This last week, I received a new ankle brace. Internally, I jumped up and down for joy. Externally, I posted joy on my computer because my ankle is sprained for the umpteeth time in my life. As a lifelong consumer of braces for various joints, this brace is the best I’ve ever had. It is light, fits in my shoe well, looks awesome, and is very easy to use (that is, to take on and off). It is a huge improvement over the one I had before, and I am excited about it.
• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?
It may seem strange to be so excited about a new brace, and new brace technology. People often say things like, “It must be a pain to wear braces all the time.” Or “I sprained my ankle once, the brace sucked, why in the world would you be excited?” For a very long time I only knew that braces – wrist, ankle, back, neck, knee, slings, Ace bandages – helped make my life more livable, but now I know that I need them because of Ehlers-Danlos syndrome.
What is normal, or typical, in some worlds is not normal in mine. My first sprain was 31 years ago, at the age of 7. Crutches and braces have been making my life work since then, and I’ve gotten good at getting doctors to find the best braces for whatever body part needs more support that day. What people don’t understand is that before I learned to love to my braces, I just stayed home when I was injured. I took myself out of life. I didn’t want to be out on crutches, or in braces. Or, if I did go out, I had a hard time engaging through the pain.
That was before I learned that my braces and crutches make my life whole and happy and less painful. Braces give me life – the ability to be out in the world in livable levels of pain. If I can participate in an activity – shopping with my family, going out to dinner, taking a class, playing outside with my son – in less pain, why wouldn’t I want that? I am more present for others when I’m in less pain. However, I didn’t always know that was possible.
I had to come to terms with my need for braces. In my college and graduate school years (in my early 20s), I would often dress to hide my braces. My clothing choices were dictated by which body part needed support that day, or which part was injured. Sometimes, when I especially vain, I’d forgo the braces all together – but then end up spending the next day in bed hardly able to move. Trying to hide who I am and how my body works only brought more pain.
There was a point when I grew out of that vanity. I’m not sure when or where or how, but now I use whatever I need to enjoy or to participate in life. I’ll carry pillows into restaurants, travel with ice packs, ask for an extra chair for my feet, and/or take my crutches if I think they’ll relieve more pain than they will cause.
Know what I discovered? When I am just me, and claim all of who I am instead of fighting it or hiding it, I’m better. I can do more things, I can live more life, I can give more to others – time, attention, energy, joy.
I learned to let the vanity go, and replace it with claiming what I needed, which brought me and all those around me more joy in life. I am less dependent on others this way, too. I don’t often get into trouble (unless it is a new injury that just happened in the moment) where I’ve been out too long and need to limp home on someone’s arm.
My braces are almost part of my body now. My spouse jokes that he got a wife with an exoskeleton. If you, like me, also need an exoskeleton to enjoy life, claim it. As you can see in the picture, my new space-age blue brace matches my wrap and jewelry to a degree. Before, I would have worn a floor-length skit, but today I wear what I want, and use the braces in all their glory to be fully present in the world. If you, like me, are somewhere on this journey of learning to claim the things you need in life, this is your invitation to move forward, knowing that you’re not alone.
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Jessica Harren is an ELCA Pastor, wife, mother. She finds a life of chronic illness and disability has helped her grow stronger and to be more creative and compassionate. She lives near Chicago, IL, with her spouse and son, and writes online in several places, on topics including racism, theology of disability, healing, wholeness, and church renewal. She values honest conversation and lifting others up to share their gifts with the world.
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