One day I would like to have the experience of living on my own. Since I have had a physical disability all my life, limb-girdle muscular dystrophy (LGMD), I don’t know what it’s like to have my own space. Yes, I have my own room, and I am thankful for that. But it’s just not the same as having your own place and making your own rules. I think I would feel more free and like more an adult if I had my own.
There are a lot of disabled people who live on their own, and it’s a big accomplishment for us. It shows people that we are capable of living on our own and being independent. A lot of disabled people still rely on family members for help, so some of us (like myself) just stay at home. It’s always been like that for me. I still need help with getting in and out of the shower, getting dressed, and doing hair care. Those are just my basic needs, so I know it wouldn’t be easy living alone because it’s so much more to it.
Read about HCP resources for MD
It’s a little overwhelming to think about because I will still need someone to come in and help me. I am so used to getting help from my mom and sister, so having a complete stranger come in will definitely take some getting used to. When I was still in grade school, I had different people help me in and out of the bathroom, and a lot of times, I wasn’t comfortable. Just imagine having strangers see your body every time you have to use the bathroom. I’ve always felt like I had no privacy, and that has always been a struggle for me.
I also think about the way the healthcare system is set up. Since I’ve never really had an aide or nurse come in and out, I’m not sure how that would work. When I first got a trache tube put in after being hospitalized for several months, I had 2 different nurses come in, but they did the bare minimum. And they were only coming in for a month or so after that, and we no longer wanted 1 because they didn’t do much for me.
Since then, my mom has always done my trache care for 13 years now. How much help will I really receive? I have a friend who has an aide, and from my understanding, the aide is supposed to come in every day for 30 minutes. I don’t feel like that would be enough time for me. I would need help going to the bathroom throughout the day. Also, will they get paid enough to work for me? It’s just so many questions that I have.
On top of wanting to live on my own, I think of the cost of living. Since I am disabled, living off of my disability isn’t enough. I think about giving up being on disability and looking into getting a job, but then that means I have to give up the insurance that I receive. I will no longer be able to afford my routine checkups, monthly medical supplies, or even my wheelchair. It is just so much to think about. Those are some of the reasons I just stick it out because no matter if I’m in my own place or not, I will still be getting help from someone.
Just looking for a place to stay is tough because I would need a place that is wheelchair friendly. It’s not a lot of places that are made for us. Most of the time, disabled people have to adapt to their environment and make it as accessible as possible. That is okay, but challenging because I wish there were more places out there, so we won’t have to do much to make it comfortable for us. I wish there were more resources out there for disabled people. Or maybe there are, and I just haven’t come across them yet.
Yes, I am so grateful, thankful, and blessed that I do have my family to help me. I am also thankful for the strength God blessed me with. I can still do a lot that others aren’t capable of. But I can’t help but think of what it would be like living on my own and feeling more free. I tell my friends who aren’t disabled and living on their own to be grateful for just having the strength to care for themselves. It is not an easy thing to need help every day. I feel like a child sometimes asking, can I get help in the bathroom?