for charity, to raise awareness of HIV and also for HIV charities. And as a nod to Magic Johnson. It’s almost like a celebration of my body, paying respect to everything that it’s been through and the fact that it can still do more than I think it can.

Advice to younger self: If I wrote a letter to my newly diagnosed self, the top things I would say are:

  • You’re not going die anytime soon

  • People will say hurtful things, so be prepared

  • People living with HIV are part of the solution not the problem

  • You are probably not related to Magic Johnson

  • Don’t flush your medication down the toilet

  • Just go out there
  • Stigma is going hurt, but it hurts more not even trying to do the things you want to do

Fun fact: I taught Peter Piot, dean of the London School of Hygiene and Tropical Medicine, and co-discoverer of Ebola, the Macarena at the Googleplex, of all places.

Go here to watch the stories of those involved and those who benefited from the discovery of 3TC & FTC. Go here to read the full series of blog interviews with inventors, patients, and others.

Addendum: Nina was the first HIV-positive woman to donate a kidney to a HIV-positive recipient, read all about it in this CNN story.

The Magic of Science and How TMS Saved Me

I used to hate magic shows.

Nothing frustrated me more than trying to figure out how the guy removes the beautiful woman from the box on stage, only to wow the audience moments later by revealing her—in the flesh—sitting in the theatre’s balcony with a big smile on her face. Magicians will never tell you their secrets, they will never disclose how the rabbit got in the hat, much less how he pulled the poor thing out of it. The stock answer, if ever asked, is a smug, “It’s just magic!”

Many years ago I attended a magic show where the showman singled me out of the audience to be his “assistant.” I climbed up on the stage quite sure I’d get the inside scoop on his tricks. I struggled to concentrate while watching the magician’s nimble hands snip a rope into two parts and then deftly join the cut ends back together. When he ceremoniously yanked on the rope to prove to me and to the audience how fantastic his stunt really was, my frustration at not catching how he pulled it off settled it — I was done with magic and magicians! I stopped attending magic shows from then on because they ticked me off far more than they entertained me.

But just as with magic tricks, things in life aren’t always what they seem.

I’ve since discovered that many things in my life have been an illusion, especially traditional treatment for major depression. After multiple, futile trials of medications that were supposed to be the real deal in restoring my mental health prior to and following an unsuccessful suicide attempt, my sister serendipitously came upon a magazine ad for transcranial magnetic stimulation. The headline read: “Treat Depression Without Medication.” I was desperate for anything to pull me out of my emotional abyss, and I had been convinced—along with millions of other people—that medications or ECT were the only therapy options available. The concept that invisible magnetic pulses penetrating my skull could erase all my misery seemed like it might be, well, magic.

Martha Rhodes Photograph

Martha Rhodes and Josie

The F.U.D. Factor immediately set in: Fear, Uncertainty, and Doubt. But such is the case with all new technologies, that is, hoping it would work, trusting it was a bona fide, proven and effective treatment, worrying if it was safe. At the time I started treatment in May 2010, TMS had only been FDA cleared eighteen months earlier. There was no layperson literature available to educate me, and little to no anecdotal data regarding efficacy and/or risk. My decision to pursue TMS was based purely on crossed fingers and blind faith that the wizards behind the curtain would help me along the yellow brick road to achieving mental healthfulness.

As a patient who had given up on life altogether, I found myself struggling with that nagging FUD Factor and wondering, “How the heck is a four-second tapping on the outside of my head going to take all this hopelessness and sadness away?!” Swallowing a pill every morning is a tangible thing. You see it, you gulp it down with cold water, you know it’s going into your bloodstream and it will hopefully do the trick. TMS is far more discreet and mysterious. The fact that it’s based on invisible magnetic pulses automatically lends itself to the realm of magic in a patient’s mind. However, it may be invisible and non-invasive—but science proves it works. And my own full remission from depression with TMS therapy is further proof.

Many people in life are not what they seem to be, either—family, friends, strangers, and casual passersby included. In the midst of my own crowded life, I realize how alone a depressed person can feel even when he or she may appear to be upbeat and happy. Just as I did, other people can magically disguise their true emotions and trick the world by hiding the hopelessness and isolation they feel. But undiagnosed, untreated depression is a dangerous illness that demands serious attention and a therapy that effectively dispels the all-consuming darkness.

I’ve come to accept that it’s people who make the magic in life happen. In my case, it is a union of brilliant scientists, doctors, health care professionals, family, and friends who have proven this scientifically, philosophically, spiritually, emotionally, and physically.

I’m thankful for the genius and perseverance of the many Emory scientists, researchers, and administrators who have brought TMS to treatment resistant depressed patients such as myself. I’m not a scientist and never will be. I’m one of the stricken, an ostensibly “okay” kind of gal whose brain goes on the fritz every now and then, who gratefully accepted the Office of Technology Transfer Director, Todd Sherer’s invitation to come to Emory and work with Linda Kesselring on the “Put a Face On It” TMS project, and to meet Dr. Chip Epstein who invented the NeuroStar TMS® technology. While I had been an advocate for TMS for several years I didn’t know the whole story behind the development of this treatment, Emory’s role, nor what technology transfer was. The project was a wonderful experience for me and as a patient meeting one of the key developers behind the treatment that has saved my life—that’s pretty special.

TMS is no magical trick, it is the newest, safest, and least invasive alternative to traditional depression therapies that deserves the enthusiastic endorsement of the entire healthcare community for the sake of over 4.5 million patients who are suffering with treatment resistant major depressive disorder.

I am so grateful that I didn’t allow not knowing how TMS works to deter me from trying it six years ago. Things aren’t always what they seem, so it is in the hoping, trusting, and entertaining the mere possibility that something—visible or invisible—can be real and valuable enough to make life worth living.

I will never know how the magician works his illusions. He will never tell me. I must accept this as the unspoken law among the wizards of the world. But thanks to TMS, I’ve learned to accept the unseen, to trust that it is not for me to know how everything in life works, so that I can simply enjoy the show.

– Martha Rhodes

There are six videos on the Emory’s TMS technology listed below:

This piece is one in a series of four blogs related to Emory’s TMS technology. They look at the development and management of the technology, its impact, and this project from several points of view.