Saturday, December 1, 2018

Bohemian Rhapsody

Yesterday Ian and I went to see the movie “Bohemian Rhapsody”, which just opened at the theater in a town called Nelspruit, South Africa, a full month after it opened in the US.  I couldn’t wait to see the movie and so we made the trek to see it and do some shopping.

Queen has always been my favorite band, and I spent my younger years buying every album, singing every song, knowing every lyric.  Freddie Mercury was a “Rock-Idol” to me, and Brian May his genius side-kick. I recall taking my small (and very new/hip) cassette player to our local hockey arena in Matheson, Ontario and when our boys won the last game of the season I grabbed the microphone from the announcer and held it up to my cassette player and played “We are the Champions” as loud as I could get it, until they managed to get the microphone away from me J.

As I sat in the theater, I felt as though I was meeting one of my musical heroes in person, and I got to know him well as the story unfolded.  At one point, he tells his wife (the true love of his life) that he thinks he is bi-sexual.  It’s a turning point in the movie as she pulls away from him and he soars in to the rock-world stratosphere of drugs, sex and, of course, rock’n’roll. 

My tears started to fall shortly thereafter as Freddie’s loneliness and desire to be loved was revealed scene by scene to the audience.  He wanted a friend. He needed a friend. He needed to be loved. But friendship and love and acceptance were not easy for him because of his own insecurities. Isn’t that true for many of us?

So here is some irony that I saw yesterday, and I have been trying to figure it out in my head so that I could put it in words.

Queen was one of the bands that performed at “LIVE AID” in 1985, raising awareness and money to help the starving children of Africa.  Freddie knew that he had AIDS at that time and was uncertain of his ability to perform and sing well that day. But he was singing to help children in Africa.   At that time, pediatric AIDS was unknown in Africa, but starvation was rampant.

But there was a moment before Freddie went to Wembly Stadium for that performance that he went to visit his parents.   He introduced them to his friend Jim, they had a cup of tea and then I thought for sure he was going to tell them that he had AIDS. I started to sob. I couldn’t bear to see their response because I was certain of their judgement and disappointment. In 1985 AIDS was a death sentence with no hope in sight, and the stigma that surrounded it was suffocating.  He needed to be loved and he needed to be accepted. But in the end, he didn't tell them.

I couldn’t stop sobbing in the theater. What was wrong with me, I thought?  And then it hit me. Ian and I have 18 children (under the age of 8-years) who are HIV positive (untreated HIV turns in to AIDS). Some arrived with full blown AIDS, just like Freddie Mercury had when he died.  All of our HIV+ children are on life-saving medication that wasn’t around back in the 80’s.  But there is still no cure for them. And Ian and I are the ones who have to sit our childrne down and tell them they are HIV positive, not the other way around.

The Baylor Pediatric AIDS clinics in eSwatini have been our partners for many years on this journey, and they are helping us navigate through a fairly new phenomenon called “pediatric AIDS”.  New things are being learned, new drug cocktails tried, new treatment protocols implemented, all to try to keep our children alive and help them thrive.  We have been told that by the time our children are 8-years-old we need to tell them that they are HIV positive and explain some of what that means. By the age of ten, we have to tell them everything – how they got it, that there is no cure, that they must take their medication twice a day for the rest of their lives, how it is transmitted etc.

We have buried TWO children at Project Canaan that succumbed to and HIV related illness and it is an awful death. I have watched two of our children die in front of my eyes after our team tried for many months to “love them back to life”, but just love wasn’t enough for them.

But those two children, Solomon (17-months-old) and Megan (23-months-old), died with dignity, surrounded by people who loved them, respected them and would have done anything to keep them alive. They were buried on Project Canaan and I visit their graves from time to time to remind myself how precious life is.


The stigma that surrounded HIV/AIDS in the 1980’s is still around today.  We still live with that same stigma in Africa every day and NO ONE wants to talk about their HIV status.  NO ONE wants to share their pain, their suffering, their heartache and put the “HIV/AIDS” label on it.  

Daily we see our staff go off “sick” with an unknown illness, or worse, the dreaded Tuberculosis, which is called “AIDS best friend – and killer”. Some come back to work, some don’t, and we are simply notified of their death. 

December 1st WORLD AIDS Day. That is today, and that is what today’s blog is about.  Just after Ian and I married 27 years ago, Freddie Mercury died. He never did tell his family that he had AIDS nor did he share his sexuality with them. But he was and continues to be a legend, not defined by his illness or his sexuality, but rather by his talent and genius. 


We do not share with people which of our 18 children are HIV+, but it won’t be a secret for long at Project Canaan because they all get their medication twice a day at 7AM and 7PM, and they all go to town to the clinic once a month. What we will do, is show unconditional love and acceptance, and lead our children and community to a place of love and acceptance too.

Jesus said, “Love one another”, and that is what we are all trying to do.

Live from Nelspruit … love one another.

Janine

2 comments:

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  2. Janine and Ian - you are an inspiration to thousands of people. Your work today in Africa will have a lasting impact for many generations to come for the people of eSwatini and around the world. I’ve told you this before, you are the Rockstars. Thanks for sharing this Janine.

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