Chapter One
I’m a 23 Brazilian girl and I’ve discovered this site by looking for scoliosis news. I decided to tell my story to all of you as I realized you all like braces.
PS: FIRST I NEED TO SAY THAT I’M A PORTUGUESE SPEAKER, SO SORRY FOR WRONG WORDS OR SOME BAD MEANING. I’ll TRY TO DO MY BEST!!!!
Well, through all my teen age, I had a big panic of photos, images, mirror and all that stuff. I got a clear reason for that: I’ve been wearing a Milwaukee brace for almost 5 years… It was for need and I know it’s hard enough to make you sad and really upset.
Brace user’s are always on focus. People even those who just “take a look” and specially the cruel kind that in fact stare at you, they all think about the brace thing. I don’t know what they wonder about it, but now, being off, I can say this experience adds to you courage and force.
Sometimes, I take my brace out of the cabinet (no, I don’t miss it …) and remember that period of my life, some years ago, not too far, but really difficult. It was really a complicated period for a girl because our world is too visual: images have more value than words or unfortunately feelings.
I worn a traditional Milwaukee brace from 12 to 17 (a big time…). It was the usual type with throat mould, neck ring, chin pad (that’s the worst piece of any brace, isn’t it???) and some bands and pads all along on the 3 steel bars. My girdle was made of plastic which I think is easier for cleaning.
My parents took me to a surgeon when I was 11. At the age of 12, I had my brace on. I remember exactly the doctor’s words: “No more time to lose, let’s put a brace in your back.” A brace? What is that? Of course, I had a very small idea of that. But when you see someone braced, you don’t image how it really is. The doctor told us to come again next day to have a better view of my case, to discuss about my future braces and how it works. My old brother told me: “You going to be horrible, like a metal robot, it’s ridiculous…
Coming back from the doctor was sad. I didn’t say a word. I didn’t believe I had to wear a brace. Mom told me she would support me. We talked a lot, she tried to show me it won’t be the end of the world.
But nobody could change reality. My curve was in 24 degrees and my treatment would be long and hard to keep on: 23 hours daily, period of 3 to 5 years. The measurements were all taken, week later my brace was done, waiting for me.
I remember Mom and I at the clinic. There were also 2 boys with their parents in the waiting room. One was carrying an x-ray and wearing a brace. He seems to be very happy and to be well with the brace on. Mom made me realise for first time that the brace isn’t a problem (using the boy as a prove).But I was afraid.
First, I’ve learned how to put my brace and the adjusts that must be respected. Maria, the nurse took me alone with her and we spent an hour talking, she’s got experience with scoliosis patients. I finally put it on by me and also had put all my clothes, when the door opened: it was Mom. She opened a big smile and looking to me, she said: “You look great darling, trust me, you are ok.” Then, the doctor told me that we need to check up the curve to have control of my scoliosis. That was the start…….
The brace structure, especially the neck ring itself has two different “powers”. Although it “protects” you, it also “exposes”. Let me explain my ideas of the brace thing:
1) First idea: protection-The neck ring in its function makes you look always straight ahead, no head or neck moves are allowed. Ok, by this way , you can’t see people’s reaction, of course some of them turn and keep looking and me, just because I worn a brace. Thousands of time I’ve felt that (as most brace users do). By the way, can’t move, can’t see, so it doesn’t matter, try to abort, be strong and go on, move…
2) Second idea: expose – As being in a very rigid position you must stare and face everyone who looks in front of you. When you don’t wear a brace, it’s simple: you just look away, don’t face. It was not my case!!!So I made my mind to be happy and normal with mu brace on.
Don’t try to lie to yourself, it will be cruel. I never had an illusion that I could totally hide my neck brace. Of course not!!! It comes from pelvis to chin, impossible to be full covered. It was there, it must be for my benefit. Loose dresses, pants and large t-shirts were my basic uniform. I had to change my conception of dressing, even my own style. I love tops but I never went out of my house on a tank top. I remember that all my friends were starting to put on tops because of the growing of the breasts; they all were proud of that, as a signal of getting older and getting boyfriends. I felt very shy because my breasts were really bigger than the other’s girls. But, I couldn’t show my “advantage” because of the brace.
I really took a long time for me to agree with the idea of no more beach days. All my friends after classes went on the beach and I had to be in my brace. In the start, I usually stayed at home because in my mind I couldn’t be there: it’s a place to be in a bikini, to swim and play, things I really enjoy. But some friends started to ask for my presence. So I put on my shorts and my t-shirt and went on. I had no diving, no bikini, but I felt good of not being a part of my friends. I liked to seat on a chair, take some sun, talk, and have some fun. My brace won’t take me these pleasures. A brace puts limits on your life but it doesn’t let you apart of nothing.
I love big earrings, especially those which come down to the chin. Forget about!!! Think: less is more… (You already got a very unusual thing). It also works for neck laces, tight blouses and make-up. Remember, less sometimes means more….
I got 2 facts that were important like lessons that I’ve learned: I can’t forget them!!!!!!!
1) I wasn’t very used to my brace; I always sat on the last desk of the class, beside the wall (to avoid looking). One pen, fallen from my hand and it was near but difficult to caught (especially by the neck ring). A boy, next seat offered his help, but I said: “No, that’s ok, I’ll take it.” I had an “adventure” to rescue my pen, had to be on my knees, to force my neck and so on. It must have been easier if I accepted the fact that a help is necessary and normal. People don’t help you because they think you’re totally unable. It’s just a gently way of treatment. Accept. Think that some people also have pleasure to be kind, not to be sorrow….
2) Being in a fully place, there was a girl carrying a wool coat. We had little space to walk. While she was coming behind me, her coat’s collar stuck on a screw of my neck ring!!!! Could you believe that????? She got really embarrassed, everybody looked to us. I think some strong things can happen, try to make fun, to have sense of humour. Don’t punish yourself and never think that you got bad luck or I’ve been born to suffer. HOLD ON YOUR BRACE AND KEEP IT ON!!!! BELIVE ME, IT WORKS.
Chapter Two
I wore my Milwaukee brace from October 1989 until January 1994. During this big time, I met people with scoliosis, some curves really bigger than mine ( Nov 1989 – 24 degrees) . I also know people who refused the brace because of appearance and comfort. Anyway, each case is particular but don’t refuse treatment, try to find the best way to handle. I found the brace was mine salvation to avoid a spine surgery. So I wore it.
At 16 my doctor told me I finally could increase time off the brace. The x-ray showed my spine was getting straighter so I was able to take it out for 4 hours daily. Of course I was very happy with that new situation, seems like being nearer the day of saying “no more brace”. But, believe me, I felt a strange sensation. I usually have 1 hour off, enough for bath sand for some specific exercises. I was completely used to lead my life in my brace, so 4 hours off seems something unusual!!! People asked me: Don’t you wear a brace anymore?? I had to explain it lots of time. Yes, everyone is curious about braces…
I’ve made my mind to be normal, to not depend on bracing to improve my posture. 4 hours off means “watch and correct your movements as much as you can”. Even with the brace off I was afraid that abrupt activities and heavy exercises could worsen my curve. I must say that I’m very lazy, I don’t like doing exercises, so I never practice any sport, although I agree how important it is. That period was great to check and think about my way of seating, walking, especially my way of standing position.
You don’t imagine how I missed the sunny days at the beach. Now they came back with the 4 hours off. After I got my brace on, I had to stop going to the beach, well I still went but had no swimming….
Before leaving home I took my brace off, put my beautiful bikini and went on, very, very happy !! Deep blue sea of Ipanema beach. Sun touching all my body…..
PS: I live in Rio de Janeiro, a tropical city in Brazil where people go beach even in winter (temperature between 60 – 68 F). Have you heard the song called “The girl from Ipanema”. It’s a famous Brazilian song which tells a story of a man who goes to Ipanema beach to see the girl of his dreams. She walks, passes and look everything but never gives him a chance. It’s poetry, a classic even performed by Frank Sinatra and Kenny G. You should try it!!!
Ipanema beach, there I first saw my boyfriend. He was a friend of my old brother, they studied together in university. Nowadays, my brother and I have a great relationship (he is 5 years older). He also has scoliosis but he never needs treatment just a simple annual x-ray for control. When I worn the Milwaukee, he disturbed me a lot, making jokes and proud for no bracing need.
I remember once we had travel to São Paulo, about 4 ½ hours away from Rio. I had just being braced a couple of weeks and it was my first long distance trip wearing my brace. We must go to my cousin’s wedding and I didn’t want to go: many hours in the road, all distance relatives (many of them didn’t know about my brace, so imagine their faces and lots of questions) I felt traveling by car very bad because the brace gets up and downs by the car movements, the neck ring and the chin pad balance a lot, difficult to keep in the right place. I put a small pillow around my neck and carry a bigger one. As we get faster and time went by I felt my brace out of place and I had to hold the front steel bar to keep it right, to avoid hurting. I also put a pillow to make down force. My brother in the back seat beside me didn’t miss a chance to make his own comments in soft kind words: “any difficult??” “Do you intent to go on holding this bar for 4 hours, darling?” I felt nervous because we also got a traffic jam until São Paulo entrance, which added 40 minutes in total time. Arriving in the hotel in the center of São Paulo was great to relax and sleep a lot. Next day, I knew would be hard….. First I asked Mom if she noticed they all didn’t knew about my brace. She said: No, why should I tell? They are very busy by the wedding, and sure nobody will make jokes, they all love you. Again I said I just want to stay in bed, but have to go. Imagine the scene, all my younger cousins and those old aunts and uncles that you never see looking at me and quite asking at the same time: “What is this in your neck Paloma?? I gave no reply with a shy smile, and Mom interrupted to explain that I got a problem in my back and so on. What a family support…..
Well, let’s get a good episode, a positive experience with my dear brace. Let’s get back to the beach!!!! Where I met my boyfriend!!!!
When I first saw him at the beach, I didn’t knew he was my brother’s friend. I realized that when he as being close friend of my brother, suddenly appeared my home for first time. I thought: dear, it’s the beach boy…….. here….. I was wearing large pants and old t- shirt, lying in the living room sofa watching tv. The bell rang I imagine one of the neighborhood kids just getting in, but no, it wasn’t . It was a new voice, so I got up ( I had no way of turning my head) trying to run fast to my room, but my brother brought him exactly to the living room ( where I was!!!! ) . He introduced him and we both said “hi, how are you” and so on. I went room, looked in the mirror to check how ugly I was ( imagine that specific old-fashioned clothes you desire only to stay home….and skin face of just asleep !!!! Marcelo always came my home to meet my brother, to go out, to play football and talk. He is 6 years older than me, that’s what I think really made a lot of difference. My brother compared to him was very fool and stupid. I think most girls need a older man because they know what they want, have more response and give more value to their partners. We got closer because he had a very good relationship with my brother. Sometimes he invited me to go out with them , but I refused because of my brother , I didn’t like to get out beside him, he had the idea of looking after me!!!! No way.
But I made my mind to be natural with Marcelo, although I was getting to much involved to him. Every time he came my home, we had fun , spent hours in nice talking and I felt something special about him. My heart bet faster every time he was near. I tried to hide my feelings, specially because I didn’t believe I could have great chances with him. He is the kind of handsome man , easy-going person, talkative, intelligent and nice personality. Also, there was my conspicuous brace. My brace was a obstacle for me, specially to show my intentions. But Marcelo treat so well, he gave me indirect demonstrations that he considers me more than a friend. So, one night we were lonely, my parents were out and my brother up stairs taking a bath. We were talking when he finally made the question I was waiting for so long. He was a bit embarrassed and said: would you mind if I ask you about this brace you were? I said no, go on (of course I was nervous because I care about his opinion related to my physical appearance). So he said (I don’t remember exactly the words….): “why a pretty and so beautiful girl like you needs a brace???” I was so glad hearing his positive comments, I gave a smile and replied: I got scoliosis, an “s “curve in my spine that needs to be in control by wearing a full time brace. It must be used until my bones got maturity, so at least one more year (remember I was 16…). I also said that now I had 4 hours off the brace. He understood my explanation, listened and said that even the brace couldn’t make me bad in any way that I was a fantastic person and so on. I sounded amazing!!! I never though he got that image of me. Well, at this point I was completely shy, totally shy!!! That was first sign we could go on, I was happy.
Days went by when phone rang; there was Marcelo with an invitation for lunch. He said we could catch me at school and I choose place. I said ok. So we got met next day, 1PM in front of school.
That day I woke up had my one hour off just for a big bath. Put my school uniform, my brace and went class. I also took some extra clothes to change later before met him. Ok 1PM he was there waiting for me with a big smile. We got lunch in a restaurant near the beach, a place that I really like. We talked for hours I felt he was excited to give me a kiss, but I was nervous of course because of my brace condition. Before Marcelo, I had some fast relationships, but nothing important. We spent all afternoon together and he took me back home. In the weekend we went to the beach and there was our first kiss. Notice that time between we met each other and got really closer was 3, 4 months. Everything slowly……
Well, even being so good with him, I prayed to be free soon from my brace. To get a exactly notion of his personality I tell you about a weekend out of the city. I got 4 hours off plus my usual hour, ok, Marcelo knew that and tried to make me enjoy my time off as much as he can.
He had a important dinner outside Rio, about 2 hours away. It was a meeting from his work and he planned we go there, and then stay the rest of the week in a hotel. Ok, I knew it was important to him, to be in this dinner, his boss and friends there, so he asked my mother to let me go. She trusted him a lot and just said: go on, take care of my darling daughter( I think that care also means wear the brace..). He said he want me to be beautiful and gave a special cloth for that occasion: a black dress, simple but pretty.
Friday night he arrived at my home and I was almost done. He got in my bedroom I was seat in front of the mirror brushing my hair. I was also wearing my brace. He said: you look great, fabulous, let´s go.
We got on the road and arrived the meeting. I knew most of the people, so I didn´t felt bad to be wearing my brace, it got nice fitting with the dress he chosen. We had wonderful time there, I was experimenting the especial sensation of privacy, when you fell security, strong, proud and don´t worry about nothing. Even my brace was ok.
We found the hotel; it was some nice cottages, very cozy and sweet. As he knew my conditions of being off the brace for 4 hours, we always planned our activities. Sex was one of those activities. Marcelo liked to take out the brace, although I still feel shy. He liked to touch my body and he knew how important it was to me. Making love to him joins our souls; he is so sweet and nice and stills the same until now.
I remember that he controlled the time off the brace!!! After lovemaking, we usually felt tired and sleep. He woke me to remind me to put the brace. I refused sometimes, saying no, let´s forget it. He got responsibility enough for both. But he looked to me and said: “I love you, I care for you, I wish you best, so time over, brace on, I don´t care you wear a brace, sure you know that!!!!” So I put the brace, worn a t-shirt ( I was afraid to hurt him while sleeping ) and we sleep , like angels.
That is just a moment of my life beside my wonderful Marcelo. I thank Good to put him in my away. Well, he is someone I also admire as a human, as a person full of good qualities, kind, gentleman, sensible, a incredible support to me .He is the love of my life.