“It’s like a cage, Mommy,” my daughter lamented at the daily regime to keep herself healthy amidst a long-term illness. She had refused my suggestion to add yet another “to-do” item on her checklist. She tried to explain what it was like for her. I didn’t understand then. I do now.
I spent ten years with undiagnosed Cushing’s Syndrome. In 2017, I had an adrenalectomy to remove the attached rogue tumor pumping out excess cortisol that caused my disease. Then I entered the blindsided horror that is “recovery.” Through months of trial and error, some ok days and plenty of crisis days, I found a routine that allowed me to live a “normal” life. Using my body as a guide, I tallied a list of what I had to do to stay healthy and functioning.
One morning, as I pulled the bottle of my medication from the shelf, I was filled with a frustrated rage throughout my body. I clenched my hands and jaw and made a rebellious noise I hadn’t heard since my children were toddlers. The pill bottle made an echoing sound as I threw it onto the floor, pills rattling around. I was sick of it!
All the things I had to do felt like bars closing in on all sides: the strict diet, regimented sleep schedule, prescribed exercise, mandatory meditation, and the pills: vitamins, herbs, and hydrocortisone – the synthetic version of cortisol.
Although too much cortisol almost killed me during Cushing’s, too little cortisol could also kill me during recovery. I needed a ballpark amount of the drug in the morning and then again in the afternoon to stay alive. But that amount oscillated due to various pop-up stresses ranging from day-to-day exercise, worrying about anything, or even the weather. Plus, my goal in recovery was to wean off the drug. I had to somehow make my one remaining adrenal gland start producing what I needed naturally. But unlike diabetes, there is no monitoring system for recovering Cushing’s patients. So I would make the best guess on dosage and then deal with medical crises when I got it wrong.
For a regular person, a good diet, exercise, meditation, vitamins, and herbs might be a healthy lifestyle choice. For me, it was the only way to function while going through recovery, which could take years. And this morning, I hated it all.
I looked at my medic-alert bracelet, which I had to wear in case of an emergency, say a car accident, where I was unable to tell the crew I needed cortisol to survive. It suddenly felt heavy and binding, like a shackle around my wrist. My breathing became shallow and quick. The bracelet quickly followed the medicine’s placement on the floor with a satisfying metallic clank. I felt trapped with everything I had to do.
And then I realized that I didn’t. I did not have to do anything. I was an adult. I could make my own choices. In fact, I had built this cage all by myself. I was both the jailer and the prisoner.
I envisioned not taking any more pills, skipping my morning exercise and meditation, and flopping on the couch with a bowl of ice-cream for breakfast. And repeat that the next day and the next. Yes, I could do that. No one would stop me. But there would be consequences:
Without meditation, my anxiety would slowly creep back along with my inability to handle pain. Without moderate exercise, my muscles and bones would never rebuild from the Cushing’s, leaving me fragile and weak and achy. Without the strict diet, vitamins, and herbs, my inflammation would return creating pain and the need for more cortisol. All that pain and anxiety would disrupt my sleep, bringing on migraines, depression and a whole bunch of crap I had been thankfully leaving behind with the Cushing’s.
But that would all take some time. The time I would not have since without taking the synthetic cortisol, I would descend into a medical crisis within a day and possibly die in less than a week. If someone found me and took me to the hospital, they might not treat me correctly without that bracelet.
I took a few deep breaths, the same kind I taught my children to calm down from tantrums. It was true that I did not have to do anything, but the consequences would not just impact me, but all of my loved ones as well. What had been the point of struggling through Cushing’s only to give up now?
At that moment, I chose to pick up my bracelet and medication bottle. I stepped back into that cage willingly. The bars were still there, but they were not made of iron but of love. Love for myself, my family and friends, the people I had yet to meet, and the things I had yet to do. I could live with love. I choose to.
Rebecca Angel Maxwell