Transcript: Sue Griffin, Polio New Zealand (The Art of Volunteering)

The following is a transcription of The Art of Volunteering Episode 13: Sue Griffin, Polio New Zealand.

Stormy Bell (00:00): Welcome back to another episode of The Art of Volunteering. Today we’re going completely around the world. We’re gonna go to New Zealand. My new friend, Sue Griffin is gonna be talking about how she volunteers and how she wants to turn the world purple on October 24th. Sue, welcome.

Sue Griffin (00:21): Kia ora.

Stormy Bell (00:24): Very cool. We have another new friend to me, Sue Devoli, and she said when we got talking to say purple gin and that just opened up everything when she said that.

Sue Griffin (00:41): Yes. Purple gin. Purple gin is my project for the year for World Polio Day which is October 24th.

Stormy Bell (00:55): What do you do with purple gin? You want everyone to drink gin that’s purple?

Sue Griffin (01:00): Well, that’d be good. No, the idea is the whole world remembers polio on October 24th every year. Cities all around the world, light up either an iconic structure of a sculpture or a building in purple. Buildings like the Burj Khalifa, The White House and Sydney Opera House. Unfortunately Aotearoa, or New Zealand, has been rather slack in doing this. We’re only a small country. We’ve only got 5 million people, which we only reached recently, but we’ve still not been very good at it. My job as a board member in Polio New Zealand is to correct that. Last year I managed to get 10 cities in New Zealand to light up something purple. It was either bridges or a nice building, something that was important to that city.

That worked really well except I realized that when people see buildings lit in a particular color, they don’t always realize the significance of it. They just think, oh, that’s a nice color this week. This year I want to make sure that people know what purple signifies. What it signifies is the fact that those of us that survived polio feel quite strongly that we need to make sure it never comes back. It’s not a poor me sort of day. It’s to remind the world that we have to keep it at bay. So this year I’m trying to find ways to lead up to October 24th, making sure that people understand why it’s purple. Purple signifies polio around the world because the volunteers and the polio vaccinators that do such wonderful work in third world countries around the world, they just try to vaccinate every child.

Sue Griffin (03:17): When they have given one child [the liquid drops], they put their little pinky finger on an ink pad and the pinky gets purple. That’s how purple has come to signify polio. In my efforts to try and find a way to bring it to the attention of perhaps younger generations, because you know I’m well in my seventies and I’m one of the younger ones. I want to make sure that people don’t forget that polio caused such a problem similar to COVID. The World Health Organization has said that if we don’t keep it at bay within 10 years, we’ll be back at 300,000 cases a year. In fact Papua New Guinea, which is only a plane right away from us, it’s only about maybe three hours from New Zealand by plane.

They had an outbreak a couple of years ago and it’s that close. So I’m trying to bring it to the younger ones. I thought, what can I do to make the younger ones feel a bit more involved? I thought, well, everybody likes to drink a bit. Most people do. In England a couple years ago came up. I have to say, it’s not my idea. England a few years ago, they created a purple gin. I went to one of the local wine and spirit store, and I said to him, ‘look, if I can persuade some of the many distilleries in New Zealand to create a purple gin’, because I think gin’s quite an easy one to color. It’s one that quite a lot of people probably drink. So I said, ‘if I can persuade some distilleries to create a purple gin, would you have a promotional period, like a week or a month where you have tastings and maybe experts run a little class on how to select good gin and all this sort of thing.’

Sue Griffin (05:20): They were very supportive. I written to at least 20 of the more than 100 gin distilleries in New Zealand, I’m ashamed to say. I have got a very positive response and some of them agreed that they will be creating a purple gin. They say, it’s not a problem and some of them are quite supportive and some of them even want to donate a little bit per bottle to Polio New Zealand.

Stormy Bell (05:53): That’s awesome.

Sue Griffin (05:55): I now have sort of been a victim of my own success with this because I didn’t really envision it being quite so successful. Now I’ve got to create tasting events and media tie ups and things like that. I’ll probably be creating some lunches, making people wear a purple hat or something like that. The wine shops doing these wine tastings, et cetera. So yeah, that’s the story of the purple gin.

Stormy Bell (06:26): That’s incredible. I love that journey. Now you had mentioned your survivor of polio.

Sue Griffin (06:33): Yes, I had polio in 1949 before most of the people that are in New Zealand anyway, because we have had a very good health system. Most of us contracted poly before vaccines were available. Vaccines only became created for polio in 1956. 55, 56. Most of us are fairly old and everyone’s affected differently, but most of my life was pretty reasonable actually. I had a bit of pain and lumped and couldn’t do some things, but life was normal. I got married, I had children, I became a nurse, and traveled around. They discovered however that about up to 40 years after you recovered it sort of, they used the word comes back to kick you in the butt, but it doesn’t really come back.

When you first recovered, your body created a lot of defense mechanisms. Ways for the paralyzed muscles to be stronger and get around things. Lots of different neurons that have sort of split themselves in half to cope where the other ones were destroyed. 40 years later, it’s not that it comes back, but these adaptions have worn away and can’t survive anymore. Some of us have ended back in braces, on calipers and I, myself am quite lucky in that I don’t, but I do have to use a wheelchair when I’m outside because I can’t stand up for very long. Yeah, it’s a bit of a thing. The problem, of course, in New Zealand, we’re a very sort of outdoorsy, strong people.

Sue Griffin (08:45): While we have an excellent health system, if you have an accident, even if you’re a foreigner visiting New Zealand, you’ve got free healthcare. If you fall over and break a hip or whatever, but if you dare to be sick because of a disease, then you don’t get quite the same benefits. Because of that, Polio New Zealand has come into existence and we act as a support group for each other. We raise funds. We have a very philanthropic family that assists us sometimes with funding.

Stormy Bell (09:21): Is that the Duncan family? I had read about them on your website.

Sue Griffin (09:27): Yes. Wonderful family, wonderful family. There they’re farmers in the King Country. Years ago, many years ago, 50 years ago, at least they split part of their farm off and used whatever profits came from that part, they put into a fund for polio. This was done way back in the forties and fifties when polio was around because one of the farm workers’ sons had polio, and they became very interested. They’ve been a tremendous help to us as polio survivors. They have now actually begun a foundation, a Duncan foundation, which focuses on other neuromuscular conditions which is what polio is. Without going on for hours, I can tell you how it works. A lot of people get polio and never get paralyzed and that’s just in the gut. If it continues on into the bloodstream, goes through the spinal canal to the brain is when you get the paralysis. It’s considered a neuromuscular disease as is multiple sclerosis and things like that.

Stormy Bell (10:44): Right. My uncle was in his eighties when he passed, he had polio and it took out his arm. He had very little use of his arm.

Sue Griffin (10:55): Yeah.

Stormy Bell (10:58): Interesting. Let’s see, you covered a lot of my questions.

Sue Griffin (11:04): Sorry I didn’t know much to tell you.

Stormy Bell (11:07): No, that’s awesome! I love it when you answer questions I haven’t asked. So you are a polio survivor. How did you get involved with Polio New Zealand? Have you always been involved with it or is this something you did after you retired? How did you get involved?

Sue Griffin (11:24): No, it was when polio came back and started to affect me. I was still living in Philadelphia at that time and nobody including the medical professionals had any idea what the problem was. I was working in emergency room trauma centers and I just had a lot, my pain was coming back to my legs like it had when I was younger and I couldn’t really do things. I was extremely tired. I’ve had polio in one arm and one leg, so my arm kept jumping and I went to a doctor and fortunately went to a very old doctor who was familiar with polio and he helped me.

There is a man in [the] USA. I think he lives in Trenton. Dr. Richard Bruno, who himself had polio, has been a huge research resource for polio and has written a very excellent book, which is very helpful. At the time I was working in the states as a nurse and it got to the point I couldn’t work anymore. I just couldn’t cope with the physical work. It’s quite physical in specialty areas. I had three sons, which I had with me in the states and while they were older, they had become immovable in that they had American girlfriends, went to university, and married American girls. I had choices to make. Did I go home where I could get taken care of and leave my children there or what?

Sue Griffin (13:33): I did have to come back to New Zealand. I couldn’t survive in the American, no offense, but in the American health system, I wouldn’t have survived. I came home to New Zealand where we have free healthcare. Fortunately two of my children followed me so partial success. When I got back here, I was still able to do things. I just wasn’t able to do the nursing. I did do some other things, but eventually I had to stop everything and I searched for some support and some answers and came across the Polio New Zealand association. I’ve been involved with them, I suppose for a good 15, 16 years and am now a board member and as I said, responsible for the purples.

Stormy Bell (14:30): Purples, excellent. How many people volunteer with Polio New Zealand? Just the board or do you have other roles that are volunteer?

Sue Griffin (14:41): Well, it’s listed as a charitable organization, which of course gives you benefits, not paying tax and all that sort of thing. Everyone on the board is a volunteer. Everybody in Polio New Zealand is a volunteer. We are a sort of self supporting group. There’s about 600 members. Although not everybody is actively doing anything, if anyone’s asked to do anything, there is no benefits or anything of doing it. So it’s just volunteer.

Stormy Bell (15:16): Okay. They volunteer because it’s personal to them and they want to see it continue?

Sue Griffin (15:31): Yes because one of the things is that, without crying poor me, it’s quite difficult. People today don’t know what it is and they’re not familiar with it. We have quite a lot of things like idiosyncrasies in the way we move things that other people might perceive as perhaps being rude. It’s difficult to stand up. Everyone else stands up to give a toast to somebody perhaps, and you can’t stand up. It’s difficult. You can’t, you know, and you have to explain why you walk the way you do. It’s difficult. One of the benefits of being in Polio New Zealand is when we get together, which in regions, we get together quite regularly for coffees or lunches. It’s almost like we have another family. It’s like a polio family we call it. It’s almost like a relief to get together with other people who have the same issues.

You don’t have to explain yourself. It’s quite a unique feeling really. I think everybody that’s in Polio New Zealand is invested in maintaining it as a viable group, which is always a bit of a concern because apart from refugees coming in in particular from the Malaysian and Asian countries, we haven’t had polio in New Zealand since 19- I think we had four cases in 1963, but apart from that, we haven’t had cases in New Zealand since 1956. We do have refugees. We do take quite a few refugees. At the moment we are all helping the Cambodian woman who has been here, who had polio in Cambodia and has got major problems. It’s not entirely gone in our memories here, but you know, COVID has caused… I just keep saying to people, do you mean COVID sort of has made people or it should make people remember how fragile we are as human beings. Unfortunately there’s a small percentage perhaps of non-believers, you know, anti-vaxers and it’s a concern that one day it will come back. Because if you don’t maintain [a] saturation rate of at least 92%, I think it is, it stands a chance of getting back in.

Stormy Bell (18:24): Like you had said, it is kind of scary because you can have it and have no symptoms initially. Right?

Sue Griffin (18:32): Well, correct.

Stormy Bell (18:35): But.

Sue Griffin (18:36): Correct. One of the things that is done in a proactive manner is waste waters, probably most places in the world. I know we do here. Waste waters are tested regularly for various diseases, one of which is polio. I think about three years ago, they found the polio virus present in the waste water in Melbourne. I’ll try and just quickly explain how that happens when people can get polio, it actually goes into their gut. If it sits in their gut, they don’t have any symptoms. They might feel like a flu. In fact, some people used to call it polio flu. You might feel those flu-like symptoms, but then it passes and that virus will be discreted with the feces so it can end up in the waste water.

It’s when it goes past there, as I said before into the blood system, that it becomes the big issue. I don’t think they realize particularly why that the difference is why some people, it just sits in the gut and others and progress. I guess it’s individual immunity levels and predilections to various types of bacteria. This is why they concentrate the third world vaccination rates because in countries where there’s poor sanitation and maybe open sewage, this of course is where if everybody’s not vaccinated, then one person can pick it up and so it’ll start off again.

Stormy Bell (20:29): And then it starts. Yeah. Wow.

Sue Griffin (20:33): I dunno if that answers your question or not.

Stormy Bell (20:35): It does! I’ve really enjoyed this conversation. I’m gonna invite you to love on Polio New Zealand, what you love about it. Then if people want to get involved in World Polio Day and wearing purple, where would they go to learn more about it. Just love on love on it.

Sue Griffin (21:06): Everywhere in the world, there’s usually a polio association. [The] United States has one and they have quite a lot, cause you know, the March of Dimes of course was for polio. Every year they used to have the March of Dimes fundraising thing that was creative. That March of Dimes was for polio. If you remember the original poster, it had a little boy wearing a couple of wearing calipers. Canada has a big one. I think Canada has one cause one of the big issues with people that have recovered from polio, if they were in an iron lung, which a lot were then, you’ve got things like respiratory problems, swallowing problems, sleep problems. Canada has a big respiratory section for people that have survived, been in the iron lungs.

England has a big one, Ireland. I’m not sure about most of the European countries, but I’m pretty sure they do. You can just go on to Google and just Google polio associations in your region and I’m sure you’ll come up with web pages. A really good one is Australia. Australia has a very structured polio group. I mean they’re a large country and not like poor little New Zealand. We are very small and they have an excellent website. If you went into Polio Australia, you’ll get all sorts of information. Also United Kingdom is really good. In fact, they’re the ones that came out with a purple- well the polio association. I don’t know if they came up with a purple gin. I was in England a few years ago and I was pretty amused by the gin distilleries everywhere!

Sue Griffin (23:09): I did a tour with some of my sisters and there was like Scotland and Shetland Islands. There was gin everywhere. It was amazing. I even had a bottle of gin, it was made from seaweed and it was beautiful. They have rhubarb gin and rhubarb and ginger and all sorts. As I said, I was a bit embarrassed at New Zealand. I mean, we are a small group of islands but we have over a hundred gin distilleries. I don’t know how that measures out per person. It’s only 5 million people. Just say it’s not a very good advertisement, is it for New Zealand, but we are very happy about it. One of the big issues that we’ve had as polios is struggling to have medical providers involved in learning about polio. Any doctor who’s in practice now has never seen polio unless they’ve come from Pakistan or India or somewhere like that.

They don’t know what to do most of the time. They sort of just push us. As we are old, they don’t tend to take you seriously. I think they just think they can. If you present with a painful leg, yes, they can see that it’s got atrophy and it’s weaker and that, but they can only think to fix it with the way they would fix any leg that was weaker and that they don’t consider the polio aspects. We’ve put a lot of work into care plans into the medical, on their computers. There’s quite a bit of difference between America and New Zealand healthcare and I’m sure it’s probably more technical now, but when I lived there, the doctors pretty much did their notes handwriting. [In] New Zealand, doctors put everything straight into a computer and they have clinical pathways in these applications, which help them check and make sure they haven’t missed anything essentially. We’ve worked quite hard to create a clinical pathway for polio, post polio syndrome as they call it and things like that. So we’ve done quite a bit.

Stormy Bell (25:57): Okay. Very cool. Well, I have enjoyed our conversation. I wanna hear how the gin goes this October and have you back on for a little brief update and if you were able to get everyone in New Zealand to drink purple gin.

Sue Griffin (26:17): Yeah, I’m trying! I’ll do my share.

Stormy Bell (26:22): You’ll do your share. Well thank you, Sue. I appreciate your time today.

Sue Griffin (26:29): No problem.

Stormy Bell (26:30): Thank you for tuning into The Art of Volunteering. Have a great day.

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