This time, my volunteers are, Melanie Luther, Courtney Westlake and Carly Findlay!
Hope what you read below is somewhat helpful :)
I first met Melanie through Facebook through the Ichthyosis Support Group, literally last year, this time…happy Facebook Anniversary, Melanie!
My daughter is very shy and when people say unkind things she just doesn't know how to handle it so just puts her head down and ignores them. But, I know this affects her deeply and she gets really upset. If anyone has any tips for her I would be very grateful xx
Having a visual difference is difficult for anyone and unfortunately, it’s going to happen whether we like it or not. I’m a terrible person to ask about handling people when they say unkind things because I have a habit of retaliating and sometimes making things worse. People who don’t have to go through such taunts as often as us often say something along the lines of “just ignore it”, or “don’t let it get to you”, or “you’re so much stronger than them”. Now this is all great and dandy, but there does come a point when it just gets too much and your head (metaphorically) explodes in frustration and sadness. Of course, if somebody makes a cruel remark about your appearance, you’re not really going to shake it off because it still hurts. I suppose my best advice would be, to talk, if something has upset you, talk, don’t think about how your issues may upset your mum, dad, or whomever, because they are there for you in god times and in bad. And holding in emotions will just cause more hurt.
Courtney has an adorable family and an adorable daughter with HI called Brenna (I hope wrote it right!) I first knew of Courtney when more Ichthyosis Support groups started popping up and subsequently, my parents were in touch with her and her husband Evan. Admittedly, I was still cautious of making contact as I was still uncomfortable of the idea of Ichthyosis networking. I was still relatively incognito at this stage until my cover was blown by her husband’s Aunt, Jennifer, at which point I thought it was time to crawl out from my shell and make myself known to mankind…Hi World!
Courtney has a blog as well, I think you should check that out too!
You seem really active, what special things do you do for your skin/temperature to participate in activities and sports?
I’d like to think I am relatively active and with many things, it’s taken a bit of common sense, a few facebook messages, networking and an open mind.
With regard to skin and temperature during activities, it takes a bit of common sense and knowing your own limitations. For example, when I do a day of rugby refereeing at a festival, we usually work in teams. I usually tell my team (who all already know me, but there’s always going to be someone who forgets) that I will do a few matches before stopping for a LONG water break and aircon. This happens especially in the summer months where temperatures can reach up to 34c centigrade and shade is scarce. For me, its all about pacing. The tradeoff is that while the rest of my team run out during the hottest hours, I pick up on the final few matches of the day while they head for the beer tent to spend their beer tokens, it’s a win win!
I think drinking (the non-alcoholic kind!) is key, and so is knowing your limits when to take time out. You need to remember that when you are participating in a team sport or doing activity, you are doing it, while knowing what could potentially happen. That being said though, I go out of the house with every intention of enjoying my time. And if I do come home with a fever, sun burn or just plain tired out, I just take care of it…or complain on Facebook J
Also it appears your parents have always encouraged you and not limited you at all - how old were you when you began to do some of your own skin care? Any other tips for fostering independence as our kids grow up? Thanks!
My parents are the most incredible people in the world (I’ll scream that) and I know that sometimes we butt heads (metaphorically, there’d be a lot of concussion and trips to hospital if we actually headbutted enough times!). But certainly, my parents have never stopped me from trying to do things. Just because I have HI, does not mean that life has to end there. Okay, so, we all know why the IchthyRef is called the IchthyRef. I originally wanted to play full contact rugby at 16 (should have started at 5, but my health was a bit too fragile at that point), that wasn’t going to happen after I was running the risk of brittle bones and osteoporosis. A few tears and loud moody strops later, my parents encouraged me to get down to the local (not really, it was a 45 minutes journey to the pitch!) rugby ground, DeA Tigers and see if I could help out. I should point out that I actually wanted my parents to come with me on my first meeting, but was told that if they did, there would be a lot of “talking over me” and I wouldn’t be able to demonstrate my full potential. So after checking out the club, I got in touch with the girl’s rugby coach, Tui and after a couple of weeks helping her and generally being her “biatch”, a matchday Sunday came up and I was put in contact with a member of staff, Steve Jones from HK Rugby. He had done his foot and was in a ski boot and luckily for me, I was to run errands for him most of the day! This basically jumpstarted my “no rest for the wicked” as most weekends, I would be catapulted across the whole of Hong Kong, assisting in match days before some chap (probably Steve) who mentioned that I would be a good referee and that they were recruiting. A couple of emails later and I was sitting in the Police Officers Club, attending my IRB Level 1 Match Official Course, preparing to train as a rugby ref. That’s just reminded me, I’m due to retake my accreditation this year! This is the same where Sailiability (sailing for the disabled) is concerned, it’s merely a case of checking things out and if you like it and think you and others will benefit from it, go for it!
Secondly, my parents have always had a mantra of “give it a go”. Because if it doesn’t work, well, that’s okay. That’s the same with many of the things I’ve done. I’ve been terrified, I’ve gone and done it, and I’ve survived! So yep, give things ago, there’s no harm in trying! And with the rough and tumble stuff? We just dealt with the cuts and bruises afterwards, with a bit of humour and ‘I told you so”.
As with skin care independence, I think that started at about 16? I’d have to double check that. But at that point, that was really creaming my eye lids to stop them stretching out too much. I’m still shockingly lazy when it comes to my skin care keeping on top of things, but that’s something one will only learn in the long run (or in my case, the eternity-run) but I will say since we attended the FIRST conference in Seattle in 2002, (the same year I met Hunter, Merritt, Laura and Katie), I’ve become almost anal about never leaving the house without a tub of Vaseline to lube up my eyelids. So I suppose that’s part of the skin care already sorted J
I heard about Carly a LONG time ago, I believe my dad introduced me to one of her articles or I might have picked her up on Twitter, I can’t remember, but I think we will both admit, we got off to a rocky start when one of our first encounters on Facebook involved a photo of me in my graduation ball gown. She commented on how we looked alike and how we had a similar bone structure. I quickly quaffed that idea and quite bluntly told her so and that we didn’t look remotely similar. I was resoundly informed of my interesting behavior online and wrote an apology to Carly, explaining that she was the first person to have commented on anything regarding Ichthyosis since at that point, I was living the life of an Ichthyosis sufferer in denial. I am pleased to say however, we have patched things up and I was lucky enough to be included in her Ichthyosis Awareness Month 2013. She also runs a great blog too, she does web design much better than the IchthyRef!
Check it out at,
My question is how do you keep resilient, especially after the house hunt ordeal? How do you laugh at it? Again feel free to use names and link back.
Truthfully, I don’t know how I do keep resilient, because I certainly don’t feel like I’m a resilient person when it comes to being metaphorically slapped in the face. Especially with the house hunt incident, I had already braced myself for a reaction of some sorts, because that’s just a way of life for me. Everywhere I go, everyone I meet, I absolutely feel the need to keep up a protective barrier for myself because the hurt and sadness can come almost instantaneously. While I’m always prepared for the “oh, you look burnt”, “were you in a fire”, etc comments, I was not prepared for when she sprouted out her attack when she said really quite openly, that she thought I was incredibly ugly and that I was too ugly to share with anyone. It is unfortunately well known in Asia that people react differently to situations. I’ve noticed that while the Western world is somewhat more discreet in their shock toward difference, the Asian world is more outward with their reactions, they will waste no time in displaying their emotions toward someone. Sometimes, you have to really laugh at the situation that you find yourself in because it’s the only way to move forward. You sometimes at to laugh at people’s ignorance and having lived in a part of the world where ignorance is not bliss, you have to learn to roll with it.
Remember, if anyone has any questions, feel free to shoot me a question, be it via Facebook on my IchthyRef page or through Twitter...or just message me!
Thanks for reading!