My Journey
Lisa Johnson-Lett,
November 2022
Early Beginnings:
My journey began September 11, 1973 to a life intersected with substance use, domestic violence, and mental health living in one of the ghettos on the south side in a predominately black community. I was taken away from my parents and hospitalized at 14 months old due to child abuse and neglect. The doctors did not know if I would live. Some thought I would be blind while others thought I would never have children. Seems daunting does it not? My journey in the first beginnings of life helped pave the pathway to receive my HIV diagnosis.
Reflections:
I recall the early years of the 1980s. The first person known to be living with HIV in my family was a female cousin. How can this be when this is supposed to be a gay man disease or GRID, Gay Related Immune Deficiency? After she died, another cousin who was male succumbed to the disease and he shortly passed away. There are probably more members of my family but either it is just not shared information or maybe their statuses were unknown? I remember how AIDS used to look and how it made me feel. I did not like AIDS. It was a disgust to look at. All I knew is that I did not want it. I did not want to touch it. I did not want it to come my way. I remember Song Boy, who was a deacon at my church. He was also a distinguished member of the youth choir. That was until he got “ the plague”. It was not too long afterwards lesions became visible, his eyes began to bulge, and soon he too passed. I was just 8 years old. I lost 2 cousins and 1 choir member.
Milestones:
I have surpassed the stages of adolescence. I was adopted through kinship care. My paternal grandmother adopted and raised me. I moved from the southside to a nice, middle-class neighborhood, Queens Village. I went to a prestigious private school, St. Johns Prep and enlisted in the United States Army. I conceived my 1st child while touring Camp Casey, Dongducheon Korea.
Seroconversion & HIV Criminalization:
After moving back to state-side, I met up with my childhood boyfriend and at age 20, I received an HIV diagnosis. My seroconversions date August 12, 1995-that was the longest day of my life! I became a long-term non progressor while experiencing HIV criminalization in the armed forces after I conceived my 2nd child in 1996, after my HIV diagnosis. I had a military court martial because I endangered my unborn child. My child’s father was in the military as well, therefore having sex knowingly with HIV was destruction to military property. After my 2nd child was born, she was labeled a “special needs child.” The military daycare centers did not accept my child into their facilities because HIV was foreign and it could be in my child’s tears, urine, and/or feces and they did not want to jeopardize the school or other children in the facility.
Advocacy
Today I thrive because I found power in advocacy. I found a voice through womanhood and my founding sisters. I found a community which is my chosen family. I learned how to embrace HIV and not let HIV define who I am. I have lived experience as a subject matter expert. HIV has been living with me for over 27 years. I am involved with my healthcare team, I am a peer in my community and I serve on local, state, and national councils, boards, and community advisory/action boards. Today I am a national speaker and I travel to various places as a consultant with expert knowledge in HIV as a long-term survivor and a person aging with HIV.
