And what about the conditions that aren't common enough to have communities of their own? Neurological problems can be diverse and rare, but still have large areas of commonality with other conditions. Epilepsy, ALS, MS, and a host of rarer conditions are all around us, but there is not a lot of push in the adult advocacy community to bring our advocates together in order to foster a more diverse community and a more nuanced discussion about neurodiversity and/or neurological conditions in general.
Sometimes, that can leave people who really need help outside the tent. My partner Liz is one such case. I'm not going to describe her condition for you, though. After reading several of my posts about recognition, language, and "passing"/invisibility, she decided to compose a post of her own.
In my early teens I was diagnosed with Epilepsy. This sudden diagnosis changed me physically and mentally. The pills I had to take stopped my seizures but they made me lethargic and obese, and feeling mentally slow. At least I had a community to help me get through high school and my adolescence. The Epileptic community was accepting and it gave me comfort to discuss my situation with people going through the same thing.Starting today, Liz will be writing with me here at Shaping Clay, so that we can start to widen our perspective about neurodiversity and disability issues. You'll see her show up with her own byline shortly.
My condition is no longer Epilepsy but I am still neurAtypical and without a community.In my twenties I was diagnosed with the disease Rasmussens Encephalitis,following brain surgery. RE is an extremely rare degenerative disease that causes seizures,hemiparesis and some cognitive impairment. Children have better treatment options than adults. The primary treatment is hemispherecotomy (removal of half of the brain) children are able to overcome the impairments that they are left with after surgery because the child and adolescent brain is more flexible than an aduIt brain.As an adult I was not a candidate for more surgery as the damage would be irrepairable so, I pursued alternative treatment methods.
There is no support community for adults with Rasmussen's Encephalitis, but there are groups for children and parents of children with RE. I can’t belong to either of those groups, I don’t even belong to the Epilepsy community, after my diagnosis of RE I was no longer considered an epileptic by the community that had been my support system for years. Now they won't have me. At an appointment with one of my specialists I was told that there are only about forty adult-onset cases of RE currently known to her (a specialist in RE). My new community is too small to be a true community, many adults with RE have a lot of health problems or cognitive impairment. I have never talked to another adult with my condition, but I have tried to belong to the Rasmussens community and was again left out, as I am neither a child or the parent of a child with RE. I want to find a community that supports all neurAtypical people.
In my search for a new community I have tried to join a few and I was treated like a fraud and a liar. Before abandoning epililepsy.com I set up my profile with my disease name and I blogged about some of my recent experiences, in hopes of finding someone to identify with my situation. The only responses were from an angry mother who claimed that I was lying about my condition. “People with Rasmussen's Syndrome can’t get on the internet and blog.”She was sure I was a fraud, because of my cognitive capability. So I moved on to the greater medical community to look for more people like myself, and I found multiple parent and child support groups. No group I found tried to create a discussion amongst adults with RE, adults with RE just are not recognized by them. Another site I found actually required a subscription fee.
My identity as a disabled person is another struggle. I have been a person with a neurological condition since I was a teenager. After my surgery and second diagnosis I discovered that my seizures were not “simple” idiopathic epileptic seizures, they were the result of a much larger underlying disease.The disabled community is also another exclusive one that I don’t quite belong to. I have a disability that is not obvious externally 80% of the time. RE is characterized by “seizure clusters’” that will continue until that part of the brain is scarred.I have petit mal seizures that last anywhere from 10 seconds to 1 minute. I don’t have them every day so I seem “normal most of the time. When I do have RE related seizures they are either brief and inconvenient or they are debilitating,exhausting and painful. Because people only see me when I have the smaller seizures they assume that I am actually perfectly fine. It is frustrating to live with a disease that is always there under the surface. I am constantly embarrassed when I fly, as I require handicapped seating. Flying is tiring and stressful to me and stress aggravates my seizure condition, but when people see me in a handicapped seat their reactions have ranged from outright confrontational to the standard whispers.I want to find a community of others like me who struggle with hidden disease.