Because of you...

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 I came home from college in May of 1988.  The doctors told my mother to get her affairs in order, which is code for, prepare to die. My mother contracted HIV in 1985 from a blood transfusion after surgery.  We knew she was HIV positive, but her health had been good for many years after her diagnosis...

In May 1988, when I returned home from school, I walked past the hazmat sign on her hospital room door and thought, my mother, who had always been a large woman, had the longest neck and fingers I’d ever seen.  She was now a “normal weight” for the first time since her teens, but looked so very frail to me.  

During the year that followed, my father had been asked to leave his ministerial position because his wife had AIDS and we all watched our mom’s health deteriorate, a lot.  My parents had never had a storybook relationship to begin with, but my mother’s illness had taken a real toll on them both.  She left him and took my 10 year old sister and I stayed home, with dad, and worked.  

I traveled from Jacksonville, FL to St. Petersburg, FL most weekends during that year to visit my mom.  The last weekend I saw her we watched Columbo, ate pizza in her hospital room, and I begged her not to give up.  In my dramatic 24 year old way, I remember saying, “Get up and live, or give up and die” to her that evening. She attempted to get out of her hospital bed later that night, but failed miserably due to AZT induced atrophy of the muscles in her legs.  I fussed at her for hurting herself as she bled a little where she’d cut her leg on the bed before falling to the floor.  She responded, “I want you to know that I am trying.  I am not giving up.”

The next day I was back in Jacksonville when my mom’s sister in St. Petersburg called to tell me that mom wanted to come home from the hospital and that she seemed better than ever.  She wanted to swim in my aunt’s pool and work on getting her legs in walking shape again.  The hospital transported her home in an ambulance and a hospital bed was delivered to the house.  I was thrilled that she’d taken my words to heart.

Two days later on August 31, 1989, she was dead at the age of 45.  I miss her every day.  On important days I miss her more.  

On my 45th birthday, twenty years later, I had an epiphany. I realized that I too had a daughter who was 10 years old, just like she did at age 45.  Until that day, my mother’s death had been about my loss.   On January 21, 2009, I finally understood what my mother lost.  She lost her little girl, her young adult daughter and son.  She missed meeting the life partners of two of her children.  She missed knowing the four grandchildren born after her death.  She missed her own life and the ability to finish chasing love, pursuing interests and experiencing joy!!!!

I am 53 years old now.  I have been granted more years than my mother and feel the urgency of time.  My hope is that we are able to enhance, through medicine and self-care, the time and quality of life for those who have been infected by HIV/AIDS so that families can remain together for as long as possible and so that individuals can continue to experience the precious gift of life.  Please join me in celebrating the life of my mother, Linda Elaine Aldridge Phillips and the lives of all who have been infected and affected by this disease on World AIDS Day. 

-Jo DeLoSantos

Board Chair

Positive Wellness Alliance