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Letting Go of the 'B' Word in My Life With a Disability

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The “B” word.

Clean up your mind, not that one! And it’s not Beyoncé either, although she is fabulous. I’m talking about the “B” word for those of us with disabilities. The “B” word many of us live with every single day, even though others may never notice it. The silent word that keeps us awake at night and sometimes makes us put up a wall. You know the wall, that protective one that keeps you from getting your feelings hurt or from hurting others. The “B” word I’m referring to is burden. And for me, and I’m sure for many of you, being a burden is my worst nightmare.

“Burden” is a hidden monster that lives inside many of us. Even though friends and family are happy to help, you can’t help but wonder what they are really thinking. Do they go home and think, “Oh my gosh, not this again” or “Are you kidding me? She’s asking for another ride!”

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I have epilepsy, so my disability manifests physically. This means I need someone to watch my seizure, time it, make sure I’m safe during post-ictal state, drive me home and sometimes drive me to the hospital if necessary. I’ve had epilepsy all of my adult life, so I’m used to asking for these favors. In general, people have been very understanding and supportive. Asking for items off of this list doesn’t bother me. The “B” word comes into play in items not found on this list, but in my personal life.

Like your average 20-something, I enjoy having a social life. I’m entitled to that and so are all of you. My burden fears come into play and tend to manifest when my condition requires accommodations in my everyday social situations. It’s the “oh crap” moment when my friends reach maximum alcohol capacity and I feel like I’m going to have a seizure in the middle of a bar that I fear the most. How am I supposed to ask someone to help me and get me a ride home when they’re on their third cocktail and singing karaoke to “Sweet Caroline” at the top of their lungs? I hate interrupting the fun.

Burden can also creep up when you start dating someone you really like and unfortunately your condition has a relapse. They are so kind and loving, but you can’t help but wonder, is this going to be too much for them? And if it is, will they want to avoid looking like the bad guy, so they stay with me out of pity?

Last month I read an article a wife penned about her husband’s epilepsy. The words she wrote about her husband and the resentment she feels may have been cathartic for her, but they were my version of hell, and probably the deepest fear of many other people with disabilities as well. Could someone love you and still think those horrible thoughts? Could they see every time they drive you to an appointment, sit with you during a test or miss the ever-so-glamorous cocktail party because you had a seizure as a checklist of resentment? Is my family or my significant other the next person to write one of these articles, a laundry list of everything that is wrong with me and why I am a burden on their life?

So what do you do? I’ll tell you what I do; I build my wall. It’s a pretty wall. I’ve had a lot of practice over the years, so at this point I feel like a professional contractor. The foundation of the wall is usually an off-handed comment. Something like, “we didn’t invite you because there would be flashing lights,” or “I didn’t think you’d really want to go because you don’t drink.” Then on top of the foundation I build brick by brick with “I’d rather be alone anyway.” Next is usually, “I’m better staying home because it’s safer in my house.” Then comes the keystone, “If I’m alone, I can’t be a burden to anyone.” Because that’s the secret of the wall, it’s not about keeping me safe — it’s about keeping others safe. The last thing I ever want to do is cause anyone I love pain, resentment or to be a burden.

Burden is the hardest. When you have a disability, you often lose people in your life, and it hurts. I don’t think it means they are weak or mean or bad people. It’s because sometimes they can’t handle this life, and I accept that. As one of my girlfriends said today, “They were in your life for a reason or a season.” Instead of resenting the ones who leave, treasure the ones who stay. Tell those lifelong friends, family and partners just how much it means to you that they stay.

I’ve made the goal of breaking down the wall in 2017. It’s hard as I’m in the middle of a health relapse, but I’m working on it. I chip it away every time I ask for help at work, go to a dinner with friends or believe my boyfriend when he says I’m not a burden.

2017 will be the year of letting go of the “B” word.  I hope you will join me in letting it go and believing that the people in your life truly love and enjoy helping you. Because you, my dear, are amazing. You are beautiful — yes, you reading this! You are strong. You are fabulous! Why would anyone not want to help you? So believe it! Let’s let go of “burden” together. If you’re going to join me, let me know. I’m ready to make a team of people who believe we are good enough to be loved and cared for. We will all go out and karaoke together. I’ll let you pick the song.

And to the husband in the article I mentioned above: if you’re reading this, you are not a burden. You are amazing. Even though sometimes managing our condition can be tough, you deserve nothing but kindness, respect and love. You have a friend in me.

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Originally published: February 1, 2017
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