Feel Different
By: Maria Luisa Mendiola
In honor of September being Craniofacial Awareness month, I want to introduce you to Ariel Henley, equal parts writer and activist for the disfigurement community.
Ariel has crouzon syndrome, a rare craniofacial disorder where the bones in the head fuse prematurely. Knowing her advocacy work, I decided to jump in and ask how she handles when strangers stare at her. “I try to be patient and understanding,” recognizing that sometimes it is not about her facial difference, but other times when the staring is incessant, she asks them “I am sorry, can I help you?” Â
“I don’t owe anyone an explanation,” she rightfully ascertains. Yet Ariel was not always this confident in her stance. Growing up her parents usually did the heavy work when they would go to public spaces and people would stare. “My dad would make a joke and wave at them and say Hi!” She also remembers how her twin sister and her had a code phrase, “feeling like a celebrity” and when they would say it, immediately, her parents would understand that they did not feel safe and should leave. Ariel has a point; people that look differently are three times more likely to experience assault.Â
It was not until recently that Ariel realized that while their parents were able to ignore some of the staring, they were constantly getting questions from her classmates’ parents. “My mom was on crouzon-syndrome awareness 24/7.” She regrets that her mom had to go through that and now puts the onus on parents, whether they have experience or not with disfigurement, to educate their children on this topic.
When asked if her parents fall in the overtly protective or the laid back camp, she admits that both of them belong to the later. Her parents never hid them away, quite the opposite Ariel and her sister were always encouraged to live their truth. She remembers a childhood filled with ballet practice and swim lessons. Ariel does remember, however, her mom and sisters’ effort in dressing her twin sister and her like little dolls. “I guess in a way they wanted us to look over-the-top adorable to distract from the facial differences.”Â
When asked when she knew she was different, Ariel admits she doesn’t know. She doesn’t remember a time when her parents sat her down to discuss her diagnosis. “I wonder if my condition wasn’t as visible, if it would have been different,” she admits. “I knew I was different, but I didn’t feel different.” When her mother recently asked her if while growing up she ever felt unwanted or unloved, Ariel unequivocally replied no but added that if anything, her difference just wasn’t addressed enough. In an effort to normalize their children’s experience, her parents didn’t understand that their daughters were part of a different group altogether, a marginalized group. This is a common occurrence in households where the majority doesn’t have disfigurement.
Ariel and her sister, Alixandria, went through more than 50 surgeries by the time they were 18 years old. When asked how they would prepare for the big day, she remembers going out to dinner with her family or her parents preparing their favorite meal. She remembers asking anesthesiologists and surgeons alike, all kinds of detailed questions about the procedures, regardless of how graphic their responses were. “This was my parent’s and our doctors’ way of giving us control in situations that were not optional,” she concludes.Â
Undergoing multiple invasive surgeries at such a young age, makes me think that I am interviewing a superhuman. Surely, these surgeries have made her a risk-taker and positioned her to live her life to the fullest. Ariel has now taken the biggest risk yet, writing a book about her experiences. In essence, reliving her past and taking not only her twin sister and herself for a ride, but her entire family. One person taking apart memory by memory, untangling the trauma and healing her family in the process. That to me is the definition of a #migamuse.Â
Ariel Henley’s memoir, A FACE FOR PiCASSO, will be published by FSG/Macmillan in Winter 2021.Â
Comments
WHAT TO DO AFTER GETTING SCAMMED ONLINE GO TO LOST RECOVERY MASTERS
I invested with a Crypto broker without proper research to know what I was hoarding my hard-earned money into, only to find out it was a hoax and sham. I invested over $375,000 USD estimated to be 5.6 BTC. I was unable to make any withdrawals out of my initial deposits let alone the gains they claimed I had earned even after meeting the bogus fees and charges they were always requested. Fortunately, I got to know about the Lost Recovery Masters, a recovery cryptocurrency expert that is well known and has the best tech skills in Bitcoin recovery programmers through research and positive reviews l saw on Google. After a couple of hours I consulted with them through their website https://lostrecoverymasters.com Within the next 24hours all my funds were recovered including my profits. Thank you Lost Recovery Masters. For assistance Consult them via:
Email: Support@lostrecoverymasters.com
Whatsapp (+44(7537)-105921)
website https://lostrecoverymasters.com
WHAT TO DO AFTER GETTING SCAMMED ONLINE GO TO LOST RECOVERY MASTERS
I invested with a Crypto broker without proper research to know what I was hoarding my hard-earned money into, only to find out it was a hoax and sham. I invested over $375,000 USD estimated to be 5.6 BTC. I was unable to make any withdrawals out of my initial deposits let alone the gains they claimed I had earned even after meeting the bogus fees and charges they were always requested. Fortunately, I got to know about the Lost Recovery Masters, a recovery cryptocurrency expert that is well known and has the best tech skills in Bitcoin recovery programmers through research and positive reviews l saw on Google. After a couple of hours I consulted with them through their website https://lostrecoverymasters.com Within the next 24hours all my funds were recovered including my profits. Thank you Lost Recovery Masters. For assistance Consult them via:
Email: Support@lostrecoverymasters.com
Whatsapp (+44(7537)-105921)
website https://lostrecoverymasters.com
Losing CAD 210,000 due to a frozen online investment platform was a nightmare I never imagined facing. Panic surged through me as I watched my hard-earned savings vanish into thin air. Every day felt like an eternity as I frantically searched for answers, reaching out through endless emails and phone calls, hoping for a glimmer of resolution. But as the days turned into weeks, and then months, my hope began to dwindle, replaced by a crushing sense of helplessness and despair. Just when I thought I had hit rock bottom, a ray of light appeared in the darkness. A friend, seeing my plight, recommended Speedy Recovery agency, a company specializing in financial recovery services. Skeptical but clinging to the last shreds of hope, I reached out to them, unsure if they could truly make a difference. From the moment I contacted Speedy Recovery agency, I knew I was in good hands. They listened to my story with empathy and patience, outlining their recovery process in detail and assuring me that they would do everything in their power to help. One particular member of their team,Speedy Recovery agency, stood out for his expertise and dedication. With his guidance, they began to unravel the complexities of my case, meticulously navigating legal hurdles and pursuing every avenue for recovery. The days that followed were a rollercoaster of emotions. There were moments when hope flickered, threatening to be extinguished by the overwhelming weight of uncertainty. But through it all, Speedy Recovery agency remained steadfast in their commitment to my case, keeping me informed of every development and offering reassurance when I needed it most. And then, against all odds, the breakthrough came. After months of tireless effort and unwavering determination, Speedy Recovery agency delivered the news I had been praying for: All CAD 210,000 of my funds had been recovered. Tears of relief streamed down my face as I read the confirmation email, unable to fully comprehend the magnitude of what had just occurred. But it wasn’t just about getting my money back. It was about reclaiming a sense of security. In a world where it’s all too easy to feel like a helpless victim, Speedy Recovery agency reminded me that there are still good people out there who are willing to fight for what’s right. Today, I stand here not as a victim, but as a survivor. My experience with Speedy Recovery agency is a testament to the power of resilience, the importance of seeking help when you need it, and the incredible impact that one company can have on the lives of those they serve. If you ever find yourself in a similar situation, don’t hesitate to reach out for assistance. And remember, even in the darkest of times, there is Speedy Recovery agency waiting to guide you home.
Their Email address is:
contact@ speedyrecoveryagency. com
Their WhatsApp No is : +4915210360580