I spent thirty minutes talking with my infectious disease doctor and nurse practitioner this morning. How am I progressing (or not)? What are my prospects? How does my recovery compare to similar cases? Would a different diet, more sleep, or alternative medicine help?
“I don’t expect you to get worse,” she offered. “Gradually, over the next few years, the good days will start to outweigh the bad.” Her eyes were mournful, knowing that even the most patient patient doesn’t want to wait years to feel better.
I pleaded with the doctors, stating that I don’t care about the side effects, as long as treatment is ultimately leading me to a state where I can be my fully-functional self again. I don’t care if I look like a hairless leper or sleep for months at a time, as long as I can hike and stay up past 6pm again.
In the end, they convinced me that all market-ready antifungals are chemically similar and, since I came back negative for coccidial meningitis, the benefits associated with stronger medications don’t outweigh the risks.
I thanked them for their help, but before they left, I spoke quietly, with a sigh, “I feel like I’m living in Groundhog Day.”
“Dear” the doctor responded before walking out the door, “it’s because you are.”
I don’t know what the future holds right now, nor what my life will look like now that my favorite hobbies will likely be off the table for years to come. When my life consists of little more than work, sleep, and doctor’s appointments, where will I find fulfillment and small instances of joy?
I don’t know what steps to take to either expedite my recovery, or accept its excruciatingly slow pace. According to leading doctors, I’m already doing everything right. So, what now? Do I simply wait, replaying the same day over and over again?
Lab work. Disappointment.
Office job. Fatigue.
Anti-fungal medication. Nausea.
Anti-nausea medication. Nap.
Drive home. Headache.
Sleep. Sleep. Sleep.
I am actively trying to seek the good things, the helpers. I have a low-stress job that pays my bills. I have good medical insurance and have already met my annual max-out-of-pocket. I am working with the best doctors in the world and am on the best treatments currently available. The infection has not moved to my brain and I’ll likely start feeling a little better each day moving forward. I have a loving and supportive family. Instead of being a bald inpatient on my birthday, I’ll have laughable bald patches and weak knees. Most of all, I am strong–more resilient than I realize, and I know that I will emerge out the other side a better person than I was going into this.
There is so much to learn on this journey, and no matter how long this leg of the trip lasts, I intend to move forward with wide eyes and an open heart.
existential ergonomics 