“The weak of this world would not be able to cope, adapt, and live with Ichthyosis. The condition is a blessing in disguise. You’re strong. He’s strong, She’s strong, Together, they are untouchable.”
~ Nick Jones
Sometimes when I talk to others with ichthyosis (or parents of children with the condition), or even others with chronic illnesses or disabilities, I feel like I may be unrealistically positive. I see the best in this (often shitty) situation. As I wrote last week, my life isn’t as gloomy as some expect.
I worry that people will see me as smug or blunt, or even a little arrogant, because I’ve just come to accept my lot in life. Too happy even. “This is just how it is”, I tell people. “I just get on with life. I have to”. And I believe what I say too.
My ichthyosis just is. A genetic condition that I was born with and that I will have for the rest of my life. I rarely plead or ask for answers. I’m not depressed (and my lack of depression has been questioned). I’m not looking for the latest treatment or cure, and I’m not questioning why this ‘happened’ to me.
I don’t lay blame and I’m not resentful. I’ve been asked a few times whether I blame my parents for passing on this genetic condition to me. I take offence to this suggestion. Never. (And I may be safe in saying many children with genetic conditions don’t blame their parents for it either.) My parents didn’t know they had the recessive gene. They didn’t do anything to cause ichthyosis. They did the best they could raising me. And I thank them for giving me the support and love to create a positive attitude, become somewhat resilient and accept this condition.
(I understand that people with chronic illnesses and disabilities – and their families – feel frustration, and do ask for answers. When I was a child, my parents, with my best intentions in mind, took me to various dermatologists and witch doctors in search of a cure, until I said “enough”. I understand (and have experienced) that living with a chronic illness or disability is not always easy or happy – there are are a range of emotions that come with having a chronic illness or disability – and I think emotional treatment is just as important as medical treatment. I also understand that blame will be placed. And all of that is ok too.
And I have only met one guy with ichthyosis in person, the rest of the contact I have in the community is online, so perhaps my written communication does get misinterpreted sometimes. I guess I just want to demonstrate that people with ichthyosis can have a fantastic life. it’s all in the attitude.)
For me, it’s about self acceptance and self awareness. I understand this condition makes me sore (sick) and I am comfortable adopting the terms ‘chronic illness’ and ‘disability’, because this condition is more than just appearance based. In fact, describing it by these terms make it easier to articulate, especially in the workplace. When someone always looks the same each day, it may be hard for others to detect when they are unwell.
I realised I had a chronic illness when I began to mentor young people at the hospital, I was a lot like them. We were like a mixed bag of lollies.Though our illnesses were vastly different and at varying levels of severity, our illnesses affected our lives in similar ways. Time off work and school. Isolation, bullying and misunderstanding. Trips to the specialist and hospital. We had our illnesses since birth or a lot of our lives. Some of the young people were milk bottles, others jubes. There were whizz fizzes and strawberries and cream and jellybeans. I was the Redskin of course. But we all came from the same bag, sharing familiarities of similar routines. And like lollies, making people smile, because we are just being ourselves.
Of course, not everyone needs to adopt this term ‘chronic illness’. Call your condition what you like, even if you refer to it as a ‘life ruining fucker’.
An illness/disability/condition/disease/life ruining fucker is what it is. It’s medical terms exchanged by doctors and nurses, pain, difference, isolation and loneliness, heartbreak, stares, exclusion and adjustment.
But it’s also a blessing. It means being able to stand out to the right people. It means being able to influence positively. It means being able to have a different perspective and perhaps a deeper understanding of human suffering. It’s about having the confidence to be yourself and accept your lot in life.
One of my dear friends Jess – a beautiful person and an incredibly gifted writer who has a severe chronic illness – wrote this for me for an interview I did (for an article that I have not written yet):
“I am sick. I have been, at times, profoundly disabled. This does not mean that I have a bad life. I have a difficult life, yes. But I also have a beautiful life. Anger and sadness cannot and will not place me into remission. It will not bring my beautiful friends back. It will not save the lives of those I love still fighting.
So this morning, as every other day, I will swallow the tablets which keep me alive a little longer. I will spit blood into the bathroom sink. Then I will wear my prettiest dress, a splash of red lipstick, and I will smile.
Today I am alive, and that is the most incredible of gifts.”
I listened to an interview between Richard Fidler and Gill Hicks. Australian Gill Hicks became a double amputee and sustained many other horrific injuries in the 2005 London bombings. It’s an amazing story of survival, acceptance, perspective and anti-hatred. Gill is a ‘peace activist’ – establishing MAD Nests – a network of peace initiatives – the antidote to terrorism.
Gill’s interview was so engaging, and I really do urge you to listen to it. She spoke about the terrorist attack – while she is angry, she bears no hatred toward to the terrorists. And despite her absolutely horrific injuries, she has taken on this life changing event for the best. She found unconditional love in her rescuers and while she fluttered between life and death, she made a decision to give back to the world when she recovered. One of the things that stood out for me is the humour she saw in her situation. She said that even though she was revived, she still has the same sense of humour as before.
You can hear Gill’s interview here.
As I listened to Gill’s interview, I realised that it is such a wonderful thing to accept your lot in life and affect change. You can choose anger, or you can choose to understand and make a difference to yourself and others. While Gill’s life has changed in a way most of us will never know (she spoke of her having more chance of winning the lottery than being involved in a terrorist attack – and joked that of course she didn’t win the lottery!), she carries on with such grace and acceptance.
She’s an amazing woman. She can teach us a lot about self acceptance and awareness of
our illness/disability/condition/disease/ and show this fucker need not ruin our lives.
.
Great article as ever Carly
Great piece, as always Carly!
I hate that you feel you need to apologise for your posivitity. Everyone copes with things differently, and frankly, your voice is one of the strongest, real voices of someone with a chronic illness I have read – you have your down and tough days, sure, but you live your life!
Your acceptance and education of others through sharing is amazing and inspiring!
Feel free not to answer this if you want/are lucky enough to have Children,how would you deal with this if your kid/kids have ichthosis?Would you be happy for them experience some of what you've been through?
Thanks fir reading Denise
Thanks so much Tash!
I think there is so much competition – one upmanship if you like – of illness and disability, and there's the expectation within the community (and outside, adni wrote last week) that happiness is hard to come by.
I'm not going to pretend that my life has been easy. Ichthyosis is not easy. But I certainly haven't let it stop me from doing the things I want to, nor wallow
Hi Phin
I've given this sine thought over the years and I cannot Articulate a definite answer.
There are things that I choose to leave off my blog and at this stage, the issue of having children is one of those.
I think sine = much
Damn you autocorrect!
Thanks cool & I respect that.Please excuse my impertinence I didn't seek to make you uncorfable but it was something I though while reading your post!
Didn't make me uncomfortable – I just prefer to maintain some privacy on my blog 🙂 good question though – maybe I will answer it one day.
Love this post. I have had many conversations with others about how I can feel accepting and positive about my disability challenges. It can be hard to understand how the disability is woven into the tapestry of who we are, so to seperate it out and curse/blame/despise it is to curse/blame/despise ourselves. It is what is is, and we are who we are. Thanks for shining your light!
Fabulous post and one I will have my children read..along with Gills interview. I have a child with a vision impairment and am already impressed with his own resilience and positive attitude. Thanks again for sharing 🙂
It is funny how people think that being a positive happy person requires no thought or work, it is just who you are. Choosing positivity can be a tough road. It is so much easier to just say that things are crap, feel sorry for me. But being positive is so much more rewarding.
Luckily my family hasn't had to deal with any major illnesses or chronic conditions. But we have been through some tough times. We lost our business at the start of the global financial crisis. There had been lots of struggle before, certainly lots more after as we took the bank to court over it. But throughout it, everyone, but especially my Dad has maintained a positive outlook. People often comment to me that they can't believe how he stays so positive after all the hard stuff that has happened. But as he says, we are all still here, we are all well and living good lives. What else is there but to be positive about that?
So thank you for sharing, I think your positivity just shines from you.
Loved that interview – drove around in circles for half an hour to keep listening. Gill Hicks is an amazing woman and her response to her life changing trauma and disability is beyond inspiring. I am sure you have a lot in common, you also have an amazing positivity and that drive to make a difference that shines through everything ou write.
I love redskins! And I love your mixed lolly metaphor. The quote from your friend Jess is inspiring. To live with grace and acceptance and to find joy wherever we can is definitely something to embrace and strive for. Thanks for a really thoughtful and moving post.
Carly you too are an amazing woman who teach so many.
I love your outlook on life. It is wonderful. Inspiring.
To question that is absurd.
You be happy, because you are a wise and beautiful person, and everyone deserves happiness.
Carly, loved this entry. I personally really needed to read it. I have a disability & I go thru phases of frustration & anger of why me, why so much pain, why is it all so hard. But after reading your entry it has made me realise I need to come to accept my lot in life & enjoy as much as I can & not waste anymore time feeling angry or frustrated. Your blog inspires me & gives me so much strength.
THANK YOU
As usual, I love this post and your outlook on life. Very inspirational!
Amazing piece. I love your outlook on life, and feel like I can relate to it in a different way with my problems with depression.
Thanks for writing this Carly. As others have said your positive attitude towards the gift of your life is beautiful and inspiring. Will check out the interview. Hope you're having a great weekend!
Gorgeous writing Carly. Your discussion of what could be a difficult issue was done with strength and humour. Thank you!
Sue
Carly, a lovely post. Part of me knows I'm lucky when it comes to my 'lot' in life… but much of the time I forget this and prefer to act like the victim! Poor old me.
I wish I could remember this post at times like that!
Deb
Great post, Carly- I'm going to share this like cray cray. I think it's crazy that you need to justify optimism but then I also know that you inspire me crazy. Lots of love and strength to you, awesome one. Cx
Cheryl – your support means the world to me. I agree – justifying optimism is crazy, but I hope that I set a good example in doing this. Thank you x
Deb – thank you so much – you know, I think we can all do with a reminder of the lucky lives we have, no matter how difficult we have it. Thank you for reading. xx
Hi Sue – thank you so much for the praise 🙂
Thank you Kell – so glad we found each other – I think we will grow to be good friends xx
Thank you Miss P – I am so glad you can relate, and I hope you are finding a way to manage your depression. I think you are amazing x
Thank you so much Anon x
This is such a lovely comment Bella – thank you. I am so glad that my writing resonated with you and could help you. I wish you all the best with your journey to acceptance – I think this comment shows you are well on your way xx
Miss Pink – thank you for your constant support. Thank you x
Jill – I am so glad my lolly metaphor worked. Phew! Thank you for reading and taking the time to comment xx
I listened to the Gill Hicks interview with amazement. What a beautiful, courageous and funny woman, full of positivity and drive. I wish more people could hear it. Thank you for your kind words Rachel 🙂
Hey Carly Findlay I was just reading the link Cheryl posted, didn't realise you live in #melbourne – just keep writing Carly. btw tthe lolly ref is what hooked the article for me – liked jellytots as a kid humbugs describe me #nerd & hard to comprehend
Hi Lisa – thank you for your comment, and support, as always. You've had a lot to deal with through losing your business – fantastic about your Dad's positivity and resilience I love that he has such a positive outlook about a difficult situation 🙂 Best wishes with the future business ventures.
Thank you so much x
Hi Lenka – yes, it is who we are and we can't change it. I have been reading Pride Against Prejudice today and the messages in that resonate with me so much. Thank you for your lovely comment 🙂
carly, this is just what i needed to read this morning to help lift my depressive mood and remind me that i can still have a fulfilling, enjoyable life despite illness hindering me on a daily basis. thank you for your inspiration. your courage and strength is admirable and i hope one day i can learn to accept my condition like you have and find inner peace. xx