There was a point in her life when she never wanted to be seen in public. “My mother always told me to cover up. She always feared that others would tease me for the way I look. She was always over-protective. I was told to constantly wear full sleeves at all times and cover my face somehow," says Nicole, who grew up resenting her mother for having passed on her fears to her. But as the years passed, Nicole understood her mother more and more. She realizes today, blaming her mother was wrong. It was nothing but her mother's deep-seated love and concern for her that made her constantlyworry for Nicole.
"She did not want anyone to ever make fun of me."
Nicole Porlier has Neurofibromatosis, also known as NF. This is a genetic disorder where tumours grow on the skin and wrap themselves around various nerves of the body. It affects 1 in 3,000 babies. She has struggled with NF all her life. Conditioning her mind to adjust to a society that is barely exposed tothis disorder makes it even harder for her. Born in 1966, when awareness for NF was far less known, far less accepted, she has seen much harder days than she sees today. “But then again, everyone has astory. It’s not fair to say that someone else’s pain is less traumatic or maybe more."
Tumours that are contained deep within the body are never seen but by doctors through extensive scans and surgeries. Nicole’s tumours however, are visible all over her face and her body. Also known as exposed fibromas, hundreds of bumps sit right under her skin, making those the first noticeable trait about Nicole that prompt strangers to stare and acquaintances to enquire ‘what is wrong with your face’, and random people to come and ask her if she is contagious. “No it is not contagious! Do you think I am stupid to just stand here at a public place, and wait for everyone to catch my tumours?”Nicole retorts to questions she feel are insulting to her intelligence, to say the least.
“It makes me angry,” says Nicole who is tired of constantly having to defend her appearance. There is little hope of the tumours ever disappearing. “It’s like cancer, it only spreads. There’s no cure. Not yet.”
“I have thought of suicide many times. But then I get stronger when I think of my family.”
Nicole’s doctor had told her parents at birth that she was not going to be able to complete school. “That I should go to a special needs school since I would grow up with mental disabilities. But my parents believed otherwise, and it is because of them, I was able to not only complete my school, but finished my graduation as well.” Nicole also speaks French, English, Spanish and German.
But every achievement, every reason of self-belief came crashing down for Nicole when she hit her twenties. “Those were definitely the hardest years of my life.”
To be told that she can never have the love of a ‘normal man’ by a dating agency marred her soul. To be turned away from a job because she was told that she was ‘far too ugly’ for the job of a receptionist, hurts her till today. “And that was the day I thought I was dressed my best, with some make up on, a pretty light lipstick. I really thought I had a chance at the interview. I was punctual, hardworking and a fantastic team worker. But the hiring agency did not think I was ‘pretty enough’,” says Nicole, wiping away her tears on remembering memories she tries hard to forget.
“I just couldn’t believe it, I wanted to die. I was devastated.”
A friend of Nicole recently died of the same condition that she has, which can make the mind fearful inthe least. “But I try not to focus on that,” Nicole’s triumphant voice can easily lift up the hopeless and the disheartened. “If I start focusing on more sadness than there already is, then how do I live? Part of how I have overcome my challenges are by not focussing on the negatives, on what’s the worst that could happen,” says Nicole as she reveals her secret on how she keeps so happy instead of having grown up with insecurities and humiliation.
It is said that unless the story has a happy ending, the story isn’t over yet.
Today Nicole has defined NF in her own special way, identifying it with New Freedom. The difference between the two meanings of the same word was finally separated by a man she met at a pharmacy. Perhaps the last straw she ever took on her back. “He asked me what I had on my face. And as usual I got all defensive,” says Nicole who was curt with her replies. “But then he opened my eyes. He made me realize that I had to stop putting up this big negative defensive wall around me. The questions will never stop,’ he told me, and he was right. The questions really never ever stop. So instead of hiding away from the questions, I made up my mind that I was going to face the world and answer all their questions. After all, if I didn’t do it, then who would? I finally realized that it was time to drop the wall.”
Nicole had finally found her freedom.
“I threw out the old me. I didn’t want to just be a symbol of weakness, for people to feel sorry for me.” That day was the last day she would cry, she promised herself. “I needed to start making a change. Starting with myself.”
No more hiding, no more being defensive. If she expected understanding, then people had to be educated and made aware of the condition.
According to BCNF, “Neurofibromatosis is pronounced neuro-fibroma-tosis and is commonly referred to as NF. Neurofibromatosis (NF) is an umbrella name for 3 distinct complex genetic disorders that share a common manifestation: tumour growth in the tissues that surround nerves. NF can result froma spontaneous genetic alteration or is inherited from one or both parents. While most of the tumours are benign, they can occasionally become malignant. Symptom manifestations and their severity vary greatly in all three forms of NF, making each form a distinct and complex genetic disorder. NF is equally prevalent across the world and is not limited by any gender, racial, social or economic boundaries. All three neurofibromatoses are chronic, progressive disorders that pose different challenges at different stages of life. Living with a lifelong disorder requires a person to manage not only the physical symptoms, but to find ways to cope with new circumstances that may impact psychological, social, economic, and quality-of-life issues. These psychosocial issues affect not only the individual with neurofibromatosis, but also family members and other loved ones.”
Nicole started to walk marathons, raising awareness, getting people involved, raising funds for the NF charity. “I will live in sadness no more,” Nicole’s mind was made up.
“I began to pen my entire journey down.” The medical condition and her own story. The pain and the sadness, the triumph and the joys. The strained relationships and all the humiliation. And her final freedom. It all poured out of her heart and on to the pages which then got published as a book. Carefully titled “Bumpy Roads Have Soft Shoulders”, Nicole released the book to raise even more awareness about NF. People needed to know so that those affected by the disorder should not have to hide their faces anymore. So that the hopeless could find hope and freedom, just the way Nicole did. The money was needed to be raised so that one day in the future, a cure could be found.
“100% of the money raised through the sale of my book goes towards the NF community,” says Nicole. She is now also sponsoring children affected by the disorder by sending them to NF camps. Having lived through a childhood with the condition, she knows all too well what any child or teen or an adult faces daily. “I sponsor these kids to camp just to bring a smile to their faces,” says a content Nicole. “I go to the mirror and tell myself that I love myself. And I tell the same thing to all those who are living in insecurities about themselves. I learnt not to take things personally. I learnt that if I couldn’t change the things around me then I had to change the way I saw things.”
“Wow Nicole!!” writes a person touched by Nicole’s moving story. “You are such an inspiration. I can only imagine how amazing it is for people who suffer from less know conditions to be able to share the challenges they have gone through and know that they are not alone. You are an inspiration because you are an example of how one does not need to be defined by their diagnosis and how the condition does not define you. You are amazing!!” she writes.
Nicole is now settled with the love of her life, Dennis. She blushes like a school girl as she remembers his words to her, “I only want to date you over and over and over again!”
Listening to her story, one is forced to believe in the saying “Never make a permanent decision based on temporary circumstances.” Nicole knows now, the reasons why she was put through difficult timesin life. Someone had to make the world a little bit more compassionate, a little bit more understanding. Having raised awareness and thousands of dollars through her marathons, and from the sale of her book, pushing every last penny into research for NF, Nicole today has come a long way, having touched the lives of hundreds.
It is true, Bumpy Roads do have Soft Shoulders.
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