I intended to examine responses of friends and family to my diagnosis and life with Ehlers Danlos Syndrome. That will wait for the next installment in this series. Today, I am going to address my response.
That's how a chronic, debilitating illness can make you feel. Absolutely trapped. In your body, in your house, in your routines.
I'm trying to change my routine. I've just reopened an amazing album by Material Action, and I'll be remixing tracks and adding some vox. I'm accepting a few more manuscripts for edits than I'd planned. I'm writing on two schedules: every day for an hour, and whenever I want to.
These are things that help me leave the confines of a body that no longer does my bidding. But these things don't erase larger issues, especially the feelings of worth that come with contribution to a shared vision--or the lack of that contribution.
In this case, I am specifically referring to my inability to financially contribute to my marriage in a way that is equal to or greater than those contributions from my spouse.
I was married before, as you may recall from the brief bio on my main page, and I was a full-time mom and full-time student. I worked as an assistant manager in a restaurant for several months, but I decided to go back to school, to complete my Bachelors degree. Afterward, after leaving the income-generating position and entering school, conversations about money became more stressful. I felt as if I had no leg to stand on, no right to complain about sticking to a budget, because I wasn't the one making the money. This became a dark little worm that burrowed into my brain. Unworthy. Unable. You have No Right.
And I find myself in that position once more. While my editing rates are standard, most indie authors are able to procure editors for less. I find that I truly spend more time on manuscripts than some of my counterparts, so lowering my prices isn't something I'm prepared to do at this point.
So here I am.
Did you know that there exists no specific disability code for Ehlers Danlos? Though joints dislocate, organs fail, muscles atrophy, and aortas dissect, there is no one all-encompassing disability code. If I want to try to claim partial or total disability, I must show all of the documentation for each separate "problem." I must go to each doctor for each problem as many times as possible, documenting the decline in certain areas of function.
But, as I stated before, I am in that special Hell where my spouse is responsible for the finances and I am merely a bystander. I cannot spend each weekday at a doctor's office for some test or followup for some separate piece of the Ehlers Danlos puzzle. I have responsibilities. Parenting, and doing a damn good job of it, comes first.
So the quiet hours find me waging war.
Unworthy. No, I'm not. It's not my fault. Doesn't change reality. Doesn't mean I can't demand a certain level of accountability. Doesn't mean I can't communicate my desires. Doesn't mean I can't feel anger and frustration. Right?
Finding myself feeling trapped in so many ways lately, I reach for the things that keep me smiling. My son. Friends old and new. Conversations that are finally occurring.
But inside of these walls, in this house that I can't renovate by myself, in this body that makes grocery shopping feel like a marathon, I shrink and shrink. Even as I raise my voice in anger, I shrink. In this way, an invisible illness works hard to make sure that I disappear completely.
In my ways, I work hard to make sure that I am seen, heard, and known in this life.
In the next installment of this series, I will examine the reactions of family members and friends regarding my life with Ehlers Danlos.