Last fall was a low point in the turning wheel of my life. I was getting sicker and my life was increasingly unstable. I spent hours on the phone every day arguing with my insurance company about paying for testing, infusions, medications. It was obvious to me even before the test results came back that my disease was affecting organ function worse than before. It was becoming harder to envision a life that looked like the one I wanted to live. My multitude of medications weren’t managing this anymore. I was watching the life I had worked so hard to build be laid to waste by this disease.
I was mentally exhausted and so tired of fighting. Every minute was a struggle. I was so tired that I no longer cared what happened. In the worst moments, I would whisper, “I just want it to be over.” I didn’t want to die. I just didn’t want to do this anymore. I just wanted to stop fighting and go to sleep. No one wanted to hear this. If it happened to me, after all, it could happen to them.
I made it through this winter, with its bone pain and emotional upheaval and endless hours of doctors, hospitals and insurance. Every day, I had to decide if I wanted to give up and just accept what would happen. I would decide to keep going in the morning and if it felt insurmountable that day, I would tell myself that I could stop the next day. But I never did. I kept fighting, not because I wanted to, but I didn’t want to let everyone else in my life down. Sometimes that is enough. Sometimes we just some reason not to stop, and it doesn’t even matter what that reason is.
There will come a day when I stop fighting, when I just accept that this is as good as it will ever get. On that day, I will not argue with my doctors anymore, or send them papers on protocols I want to try, or write letters for them to sign so I can send them to my insurance company. I will stop trying to stem the losses piling up in my life and just let them go. I will sleep. On the worst days, this seems like consolation. It is comforting to know that at some point, I will be able to rest.
A lot of us are struggling hard right now. Really hard. I am anaphylaxing weekly, sometimes more than once. I am sleeping for 18 hours at a whack and get winded walking for a few minutes. I have friends in the hospital, friends with sick kids, friends who are dying. I know that some of them wish, like I did last fall, that it would just be over. I know that some of them feel the strain of this endless struggle.
But this is not the time. This is not when we give up. It’s not always this hard. IT’S NOT ALWAYS THIS HARD. If there comes a time when you can’t fight anymore, you will know. Until then, you can’t give up.
Every day this week, when I was done brushing my teeth after puking, I looked into the bathroom mirror and said, “Not today.”
Don’t give up. You can do this. You are doing this.
Stand up and fight.