30 Mar Despite Medical Complications, Ayman Barbaresco Is Grabbing Life By The Balls
Ayman Barbaresco didn’t have a typical childhood. From birth he has been battling a number of medical complications including brain tumours and a genetic disorder called Neurofibromatosis, which sees tumours grow in the nervous system.
Neurofibromaosis has no known prevention or cure, and some sufferers live their life hiding away – but for Ayman, that wasn’t an option.
“A lot of people don’t understand what it is like, they’re wrapped up in their own little bubbles and not looking at the bigger picture,” Ayman says. “I don’t have it easy, but there are a lot more people worse off than me and I always remember that.”
It may sound cliché, but he is a man who grabs life by balls and was happy to share his story with us when we approached him, because everyone needs a reminder to look at the world from a different perspective.
“Due to my neurological disorder and with the brain tumours, it’s been a forever battle,” he tells SameSame. “I had my first brain tumour at age three, which was cancerous and inoperable. And they used chemotherapy and radiotherapy to battle it.”
Now living in Melbourne, Ayman grew up in Northern NSW and admits that living in a regional town for most of his life was a challenge, not only because of his medical condition, but because of the lack of access to services and organisations when he was coming out. This, he says, is why he has continued to volunteer for a variety of support organisations over the years. He knows too well what this isolation can feel like.
“My second brain tumour came on four years ago, that was benign and operable, which is the better one to have if you need to have a brain tumour,” he laughs. But recently he has started to have symptoms and at 28 years old he has been told that the tumours are back and at this stage in his life this takes on a whole new meaning.
“Given how well I bounced back last time they are not too concerned about my most recent tumour which has grown at this stage, but, what they are more concerned about is the longevity of my life. The tumours are benign, but they want to make sure that I can live a quality life rather than just the quantity of years.”
It’s not something other gay men in their twenties really think about, but for Ayman, this is his everyday life. Unfortunately, feeling different isn’t new experience for Ayman, and is something he shares his experiences of on his blog.
“On one side of my mind I’m reminded that my tumour is growing as I start to get headaches, it’s not something that I can get rid of, but on the other side I want to enjoy life and not have to deal with the side effects, which are a really big thing. And you’re in limbo, you don’t know what to do.”
Having to deal with the reality of what treatment meant now that he is an adult living away from his family, Ayman recently started a GoFundMe page asking for support from those that could is dealing with the financial reality of ongoing medical treatment, something that he wasn’t that comfortable with at first.
“It felt very weird and I felt really bad asking for money, even though it was for medical stuff. But I spoke to some close friends who reminded me I do a lot in the community and that it can’t hurt to just put it out there.”
At last count people had donated over 4 and a half thousand dollars to help support Ayman’s’ medical requirements.
“It’s overwhelming, seeing the updates come through on my phone and it is nice to get people giving in support that way. Asking for help is not just something that we forget to do, but something we really have trouble doing.”
“We feel bad asking for help or we don’t want to be seen as vulnerable. That’s something a lot of us feel as we go through life; or after we come out of the closet or deal with emotional abuse or our body issues, but they are another story. We deal with so much vulnerability every day and I had to remind myself that I need this now, I need this support to pay for my medical bills that is going to be ongoing.”
It’s a brave thing to admit you need help, and the worst that can happen is that people do not respond. But when people see a person that needs support, they usually do what they can to help.
“In the last month and a half, I’ve had a dull ache in the base of the skull and have the same symptoms of headaches that I had 4 years ago and that’s scary. I thought ‘here we go again’, but I’m more worried and concerned and nervous this time because I’m not near my family. I have close friends but that’s not the same.”
“The doctors have told me that they don’t want to operate, so I am playing a game of limbo, and waiting to see if my side effects kick in. I just wait until I have balance issues or facial deformities or breathing issues and then its go time. Until that happens I live my life and wait.”
“I’ve lived an amazing 28 years and this is the next big challenge I have to face, so let’s just do it,” Ayman says with a laugh. “All I can do is giggle as there are others that are worse off than myself.”
“I am always thankful that I am breathing by myself and don’t rely on a machine or anyone to keep me alive, I’m living a life that I never thought I would and I’m not stopping now.”