Seven Things I’ve learned since being diagnosed
Being diagnosed with a disorder is hard. You have this hole in your heart and you know it’s going to be there forever. You can’t go back to how it was before. You can’t even imagine that life anymore. It’s been taken away, along with everything else this disorder carries.
The first signs of muscular dystrophy came when I was 13 years old and I wasn’t diagnosed till my early twenties. What I’ve learned in between have become a handful of lessons. A life full of trial and error, defeat and hope.
- Don’t hide from the world. When I was first going through the early stages of this progressive disorder, I would just walk through a crowd and hope nobody saw my swollen heart. I hoped they couldn’t hear it screaming silently within me. Going out was stressful. My body was changing and nobody knew it but me. I wanted to ignore it and pretend it wasn’t there, but time proved that impossible. I lost myself for a while. I can’t lie about that. On the outside, I didn’t appear any different; but on the inside I was struggling. But now I want nothing more than to be seen and for my voice to be heard. I’ve learned not to fight with my differences. I’ve learned to make my life as beautiful as possible and to always have an imagination. There is no sense in trying to run or hide from your problems. There is no point in shutting people out. Give yourself life, even with all the weight that you carry.
- Nothing lasts forever. This lesson is both a great one, but a hard one to accept. You think you are invincible and that you’ll live forever. You drink and smoke, knowing it’s just a little bit of fun. Completely harmless. You press on the gas a little harder, you take your dirt bike over jumps ten times your size. Learning that nothing lasts forever makes me feel like my future is only becoming smaller. That I will have less to look forward to and my battles are just beginning. In the same breath, it’s what pushes me harder than anything else. Knowing that it’s only going to get harder and if I don’t do it now, then when?
- There is always time to be kind. As I got older, my nights out turned into nights in, and the mornings I once used to sleep through are now gone. I found I wanted to be more productive in my days, and I wanted to learn as much as I could about myself and everything around me. I volunteered more and worked with many different organizations to gain a little more perspective. I spent my days helping cancer patients pick out wigs and my nights writing for the local newspaper and not for profit organizations, like Muscular Dystrophy Canada. It’s so rewarding helping others. Smiling at a stranger, learning someone’s name. So simple. But it speaks so loudly to the heart.
- Take it one day at a time. I had binders full of my plans for the future. The places I wanted to travel, the cities I wanted to live in, where I wanted to go to school, what classes I wanted to take, and the goals I would accomplish in five, ten years. This was before my life became a tangled mess. Now I know this moment is all I have. Yesterday is gone; tomorrow is unknown. All I have is right now – today. I can’t think about my future because it’s so unknown and that’s okay.
- Think positive. Positive thinking has been linked to stronger immunity and less stress. Before, at least once a day I would think to myself, “I can’t do this.” At least once. But I started to change my way of thinking and would instead pull myself into something positive. “I’m going to be okay.” Now I have to say that to myself a couple times a day. And it makes a difference.
- Appreciate. Simple, and straight to the point. You don’t know what you have until it’s gone. Take my word for it.
- And finally, I learned to go on. Being diagnosed taught me a lot about who I am. It set my priorities straight and I learned to not waste time and focus on the important things in life. Try and make the most out of the life you’ve been given. I understand. I waited all my life for something. When it finally found me, it almost killed me.
Ivana was born in Sanski Most, Bosnia & Herzegovina but moved to Canada at the age of 3. She was diagnosed with LGMD a few years ago and it has forever changed her life. She is a regular contributor and her blogs will be everything she has learned along the way and what she continues to learn today. Read Ivana’s personal blog at: www.loveivana.com