My Story: Myra

Subscribe to our Newsletter

We are building our Lupus community.

Sign up to receive updates.

New Life Outlook on FacebookSubscribe with Facebook

OR

Living... How do you make a living after you've been diagnosed with an incurable disease? How do you keep on living your life, like you have done it, before a diagnosis of 'Lupus'? How do you keep on going from a point you got off track to connect your past with the present and maybe create a future that you wanna live? So many questions are seeking for answers and you are the only one in the world who knows. As we listen deep within ourselves in moments of silence and peace we can hear what our heart is telling us. No matter what we will decide, there is no right nor wrong; there are only choices and decisions and as long as we decide to go this or that way, it is "our" way, we are destined to go.

Unfortunately we can only understand afterwards. Sometimes we don't have enough patience to listen well. We misread what seems so obvious to our own eyes. 'Lupus' what is it? An incurable disease? Another challenge or a journey that shows us how strong we are? For sure it's like a rollercoaster ride day by day. Back in 2009, when I was diagnosed with 'Lupus' I had never heard of it before. The doctor came into my room, after testing me for almost 3 weeks at hospital and said: "Myra, I am sorry to tell you but you have 'Lupus'." I didn't even understand a word, when he explained to me what 'Lupus' is. I didn't even listen. I was tied to a wheelchair back at that time because I had a very bad flare. All I wanted him to tell me was, how to 'cure' this sickness. When I asked him he said: "We cannot heal it. It's incurable. You will always have it and you have to learn to live with it."

Paralyzed physically and mentally. That's how I felt for many months and years. All I wanted to do was walk again, get out of the wheelchair and get back on stage, where I belong. At that time I was really successful in what I did, musically. Because of the flare I had to take a very long 'break'. I had to learn to deal with this sickness, my body and my thoughts to it. It took me quite a while to handle because I realized that it takes longer to get back on my feet again. I think for me that was the most horrible part. I couldn't make music anymore, I couldn't perform, I wasn't able to do anything. I was at doctors regularly, took a lot of medication, permanent tests, therapies...That was my new 'rhythm'. And somehow I didn't want to accept it. I knew there was something else inside of me asking for something bigger than this. I love freedom but this time I only felt caged.

Listen deep within ourselves in moments of silence and peace we can hear what our heart is telling us.

We cannot heal it. It's incurable. You will always have it and you have to learn to live with it.

We cannot heal it. It's incurable. You will always have it and you have to learn to live with it.

Understanding is the biggest part to handle. You need to understand for yourself and nobody else. You need to understand that you're doing this for yourself first and foremost. You need to understand that your life ain't over yet, even with an incurable disease like 'Lupus'. You need to understand that you get a second chance every single day. Tomorrow is now and now is where you at, at this very moment and nothing else counts. I am thankful for all the beauty, wonderful people, music and happiness that I can enjoy now from a very different point of view. With 'Lupus' I learned to appreciate even more than I did before. And that, believe me, that is the only thing I am thankful for, that this tricky and bad disease came across my way: I am thankful for every little tiny moment that I can experience, for every breath I can take, for every morning I wake up (with or without pain), for every inch I can 'step' forward without looking back and I am thankful for every single person who crossed my way along this journey and stood by me no matter what.

Listen to yourself carefully because your heart knows the answers and can show you a way.

Sense the positive energy everyone and everything can give you. Find motivation in everything you love and you love to do. I strongly believe that I can do a lot of 'healing' by myself. How? I surround myself with positive things only. I try to avoid negative vibes in any kind of way, even if I go to the supermarket and feel bad about something that I want to buy; I won't buy it. My heart tells me that the true 'healing' comes from inside; It lays within our heart, our soul and mind. It took me quite a while to find this way but I am glad I found it and nothing in this world will get me off this path again. I feel so much better even with pain. Maybe it's not the 100% cure, but it makes me stronger in this battle. Even though I have friends and family fighting with me, a sickness like 'Lupus' makes you a "Lone Warrior" and this loneliness no one can take away from you, so you have to fight it on your own. Seek within yourself: The peace, the silence and the love. Listen to yourself carefully because your heart knows the answers and can show you a way. And maybe tomorrow already it will be a better day...

About Myra

My Story: Myra
Myra was born in Manila (Philippines) but lives in Germany with her adoptive family. She is an "all-in-one" artist; she is a singer-songwriter, musician, director, author, DJ, sound designer, sound operator (film) and producer. Myra was diagnosed with 'Lupus' in 2009. She dedicates her arts to everyone around the world suffering from 'Lupus' and those who are facing a daily struggle because of 'invisible' circumstances. "We shall see with the heart. Only then the invisible will be exposed." ~ Myra

For World Lupus Day, May 10, 2014, Myra, a German singer and musician who was born in the Philippines, directed, wrote and produced this short film to give a very personal insight into her life with the incurable disease Lupus. In 2009 she was diagnosed with it. Since that time she's been fighting against it, everyday.

Visit Myra on Facebook

Share

We learn from each other

We all have a voice.
What's your story?

Submit your story