Random Mutations

---

In the summer of 1969 I was born, a twin, along with my sister. The first thing many in that room, on that day, noticed was the congenital birth defects. At that time they labeled it "Lobster Claw Syndrom", the EEC variant of Ectodermal Dysplasia, and between the ages of 1 to 15 I would undergo seven major surgeries, all centered around my hands and mouth issues. My twin sister suffered no mutation, my entire family saw no other children with my condition, and so it was marked as a "random mutation".

I've never met any other person with this condition. Which is weird as I now waft through pages of profiles and stories of my fellow community members. I'd be lying if I said it wasn't hard, as a child, to adapt to a world that would rather we disappear. I spent most of my childhood alone, osteracized by my peers, and always being bullied. I'd also be lying if I said I never thought of suicide, because I did, even as a young adult. But in those days the United States did not have this attitude of uplifting the disabled, it had quite the opposite.

In high school I had two more surgeries on my hands, helping with the realignment of my crooked fingers, and it was then i began to see how others viewed me. To so many I was a "communicable" disease, something they were afraid they might catch, and had even been asked by employers if indeed it was "communicable". I think many here can understand how that made me feel. I dropped out of high school, twice, and then became homeless for several years. I shifted from fast food job to fast food job, and finally made it into the convenience store scene as a cashier, when my grandmother was diagnosed with pancreatic cancer for the second time.

She made me promise I would graduate from high school, and so I began Night School to do just that. At age 22, I graduated from high school and still had no direction of where to go. I struggled with jobs until in 1994 I was able to land a tech job at then DEC (Digital Equipment Corporation). It would be there that I would learn of how my hands would impact the rest of my life. I suddenly began losing my gripping functions, it was painful to squeeze tools, and the lifting of ten pound drives repeatedly cause a repetitive injury that left my hands damn near crippled.

I had no choice but to file for disability, and after a lengthy fight, and two tears later, I would get it, only after reaching out to Congressional leaders of Colorado state. I took part of my back pay and bought a computer, began learning html, and graphic design. I then went to a technical college for several quarters before leaving to be with my wife, then girlfriend, whom I met online. I take no pride in being on a system that refuses to give us a voice, and so I was always looking for better opportunities.

I dropped out of college, married my wife, and was an at-home father to her daughter. We never had children of our own, as we would later find out that my Vas deferens was missing. My sperm had nowhere to go. At age 38, I went back to college to try and obtain a degree that would enable me to gain employment of some kind. During this time I would discover the Eugenics laws that permeated our society up until the 21st century. The state I was born in, california, had laws that allowed them to sterilize persons with disabilities on the books until the year 1980.

All the while, my vision began degrading, and during this entire time I would undergo five surgeries, to replace the cornea in my right eye. In 2010 I had the fifth surgery that utilized a plstic cornea, but my vision in that eye failed anyway. Now my left eye is degrading. The fear of total blindness overwhelms me some days, and the idea that I may be blind and a burden to my wife drains me daily.

Last year I had a radical orchiotomy. An undescended testical had become cancerous and they had to remove it. The hormone therapy afterwards was hell on me, and being that the risks were equal with, or without hormones, I opted to stop it all together. I hadn't thought about suicide in over two decades until last summer. I would rather be mellow than to have a sexual appetite. My wife is a saint.

In 2014 I graduated with a MPA(Masters in Public Administration) but because I do not drive, I could not even get an interview for an entry level state job...or any job...and I found myself knee deep in debt for a degree i couldn't even use. I was thankful that President Obama had moved to allow disabled people to discharge their student loan debt, as it at least helped relieve that stress. My MPA was centered around Disability Studies, Tribal Governance, and NFP(Not For Profit organizations). Even through all of this i continue to try and find a way to be productive.

These days I spend most of my time at home, writing fantasy stories with heroes who have some sort of disability, while my wife tries to support us with her job. We live every day as if it were my last day, as we are never sure what will happen next. To date, I have had 27 major surgeries.