Gaining Independence living with Muscular Dystrophy

Hello, and welcome back! Independence…….this word can have a totally different meaning to someone who has lost their independence for an extended amount of time, than it does to someone who has never had to fully rely on someone else for every little thing.  This is a thing that you hold much more dearly when you’ve felt what it’s like to have to rely on someone else to help you roll over in bed, to help you sit up, to help you shower, wash your hair, help you use the restroom, make all of your meals etc. Complete and total vulnerability. If you’ve never dealt with that, you just don’t understand how that makes a person feel. For me, on a typical basis, I can do these things on my own. However there have been extended periods of time in my life when I did have to rely on someone else to fulfill my every want/need. In my younger years it was my parents, and my sister when I would have a surgery, or fractured a bone, or had a particularly weak period of time, and as I got older it is also my husband. My level of independence fluctuates a lot. 

Maintaining my independence is the driving force that gets me out of bed every day. It’s something I cherish, and something I also know that could be taken from me at any moment. It could happen to any of us. In fact, if you have ever been down and out for a period of time with an injury you have probably had a taste of what losing your independence looks like. While being injured certainly isn’t the same as having a disability, you can get a snapshot of that feeling. I am not fully dependent on others to do many things, but there are things that I am fully dependent on others to do for me. There is nothing worse than wanting to get something done, and you know you just can’t do it. That you are at someone else’s mercy and time schedule to complete certain tasks. A lot of times it’s not something that other person even wants to do, so it’s not a priority and that can be extremely frustrating.

When I was 24 years old, I packed up all of my belongings and moved to Memphis TN. I had never lived in any other state than my home state of Indiana. Mostly, aside from my college years, I lived in small town Indiana. Moving to Memphis, I knew only one person, who is now my husband. He had moved there after graduating college and he convinced me to join him after I graduated from college. It didn’t take much convincing, after one visit I was in love with that city (and him too), and decided to give it a go. 

When I moved to Memphis, I absolutely hated being alone. I had to always be surrounded by someone, and preferably groups of people. I just felt uncomfortable being alone. After I moved there, it became apparent to me that that was a feeling I was going to have to get used to. I was forced into embracing my independence. My now husband was a new engineer, and worked many long days and into the night. He was also studying for his test to get his license as a professional engineer, so that took up a lot of free time he had when not working. At first I was kind of miserable, I cried a lot, journaled about being alone and how much I hated it. As time went on, I found my first job out of college, and took on a new hobby of painting. I started to come around to the idea of being independent, and not relying on others to bring about happiness for me. I started to see that I could do a lot on my own, and I could go where I wanted to go, even if I did get lost, I would find my way. It was a life changing experience for me, and helped me to grow up a lot! I will always hold those memories and people I met there very near to my heart, very special, and I still love each and every friend I met there. 

Our first home under the magnolia trees!

It was the catapult I think I needed to survive as I got older, and my body got weaker. I knew that I could do things on my own, and not have to heavily rely on others because I had had to. I worked in social services for the state of Tennessee. The people I worked with had mental and physical disabilities, I had a huge caseload and was required to do monthly work and home visits with my clients. Memphis is a big city, and there are lots of areas to learn. Sometimes being alone on these home visits was scary, not knowing where I was going or who I was meeting. It was also difficult at times for me to get into the homes, and I often crawled up stairs with no railing. I learned SO much during that time of my life, and met so many great people along the way. 

Cheryl, our husbands worked together and  we became fast friends!

Alex who I worked with and  who became my good friend

My beautiful friend Ruby who lives in Memphis (Not pictured my lovely friend Emily)

 I tell that story because that was a pivotal time in my life when things shifted for me. I started to see that I was capable of doing very hard things, and that I didn’t always need someone else to assist me. I could figure out a way to do most things. Moving to a different state knowing only one person for sure took humble courage, but it forever changed me. While I still enjoy being around others, I am perfectly content with being alone now too. I think I was afraid before of what may happen if I was alone. Now, I no longer live afraid, but I live by faith that even if something happens, I will be ok. I have the tools I need to function independently for as long a I can, and I value each day, each hour, each level of independence I am given. I will never take it for granted.