Our time on this earth.

A relative of someone that my dad knows was recently diagnosed with cancer and given three weeks to live. 3 weeks. When my dad told me this, it stopped me in my tracks. Even though I don’t know this person I kept thinking about them and how I cannot even fathom what it would feel like to be given that news. 3 weeks left on this earth. I can’t get over it. It got me to thinking, as most things do. It reminds me of Tim McGraw’s song with lyrics that go like this “this might really be the real end? How’s it hit you when you get that kind of news?” What would you do if you got that news? 3 weeks to live.

The thing is, no one knows when their time on this earth will be up, but we live like we will live forever. We think we have so much time ahead of us but that’s clearly not the case. We just don’t know how much time we have left but we tend to take our lives for granted and I am not going to lie and say that I don’t sometimes. We should take a moment every day and be thankful to have that day. Quoting another song here, this one is by Paul Brandt (Canadian country singer) “We’re not promised tomorrow. Like vapour these days here are fading away”. The song is called Live Now. We should all be living in the moment, in the present day because tomorrow is not a guarantee for anyone, ever. 

It also got me to thinking about living with Moebius. I have let it hold me back in the past from doing some of the things that I wanted out of life.. But I have realized that life is too short for that. It’s too short to have insecurities and weaknesses that get in our way of really living. If you need help to get through things, ask for help. It’s okay to seek help from therapy, psychologists, friends, anything or anyone that will help you live the best life that you can, the life that you want.

So, if you were given a limited time to live what would you do? Would you quit your job and travel to places that you’ve always wanted to see? Would you spend it with the ones you love? Would you regret not living the life that you wanted? You would have to live the years that you thought you had left in three weeks. It boggles my mind to think about because I never really have before. There’s so much that I want to accomplish in my life. I truly believe that we are all living the lives that we are for a reason. We are all here for a reason. It’s not just by chance that we are here. I really believe, like I have said before, that my purpose for living and my reason for being on this earth living with a rare syndrome is to change the way people with disabilities are perceived and to raise awareness of not only Moebius Syndrome but all other disabilities and physical differences. I want to spread tolerance and acceptance. We all have a purpose. Look deep inside yourself and you will find yours.People my age, we are the next generation and we have the power to change the world for the better. It’s like the saying “be the change you want to see in the world”. If there’s something that you see, an injustice or something wrong with the world that you are living in, you have the power to change it. It sounds like a cliche but I really believe that we all have the power to change the world and make it such a better place. There’s so much wrong with the world that we live in today but I have faith that in the years to come, we will make it better. We have to. I think that instead of living like we have 40, 50, 60 years left in our lives, we should live every day like it could be our last. Love who you love, see the places that you want to see, don’t be so constrained by money, change someone’s life for the better, read the books that you want to read, take naps when you want to nap, don’t let your job rule your life. Just live. I need to start doing the same. There is just so much to accomplish in life and we don’t know how much time we have to accomplish these things. I want to be able to look back on life and say wow, I am really happy. I’m proud of the things that I did and people were changed for the better. We all have purpose and we all have meaning. Live your life. And start living now!


One thought on “Our time on this earth.

  1. Hi,

    My name is Marta I work with EURORDIS (european organisation for rare diseases). I’m the coordinator of a project called RareConnect. It’s an online platform that offers communities for specific diseases. Now we have 42 active communities and we expect to launch 2 more soon. One of them is for the Moebius Syndrome. The community was launched in 2011 partnered with 6 Moebius patient associations from all over the world.

    We would like if you could share one of your blog posts on the community. You could only copy and paste it and then we’ll translated into 5 languages.

    It would be great to collaborate with to to raise awareness about Moebius Syndrome

    How does it sound for you?
    This is my email: marta [dot] campabadal [arroba] eurordis [dot] org



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