Rare disease day

Thousands of people suffer from different diseases and some of them are very rare. Thousands sounds like a huge number, but compared to the seven billion people on earth, it’s almost nothing. Even for the doctors it’s hard to identify all diseases, especially the ones that only occur to, let's say, 1 of 50,000 people. Maybe the doctors see such a patient once in a lifetime, and so don’t recognize the disease, don’t even think it could be that, because it’s so rare.  And every disease can be a bit different, or two persons who have the same and get the same treatment, react differently. It is not only about the symptoms, as every person is different, every disease can be different, too. Because they are rare, they are also not many experts, who know about them and how to handle them the best.

The patients don’t only suffer from their diseases, most of them need many years and see many doctors until they figure out what they actually have. Often they get many misdiagnoses and wrong treatment, that doesn’t help them at all, maybe makes it even worse. Some patients use the internet; try to find other people who have the same symptoms. Not only the patients suffer, also their families do They who wanna help, but simply can’t. Even many people can’t be cured, it’s better for them to handle and live with their disease when they know about it. What do I have? What could be the reason I have that? Is there a chance of healing? Is there anyone out there who has the same and so knows how I feel? That’s another reason why the internet is so important for them. They wanna find people to talk to, they need to feel that they are not alone. As much as these people love the support of their families, they can’t really understand what they are going through.

Today is the 6th international Rare Disease Day. I wanted to write about that, because it can happen to all of us. Of course I don’t wish that anyone has to go through this, and no one wants to think about it, but we all can be in such a situation one day. So, I dedicate this post to everyone who has such a rare disease. I guess it must be hard, and I would love to read your story. So if you have a disease and wanna write about it, or you know somebody who's suffering from a rare disease, and wanna tell me about it, I’d really love to know. You can also use the contact form if you want to. I hope that the people who haven’t figured out what they actually have, they soon will, because I know it’s easier to live with it, when you know your “enemy”. And it’s also easier to find the treatment that can cure you, or at least help you to handle the disease better.

Watch here the Official Rare Disease Day Video:

For more go to http://www.rarediseaseday.org/

You are not alone

I am a TV fanatic, which means that I watch plenty of TV shows like sitcoms, drama, and crime series. As a writer I'm especially interested in all these stories. Because of the less time that I currently have - mostly because of two projects I'm working on and as my exams start next week, I have a few things to learn, too - I have two days of the week which I spend watching all my shows. I love to see the characters, the way they are involved in the story and develop every time a little bit. Sometimes I even compare them to each other. When I saw the new episode of Guys with Kids in which Marny and Gary think about who would be the best couple to take care of their kids if they both die, it reminded me of the Simpsons' episode the week before. Homer doesn't put a hairdryer into a chicken to heat it up - but it could have been him - but he and Marge are trapped after they were in the middle of a hurricane and a house fell on them. Which in my mind stands for the whole world is crashing down onto them, and sometimes even the craziest things can occur, maybe even those you're not at all aware of. So when Homer and Marge are in the house but can't go out, they think about who could take care of Bart, Lisa and Maggie, if something would happen to them. You see, same main topic on both shows, and indeed a very important thought.

Life is like the water of a river - it never stands still
picture by Wolfgang Staudt

But it's not only these two shows that I compared to other shows. In fact, every episode last week was about changes.  Like Abed on Community - he is afraid when he thinks about having his last year at Greendale. He doesn't like changes and he hopes to stay in touch with his friends he met there. Also Jake on Touch is not a fan of changes, especially not when they are not meant to happen. For him and his Dad started in season 2 a new mission, they are now in L.A., having a new last name and trying to find a girl and solve the big puzzle.

Even in Seattle Grace Mery West hospital, which means on Grey's Anatomy, there are lots of changes. After the plane crash the hospital has big money problems, and even though Dr. Cahill wants to help and has found a buyer for the hospital and therefore a solution for the lack of money, the doctors don't want that change. We will see if the plane-crash victims stick together and agree with Callie's plan to rescue the hospital without any change, but by using their own money to buy it. In Shonda Rhimes' other show, Scandal, Olivia Pope has to solve the probably biggest problem in her career. Fitz finds out that he wasn't elected to be the president, and James wants to reveal that, but didn't because he loves Cyrus, who works for Fitz, and he knows that the career of his husband would find an end and James have to raise their kid on his own. So while watching the show, you, the viewer, think about that change. What would happen if that all would come out? Of course this would mean the end of the show, so the only question I had: how do they get out of this?

But not enough changes: Barney on How I Met Your Mother wants to find out everything about the man Robin was obsessed with and sang about in her song, when she was a Canadian popstar. A few seasons ago, that wouldn't have been a thing Barney would do. So he had changed, too, and figured that out in last week's episode. On The Big Bang Theory Sheldon isn't ready to move in with Amy, nor wants Penny to move in with Leonard. So they all have to deal with a change that will come soon in their future, and lets them think about it. On Pretty Little Liars Spencer drives everyone crazy, after she figured out that her boyfriend Toby is part of the A-Team, which follows her and her friends since Allisson's death. Spencer changed a lot, as she is not that person anymore who has everything under control, makes exact plans and knows what she's doing. Also the 2 Broke Girls are not safe from changes. They find out that Andy moved, and Caroline doesn't like the idea being single for the rest of her life, while Max is told having a husband and kids in the future.

picture by MMcDonough

Changes come to all of us sooner or later, and sometimes we just think about possible changes in our future. Changes can scare us, when we think about what could happen. When we have to take a decision we ask ourselves 'what if...?' But in the end it's like what Abed find out at the end of the Community episode: a few years ago he didn't know the people he is now afraid of to lose. Back then going to the community college was the change. He was afraid what might happen, but he did it anyway. He went to the college, he met these people. And he doesn't regret that. It's normal being afraid of the future, but the present, right here and right now, was the future of yesterday. We all wanna stay in our comfort zone, we wanna do the things we know with the people we know and love. But we should never be afraid of changes, because they can be good. They can bring people in your life, or let you realize the truth of someone or something. Changes are sometimes surprises, happen coincidentaly, sometimes they are not that good, but in the end it's the changes that challenge us, that let us grow, and make us the people we are. 

The past is the present's teacher to improve the future.

When something in our life is constant, then it's the change. Life is never standing still, the earth keeps revolving. So when you are afraid of the future, afraid you could be alone some day, you are not and you will never be. As one door closes, another one will open.

A rollercoaster ride

It makes fun. Everyone who ever did it knows that. Maybe some had to struggle with themselves until they did it and some did it without thinking. But both of them are proud of themselves afterwards. Some are screaming, some are smiling. Some love the speed of it, that it goes up and down so fast. It is fascinating and most guys want to take a second ride after the first and another and another.

But what about the ride we got for free? What about our own life? It goes up and down all the time. We can’t get out, we can’t go back, we go forward, always. But we are our own engine. We have to find the strength for getting up after we fell. Some are exhausted, and when it goes down and down and down like a free fall, some might have lost this strength.

But keep in mind, when you wanna go up, you have to go down first. It is like a bird who wants to fly: first it falls, but then it goes up flying. Some might see you falling, others see you flying. Like always: it’s the perspective. You can’t go up all the time. If the down wouldn’t exist, the up wouldn’t, too. So everything would just be a straight road. No curves, no acclivities, no slopes. Just a straight road. And now think about such a rollercoaster ride. Wouldn’t it be less fun?

Of course it can be hard, when you feel like being stuck in a deep hole. But you have to find the right tools, and take all our strength and will, and maybe you fail the first time or the second, but you will find your way out. And then you will be happy that you did it. But if you give up, it’s like leaving the rollercoaster in the middle of the ride and you want to enjoy the full ride, won’t you?