I am blind on my left side, I have Ehlers-Danlos Syndrome and cPTSD. Each of these impacts my life in different ways and presents me with unique challenges. Since my company has been certified through Disability-in, I wanted to share some information about my disabilities and how over many years I have learned to see myself as resilient not broken.
When I was 4 years old, my drunk dad was throwing small objects into the wind and watching them boomerang back. One of the items was going to hit me in the head so he told me to duck. I turned around expecting to see a duck, and was struck in my left eye. Nobody understood how severe the situation was. His drunk friends started laughing at me while I was screaming. When I didn’t stop screaming he tried to look at my eye and realized I needed to go to the hospital. The hospital flew in a specialist and they did emergency surgery to stitch my eye. My vision was permanently blocked by the scar, so they had me wear eye patches to force my brain to use the eye, and prevent it from ignoring it altogether. I was wearing eye patches on my first day of kindergarten. I continued wearing patches until I was in second grade. The kids bullied me endlessly for wearing a patch and I struggled to make any friends through the bullying.
- I need special paperwork from my eye doctor so I can renew my drivers license.
- I cant see people who wave at me on my left side, most of whom do not know I can’t see them, and those who do often forget if it’s my left or right side. Sometimes people think I am being rude when I can’t see them.
- My vision in the dark is extremely limited, I choose not to drive at night for this reason.
- I choose not to drive whenever possible, I rely on others to drive where possible.
- My glasses have an uneven prescription which can cause headaches.
- I have had 5 different types of eye surgeries on my left eye since age 4.
- I have almost no depth perception, if someone tosses something to me I will step out of the way or dodge because it’s extremely hard for me to judge how far or fast it is coming towards me.
Ehlers Danlos Syndrome
I’ve always been very flexible, when I was a kid I would raise my hand in class and stretch my arm as far as it would go. Teachers thought I had broken my elbow because it would bend so far, I knew they would usually get grossed out so they would call on me to get me to put my arm down which I thought was funny. As an adult, I would show off because I could always do the splits, touch my feet to my head, and spin my hand around 360 degrees with my palm flat on a table. I wanted to think up more creative ways to ‘flex’ my stretchiness so I went to the internet and saw a lot of information about something called EDS. I asked my doctor about it and later I received a diagnosis by a geneticist (who specialized in EDS) in San Diego. He let me know that I needed to treat my joints with caution, I needed to use joint braces to reinforce my knees and elbows and I needed to do screening tests to ensure I am healthy. He told me to have an echocardiogram, bone density scan and retina check every 10 years, possibly more frequently when I get older.
- My joints get hurt long before I feel any pain.
- I have carpal tunnel syndrome
- I get random joint pain from doing things I can’t remember.
- I need to limit my physical activity, especially walking uphill or more than one flight of stairs.
- I scar very easily – in the picture of my tattoo which is a self injury cover up, you can still see individual stitch marks on my arm from when I was 14 years old.
- I don’t carry heavy objects, rolling a suitcase behind me is a challenge so I usually limit myself to what will fit in a backpack.
- I get severe canker sores very easily if the skin in my mouth is injured such as by eating pistachios. (may not be related to EDS)
- I struggle with low blood pressure.
- My loose joints cause me to have terrible balance, so I am clumsy. My geneticist explained it to me like this: Your joints are shaky, so your brain doesn’t know where down is exactly and thinks you are walking like you are on a boat.
I had many diagnoses before being diagnosed with Post Traumatic Stress Disorder. The eye injury, bullying, father who has had a lifelong alcohol problem and extreme generational trauma on both sides of my family comprise the framework for my own mental health condition. Things went from bad to worse for me when I moved out of the house just before my 18th birthday. I quickly found myself in a cycle of domestic violence. I am forever grateful for the Women’s Resource Center of Oceanside where I sought help from age 16-22.
- Sometimes when traveling I become afraid to leave my hotel room, so I try to bring a person with me to help make sure I don’t hide.
- I can panic in unfamiliar situations or places, I need to show up to a venue well before the event starts, or the day before if possible.
- I need to have noise canceling headphones available to me to help reduce noise, I will start to panic in moderate crowd noise.
- Sometimes I need to take very sudden time off work to take care of myself if I am having flashbacks.
- Making eye contact is difficult for me.
- Physical contact is extremely uncomfortable for me, even handshakes.
- I was part of the Disabled Student Services in my University because of my severe test anxiety, and I had an IEP (Individualized Education Plan)
- I’ve struggled with drug & alcohol abuse. I have been drug free since 2009 and sober since 2020.
I’ve been told that I should not think of myself as having a disability. People have told me that others would feel sorry for me, or not believe me. I’ve been told because I can see on one side that means I am not blind, and not disabled. I’ve been told if people knew I have cPTSD that I would be regarded as unreliable, delicate, and less-than. Former managers have told me that employers don’t want to have to provide ergonomic accommodations for Carpal Tunnel Syndrome or any of my Ehlers-Danlos Syndrome needs, so I should not say anything until after I have the job. For these reasons and so many others I have seen myself as broken, I have believed that I needed to work harder and not let anyone know what I might be struggling with. I blamed myself for being bad at soccer and catch. I blamed myself for not being able to participate in large events like my college graduation. I let people be disappointed in me for my shortcomings as if I had nothing else going on that made those things impossibly difficult for me.
In the past 5 years I have begun to accept my limitations and live within them. It takes courage to say no I can’t take the stairs, and face the judgment of others thinking I am lazy or in bad shape. Over time, I have been able to find and surround myself with people who are compassionate, people who are understanding and encourage me to listen to my mind and body. I can see the ways in which I am resilient, and it has everything to do with standing up for myself and what I need.
I encourage everyone to stand up for themself, share their truth, and thrive.