Saying it out loud

I kept it a secret for a couple of days. Before I told anyone of my suspicions I needed to be more sure. I was probably in a bit of denial and also questioning what it all meant for me. I continued trying to walk on my heels. I tried running up my stairs to see if I could do it. I kept getting down on to the floor and then trying to get back up again. All of it confirmed my fear that this was something I was going to have to acknowledge.

I can't remember who I told first. I remember being nervous to tell Brad. He had been around my family enough to know that this was going to be a major life change. I didn't even know if when we got married I even mentioned the possibility that I could end up with muscular dystrophy. It wasn't something that he had signed up for. We were really just starting our life and our family. Olivia was barely a few months old and our lives were being altered. I felt like it wasn't fair to him. To be honest, I don't really remember his reaction. I tried to downplay what I was feeling and what ultimately it would mean for us. It was easier to just mention it in passing and ignore the emotions that were under the surface.

My mom was the next person that I told. I called her and said, "do you think it's a bad sign that I can't walk on my heels?" I remember like it was yesterday that her answer was simply, "probably." She was so casual about it. Hearing her confirm my fears brought my emotions to the surface. At this time, my definition of the disease was my mom. She couldn't walk up stairs at all. She used a cane to walk on flat surfaces, if they were short distances. If it was any lengthy distance, she had to use a power wheelchair. She needed help to get up from a chair. She needed help to get up off the toilet. She needed help to get into and out of a shower if it wasn't her shower at home. For all of these and many other reasons I was surprised at the casualness of her response. My emotional response had surprised her. She told me that when she was diagnosed she didn't cry at all. I wondered how that could be when her dad had been her example and his health was so bad. We never really got into the emotion of it too much. I wish we had now. But as I said, it's easier to just ignore the emotions, especially when talking about it could make you even more emotional. I always try to avoid those situations, but I do think that is a flaw. We miss some life changing conversations and even deeper relationships when we avoid the uncomfortable.

I was never great at having emotional conversations with my dad so I let my mom tell him. But he did call me soon after he found out. He told me that he was sorry and how much he loved me. Hearing anything like that from my dad always made me cry so this conversation was a lost cause.  I just remember how lucky I felt to have such loving parents and the example that they were to me. I was nervous that I would not handle this disease as graciously as my mom did. She was so sick all of the time and she still pressed on. I was scared about the unknown. What would it mean for me and how would Brad handle it? If I had known how great of a husband he would be and how much support and help he would give me I wouldn't have been so scared. I have the best husband that I could ask for. He reminds me so much of how my dad was with my mom. I have been so blessed.

The last person that I told was my older sister, Natalie. I actually had to confirm that with her, because I new there was no way I didn't tell her, but I knew that I didn't tell my other siblings for a while. I don't remember telling her or what her reaction was. But the reason I knew I must have told her right away is that she has always been one of my best friends. We are less than 14 months apart in age. We couldn't be more different in personality but we've always been very close and she has always been there for me. There is nothing that I can keep from her. She is a rock for me and I love her so much. 

Those were the only people that I told. How do you tell people that you have a debilitating disease? There was nothing that anyone could do. It would have only made people feel bad or sad for me. I asked my mom if I should go to the doctor. She told me that there wasn't really any point. All they would do is confirm it through painful testing and that once I had a diagnosis there was nothing that they could do for me. There was so little that was known about our type of muscular dystrophy. So that was where I left it and went on with life, without anyone else really knowing for two more years.