Almost everyone can point to moments in their lives dictated by the choice: fight or flight. By definition, the fight-or-flight response is a physiological reaction that occurs in response to a perceived harmful event, attack, or threat to survival. Friedreich’s ataxia (FA) patients have to choose to fight every single day.
Part of the advocacy realm that I truly enjoy is the opportunity to travel to new places and speak to different groups of people. At the beginning of March, I had two speaking engagements in Baltimore, Maryland. The flight from Los Angeles was five and a half hours…
When I was a little girl, I used to have this recurring fantasy every so often in which I was Queen of I don’t even know what, with all these helpers who did my bidding all day, every day. I loved this fantasy. Life was so much easier…
Friedreich’s ataxia (FA) is a big, overwhelming disease. And with it being so rare, it can feel very isolating. My immediate family and I had never even heard of FA until my diagnosis in 2013. When we started telling family and friends about this disease, my aunt remembered seeing a…
I’m going out on a limb here to talk about one of those controversial issues that tend to get skated around a lot in disabilities communities: voluntary euthanasia (VE), also known as physician-assisted suicide. Last year, I met someone who was severely disabled by an accident. I found…
Friedreich’s ataxia is physically challenging, but the mental aspect is often extremely debilitating as well. People are either afraid or unwilling to discuss their true emotions while dealing with such a serious illness. No matter how much you want to keep to yourself, you must know that whatever…
As my Friedreich’s ataxia symptoms progress, so do my feelings and emotions about this complex disease. When diagnosed, I accepted it pretty quickly. I obviously knew that something was wrong with me, so defining it helped validate what was happening to my body. Don’t get me wrong, in my younger…
Throughout history, fear of the abnormal has been deeply ingrained in the human psyche. Disability as a supernatural punishment In ancient times, impairment was believed to be the result of divine intervention. Seen as punishment for angering the gods, the only solution was exorcism or banishment. Alternatively, it was…
The last week of February was extremely busy here in Southern California for the FA and rare disease community. On Feb. 23, the Friedreich’s Ataxia Research Alliance/University of California, Los Angeles (FARA/UCLA) FA Patient Symposium was extremely informative. FA specialists, FARA, and pharmaceutical companies all gave presentations…
Disability can be an isolating experience, depending on its severity and a person’s willingness to look past it. Of course it’s incredibly isolating. Every single disabled experience is unique, and it can be hard to find able-bodied people who understand our daily struggles — who really empathize, and…
Until I recently had a discussion with a friend, I hadn’t realized how important the city of Los Angeles was for my outlook on having Friedreich’s ataxia. I realize now how extremely lucky I am to live in such a magnificent place with beautiful scenery, amazing weather, and…
Why is it so hard for some people to recognize that people with a disability are human as well, with the same needs and wants we all have? I have seen a lot of nonverbal people with a disability treated as if they are mentally incapacitated when they…
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