So… last month I asked you guys to send me inspiring stories and I received quite a few stories. A huge THANK YOU to everyone who sent one in. I chose the story you are about to read because it is very close to one of the causes I support. More than that, it is a story showing the fight to stay alive. How do you take a hold of your life when faced with something (an illness) you have no control over? I did some editing but I kept the story true to its source who shall not be revealed. I have been back and forth with this person on what gift to get them…let’s just say we might have settled for a warm soda. See the thing about life is, it’s not guaranteed. This is why I am always blogging about doing good, being good, living in technicolour, loving relentlessly and not being afraid among other things. This anon person has been there for his friend, given his time, given his heart to love his friend through this terrible infection we would never wish on anyone. For such a heart, I recognise him by sharing his story, and I thank him for trusting me, and letting me share this with you all.
The story of RED.
Red, is a good friend of mine. At 15 years of age, he discovered that he was HIV positive the most disturbing way. On his way to school, he passed by his doctor early morning to get a note to exempt him from swimming owing to a knee problem. The doctor wrote him the note and off he went. Before he reached school he decided to open it and it read: “Red, is HIV positive and is under my care.” (Put yourself in his shoes. What would have been your reaction?)Anyhow, Red went on to finish high school and proceeded to university.
Fast forward 2011. Red, got sick really sick that he had to check into a hospital to get treatment. But after being admitted for 2 days on malaria drips, there was no sign of improvement. The doctor at the hospital is a good friend of mine and as I sat in his office he started telling me about the new developments in the fight against HIV/AIDS and all. I listened and started adding up the story. It was like he had a hidden message yet somehow I decrypted it. He told me that Red had HIV and needed more than what he was getting…He needed more treatment to keep him alive.
I want you to keep in mind that Red has been on ARV treatment right from primary school, and there is a downside to that. All that time he was taking the medicines, he had never been told what the drugs were really for, well not until the doctor’s note he read at 15. See, that’s when he realised what was really going on although it must have been hard to understand.
Back to 2011, I explained to Red why the doctor thought he was getting better with the treatment he had gotten over the past two days on the drips. He too had a great feeling about that particular treatment.
Red checked out of hospital and went to see his doctor. A well known HIV researcher with worldwide acclamation. The doctor ordered urgent blood tests to check his Viral Loads and CD4 counts plus a blood culture. When the results came through, the doctor said that they were the most staggering numbers he had seen since 1991. He was admitted immediately and had some counselling done too. (well, get in his head.)
I did not know what to think of or do next. I had seen him in pain before and all this made me realise how the disease could take over your body, your whole being really. Before getting admitted he had been taking probably the most expensive painkillers and antibiotics out there. But you could see how uncomfortable he was. No sleeping, no appetites, weight loss, skin was loose…you name it. Basically this is where you say, S**T JUST GOT REAL! He had less than 2 months to live.
Here’s what happened. Red not knowing what drugs he was taking, wasn’t really serious on taking them appropriately. Every time he got asked whether he was taking the drugs, he said “yes” and it was believed. Even after discovering it at 15, he went on to have a “shady” way of taking the drug. You know how you have a cold and when you get the meds and prescription written 1×2 or 2×3 or whatever they write and then you go ahead and give yourself a time frame? Say for 5 days? And on the 3rd day you feel better and decide to call the medicines off? That’s essentially what was going on. He had been given prescriptions but he thought to himself, ‘you know what? why not take them today, and the next, skip some days and maybe take some the following week’ he would even go months without taking his pills.
Red met with the counsellor who asked him to explain what was really going on. (You know shrink talk). The counsellor discovered that Red was not the happiest guy out there. He had been angry for a long time and by long time I mean from the time he made the discovery (at 15), he was angry at not being told, at how the truth was kept from him, who was/is to blame, what is next for him in life, was death around the corner? He was afraid, and he was angry that it was him, besides the drugs gave him some serious side effects.
He was admitted yet again and his drugs were changed to simpler ones with less side effects.
A month in the ward had gone by and he had a test to check his blood again. Progress!!!!!!!! I couldn’t have been any happier.
I asked the doctor, ‘what’s the worst that can happen to him?’ He answered, ‘death, but he has just cheated it.’ I went in to see Red and he wasn’t really happy but after seeing progress with the treatment, he was starting to cheer up. Personally, I live by this statement, “The will to live is stronger than anything else”.
Fast forward 2013(YES, 2013!!!!!!!). Red did another check to see how much progress he had made. There was something wrong again. The number that had dipped almost 70% was growing again.
Once again, I was concerned so I went and asked the doctor what was REALLY going on. The doctor told me that Red was not taking his pills. I think Red is not to blame for that back tracking. Basically, essential information had been left out, he was not told: 1) why it is necessary to take the drug. 2) why should it be taken on time. 3) what are the consequences of failing to take the drug.
I too studied the numbers with the doctor and asked him what REALLY happens if he were to miss one dose? His answer just confirmed all my fears…there’s only one way to end this story with HIV/AIDS. Yes, many people have gone on to live longer lives with the infection but also many people have gone before their time.
The doctor understood that he was at fault for not laying everything out on the table.
Ironically, I read your blog asking for a story while I was seated at the hospital with him.
Well, long story cut short, we are not yet at the magic numbers, but with the WILL, we will hit the jackpot.
I know at some point we all have to leave the earth, but the only difference is, with HIV/AIDS you are more aware of what might end your life. I pray that Red will feel better soon and overcome the fears, I can’t begin to imagine what he must be going through. Sometimes there are things that we will never understand this side of eternity.