Tuesday, 29 October 2013

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.

Sunday, 27 October 2013

Blogging, oh blogging, why am I blogging?!

So I've had the idea for a while to start blogging. For some reason when I go to start there is something keeping me from doing it. Maybe it's the expectation that once I start, I can't stop. Too much pressure. Maybe I don't want to take the time to do it? I'm not sure. But here I finally go.

I called this blog my falls and my walls because I fall. Unfortunately it is a big part of this disease but I learn so much from those falls. It allows me to see the best in people, even strangers, as they show me of their kindness. The walls part is everything that happens in my house that shows me that I have a full and blessed life.  

The purpose for this blog is for my kids. Hopefully none of them have to live with the struggles that I do, but the possibility is there. Hopefully, I will be around to tell them how I dealt with different struggles, but the possibility is there that I won't. So this is for them. I decided to do it in blog form in case anyone else is interested in my story. I love, and receive strength, from reading other people's blogs, especially when they are enduring trials with strength. So for any of those many people, that I love, that ever ask me how I'm doing, this is also for you. I will try as best as I can to be as honest as I can with my feelings. This is not to draw any sympathy but so that this really may be a help to anyone else reading this.

Because I've been putting this off so long, I have a lot of story to catch up on. This post may be painfully long. Sorry. Maybe I'll split it into two. The fear with that is that I'll never blog again and only half of my story will be told! It will be like the recipe book that my mom gave me when I was married. Most of the recipes are useless. There are ingredients listed but nothing else. Do you mix them all together? Do you layer them? Do you cook it? How hot? The name of the dish sounds delicious but that's about all you get! Anyway, I need to get on with it!

Starting at the beginning:

Growing up I was aware that something was different with my mom. The first memory that I have of my mom having Muscular Dystrophy is when I was in grade four. All of a sudden she was wearing braces on her legs. The only thing going through my mind at the time was that my Grandpa Steed had Muscular Dystrophy and that he was always sick. I had no memory of my Grandpa as a healthy person. This made me extremely fearful for my mom. I remember crying and telling her that I didn't want her to die. I didn't want her to be sick like Grandpa. As time passed she slowly got worse, and I continued to worry, but it became a part of life. There would be times where something would happen physically to highlight the fact that her health was deteriorating, and it would bring up those feelings of fear, but they would pass and life would continue.

I remember asking my mom how she knew that she had MD? She would say that when she went to exercise class they would walk on their heels around the gym and all of the sudden she wasn't able to do it. She couldn't keep her toes lifted off the ground. She had drop foot. From there I guess she just knew. My mom is an incredible lady. She endured so much more than I would ever want to see anyone endure. Some would say my mom WAS an incredible lady, but even though she has passed away, I know that she still lives and watches over me. There is so much story that I could tell of her, and one day I hope to. I do think it's important to document the past, even though I am terrible at it, but the story that I am telling here is my story. Undoubtedly her story will intertwine with mine because she was and is such a huge part of my life. Because I knew how she first suspected that she had MD I grew up always trying to walk on my heels, and when I could do it there was a sense of relief.

Time went on and life was good. I had moved away from home to go to dental hygiene school in Edmonton. I met Brad and we were married and after a while we were pregnant. I didn't have a terrible pregnancy but by the end I was definitely feeling tired, weak, and heavy. But aren't all of those feelings normal at the end of pregnancy? I'm pretty sure they are. Olivia was born and the battle of the bulge began. Let me just say that this was a battle that I'd fought all my life, but I knew I needed to get the baby weight off. So we bought an exercise bike and I started to pedal. As I continued working out and losing a bit of the weight, I noticed that the pedaling wasn't really getting all that much easier. We lived in a two story starter house with laundry in the basement. The two flights of stairs that I had to climb to take the laundry upstairs were also not getting easier. As I would sit on the floor of our living room changing a diaper or playing with Olivia, getting up was not as easy as I thought it should be. Fear crept in to the back of my mind. I would repeatedly try to get up off the floor wondering if it was in my head. Could I do it without using my hands pushing on my legs? I knew what my mom had lived with for as long as I remembered and what had ultimately taken my grandpa's life. I remember standing in my kitchen and battling in my mind whether or not I should try walking on my heels. It may sound dumb to place so much emphasis on such a simple task but it represented the journey that my mom had to take. I hadn't told Brad anything yet. He's a bit of a worrier and there seemed no point in making him worry if it was all in my head. So in my kitchen, in our first house in Leduc, I attempted to walk on my heels. That is where my journey with this disease began.