By Jennifer Baker
Growing up, you always thought about what you wanted to be when you got older. And your parents always said you could do it. As you get older, you start to realize that things are a little harder than you first thought. I have Ullrich Scleratonic Muscular Dystrophy, so living on my own is a little tricky. I use a power wheelchair full-time. I need help with most of my daily needs. And I use a non-invasive ventilator. I live with my mom so that she can help me with what I need at night, and I have an aide who helps me during the day. But to a point, I am still independent.
I go to the doctor by myself. I decided to do this partly because my mom can’t always take off work, and I like that fact that the doctors have to talk to me about my health, instead of assuming that I don’t know what I’m talking about and only talking to my mom about it. I find it very important for the doctors to talk directly to me. It also affords me the privacy I would prefer to maintain over certain issues. There are times when I wish someone could go with me, but I guess that’s part of growing up: doing these things by yourself like any other adult would. I use SoonerRide to go to and from my appointments, then I take my chair wherever it can go. As long as there’s a sidewalk, I’m free.
Living on your own can be done, if you’re safe about it. You must make sure that you ask the important questions, and always be honest with yourself: Are there suitable residences for disabled people? What do I need help with? Will state or private insurance cover it? Each state has a different set of rules and regulations for services and equipment.
I feel that once you have the important questions answered, though, it’s your world.
Dating, however, is a different experience for everyone. It doesn’t matter if you’re in a chair or not. The only difference is the way you date. Some meet the people they date online, while others meet them in a public place. You can date whomever you want! In a chair or not.
I’ve always dated someone in a chair, not because I didn’t want to date someone who could walk, it’s just that the people I have always gravitated towards also happened to be in a chair. And after a while, you forget they’re in a chair. You just see them, and they just see you. There are good and bad points, however, to dating someone in the same position as you: the good is that they can better understand some of the things you go through, the bad is that they’re going through the same challenges, and also striving for their own sense of independence. But when you love someone, none of that other stuff really matters anymore.
I met my husband at MDA Summer Camp. We knew each other for years before we started dating. He was also in a power chair, full-time, so when it came time to figure out living arrangements and what would be best for us, we looked at all our options. We decided it would be best for us to live with family. However, we still maintained our independent relationship and life. We went to the doctor alone, paid bills together, and still went through everything that any other married couple goes through. The only difference was we had our family a few steps away.
Every marriage sees many of the same challenges and joys. It doesn’t matter if you’re disabled or not. Being disabled does mean that you have a few more decisions to make together, which can make you stronger. But once you figure everything out, being married is an amazing part of life.
I’ve learned that you can’t change your disability or the fact that you need help. But, when you have the will to do whatever you want in this life and have faith in yourself, you will succeed. Just put your mind to it, and always fight for what you want!