Saturday, June 2, 2012

Where Are They Now? 

In 1999 Kathleen and David Tyson made national headlines when they fought the state of Oregon for custody of their son, Felix, after Kathleen told doctors she intended to breastfeed him even though she was HIV+. (full story). She and David were charged with “intent to harm” and lost legal custody of Felix. 

I first met Kathleen just days before she and her husband, David, were facing a court hearing that would decide the fate of baby Felix. Despite their unimaginable anxiety during that time, they agreed to be my first interview subjects for This Child of Mine.

They told me how shocked and devastated they had been upon discovering that Kathleen was HIV+.  How they had spent months doing research, talking to doctors, specialists, and other parents in their situation, as they tried to navigate their way through the ordeal. But as David later recalled, “they had us over a barrel: they had [legal] custody of our son.” 

The Tysons lost the case. Although they were allowed to keep Felix at home, the state of Oregon retained legal custody, and took charge of all medical decisions for him. 

That was thirteen years ago. 

Today, Kathleen and David live in the same small city of Eugene, Oregon. The state restored legal custody of Felix to them in 2001. Felix is HIV-negative, as is his twenty-three year old sister, Faye, and David, his father. 

Although Kathleen continued to test positive for HIV, she decided years ago to “opt out of the system” altogether. HIV became sort of a distant, uncomfortable memory of those early, frightening days after her diagnosis –literally in another century – that just didn’t have place in their life anymore. 

Until the the summer of 2010. That’s when things got a little crazy. 

David and Kathleen were going through a difficult time, not unlike many of their neighbors. David, an electrician, was out of work. Kathleen was working full time at several jobs, and going to school to become a physical therapist assistant. Mortgage bills stacked up and they were in danger of losing their home. 

The stress began to take a physical toll on Kathleen. She felt tired a lot. She got a cold that she couldn’t shake. But knowing that she had to keep it together for her family, she kept going. Finally, under the weight of it all, Kathleen says, she just “crashed”.  

Kathleen went to her long-time family doctor who could find nothing clinically wrong with her, and referred her to an infectious diseases clinic. After being admitted into the hospital,  Kathleen was diagnosed with Pneumocystis Carinii Pneumonia (PCP), and  Candidiasis: two AIDS-defining illnesses. She told me, "I remember feeling that for the first time in my life I was not going to be able to pull out of this all by myself.” 

Kathleen saw an HIV specialist and told him her story of life with – and without – HIV. She nervously told him about the choices she had made for Felix and herself, and was relieved when he didn’t seem shocked or outraged.  After they talked, the doctor ran some tests, which revealed a high viral load. He told her finally, that despite how long she had gone without incident: 

You are now and AIDS patient.” 

For an entire decade Kathleen had lived simultaneously with the knowledge that she was HIV+, and the belief that HIV was irrelevant to her life.  She had been raising her children, running local marathons, paying bills, working, eating, sleeping - not waiting expectantly, courageously, for the hammer to drop. And then, that day in the doctor’s office, it did. Now Kathleen needed to make some decisions.

To her surprise the doctor did not bring up antiretroviral drugs again for two months. Instead he treated her clinical conditions and gave her time to recover, which she did. At that point, he told her it was time to seriously consider HIV treatment. "I decided to trust him on this for a little while because he had shepherded me through this crisis.”  

 It was a difficult adjustment. At first, the drugs made her feel sick all day. Her doctor suggested she take them at bedtime, which made a big difference. But she feels dizzy at night and sleep does not come easily. She says she has learned to cope with it. 

 "I don't really know if I'm making the right decision about the medication. That is tough to know. But I do know that in the last year and a half, I've gotten back to a more vibrant state of health. I can't know exactly what has contributed to that, but I'm pretty sure it is the dedication to yoga which has rebuilt my strength." 

Ideally, Kathleen would like to get off of the meds but she is concerned that her doctor might refuse to see her if she doesn’t stick to the regimen. So she takes them every day, continues with yoga and has made "a huge commitment to kale and brown rice".

Back in 2005, during an interview, I asked Kathleen if she was worried about being HIV+.  She answered,  “I’m not the kind of person that thinks that bad things are going to happen around every corner. I have a positive attitude, things are good.”  

That always stuck with me – it was not false bravado. It was an genuine outlook on life that most only aspire to, myself included.

 So I asked her about it while we were on the phone a few weeks ago.  Kathleen chuckled a little sadly. “I don’t know if that’s how I am anymore.  I never really had to confront [being HIV+] before because I never got sick. Now I don’t quite know what to think.” 

Does this mean Kathleen now sees her past decisions about HIV as a mistake? 

Kathleen spent some time thinking about that question and emailed her response a few days later. I'm including it here, mostly in it's entirety, because I think that there are many folks out there, like Kathleen, who have come through their experiences with HIV and found themselves down the road -still on the road - with even more questions than answers. I don't want to mince her words. Here's what she wrote:

"I've been thinking about your questions this week, and I think what I can say about it is that no, I would not have changed what I did in the past regarding this. I think we made the right decisions at the time with the information we were able to access. That information would include everything we could find from a dissident point of view, as well as information from the CDC website, National Institutes of Health websites, and published papers on various studies that were done. 

 So no, I don't think we made mistakes, and even now after having had an AIDS diagnosis and recovering from that, and out-living that diagnosis I feel like the only thing to do is to carry on with trying to live the best I can. The AIDS diagnosis was just a big kick in the seat for me, really, a message to get on with living better. So things like diet, stress, how I spend my time, those things all got right up in my face. There is only so much time in life to try and get it right."

For more about the story of Kathleen and other families who have had to make difficult decisions about HIV treatment for themselves and their families,  order This Child of Mine today. 

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  1. My question to Kathleen is what would make the doctor diagnose her with PCP and as a self fulfilling prophecy an "AIDS Diagnosis". The fact that she tested pozitive and her story not a secret, closely affiliated with Alive & Well.

    I hope that the Tyson's are doing well because I remember in the movie The Other Side of AIDS, tears flow down my face when I saw baby Felix being forced the lethal dose of AZT, a drug I endured hellishly for six years.

    PCP? Everybody has it.

    Tomás Brewster
    Fort Lauderdale Florida

  2. Tomas,
    I don't see it as a self-fulfilling prophecy. I understand that there are many questions in the AIDS dissident community but sometimes it seems that they categorically deny the possibility of any other point of view. To me this ironic since it is exactly what they accuse the "mainstreamers" of doing.

    When I first started the documentary, I believed it was a simple case of medical freedom, civil rights- the abuse of the AIDS Establishment. But then so many of my interview subjects died, I had to question. I think there are many shades of gray. I think people are physiologically different from one another and therefore respond differently to illness, virus, medications, life. It's hard to get black and white absolutes when human physiology is mostly gray. So it's complicated.

    At the end of the day, Kathleen only became well, and remained well, after visiting this doctor. It's understandable that she would continue to put her trust in him, don't you think?