Acceptance < Perfection

I’ve read about my syndrome many times online, but there was nothing like being in a room full of people who looked exactly like me; this feeling has been  indescribable. My take away from the retreat this year is really this one sentiment– which is “some things can’t be taught but have to be experienced.”

For most of my life I’ve always felt a void feeling  like I never fit in or belong. For a long time I looked for that acceptance in other places. And even though I’ve read about acceptance and kindness, in different books  I could never really understand what that truly meant until I entered a room filled with acceptance and kindness. CCA is different in that way. They take the idea of acceptance and kindness and translate it into a actual experience. Experiencing first hand the genuine love , kindness and acceptance at the CCA retreat has healed my heart more than any reconstructive surgery can.

  You see sometimes people can misconstrue, thinking that if we just looked normal than all of our problems would go away; but that is so far from the truth. On behalf of all the cranio families out there, I can confidently say that we’re not always looking for perfection ( the correction of our faces) but we are looking for acceptance. To be honest, I would proudly walk around with the same crooked face, no ear and smile as long as I knew that there were others that loved and supported me despite my facial difference.

My thoughts may seem a little sporadic but that’s love sometimes; it can be a little unconventional and spontaneous. At this year retreat I experienced genuine love. It was like God was showing me through CCA his love for my difference and disability. It’s so important for spaces to be created for children and even adults with facial  difference and even disabilities because it exposes each child to an environment that celebrates who they are.

From Patient to Advocate

I can tell you about how to be a patient like I can tell you what the back of my hand looks like; and for a long time I took extra pride in being called a patient. It was sort of like wearing a badge of honor letting doctors and my fellow patients know “ I know what you’ve been through.” However, there was a slight change in my patient title when I went from being a child patient to an adult patient.  All of a sudden I found myself having to balance the roles between not only being a patient but an advocate as well.

I believe this conversation is so important among adult patients because although there are some adult that become disabled in their adulthood, there are many adult patients that carry their disabilities and disease from childhood. In my personal opinion sometimes I think our society forgets that. We can see a clear example of this  by looking at the market and seeing a wide array of programs for children with disabilities and rare diseases but very little programs for adults. It’s almost as if our presence within the medical community disappears after we turn 21.

 

When I turned 25. It was a rude awakening, because not only was I under employed but I no longer qualified to be on my parents health insurance; and for a person with a chronic health condition, health insurance is so crucial (but that is a story for another time). You stop qualifying for certain medical programs, such as medicaid and disability. The stipulations of your health condition becomes stigmatized and challenged.  Your left thinking, “ what happened to those people who thought my medical condition was sweet and inspiring. Where are those same people that fought for me, and stood up for me, and made sure I got the proper medicine and healthcare. Where are those people??? Truth is, those people are there, but they’re just not there for you as an adult.

        This was a harsh reality I came to face being an adult patient. I found myself not having to rely on my parents or medical provider to be my advocate, but now that I had a legal voice of my own… I had to become my own advocate.  So that’s what I do now, I am an Advocate! I had the opportunity to share my story of being a young woman with a disability and rare disease with the Georgia Council of Developmental Disabilities. Now although I can’t wait until the day where I’m on the floor of the Georgia State Capitol with fellow senators and governors passing legislation on the behalf of the disabled community. I’m satisfied in sharing my story first. In the words of Malala Yousafzai “ I am not a lone voice, I am the voice of many.”  My goal this year is to get my hand as dirty as possible in bringing about awareness and change in the Rare Disease and disabled community! Sometimes, being an advocate starts first with sharing your story and then after that, that’s when the real work begins.  Here is an excerpt of the piece with  with the Georgia Council of Developmental Disabilities

         “If she got to talk to a legislator directly, Rasheera would have some strong things to          say, not all of which are about direct benefits to her. To start, she takes the bus, and she notices when she gets off the bus on the main road and walks back through the neighborhood to her house, there are no sidewalks. That’s true of the majority of DeKalb County in fact. “What if you had a person who had a disability, who’s in a wheelchair, who couldn’t access MARTA Mobility, but who had to take the bus? They wouldn’t be able to do that, why? Because there are no sidewalks in DeKalb County!” Rasheera believes that should be a top priority. From there, a lot of other people’s needs are not being addressed. “Look at the VR, the VA, look at these institutions, these agencies that were created to help people with disabilities, and yet you have people in these systems who are still without funding, resources, medical care, having to wait months and months to speak with a case worker. These systems seem like they’re harming us more than helping us.” Rasheera says that even if leaders are not motivated to do it for their own benefit, they should be working on behalf of the minorities who are their constituents, and that definitely includes people with disabilities.

 

Not the Final Answer

Last week I had the privilege of speaking to over 200 hundred 6th graders about my personal journey in living with a facial difference. It was was such an AHHAMZING experience.  They had so many questions and were overall curious. It was a different experience to able to share my story with a group of people that were not only younger than me but had previously not been exposed to anyone with a craniofacial condition.  Nevertheless, there were a couple of times during the Q&A section that stood out to me. The students seemed more engaged as we talked back and forth more so than me talking at them. Anyways, one question in particular that stood out is when one girl asked “ Ms. Dopson, if you had a child born with the same condition as you, and they were contemplating suicide because they were being bullied in school would you take them out of school.”  I took a moment to respond. I really wanted to make sure that that answers I gave were authentic and honest. I’ve learned in my ongoing career that people aren’t looking for another rehearsed speech, but they really desire authenticity.

I replied to the student “ No” (I think some of the kids were a little surprised by my answer). It would seem that the expected response would be “ Yes… Yes I should remove my child from school if they were dealing with suicide due to having a facial difference.”However, even though Yes seemed like the obvious answer, it wasn’t the right answer. You see the problem wasn’t the suicidal thoughts. The issue was really  in the reasoning behind having suicidal thoughts.

 In sharing with the students my own personal journey of dealing with suicidal thoughts, I told them that my reasoning for not wanting to live was because I didn’t think I was important.   I always felt like I didn’t fit in or belong because of being so different and not having anyone around to relate too. This is a huge reality for people with facial differences and disabilities. Sometimes our differences can isolate us. However, even in the midst of that isolation, we all desire to be a part and to have a deeper meaning in life.

In Some way or another our culture has negatively stigmatized people that have differences as being void of wanting the full human experience– which is purpose. People with disabilities and differences do desire to live happy, fulfilled lives. And sometimes that can be jaded because our lives are often filled with other things such as pain, sickness, hospitals and for me surgeries.

And that’s how suicide crept in, because my life was so full of the negative I didn’t see the positive. I didn’t understand my life outside of being different. But there came a time that I had to understand although my difference filled up my life, it didn’t have to consume my life. I could live with my difference, instead of living in my difference. I had to find a way for my difference to work with me and not for me or against me.  I had to create a space where my difference and I could coincide together without clashing.

This was a hard lesson to learn but  I knew if I didn’t learn it and learn it fast, my life would pay the ultimate price.  In the rare disease community we should talk about this more. The effects on bullying on mental and emotional health and how to live with our differences rather than against them. This will be a continuation but just thought I share a little with you today! Nothing fancy or even deep but honest thoughts from a real life experience.

 

Dealing with Suicide has been a large part of my truth. I hope to talk about this more. I believe as we begin to accept difference more and find purpose and beauty in difference  the less we have to have these conversations. I’ve learned from personal experience that even though suicide seemed like the final answer, it wasn’t the sensible answer. Purpose and Life was!

 

I’m Black, I’m Female and I’m Disabled!

I’m an avid believer that Representation matters. That a person from every minority group should be present. How else can we effectively communicate the problems that every American faces. In my time in interning at the Georgia State Capitol I realized that I was not represented.

To be clear I identify  with more than one minority group. I am female, I am black and I am disabled. However, the minority group I relate to the most and that I believe transcend cultural barriers and skin tone is my disability.

When I step into most environments I see other black people and I see plenty of women.But it is pretty rare that I meet someone who is disabled or who has a facial difference. Most of my life I never cared much about being black. I mean my family was black and I was surrounded by other black people. I never cared much either in being a girl . I had a sister, cousins, my mom and a plethora of friends that were all women. However, what I did care about the most was being different. The only one in a wheelchair. The only one with a facial difference,the only one with a feeding tube. To be honest my disability has affected my life more than the color of my skin. And I guess I should be grateful because I know many who came before me, that was not the case. I think about people like my grandmother who fought during the civil rights movement how she was denied basic necessities just because the color of her skin.

Nevertheless, flashing forward 50 plus years , the issue of civil rights no longer hangs on topic of one’s skin color but it hangs on those with physical, mental, and developmental disabilities. And although it seems on the surface that many people with disabilities are treated fairly, a harsh reality remains that many are not. Many people across the spectrum of disabilities, especially Rare Disease are denied the right to basic necessity due to our country’s lack of education, care and knowledge on disability issues.

Now I know what your saying… “Rasheera, how can you make such a bold statement?” Well, I can because I live through it everyday. And I encounter people every day that have the same story as I. They are struggling financially, struggling to find care and support themselves due to their Rare Disease. So I guess the question is now…” what do we do?” ” Is there anything that can be done?” Well, Yes I believe that to  every problem there is always a solution waiting to found.

One of the solutions is Representation. While interning at the State Capitol I saw a total of 3 people that were noticeably disabled and 0 person that had a facial difference and 0 people that were in the state legislator. This discovery further affirmed the notion that in the event in which laws are that created specifically pertaining to the Disabled/ Rare Disease / Medically Fragile Community, it is imperative that we have someone from our community representing us. Why? Because someone from the inside has a better understanding and compassion more so than a person on the outside.  

You wouldn’t send a non Jewish person to speak on the behalf of Jewish people. The Face of Civil Rights movement was not Jimmy Carter, (even though he was President) ,it was Dr. Martin Luther King Jr.– why because he was a black man and he had a personal investment in seeing equal rights for all black people. The same concept applies to the Disabled Community. We have a lot of people speaking out on our behalf who have no disability or disease.  Representation matters! When there is no representation there is no voice. 

You see, the power of Representation is so powerful that no matter who is in the room as long as you have someone of your kind standing on your behalf you have a voice. Without that someone from our community there to stand in the gap and speak on our behalf, our community will continue to be silenced. We cannot let another year go by without our presence being noticed. It’s time to come out from the shadows and let our voices be heard. If you are a disabled person, have a Rare Disease, or are Considered Medically Fragile. I admonish to get to work! And if you are already doing that keep it up! Soon many will be joining you! Wherever you fill called to be, make your presence known and set a precedence, telling the world that disabled voice are here to stay.

 

Embrace the New You

I used to walk around in what seemed like garments of Low Self Esteem and Confidence. It was like I couldn’t wait to get to that place where I just felt comfortable in my own skin. Flash Forward 5 years later and I can honestly say, I FEEL GREAT!

I entitled this blog post “Embracing the New You” because after we have walked through the trenches of low self-esteem and confidence; eventually we will emerge from out of the cocoon into beautiful assured, authentic and audacious Butterflies. Coming into the fullness of who we are in Christ, being able to identify our purpose in life is one of the most exhilarating moments one can come to in life.

However, I’d be lying if I didn’t say that going into uncharted territory can be a little scary.  Anytime you take on something new, sometimes it can take awhile to adjust. Think of it as a new pair of shoes. Yes, the shoes are shiny and are a great fit, but every new pair of shoes must go through a period of breaking in .  Just as it takes time to break into new shoes, so it takes time to break into a new You.  You wouldn’t throw a new pair of shoes away just because they are a bit uncomfortable. No, you become patient and begin to wear them everyday until the leather settles in… into what once felt new and uncomfortable becomes the new normal.

  When you’re on the path of embracing a new You, it can often feel different. Like a feeling inside that’s unexplained. It’s like a that was once dim becomes gradually brighter. In embracing a new you, you begin to feel a plethora of emotions, things you’ve seldom thought before challenges you never had to face before.  And yet you don’t back down or scour in the corner draped in timidity and fear, but the new You causes a boldness to roar out of you like a lion and you begin to see yourself how God sees you, bold and Beautiful.  The New You may look and feel different, but its right, its sooo right!  

So I challenge you as I challenge myself, that as you go into the New Year, Embrace that person that you know God has called you to be. Embrace the Bold you and the Beautiful You, Embrace the Fearless You and the Confident You. I know it might be a little scary, but you’ve worked too hard to become her. You’ve traveled too far just to meet her.  She’s worth getting to know. Shed off the old and Embrace the New, the world is waiting for the amazing person who were always meant to be!

 

The Adjustment Period

I find my most effective writing comes from when I literally have to walk something out. In trying to find the words to describe this life changing experience I get stuck because all I can think about it having to adjust back to normal life after it’s all over. I believe this is an issue many people with chronic health conditions and disabilities secretly face and we should talk about it. So let’s talk about it and develop strategies to make things a little bit easier.

One of the greatest battles that an adult may face in dealing with a chronic health condition versus a child with a chronic health condition is the period of adjustment and Transition. I’ve learned over the years that every time you’re hospitalized, have surgery or become sick it changes you. You don’t think the same or look the same. Sometimes your entire world can be flipped upside down. Nevertheless, in navigating through the different battles of sickness, I learned to adopt strategies that are even now helping me to adjust and transition smoothly through each and every episode.

1. Having a support system- After surgery your body is weak you need all the support and help you can get. Having the necessary support system in place will help your healing process in the long run. You cannot do it on your own.
2. Stay Focused- Focus your attention on where you desire to be rather than where you are. Instead of looking at what you have missed or need to catch up on, or how far behind you are, focus on where you will be 2 months from now or after the recovery process has come to a close. This is vital because sometimes it can become frustrating and we can rush but patience is so important during this vulnerable time.
3. Take Small Steps- don’t rush, take your time, eat slow, allow your body and mind to naturally adjust. If it feels right do it, if not, it’s okay to say “this is too much for me right now” You know your body best, don’t let anyone else rush your recovery process.
4. Re calibrate- Every time you’re hospitalized or have surgery, or experience an episode it changes you. Your mindset will definitely change and that is okay (especially if you have had any life altering experiences related to sickness). Maximize   this time to and re-evaluate your life, relationships, career whatever it may be. You may have to change some things around, that will better your health, it’s not being selfish, its being healthy.  Sometimes the worst experiences of sickness can result in clarity of thought.
5. Allow yourself to Heal- Healing is sooo important, however, it is a process and it doesn’t happen overnight. Whatever you need to do to heal properly allow yourself to do just that without any constraints.  Whether that means, sitting down, taking a break from work, or disconnecting from social media. Allow yourself time to be made whole: Mind, Body and Spirit.

 

 

 

 

 

Looking Back: 9 years later

January 28^th 2008

I am exactly ten days away from my surgery yes, this time it will be 101. Am I nervous? A little, am I scared, Of course? I have seen so many TV shows were people have gone under the knife for cosmetic surgery or even reconstructive surgery and have come out a lot worse than when they went in. It’s only that I’m writing this letter to remind myself of who I am. So I can look back and say that this is what God has done for me. For a long time I yearned to look like the other kids. Not so that I could be accepted, but so I could accept myself. I remember going places with my mom and my sister and how whenever we would come across friends or people that we knew, they would always say to my sister “ Oh your such a pretty young lady, or “Oh you have such beautiful eyes and then they would look at me and say that I am so sweet and that I am so strong for overcoming such medical challenges ( were to me it seemed that I really didn’t have a choice but to be strong , It’s not that I don’t like being called sweet but every girl wants to be pretty; it’s in our DNA).I prayed that someone would at least say to me once that I was pretty too. I knew that I looked different.  Every day I notice when I brushed my teeth in the morning and did my hair .I look in the mirror and examine what people see. I know that one side of my face is fatter and has ugly scars. That is why I hate wearing my hair up. I know even though people might not ask, they wonder why I look the way I do or what happened to me.  If someone were to come up to me and ask me what happened to my face I would become a little apprehensive on the inside and extremely thrown off and maybe a little defensive. But I remind myself that it’s just a question and it’s not wrong to ask. I am truly excited for this surgery and yet fearful for change. I thank God for fear because it pushes me to become something I desire.  I am so much more than an unusual face?

 

July 7^th 2017

Wow, can you believe over nine years ago I wrote this letter to myself. I was 17 years old at the time undergoing my 101^st reconstructive surgery. Whew how time has passed.  I remember the day I wrote this letter. I had an old Microsoft desktop computer, I would pull it out early mornings and late nights and type away. That day in particular I was wearing a neon orange American eagle sweat shirt with multi-colored stripped pajama pants. Back then I just started getting into reading so I wasn’t as well versed as I am now. I would sit at a computer for hours and type my heart out.

This surgery in particular was a big one. For months I had gone back and forth between my dentist and oral surgeon and deciding to proceed with more reconstructive surgery. They were supposed to finish my ear. Now I say supposed too in past tense only because the surgery didn’t really go as planned. They didn’t finish my ear. We actually ran into some complications that day. However, we can talk about that later. I thought it would be monumental to write something again because I feel as if the same circumstance that led me to my 101^st surgery are similar to now my 102^nd… oh that feels so weird saying that. I got so comfortable saying 101. I guess I’ll have to adapt to 102.

Anyways times back then, when I was having my 101^st surgery were so tumultuous. All I had to hang onto was my writing and now, I still hang onto my writing but I have a totally different mindset. Although, I guess that can be expected  I mean I was 17 then and now I’m 26… an adult I might add. I’m definitely not the same person I was. However, what I like to highlight in this blog post is that most of the time we have no inclination of what the future holds for us. We have an idea and make plans but honestly we are merely blind.

Nevertheless looking back 9 years ago I couldn’t imagine my life being any better. I couldn’t imagine a more suitable journey. So much has happened since my last surgery both good and bad, but I’m so grateful that what I thought of my life then is totally different than what it is now. I wouldn’t take back any of the experiences I encountered or difficulties that I face because really they made me who I am today.

 

I’m amazed by God’s grace and hand on my life, where in past time’s I didn’t see it or realize it. The journal entry that I wrote 9 years ago is not only nostalgic but it a testament of His faithfulness and love for me. I’m eternally grateful. It’s also a testament of strength that I never knew I had and how for so long I harnessed this power within. At 17 I may have been naive and oblivious to the meaning of pain and suffering and even joy. But now at 26 I relish in it! I cherish it because here I am having yet another surgery and I’m finally using my difference to change the world. Ladies and gentlemen this is what  my Pastor tends to call a Romans 8:28 moment “ And we know that all things work together for the good of those who are called to his purpose!  So just like 101^st surgery led to even greater journey and path. I know this surgery will too.  Now don’t get me wrong I’m still a bit nervous I mean because no one enjoys having surgery but I will say I’m now confident in God’s plan for my life and looking forward to the future. Whether surgeries are included in it or not.

Birthday Lessons for 26

It’s my birthday… well technically it was Monday but Hey I  embrace the month-long birthday celebration. Especially for June Babies because we are the BEST. Anyways, I’m so glad to see another year this one has been the best one yet. Still growing, still learning, still breathing and still loving!

Anyways this year for my birthday I spent time with my family which is always nice.  I usually do a long birthday post but this year I wanted to keep it short and sweet, so I decided to share with you all some of the most valuable lessons I’ve learned in my 26 years of life. So Happy Reading and I hope these lessons that I have learned and continuing to learn you can apply them to your life as well.

1. Be Authentically You – Plain and Simple, just be You

 

2. Walking by Faith is hard at times but totally worth it–  Let go of Fear and go for it. Be Bold,  I made a vow to God a few years ago to tell the world about it, but telling your story not only takes courage but it takes Faith. I’m walking this thing out daily. I’m not perfect but I strive to be faithful

Me on my birthday a small brunch with family

 

3.  Surround yourself around people who are wise–  One of my favorite scriptures is ” Wisdom is the principle thing” You don’t have to learn things the hard way all the time. Just look to those who have were you are and where you desire to be.

 

4.  Be Kind –  Kindness goes a long

way. Like the great Maya Angelou once stated people will forget what you do for them but they wont’t forget how you made them feel.

5.  God’s Timing is Everything-

 

Don’t rush it! A wise woman once told me, when it’s your time everything will fall into place exactly as it supposed to be. Save yourself frustration and learn how to flow with the grace of God . To be honest this lesson I’m still learning but I make note of it because the more I embrace the timing of God the more I’m at peace of where I am in my life.

6.  Perseverance is a Gift- When we learn to value our struggles its easier to get through them and identify the purposes behind them.

7.  There are some things in our lives that only Christ can fulfill-.  Your relationship with Christ is everything. He makes living life sooo much better ;

8.  It’s okay to be around like minded people- . Find your tribe and you will find your support. Find them and embrace.  This also a new lesson to learn because as I get older my mind changes, who I am matures and so in every season we have to find those people who bring out the best in us,

9.  Life life to be fulfilled and not pleasured – I hope this make sense, but I look at it this way,  one is temporary and the other is eternal choose wisely.

10.   Keep Going– This is one of my life mantras.  No matter what’s happening or who is around you keeping making strides toward your  future. Don’t give up! Before you know the very thing you once prayed for will be the very thing you will physically embrace.

#BirthdayLessonsfor26

#June5th 

The Gift of Perseverance

 One of the most valuable life lessons I’ve learned in being born a person with a disability and chronic illness is the gift of Perseverance. Sometime our road can get really sticky and tough, but somehow we managed to get through it. Despite the physical pain and the mental pressure. We continuously overcome! I once heard someone tell me that “I am stronger than I think” and at that time I didn’t take those words to be true because the pain was so real and it seemed as if the burden of my difference was heavier than what I was even willing to bare.  However, looking back in the midst of another battle… I get it now.  Like a runner running a race my endurance is kicking in and I remember that I have the God given gift of perseverance.  So today just as that special someone told me I was much stronger than I think, I want to encourage you that so are you!  You are not strong because you overcame but you are strong because you choose to win!

Remember don’t let your Difference hinder you but let it change the World!

#TheGiftofPerseverance

#beautywithatwist

#Celebrateddifferences

What Should I say

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This is often the question many people ask when they encounter a person that may have a facial difference or disability. Well, first thing first before I tell you what to say. I want to tell you what not to do. And that is stare!!! Let me say that again “DO NOT STARE!”  It’s okay to look because I know my difference is noticeable, but don’t stare, its rude and it’s a major pet peeve of mine. I rather you ask the question “what happened to your face than to stare” but I know it can be hard looking at a person with a facial difference.

It can be hard to come across a person with a severe disability or difference. And some may ask why it is so hard. Well, to answer your question it is so hard because difference is not normal. If everyone in the world looked like me having a crooked face and no ear that would be the new normal. And people with straight face would be considered different. So you’re not a bad person if your reaction is not immediately acceptance. In the famous words of David Roche “It’s not the first look that counts… it is what happens after that.”

So help you with your first question “What do I say”—Sometimes you may not have to say anything off the back. It would be weird if I went up to someone and asked them “Why there are eyes blue? “I don’t know that person and that is inappropriate.  I’d spend my time trying to get to know the person first, and once a connection has been established then feel free to ask away. I personally think the reason why people are so eager to want to ask question is because they are looking for a place of balance and normalization. And so they stare and ask questions to see if that different person is like them. Being different and having a disabilities have come with in the past negative demeaning stigmas. People automatically assume, you’re slow, or mentally challenged, but, that may not be the case. All different people are not disabled and all disabled people are not different.

All I am saying is that people come in all shapes in sizes and colors, however, don’t get stuck on not knowing what to say. Kindness speaks louder than anything else.

When you meet a different person or disabled person remember to 1. Look at them, don’t stare or act like you don’t notice.  2 . Find a commonality, even though they may be different from you what do you share in common. 4. Look at them again and see them for who they really are , they are not their difference. 5. And always remember it never hurts to just be Kind!