*Sorry this post is going to be slightly long, but I wanted to be honest and share some of my hardships and struggles with you. It’s a very challenging journey, but I am getting there 🙂
Furthermore, I’ve not written up this blog in order to seek sympathy from anyone of you viewing this but, for the purpose of letting you all be well informed about what I am going to be talking about and I only hope that this page will not only be a place for me to share my experience and progress with you all, but also a place for others to learn from my experience and know that everything ‘different’ about them or anyone else, is a blessing and that’s what makes you special and unique. I’ve decided to try out blogging so that my friends and family can check out my progress. Sometimes all I need to do is just sit here behind a computer screen and vent or just kind of talk to… someone who is willing to listen. And sometimes, nobody is really willing to actually take the time and read a long post from some person who is either whining or complaining. And I totally get that. This post will be a little “whiny” but it will also be reflective and something that I can look back and learn from. Well, this has never been a “story” I ever really wanted to elaborate on but throughout my journey, people have been asking me to write. Write about my experiences- what I’ve been through (It will also be a good way for me to look back and remember this journey in years to come) and I can’t believe the time has come for me to share an experience about myself growing up with something I’ve had since I was born. I mean, it’s a major part of my life, so I can’t just ignore it? Not like I always thought I could but I thought I’d introduce myself in a proper way and that sharing mine would help and inform you all. I know it’s hard for people to open up and it was in no way easy for me to make the decision to post so much of my life online for the world to see yet, I will try to be as open and realistic about this journey.
On 06.04.1999- I was born with cleft lip/palate, a birth defect that affects the nose, lip, speech and jaw. For those who don’t know about this birth defect. It is a birth defect that occurs when a baby’s lip and palate (roof of your mouth) does not develop properly and the tissues don’t fuse during pregnancy hence, the baby is born with an opening in the lip (upper palate) causing a gap between the nostrils and the upper lip (google it up, it’s pretty interesting). Fixing this issue requires many, many surgeries. I had my first cleft reconstructive surgery when I was about 6 weeks old- This surgery was to sew my lips together. My next surgery came around when I was about 16 months old- This surgery was made to close my upper palate. At the age of 2 and 11, I had my bone grafting surgery – where they took a piece of my hip bone and placed it into the gums of my upper lip (I have two stitches on both sides of my hipbone- 3 inches stitch on the left side and 7 inch on the right). Rest surgeries that I’ve had were lip repair, nasal floor repair and nose revision reconstructive surgery. Till now, I’ve had nearly 11 surgeries altogether to fix this birth defect and still have a while to go before all my surgeries of all stages are completed (my rhinoplasty (nose) surgery and lip surgery is due next year mostly and few revision surgeries to go) Now, most of you know that I recently underwent my twelfth surgery on 6th July which was the double jaw surgery aka ‘Orthognathic Jaw Surgery’ to fix my jaw deformity. (surgically performed between the age of 17-18 when the jaw stops growing). The physical, emotional, mental pain and suffering you go through from having a disfigurement, especially a facial disfigurement, is un-explainable. It’s not something you can cover up or hide with makeup, it’s there for everyone to see and judge. There have been times when I’m extremely frustrated and sad about getting these surgeries done. And there have been times when I’m extremely excited and just overwhelmingly positive. Mixed emotions really. This is something I’ve had in my whole teenage life so to say it’s been a burden, is an understatement. Sure, it’s something that I’ll answer questions about, something that I’ll share with people.
Why did I go under a scalpel? – Due to this birth defect, I have a severe underbite (which means my bottom jaw grows more than my upper jaw). A “normal” bite means that the top jaw sits in front of the bottom jaw. However, people who are born with this birth defect are more likely to have jaw growth issues and will be born with an ‘underbite’ and since my lower jaw comes out farther than my upper jaw, in the surgery, they had to cut and remove the bone from my lower jaw so that it could be pushed back. They also had to cut the upper jaw and push it forward to make sure that my bite closes properly. It’s extremely awful (as you can imagine) both jaws will be broken and screws will be placed all around both jaws to hold it in its new posture.
(check out these vids. I promise, it’s not gross).
Some people can get that fixed when they are younger using special headgear’s however, for my case, that wasn’t possible. I almost talked myself out a million times. I always used to feel insecure around many people but, never did I really express the feeling nor did I ever think of getting a “plastic surgery” done to my face. In fact, this is an orthodontic + orthognathic procedure, this surgery shouldn’t be confused with plastic surgery or cosmetic surgery. (there’s a huge difference). But even then, if it’s plastic surgery, just know that- You’re not going under to come out looking like a ‘barbie’, you’re going to look like you but with subtle changes in your appearance due to improvements in your face. As far as about people like me? We would rather have been born without a cleft however, we have no choice in the matter as the only way of fixing this birth defect is by encountering a surgery and have to put up with the countless operations and pain just so that we
can could be accepted a bit more by those who judges a person by how they look. And, I’m sure people who have the same problem as me can agree on this, the psychological effects of having a “pretty messed up jaw” or not having a proper bite/smile are extremely enormous. It had made me face challenges that not all kids/teens would normally have like depression, anxiety, and boatload of insecurities. Learning to cope with these things was and still is the hardest thing I’ve ever had to do. I know from personal experience and I was incredibly paranoid and self-conscious about my appearance especially with my side profile, when it’s most noticed. Other people can consider this as ‘vain’, however, how I look at it- why shouldn’t I be able to have a normal jaw structure like the majority of the population? There is no shame in wanting to feel good about yourself in every aspect of your life, jaws included!
Being a teenager is hard enough on its own. But, being a teenager born with a cleft lip and palate obviously has its own sets of frustrations and concerns. It is integral to who I am because it has influenced every aspect of my childhood. Having a perfect smile is something most of you people do without a thought but, I spent the first 16 years of my life unable to do just that. It hasn’t been easy for me as I didn’t know anyone else with a cleft, which made going through it a bit of a struggle since I couldn’t relate with anyone else. Words can not express how un-natural my profile felt pre surgery. Everything just felt tense and strained and it really did show- Even when I was in a great mood, my face at rest did not display the way I truly felt. I looked angry or worried all the time. It was so frustrating! Like, it’s certainly tough living your childhood with a facial abnormality and you do your best to hide it or act like it is not there. I still remember looking into the mirror and staring at the scars on my lip. That was really the only thing I saw. I did not see my nose or even how uneven my top lip was, all I saw was the scars. I wasn’t upset- I just noticed them. When I was about six years old, I used to get bullied like you wouldn’t believe growing up and I always questioned myself “Why me out of everyone!?” I mean, when you’re little, there are a lot of things people say that can stick with you for the rest of your life and you tend to keep that in your heart as you get older. There were times when kids/friends in school would ask what happened to my face or what was wrong, why I needed so many surgeries and sometimes, I really would get offended. I mean there were always those people that came up to me and openly asked “what happened to your lips?” and I would be in that awkward moment where I was not sure if i’d want to explain the whole thing or just say “Well, I just do” and not have to deal with it.
As I grew into my teenage years, I felt different but not pretty and I’m sure everyone has something that makes them feel different from others. People would tell me that I am pretty but I didn’t always feel that way (If I was pretty, why would people be asking about me?). At the age of 13- I entered secondary school and with maturity, I did realize that I was a little different than everyone else and since then, I had started thinking about my cleft a bit more but never let it define who I was. I was not the girl with the cleft lip or even the girl with the funny nose. I was just Niharika Jain. The cleft has been just one part of me. However, all the teasing did impact me profoundly, but it also helped shape me into the person I am today. For that I am grateful. Having a cleft has been a big deal to me, but it has also been one of the most life changing things I’ve ever got to experience. And it’s something rare, something that not everyone can go through. I mean it is not as life altering and devastating as people without facial differences might think as I could still live a normal life. It’s true that, I lived out my 16 years with an obvious birth defect, right smack dab in the middle of my face- My nose was flat, the scars on my lips were bad, my voice was difficult to understand at times, yet I can honestly say I had a pretty normal childhood/teenhood. In fact, I feel sorry for anyone who felt the need to put an individual down because of something that’s different about them and for something they can’t help and don’t have control over? That’s just pure evil. I think people forget to empathize at times, if they see something different in someone, the odd few will instantly pass a remark or insult you, forgetting the fact that you’re most definitely aware of your “difference” yourself.
I still remember this day when I had mentioned about myself to a friend of mine about getting a surgery to my face and that friend reacted by saying, “I think you’re just fine, why would you go for a surgery?!” which obviously irritated me because trust me, it’s hard to understand what it’s like to go through and live with something like this, it’s almost impossible to put it in words. Saying “Oh sure, you don’t even need a surgery!” will only irritate them. (If they didn’t need it, they wouldn’t be going through with it- trust me). I would rather say- You won’t feel and see things the same way we do. It’s something that none other than a “clefty” would understand and go through. But, I’m just puzzled. How can some people tell I have a cleft and others not? People who didn’t understand would often stare at me or make fun of me but, of course, there were some people I know who could tell I have a cleft. Either because they know what it is, know someone with one, or they’ll just say, “Oh…I noticed something but couldn’t tell what it was” or “You just look different”. I actually get these responses most often which confuses me but, I never get offended by these, of course. When people ask me now about my cleft, I tell them confidently because I know that they want to understand what it’s like to have one and why I look the way I do. When kids ask, or stare, or point, they shouldn’t get into trouble for it. I don’t mind getting asked why I am the way I am (NOT ANYMORE, AT LEAST). It’s normal. It’s a way of maturing and growing up. Let them stare. Let them ask questions. Instead of them being afraid of people who are different, maybe they’ll learn to accept others just a little better.
Frankly speaking, being born with this birth defect has actually been a positive experience in some ways even though it didn’t always seem like it because- A life full of surgeries is all I’ve ever known. It was hard at times and I’ve admitted that before. I had to go through a lot to fix it and it isn’t always easy, wondering what decisions to make and having all sorts of dental appliances and facial surgeries that most people don’t have to endure. There were times I was made fun of for it, and I’ve gone through some struggles with my self image because I didn’t look exactly the same as everyone else but, that doesn’t mean- I can’t enjoy my life. That doesn’t mean- my entire life is going to suck. That doesn’t mean- I don’t want to live. In fact, I’ll live with this experience till the day I die.
I like to live by the quote:
“Life is 10% what happens and 90% how you react to it”.
I have been very fortunate to have met many ages who were born with this defect. The adults have eased my fears about the future, serving as role models for me. The kids have given me a chance to be a role model myself, which is another positive result of having this condition. Fears, worries and concerns will inevitably creep up but, they can be overcome with a positive outlook and by talking it in particular.
When I think of myself, I see the gifts that I have been given- my patience, the so-so physical features that I like about myself and the beautiful life I have been blessed with. The people most important to me in my life, my really close and trustworthy friends, my family are the people I’ve allowed to know all about me. I can’t help but thank God for actually getting me through this all. If it weren’t for God, my wonderful family (seriously, this has been as difficult for them as it has been for me, I’m sure of it), and my support team of friends, I don’t think I could have done it. I think I would have given up and just let it all be how it was. Saying “yes” to these past few surgeries has been the most difficult thing I’ve ever had to do but I know that in the long run, I’ll be glad I did. I’ll be able to look back at this time with no regrets or “what-if’s”. Moreover, I have learned how important it is not to worry about what people see and don’t see, or even what they think of what they see. This is who I am and there are obviously people who like me this way. I don’t know if I should include this birth defect with the good, the bad, or both. It’s a part of what defines me….but only a part. For all of you who have encouraged me and have stayed by my side over the years- THANK YOU!
So again, my main purpose of starting this blog was to not only share my own experiences or kind of ‘vent’ but I’ve also done it to help other people who have had to deal with or currently going through the same kind of experiences that I’ve had to deal with. This is for all those people who are going through something similar. For me, it’s taken years to be confident but I’m not saying I wasn’t confident prior to this “transformation”. I was! Just that, these experiences and surgeries have made me more empathetic, strong and unique. If you ever come to any situation regarding your self image, you get stared at or rather bullied- Just ignore and smile back. There are many people in this world who struggle with self-image. In today’s generation, struggling with self-image is a big deal to happen with most but you shouldn’t be in a state where you can’t accept yourself (at all??). Let’s say you’re unhappy with the way you look and you want to change it by going under knifes- it has to be done because YOU want it, not because of what other people are going to say or think about it. You’re probably scared that your friends will judge you? I would say- Let them. Almost everyone in the world judges people, I have judged people for sure. Allow being judged. This is something that can really be hard but don’t care what other people think because only you know how far you’ve come. Remember- Being bullied only makes you a stronger person that has the drive to accomplish a lot and prove everyone wrong. You must have strong beliefs, faith and a solid ground confidence in yourself otherwise, you will always have a doubt in your mind somewhere. Don’t ever let things affect you as that’ll only end you up in great depression. Depression is something that can really break you down but at the end of the day, you have to remember that these hard times are the days that will make you even more stronger. You will face a hard time for sure but with time, it all gets better. Nothing lasts forever and everything happens for a reason.
“The bad days make you realize what a good day is”.
If you never had any bad day, you will never have that sense of accomplishment.
Just to update you all- I am at my SECOND WEEK post-surgery. I am currently in Taiwan. Two weeks since Jaw Surgery! Wow! I’m so grateful to be at this point. Few days ago, I had an appointment with my OS. He checked out everything from my wounds inside my mouth, my oral hygiene to my profile and said it looked perfect. Although, I couldn’t notice the difference, my surgeon was quite happy to see my progress. He mentioned that my wounds inside were healing perfectly but I just needed to be more diligent with continuing to use the oxyjet and rinsing out my mouth every hour to prevent ANY infection. (As after jaw surgery, oral hygiene becomes a task since you’re unable to open your mouth wide). But yeah, the worst part of the appointment was the stretching of the jaws. This was the first time I had actually attempted to open it up wide and close down on my new bite position. I am so swollen and there is not much movement yet but he insisted it was fine and kept saying “just a little bit wider, you can do it” arghhh I freaked out.. I know he knows what I should be capable of doing at this stage of recovery, but I was fearful about my jaw accidentally popping or just tearing (lol). I’ve got a long way to go but definitely feel like the worst of recovery is long behind me so I continue to progress slowly every day. So last night was horrible! The pain was intense, my head and TMJ’s (Temporomandibular joint syndrome) were throbbing giving me an ear ache, jaws ached and slightly clicked when I swallowed, lips and chin twitched and tingled! I guess this was all to be expected being only two weeks out from jaw surgery! Sleep was almost impossible. After jaw surgery, you’re asked to sleep with your head elevated using two soft pillows. BUT my most comfortable sleeping position was lying on my stomach. Since I was restricted to that sleeping position, I kept getting really hot, pushing my blankets off, then would get really cold again! Did anyone else experience this? Also every time I went to close my eyes, I felt my head spinning and generally just felt sick! I thought the night would never end! I woke up at 5am this morning and totally freaked out about the way I was sleeping. My jaw was kind of sore and I suddenly had a horrible thought that maybe I shouldn’t be sleeping down on my side with my cheek to the pillow. What if it shifts around and moving out of position?!?? That sure scared me. Even later, sometimes a big change will happen and scare me. For instance, parts of my face are still completely numb, including my chin, part of my cheeks (the area closest to my nose and eyes) and lower lip. My bottom lip and chin are still numb and swollen so I can’t actually feel myself applying lip balm and moisturizing cream! They are very dry still and crackly. Closing my lips together does not feel completely natural yet, because they are still tight and slightly numb. I have been wearing my ice packs (ice is suppose to keep the swelling from getting worse) and heat pads (heat is suppose to increase the blood flow to the area and help the swelling go down) 24/7 so hopefully those have helped! I have to say, the pain that I have been experiencing only comes to a high peak during the evening. The tingling starts, the stinging and burning lips and chin, the weird twitches from the muscles around my face, the aching feeling, they all begin to radiate around 6 pm and continue on throughout the night. During the day its just not as bad. But, the fears and worries that I experience everyday is something that nobody can prepare you for, but there is comfort when you know there is a whole community of people who have undergone similar things, telling you that everything you’re feeling and everything you’re experiencing is normal. I was scared and I was tired of the pain and just the overall experience of going through surgery and then having to recover from it. Did I mention that I am unable to talk? Yep. I can’t talk how normal people do haha. The best I can do is murmur and even in that, it’s hard to understand what I am saying so I just do sign actions. Not being able to talk is really really uncomfortable and it suffocated me at times and tbh, I was just really tired and wanted to get rid of it all after which I realized that are definitely going to be even more hard times coming my way and I realized that I might just be a little scared but tbh, my parents have been taking care of me and I can’t be thankful enough for what they’ve been doing for me not only the past 14 days, but the past 17 years of my life. They’ve been so supportive during every phase of my life. Be it my surgeries, my education, personal life, or anything in general. I really can’t thank them enough. Before surgery, I would often think to myself, “OK, I’m never going to be as pretty or have flawless skin like other girls. I have to accept that”. What I desperately wanted as an outcome of this surgery was to look and feel normal (and of course have a functioning bite). I want to be able to get dressed up and feel good about myself and not have to constantly compare myself to others, wishing I looked different. I need to start loving me for who I am and what I look like, flaws and all. Anyways I believe this surgery WILL improve my self esteem and even though it will take some time to get used to my “new” face, I have to say that I really am 100% glad I got it done, I finally have a normal functioning bite and a better balanced profile 🙂 I’m so appreciative to everyone who I’ve met along the way. It really makes me realize how much good there is in the world and that strangers can actually turn into good friends.
I am not a very patient person, and this journey of recovery is all about being patient so this has been my biggest challenge… WAITING WAITING WAITING to see the improvements and real results happen over time…. but in the mean time, it is a struggle to feel and look semi presentable.
But guess what? Today, I had visited the Danshui Beach in Taipei. It was indeed a beautiful place. I loved it so much. Tbh, as much as I enjoy going out, the same way I hate it when I have to wear the face mask as you can see in the photo below. (It’s to protect myself from the pollution and stuff). That’s all I have for today.