Grasping for Independence

Hello and welcome back! I appreciate all of the readers each and every week. It makes me happy to think that I could be making a tiny dent in helping to raise awareness surrounding disabilities. I was talking to a new friend yesterday, who is a former MDA national ambassador. She and I agreed that some days it feels like we are making a difference and making progress in helping to raise awareness surrounding disabilities, and other days it just feels like we aren’t getting anywhere, or are actually going backwards. However, neither of us plans to give up! We know that it matters.

Independence…It's a word that can take on so many different meanings depending on the person. Something you will hear if you are listening to our current fight within the disability community, is that we are fighting for our independence in many different areas. Why? Because, independence is important to living a confident and fulfilling life. There are many ways in which our independence can be taken away from us. There is also always someone who would be grateful to have independence in areas we take for granted.

Obviously, I can only speak for myself when I talk about what being independent means to me. Currently, for me, I am fighting to keep walking, which of course provides a great deal of independence. Something many take for granted. Each day, I sit up in my bed independently, and I'm grateful. Every single day. I thank God that I still have this ability. I swing my feet down to the ground, and take a deep breath. I pray that I will be able to stay on my feet without falling, and I give thanks for the continued ability to walk, even if it is laborious. Then, the intense focus begins. Every single step, focused. When walking, if I take my focus off of every step, just for a second, my right foot will catch and I will trip and likely face plant. I often ponder if it is safe for me to keep walking. I am home alone a lot of the time. If I fall, I'm likely not getting up on my own. At least not without crawling to the nearest surface where I may have a slim chance of hoisting myself up, depending on how badly I was injured in the fall. Luckily for me, most falls result in a few hours of rest, icing and some soreness for a few days, although I have fractured my foot and my knee in the past from falls, and dealt with concussions. So, walking is risky for me. However, that independence is huge for me. I'm not trying to be a hero by continuing to walk. I have nothing to prove to anyone, and there is also no shame in accepting the help of an assistive device, and many times it is not a choice at all. I may continue to need assistance, like I do from my scooter, which I started using in 2017 for distances. This is because my disease is progressive. I continue to do my water workouts several times a week to keep my muscles as healthy as I possibly can. 

In the water, I feel free!

Something else worth mentioning, is all the planning that goes into my day. I don’t mean only planning daily activities, but rather planning how I will get out of certain chairs, or from one place to another. Are there stairs, is there a railing, or a curb? If I'm at a restaurant, thoughts of can I safely make it to the bathroom? Mentally assessing the pathway. Is it crowded? Even the slightest bump from someone can send me to the ground easily. Constantly planning my next move before it happens. It can be a lot of internal stress. If you are with me, you would never know all those thoughts are going through my mind! But they are. Going out independently in public is something I have to give extra thought to.

Driving. This one is huge. So much independence comes from being able to drive. There are many living with neuromuscular disease who do not have this opportunity. Again, I'm grateful. I often talk about how, in the water, I don’t feel disabled. I feel free. That’s how I feel when driving too. 

As my disease progresses, and my body ages, something I have become acutely aware of lately, is my dwindling energy to get things done around the house. I really take pride in keeping a very tidy and clean home. It's what I like to do for my family, so they have a nice and comfortable place to live. There was a time when I could say to myself, I will clean the entire house today, and although it was extremely difficult, and resulted in some hard days after, I could get it done. Now, I have to pick and focus on one or two physical tasks for the day. I just don't have the energy or endurance to have a designated cleaning day. I've made adjustments that are working for now. Trying to give myself some grace. 

Something I do not like doing is asking for help with these things. I feel like when I do that I'm just handing my independence over. Right or wrong, I've got a firm grip on it. When things are out of my control, and I have to surrender in a certain area, it's devastating to me. Living with Muscular Dystrophy, so many things are out of my control.

Something you may not think about with those living with a physical disability, is that getting dressed for the day can present some challenges. For me, I always have to have a place to sit to be able to get my pants on. If my pants are tighter, it's hard for me to pull them on, and can take a lot of my physical energy. Putting socks and shoes on also is hard. I have to pick one leg up, cross it over and hold it up while trying to put my sock on. Then again on the other side. Shoes, are a huge source of frustration for me. Some of my shoes can be hard for me to pull on. Also, things like boots are nearly impossible for me to get off. I also have weakness in my arms, fingers etc. It takes a lot of strength to pull off a tight shoe. If Jamie or the boys are around, I will have them assist me. Also, since both of my ankles are fused, they don’t bend in certain ways which makes putting on some shoes nearly impossible. 

Opening jars and lifting heavy pots of water are two things in the kitchen that are a struggle. If someone is around I usually try a few times to open the jar and then my frustration level rises, and I get upset and finally ask for help. Why do we do that to ourselves?! I enjoy cooking and baking, but have also noticed I have less of a desire to make the new things or big meals like I used to. It takes a lot of energy at the end of the day. Most of my energy is in the morning, which is when I try to get physical tasks done, and then save the computer work for later in the afternoon. If I can prep dinner ahead of time when I have more energy that makes my day much easier. Finding ways to keep my independence in the kitchen is important to me because it is something I enjoy doing. 

Alone, these things may not seem like such a big deal. When you put them all together, and it is everyday of your life though, it adds up. Adapting to stay as independent as I can is my goal. It's important for those of us living with disabilities. So much of what happens as a result of our disabilities is out of our control. I can choose to feel defeated because of things lost that were once things I was totally independent at. Or, I can choose to focus on all of the things I can still do. Sitting around feeling sorry for ourselves is a dead end. We are only wasting time when we do that. It's very easy to fall into that trap. It happens. Life happens, and can get us down. 

Humbly courageously accepting that my independence may start to look a little different, just like I do as I age, is something that I need to continue to work to embrace. Even typing that sentence makes me a little uncomfortable because I know it's not going to be an easy thing to do. Having a lifelong disability, I’m very aware of what lack of independence, physically speaking, looks and feels like. Take time to stop and appreciate even the smallest things you are capable of doing, and be grateful. All of these things are a gift 💚