Chiari Malformation

My life with double vision and seeing the world with four eyes open

Even though I have lived with a chronic pain condition for many years, it wasn’t until recently that I fully realized how my condition influences how I interact with websites, applications, and other digital content, and how there aren’t many resources available that talk about…

A little over a year ago, I was diagnosed with Postural Orthostatic Tachycardia Syndrome following a fall on campus and subsequent hospitalization. I’ve learned a lot about how to manage this condition over the course of a year, and my professors have been very supportive…

In 2019, my time living on campus came to a very sudden and unexpected close after I was diagnosed with a medical condition that made it impossible for me to continue living on my own. While this medical condition is now much better controlled and…

I recently came across a conversation thread on social media talking about how difficult it can be to keep a dorm room clean with chronic illness and how having a messy dorm can be frustrating not only for visitors, but for the person living in…

Recently, I had the opportunity to give a talk at the Inclusive Design 24 Conference (ID24) called “Why Everyone Should Design For Chiari Malformation,” in honor of Chiari Malformation Awareness Month. This talk was especially meaningful for me, as I ended up giving it the…

The first time someone asked me if there was anything they could do to make my workspace more accessible for my chronic illness/brain condition, I wasn’t sure what to say, as I had never considered how it could influence how I configure my desk or…

I love the look and feeling of a freshly-made bed, but I’ve found that many of my Chiari Malformation symptoms like neck/shoulder pain, headaches, and poor strength/coordination in hands are aggravated when I make my bed using traditional methods. Over the years, I’ve received tips…

One of the main reasons that I am skeptical to try new devices or devices made by brands I’m not familiar with is because my brain condition can have a tremendous impact on how well I am able to use the device, or if I…

Dealing with medical emergencies while living in the dorm/on campus housing

I was having a conversation with one of my friends recently where they had asked me if I had any tips for clothing shopping with sensory processing issues and tactile defensiveness. Clothing sensitivities are common in many people living with vision loss, including children and…

As a college student with a disability and chronic illness, there have been times where I’ve been unable to attend my physical classes due to issues with my health or other factors. Luckily, my professors are awesome and allowed me to attend my physical classes…

When I was in middle school, I noticed that it was easier to read text early in the morning compared to later in the day when my eyesight would be worse, not realizing this was due to fluctuating eyesight. As I got older and my…

The other day, one of my friends was asking me about how to find accessible exercise videos for people with sight loss. They were telling me about a specific experience where they were trying to follow along with a workout video on YouTube where the…

When I was in high school, I sometimes had difficulty explaining how common technology behaviors or other technology in the classroom would hurt my brain, also known as give me a migraine. Many teachers assumed that I was refusing to participate in class, but the…