NEWS

Our Problem

By Sharon Egiebor

Dallas area resident Shirley Smith’s 30-year-old-son Darrell is mentally disabled and has AIDS. Darrell, who has the mind of a 14-year-old, is unwilling to take his antiretroviral medication.

Smith, a substitute teacher who has a bachelor’s degree in social work, was a guest speaker recently at an HIV/AIDS Awareness Campaign at Tommie Allen Recreation Center sponsored by Reach Out Lift Up Family Ministry and Dona Gassaway Mitchell. Smith, 50, said she decided to go public with her story to help people understand that HIV/AIDS affects more than just the patient. Following is her story as told to BlackAIDS.org project manager Sharon Egiebor.

Living with an AIDS patient is not a pretty picture. It is really ugly.

My neighbors don’t know. My friends don’t know. Our church members don’t know what I am praying for when I bow my head.

Most people are aware Darrell has cancer, but we didn’t tell them he had AIDS. The cancer is spreading throughout his body, but he cannot take chemotherapy because his T-cells are too low.

Some people think we’re being negligent by not allowing him to take the chemotherapy. Cancer doesn’t scare people like AIDS does. My daughter has been dating a guy for two years and he doesn’t know.

I told some of my siblings the last time Darrell was in the hospital and asked them to pray for him. People who do know don’t visit us.

The beginning

My mother died when I was 8 years old. When it came time for me to attend college, I had to work and save money to go. I was 19 years old when I enrolled in college.

In that first semester, I accepted a date with a young man that I barely knew. He took me to an off-campus apartment and raped me.

I didn’t tell anyone. A few weeks later, I had run out of money and decided to leave school. That’s when I discovered I was pregnant. I felt love for the child in my womb.

Growing up, Darrell and I were very close. He liked to play soccer and football, but he struggled in school with math.

Over the years, he seemed angry all the time. People kept telling me it was just a teenage phase, but I didn’t think so. A mother knows when there is something wrong with her child.

When he was 18 years old, Darrell smoked marijuana laced with embalming fluid and his behavior became more erratic.

He would wear headphones all day, pretending he was the radio disc jockey controlling the song plays on the radio. He was hearing voices and would wake me up at 2 a.m. and tell me to watch him on television.

The doctors diagnosed the bipolars in 2002. I believe he had it all along and that they were just noticing a progression of the illness. He also is schizophrenic.

In the middle of this, he had friends who did things. Once, he was in the car with a friend who was recently released from prison and on parole. The police stopped them. The other young man was carrying a gun. He gave the weapon to Darrell and told him to hold it.

Now Darrell has a felony record for weapon’s possession. I can’t put a convicted felon on my apartment lease, nor can he get into federal Section 8 housing. We live underground, where Darrell isn’t on the lease. My adult daughter and I share a bedroom and the bath. Darrell stays in the master suite, where he has more privacy. Darrell wears adult diapers because of the tumors in his rectum and he has a colostomy bag that has to be changed.

When a person has mental problems, they don’t think rational or normal. If they did, they wouldn’t be mental.

Darrell became a crack head and started doing things to get the drugs.

The diagnosis In 2003, I had taken Darrell to the doctor and across the way was the Dallas County Mobile Testing Unit. I had nothing but time on my hands, because his appointments would take forever. I got tested and when Darrell came out, I had him tested also. They told me within the hour that I was negative. They asked Darrell to come in and talk. I asked permission to go with him. They told him he was positive but that the he should visit the agency’s office on Stemmons Freeway to take another test. That test returned positive.

Now he has full blown AIDS and lesions and tumors throughout his body.

Nearly all of my time is spent taking care of him. I tried five years ago to put him in a residential facility. It costs nearly all of his Social Security payment to cover the bill.

They said they were providing three meals a day, counseling and transportation to and from doctor’s appointments.

They considered breakfast to be one of those 8 for a $1 package of Ramen noodles. Darrell was calling saying he was hungry all the time. I would carry him hamburgers. We eventually bought a refrigerator to put food in it. The staff said the other men would ask Darrell and he would give them all of his food.

I lost my summer job at a department store because I kept taking off to take care of Darrell. They tried not to fire me, but I knew they were forcing me out when they moved my duties from sales clerk to warehouse stocking, lifting heavy boxes. They had young college-age people working there, but me at 50-years-old was in the back lifting. I left.