‘I have an auto-immune disease called Neuromyelitis Optica or NMO. It’s similar to multiple sclerosis but I think of it as the evil twin of multiple sclerosis. It’s actually worse. Multiple sclerosis usually gets worse over time and between flares. It’s progressive. But with NMO, in between flares, you’re fine. Right now, I’m absolutely fine but a flare can be devastating. I could wake up tomorrow morning and be completely blind with no warning. I could be paralyzed with no warning. I can be fine right now but tonight I could start having a flare and not be able to walk. There’s no warning and no predictability to it at all. It’s caused by lesions in the spinal column. It goes for the eyes. That’s what makes it different from multiple sclerosis.
I started having trouble walking in 2007. I’d get up and start walking and it felt like the blood was falling out of my legs and I’d need to sit down. At first, I thought it was just ergonomic. Two years later, it came back when I was trying on a pair of new shoes and I just collapsed with no warning. I went to my doctor and a back specialist and they thought I had MS. They wanted to put me on a high-risk drug. I have two kids with autism and, sometimes, the drugs you take to combat a disease can be worse than the disease. I had to be able to parent my kids, even if it was from a wheelchair. I was sent to the University of Utah and the doctor there asked me if I had ever heard of Neuromyelitis Optica. It’s a very rare disease that only about four thousand people in the United States have. They gave me a blood test and confirmed the diagnosis. I freaked out. MS was a peach compared to NMO. The worst case scenario with NMO is that you’ll end up like Christopher Reeve did and blind at the same time. The best case scenario, believe it or not, is that you die. Who wants to live paralyzed and blind?
A twenty-dollar test can diagnose the condition but many people in the MS community are, in fact, misdiagnosed and they get put on medications for MS which actually end up making things worse. You can’t blame the doctors. They don’t know everything but I think they can be arrogant and they act like I’m a drug addict because I’m asking for IV steroids. They question why I think I know more than they do. All I want to do is stop the progression of the flare and the pain I’m in when it’s happening. I’ve begged them to act rather than put me through test after test after test. I carry this paperwork and this flash drive with me everywhere as proof of my condition and the terms of my treatment. I wish there was a way, in spite of privacy laws, to share information, even if it meant microchipping me so they could scan me and know what I need and believe me. People with very rare auto-immune conditions need special treatment and special medications and they need to be heard. It’s disgusting to not be believed. It’s infuriating. There needs to be a serious adjustment to how the medical community exercises its compassion. Empathy and understanding would go such a long way in making things more bearable.
Believe it or not, people tell me they’re sorry I have this condition. I respond to them that I am not sorry because it has opened doors for me. I have a huge NMO family of people from all over the world who are a huge part of my support system. There is nothing like a disease, especially one that can kill you, to make you look at the toxic relationships in your life and do something about them. I can die tomorrow. My time is precious. I can’t worry about the things or the people that don’t matter anymore. I’m going to spend time with the positive people in my life. I can’t waste a single minute. You can choose to live your life in self-pity or you can choose to make it the best thing that’s ever happened to you and that’s what I’m doing, no matter how little time I have left.’