Sunday, 2 August 2015

Hunter's Guest Post...Yep, She's Done it!

This Month's blog post comes from both Hunter Steinitz and myself, hope you enjoy it!

I've known Hunter for a pretty damn long time, for as long as I could remember. She's my Harlequin Ichthyosis sister from another family. And I adore her to pieces.

Way back when, when the internet wasn't quite what it is today,  Hunter's mum, Patti and my mum would communicate via written correspondence and they would seek guidance within each other as two mums raising kids with a life threatening skin disorder. This was a few years after I was adopted nobody knew exactly how long I had left. Our Paediatric Dermatologist in Hong Kong, knew of the Foundation For Ichthyosis and Related Skin Types and told my parents of this. And after my parents got in contact with the Foundation, it was the Steinitz family who provided a light in what must have been a very dark and uncertain time.  It was Patti and Mark who provided sound advice because they knew exactly the struggles my own parents were facing,the scares, the uncertainty, the lot.

Unfortunately, Patti is no longer with us. But she continues to shine through Hunter as she continues to speak and raise awareness of having a visible difference such as Harlequin Ichthyosis.

We met for the first time in Seattle, 2002 at the FIRST Skin Conference. I was about 9, she was 7 or so. (she'll have to correct me!) I must admit that when we first met, I wasn't sure of this person who looked almost identical to me. In a way, I felt like suddenly, I was no longer the one who stuck out. But I also didn't like that suddenly, there was more than one of me!

You'll notice in this picture (found by Mark, Hunter's awesome dad) that while Hunter is trying to be as lovely as humanly possible, I retain my disgusted "expat brat" look! (despite us both having just been bought stuffed toys from the hotel giftshop!) My hope is that if I manage to kick my arse into gear, I'll be able to attend the 2016 conference in San Diego and we WILL recreate this photo, garish headband and all!

I asked Hunter to write me a post about life in general. My blog is NOT all about a life threatening skin disorder but it's also a bit of a "free space". Hunter goes on to explain about "communication" and just how vital it is to all of us.

Hunter Says:

Communication is a necessary part of any relationship. You need to feel comfortable enough with the other person that you can openly convey your thoughts without fear of being misinterpreted. Over the past several months, I realized just how important communication is to maintaining solid relationships.
A few months ago, I got into a fight with my best friend. I thought that I was communicating my thoughts clearly but in fact I was confusing her by throwing new stuff at her without giving her any chance to react or even form an opinion. I just assumed that she knew what I meant and I imagined her response rather than listened to her actual response. Then I got mad at her imagined response and stopped talking to her for a while. Those few weeks that we didn’t speak were rough. But eventually, we found a way to work through it.  But my lesson in communication doesn’t stop there.
When I came home from school, I came home to a huge ball of misunderstandings. We have a number of close family members living with us. The thing about our family is that we don’t like to make trouble. We are more likely to see something that bothers us and decide to let it go (cue Frozen music!). All joking aside though, we try to let it go but a little bit of that anger and frustration stays. Time passes we move on to the next bother.  But then we do it again, and again, and again. Notice a pattern here? We keep letting the little things go so as to not start something over what we feel to be nothing. But eventually all that festers and boils until we cannot control our anger anymore. We lash out over something that seems minute but is actually the representation of a much larger problem.

Sometimes we think we know how the people around us are going to act, what they will do, and how they respond. I think it’s important though that we don’t let what we think become what we interpret to be truth. Just because I think someone is going to act a certain way doesn’t mean that they are going to act that way. Bryant H. McGill said, “One of the most sincere forms of respect is actually listening to what another has to say.” I need to pay more attention to what people actually say and do versus what I think they will say and do.

I'm blessed to now have a wonderful relationship with Hunter and her dad and it's all down to Social Media and today's technology. 10 years ago, we would have never been able to chat in the way that we do now. I love that Hunter always understands how I feel when i start bombarding her with messages when I'm grumpy. She is quite often the voice of reason and will even remind me to "be nice" when I feel compelled to answer emails which irritate me. Having a severe lack of Ichthyosis support network in HK really sucks. This is why I value the networks and contacts that I have now. 

But it's okay, she's dealt with plenty of strange behaviour from me, she also accepts that I WILL mock Americans in the same way as she WILL probably come back from London with a crappy version of the Queen's English :)

And the numerous iMessages, FaceTimes, Skypes and Facebook messages are just gonna keep coming!

           A group photo of all of both our families together in Seattle 2002...and none of us have actually changed! Except maybe Hunter is tons prettier than me!


  1. Although self-help measures won't cure ichthyosis, they may enhance the appearance and feel of harmed skin. This Ichthyosis Natural Treatment may be beneficial.

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