Don from Australia

[donpape]

hello my name is Don, I live in Australia, I have had major face surgery and lost most of the left side of my face including my eye, so I look very different now, I am finding it hard when I am in public. Before I taught children in Asia and was voted the funniest teacher in the school but now children are scared when they see me, I am finding it hard to cope with and was hoping to find people who have been in similar situations.

[Ankari420blazeit]

Hey mate! I’m from Australia too, but yeah I feel the same way as you do because I’ve have a condition called Plagiocephaly, which causes flatness of the skull and obvious facial asymmetry. Ever since I’ve been diagnosed, I find it hard to cope with. So you’re not alone, there’s other people like you and me. ♥️

[donpape in reply to Ankari420blazeit]

hello thanks for your reply, where in Australia do you live? What do you find hardest about going out in public?

[younique]

Hi Don! Welcome to the forum, I'm glad you found us.

Your situation sounds very difficult, especially with the reactions from children. I'm sorry that you can't connect with them in the way you could before.

What are some ways to get that connection back, do you think? I'm wondering whether you would be interested in writing children's books, or starting a blog for kids. Maybe volunteering at a children's hospital with kids who are facing their own challenges. Maybe you could even start a YouTube channel putting on funny puppet skits.

My difference has caused me to get very creative in how I am able to connect with others. It's a challenge getting people to see your personality when all they seem to be focused on is your difference. Basically I think, how can I be present in people's lives without having to be present in their lives. The internet is a valuable tool in this regard.

I hope someday soon the reactions from the public will matter less and less to you. I also hope you're able to surround yourself with supportive people who know you and see the person you still are inside. ❤️

All of us know what it's like to live with a visible difference, so you really are not alone. It's hard, but we can get through it together. Changing Faces has some great resources available to help you cope with this change in your life. Check out changingfaces.org.uk/advice...

Here for you!

[AlwaysSmiling Community Ambassador]

Hi donpape,

I'm sorry to hear that you are finding things hard at the minute due to your appearance.

I totally understand how you feel when you say children seem to be scared of you. I have had children stare at me and slowly back away before.

They will just be feeling this way because they maybe haven't seen anyone similar before. Some children are just curious, some are weary but most simply just don't understand.

I know it can be difficult at times but once the children see past your difference they will know that you are in no way scary and in fact you're just like them!

Hope this helps, stay safe and keep smiling😊

[donpape in reply to AlwaysSmiling]

Hello AlwaysSmiling, thanks for your reply. Yes adults staring I can handle. But I use to be a teacher in many Asian countries. The last school I taught in the children voted me as the funniest teacher, so its hard to go from that to seeing children looking scared when they see me, it breaks my heart. But smiling at them or just saying hi sometimes works and sometimes it makes it worse. Sounds like you have been through a lot too. I am trying a method called mindfulness. I have just started so I can say how well it works yet. I try to stay positive and are fine when I am alone but I realise long term that's not healthy, I actually feel best when I ride my motorcycle, I feel like I am in a cacoon and nothing worries me, its such a peaceful yet exciting place to be. please stay in contact, its good to have someone to talk too.

[AlwaysSmiling Community Ambassador in reply to donpape]

Yes, it is a good idea to smile at people who are staring, even if it's children. I find most of the time this works but I know it must be difficult for you if it's not working.

I know that things might be hard to adjust to but with what you have gone through already I know you are strong and you will be able to get through anything!

Keep doing the things that make you happy like riding your motorcycle. The mindfulness is a great idea too.

Best wishes😊

[flowersong]

Hi Don. Thanks for sharing. You've had big changes; I get why you are finding it hard. Due to cancer the left side of my face looks different; it has changed significantly 3 times and I now wear a facial prosthesis. It's been hard each time to adjust to the new me, with different challenges and a big impact on me and my quality of life. Children staring at me hurts the most as they are curious or scared but don't realise they are staring. I think films using characters with a facial difference as the 'scary' or 'bad' character don't help either. A smile or a simple explanation to children of what happened to my face to reassure them, really helps. Also getting to know my face (allowing happy and sad thoughts to just happen) has helped me feel confident about myself. It took me time, and small steps, but meant I could present myself as I am to the world; ie not feel ashamed of my face and let my personality show through. What’s happened to you is significant and at the same time you are still way more than just your face and you still have so much to give to those around you. Your life experience before your illness still counts, and it all adds to who you are as a person.

[donpape in reply to flowersong]

Hello flowersong, thanks for your reply. Yes adults staring I can handle. But I use to be a teacher in many Asian countries. The last school I taught in the children voted me as the funniest teacher, so its hard to go from that to seeing children looking scared when they see me, it breaks my heart. But smiling at them or just saying hi sometimes works and sometimes it makes it worse. Sounds like you have been through a lot too. I am trying a method called mindfulness. I have just started so I can say how well it works yet. I try to stay positive and are fine when I am alone but I realise long term that's not healthy, I actually feel best when I ride my motorcycle, I feel like I am in a cacoon and nothing worries me, its such a peaceful yet exciting place to be. please stay in contact, its good to have someone to talk too.

[flowersong]

Hi Don. It's great that riding your motorcycle is something you enjoy. My love of singing is still my 'switch off'. I immerse myself in music, with people where music is our shared theme, my appearance doesn't factor, and on stage my voice is the focus and admired. Singing started as a child so it's a strong part of my personality; a constant throughout and not waivering, despite what life has thrown at me. Being alone is ok. I am comfortable in my own company and like having time on my own to relax without pressures; time out to recharge. I guess many are the same (with or without a facial difference), while others can't be on their own. Also if time out is what works for you at this time then I'd say that's fine; a chance to recharge at your own pace. Mindfulness is good too; I enjoy focusing my mind on the now and I relax more than I realise! With children staring I have similar experience as you; sometimes I smile, sometimes I have no mental energy to smile; sometimes kids smile back, or sometimes still scared; and then I feel 'success' or 'sad' because the child has, in an instant, reminded me my face is different. There's no pattern. I've still not mastered it. I keep trying. I move on from each one (ie not dwell too much). I can't stop the staring so I focus on what I can control. I might work out what I could try next time I'm stared at and how I can manage my feelings after. I guess everyone has different experiences of children staring, so always worth asking others and choose elements that work for you.

[donpape in reply to flowersong]

Hi thanks for your reply. Wow you are a singer. Very impressive. What type of music do you sing? I love music and still go to concerts. I went to see queen and Alice cooper before the lockdown. I had tickets for the pixies, billy Bragg and the National. But who knows when they will play now. Since my operation my vinyl collection has exploded. It’s probably what I spend the most money on. I find music relaxes me and makes me feel alive. Maybe we have similar music taste. Since lockdown I haven’t seen many children so haven’t had to deal with it, but I have to find a way to cope with it as I find it depressing. Maybe I will wear a pirate patch as most children consider pirates to be fun. Where do you live? I live in a place called Hervey Bay in australia. Thank you for answering my messages

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[flowersong in reply to donpape]

Hi Don. I sing in a local choir so we mainly do classical but I've also sung some pop music. In my spare time I love musicals and I play the piano, enough so I can learn songs, as well as play my pieces of music I've learnt. I'm shy with piano and only play on my own, but with singing I love our concerts/performances. I'd love to sing solo in a local band, but don't have the confidence! I like Queen music and I've heard of Alice Cooper and Billy Bragg, but I've not heard of the Pixies and the National. We may not share the same taste in music, but as music is such a universal language and enjoyed by so many, in so many different forms, we both share the love of simply listening, enjoying and immersing ourselves in music, whatever the genre :-). I wonder if there are groups online you can tap into to share that love of music with? With lockdown focusing on bringing people together via the internet, I guess there are forums out there? I know with my 'choir' singing there are opportunities to do mass choir online recordings etc at the moment. I reckon loads of musicians and comedians and theatre shows (all stage productions) have no idea when they will restart again, with many fans waiting patiently. Maybe if you wear a pirate patch you could have Queen emblem or something on it for kids, to make you look cool and as a talking point/ice breaker. You know kids way more than me so you are the expert on what makes them laugh and feel relaxed and just be kids. I'm not an expert, but I do think once kids are reassured, they just get on with it. With my friends' kids I openly say if they have any questions just ask so both friends and their kids know I'm ok with my face and I'm not offended by curiosity. (The kids do ask and then they're off playing again. With close friends I allow their kids to touch my prosthetic eye very gently if they ask to). I just haven't worked out what to do with kids reactions in public! so any thoughts you have, or find on your journey, would be greatly received! I'll stick with smiling back at them for now. :-).

[donpape]

Hi thanks for your reply. Wow you are a singer. Very impressive. What type of music do you sing? I love music and still go to concerts. I went to see queen and Alice cooper before the lockdown. I had tickets for the pixies, billy Bragg and the National. But who knows when they will play now. Since my operation my vinyl collection has exploded. It’s probably what I spend the most money on. I find music relaxes me and makes me feel alive. Maybe we have similar music taste. Since lockdown I haven’t seen many children so haven’t had to deal with it, but I have to find a way to cope with it as I find it depressing. Maybe I will wear a pirate patch as most children consider pirates to be fun. Where do you live? I live in a place called Hervey Bay in australia. Thank you for answering my messages