I called my parents in North Carolina. I didn't really know what to expect. I was in a panic.
I have always been independent. I have always been on my own, done whatever I needed to do. I'm not the kind of person that calls home every day. All of a sudden, I was faced with something, for the first time in my life, that I felt kind of afraid and unequipped. I was thrown into a tailspin. So I reverted back to, "Mom-my!"
My birthday is the 31st of August. This was late September. I had just turned 38. Up until this diagnosis, my biggest panic was, oh, I'm approaching 40. Now, all of a sudden, I'm like, well, wait a minute. Will I even reach 40? All of a sudden now it was a goal and not something to be feared. I was like, wait a minute. I want to reach 40 now. Now I need to!
I called my mom and dad and I just cried to them. I said, "I don't know what to do. I don't know if I'm dying. I don't know what to do." They reassured me. My mom asked me if I had told my sisters, who all live in different states and countries. I said no, that they were the first people I called.
My mom said, "Can I call them? First, because it will help you. You won't have to keep saying all of this over and over and over again. But also because it will help me, because I need to say it over and over again. I need to process this. I need to get it into my head."
Your mother sounds amazing. Is she a therapist?
No, no. Just a really cool lady. So she said, "Can I call your sisters? Can I tell them? I need to ..." I think she needed to do what I was doing. I needed to call my family. I needed to get that reassurance. She needed that. She suddenly felt alone where she was, and she needed that reassurance. So she was like, "Can I call your sisters? Can I tell them? I need that bond. I need my daughters. I need my family. This is too much for me alone."
I said, "Yeah. Would you do that?" So one by one, she called my three sisters. Then, one by one, they called me. Since now they had been told, I didn't have to go through all that beginning, that, "Um, um, I have something to tell you."
They called, saying, "Mom just called. What can I do? What's going on? How are you?" Then I could just jump right into the emotional support.
Did you find that you got a lot of emotional support from them?
I did, and I still do. I get a lot of emotional support from my family. It took me quite a few years to tell cousins. My grandparents, I never told. They died not knowing. I couldn't do that.
Why didn't you tell them?
I guess I didn't want to disappoint them. I didn't want them to change what they -- not what they thought of me ... but I didn't want them to be afraid. I didn't want them to be afraid that I was going to die. I didn't want to disappoint them and change how they felt, and the relationship we had. I just couldn't deal with that.
After you told your family and your sisters found out, did you tell friends?
Yes. I told my closest childhood friends. I called them up, because they are in New York and in Florida -- the places I've lived, and where I grew up (in New York). So I called my childhood friends and I told them one by one. They were all very supportive. Then my friends out here ... I did a rather crazy thing.
First, my most intimate, closest friends: I, one by one, invited them to dinner. I would have them over for dinner at my house and I would cook a nice dinner, and we would sit down and talk. Then I would say, "I have something to tell you." And I told them. "I know you know that I have been very, very ill. Well, this is why. This is what it is."
Ironically, a dear couple that I invited over one night to disclose my AIDS diagnosis looked at me -- and I had known them, now, for five years -- looked at me and said, "Well, Shelley, then I guess it's time we disclose."
I said, "What are you talking about?"
They said, "We both have AIDS, also."
I did not know that. So, here we were. We had known each other. We were very close friends. Saw each other every week for five years. By my telling them that I had AIDS, they admitted that they both did, too.
It was weird. It was very weird. Because, now, they knew it for years and years. I had only found out for maybe a couple months.