Last Tuesday night, I was filled with the kind of bubbling anxiety that reminded me of the night before a big trip. I preferred thinking about it that way, as if I was heading off to a distant and unknown land and I needed to be prepared for the long journey ahead.
I went to make the next day’s lunch and put together my breakfast so that all I would need to do was add almond milk and water to my special oatmeal of champions the next morning. The routine of chopping up my apples and walnuts for my breakfast, layering the spinach, turkey bologna and mustard for my lunch felt comforting. It reminded of the days when I was teaching, needing every spare minute in the morning for sleep—I was a unreformed night owl fighting against the early workdays of school life.
I mentally packed as I flossed and brushed my teeth, then put on my pajamas. I threw comfortable clothing into my mountaineering backpack and laid out what I was going to wear the next day. I didn’t know whether it was going to too hot or too cold, so I decided it would be best to dress in layers.
I packed my charged iPod of music, iTouch of lectures, Kindle and some books. I would have my iPhone and laptop, but books were my lifelong companions, and there was something soothing about leafing through their pages, both delicate to the touch and packing a punch with impact. At the last minute, I decided to throw in a small copy of something I hadn’t looked at in many months, Every Day I Pray.
I finally settled into bed, attempting to do a little nighttime reading, but I kept jumping up sporadically as I thought of yet another thing to throw in my backpack. The phone charger. Ginger candy. My journal.
Eventually I fell asleep, and far too early I awoke to my mother gentle shaking my shoulder. Being so prepared the night before, I just had to go through the motions and suddenly I was in the car, in front of the office and finally in the chair as the nurse began preparations for my long day ahead.
“Here’s some Tylenol and Benadryl,” she said, handing me pills. She hesitated for a second, wondering whether to give me one tablet or two of the Benadryl. “Two will probably put you to sleep.”
I laughed. “That’s okay,” I reassured her. “I got less than six hours of sleep last night, and I wouldn’t mind getting some more.”
After getting my vitals, I was moved over to a comfortable recliner. The next thing I knew the nurse was giving me a steroid, something I wasn’t expecting at all. I was informed that this was yet another precaution against adverse affects to what I was about to receive.
Suddenly, I was feeling extremely heavy headed and needed to drop my head. The nurse quickly grew alert but my mother and I reminded her how sleepy I was. My chest also began to feel a bit constricted, and I felt extremely overheated. I heard the nurse saying something about the anxiety I must be feeling about getting the treatment, and I thought, That’s right. I’m supposed to be feeling some fear here.
As I lay back in the suddenly reclined chair, I realized that all of the preparation and pushing things around the night before had been my way of not allowing myself to feel the one thing that was really at the center of it all—fear. Suddenly, I was wide-awake.
Early the night before, I had texted a close friend, asking him to keep an eye out for any clear indication one way or other about whether I should go really through with this treatment. My friend had been receiving several signs of his own over the last couple of days while going through 30 years of physical and emotional baggage in preparation for a sudden move—one message kept repeating in different forms through a fortune cookie message, a movie ticket and an album of the past, that aligned with a radio show and conversation we’d had the previous day. I figured his antennae were up, even if he couldn’t always interpret the signals.
I was still uncertain as to what my own signs had been telling me the last several weeks. I had gone on a 12-mile bike ride for the first time in more than a decade two weeks earlier and a great hike the next weekend, and my movement disorder had been on really good behavior for the last three weeks. Was it counterproductive to go through a treatment when I was, at least momentarily, doing so well? On the other hand, I was on my second round of antibiotics for an infection that didn’t want to go away, and I was showing major signs of another type of infection raging alongside it. In between my athletic jaunts, I was extremely fatigued, while my ribs and telltale joints felt inflamed and extremely achy. The rashes that had gone away during the yearlong treatment on prednisone had unsurprisingly resurfaced with increasing frequency and breadth over the last couple months. No matter what strides I was making from a physical activity achievement standpoint, I could not ignore the fact that at least parts of my body were holding a protest.
In less than an hour of starting treatment my mother leaned over and said, “You’re starting to get a rash on your face.”
My typical rashes very rarely appeared on my face, so I curiously checked out my reflection. A raised, red blotch was on my cheek. Observing it over the next half hour, it had spread across both cheeks and the bridge of my nose. The nurse shared the news with my doctor, who was nonplussed, claiming he’d seen a rash on my face in my visit the week before. My mother and I knew better. Regardless, I was grateful for the double dose of Benadryl. I also thought it would be extremely ironic if the one time I clearly displayed a “butterfly rash” typical of lupus was on the day I received aggressive treatment to put it in check.
Shortly after, I fell into a state of semi-consciousness, one of the main reasons we had decided to go through with this “final stop” in treatment. The scariest aspect of my disease, I never really knew when they would occur, for how long or how often. Fortunately, a half hour later, I was back to my normal self, and the rash had completely disappeared. All that was left to do was wait as the infusion ticked on by, so I got out my Kindle to read.
In truth, the main source of my fear was that I had somehow failed myself by not giving my body enough time to heal more naturally. As a health coach, my job is not to heal people but to help give them tools to improve their health and wellbeing—yet I still felt like I was a failure as my own health coach.
True, I’d been eating so well, packing my diet with gluten-free whole grains, leafy vegetables and fruits packed with antioxidants. I had researched the vitamins and supplements that were best suited for supporting my specific health conditions and made them a part of my daily life. I was exercising regularly, trying my best to get quality sleep and I was doing my best to surround myself with healthy, uplifting relationships. Over the years, I had exhausted alternative and complementary medicine as far as my budget, health and comfort level could handle.
Now I was physically very strong again, yet I had lost too much weight and was anemic. In between my beautiful days of pushing my body farther than I had in more than a decade, I fought to have the energy to do the things I most needed to do in every day life, much less most of the things I wanted to. Once again, I found it near impossible to fight off infections. While it was so hard to admit it to myself, I needed help outside what I was already doing for myself.
Sitting in the infusion room next to my mother, who was patiently and silently showing such support despite her own strong fears of the very rare, worst (and deadly) side effects that had been reported with this treatment, I realized I had gotten through the toughest part. I had made the incredibly difficult decision to give this thing a try.
I decided I wasn’t giving up at all, but adding one more tool to my already powerful arsenal that had brought me miraculously far in less than six months. If this one extra thing could bring me over the edge to a real remission that lasted at least six months, perhaps even longer, wasn’t it worth taking that chance?
I could only truly fall down on the job of self-care by failing to consider all my options, by refusing to admit when I needed help and by thinking my way—while to me admittedly the more attractive option—was always the best and only way. Wasn’t the opportunity to have a fuller and more complete life all-around worth doing everything I possibly could for it? My answer was ultimately yes, and knowing this brought me more peace than I’d felt in a long, long time. Whatever the end result.