Gerry Nealon: Social Activist. Here Gerry is campaigning for sensible, sane and compassionate drug policies.

In Memory of Gerry Nealon

A couple of days after Gerry died last week I decided to write a memorial to this man who so quietly helped so many people.

At the time it seemed like it would be an easy enough thing to do but I soon realized that trying to condense a life of 62 years into a few lines, or even pages, is no easy task. Particularly when the fact was that I had only known Gerry for five years and only via email and Facebook. We had never sat down for a cup of tea or a beer or whatever, with time to chat and share on that level.

Yet, despite that limited form of communion, I felt very close to Gerry and his passing affected me deeply.

So here is my attempt at a memorial for Gerry Nealon

Meeting Gerry: A Smugglers Tale

Gerry Nealon and I first met by email back at the beginning of 2016. Gerry had Hep C and had heard about what I was doing, organizing the shipment of generic Hep C medication to people with Hep C, all around the world.

Gerry, like me, had caught Hep C through sharing needles during drug use and was feeling the effects of the virus in his system. At that time Ireland only offered Interferon based Hep C treatment.  Gerry had tried to cure his Hep C with Interferon through the Irish health system but had failed the treatment. He told me that the side effects of the Interferon had been horrific and probably caused more damage to his liver and general health than Hep C.

By 2015 the Hep C was really starting to bring him down so the prospect of effective treatment without side effects caught his attention and raised his hopes of finally getting rid of the Hep C virus.

At that time Ireland, like many countries in Europe, would not allow citizens to import generic Hep C medication for personal use. It was a policy the Irish government-enforced very strongly. Gerry had heard that I would do whatever it took to get people their meds so we worked out a way.

Because the UK had the opposite policy to Ireland in regards to importing medication we decided to send the meds via the UK. The UK allowed its citizens to import just about any medication for personal use. So Gerry arranged for his meds to be sent to a friend in Northern Ireland and he slipped across the border, picked up his generic Harvoni, and returned home.

That was the beginning of a long friendship.

As soon as he had his medication Gerry started helping other people in Ireland and people across all of Europe, particularly Eastern Europe, to access generic Hep C treatment.

But more importantly, Gerry became very active in various online Hep C forums, particularly on Facebook and particularly in the Facebook group I founded with Gitan and Alexander Macrae, called Hepatitis C Treatment Without Borders. He saw that the online forum as a great way to help people who had no other way of getting access to Hep C treatment or even good information about Hepatitis C.

When Hepatitis C Treatment w/o Borders was hijacked by Jacki Chan and I was blocked from the group that I co-founded, Gerry played an important “under-cover” in W/O Borders role to alert members to what had happened and he personally moved many hundreds of members across into my new Hep C group Hepatitis C Treatment Cure and Community. Gerry’s help in the early stages of my new group launched the group and ensured its growth

Gerry Nealon: Social Activist

Gerry is known in the Hep C world as a leading advocate for people with Hep C. He did a lot of online work helping people to access Hep C treatment and was always there for people needing information about Hepatitis C treatment options.  As I mentioned Gerry helped me set up the new Facebook group Hepatitis C Treatment, Cure, and Community and was on the Admin team from the beginning.

Gerry’s dedication to helping people was such that he basically stayed online and active in the group 24 hours a day, offering advice, support and guidance when it was needed and keeping things running smoothly. However because he took his role in the group so seriously it began to wear him down and after a couple of years, he gave up the formal Admin role and opted just to be a helpful group member.

Apart from his work with Hepatitis C Gerry was an advocate for many other social justice issues including the decriminalization of drug use.

Gerry Nealon’s early life

Gerry was born in Dublin 1959 on the 30th of May, into a good Irish family. He was the fourth child of eight. Gerry had two sisters and five brothers. His brother John was telling me that all the kids were born almost exactly a year apart.

The family was comfortable as their father was an advertising agency director. Gerry got the nickname “Taste”, because he was always hungry and he loved biting things. John went on to tell me that they were a happy family and always went away down the country for the summer holidays.

People who knew Gerry growing up, say that he was his own man and he wasn’t influenced by others around him.

When he was around 19 or 20 he got a local publican/ politician’s daughter pregnant. Her father thought he wasn’t good enough for his daughter (as I think he was working in McDonald’s at the time). Gerry followed this girl over to England where her dad sent her while she was pregnant to have the baby adopted. It was probably while he was in London that Gerry started smoking weed and getting into other drugs.

Gerry then went through most of his adult life going from job to job. He never stayed anywhere for a long time. He had become a stoner, as they called people then who liked to have a smoke. When he got back from London Gerry stayed in Dublin.

Gerry was always fighting for a good cause and it could be a different one every so often, but normally a very worthy cause.

You could never argue with him about said cause at the time because he would blow you out of the water with facts, figures and dates. He was very knowledgeable and was a great supporter of the old IRA, and republicanism in Ireland from 1916.

He was a great guy who took on a good deed and stuck with it. Gerry has another two grandchildren along with his treasured Holly who is Matt’s daughter. Then only last year Gerry discovered that he had another son in Australia called Brian, who also had a daughter who was called Erin. For reasons best known to herself, Brian’s mother never got in touch with Gerry to even say that she was pregnant. So in the last two years, Gerry suddenly had two sons and a daughter and three grandchildren who he sadly never got to meet.

He was only diagnosed with cancer around October or November last year.

Thin Lizzy, Joan Armatrading, The Beatles are all music that he loved growing up.

Gerry Nealon with his father in 1976. Gerry described this as him moving into his “hippy phase.”

Gerry with some of his mates in the late 1970’s

Here are some memories and stories about Gerry from people who knew him.

Mary Kay

One thing I’ve learned is just how many people Gerry kept personal contact with. Although it was through social media, he wrote many friends words of personal encouragement when needed and always asked folks to message him if they needed help or just a shoulder to lean on. His concern and care for so many people he never met and only knew through FB groups was just amazing. And then he had your back- always

Dianne

Greg Jefferys Gerry was so very supportive of people in the Hep C FB community, especially in the early stages about 5 years ago, when we were all hunting the generics to be cured. I will always remember how he would offer sound, informed advice and encouragement on a regular basis to all inflicted with “the dragon”…RIP Gerry. You’ll always be fondly remembered by me.. he was an integral part of my journey back to health

Carole

Hi Greg for Gerry’s memorial: When I first talked with Gerry on our HepC site I thought oh boy this guy is a real weirdo with the things he says, but I kept on talking with him and he turned out to be such a genuine, vulnerable person whom I quickly trusted and loved. He was still strange but to me he was a friend in my recovery

Noleen

 I would just like to add that Gerry made time to comfort, provide solace, empathise with others when they were in a fragile place. He was extraordinarily kind and could just be present with people when they needed someone.

Kerry

Gerry supported me a lot around the time I was looking into generic Hep c treatments, he held great counsel.

Mark Bitterling

Condolences to the family. Gerry Nealon you were an inspiration to me when I needed it the most.

Gerry Sutterby

Greg Jefferys All I can offer is that last year, I formally awarded Gerry the most prestigious & supreme Australian honour & title, of being a good cvnt, which he greatly appreciated & well deserved.

Angie Lewis

Greg Jefferys he was a lovely man always there if you needed a rant or a chat he was a total star xx

A FB Message from Gerry to myself not long after he was admitted to Hospital

Thanks for sending the lovely photos of your garden Greg. I haven’t been outside in 11 days, it must be beautiful there in Tasmania at this time of the year. I got a good sleep, considering.

There is always something happening in the ward – William Wilde Ward . I am here in this ward with 5 others. So just woke up to the doc talking to me about yesterday’s biopsy and the next step. I’ve another scan tomorrow, ECT I think.

All the procedures have me a bit confused. But they will inject a dye, and that will light up any areas in the body of concern. I’ve had to fight for everything.

I decided to quit smoking the day I entered the hospital, rather than beg a nurse to accompany me outside the hospital for a smoke every few hours. It was rougher than necessary, they prescribed me the weakest patch, 10 mg even though I’d been smoking 48 years!

After a week, I saw the smoking cessation officer, who put me up to 25 mg, much more tolerable. So I’ll benefit from that, and any other problems they find can be rectified. My son can get in and paint the flat, so when I eventually get home, it will be a fresh start.

I’ve never really recovered from the interferon + ribavirin treatment in 2007/08, with the after-effects of the meds, and the failed treatment. But my body was obviously getting bad effects from smoking and the growth on the lungs, and possibly the lacerations of the brain, on top of the damage interferon and Hep C did to my liver.

I’m feeling better already, able to sleep and then do more physio every day.

Before I came into hospital I wasn’t able to take 3 steps without falling since last Mon week.  It was frightening, getting harder and longer to pick myself up from the cold ground.

I lay on the ground sometimes for 30 minutes at times.

I finally called my son, and he was straight on to the Ambulance. It took 8 hours to get scanned, and into a private room before being checked for Covid. 2 days later, and it’s been all improvements since then.

Thanks to yourself and Pam for the support. It really means a lot to me.

And at least 150 members of the group have been in touch with me. That’s actually helpful in many ways. I couldn’t even spell properly for a few days, but replying to people made me get the brain in gear a lot quicker.

The group is amazing, people saying that I helped them and wanting to return the favour. Sometimes, I don’t even remember the name, but you have created a solid helpful group. I’ll soon be able to help out more, I feel a very strong bond within it. Sorry for the length of the text, I get interrupted by docs, and everyone waking up, so I forget how much I have written. Hope you are feeling well, and have a good night. Cheers mate.

Mar 12, 2021, 6:48 PM

Gerry sent March 12

So far ive been diavnosed with cancer of the lungs. This has spread to the brain, which they term as #4 cancer, untreatable. So im relying on Cannabis oil to cure me. Im getting bed baths every day, and its a nice place, but im not prepared to give up on living, which they seem expect!

Gerry sent March 2

Yes, i learned last year that i have a son 30 yo. In Australia. He also has a daughter. So i am even more fortunate than i thought

Gerry sent April 2

My son Brian and my grandaughter Erin who live in Western Australia.

In 2020, Gerry was thrilled to learn that he had another son and granddaughter living in Australia. We chatted about what a blessing it is to have children and grandchildren and Gerry was very excited about getting to know his son Brian and granddaughter Erin

Apr 2, 2021, 7:03 PM

Gerry sent April 2

Hi Greg, i know exactly how you felt, to live long enough to make an impression on the grandkids. We have the time now. Its all id ask for

Gerry with his granddaughter

Gerry sent April 2

Hi Greg Its difficult on a deep level. I have had to relinquish so much control over the simple action we take for granted. It takes so long when i drop anything from the bed that i cant reach, ringing the bell for a nurse could take half an hour. But the feeling is horrible. At the start, it was taking 6 hours for Methadone, because a doc has to sign for it. Overall, the room is great, food is good most of the time, although I haven’t been able to eat in 3/4 days. See doc this morning to see if we can swop tabs. Some vids will try to show you how loving she is.

Yes, i learned last year that i have a son 30 yo. In Australia. He also has a daughter. So i am even more fortunate than i thought

Haha! I sure had. One kid is 40,another 30,then we skip to this century. I will include Brians address in a while.

Cool. I have yet to meet this son. 2 kids found me in the last year, then this crap happened. It will take time to heal. But I cant even stand on my own 2 feet.

Gerry sent April 3

My youngest grandkid and the only one who lives in Ireland

Yes, even in hospital i will see her every 2 weeks. She is a real tonic.

Jan 5, 20 Hope all is well with you and your family, Greg. This is Holly, the youngest grandchild. Chinese/Irish. Speaks Cantonese and English, some Irish!

Sean sent July 1 at 10:27 AM

When I met Gerry he was living in a tiny flat on his own in an area called Kimmage. Close to the city centre and could be quite a rough area with gang wars etc

He never seemed to fit the stereotype of a hard-core Dublin street junkie at all. He was too educated and gentle

I wish I had more stories or anecdotes but unfortunately, I don’t, not off the top of my head. Maybe I’ll remember something

We did meet up several times though and had good chats about our lives. We even went for drives and walks in the countryside a couple of times but I haven’t seen him for 3 or 4 years now. Eventually, we just communicated by Messenger etc. I’m sorry Greg, I wish I had more

Gerry’s Politics

Gerry was very left wing and had very strong Irish Republican views. Sometimes he had a short fuse in political discussions but tried to be understanding that others were entitled to opposing views.

Brian B Dulin

Moderator

One of my last deep convos with Gerry Nealon..I thought I’d share…bless

Thanks Dul.

I actually thought that you were based in Ireland!

But I sympathise with you living there. I have a few very good friends who live in the US, and it pains me to see what is happening.

I have nothing against the people, but the politicians are getting more and more right wing. Trump being elected was a huge mistake, though I would have problems with Clinton too. I see Bernie Sanders as being the only person who has always looked after the people throughout his career. Imagine the reaction of the rest of the world if he had been chosen to run instead of Clinton? The US would have enormous respect, and we would live in a much safer world.

But when it comes to Hep-C, we are all on the same page. So we can work on that, and try forget about politics. It’s great to see the advances being made, and more States are finally making treatment available to all.

I have much respect for you also, and it’s great to be connected with Greg. I found him by joining a few HepC groups in ’15,when he was still doing treatment himself. I was F3, and still being refused treatment here. I only started online in 2014, and hadn’t any experience with computers, or even smartphones. So it was like a Godsend when I found Greg could get the meds for me! I will keep trying to get more people treated, and help people through the process.

Much respect, bro…. Gerry

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