Many people ask me questions regarding my disability, my relationship, and my blog. There is a lot to learn about how this blog came to be and how far I have traveled to get to this point in my life. Here are the answers to those burning questions for those new to the Great Unwrapping.
What are your disabilities? I have a condition called Autosomal Recessive Ocular Albinism, which limits my vision due to lack of pigment in the eye. I also suffer from Anxiety and Depression as a result of Post Traumatic Stress Disorder (PTSD) from severe bullying growing up.
Is your eye condition genetic? Yes it is. For any form of Albinism to occur, both parents have to carry the same gene. Most of the time, you can trace back to the original relatives that have the same condition, but in my case, my family can’t find the exact link. Guess I’m one in a million.
But you’re not all white. How are you Albino? The Albinism I have is a rare form, in which it’s only present in the back part of my eye only. I can tan, dye my naturally brown hair, and can spot a few freckles as well. But my eyes are sensitive to light and can pick up flickers from fluorescents as if it’s strobe lighting at a night club, resulting in migraines and dizzy spells since the back of my eye doesn’t have the pigment filter to reflect the light back. Hence my optic nerve gets over stimulated and I get disoriented. I also have Nystagmus as well, which explains the odd head tilt (null point) and the wobbly eyes.
What happened to you since you have PTSD? You’re not in the army. I had this asked a few times and contrary to popular belief, you don’t need to be in the armed forces to get PTSD. Any trauma can trigger it in anyone, from seeing a bad accident, watching a loved one die, a bad fight, or surviving a scary experience like a terrorist attack. In my case, my PTSD got triggered from a car accident I was in with my mom, which spawned into flashbacks from bullying from my childhood. I go to therapy about twice a month and take medication to help calm my symptoms, which include anger fits and panic attacks.
Are you able to work despite your disabilities? Absolutely! I have held pretty stable employment since I was 17. I have worked in retail, food service, acting, education, direct support/personal care, and most recently, ticket sales at Disney World. I have had some struggles with triggers (abusive guests and clients) and visual issues, but have learned to adapt from the many obstacles that try to hold me back.
Do you live independently? Yes I do. I don’t have staff or any support other than friends and my family when they come down during the summer months. For the most part, it’s all me running the show. Florida is very lackluster in services so I got to make do with what I can. The only help I get is a Disabilty check for my rent and a free bus pass.
Who is Bill? Bill and I met as part of my college’s buddy program back in October of 2005. I was originally assigned to him as a volunteer who was supposed to call him and take him out on community trips. Turns out that he became a mentor to me, teaching me about self advocacy and not feeling ashamed of my disabilities. We became friends and a few months later, we went on our first date. It’s been almost 11 years and although we dated other people a couple times since then, we remained pretty close. Although we have broken up in the winter of 2017, we still remain good friends with hopes we can work on our differences. I guess you can say we are like Ross and Rachel…We are on a break.
You said in your blog he has some developmental disabilities. Is your relationship considered legal? Yes. Bill has full legal guardianship of himself, which means he could make life altering decisions regarding is care, money, who he votes for, and the kind of things he wants to do, including pursue a relationship. He has a team of caregivers who assist him with paying his bills and budgeting as well as some personal care, but that doesn’t stop him from being an adult with the same rights as anyone else.
What is Bill’s condition? Bill has Cerebral Palsy, which limits his ability to walk and learn anything past a fifth grade level. Despite this, he is very intelligent in terms of a great photographic memory and can explain a lot about law and politics better than Trump can. No lie. He actually helped me pass college level government class, even though he couldn’t read a single line out of my text book. He is very witty, fun, and full of sarcasm, not to mention very caring about others and the community. He always wants to do something for others in need. Like me, Bill is also considered legally blind and also has Nystagmus.
You often say a lot in your blog about him being sick. What’s that about? Me and Bill have an insane age gap in between us, 19 years to be exact. As a result, he is reaching his golden years and is losing some of his abilities to walk, bathe independetly, and being able to sleep in a normal bed due to back spasms. In the last year, he has gotten sick more, resulting in a few short hospital stays for stomach issues and such. Seeing him age like this makes me worried about him. It’s a reality I have to face, and I refuse to leave his side, no matter the circumstances.
Will you and Bill get married? It’s a goal we would love to reach while he is still alive, but due to his conditions and need for in-home care, I am unable to at the moment. We are both reliant on the American Social Security system for our medical and financial needs, and if I marry him, since I make more money, I become the breadwinner, resulting in his check getting cut along with his care staff, potentially putting him at risk for potential health issues since I’m not able to drive him to the doctors and such. We need the help, and the only way we could get it without the aid of Social Security is for me to find a very high paying job with full benefits, and that’s a challenge all in itself.
When did you become a writer? In February 2015, I answered a writing prompt on The Mighty after a night of insomnia. A few days later, it got published. I soon started answering other prompts on the site and soon it became a hobby. In July of 2015, some of my blogging buddies on The Mighty’s private contributor network group convinced me I should start my own blog, and Legally Blind Bagged was born.
Why did you choose the name Legally Blind Bagged? Legally Blind Bagged was born out of a scene from the Big Bang Theory where Howard’s mom answered a Wheel of Fortune “Before and After” question as “Fanny Pack of Wolves.” I wanted to do a fun word play that would reflect on my condition while keeping it fun and nerdy. So since I’m Legally Blind and collect Blind Bag toys, which are mystery packets that contain little action figures or dolls, Legally Blind Bagged was born. I consider my life to be a mystery I am still trying to unwrap, like a blind bag toy. Hence why I sometimes refer to my blog as “The Great Unwrapping.” My writing reflects on that journey.
Where else have you been published? I have had many pieces and interviews done for a variety of websites. Check the Projects and Stuff page from the menu above to take a look at my portfolio.
Got any more burning questions for me? Feel free to leave them below and I’ll add them to this page.