In my second-to-last last post, I wrote a little about our trip to Stanford. I really was full of hope, then. Researching this new option, buying a ticket to California to go to a research hospital and talk to a new doctor; I wanted it to demonstrate to the universe that I was serious about getting well. I wanted the universe to notice. In my previous life, the one before I got sick, I seemed to accomplish a lot by sheer force of will. Greg used to joke that I was an “elemental force” (a partial refernce to M:TG cards, for you fellow nerds).
Sometimes I wonder if it was that ability to just stress myself into oblivion, summoning some great inner resource to compensate for all the things we didn’t know at the time – that I had severe anxiety, that I had ADD – that was actually the cause of my body eventually breaking down. I can’t do that anymore, certainly. Greg and I will even joke about it sometimes. “Yeah I thought about taking that trip, but I can’t elemental-force-it anymore.” I don’t know why I got sick. We can’t know. I share that frustration with nearly everyone who has been diagnosed with something hard and damaging and life-changing. We can spend the rest of our lives asking, “Why?” But it won’t get us anywhere.
The first round of antivirals seemed to go well, for awhile. It felt like my pain was less. How much of that was due to the meds and how much to finally going fully gluten-free (a whole other story), we aren’t sure. But, after about ten days, I began to have these dramatic attacks of fatigue, worse than anything I’ve ever experienced. I’d be sitting in my sewing room and suddenly have to get up, stumble through the laundry room and around to our bedroom, and collapse on the bed, because apparently every mitochondria I had unanimously decided that ATP production was a complete waste of time. If I rested for a couple hours, I’d get a little energy back, but the attacks began hitting over and over. I was declining, rapidly.
I went off the medication, and the attacks immediately stopped. I called my doctor at Stanford. He said it sounded like I was overdoing it. He said this happens a lot, people feel better, they start doing more, and then they crash. My “attacks” were just the consequences of me not pacing myself. Not wanting to be an argumentative patient, after all this guy was two states away and I felt very privileged to have gotten to see him at all, I said, “Sure, that’s probably it.” I took another few days off the meds, then tried again. For three days, bam bam bam, attacks all day, weakness, faintness, couldn’t move. I told him what happened. He agreed I should stop that medication. “Take two weeks off,” he said. “We’ll try another one.”
Summer is usually when I feel my best, so it’s frightening me to watch myself decline during the weeks when I can always count on considerable improvement. I realized the other day that in the last twelve months, I’ve sailed maybe three times. Might be more like one. I can’t recall. I can recall the moorage bill, but I try not to think about that. Whenever I ask Greg if it’s silly to have a tiny boat parked at a marina in a big expensive city, he says, “I’m not willing to give it up yet. Let’s give it another year and see if you get better.”
A real challenge is to find things that make me feel productive while I’m on the couch all day (looking around at the mess I don’t have the strength to clean up). So a few days ago I started a big archiving project for all my photos. I have an account over on Smugmug, and I’ve been creating folders labeled with the year, and then filling them with galleries of photos. It started out great, it felt like very meaningful work. These endless gigabytes of pictures, once organized, would be enjoyed by family and friends for years.
But then, partway through, despair snuck up on me. I kept finding photos of myself, with Greg with the kids, with my friends, and all I could think when I saw myself was, “Look how healthy she is.” That woman had no idea what was coming. But then, we never do, right? Life doesn’t have guarantees. We don’t arrive out of our mother’s womb with a data sheet detailing all our future travels, foibles, tragedies, adventures. If this journey comes with anything, it comes with a warning label. My situation could be a lot worse. I’m very aware of this.
Still, in that moment, looking backward in time, I felt so much grief. How much I wanted that body back, that could hike, or stand in the kitchen for hours making food or cleaning up. That mind without the brain fog, the ability to read for hours. And I was so fit! It isn’t that I think being fatter is so awful, but what that lighter body represents to me is the ability I had to exercise, and how great it felt. Back then, damn, you should have seen my calves. I loved my calves. My body took good care of me, then. I could walk, I could run, I could dance, I could bike for miles.
I can’t exercise that way anymore, and if I try to exert myself even a little, I pay for it for days. I’m never not in pain. When my Stanford doctor told me to stop exercising completely, full stop, it was a huge blow. When I told people about that later, some snorted, “I’d love it if my doctor told me that.” But it isn’t funny. I’ve taken a lot of anatomy courses, I know what happens to a heart that isn’t getting healthy stress through exercise on a regular basis. Fat by itself won’t kill you, but being sedentary will. Being told not to exercise frightened me, more than anything else.
Last night, I took my second anti-viral. I was supposed to take a small dose every day for a few weeks, and see how I adjusted to it. Within an hour, I was doubled over in the bathroom with severe cramping and diarrhea (a side effect of this one). I was like that until 3am. I woke up this morning and it felt like my guts had spent the night battling razor blades (and losing). This has gone on all day.
I don’t know what will happen. It’s become my mantra: I don’t know what will happen. If this illness is making me face anything, it’s the stubborn resilience of a bad idea: that my elemental force-y-ness never really died, that I will resurrect it, and use it to get myself out of this. But I’m learning that it isn’t my only tool. It never was. I’ve been reading about mindfulness meditation since I was a teenager, but have I spent the last twenty years diligently practicing being present? No, I practice present-moment avoidance. I’m really good at it. Gold medal, PhD, CEO of the company.
Well, I can’t avoid this. I can’t avoid the not knowing. Maybe the next drug will help, maybe it won’t. Maybe the nutritionist I saw will help, maybe she won’t. Maybe I’ll get worse. Maybe I’ll end up needing a walker or a wheelchair (and maybe that will be okay). Maybe I’ll get better.
Breathe. Look at how beautiful the bamboo is, waving in the backyard, tall and slender and making that lovely noise as they brush up against each other. A quiet, rustling song, sung between themselves. If we ever move, I will miss that sound. We’re supposed to cut the bamboo down, our neighbors will sometimes remind us of this, but it’s so gorgeous. I refuse. Let it grow as high as it wants.
I’m reading Jon Kabat-Zinn’s book, Full Catastrophe Living, for the millionth time. I bought my first copy in my twenties. I just got the most recent edition. I also downloaded the audio version to listen to in my car. It’s about dealing with crises, health or life or whatever arises, with mindfulness. It’s especially for people who are sick or recovering from something.
He talks a lot about the stress of feeling out of control:
If you have a chronic illness or a disability that prevents you from doing what you used to be able to do, whole areas of control may go up in smoke. And if your condition causes you physical pain that has not responded well to medical treatment, the distress you might be feeling can be compounded by emotional turmoil caused by knowing that your condition seems to be beyond even your doctor’s control.
The guy knows what’s he’s talking about.
Right now he’s teaching me the “attitudinal foundations of mindfulness practice”. Every one of these is hard. Of patience, he starts, “Patience is a form of wisdom. It demonstrates that we understand and accept the fact that sometimes things must unfold in their own time.” PREACH IT, JON.
But then he said something that really made me stop. This line, I circled it in the book. Looking back at my old photos of a person in a body that I no longer have, looking at friends and acquaintances and people on the street, people bicycling past me in traffic, even movie stars…wishing I could do what they do, travel around the world, move their bodies, live in the world engaged with a career, engaged in LIFE…crap, the sense of loss will just overwhelm me sometimes.
But then I read this, the thing I circled:
It is impossible to become like somebody else. Your only hope is to become more fully yourself.
It doesn’t have to be only a journey of loss. Loss is here. But maybe it’s also a journey of discovery. If I can be brave enough to accept what’s happening, maybe it will surprise me. Slow down. Look around. Just let the wind bend me a little, like the bamboo. I’ll try.
Categories: Chronic Fatigue Syndrome