You're just 22 sitting in a doctor's office. You have been to many doctor's offices in the last few months but this visit is different.
This time the abnormalities related to your eye are something to worry about. This time it is cancer and you are about to become disabled.
Connect with Jess:
Her website: http://jessvanzeil.com
Her Instagram: https://www.instagram.com/jessvanzeil/
Connect with Peta:
Instagram: @petahooke
Website: www.icantstandpodcast.com
Email: icantstandpodcast@gmail.com
Episode Transcript:
Peta [00:00:02] Hello and welcome to The I Can't Stand Podcast the podcast answering your questions on what life is like when you have a disability. My name's Peter. I have cerebral palsy. I'm only a host you might already be able to hear. Or if this is your first episode, welcome. But I'm sick and I've lost my voice. So apologies. So I will get straight into the episode. It's a really good one. Without any further ado, let's get into it.
Jess [00:00:46] Hi. I am Jess Van Zeil. I have a few different disabilities, actually. My first disability, which is probably the most visible of them, is the fact that I have a left eye and I could lose my eye too. So when I was about 22. I also have a weakness through the right side of my body, and that is due to a brain surgery that happened. That was life, but did lead me with that as well. So it is something that I constantly deal with and I do have a couple of chronic illnesses as well. Just to add to the mix.
Peta [00:01:22] You actually answered my first question was, do you consider yourself to have a disability? So obviously you do. You mentioned before and it's quite interesting how people introduce themselves. Some people don't even mention that they have a disability when they talk to me. So you're obviously quite comfortable with the fact that you have a disability? I think.
Jess [00:01:43] So. When I was I think going through it initially as my actually probably was very different. I didn't quite understand what a disability was and that was definitely in my mind, still a lot of stigma to overcome and come to terms with on my own. But I think it's really important to be loud and proud of having a disability because it doesn't make me less of a person. It actually adds to the person I am today and the woman that I am today. I think it's really important for people to understand the reality of living with a disability and also the reality of living with chronic illnesses. Just because I think that isn't spoken enough and I think a lot of the time a lot of us do feel like we need to keep quiet or I have been told many times on social media that I am a burden on the health system and a whole bunch of things like that, which isn't it's not true and it's not fair to put that on to someone else. So I think it's really important to show the sides that the real sides of I need to rest, I need to give myself space, I need to actually take it to the that account, but also the other sides of what life really is like and the enjoyment and the other experiences that I also get to have and that dichotomy that is there as well.
Peta [00:02:59] I say this a lot on the podcast and I feel like a bit of a broken record, but I always think when I ask people about their disability, I'm always a bit hesitant because I know for me there's no trauma connected to my disability, but that's not the case for many people. Have you gone about approaching a disability? Have you ever felt that there is trauma connected to your disability considering your story?
Jess [00:03:26] For me, yes. There is a lot of trauma that is attached to my disability and the acceptance of what was going to happen. It all happened really quickly. We went from a stage of being told that my cancer, which was an ocular melanoma, it was a melanoma that grows on for me was conjuctival. So it was on the white of the eye. I was kind of told it was allowing the control that we had quit really early and the biopsy had been enough to remove the cancer from my body and everything looked really good. And that was the case for about six months. And then about two, three months after that final check-up, I went in for another appointment and we found five black spots on the whites of the eye. There was a lump underneath the islet and it went from this. You're all good to know. We have to get this sorted immediately and this needs to be drastic. And I just remember sitting there and kind of going through this whole thing of like, okay, like, I'm probably going to lose my eye. That's okay. I've seen other people with glass eyes. I know that I can drive. I know that they can live a pretty normal life. And then I remember the doctor kind of saying, Oh, no, it's not just going to be the eye that we need to take. We can take the eyelids as well, and we're going to have to be good. And I was like, okay, what does that mean? Like has this look. And he was like, Oh, you know, it's going to look pretty normal. It'll just kind of look like an armpit on your face.
Peta [00:05:00] Well, I guess I. I was like.
Jess [00:05:03] Oh, I guess really aren't the sexiest body part to begin with. Like, really, in my mind, the first thing, I was just like, oh, like smelly, gross, hairy, sweaty. And then on your face, like, hmm. And I just said, I did at that point, like, exploded at the doctor. And I was like, absolutely not. Like, you are not going to do this to me. You know, I know how society is. I know that we ostracise people who look different or who present differently. And I don't want that. I mean, I was 22 at the time. I was still in that phase of life where I really cared about not having even being seen in the same dress on social media twice. So, you know, looking different and standing out in a completely different way and in a way that I wasn't ready for was going to be really difficult and challenging. And the doctor had said to me, You either go through the surgery or you won't be here in five years. So there was also that sort of, okay, like this is life or death. This isn't just that a small decision. And I basically just locked myself in the room by myself. I my talk to anyone. I just needed to sit down. I was very angry and frustrated and overwhelmed with the whole thing. And I really just kind of let myself sit with all of those emotions and kind of allowed myself to go in all the different directions of looking at what life could look like by really embraced it and what that could look like. Or if I just decided that I wanted to lock myself away in my bedroom for the rest of my life and hide away from the world and hide away from the scrutiny that I was really afraid of facing. And I would always be lying if I said that there was not a temptation just to lock myself away and just to hide myself away because there was it was really that was the easy option for me. That was the easy way out. But it also did feel very selfish. And that was when I kept coming back to IS. I am being given a second chance at life. Not many people who have been given a cancer diagnosis are given that option. So it is selfish for me to not look at that option as a viable option. And that was actually where I kind of came up with this idea of doing the patches I'd seen. There was a rapper at the time, Catty, and she had this ridiculous eyepatch at the time. It was like massive, about a third of her face, and it was glitzy and it was sparkly. And I was like, You know what? If I can find eye patches like that and I can make it part of my personality, if I can make it part of my style, if I can really make it part of who I am and my identity, this isn't so scary. I get to do this on my terms. I found all these eye patches. I came down the next morning to my mom and I was like, This is what I'm doing. I'm going to get all these patches and this is how we're going to make this my situation and how I'm going to earn it and embrace it. At the end of the day, that was my way of taking control back into my hands and to continue to move forward.
Peta [00:08:05] There's nothing like a doctor's concern to really freak out a young person. I will never forget by the expression of my doctor's face personally. So for me, I can't even go into a hospital now without feeling very ill. But I'm really interested to hear from you how you would have told yourself if you were the doctor.
Jess [00:08:33] It was actually the reason, I guess, why I became sort predominantly like will my calling going on to social media and sharing my story, writing my book was I really wanted to hear from someone who had experienced what I was going to experience and what life would be like. And I want to say I'm getting it out here, but I wanted the reassurance that life was going to be not just okay, but I wasn't just going to survive this. But life could be continue to live believed and to be embraced and to be exciting and beautiful well beyond what I had ever imagined. And the thing that I asked my doctor for was, Can you connect me with someone? And his answer was, No, I don't want you to base your decision on someone else's outlook, and what if their outlook is very negative? So I think for me it would have been try to find someone or some way to connect myself with another person. I think that would have been so important and would have given me a lot more courage, I think, to go through with it and to understand that it wasn't. Going to be the end of my life. If anything, it was going to be the start of a very different life but a beautiful at that. And I think they were probably I probably wouldn't have mentioned the thing that that was that that was a concept.
Peta [00:09:56] And how do you go about managing anxiety in regards to your future health? I mean, you know, you've you've had possibly the worst sentence come out of a doctor's mouth before. How do you go about having that resilience that you're so passionate about?
Jess [00:10:15] I really was very adamant that I didn't want to know about my progress. So this I never found out my prognosis until I was actually deemed, to be clear as stable and potentially clear of cancer. But at the time, my prognosis actually should have been about 6 to 16 weeks. And I said to every single doctor, I don't want to know what that is. I want a plan in place and I want to know what our next steps up. And I want to know how I can best set myself up for success. Educating myself to a point. Not allowing myself the information that I know will but stressed me out or that I don't think is valuable, especially. And with melanoma and cancer in particular is so revolutionary, like treatments are changing consistently. So the data that they are using is 2 to 3 years old and it's out of date. I just decided to really empower myself with the information that we were surrounded by the best doctors, that we were making, the most educated decisions we could. And that was the best that I could do for myself. Anxiety as a whole, it's something that I still manage. Even to this day. I do get support from psychologists. It's not generalised anxiety. I have specific health anxiety and more specifically, PTSD. And I think that's what's happening with a lot of people who have had experiences in hospitals and it's really like life threatening or fearful or scary diagnoses. We we do experience that long term PTSD of going back to the hospital. At the moment, I'm actually facing it now. We detected HPV a few years ago. I've been monitoring it and stuff like that. And now those changes are in a place where they accounts of it is pre-cancerous. So going in finding someone who is specialised in those areas. So I'm saying a not a psychologist, she's a psychotherapist, I think, but she's specialised in pelvic pain and PTSD with medical PTSD. So finding those specialists within that area and then getting that support there has been really important and also just taking time out for me. Instead of being hard on myself for being stressed or anxious, just acknowledging that that's a feeling that I am feeling that it is as a result of so much that I've been through and having that time just to kind of. It's understandable. It's okay. But how do we then put things in place right now so that if my stress levels and my levels are higher than usual, how do we then mitigate that with more self-care, more self-love? For me, at the moment it's been building and a lot more exercise. Thank goodness we built our house recently and one of the biggest things I wanted me requested was a bath, because for me that is my quiet time is my space to really let go. And that learning to accept help, I think, is such a big thing when overcoming any sort of anxiety and stress and challenge in life.
Peta [00:13:36] It's been lovely to hear how you feel your cup. And I think when you're faced with challenges very young, it gives you a lot of clarity with what you want in life. So as you were sitting there at 22, did it really focus you in life or did it make you go, You know what, I'll just got to have the most fun possible because that's what life is about.
Jess [00:14:03] And I think it was a big if. I remember the one thing that really came up for me when I was diagnosed was actually this feeling of, I don't know whether this comes across as being a little bit morbid, but it was like looking at my bucket list in life and I remember sitting there and kind of going, You know what? I am so blessed. At the age of 22, I have an incredible bucket list that's already being ticked off. I had already gone scuba diving between 50 and 100 scuba dives, skydive from a place in Merimbula. I had done bungee jumping at the highest bungee point in the world. I had travelled. I worked overseas. I was studying. There was so many boxes that I ticked and it was actually this conscious recognition and real self like self pride in the fact that every time I've been given an opportunity, I hadn't been scared. I'd taken it and I embraced it. And it was this really. Beautiful feeling of being able to look at my life and go, There is nothing that I have been given the opportunity to do and I have said no to. There are things that yes, I would still love to do, but as far as what I had really changed in my life, for me, that was what really made me go. Every time you are given an opportunity, you take it and you embrace it because life is so short. Every experience that I've had has made me more self-reflective and more appreciative of everything that I do have in life and have compassion and to slow down. And I think that especially as someone with a disability who does experience a lot of chronic fatigue and a lot of ongoing fatigue, if I don't give myself that space to fly out, I know that that's also part of the process of achieving. Then I won't get there.
Peta [00:16:01] And is there anything you don't like about having a disability? Just.
Jess [00:16:05] Oh, the pirate jokes. Haha
Jess [00:16:09] And I think sometimes it's the entitlement that people feel like they have a right to my story or a right to my experience. There's different ways, I guess, people ask questions. And I think that's the thing is there is that sort of demand of, well, why do you wear an eye patch? Or What's with the eye patch and stuff that's very aggressive and it's very much like you can't actually get to know this and you don't have a right to know this. And one of the ways I use to mitigate battle is to come back with it was I used to scale when I had cancer. And the number of times that I would get looks of, Oh, how dare you beg me with your life story? And it's like you are like you actually asked me why I'm wearing the eye patch. If you couldn't handle the answer, then don't ask. I understand that human curiosity and coming from a place of compassion or concern is fine, but at the same time, there are times where it's too much. When I was looking for the job that I am currently in, there was a lot of fear around being scrutinised or being pulled out for having a disability or having, you know, extended periods of time in my resume where I was either working for myself because that was easier with the disability than working for someone else or rocking out with an eye patch and basically being told to turn around because I wasn't quite fitting the bill and things like that. So there are a lot of elements that are really challenging, but I think it comes down to like I wasn't anything else. I think it's it's working around changing the attitudes towards people with a disability rather than changing my situation and any sort of. Dislike I have about having a disability is more got to do with people's attitudes towards me as a person with a disability than it is about my actual disability.
Peta [00:18:07] And because your disability, like mine is very, you know, is obvious and you have hidden disabilities as well. Did you find the beauty standards of our society quite confronting? And is it an ongoing thing for you or have you just sort of come to accept that I have that I will never be what society wants or expects?
Jess [00:18:31] Yeah, I think as I said, like a 22, I think I was probably in that real thick of that age of beauty standards, just so high and so hyper aware of them. Being different and being in a position where I had to change my entire perspective of life and showing up in a different way. It has changed my perspective on beauty standards. You know, it was really hard. I met my husband just as a reference point after I had gone through my whole experience of losing my eye and then also the St Wall melanoma stuff. Sean's only been part of my life since I've been able to be over all of that. Sorry. I even went back to the dating scene. Waits And that was an interesting experience. I and I had to be really confident within myself. I had to be really confident with the fact that if someone wasn't willing to accept me as I am, then that's a reflection on them, not a reflection on me. And I think that's something it's born out of, is it's this external drive for sort of beauty standards and instead really focussing on showing up in the world as a person that I'm really truly proud of and that I think is incredibly beautiful on the inside. And I do look at myself now. I find myself beautiful.
Peta [00:19:55] And finally, what do you hope for in the future for people with disabilities?
Jess [00:20:00] No more Ablism.
Peta [00:20:02] Wouldn't that be nice?
Jess [00:20:03] So nice. I just. Yeah. The scrutiny, the needs or the feeling that we need to explain ourselves or our situation. It's hot, it's draining. It's really exhausting. Having a disability is tiring enough at times and to then feel like you constantly have to defend yourself or stick up for yourself. It shouldn't be a thing, and it's the recognition that we add such value to the world. We just have a different perspective and that should be embraced. It shouldn't be something that scrutinised or looked down upon.
Peta [00:20:37] Well, congratulations for getting this far in life. You've certainly achieved a lot. I look forward to watching and seeing what you do in the future. And thank you so much for speaking to me today.
Jess [00:20:49] Thanks, Peta.
Peta [00:20:53] Thank you for listening to this week's episode. I hope you enjoyed it. I found just to be super insightful. If you have a question for a future episode of the podcast, please get in contact with me. I'd love to hear from you. You can contact me via my Instagram account. My handle is at @petahooke PTA. H. Okay, you can send me an email. My email address is dot com or you can contact me through my website. The address is icantstandpodcast.com o. The links will be in the description. If you could please leave a rating and review. I'd super appreciate it. And if you're not subscribed, please subscribe. It really helps. Thanks so much. And until next week. Bye.