“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.
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.