This blog is about my life with a chronic and progressive illness. I hope to share a realistic look on life as a medically complex person to help raise awareness and let others know that they are not alone.
"Be kinder than necessary, for everyone you meet is facing some type of battle." - T.H. Thompson
The Anti-Defamation League has put out an amazing video called "Imagine a World Without Hate" and I want to share it with you. I don't need to say much about it except that the people in this video have all been killed because of people who hated them for one reason or another. Just think of how different the world would be if they were still here. Imagine how amazing the world would be if hate did not exist in this world. It would be amazing. So lets take a stand and help make this world just a little less hateful.
One of my favorite movies to watch during the Holiday season is The Grinch Who Stole Christmas that stars Jim Carrey. It's a funny movie with several wonderful messages. Some people may only see the message that you get near the end of the movie, and that is the message that Christmas isn't about the gifts or the presents. It's about being with the family and enjoying the time together.
But the messages I loved are the more subtle ones. In the book, How The Grinch Stole Christmas you never get the back story to the Grinch and why he hates Christmas. But in this movie, you are told about how he was constantly bullied as a child. The Grinch represents every child who has ever been laughed at, and teased. He was made fun of for being green, for having facial hair at the age of eight, and overall - for being different. I'll never forget the scene in the movie where the kids make fun of him for trying to shave and the teacher starts to laugh as well. I don't agree with the Grinch becoming bitter towards the Who people because they teased him... but I completely understand why he would.
I've heard people use the phrase, "Oh don't be such a Grinch!" and it usually means, don't be so moody or have more fun. But after really thinking about it, why is being a Grinch wrong? Yes he was rude and he put up a wall to block his heart - afraid of getting hurt once more. But is it wrong to be different like he was? Aren't we all different? Isn't us being different what makes this world so interesting?
Cindy, the sweet little girl quotes The Book of Who (which is basically their book of laws), "No matter how different a Who may appear, he will always be greeted with Holiday cheer." This simple quote speaks volumes for how we should treat each other, even those we deem "different." No matter how different someone is, they should always be treated with the same acceptance and compassion we would give others who we don't think are so different. This Christmas, lets remember that everyone deserves to be treated with love and compassion. This Christmas, lets remember that Jesus himself was once thought of as weird and different... to the point of where people killed him on a cross, laughing at him... taunting him... bullying him. So why would we do that to anyone else? Hope and Love, Becca
On the 20th of June, I along with my family will be boarding a plane and headed for Florida! Because I was born with a lung disease called Pulmonary Hypertension - we are going to an annual conference that takes place every 2 years and this year it is in Florida! I went to the last conference and I loved it! I got to meet people who had the same thing as me, talk about our experiences and make great friends. (Or in the PH community they are called PHriends.) This conference to me is a lot like heart camp. We are all dealing with the same thing. We are all understanding and accepting of one another. We may not see each other very often, but when we meet up at the next conference it is like nothing has changed and we are still great friends.
Along with sitting in on some interesting topics (such as how to live with a low salt diet, which I need to start doing again) I myself will be part of a panel that talks about creativity as a form of coping; specifically writing/blogging. I will also be attending a support group meeting for teens with PH and then later that night I will be going to an after party for PH patients who are between the ages of 20 - 30 to meet, have and just talk. Get to be normal, regular, young adults. And to add to the excitement, my family and I will be visiting Disney World!
I know it will be hot and sweaty in Florida - but I am so excited! I can't wait for it! I'll make sure to take lots of pictures and share this amazing, uplifting and inspiration event with you all when I get back!
I write blog entries for Adult Congenital Heart Association and I wanted to share with you what I wrote for this month's entry. Here it is:
As all of you know, having a congenital heart defect means you have a scar—or a few of them. For the majority of my life, I haven’t felt too self-conscious about my scar. I like to thank the heart camp I’ve gone to since the age of eight for helping in that field. However, I won’t lie—when I started high school and my scar from my surgery in 6th grade was still bright pink and bumpy, I was self-conscious about it. I even went as far as to get special make up to cover it up.
I just didn’t feel like me. I felt like I was lying, or covering up my defect. Granted, my heart condition isn’t all of who I am, but it is part of who I am. If I take away that small part of me, I am no longer me. So with that in mind, I started to feel more comfortable with my scar. I wear v-neck shirts and scoop necks. I have no problem with my scar or my body.
But last weekend I was suddenly pulled back to my state of mind when I was a freshman in high school and feeling self-conscious about my body. I was invited to a BBQ for the organization that I give speeches for about my experiences with bullying. I was excited to meet the other speakers and learn who I would be working with. But then I started to freak myself out.
I started to worry that all the girls there would be in these tiny bikinis and have perfect skin. I worried and freaked myself out that these people would look perfect while I sat there with a huge, ugly scar on my chest. And I didn’t know any of them either, how was I supposed to make friends with people who looked perfect when I looked… like me?
Thankfully, I was pleasantly surprised. I forgot that there are people from all walks of life who also give speeches for this organization. Some talk about their past with eating disorders because they hated their bodies at one point too. There was another girl who had gotten bullied so badly she dropped out of high school and got her GED instead. There was another girl who wore the scars she got from suicide attempts on her arm.
I had convinced myself that I would be the only one who had insecurities about her body and herself. But I couldn’t have been further from wrong. The BBQ went great, and I really like the people that I work with. I know that they, of all people, will be understanding, kind and caring about how I feel and what I’ve gone through.
When I got home, my mom asked me if anyone had asked about my scar and why I had it. I smiled and shook my head and told her, “Mom, there were two girls who had cuts all over their arms. They don’t care about the scars. Maybe they didn’t even notice mine.” I told her with a grin. I have never felt more in my element than with this group of people besides when I had gone to heart camp. Like camp, these people and I had a connection and we understood one another.
But for those of you who, like me at times, have self-conscious thoughts about your scars—don’t. Your scar does not define you as a person. Yes, it is part of your life, but it is not your whole life. So don’t let it stop you from living the rest of your life. My scar doesn’t hold me back from wearing bathing suits and going swimming. I don’t let my scar hold me back from wearing a lower-cut shirt.
If you want people to forget you have a scar, then you start forgetting it first. I act like a normal, healthy, outgoing teen. That’s what people see me as because I don’t let my scar or my defect represent me. I represent me. Start letting your personality represent you and not your scar.
Every year since about Freshman year of high school I have gone to my older sister's 6th grade class and I have spoken to her students about bullying and my experience with it as I grew up. I tell them about the time in 3rd grade when a girl threatened to punch another hole into my heart, the time in 6th grade when a street performer in San Francisco made fun of me for having to sit in a stroller because I was too weak to walk and I tell them about the time in 8th grade when these girls locked me in a closet at a birthday party and refused to let out or even give me my inhaler. I explain to the kids that words hurt and effect people long past the time that the words have been said. I tell them that they have the power to either positively influence someone's life or negatively. I also told them that if they see bullying they need to stand up against it. If they sit there and let it happen - they are just as bad as the bully. I explained to them that they will never ever regret doing the right thing. At the end of it all, several of the girls came up to hug me and share their story with me. I hope that by doing these talks I can help to minimize how many kids get bullied and I hope that for those who are bullied - they now know that they are not alone and that it does get better.
Hi guys,I want to start this blog post explaining a movie that came out in the 90's that was based off of a book. The movie and book were called Pay It Forward. The whole idea stemmed from a little boy for a school assignment on how they would change or make the word better. This little boy decided that he would do something nice for another person. And when that person asked him 'how can I repay you?' he would tell them, 'Just do something nice for three other people and ask them to do the same for you.' And then those people would do the same to three new people and it would continue, until every person in the world has done something kind and nice for at least three people. At www.bekindstepup.org they have taken this idea but added another element to it. Instead of just having someone's words to remind you to be kind, you would have a bracelet. Here is how it works:
Get a bracelet
See an act of kindness or someone “stepping up”
Pass the bracelet on
Each bracelet has it's own special code. If you log onto the website you can track the bracelet and share your story of what you did to earn or get the bracelet passed onto you. It's a great way to share stories of kindness and encourage others to "step up". I've included a few photos of the bracelets and the small card you are supposed to give to the other person when you hand off the bracelet. Along with the official promo video for the organization.
I strongly encourage you all to "step up" and "be kind" to one another. Buy a bracelet and pass on this wonderful idea of doing the right thing. Click here for the link to this amazing website that has teamed up with Ben's Bells to spread kindness.
Love and Hope,
Becca
Today I finished my driving school and I passed the skill part of the test. My driving instructor was a nice man, very sociable and friendly but there were a few things he said that really made me stop and think. We stopped to get ice cream at Dairy Queen and he just went on and on about how Obama and his Socialists are trying to take over the world and turn America into a communist state. I decided in some instances not to share my opinion with, or to question him; because I do need my license. But there were times when I did say something, very nicely of course and with respect.
For instance, he was sitting there talking about how he thinks it’s a bad idea that the Obama Care requires everyone to have medical insurance. Now I myself don’t know how I feel about that. But I did tell him about my situation and how without government help, I wouldn’t have medication to live. I told him about how one of my pills costs 5,000 dollars a month. Just ONE prescription. He couldn’t believe it. He ended up agreeing that some people (like me) do need help because we can’t help that we are sick and can’t find a job that will give us medical insurance.
He also made a few other comments that made me extremely uncomfortable. We were talking about traveling and some how we landed on the subject of San Francisco; he had never been there before. I told him that it was a great city and I loved it. His comment was: “Well aren’t there a bunch of gays there?” It took me by surprise and I wasn’t sure how to respond. I shrugged and said: “I never noticed.” He shakes his head and says, “I don’t know why there are so many gays there.” So I turned to him and said, “Well maybe it’s because they can blend in a bit easier and people in big cities like San Francisco and New York aren’t as judgmental.” He didn’t have anything to say to that; that was Friday. Today he was talking about how he was driving with a boy who was gay and the boy told him that he would never go to church because a minister at a church he went to told him he was condemned to hell. So the man told the boy that God doesn’t hate the person, but he hates the sin. I have to give him props for not going on and on about how sinful the boy was but I wasn’t about to go and tell him that I didn’t think being gay was a sin. So I told him that I have a problem with any type of religion that says God hates certain people because of how they are, how they were born or who they love. I told him that I can’t understand people who use God, who is all about LOVE; and use Him to validate their hatred towards a person or people. He agreed and the subject ended there.
Another comment he made was about a boy who he took driving, he told me this yesterday. The boy was Autistic and clearly should not have been driving. He told me how frustrated he got with the boy and how annoying it was to have to drive with him. So I turned to him and said, “Imagine how he feels. Knowing he is trying his best but can’t drive. You have to remember, and it’s hard to because he acts so normal; but you have to remember he has a learning disability.” He nodded and said he knew that but it just got so aggravating. Today he told me that he doesn’t think the boy wants to drive. He said that if the boy wanted to drive, he would be practicing and getting better. I shook my head and said, “I believe he wants to drive. I think with every fiber of his being he wants to be normal and be able to do something everyone else does. He sees people everyday that can read, write and do other things he can’t; so he wants to drive because it is something everyone else does. Sadly, with his learning disability he just may not be able to.” He nodded and told me that he hadn’t even thought about it that way before. We ended my driving lesson soon after that; and no worries, I DID pass the test; which was a relief. He told me he would keep me in his prayers and that I was extremely smart for my age. But I don’t think it has anything to do with being smart, it has everything to do with acceptance and being understanding; even towards though who are different.
So about 2 weeks ago I went up to California with my mom and dad for a doctor appointment. Things are going good, nothing new except in about a year or two I will need a new battery in my pacemaker/defibulator. Other than that the only change is that I have some irregular heart beats but they aren't too worried about it. At Lucille Packard Children's Hospital they have a school inside their hospital so patients that are either in the hospital or too sick to go to school can go to school there. They also allow siblings of patients to go to school there as well. It is part of the California public school system and has 1st grade through 12th grade. This school also hosts a prom for all their students, not just high school; but everyone. The families of patients are allowed to come and stay as well; and even some hospital staff drop by to say hi and see what is going on. Every year they pick a new theme for the prom and this year it was 'Traveling Around The World' The decorations were amazing! They made the Golden GateBridge, the pyramids, the EiffelTower and many more other landmarks for you to take a picture by. All the helpers were dressed up as either pilots or in traditional clothing from different countries. Along with dancing, food and crafts they also had gambling! (I must say, I am pretty good at Roulette and Black Jack!) But what I love most about this prom is that no one is left out or judged. During my appointment they asked me to put on a Halter Monitor, which is a portable heart monitor. I wore it for 24 hours and I was able to take it off right before I went to the prom. I wouldn't have liked wearing it to the prom because it is itchy and TOTALLY did not go with my dress; but I know that if I had to, I would've much rather worn it to this prom than the prom at my school. The prom at my school while it was fun and I got to go with my friends, it was a snobby fake event where people judged one another based off of how they looked, what they wore and who they came with as their date. This prom wasn't like that at all. You could sit down and talk to anyone without feeling like they were judging you or making fun of you. This prom was for everyone. Whether you came in a wheelchair, with crutches’ or with an IV stuck in your arm; you were welcomed and loved for who you are. Wouldn't it be great if life was more like the Lucille Packard Prom? I think so. Love, Becca
I have some AMAZING news to share with you all! I am SOOOOO excited, I can barely contain it! He-he.
Well as you all know, I am getting closer and closer to graduation every minute! Well this week I had an Award Ceremony for the graduating students who are receiving awards, scholarships and other recognitions. Well I was told by my old Junior English teacher that she had nominated me for ‘A Person of Character’ award. I figured that since they only picked one girl and one boy out of the whole senior class, I wouldn’t get it. Well I was invited to the award ceremony where they gave me the ‘A Person of Character’ award! Dr. Courson, our principal said this before announcing my name; “They believe in the inherent dignity of all people and treat everyone with respect even those whose ideas & ideologies evoke strong disagreement. They have a strong sense of right and wrong and have the courage and willpower to do the right thing even when it is unpleasant, costly or goes against what others are doing.” I am truly honored to be given this award. It means so very much to me.
Yesterday I got called down to the College and CarreerCenter at our school. It is place you go for information on colleges, scholarships, volunteering programs etc. The lady there told me that along with that award I got a scholarship! The honor of being recognized as a kind and caring person was AMAZING to begin with, but then to find out I got a scholarship to help pay for college made me almost cry! The moment I got into the car that day I told my mom and she had me call dad right away! I can barely contain how happy I am for this wonderful gift that I have been given!
My sister Regan called me later that night to congratulate me. I told her though that it wasn’t all my doing. I have had some wonderful teachers. My mom and my dad from a young age have taught me about acceptance, being kind, understanding and loving towards all people. I would not be the same person I am today without the guidance of my family. My mom and dad instilled in me the values of love and acceptance. I would still try to be as kind and understanding as I could be and stand up for what I believe in, even if I did not get an award; because that is the right thing to do and that was how I was raised. My mom always says “You do something nice because it is nice, not so you can get recognized for it.” So to all of you who are fighting the good fight, don’t give up just because you think no one recognizes your efforts. I do. And the people you positively impact in your everyday life do. We are making a difference, award or no award.
Love,
Becca
Below is a video that my mom took while I got my award!
Sorry I haven't written in a while, I have been really busy! Easter was good, we played a lot of games and we put up a big water slide in the backyard. It was a lot of fun! I also had my Senior Prom! That was also amazing! Prom for me, when I was younger; was something that I never thought I'd get to see. I struggled to live my whole life, but now I am finally living! We had dinner at my house where my dad cooked steaks and my siblings served my friends and I dinner. It was absolutely wonderful! For most teens Prom is fun and cool, but to me; it was a milestone. Infect my whole Senior year has been a milestone for me. I was not supposed to make it this far, but I have. I believe in miracles and I know that they happen. I want to thank everyone who has helped me along on my journey. You all mean so much to me and I would not be where I am today without your love, support and care. Thank you! On another note, every year I go to my sister's 6th grade class and talk to them about acceptance, kindness, love and not being so judgmental and mean to each other. I bring my oxygen tank, my pills, and inhalers, breathing treatment, pictures of me after surgery and an Ipod. (I perform a song in Sign Language to them) I talk to them about my health and how some day I will need a heart-lung transplant. I talk about not being able to play outside when it was hot out, I talk about never being picked for the soccer team at recess and I talk about how disability helped me find my two favorite hobbies; Sign Language and writing. I also talk to them about how even though being sick is hard on both my spirit and my body; it can and has been just as hard; if not harder, on me emotionally. I explain to them that it's hard to miss 2 or 3 months of school to begin with, but to come back and not have kids be as understanding as they could've been was even harder. I talked about how kids would give me dirty looks in the hallways of 8th grade when I had to wear oxygen at school. I talked about all the comments about my scar that I have gotten this year. I told them about a man in San Francisco who called me a spoiled brat for sitting in a stroller in 6th grade because I was too sick to walk. I explained to them that you can never know someone's story endless you get to know them and ask questions; but be sensitive about it. I invited the kids to ask me questions, whether about my health, a time when I was bullied or for advice. While I stood there in front of the three 6th grade classes, I felt empowered. These kids were opening up to me. A girl asked me what I would die if someone made fun of the way I dressed, and I could tell that she was asking what she should do. A girl raised her hand to tell me that the shirt I was wearing fit perfectly with my message. I was wearing a shirt that said 'It's what's on the inside that counts.' "You are showing us to look inside the person and not just on the outside." She hit it right on the head. I had explained to them a lot of people have a hard time when it comes to understanding my health because I look so healthy. I wanted them to realize that appearances can be and are often times deceiving. There was a time during my talk with the kids when I told them that there wa no excuse for bullying. I told them that nothing ever made it right to hurt someone. I then asked them how many of them had been picked on at least once in their life time, everyone raised their hands. "So if you all know the pain of what it feels like to be made fun and laughed at, why do we go and cause that same pain on someone else?" I asked them. At the end of my presentation I perform a song to Sign Language to them. In year's past I have done the song 'Don't Laugh At Me.' This year I did 'Loser Like Me.' from the cast of Glee. Both songs are about bullying, accepting people for who they are and loving one another despite our differences. I always look forward to the end of year because I know that I am going back to my sister's 6th grade where I can share my story and teach kids how to be more understanding of those people who are different. I feel that by me going into these classrooms, I am letting the kids who are picked on and bullied that there is someone out there who accepts them for who they are.
Before I left to go back to school, I had a girl come up to me and ask if she could hug me. I told her yes and soon a few other girls came up to hug me as well, several of them being on the bigger side. I had connected with them. I was made fun of for my looks and I have a feeling that they have had a tough time with theirs. I also had a girl come up to me and show me a scar she had on her arm and how hard it was when people made comments about it to her. My little sister is also in my sister's 6th grade class and she has a friend whose mom e-mailed my mom to tell me how touched her daughter was by my presentation that day. She went on to say that her daughter had no idea about all the things I had been through and how inspired she was by me. It made me smile to know that even if I hadn't changed all of the minds in that classroom, I had at least changed one and that is a wonderful place to start. Be the change you want to see in the world. Love, Becca
Hi Everyone, I just got off of the phone with a friend that I have known since first grade, we will call him Fred. We started to debate politics (bad idea, I know.) and my friend made it clear that he does not agree with Obama. He explained to me: "Obama decided that he would just start printing out more money, which doesn't help our economy; instead it just makes things worse because it brings down the value of the dollar. Did he not take econ? Is he retarded?"
While we had been debating a while on the health care bill, and I explained to him that he has no idea what its like to be sick and not be able to get the necessary medications needed in order to even live; let alone be able to work. My friend, I believe came to some realization about the health care system and how it does need something to be done (we just disagree on ways to get there.). When I kindly asked him not to use the word retard, he refused to see my reasoning behind it.
"The word retard means to be slow or slow down. So if I say 'I'm retarding my car.' it does not mean it in a mean way." He explained to me, in which I replied. "Correct, but you and the rest of society don't use the word retard in that sense. You use it in the sense of dumb, stupid, moronic and idiotic which all have a negative connotation, therefor the word retard has a negative meaning and is hurtful." "But Becca, I didn't mean it in a bad. I was simply asking if he was retarded." "You could've said 'Does he have a learning disability? Is he mentally handicapped?'" I tried to explain to my friend. "If you were to take out the word retard and replace it with another word, what word would you have used?" "Stupid." "My point exactly." I explained to Fred softly. "But its not a bad word. The meaning behind a word makes the word bad." Fred said to me. "Would you use the 'N-Word' Or chink? What about faggot?" I asked him (Excuse my language and I mean no offense by what I said.). "The word nigger was actually based off of where the person was from." My friend tried to trip me up.
(Not sure if he was correct about the fact he presented, I decided that for arguments sake and incase he was right, I would go with it.) "Alright, but then the connotation was changed to be a degrading and racist one. So, do you use that word?" I asked him once more. "No." "Exact same reason you shouldn't use the word retard. While the origin of the word may not have been offensive in the beginning, it is now offensive and demeaning." I told my friend. I then said to him after a few moments of silence; "Fred, I know that you are a kind, caring, loving and accepting human being; I just want your words to reflect the type of person I know that you are."
Fred didn't say much after that, except that he thinks America has bigger and more important problems than the connotation behind words. And while I agree that there are life and death matters that are going on at this very moment, I explained to him that people can multi-task. We can help get the country back on it's feet while being loving, kind and accepting towards those who are different.
I grew up in a time where the nice kids out numbered the mean kids. I grew up in a time (not too long ago.) where elementary school was a fun place where everyone was friends with everyone. It seems now though, that my little sister does not live in a time where kids are nice to one another anymore.
It has occured to me how mean kids can be and how mean they really are. It's moved beyond making fun of kids for glasses. Instead its clique of girls or boys who pick on anyone just because they are "different." While I expect it from high schoolers who think they know it all, it is heartbreaking to me to hear that it is happening in elementary school where kids are so impressionable at their young age.
When I grew up there were kids who would make comments about me or make fun of me. But my friends out numbered the bullies. But I realize that there are kids who have no friends to lean on because people in general (and the kids) have become so judgemental of one another. There is no acceptance or understanding for those who are different. I feel that one of the reasons I'm here is so I can make a change in the world. And I think one of the changes I want to make is how people treat one another. From age 2 all the way up age 100. No one should ever treat another humanbeing as if their feelings don't matter. No one should ever treat someone else as less than or un-worthy. No one is better than another person. No one.
I want to ask all the parents out there to sit down with their kids, wether they are 5 or 17. Talk to them about bullying. Tell them how much it hurts people and tell them that they need to stand up to those who bully others. Tell them that if they see a kid who is "different" that they need to be kind to that person. There is a girl at my school who everyone makes fun of. She is a bit odd and I think maybe she has some emotional problems due to her homelife and what not. But I always say hi to her and give her a smile because I may be the one person that day who is kind to her. I may be the one person who gives her a smile and lets her know that I accept her and care for her. Whenever I see this girl I remember this quote: "Be kinder than ncessary for everyone you meet is facing some type of battle." I don't know what goes on in other peopel's lives, so I try to be as understanding and loving of people as I can be.
To the kids who are reading this blog. . . be kind to one another. Is it truly that hard to accept others for who they are? What gives you the right to cause someone else pain? How would you feel if someone was talking horribly about you, or being cruel to you? 'Do unto others as you would have them do unto you.'
Be Kind and Understanding, Becca
P.S. I'd like to ask you guys to share a story about bullying. Could be one that happened to you or someone you know. Share the story and get awarness out there that bullying needs to stop. We can make a difference, one story at a time.
My name is Becca and I am 25 years old. I was born with Tretralogy of Fallot, Pulmonary Atresia and Pulmonary Hypertension. Some day, I will need a heart-lung transplant.
I hope that with this blog I can help others know that they are not alone through whatever struggles they may face and I hope to inspire others to stand up and make a positive difference in this world.