Featured Writer: Jackie Jax
JACKIE JAX shares her experience living with an autoimmune disease, and finding hope in the midst of having to overcome daily obstacles.
These weeks following the election have been … let’s call them “interesting times” in which to write about overcoming obstacles. Many people have shared this phrase with me in recent years when I described my challenges: “there’s a Chinese saying, may you live in interesting times.” I always thought it was a cruel thing to say. But now I realize that we will all, at some point, live in interesting times. Maybe over time the emphasis got lost in translation. Maybe the focus is not meant to be on the interesting times, but on the directive to live in them.
I’ve personally been living in “interesting times” for some time now. Six years ago, I had to leave both the apartment and the career I’d been in for almost a decade because mold had made me sick. I’ve since had to move 17 times. I have an autoimmune disorder which makes me hyper-sensitive to my environment—especially chemicals—and finding a place that’s safe for me to live is a task I would call impossible, except that living has to be possible, so I make it happen. In between moves, there have been doctors, lawyers, and living with an invisible disability that many of my friends and even members of my family didn’t believe was real until recently. At 37, I was too young to retire, but didn’t know where to start or even what I was still physically capable of doing with the rest of my life. I only knew that I’d be getting a late start on whatever it was. While I didn’t love my career, I was proud of it; I survived a difficult childhood and never took any of my accomplishments for granted.
I know I need to establish my track record in overcoming obstacles for the sake of this piece, but I don’t usually introduce myself with them. They are part of my life, but they do not define my life, and I think that’s part of the ability to overcome obstacles: putting them in their place.
So, now onto the things that helped me get through them. I think much of it can be summarized in a mantra by the late Reverend Forrest Church:
“Want what you have.
Do what you can.
Be who you are.”
I’m going to address these in reverse order. It’s not ideal, but it’s what’s going to work best now, and being flexible and adaptive is key to surviving hard times. I had planned on writing something funny, but just ditched my half-written draft because it didn’t feel “right now.” I’m not feeling well this week and wit would have been forced. It’s not what I wanted, but it’s an option and I’m taking it.
This might sound sad, but in my opinion it’s a relief. At one point, having off days left me sobbing and hopeless. They don’t anymore because I know that they happen and that they will pass. This is the gift of having physical disabilities and being 43: hope. My best friend is a professor of positive psychology who specializes in hope. During one crisis, she explained “Hope Theory” to me: “Hopeful Thinkers” are people who can establish clear goals, find multiple pathways around obstacles towards those goals, and tell themselves they can do it even when those obstacles get in their way. People with disabilities are masters at working around obstacles. We live in a world that was created for people who function differently from us, and we have to navigate that world every day. I think this applies to anyone who’s been alive: things don’t work out as expected, so you come up with a new plan. We do this almost daily (i.e., G train is out, guess I’ll take the F and a bus). With practice, when the larger obstacles come around, they won’t derail you (OMG I made a pun, I guess I’m feeling a better). Believing the goal is possible is where being 43 helps. I know I can do impossible things because I’ve seen myself do them. If you’re not lucky enough to be my age or older yet, I’m sure you’ve already got some experience in this area. Imagine telling 2015 you about 2016. Got it? We’re all capable of doing much more than we know, including—actually especially—things we’ve failed at in the past. If you don’t believe that, fake it ‘til you make it, and you will.
Which brings us to doing what you can. I think it’s unfair to have someone with physical disabilities write about overcoming obstacles. I mean, yes we’re all awesomely heroic, but we don’t have a choice. Making decisions, acting on them, moving on when they don’t work out or having them taken out of your control, these are the hard things. You’re the one who knows both your limits and capabilities best. Don’t let anyone else define them for you. Both are dangerous. In my picture, I’m wearing the mask I wear to block out chemicals while eating a salad. I had the picture taken to highlight how ridiculous it is when people say we can do anything we can set our minds to. We can’t. I can’t eat a salad with a mask on. I can’t simply use a positive attitude to overcome my physical limits. I can, however, gracefully shrug off having a bad day and stand up for myself—or better yet, walk away—when someone tells me it’s all in my head. Defining my own parameters of my abilities is a challenging work-in-progress, but at least I’m at the point where I know to do it.
Finally, want what you have. If you’re not ready to be grateful for the lessons you’ve learned from your challenges, that’s understandable. But, there’s always something for which to be grateful. This isn’t about groovy theories like The Secret. Time focused on things you’re happy to have is simply more enjoyable. We can’t hide in this time forever, especially if we’ve got impossible things to do, but it is a good place to mentally rest and re-set. I recommend making a habit of listing the things for which you’re grateful. They can be small, like the guy who swiped me through the subway when I didn’t even ask. That kindness stayed with me for hours, and I really needed it that day. Just three things is fine, but I’ve found the longer the list, the more enjoyable it becomes. Do it in those moments when you don’t know what to do next or how to do it. Better yet, keep a journal and read it in those moments. It’s a record of all the good things in your life, but also a reminder of all the difficult times that you’ve been through and what you’re capable of overcoming.