This time, my volunteers are, Melanie Luther, Courtney Westlake and Carly Findlay!
Hope what you read below is somewhat helpful :)
Melanie Luther
I first met Melanie through Facebook through
the Ichthyosis Support Group, literally last year, this time…happy Facebook
Anniversary, Melanie!
Melanie asks:
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 Westlake
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!
http://www.blessedbybrenna.com
Courtney Asks:
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
Carly Findlay
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,
http://carlyfindlay.blogspot.com
Carly Asks:
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!
xx
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