We don’t really make a point of birthdays or remembrance of deaths in my family. But this week I remembered that September 12 would have been my baby brother Neil’s birthday. Then I had to figure out how old he would have been. Since he was born in 1969 he would have been turning 45.
Neil had Tuberous Sclerosis – which meant he had all sorts of tumours throughout his body – on his organs, in his brain, raised red rash on his face, etc. He only had one kidney that was still working and only at about 10% and they did MRIs every six months to monitor the brain tumours.
We had a couple of bad scares when he started to hemorrhage, passing blood on Boxing Day 1997 – they couldn’t do anything for him so they gave him narcotics and sent him home to wait. He came out of that. Then he started bleeding again around Christmas 1998 – this time there was a top surgeon visiting (we lived in Vancouver at the time) who operated by going in through Neil’s thigh and implanted little metal coils in the blood vessels that feed the bleeding kidney (it was the size of a football and all tumour, no longer a functioning kidney). The coils formed blockages which stopped the bleeding AND stopped feeding the tumours.
Due to seizures as a baby and toddler, before he was diagnosed and medication controlled the seizures, he suffered some brain damage – he functioned differently, I explain it to be like autism. He was brilliant if he was interested in something… but he never showed it to the doctors or psychologists who were assessing and testing his abilities. He was kept in kindergarten for three years – then he was just too big. So he was in special classes the rest of his school career (until he was almost 16.) His last year they let him sit in a corner and do his own thing because they said he was so far below the level of the rest of the special class they couldn’t spend time with him.
This was the kid who at the age of 4 could spell and pronounce all the dinosaur names and explain their physical traits to you. Who, later, read all the books on Greek Mythology we could find and knew all the gods and demigods names, relationships and powers AND could spell all the names. Who, at a restaurant could add up the bill, add the tax and tell you what you owed, all in his head. But he couldn’t figure out handling cash – no idea that he should wait for change. Wouldn’t use a microwave as he set fire to bacon once in it. He was a bit OCD – compulsive collector. Had a room just for him for his Transformer collection. He was a fantastic artist. He was physically strong up until the last year or so. And was a very hard worker.
He loved art, theatre and concerts, LOVED to travel and visit museums and historic sites.
He was a big, strong guy. Usually shaved bald. Pretty intimidating to strangers.
He came to make-up school with me and was my model – which meant I got twice the time in class (as I didn’t have to model for another student!) They made him get in our class picture at graduation.
He used to tell people he had four mothers – because he had three older sisters who spoiled him and/or bossed him around.
He collapsed one morning in February 2006 – his skin was yellowish. We called an ambulance… it was Friday morning. We called my sisters and uncle who was closest – and waiting until everyone who could come arrived. His organs were shutting down – the liver and kidneys were gone. And he was in a constant state of seizure. Life support was turned off on Sunday.
The funeral home packaged his ashes in vials so I’ve been scattering him around the world on our travels so he could continue to get to the places he was interested in.
Neil was my best model – always game for it…
Including my 2005 design that won Face Painter of the Year for me in 2005:
This is the last photo taken of Neil – taken at Christmas 2005. He has just opened the present from our sister, Shari, which was a complete collection of Transformer cartoons and books… he was thrilled. It is really hard to believe that it has been over eight years since he died.