Nicole B. - Cohoes, NY - 2022
I am a 42 year old, beautiful woman who has ARCI-lamellar ichthyosis since birth.
I’ve known about FIRST since I was a kid. I also am a member of FIRST, so I see everyone’s stories and read them. I wanted to tell you my story, but I think I’m the odd ball out because I don’t have any horror stories to tell really. I see these trials and surveys where they ask you these horrible questions making you second guess yourself but that’s not the case for me. I just completed a survey and one of the questions stood out to me was “Are you Suicidal?” It’s awful when people feel that way and that a question like that is asked. Now adays there are so many social media groups, support systems, etc. out there for anyone to turn to. Of course, I too have wondered why I have this condition, why not my sibling, the what if I was normal thoughts, but they pass quickly. Back in the day, we didn’t have computers or social media, or anything of that nature. I assumed I was the only one who was different because I never met anyone like me and I didn’t know how to answer people’s questions when they were prying into my condition. There was no such thing as an internet.
I am a 42 year old, beautiful woman who has ARCI-lamellar ichthyosis since birth. My first 17-18 years of life included going through the mean girls in school, the cute crush, studying and volleyball games just like any other kid. At night, I went to Martial Arts and achieved my black belt at 16 years old in Tae Kwon Do. I also was captain of the volleyball team in high school. And lastly, I did ballet for a few years to gain grace and discipline in my mind, body and soul. My parents were amazing individuals who never let me sink into the dark when someone made fun of me or stared at me or made me feel like I didn’t belong. I had a great support system and sure it was tough at times as I got older because then the real world hit. I had to get a job, start doing everything on my own which meant approaching people head on and it was hard, no doubt. I moved to different states to see if the weather would be better for me. I’m originally from New York, moved to Georgia, Florida, Massachusetts and back to New York. I feel the seasons help me adjust better. Obviously, people like me can’t be in hot weather so Georgia and Florida were a mistake but a nice experience nonetheless. I absolutely love snow and winter months because I can go outside and not turn beat red like a lobster where everyone stares at me.
Now, the beauty of our condition and some little perks that I noticed in myself is pretty amazing. Here are a few that I have and maybe others do too, but I know my kids think it’s awesome. I can heal immediately, 90% faster than “normal” people, I can see in the dark because our eyes are always adjusting and can’t close, and I don’t feel as much pain as again “normal” people if I get cut or bruised because my skin is thick. I can walk on anything because again, thick skin, especially on my feet. I once had a screw in my foot for a couple days and didn’t even know it. And ladies, we don’t wrinkle. My skin is a beautiful tan color and I don’t have wrinkles when I cleanse my skin, exfoliate it, we are very special in that way.
Here come some bummers though like all of us, we have to plan around our skin. One bummer is my hair. It’s a beautiful curly texture but because of my parents’ genes, it’s more like hay so it doesn’t grow much. I use a nice lemongrass shampoo and I noticed if I use conditioner, it itches too much so scratch that nonsense. I use Aquaphor everyday almost every hour. I have jars in my room for when I step out of the shower, I have the lip balm and a tube in my purse, I have a tube in my bookbag for work and one in my car. Unfortunately, Aquaphor is greasy so I have to plan on my wardrobe. No material that will make it look like I’m sweating because let’s be honest, we don’t sweat. I can’t wear certain colors or textures because it’ll irritate me, especially lace and satin! I always have a long sleeve sweater or sweatshirt in case my skin starts to dry up but mainly I do wear short sleeves. I have a beautiful arm sleeve tattoo that is full of my five children. Now I am one that won’t wear shorts or skirts in public. I have to admit, I had too many issues with dumb people staring so to avoid it, I wear pants. I have cotton, jeans, stretch and spandex. All very nice material but I noticed tight fitting gym clothes feel better than airy pants as that makes my skin dry up way to fast. Lastly, the shredding, ugh what a pain in the tush. I have 3 vacuums in my home. Definitely have to keep them going at all times. Between that and my animal’s hair, it’s crazy. We don’t have much carpet so it’s easy to get it done in a few moments. But again, it’s a fact of life for us so whoever lives with us, well they probably should have known that ahead of time. My husband is cool with everything, he actually jokes about it with me to make me feel better. When he sees my face get down he simply flicks my skin and says something silly to make me laugh. Over in 5 minutes honestly. My kids are my everything. All rockstars as well and now I have a little army that supports me and if anyone at all says something to me, they defend me in a heartbeat. I must say though, nowadays, people don’t act the way they did years ago. The internet has so much information that no one is surprised anymore by any deformity or condition.
Life for me now is amazing. I am a high ranking professional in the Human Resource world, I have a beautiful, talented family that loves and supports each other and friends all over. I’d love to help others like me but like I said in the beginning, I probably am the odd ball out because I don’t mind having my skin condition. It’s a challenge, but it made me who I am today. It makes me stop and look at everyone’s battles and what they are going through. It made me realize that no one should be singled out so I include everyone and anyone who wants to be a part of my life. I also look deeper into people and try to understand what they feel or what they are going through. When you grow up with such a rare condition, you look at the world very differently than others. You see a lot more beauty, a lot more bliss, you try to see the good in everyone as well. And let’s face it, this isn’t the worst thing people can have. I know others might not agree with that, but everyone is different on how they live with their condition.