I was looking forward to writing an exuberantly triumphant post for day 100 but that’s just not where I am today. The truth is, I’m feeling the tension between the gratitude and loss much more keenly these last few days.
When I look back on the last 100 days I am astounded at how far I’ve come. There’s no way I could have predicted that I’d be hiking and running and biking again in only three months. I feel like I’m finally coming back to life. I can drive and cook and do laundry! I actually know what it feels like to have energy and contribute something meaningful to the world! I’m finally moving towards recovery! It’s incredible!
On the other hand, these last couple days with my family have really hit home what a fragile recovery it is. It hinges on a life that revolves around avoiding even minute amounts of toxic mold which is just as hard as it sounds. It’s a life of full time camping, frequent moving around, and lots of showers. One bad campfire, one moldy RV, one day with my dog from New York and I can feel myself slipping back into illness. That can hardly be considered normal.
So far, this is not a recovery of going back to the life I had before I got sick. It is decidedly a new normal. I can be healthy as long as the conditions are just right. But I can’t be healthy and spend time in water damaged buildings. I can’t be healthy and visit friends in moldy cities. I can’t be healthy and hug people who live in problematic locations. That’s hard. There’s just no way around it.
Is it always going to be this way? I don’t know. I still have a lot of hope for a more complete recovery but I expect that some level of mold avoidance will always be necessary. I doubt I will ever move back to the Pacific Northwest, for example.
I wonder about a lot of other things too. Will I ever be able to live in a modern building? Will this hyper-reactivity prevent me from attending important weddings? Will I ever be able to find a church that meets in a safe building? Will I ever be able set foot in a dance studio again? Will I ever be able to hang out with people who live in problematic environments? If we do have a house or apartment someday, will we be able to have people over?
I just don’t know and I’m learning to make peace with the unanswered questions. I don’t really have the mental and emotional bandwidth to worry about the future so I’m just focusing living today as best I can.
For now, I’m just grateful that mold avoidance has given me the tools I need to manage my illness. I finally have a measure control over my symptoms. There may be a lot of loss involved but I no longer have to spend my days in physical agony. That is a blessing that cannot be overstated.
By the way, Brett and I made a beautiful PDF of my favorite resources for suffering souls. I created the content and he made it look fancy with his superduper graphic design skills. It’s available for free to my email subscribers. Click here to sign up and receive 5 Resources for the Suffering Soul.