“My map” pre-and-post medical leave

My favorite television heroine of all-time is Ms. Sydney Bristow from the hit show “Alias” created by J.J. Abrams. Ms. Bristow is a brilliant, bad-ass, strong, sexy double-agent who struggles valiantly to remain vulnerable, compassionate and connected in a world marked by evil intentions and unimaginable deeds. I am inspired by this character for a multitude of reasons, but perhaps most of all, I admire that even when she is overwhelmed by emotion and she feels like she can’t keep moving forward, she does.

I also strive to move forward when it feels like I can’t, which is why I hit a bit of a roadblock upon needing to take medical leave. Because unlike Ms. Bristow, I was facing a time where I literally could not make forward progress, despite my best intentions. While on medical leave, I stopped writing partially to rest and partially because I was ashamed. I felt that in taking time to heal (and not doing a very good job of healing during my time off) that I was admitting defeat to so much that I aspire to do and be.

There is a phrase in our culture that I move between loving and hating: Cancer Warrior. We throw that title around like a badge of honor. In many ways, cancer and autoimmune patients (as well as other patients with significant chronic conditions) can behave like warriors, by pushing through the pain, “defeating” their symptoms and moving forward in healthy and renewed ways. But when you’re in the trenches and your symptoms have yet to improve dramatically, the title of “warrior” can inspire a pressure I’ve never known before.

I went back to work a few weeks ago not because I felt physically ready to, but because my short-term disability claim was tied in red tape and I couldn’t miss any more paychecks that were supposed to be significantly covered by that insurance. My claim finally went through today, accompanied by an apology from my case worker who told me that if my doctor wanted me to take time off again that I could immediately, now that my claim had finally been processed. But how do you take time off once, let alone twice, in a culture that pushes you to be a disease warrior?

I stopped writing and I hid my pain from even my closest friends during my leave. Because who wants to hear complaining? I want to write about training through the pain, about “overcoming” lupus and beating the odds. No one wants to tune in to hear tales about how I skip meals because I am too tired to grocery shop or how so much of my hair has fallen out by now that I can no longer put it up without showing off multiple bald spots. Or how about a blog dedicated to hip and kidney pain that spikes so severely in the middle of the night that it wakes me up and holds sleep hostage? That sounds like a fun read, huh?

I love heroic stories, especially if they involve spirited girls or bad-ass women. And as a result, it has seemed inappropriate to write when I am neither feeling spirited nor bad-ass. I wanted to tell you that going on medical leave has made me wiser, stronger, better. I didn’t want to report that I am still tired, still in pain and far more discouraged than when I began. But the truth is, invisible diseases suck. And my immune system is having far too much fun waging war on itself to cooperate at the moment.

But here is the multi-colored lining to the ridiculousness that has been my medical leave: I went into it with certain expectations and they were not met. That is both frustrating and enlightening. Inspiring, even. Early in Season One of “Alias” (if you haven’t seen this show, it is streaming on Netflix, so what are you waiting for?) Sydney draws her handler a map of how far she believes her enemy’s reach extends. She insists that if they are going to defeat the enemy that they need to do it her way and they need to do it now. Her handler calmly brings out a map of his own which illustrates that the reach of the enemy extends farther than Sydney could have possibly imagined. He then tells her that it is not about killing an arm of the monster, it is about killing the monster as a whole. My medical leave expectations were essentially Sydney’s map. But my lupus has a reach that resembles her handler’s map.

So, what’s next? I set about killing the monster. It is going to be a longer journey than I would prefer and a more complex one than I imagined before I took medical leave in September. But, I have learned something about my condition over the past few months and that knowledge is invaluable. And I am not going to lie to you all and say that I maintained a brilliant, optimistic attitude throughout the entire process. I spent some time in some dark, discouraged places. But I can say sincerely that I have emerged from them with a greater sense of clarity and with sincere optimism rooted in the knowledge I have gained.

I hope you will stay tuned to my blog, which I hope to write roughly twice weekly from now on. It will not always be happy-go-lucky, but it will be hopeful, genuine and rooted in pursuits of health, happiness, marathon success, strength and inspiration. But for right now, (even though I hate to admit it) writing this is exhausting, so I’m going to go watch some “Alias.” And somehow, I know that deep down you’ll all forgive me for that.