by Lila Milam-Kast

“Pick one!” Did you ever hear that as a child, as you stood there, unable to decide which item to choose? How about the more common, “Don’t straddle the fence,” idiom? It traces back to some Bible verse, according to the Internet, and means that you shouldn’t try to take both sides of an argument. I never liked anyone telling me what I should or shouldn’t do. Like the girl with the gleeful joy in her eyes, below, I try to find a way around most things.

Straddling a line, when it comes to my life, is common. You see, I’ve lived with an invisible disability since I was twenty-one. I hid the constant pain and gradually increasing events of chronic migraine that would eventually cripple me from twenty-one to fifty. In my thirties, fibromyalgia was added to that. The trouble was that as a young adult with chronic headaches, I couldn’t keep a job. I didn’t have medical care, wasn’t eligible for state assistance, and was too old to be helped by my parent. I had to pass for healthy and figure out how to survive.

I ended up going to college, where accommodations could still be made, but that path was hard, and I failed many classes. This was the early 90s. My health was terrible. Migraine meds were expensive and unavailable to anyone who couldn’t pay $20 a pill or who didn’t have insurance.

I tell you this now because it is thirty years later, and my migraines and the fibromyalgia that came on in the 2000s are gone. I learned to skate the ice of normality and survive. I never graduated to get a degree from school, but I did get and lose many jobs because they didn’t understand my health issues and would fire me after missing a day or two. I was inconvenient. Of course, they always made up another reason, like a dollar missing from the till they checked when I wasn’t there, or a complaint received from a customer I never saw.

Texas is a right-to-work state, which should be called a right-to-fire state. The employer is under no obligation to keep you, and if he does fire you within a certain period, he doesn’t have to justify why. As a result, many of us with invisible disabilities have learned to “pass” as normal. This is a bad habit now that there have been changes made to the laws of discrimination!! We MUST be honest and upfront about our needs to our employers, to ourselves, and with each other. “Passing as normal” only weakens us as a group by excluding others and affecting the overall idea of who disabled people are as a whole.

I know it is easier to stay quiet. We, who have stayed under the radar, may not know how to start. Some people, with and without disabilities, are uncomfortable using words to describe our needs. We have to step up and teach the world how to talk about disability. We have to normalize these things to make them see us. If we don’t, we will go on and continue to suffer in silence. No longer can we “straddle the fence” in silent safety. It was never safe, after all.

To end this on a positive note, I want you to know that straddling the line means never giving up. People like to make you choose a side, and then they give you a choice. It is an illusion of choice because they first choose what you are choosing from. Stop and think for yourself! I tell my daughter to think outside the box. “Why choose?” You may have to work harder or longer or think about the issues, but this needn’t ever be an “us vs them” issue. Nothing does. 

I am now in remission, in my early fifties. It took a lot of work, but I never gave up. When a doctor said I couldn’t do something, I would find another path and try something new. Speak up for yourself. Be honest with others and NEVER give up. If a friend is in your way, they may not be the friend you need right then.

What am I doing with all my time now, you might ask? Hah! I gave it away when I signed back up for university in order to finish my degree, of course! I am now the oldest student on Southwestern University’s campus, currently. That isn’t saying much. It is a small campus of 1500 students. I get asked if I am faculty often, however.

I am working toward a degree in Education with an Art minor. I want to come back to the disabled community when I graduate, with everything I’ve learned, and do what I was taught from the beginning, in nursing: help them help themselves. I won’t be an Art Therapist. I will be a Disability Advocate who teaches Art, working in the non-profit sector, actively making life a little more accessible for those needing it to be so. Science has proven how much these services help people feel better mentally and physically. That so little funding is given to support what takes so little effort to make such a big difference, is such a shame in my opinion.

Lila de Goicoechea Milam-Kast is a native-born Austinite and a current senior at Southwestern University in Georgetown, Texas. She is majoring in Education, with an Art Minor. She has an Associate of General Studies from Austin Community College and attended the Registered Nursing Program there from 2006-2008. She practiced as an LVN for four years before becoming disabled with fibromyalgia. Her interests include Disability Advocacy, Fantasy Role Play Games, and avoiding I-35 traffic.