This month marks six years since I checked myself into the psychiatric ward at First Hospital Wyoming Valley. Coming this spring, it will be five years ago that I was diagnosed with Anti-NMDA Receptor Autoimmune Encephalitis – and four years since my relapse with the same disease.
I am far beyond acceptance of what has happened to me, from the multiple misdiagnoses to the blood clot caused by treatment to the plain unfairness of having an autoimmune disorder. I’m no longer on any medication. I don’t need to have regularly scheduled scans. I’m not angry anymore. I’ve moved on. I am healed. However, one question that I’m asked fairly frequently, and a topic that I see so many others grappling with is but aren’t you afraid of a relapse?
My answer is simple. No. I don’t think about relapse for two reasons. The first is because I already have a plan in place with my doctor if I should ever relapse again. I am fortunate enough to have a neurologist who is experienced in and comfortable with treating ANMDARE. We have agreed that at the first symptom, whether it is something hugely physical or a miniscule psychiatric change, I will call her and go in for a rituximab treatment. We won’t wait around for scans and bloodwork; we will go straight to the treatment that has worked so well for me in the past. So I don’t have to worry about what will happen because this plan is on the back burner in case I ever need it.
The second reason I don’t bother worrying about a relapse is because I’m twenty-five years old and I need to live my life. A year and a half of my short time on earth was wasted while I was zombified on lithium and depakote during that awful psych misdiagnosis. I refuse to miss out on another second. Sure, I took my time getting back into normal daily life to make sure I was ready for it. Then I jumped back in.
When I was sick, I was single-mindedly focused on one goal: getting better. It took a lot out of me to fight for my life, but it was worth every second. Now that I’m healed, though, I need to focus on the bigger picture. That would not be possible if I was looking cautiously around every corner, afraid that I might end up back at square one. Constant worry is a waste of energy that for me could be better channeled into schoolwork, yoga, drinks with friends, enduring a 40-minute train commute, or reading a really good book. I stay positive as much as I can, but it’s difficult to be that cliche of “I almost died, so now I value every day of my life much more.” That’s because every day is different; every day presents new challenges. I will not let fear of something I have conquered twice now be one of those challenges. I have more goals to accomplish, like finishing graduate school, landing a career, writing my memoir, and growing relationships with friends, family, and Chris.
I intend to have the time of my life doing so.