S3E13 The joys of volunteering with Hana Javurkova

Geoff Allix  00:01

Welcome to Living Well with MS, the podcast from Overcoming MS for people with Multiple Sclerosis interested in making healthy lifestyle choices. I’m your host, Geoff Allix. Thank you for joining us for this new episode, I hope it makes you feel more informed and inspired about living a full life with MS. Don’t forget to check out our show notes for more information and useful links. You can find these on our website at overcomingms.org/podcast. If you enjoy the show, please spread the word about us on your social media channels. That is the kind of viral effect we can all smile about. Finally, don’t forget to subscribe to the show on your favorite podcast platform so you never miss an episode. Now, without further ado, on with the show. On this episode of the Living Well with MS podcast, I’ll be talking to Hana Javacova, who’s an event project manager, a traveller, and she says most importantly, a health freak. She’s also one of the OMS Volunteer Coordinators. We will be talking about the role volunteering plays in the OMS organization. Welcome to Living Well with MS Hana. Could you tell us a bit about yourself, your background and anything our audience should know to get a sense of who you are?

Hana Javacova  01:17

My name is Hana. I’m originally from Prague, but I’m currently living in Spain. I coordinate volunteers for Overcoming MS. I am in touch with all volunteers that are working and helping us make things better. In my career, I am an Event Poject Manager. Currently I organize only virtual events and I manage projects.

Geoff Allix  01:55

What is your MS journey?

Hana Javacova  02:02

My MS journey is really interesting. About five years ago, I experienced some symptoms, problems with my vision. Back then, I didn’t know anything about MS or any other disease. I remember I started Googling what it could be and actually two options popped up, one of them was a brain tumor and the other one was MS. I recall freaking out, and telling my mom that I definitely had one of those two diseases. She said I was crazy. Nothing new was happening, but I still had those symptoms so I went to see some doctors. First of all, they told me that just by looking at me they could tell that I definitely did not have either of those two diseases. They were super sure that I was just making things up and I remember they even offered me some antidepressants, just to make me feel better. I refused the antidepressants because I knew that what was happening was real.  After a while I went for my first MRI and they found some lesions so the doctors felt that I might have MS. They did more tests, but all of them came back negative. The doctors were unsure what to do next but felt it was best to move forward with an MS diagnosis. They offered me some drugs and one of the doctors said that from that MRI he felt that within seven years, I would definitely be disabled if I did not start taking those drugs. I refused to take the drugs and started Googling again. I started reading a lot about the brain itself, MS, about nutrition, and many other things and I eventually found OMS. Prior to finding OMS, I found a resource in Germany and Professor Jelinek and his book and that is how my journey started.

Geoff Allix  04:35

Can you tell us a bit about your experience on the OMS program? Can you share the good and bad, what was hard and what was easy?

Hana Javacova  04:44

To be honest, it was sort of hard and it is still hard. I did my own research for the first two years, I kind of customized my own program. I was searching a lot about anti-inflammatory foods and all those things. I eliminated gluten and, obviously, dairy, then all vegetables and all other foods that anyone said might be inflammatory. For the first year I was only eating a raw diet, nothing cooked. I ate fish which was a real plus. The diet itself wasn’t too hard for me. Not eating dairy was the hardest part for me because back then before all this happened, my diet was mainly yogurt and cheese, and suddenly they said no dairy. I was very distressed that I could not have dairy but then I realized that there were alternatives like almond yogurt and coconut yogurt and other substitues that I didn’t know about before, so now it’s fine. That was one very challenging part, but I would say that the most challenging part for me was the meditation. I Googled and I found some guided meditations and then I really got into it. I made up my mind to meditate but I really struggled because it was so hard to not think. I remember that when I first started meditating I kept repeating to myself, “Don’t think, don’t think, don’t think about anything” and it just didn’t work well. I thought meditation might not be the right thing for me.  It was a guided meditation, and someone was talking, I was focusing on that person’s voice and those words that the person was saying, but then you have that moment when there’s nothing, and I thought that’s the moment for you to meditate and that was the hardest moment for me. I was uncomfortable with guided meditation so I replaced the meditation with walking, or cooking or just doing something else instead. As I mentioned, I am working with many volunteers that are helping OMS. One of my peers, Sarah, and I scheduled calls with the volunteers to see if they were following the same OMS program or a similar program and how they were doing. During those calls some of them mentioned having the same experience as me, just being unable to meditate. That’s when I realized that some people are journalling, or, like me, walking, so they also replaced meditation with something else and it works for them too. 

Geoff Allix  08:42

I think a lot of people say that meditation is only one thing you can do, isn’t it. It’s really about your mental health and you being mindful and you don’t have to follow one strict path of meditation, there are lots of things you can do. OMS is marking this month to recognise the amazing contributions of our volunteers, and the difference they make to the organization. As the volunteer coordinator, can you please tell us exactly what that means? What does that involve for a volunteer coordinator for OMS?

Hana Javacova  09:23

Basically what we do is we have calls with all of the volunteers that are helping us. Currently, our role is actually to help them if they have an issue that is related to their task or to their well being itself. So they can always come to us and if we can help them or answer their questions, we do. If we cannot help them or answer them we connect them with someone else who can help them.  We are their resource to help them, or find them help. We are the volunteers’ connection to the OMS organization. We are their contact to give them answers or get them to someone else who can help them. We also recruit volunteers, onboard them, help them to set things up and connect them with their advisor, or someone that will actually be working with them. For example, this week we are reaching out to all of our volunteers and Ambassadots as well. There are two different groups, one group is the volunteers, and the other group is called the Ambassadors. They are all volunteers but we separate them this way. The Ambassadors are taking care of Circles and Circles are those groups of people that are in the same location. The Ambassadors either meet virtually or in person with the Circles. We also have volunteers that help with administration and the webpage and other office related activities. They’re not involved with helping us with our volunteers as the Ambassadors do that. This week, they are asking all of our volunteers to share pictures from their daily lives, like pictures of how they follow the process, such as how they are cooking or meditating. Then we are going to share those pictures with all of our volunteers. In addition, we are planning to organize a group call with all of the them next week so they will all have an opportunity to meet and chat.

Geoff Allix  12:33

What kind of impact do you think volunteers who you work with are making in helping OMS further its mission to make more people aware of the positive impact of healthy lifestyle changes for people with MS?

Hana Javacova  12:52

Our people are really important. They’re messengers. There are so many volunteers, there are so many people that are running those Circles and there are so many people in those Circles. All of those people can show that the OMS program really works. It’s not some kind of nonsense that someone said somewhere online like “Hey just follow this, and then it will magically work for you. You will be healed.” It’s not like that. You can actually meet them, talk to them, and see that the program actually works. I can see that it really works because I am with the volunteers, Ambassadors and Circles and they all follow the same program. It works for them. It works for me even though I modified it a bit. And that’s the impact. It’s not about words, it’s about the actions, and they are living proof that it works.

Geoff Allix  14:03

And why did you decide to dedicate so much of your volunteer energy to OMS?

Hana Javacova  14:08

I dedicate so much of my time to OMS because I experienced all those problems, my diagnosis was never confirmed and when I looked for a long term solution I found it at OMS. I just didn’t want to take any drugs. I’m not going to drag my shoulders because someone said that I might have MS.  My doctors actually told me we could continue to do tests, one of them offered me a chemo, a new kind of pills. They were new on the market and the doctor suggested that I try the first round but I am not going to try the first round of chemo on myself because nothing is wrong with me right now. I don’t have any symptoms. It was at that moment that I knew that I wanted to help other people. Perhaps someone in the same situation as I am and those with visible or invisible symptoms and even people who already have disabilities. I knew I just wanted to help them. Last summer I saw an Instagram post that there was a call for volunteers. I thought. “Oh my God This is my opportunity to get in to help others”. I reached out to Grazina, our CEO, and that’s how I got involved with OMS.

Geoff Allix  16:03

And if you had to provide some advice to people considering volunteering for OMS, what would that be?

Hana Javacova  16:13

I would say, anyone who’s interested in the whole program, or following the program, or knows someone who’s following that program, might be the ideal volunteer for us. I think what is more important for us is also what that person can offer. So let’s say, they’re really good at editing videos, they can just write us and say, “Hey, I’m really good at editing videos.” That will help us just to know that we can reach out to them once we need videos edited. We have a long list of volunteers with really different skills. We do have some ad hoc tasks and for those ad hoc tasks, we reach out to volunteers that reached out to us in the past. If they are still interested in helping, they get involved with that project. Anyone who says that they have specific skills could be helpful for us. So, it can be anything, such as editing, writing, or copywriting, or anyone who might want to start their own Circle. I know that there are many Circles in the UK, but there are not that many around the whole of Europe, or in the US. Anyone who would be interested in starting a Circle would be welcome.

Geoff Allix  17:58

Can you share any inspirational moments or experiences you’ve had as an OMS volunteer?

Hana Javacova  18:07

I would say it was inspiring for me to talk  to the volunteers and the people with MS. Just hearing their stories and how the whole program helped them has been inspiring for me. Seeing expansion of the OMS program also inspires me.

Geoff Allix  18:37

Thanks for sharing your perspectives on volunteering, and for the service that you provide to the OMS community. Before we finish, I wanted to ask you one last thing. If there is a tip, or piece of advice you could give to new members of the OMS community, something that served you well in your own journey, what would that be?

Hana Javacova  19:04

 I would say, this is all about a mental switch. The whole program is a mental switch as well. For example, the meditation part, whatever meditation is for each individual, it’s more about that mental switch  I saw it myself when many years ago when that doctor told me that I would definitely be disabled. Would I believe him or would I stay positive and look for something to help me stay well and mobile? I had a choice. I decided that I wanted to find something that would help me. It’s like a placebo, for some people it works. You just give them that pill and suddenly they are magically healed. It’s a mind thing. I would say it’s about being positive and believing that things will improve even though it might appear that this is the worst thing that ever happened to them. I remember asking myself, “Why me? Why not someone else? Why me?”  It’s always about how you handle the situation. I say keep a positive mindset. Think positively about things and the future. That’s really important.

Geoff Allix  20:56

Okay, with that, thank you very much for joining us. The next episodes we have our coffee break episode on June 21 with Rachel Knight talking about volunteering. And then on June the 30th we have David Lyons, who’s an MS fitness expert talking about the benefits of fitness for people with MS. Subscribe to our podcasts to never miss an episode and you can catch any episode of Living Well with MS on the OMS website or on your favorite podcast listening app. If you liked the program, please leave a review on Apple iTunes or on whatever you use to tune into the show. Feel free to share your comments and suggestions by emailing [email protected] Thank you for listening to this episode of Living Well with MS. Please check out this episode’s shownotes at overcomingms.org/podcast You’ll find all sorts of useful links and bonus information there. Do you have questions about this episode or ideas about future ones? Email us at [email protected]. We’d love to hear from you. You can also subscribe to the show on your favirite podcast platform so you never miss an episode. Living Well with MS is kindly supported by a grant from the Happy Charitable Trust. If you’d like to support the Overcoming MS charity and help keep our podcast advertising free you can donate online at overcomingms.org/donate. Thank you for your support. Living well with MS was produced by Overcoming MS the world’s leading Multiple Schlerosis healthy lifestyle charity. We are here to help form, support and empower everyone affected by MS. To find out more subscribe to our E-newsletter. Please visit our website at overcomingms.org Thanks again for tuning in and see you next time.