Treacher Collins Syndrome (TCS)

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✨Memoir Spotlight✨—“Normal” by Nathaniel Newman

Praised by R.J. Palacio as "wondrous"—this moving memoir follows a teenage boy with TC syndrome and his exceptional family from diagnosis at birth to now. “Normal”. Who is to say what this word means? For Magda Newman, it was a goal. She wanted her son Nathaniel to be able to play on the playground, swim at the beach, enjoy the moments his friends took for granted. But Nathaniel's severe Treacher Collins syndrome—a craniofacial condition—meant that other concerns came first. Could he eat without the aid of a gastrointestinal tube? Could he hear? Would he ever be able to breathe effortlessly? But Nathaniel looks at "normal" from a completely different perspective. In this uplifting and humorous memoir that includes black-and-white comic illustrations, mother and son tell the story of his growing up—from facing sixty-seven surgeries before the age of fifteen, to making friends, moving across the country, and persevering through hardships. How they tackle extraordinary circumstances with love and resilience is a true testament to Magda and Nathaniel's family, and to families everywhere who quietly but courageously persist.

📚 Happy reading!

#themightyreaders #TreacherCollinsSyndromeTCS

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What society does not want to hear (but actually should)

#TreacherCollinsSyndromeTCS #craniofacial

First of all: i am not a craniofacial disability advocate. Or by extension, i am not An advocate for anything at all. Im just An anonymous writer. So no, im not going to provide you information about myself. Not my age,not my country,not my hobby's and not the color of my hair. The only thing i Will say is that i am not a native English speaker.therefor,there Might be some spelling errors in my post. Also,my autocorrection van act weird. Do should you see really weird words,it's my autocorrection.

So Then, why am i writing ? Just to get it all out. Maybe in the hope people Might finally realise stuff ? (Probably idle hope,but i tried at least).

So Then, why am i writing anonymous? (You got it, Romana is not my real name, my real same doesnt even sound the slightest bit as Romana). Well, because I dont want to be recognized. I dont want everyone to Know about my past. Yes, i deliberately say past. I was born with treacher Collins syndrome. I deliberately say was. For i consider myself healed from treacher Collins syndrome. Ive deliberately chosen to have many esthetic surgeries to take the look typical to this condition away from me. And im not saying that that is what anyone with a craniofacial disability should do. It's a Very individual choice. But for me, as An individual, that look did not feel like "me". I wasn't feeling myself. I felt like i was born in the wrong body.

It's like transgender People. They also unfortunately we're born in the wrong body. But that is their past. They should not be seen now as the body they we're born in. That's none of People's business. You see, if I was born in a make body, but now im am female (and i went through the whole transgender proces), Then why would I Tell anyone I was born in a make body ? To be seen as "the woman who used to be a man?". I don't think so. Im a woman now, that's what's count. So the same goes for me. Why would i want to be seen as "the woman who was born with this disability?". I am now who i am, and refuse to be judged by my past. It's private, it's no People's business,unless you are someone who is very close to me.

But yes, this "past with a disability" was there. There is no magical way to erase it. And therefor i speak up. For there are People out there who's present is now what was my past. Or there Might be people who have a similar past to me, and People are aware of their past (yes, unfortunately,many People are still aware of my past, i cannot cut everyone out of my life because my past is traumatizing, that would be unfair to them, and also to myself,for is cut People out of my life that are Very dear to me. But also people who are not particulary dear to me (nothing against them, they are just people, i have nothing for nor against them) are aware of my past (smalle town,you Know). But to new people i do not talk about my past. No need to stick their noses in it. And also,my past is a trauma for me,so it's ligical i don't talk about it openly.

Anyway,enough introduction stuff. It was already way too long,i Know. But sometimes when i type i just keep typing (congrats to whoever reads it all,you deserve a medal).

OH yes, i also jump Very fast from one topic to another while writing, im not good in coherent writing.

So maybe ill divide my text in different Points so it's easier for whoever should read is to read in Points. So let's do that,ok?

1. "It's about your face" :

Aka = super stupid remark. Really, about my "face" ? My face is a part of my body , just like your face is one of yours, thank you. Just say it as it is : "about your disability" or "about your condition". But do not put my face (or any part of my body) together with my disease ,thank you. Thank you for seperating them. I had a disease that affected my face, but my face was not the disease ! It's Rude to assume that ! Don't say that, just because you're scared to say the word"disability " or "disease". Don't make a part of my body another word for my disease. It's shamefull and humilating. My face is ,like any other face,An instrument with which i can see, Taste, frown. My face is a bodypart. My face is not a disability.

In high school there was a girl who one day said to me "they we're talking about you on the bus". Me answered : "OH, was is positive or negative?". She answered Then :"it was about your face,so i think negative". First of all, stupid girl, if People are talking negative about me ,about something (my disease) i can not help, why on earth would you even mention to me that they we're talking about me? Just keep it for yourself,hearing that they are talking negative about you when you Cant do sh*t about it ,or Cant cobfront them with it (for i did not Know who "they" we're), is just hurtfull and the only thing it achieves is hurting someone. Do if you are planning to say something to someone that Will only Hurt them and to which they don't have a rebuttal, just keep your f*cking mouth shut.

And secondly : why saying about "my face" just say the word girl, say the word "disease/disability/condition". Newsflash: you Will not get contaigned with it if you say the word out loud. For you it Might be easier to say "your face" , for me, you are reducing my face to a disability i did not choose for !

2. "I wanted to register you for a makeover tv show"

Another dumb girl at school. I Mean, what would she think if I said that to her ? It's the same as saying "you're ugly so let them make you beautiful in a tv show and Then i get all the credits for i am the heroic girl who registred you and helped you to bevolen beautiful". First : no one, litteraly no one, wants to be called ugly. All people have a certain level of vanity and pride ! Second : can we please please realuse that a cheesy makeover tv show is absolutely in no way to compare to specialized surgery People with the condition i had or a similar one need ? Third : i don't want to be a poster girl for sensation tv shows. I was a Teenager,for crying out loud !

3. Im a person, not a f*cking Lego kit !

My ex best friend (and no, what im talking about here is not the reason for or friendship break up, there we're other reasons for it that had absolutely nothing to do with my condition,but im not going in depth about that,for it would be very off topic). But the thing is, what my ex best friend said what i Will write about Might be not the reason for our break up, i wasn't even angry at her at that moment (ok , i was, but i never showed it for she was my best friend at that time,and People do tend to tolerante a lot more from their best friend),but it was humilating to me.

Ok, i have prostetic ears. Not many people Know it,and i intend to keep it that way. But when i sleep, i have to put my prostetic ears off. And since i sleept over at hers several times, she knew. After all,she was my best friend Then,so i trusted my secret with her.

One day, her new boyfriend would come over. I asked her please not to Tell him about my prostetic ears (and she kept her word and did not Tell it), but she did say :"OH, if i told him, he would not mind,he would only think it's interesting". I Mean,all cool and we'll, but hey, i don't have any intention to be "interesting". My ears Might be prostetic,but they are still a part of my body. But interesting, that sounds like im a d*m'n Lego Building kit if which you can put pieces on and off instead of a person !

(By the way, nothing against Lego, on the contract, Lego is a super cool tot, but im a human and not a Lego kit, so i don't like it when my body is compared to a Lego kit and is labeled as "interesting" )

(More Will follow )

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