I’ve met a number of people with Ichthyosis on my overseas trip. It has been an amazing experience – we are all helping each other.
Mellissa and I have been in touch online since December last year. She posted the most amazing message about love in a Facebook group and I was drawn to her positivity and the love she has found in her husband.
I met Mellissa in person when I was in San Francisco. She has Lamellar Ichthyosis. She contacted me when I was there, interested in meeting me. I went to her workplace one afternoon and when she finished work we went off to eat in a good truck park and then she showed me around some of the local strips.
We share so much in common. Of course there is our Ichthyosis – she and I are both very driven, very positive and live a full life with our Ichthyosis. We’ve both got an incredible sense of optimism and know that we can achieve anything we put our mind to. We chatted at length about the need to surround ourselves with positive people. We also talked about the need to encourage people with Ichthyosis to live as active and fulfilling a life as possible, but also recognise the need for treatments and adjustments to make our skin comfortable enough to live this great life.
Mellissa and I are also the same age, live for food, love to travel, and have found loving men to settle with. She has an incredible amount of compassion and understanding of others’s struggles. Her job takes dedication and I love that she’s made a commitment to help others with their own struggles.
Mellissa has dedicated her story to her wonderful Mum – and today (11 May) is Mother’s Day in America and Australia). I hope she and her Mum have a great day together.
“When I was born the doctors were filled with fear and were in horror due to my condition. I was placed in isolation and my teenage single mom was warned I would never live a “normal” life, I would never be accepted by mainstream society. I am so thankful she chose to disregard their fear, she did not accept their proclamations.
She chose hope for me and taught me to take every good out of life that I wanted. She taught me that Ichthyosis did not disqualify me from the joy and happiness in life. She cared for the needs that were unique and made her shoulder available for me to cry on, when Ichthyosis made moments of life hard and when ignorant people were hurtful, but she did not allow me to be overcome. I am so thankful looking back, she was like a superhero the way she stood up for me to rude adults and taught me to use humor and grace to combat people’s nastiness.
I am certain it is her optimism that propelled me into living my life fully. I couldnt have understood at the time, but in childhood she had already taught me to be loved beyond ichthyosis, to not accept anything based sympathy or pitty. So I didn’t. I had amazing friends who enjoyed my company and my personality and my humor and probably my sarcasm too. I did great in school, was a cheerleader and involved in my youth group.
It wouldn’t have occurred to me to let Ichthyosis stop me from pursuing my dreams. So I didn’t. I got a degree and then lived in 12 countries volunteering for a Christian organization, where I discovered a passion for counseling, so then I got another degree and jumped into a career that I love.
I always hoped and believed for a love bigger than my skin condition and am grateful to have found it. I married than who is the answer to 29 years of prayer. He loves me for my heart for people, my passion for healing. He loves how much I can make him laugh and the ways I challenge him. We share an amazing life together in which Icthyothis plays only the tiniest part. We focus our life on laughing together, traveling, serving our community and sharing life with friends and family.
Working as a therapist in San Francisco I realize everyone has something to overcome. For me it was ichthyosis. It has not been easy…but whos life is? I realize now how much of my journey was marked by my mother’s optimism and her undying hope, love and support for me.
She absolutely has shaped me, my perspectives on life and my life as a survivor of Ichthyosis. I am not a victim. For this I am forever grateful to her. I look forward to passing on this same hope, love and faith to the next generation and to impart to my children that life is not always fair, sometimes its hard and it is filled with so much joy, and love and adventure.”
View Mellissa’s love story video.
May is Ichthyosis Awareness Month – I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.