There really is no pretty face on chronic illness. But there is one particularly ugly side that I have tried to hide, as I suspect many other people in my situation have done. We don't talk about the despair. And I don't mean occasionally feeling in the dumps. I mean the crying in the pillow all night, trying to keep the images of your daughters' faces in your head just to keep from giving up completely, what is the fucking point level of despair. I let myself get overtired this week, between sitting up all night in the airport before the flight, the trip itself, the physical exertion of moving stuff, the putting on a happy face mask to hide my fatigue, and the guilt from not being able to keep up and needing other people to pull off herculean tasks for me. This afternoon I broke. I am having a hard time summoning the will to keep going, knowing that this is my reality for the next five to forty years, and it's all on me. No one is going to do it for me. If I am going to make it through all of this, I have to do it alone. And at times like this, I really don't want to.
Almost fifteen years ago, I sat off on the side in the hospital room, while my grandfather went through this exact sort of crisis of confidence. I overheard him ask my mother, as he faced his third round of cancer, what exactly was the point of fighting it anymore? Where was he going to find the energy to keep going? He made it all of two weeks after that moment, maybe a little less. At the time, I was horrified by the idea that he faced that bleak path, and he let it beat him without a struggle. But back then, I was still relatively young and relatively strong. My lupus had already expressed itself years earlier, especially after the girls were born, but I still thought the mystery illness was a temporary, short-lived event, brought on by the Norplant birth control I'd used after the second child. Around the time my grandfather died, I was just entering another phase with my undiagnosed enemy, dealing with increased pain in my feet and decreased lung capacity. I thought my coughing fits were asthma resulting from stupidly exposing myself to full-strength cleaning ammonia, and that eventually things would settle down and I'd be able to breathe and run again. I imagined that just because I was interested in working in the construction trades after it looked fun on TV, I'd be able to teach myself everything I needed to know to flip houses, and do that for fun and profit. Never mind that I didn't have the strength or energy to handle those few projects I took on around my grandfather's house after his death. Never mind that the littlest things would wear me out, and once physically tired, my mental resilience would vanish, and I'd end up having screaming tantrums over nothing. I had no idea back then that this demon I was fighting was so strong. This hydra had many heads, and all of them had sharp teeth and bad attitudes. I still didn't know then that it had a name.
Seven or eight years ago, my aunt committed suicide. My brother and I sat in the car outside the funeral home, waiting to travel in the processional to the cemetery, and struggled with conversation. Our stepfather was taking the loss very hard, as would anyone who had suddenly lost their little sister that way, and his grief was difficult for my brother and I to witness. In the car, my brother said to me, "Don't you dare do this. Not ever. You're not allowed to go first." Back then, I couldn't imagine ever doing such a thing. Of course I wouldn't, I promised to him. Never crossed my mind. But again, this was before I understood the evil underbelly of chronic illness. I was still undiagnosed then. In fact, I was still being told that my blood tests were normal, that there was nothing wrong with me that diet and exercise couldn't cure, and that my pain was all in my head. I don't recall now what was the source of my aunt's chronic pain, but back then, I couldn't imagine that there was anything that diet, exercise, and modern chemistry couldn't fix. In the last three or four years, leading up to my eventual lupus diagnosis, I had to remind myself of that promise to my big brother more than once. I relied on everything it took, that promise, my girls' faces, and the practicality of who would feed my animals while my husband was half a world away for a year and a half. I met that deep despair head on, and in my darkest moments, I faced it, red-faced and snot-nosed, with these powerful tools to keep me from letting it win.
It takes energy to face this horrible side of chronic illness day after day, week after week. Most of the time, the tools are in place and victory is assured. But in the dark times, when you don't know what's wrong with you, and your world is falling apart around you (such as when you watch your two oldest cats evaporate and die in your arms two months apart, one of your long-time human friends dies suddenly of a DVT, your gut turns against you violently, and your partner decides that he no longer needs to deal with your shit from the other side of the planet), it's really hard to scratch out a victory. I've done it thus far. I'm still alive. But I am afraid of the next day when my reserve energy is low and I feel all alone in this battle. I have to plan now to have a strategy for when those days come at me one after another. Eventually they will. There will come a time when platitudes won't help, and I will need an arsenal to fight the hydra. Maybe I should hang up more pictures of the kids around the house, so there's some in every room. So far, they are the strongest weapon I have against the despair.
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