Let me make clear that when I use the word “fighting,” I do not mean fighting against the acceptance of our disease. That mind-set is counterproductive because it uses energy that we desperately need to use to take care of our bodies and our spirits. As hard as it is, we eventually need to come to a place where we can accept our disease. It takes us time. Sometimes a long time. But only then can we begin to find out what combination of treatments/medications/diet/exercise/life-changes work for us and nurture our bodies, rather than placing additional stress upon them.
Rather, when I use the word “fighting,” I mean all the things we work to do to give our bodies every advantage. When we feel ourselves coming down with a cold, we often say something like, “I’m so tired. I feel like I might be coming down with something. I think I’ll go to bed early to give my body a chance to fight it off.”
“Fight it off” indeed. Our body has to go into overdrive to fight against the invading virus. In fact for those of us with a Primary Immune Deficiency, that’s what’s wrong: our bodies are no longer able to fight off invading pathogens.
So we need to have some fight deep within us that we can draw upon. Some hutzpah, some audacity. That doesn’t mean we don’t accept our condition. Acceptance is absolutely necessary, as is some degree of surrender: a realization that we can no longer just override the needs of our bodies and spirits, and just keep going at full speed. We need to surrender to the new needs of our body; accept them, work with them.
But that is hard. Really, really hard. We want to fight against it. Deny it. Rail against it. Because at some level we feel that our bodies have betrayed us. And all of those feelings have their place. But only once we surrender and accept our new reality can we move on to the true fight. The fight that I call Grit and Grace. The fight to do everything we can to help our bodies. The fight to still live with infinite passion despite the pain and the exhaustion and the fear. The labor to accept who we now are, and the work of discernment to find our new place in the world. For we still do have a place.
A place in this swirling universe that can enfold us in love and challenge and joy if we will only let it.