SCDAA Mourns Hertz Nazaire (1973-2021)
‘It is with heavy hearts that we share the passing of Hertz Nazaire who passed away October 29 2021 at the age of 48. Hertz was a renowned artist and author who used his painting skills to raise awareness for sickle cell disease. He was also well-known for his SCD advocacy work and was a published author of an adult coloring book series titled ‘Finding Your Colors’ that he created as art therapy for stress.
At the young age of nine, Hertz began painting in NYC where he lived with his mother after immigrating from Port-au-Prince, Haiti. He studied art at the The Art Institute of Fort Lauderdale and University of Bridgeport. He later moved to Bridgeport, Connecticut to focus on his art and spreading his message.
‘We are deeply saddened to hear of the passing of Hertz Nazaire who touched so many lives with his art depicting the pain and sorrow of living with sickle cell disease and will miss his quiet but impactful advocacy,’ says Beverley Francis-Gibson, SCDAA president and CEO. ‘This is a huge loss for the SCD community.’
The Sickle Cell Disease Association of America mourns the loss of Hertz Nazaire and will hold his family in our hearts.’
PAINts From The Canvas Of PAIN
– Sickle Cell News Jan-March 2014
By Doyin Ojumu
Hertz Nazaire finds it difficult to hold down a job. It’s either he gets fired from one or he lets go by himself. At a point in his life, while in Art School, he worked three jobs to pay school fees, rent and meet other incidentals. The strain of school and multiple jobs became unbearable. His broke down, dropped out of school and became homeless.
Depression set in, and then aggravated illness.
In elementary school, his mates mocked him for his name, Hertz, which sounded like Hurts –what a coincidence that he was always complaining of Pain! His mother had given him a German name, which means Heart. Naz puts his Heart, though he Hurts, into all he does.
Hertz never knew his father. Trust the typical lecher, his father wanted the fun but not the responsibility. He demanded that the pregnancy be terminated. When his girlfriend insisted on having her baby, he simply walked out. He was never heard from again. The baby he fled from was diagnosed with sickle cell anaemia at six months in April 1974.
‘I’m glad my mum decided to keep her baby,’ Naz tells Sickle Cell News, ‘Despite the challenge of sickle cell, I find great joy in being alive.’
Through the ups and downs of sickle cell, in hospital or at home, his mom took love self-sacrificing care. When he turned 9, she passed away, leaving her son in the care of relations who had no time for a frequently ill child.
‘Despite the challenge of sickle cell, I find great joy in being alive.’
INTERVIEW WITH HERTZ NAZAIRE
– from SICKLE CELL NEWS vol6 no1 Jan-March 2014
‘I became a PAINter because I was given the gift of PAIN’
Hertz Nazaire speaks with Fatima Garba Mohammed
Tell me, who is Hertz Nazaire?
Hertz is the name my mother gave me. It means Heart in German. I don’t like people calling me Hertz because the name sounds much like Hurts. In English, when in pain you say IT HURTS. Classmates made fun of me for that name.
I prefer to be called Naz. Nazaire was my mother’s family name.
You are still single at 40 …
I have been close to getting married a few times. Losing one job after another due to time spent in hospitals really affected me. Being able to support a family is very important when thinking about getting married. Most women will not go for a man who does not have a steady income.
I was engaged at the age of 31. I was much in love. She did not have SCD or the trait. We considered it was safe (ok) to marry, but her family kicked against the idea. Her uncle, a doctor in Haiti, warned her mother to warn my fiancée that if she marries this man, he will die on her soon. It became a very difficult relationship after that.
Would it have been unsafe to marry if she was with sickle cell anaemia or sickle cell trait?
I do understand the logic behind the awareness and the get tested message flying around. I fear having a child with my Pain because I do not know how well they will cope. It is disturbing to think that someone would want to have a child to suffer this kind of pain.
For me, I wouldn’t discriminate against or reject any potential partner with or without sickle cell disease or trait. If I was worried that a partner could produce a child with sickle cell, I would simply go for a vasectomy. I had long discussed this option with my doctor.
Why did you choose to be an artist? How have you managed to cope in the art world?
I became a painter because I was given no choice. I was given a gift. That gift was PAIN. You can PAINt very powerful things if you can feel PAIN.
Nothing in my work without Pain. Even when my work has nothing to do with sickle cell, pain is always in my paintings.
The art world is a very competitive place. Success in that space is not based on talent or message – it is based on who you know and how much money you can spend to market yourself. Living with pain has not allowed any room for me to have such ambitions as being famous. I do not have the energy to play the games you need to play to become famous.
With sickle cell my life was not spent with the goals of working hard to obtain wealth and possessions. I wish I had the energy to compete with those who do not suffer from this pain. Having to pause or be away from your work for weeks at a time does hinder your progress.
With sickle cell in your life you have to try harder at everything you do. You never know when or how long you will need to be away or leave something unfinished.
I have not cured sickle cell with my paintings. They were only my personal screams of frustration.
Hertz Nazaire
You have been on hospital admission a few times …
A few times? I had a 3-year period of life when I spent 10 months out of 12 in hospital for pain. Granted I am doing better these days but the damage has been done.
There have been too many sickle cell episodes in my life. I wish I could forget some of them. I am still haunted by crises nights I never wish to remember. I do not wish to remember the many times I had to fight to breathe or had tubes stuck in me to save my life. I do not wish to remember these things.
You can survive something and still remain traumatized by it.
An incident of embolism nearly cost you your life …
There was a point in my life when I was working three jobs to pay for college. The stress of it made me sick often. I lost one job after the other and dropped out of school. With no money to pay rent, I became homeless. I became severely ill.
At the hospital, while a nurse was changing the bag of my IV, some air got into the tube. My heart stopped and I lost consciousness. I was revived, then I fainted again. A few days later – during the same hospital stay – I was blind for a few days. My vision slowly returned but not completely. I have blind spots that cover my focus with a blur. This makes it very difficult to paint or draw on the same level of skill I once had.
You’ve been on monthly blood transfusion for many years …
Yes, I have exchange blood transfusions by apheresis every month. The apheresis machine conducts blood exchange. For each fresh bag of blood the clinicians put in, they take out the same amount of my blood. So my sickle cell blood comes out and regular blood goes in until I have a good level where sickle cell crises becomes rare. This machine has been around since the 1970s. It works well for me. I do not have any iron overload issues.
I am still haunted by crises nights I never wish to remember. I do not wish to remember the many times I had to fight to breathe or had tubes stuck in me to save my life. I do not wish to remember these things.
At a time you were homeless and lonely – a vagrant on the streets of a wealthy nation …
Do you know what it is like to walk the streets of an American city late at night with no home to go to, no place to sleep? The cold night air, the fear and anxiety spawn aches in your joints. You hear footsteps behind you, sounds in the dark. Your mind is terrified, dreaming up all sorts of scary things that happen only in movies. This is one of the many challenges you can face when you have a chronic condition that keeps you from finding and holding down a job.
You must feel proud to have won accolade from the SCDAA for your artistic achievement and SCD advocacy …
I wish I had not lost my mother at a young age – maybe she would have been proud to see that others think something I did is deserving of honour.
I feel that I have not done enough to deserve that honour. That series of paintings is what life with sickle cell pain feels like to me. The art has been used by the SCD community worldwide.
I feel honoured but that does not make me more deserving of honour than others who suffer in silence. I have not cured sickle cell with my paintings. They were only my personal screams of frustration.
What turned you into an SCD activist in the first place?
It was one of those unforgettable crises episodes. The one that ignited my advocacy was the crisis in which, after getting to hospital seeking help for severe pain, I was kicked out. The doctors simply did not believe my pain was real.
From that moment I decided to speak out, to shout at the rooftop what SCD is all about, to share my experience. I went home and began putting my frustrations on canvas.
Pain can wear you down over time. It can break your spirit, break your faith. It is a challenge that feels like a curse.
– Hertz Nazaire
What lessons have you learnt living with sickle cell?
I have been burnt out for many years trying to survive being hopeless and homeless, trying to cope with deep depression, trying to understand where my life is going. Sickle cell means that life comes with an extra set of challenges that will either make you stronger or break your will.
Pain can wear you down over time. It can break your spirit, break your faith. It is a challenge that feels like a curse.
But pain can also be a blessing. It can make you a better person. Knowing what pain is like, you find you do not wish anyone to suffer. You try to help others keep away from painful conditions.
Without SCD, I would have grown to become a different man than I am today.
- From SICKLE CELL NEWS vol 6 no 1 January-March 2014
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