What it's like to live with a progressive neuromuscular disease

Sunday, August 21, 2011


It’s been a while.

Life has been a whirlwind and I haven’t really had a moment to take it all in. I am grateful for the chaos though, as it keeps me too busy to get stuck inside my head for too long…

Today marks the beginning of an exciting new chapter in my life. After eight years of marriage and with our two beautiful healthy boys, my husband and I moved into our very first home. And in so many ways, it is all just so perfect- sunny and bright little Spanish-style, a nice quiet street, shops and restaurants near by and friendly neighbors with young kids all around us.
But as hard as I’ve tried to just stay with the joy, this stubborn, scary, nagging little voice has been haunting me. And it’s been getting louder. I’ve done my best to ignore it until now, but I’m afraid that what it’s been saying all along may be true.
You see, we spent many months looking for a house. There were some basic requirements, such as it having to be a one-story and on the smaller side, for obvious reasons. But in the neighborhood where we were looking, it seemed that we couldn’t avoid a house with just a few steps to the front door and a few steps to the backyard. And all of them had layouts that included a hallway of sorts. At a certain point I realized that I had to accept that I wasn’t going to find everything I wanted in one house.
Since I wear leg braces every day now, I had only ever gone to open houses with them on, partially because I didn’t want to accept/believe that something as silly and minor as a couple of steps could come between me and my dream or worse, my husband’s dream. So, we found this lovely little house. Just what we were looking for. And I convinced myself that the steps in the front and the back would be manageable. I decided that if I ever got to the wheelchair phase, then I could easily put ramps in. And if not, then I would just get railings installed on the sides of the stairs. And because of the long hallway, I would just keep my leg braces on all day and night, despite the callouses and the sore spots. That was my logical, rational mind talking.
And here I am. Our first night. I have been on my feet all day, moving since early this morning. It’s 9:30pm and I have yet to take off my sneakers and leg braces. I am too afraid. Too afraid of how my body may (poorly) navigate through this beautiful new house and too afraid of how I will then handle it emotionally. Though I have tried to prepare myself for this moment for months- talking myself through the possible problems and potential solutions- for now I want to just live in the fantasy/ denial just a little bit longer: what if it’s not as big of a deal as I thought? What if I won’t trip on the slight elevation in the floor between the tile and our new hardwood floors? What if I actually will be able to carry a bag of groceries through the front door by myself without losing my balance?
Eventually, I will have to stop stalling, get off the computer and enter into my new life, but not because I want to. Mostly because I have no other choice. As anyone with HIBM can tell you, it’s the initial feelings of loss and shock that come with navigating new territory that are the hardest, but eventually we find a way to adjust.
I am still amazed by how I can feel so extremely happy and grateful and blessed while simultaneously feeling so angry and sad and scared. How could I have looked forward to this day with as much passion as dread? How can I be so lucky to get to own a new home, be in love with my husband, have these two smiling little faces to wake up to and be surrounded by such wonderful family and friends AND have this nasty disease that continues to rear its ugly head in my most joyous moments?
I try not to question it.
I try to hold onto both extremes in one hand and try not to interfere with process that takes over in my mind and heart.
And most of all, I try to be in touch with the truth that some things are beyond the physical…

Please visit the NDF website for more information about HIBM and how you can help fund a cure

Neuromuscular Disease Foundation

About me