Through my eyes…
There are many times, especially when I meet new individuals or even when I am having coffee with my closest friend, that I find myself searching for answers. How am I going to explain this? It’s one of the hardest questions I need to answer, and to this day my answers are always difficult to produce.
When you sit back and you have time to reflect, you may think about your life. This one life you have. You think about why this battle chose you and how every single day for the rest of your life, you’re going to be fighting. That’s hard to accept, it’s one of the hardest things to accept. So let me try and explain to you, the best way I know how, what this battle really is.
Slowly, I was starting to notice differences as I was getting older. A feeling in the pit of my stomach; something was missing and I might never be able to replace it. Something was happening and nobody could tell me what. A code that nobody seemed to be able to crack. Then there are the thoughts of what am I going to tell you? What happens when I tell you who I am? Would you turn your back on me?
I wasn’t diagnosed until a couple of years ago. There were many tests being done over the span of half a decade before I had a confirmed answer. I remember every single test I took. I couldn’t tell you what I had for dinner two days ago, but I could tell you the tests that started almost ten years ago. I remember the minutes, the seconds after being told what I had. I remember the hardest eight hour drive home. I had a diagnosis that I couldn’t understand.
Suddenly, I felt like I had lost time. My social skills, my emotions and energy level were changing. I couldn’t understand why I was feeling what I felt. I was suddenly frightened and confused. Everything felt out of control. Even though it’s a progressive disease, things do happen overnight. It’s not like I slowly feel myself growing weaker. I fight every ounce I can until one day, I wake up and realize my body cannot take the fight anymore. So all I can do is let it go. Running, wearing my favorite wedges, dancing to my favorite song, walking the three blocks to the mail box…When you lose something, it has an impact. Whether it is on your confidence or your self-esteem.
Perhaps you see me from afar, or from across the table and think, “Things were taken away, parts of her that will never be felt again.” But everything was not taken from me. There are aspects of me that I am so grateful to have. Possessions that I will be forever grateful for. Something much stronger than muscles. I have learned to laugh, to take my pain and play with it. Although I can’t walk in my wedges anymore, I still keep them. I occasionally put them on, walk around my room and take them right off before I fall flat on my butt. They remind me of what was. How I enjoyed my life before all of this happened. And how even now, I can still enjoy my sparkly flats just as much.
Ivana was born in Sanski Most, Bosnia & Herzegovina, but moved to Canada at the age of three. 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.