Okay, okay, okay. I know. It’s time for a session of truth telling. So, let’s get started. Scrape. That’s the sound of the chair being pulled out, and thud, that’s me being shoved down into it. Ping. Somewhere above, a bright light has blazed on to “help” jog my memory about the events of the last year.
I’ve joked before about not having an interior voice of reason and intuition that lets me know how many commitments or tasks to take on. (http://chronicville.wordpress.com/2006/06/). So, I thought it best to outsource my capacity to say “no” to the people who want to see me when I’m feeling exhausted. Like so many other businesses, I reasoned, I should look to a South Asian call center for help in acquiring that piece of myself that acknowledges that I have little energy and even less time available. In Bangalore, I said, I would find Rajesh (who goes by Sean for his American clients), and would put him in charge of saying “No,” firmly but always kindly.
That worked at first, but I’ve come to realize that saying “no” as an acknowledgement of my limitations isn’t enough. Sometimes an even harder look at things is required. So (at the risk of over-literal readers taking my sorry attempts at humor too seriously and deciding that my main problem isn’t having sarcoidosis but multiple personality disorder) I’ve now employed Viktor. Viktor has a shady past, and can be a bit brutal in his techniques. But I think that’s what I need right now.
As you can see, my posting on this blog have become much more erratic and sporadic during the past year. Weeks and sometimes months go by between me writing something new. I won’t lie. Producing these pieces is a lot of work. I try to hold myself to a standard that, in reality, isn’t very “blog-like.” This is due, in large part, to my inner perfectionist (which, for the sake of preventing further confusion, I will leave unnamed – though feel free to make suggestions in the comments). As someone who once earned my living by writing, I cringe at shoddy, haphazard prose—especially when I’m the one producing it. I could keep readers apprised of my sarcoidosis-related events more regularly if I simply posted snippets more like my Facebook “status updates” than like the formal essays I try to produce here. (Which reminds me, if any of you want to be in touch via Facebook, where I do post shorter, more regular updates, look for me there—Rebecca Stanfel— and send me a “friend” request.) Following this strategy and changing the format and feel of my blog would certainly cut down on my work load. And it perhaps would serve as a balm to the nagging interior voice (also unnamed) that tells me, “You’re not getting paid for all this effort,” and “No one appreciates all the work you put into these pieces.” I know people read Chronic Town because I have access to the record of “hits.” But it’s not as though my comment section is overflowing; without the data from my server, Word Press, I truly would feel as though I was writing—and putting my heart, as well as well as some sweat—into the proverbial void.
However, making Chronic Town more like a standard blog would go against my mission. Although I’ve never overtly stated the goals I have for this Web site, I hope it’s apparent that I don’t think of this blog as a personal forum for me to vent to the world about the dirty details of my life. Rather, I have tried to coherently convey the reality of living with a chronic illness, of attempting to balance the demands imposed on me by sarcoidosis with the demands of family, work, and daily life. I have hoped that it is not just good for me—but good for my readers— to have a forum to communicate freely about how damn hard it is to be ill and yet refuse to become an invalid.
Over the past four years of maintaining this site, I have gotten e-mails and comments that have let me know that I am not the only one who has experienced the topics I write about. I am not alone in the feeling of constantly juggling nine balls of different shapes and sizes, while blindfolded and sagging with exhaustion. Those of us who are chronically ill (and plenty of others who aren’t) can’t even tell which ball is sailing towards us—and then the ground— because of the blindfold. Our hands ache, our stomachs churn. Who are we letting down if this one ball crashes and explodes into sharp shards around us: our children, our partners, our employers, ourselves? Can’t we just rest for a while?
My unplanned plan with my blog—the realization that emerged after I developed a rhythm during the first few months of posting my thoughts—was to forge a community for those of us stuck in chronic town: the new emotional landscape we have all been cast into once we were diagnosed with one of those nebulous chronic diseases that make doctors furrow their brows and then shrug their shoulders in resignation because no one knows how to cure (or sometimes even treat) them. Maybe I’m just a control freak, but it feels as if I were to change my philosophy and turn my blog into inchoate rambling lines about my life, I would be disrespecting the community I have inadvertently created. I want to be a voice in the wilderness that gives thought to the condition of chronic illness. I have felt that I deserve, as do you, coherent examinations of the various situations in which we find ourselves, as people with not just sickness, but also families, jobs, hopes and dreams. We aim to be cured, whether we follow the medical philosophy and protocol of Trevor Marshall, or whether we settle on “conventional” medical treatment. Either way, whether we are swallowing prednisone or Benicar, our bodies ache, our lungs work without full capacity, our hearts follow new and frightening rhythms, our skin erupts, our eyes are damaged, and our nervous systems become downright anxious with sarcoidosis inserting itself into neural pathways. If we can’t be cured, then at least we will keep living—parenting, working, walking, simply being—whatever our prognosis may be.
So, I have opted for silence lately— not because I haven’t had any news to report or issues to mull over, but because…. Because—and here’s where I need Viktor to inject me with the truth serum he extracts from his attaché case—I haven’t been physically capable of writing this type of essay. Why is this a big deal? Why bring in Viktor and subject myself to an imaginary interrogation? Because I have never been as incapacitated by my disease as I have been lately. If you’ve been reading Chronic Town, you’ll notice that after I haven’t posted for a while, I’ll resurface and usually explain my absence in cyberspace with a line or two about lacking time and energy, being depressed and thus wanting to isolate myself, or being caught up with other family events. It’s all true. But it is only a surface truth. I have skimmed a piece of reality from its totality, just as my mother used to spoon off the risen cream from the unpasteurized milk we’d buy or barter from our dairy farmer neighbors in rural upstate New York. Like cream will do when left out too long, though, my partial truth has curdled.
I can’t write. It’s not just that I lack the will; it’s not just that I’m feeling glum. I can’t. I am too sick. Last week, on one of my “good weeks,” those seven precious days that recur only twice a month on my current regimen of getting chemotherapy in the hope of curing my disease, I had a “relapse.” I literally fell over in my bedroom on a bright summer afternoon, when the symptoms related to my neurosarcoidosis suddenly came back. I felt sucker punched (hell, I was sucker punched) as the vertigo returned; I watched the world spin in shiny whorls around me through eyes half-blinded by the searing headache I had lived with for nearly a year, but that was supposed to be gone (or at least going) by now. It was like I had survived a relationship with an abusive, drunken lover. I had left him, had even changed the locks, but suddenly he was back, smashing in a window and lunging for my throat, spewing his foamy breath over me. I ended up in the hospital for a few days. The head pain became so intense I couldn’t sleep, no matter how many narcotic pain killers I stuffed in my mouth, no matter how many times I pressed the little button on my morphine pump. The doctor couldn’t explain the sudden onslaught of all the symptoms that characterize my neurosarcoidosis. Perhaps I had overdone it the week before when I diligently cared for my son, Andrew, after his tonsillectomy; perhaps I had created a weird circular pain syndrome because I was tapering off pain killers; perhaps sleep deprivation played a role.
Whatever the cause of my relapse, all I could think was, “it’s back.” And for two days I wanted to die. For nearly twelve months, I have biweekly ingested poisons in search of a cure, poisons that make me feel sicker for the week after I get them then I ever did before I started on them. True, the chemo seems to have dispelled the worst of the vertigo and headache–but if those can recur at any moment (as they did last week), then where am I? I am left with the smashed glass from the broken window, the bruises from the drunken lover’s hands on my throat, the trepidation that I am no longer safe, no matter how many locks I put on the doors, how many boards I nail across the window.
A year ago, maybe six months ago, I might have shaken off what most people would probably think of as minor setback. Progress isn’t necessarily linear. Two steps forward, one step back; take life one day at a time; live in the moment. You’ve been improving so much in the past five months. You don’t want to go back to how things were before the chemo, right? Yeah, yeah, I know that song; I’ve been humming it for the past five years in chronic town.
But I’m too tired and too burned out to put this one backward step into any kind of perspective. My exhaustion isn’t entirely psychological in nature either. The drug regimen I have been following for the past year is startling for its brutality. The cytoxan (literally “cell killer”) suppresses my immune system’s function at its most basic level and leaves me feeling like I’ve simultaneously gotten a beating and contracted the world’s worst stomach flu. On top of that, I still get a monthly infusion of Remicade (whose side effects are less immediate than the chemo’s–I’m just at higher risk for contracting various cancers down the road) and I’m still on good old prednisone—a third immunosuppressant. With all this suppression of my immune system, I am almost constantly sick with a sinus infection or bronchitis—and then on powerful antibiotics that have their own host of side effects.
“Why,” I’m sure you’re thinking, “would anyone be idiotic enough to do all of that?” Good question. Lately, I ask it of myself more days than not. However, there is what passes in sarcoidosis circles as a theory behind my treatment plan. There’s hardly any data on drug protocols and their efficacy in fighting the kind of sarcoidosis I have—the chronic, systemic form of the disease that afflicts vital organs (in my case, my nervous system and my heart). There are some studies that have shown that my unholy trinity of immunosuppressants can knock out neurosarcoidosis. When the sarcoidosis guru I saw recommended it, I agreed. I know some readers vehemently oppose the theory behind and the practice of this treatment. But they weren’t in my shoes.
By last summer, when I began this regimen, I’d been trapped in bed for nine months—in constant severe pain. Walking to my bathroom was all I could manage. There were weeks I couldn’t navigate my way down the stairs to eat a meal with my family. I was ready for extreme measures, despite the future health risks. My then four-year old son was growing up with a mother he could only visit in her darkened room. If I wasn’t breathless from the head pain, I was loopy from pain killers. He’s five now, and although he tells me every other Tuesday, “I hate chemo, Mommy,” because I disappear for at least five days into nausea, vomiting, and tiredness so profound it feels as though I have been infused with barbiturates along with the cytoxan, I’m much more present in his life than I was before.
“So,” Viktor muses, “you’re saying it’s all worth it?”
No, I’m not.
“But your point seemed to be that on your ‘good’ weeks you are improving, yes?”
Right, I guess. I was having fewer headaches, less vertigo and less falling over, more clarity in my speech, more writing. But I am so deeply burned out—from drug infusions, from exhaustion, from my bones hurting from the sarcoidosis still inside them, from summoning up the energy to write, from putting the “what ifs” out of mind and focusing on each day, from being in the hospital.
“Why are you allowing yourself to descend into self-pity?” Viktor asks.
Because I’m incapable of staving it off. I thought I made the right choice when I signed on for chemotherapy. It likely was the right choice, but its cost is so high it frightens me. I was hospitalized six times this year before this most recent one, simply because the combination of toxic drugs to combat the sarcoidosis has eroded my intestinal system. My son is traumatized from my latest stay in the hospital. The onslaught of symptoms was so sudden that it made all of our heads spin. My husband, Jay, has the far-off look I would imagine a hostage has in his eyes after four days looking down the barrel of a gun.
“So what to do?” Viktor inquire.
I’m too tired to decide what to do. I have three more chemotherapy doses (six weeks) before I return to Cincinnati to be reassessed. I’ll have them–mostly because I’m too beaten down to think of another strategy. I am in many ways more incapacitated by both my disease and its treatments than I was a year ago.
“Ah,” says Viktor. “Truth.”
Yes, a painful one that turns inside me like a woodscrew entering bone.
“And the blog?”
I don’t know if I should shut it down, change its format, or keep plodding away on it.
“Ah,” says Viktor. “Another truth.”
Yes, another one.
After my session with Viktor, in which the whole ugly truth emerged, I should probably turn my decision about Chronic Town over to Sean. They say the truth will set you free. But it’s left me feeling empty and tired to my core. I don’t know if I will ever get well, if I will ever grasp the elusive remission from sarcoidosis that I have kept speaking of and holding on my tongue like a mint. My recent setback has dissolved the notion of being fully well—of having the capacity to write in this space, run around with Andrew, meet my husband for lunch, and never have to go for drug infusions and then recover from them—quickly as that mint would dwindle away.
Thanks, Viktor. Now go back to Slovakia.