Someone asked me recently what would happen to this blog if I were to get well, given that I primarily write through the lens of life with chronic illness. I remember immediately thinking Dude, what an awesome problem that would be. Were this tiny corner of the internet a documentation of my weird sick life that ended on a high note with my full recovery, it’d be a major celebration. I’d have no problem changing the URL to Zero Pills A Day and then pursuing other writing projects. Or I’d keep writing here, through a healthier lens. But the truth is, while it may not always appear that way, I am still sick. For a couple of reasons I am far more functional than I’ve been in the past. Every day when I think about the crashes I experienced in Colorado and California, and basically all of 2012, I thank every particle in my being that I’m not there again and those parts are over.
That being said, there’s a lot of ‘behind-the-scenes’ work that accompanies life with this illness. I still take a a lot of medicine just to keep my head above water and feel decent enough to do things. I’m lucky and grateful for modern medicine that allows me to feel relief, but I’m still mostly treating the symptoms and not the cause. (We still don’t know it, but we’re getting closer as there is more research than ever) It’s still easy for me to overdo things and then spend a day or two or more recovering. The natural state of my body is pain, and some days I barely leave my room. CFS can be very erratic and navigating it from day to day feels like a job in itself. But by far the biggest factor allowing me to function better and devote time to rest and recovery when I need it is something that’s a bit of a sore subject for me: I am not working. I am thirty years old, a college grad, and I’m not in the workforce.
Even writing that here still stings a little.
In 2011 when I was forced to leave my job, all I wanted was to go back to work. My plan was to recover enough from the crash so I could either return to my old job or seek work elsewhere. I was bitter about not working, and I hated the idea of being unable to support myself. But even my specialist said if I wanted a real shot at getting better, I needed to stop and devote time to letting my body recover. So I did, and while I experienced a bout of health that summer, I crashed again in the Fall, which is when I began this blog. The next year, 2012, was disastrous and I was sicker than I’d ever been. I’ll never forget my sister carrying me on her back up the stairs because I was too weak to climb them, or the deep sadness I felt unable to walk my own dog. That was the hardest year of my life, on a few levels. And I’ve had some shitty years to compare it to! But it was also the year I came to fully surrender to the reality of my situation. I almost didn’t have a choice. Through a lot of tears, weeks in bed, and the care of my family, I made it through those storms and emerged on the other side. It wasn’t easy, but I began to make peace with my circumstances and forgive my experience.
I often wonder if the outlook on my life would have been different if I were told in advance what was going to happen to me. Something like: “Hey, you’re going to get really sick. You’ll have to stop working, but don’t worry, your family and friends are going to take care of you. You’ll feel shitty a lot, but you’ll have new time on your hands to read great books and practice creativity and finally develop the voice in your writing. Remember writing, your lifelong passion?!” I’d probably be like “Oh OK, that’s cool I guess.” It seems like often the source of anger or disappointment with life is that it doesn’t coincide with what we expected or planned. We like to think we’re in control of what happens. And when something like illness comes in and bowls over all your plans, well, it sucks. Mostly because you have to live with the uncertainty of not knowing what will happen to you and relinquishing control. The weird truth I learned again and again through this is that we’re never actually in control. We just feel more comfortable living under the facade the of it. Somewhere deep down we know that our calendars and to-do lists can be wiped out in a second by things outside of our power. But this doesn’t mean we don’t play the entire part of how we face what life throws at us. In fact this is the part where we have the most control. Either you make lemonade, or throw the lemons at people on the street, I guess. In my case it felt like I could stay mad and bitter at the things I lost, or I could try to make sense of the pain and move forward with the lessons and a life that was different than what I’d planned. This took a long time and is something I work on to this day.
To be honest, not working in the traditional sense still tugs at my ego and can make things very uncomfortable. It’s difficult to explain to strangers (and sometimes friends) and I’m well aware of the stigma it carries. I can feel what people think sometimes, and it doesn’t always feel good. At the same time, this is my life right now and maybe only I can know the truth of my experience. Some people will get it and some people won’t, but none of that should really dictate whether I’m able to find meaning in the life I have. My purpose isn’t among the 9-5 world for now, and that’s OK. It doesn’t mean I don’t have one. I just have to look deeper to find it I guess.
It took a long time for me to believe that–mostly because I always assumed the point of life was to grow up and get a job, then marry and have some babies. I never thought to deeply about it or beyond that. Now I work daily on accepting the direction of my life and harnessing gratitude for the things that I do have. In truth it was getting sick that allowed me to pursue writing as much as I have, which was always my passion. I guess I’d call that the Lemonade from sick lemons. Hardy har. Still I look forward to what’s next and other projects that don’t revolve around being sick. I try to use the memories of my experience as fuel and not fear. Mostly I’m just trying to do make the most out of my current situation, and I guess the only thing anyone can do is live and be grateful for the moment, which is now. No now. Well no now its now. Like Deepak Chopras watch says, it’s right-now-o-clock! Life is just the eternal moment.
Health, Happiness, Lemonade.