December 1, 1995, I took my son on his last trip to KHMH and December 7, 1995 he breathed his last breath on earth. Remembering still hurts; new memories have been created, happy ones and sad ones. However the questions that come to mind are “Have I/we learnt anything?” “Have I/we changed our attitudes, behaviours, conversations and choices?” “Have I/we shown more love, compassion, empathy or sympathy to others who are less fortunate than we are?”
My son died from an AIDS-related disease and no, I’m not embarrassed to speak out about it, and neither was he! I’m glad he taught me that before he died. Not given to public speaking I was timid, fearful and yes, even a bit embarrassed the first time I was asked to speak publicly. But I quickly whispered a prayer for wisdom and courage and realizing there were others hurting, afraid and lonely, once I opened my mouth, emotions took over and the words just flowed.
Other family members and friends are living with HIV/AIDS; some have died from AIDS related diseases. I have deliberately used the words “living with” because the idea that you will die quickly once you are HIV-positive, is history. That is one of my happy memories. No longer is the availability of medication for the rich only; education, assistance and care are available countrywide. Discrimination has decreased. Yes, there are still those who choose to remain ignorant and discriminate against the infected and affected. There are still those who are ashamed or afraid to let others know that they or their family members are infected with, or died from an HIV/AIDS-related disease. There are still those who abandoned or disowned their kin for fear that contact will cause them to contract the virus. There are those who will mark the utensils their infected member use. I have spoken to a now deceased friend who was thoroughly disinfected if he used any.
This, my friends, negatively affected him MORE THAN the illness. It caused him to just give up the will to live! No one goes to the shop to buy HIV/AIDS nor is it a curse nor punishment from God! Yes! It is in most cases a result of the choices we make or our careless behavior, but so are diabetes, hypertension and at times even the common cold. But what could God be punishing a 3-month old for with asthma or a 5-year-old with cancer? Could it be that the 3-month old kept his parents awake at nights when they were to go to work early the next day or the 5-year-old pinched her younger sibling? No. I’m not trying to be funny: I want us all to realize how ridiculous those thoughts are.
I recall sitting next to my younger sister at the clinic or hugging or kissing her whenever we met on several occasions prior to her death. One day at the clinic a friend called me aside and asked me, “You know da lady you di sit down close to, she got AIDS?” My proud reply was, “She’s my little sister and yes, I know what’s wrong with her but that does not make me love her any less than I did the first day I laid eyes on her.” Another person asked me if I was not afraid to hug her. She got a lecture. She learnt that day that 23 years ago I lived in the same house, nursed and cared for my son from HIV-positive through to full blown AIDS until death. I am still HIV-negative and so is my granddaughter who lived with us throughout the time. So much so she has been the primary caregiver to family and friends who have been or are infected and affected therefrom.
At present, I have a son and his wife who are living with me. They are both HIV-positive, employed, and have publicly revealed their status. When they built their house in the yard, someone made the comment that I will soon have an HIV hospital instead of a regular family house. I did not dignify that with an answer. My son’s wife has been cursed, insulted, reduced to tears. She didn’t know, but I cried for her too. She has her very low days emotionally, and there were days I thought she was going crazy. But through it all, we love her. She makes us laugh. Their lives are no different from yours. One of the things I admire about her is that no matter when she is called to take care of a sick or dying patient, and no matter who it is, she goes and gives her all to make that person comfortable. I remembered when my sister wasn’t answering her phone: she went to her home to check on her. My sister was not doing well. She came home and arranged with my granddaughter for them to go the following day and clean up. Thanks, Lyds.
One of my sad thoughts has been the inability to realize my dreams of opening a hospice or a halfway home for those who were ostracized or just have no one to care for them. But, we have progressed within the past 20 years. There are now organizations that often help with groceries; there are free clinics with extremely caring doctors and nurses who tend to the needs of the sick and give attention and free medicine. Our tendency to discriminate has been greatly reduced and education has increased. We have come a long way; however, we have a long way to go. We need to share our experiences. Don’t be afraid to get involved, to care, to love. Don’t let the hardships, emotional and physical pain, insults and discrimination our loved ones suffered, be in vain. We have learnt a lot from their lives and our experiences. Use this knowledge; let it be a starting point and means of teaching and making a difference in the lives of others.
An affected family member told me she would rather let sleeping dogs lie than to speak out. She was not prepared to deal with the ignorance and shame. The definition of ignorance is lack of knowledge and information. How then will we eradicate the ignorance if we do not cast off the shame and share our knowledge and information? We all have to join in and continue the fight against this scourge that is crippling our nation.
DON’T JUST BE AN UNDERCOVER SYMPATHIZER: BE AN OPEN VOCAL AND ACTIVE EMPATHIZER!