Dear Lily June,
“Imagine smiling after a slap in the face. Then think of doing it twenty-four hours a day.”
― Markus Zusak, The Book Thief
One of the most annoying pains in the neck when it comes to having a chronic pain condition is having to chronically explain what your condition is and why you have it and what it does to you on a daily basis. When people ask me how I’m doing, I have a tendency to go with the social flow, sunnily chirping “Fine” because that’s what the askers want and/or expect to hear anyway.
If you bend their ears with a catalogue of complaints about what hurts and how, you’re likely to see them break into a grimace of their own, eyeing up their watches like a crowd caught under a cloud might eye an umbrella or pretending to answer their silent phones. One of the hardest parts of being in chronic pain is feeling alone.
Of course, when I read that 50 million+ people suffer from chronic pain just in America, I find myself wishing I were more alone than I am. They say Misery Loves Company, but the thought of that many other miserable people, dragging their sore bones and swollen joints and tense muscles and stinging skin out of bed makes my heart ache more than my body, and I hope beyond hope that it’s true what I think in my theory: I hurt so that someone else doesn’t have to.
Even on my worst days, dealing with people who are pains in my @$$, I wouldn’t willingly choose to trade places or inflict my condition on anyone. Sometimes, I engage in a bit of cerebral gymnastics, imagining the person who doesn’t have to feel pain because I do:
- Is there an eighty-year-old runner who can’t believe how smoothly her body still moves?
- Is there a forty-year-old father–waking with his back as straight as an exclamation point rather than as twisted as a question mark–who can pick up his daughter more easily and give her the piggy-back ride of a lifetime?
- Is there a twenty-year-old girl, around the age I was when I was diagnosed, who is throwing caution to the wind and trying to become a dancer, waking in the cold morning dawn to practice when her joints are still stiff and stretching them until they burn like a fire inside of her?
- Is there a ten year old boy whose skinned knee is something he reacts to no more than a light gust of wind, who props the bike back up on its side and takes off again?
Could it be anyone, Lily, who was spared a gallon of suffering because I dutifully measure mine, cup by cup by coffee spoon, each day? Could it be, most miraculously, you?
“The pain scale measures only the intensity of pain, not the duration. This may be its greatest flaw. A measure of pain, I believe, requires at least two dimensions. The suffering of Hell is terrifying not because of any specific torture, but because it is eternal.” – Eula Biss, “The Pain Scale”
I have Interstitial Cystitis, sometimes called Bladder Pain Syndrome, a condition that puts my quality of life on par, supposedly, with those diagnosed with rheumatoid arthritis, chronic cancer pain, or those on kidney dialysis. It’s a bleak prognosis, one that lends itself, in the literature of how extreme-case patients feel, to thoughts of suicide.
The patient in the video below which I found on this courageous mother’s blog, for instance, claims it was almost worse for her to learn she didn’t have cancer; it meant she would have to live each day with pain that was chronic, toxic, miserable and worst of all, hopelessly incurable:
Most days, I try not to remember what it was like before I had pain. I’m often successful; after all, this pain has been my “new normal” for over a third of my life. Eventually, I will have spent more time in pain that I will have without, and then a comparison with time I haven’t had since I was practically a child would feel irrational and insane. Aging will level the playing field out, and it will come to a point where my senior citizen friends and I will agree, spooning sugar substitutes into our cups of herbal tea, that Everyone’s body felt better when they were younger, right?
I am only in trouble right now when I compare my pain level with others whose bodies are also thirty. I was in far more trouble in my twenties, and in the most when I compared my pain with those who were also, at the time of my diagnosis, nineteen. Then, to have pain like a urinary tract infection with no infection so that it never goes away was a lot more daunting. Teenagers aren’t supposed to get up in the night twenty to thirty to fourty-eight times to pee. Teenagers aren’t supposed to wake up aching. They aren’t supposed to feel that way.
“It would be better to die once and for all than to suffer pain for all one’s life.” ~Aeschylus, Prometheus Bound
I think one lesson pain has taught me, though it’s taken the past eleven years to glean, is that I’m not being punished for something. Pain derives ultimately and etymologically from the Latin poena, which literally means punishment or penalty. And for a while I lived like that, imagining I’d done something that the cosmic score-keeper disapproved of. I imagined a life lived by greater acts of charity might not inspire such shocking stabs with every act of urination. If that were true, though, Mother Teresa, a woman who helped those dying of tuberculosis and AIDS and leprosy, wouldn’t have experienced so much as a headache.
Instead, towards the end of her life, she suffered from multiple heart attacks, at least one of which might have been brought on by pneumonia, and another which may have been the cause for a fall where she broke her collar bone, all in the same year in which she caught malaria. So much suffering, in fact, did this saintly woman experience that the Archbishop of Calcutta suggested an exorcism in case she was under attack by the devil. But this doesn’t seem to fall in line with Teresa’s own ethics, as she was the kind of woman who believed that suffering was holy and that it brought the sufferer closer to Jesus. She told a woman dying of cancer that pain was like “the kiss of Jesus” (to which the woman responded, “Mother Teresa, please tell Jesus to stop kissing me.”)
I’m not religious enough to believe the lightning strikes that send electric webs of pain skittering over my bladder as I lay in bed at night, clinging desperately to the dream of sleep, are in any way some kind of urinary stigmata. I’m at the point in my life that I neither feel cornered nor chosen, persecuted nor blessed, for what I have to go through. Everybody wrestles with their own demons: interstitial cystitis is merely one of mine.
I do not believe, like Aeschylus, that I would be better off dead, though there have been times I have begged God, the universe, the Devil, and any doctor who would listen for relief and, if none, release. But I try to keep things simpler than what might happen in the afterlife and whether or not my body will be delivered. On my smaller scale, a good day is measured by a night where I don’t lay awake so long my world shrinks to the size of a bladder, the lining of which has been stabbed like the arms of paper dolls so many times, they can no longer hold themselves together.
“Life is pain, highness. Anyone who says differently is selling something.”
― William Goldman, “The Princess Bride”
I first learned about the Spoon Theory from this savvy storyteller who refuses to be defined or limited by her own chronic inflammatory disorder. The initial article that crafts the theory, invented by Christine Miserandino to explain her life with Lupus to a friend over dinner, can be found here.
Suffice it to say, the theory goes something like: If you have a chronic illness, you’re given a limited amount of spoons by which to get through your day (where spoons, in this formula, equates to energy), and every time you perform a simple task that someone else can do with relative ease, you surrender a spoon. Those with chronic conditions, the argument goes, start off with less spoons than the average “diner” and spend the spoons they do have more quickly.
I dig the extended metaphor, Lily, but I don’t know if I buy it completely. I don’t have Lupus but IC, so I don’t know about the comparative quality of life issues (and I’d never presume to speak to a life experience I haven’t yet had). I can tell you I do believe I live my life with likely more physical pain that the average person does and I thus feel I have relatively less oom-pah-pah and zippity-do-dah to get around on.
I like to sit down more often, and I’m less inclined to go explore a remote destination like the Katskhi Pillar in Georgia, for instance, unless I know where every bathroom is at any given minute within a thirty-second walking distance from me.
But to say the average person’s spoon count is unlimited seems unfairly unsympathetic to me. True, some days may see some bodies piling up mountain peaks made of spoons, like some freakish Martha Stewart meets Mount Everest adventure in carabining with twisted ice tea stirrers. But Lily, some days, even completely healthy, you may find your spoon drawer completely depleted before you thought you used a single one.
When I was seventeen, and my first ever boyfriend had broken up with me, I had one spoon, and it was plowing through a tub of ice cream. I was so depressed, it was as if every bone in my body were made of a Ginsu knife, and each step I took cut into my heart like it were just a slab of meat. I had no chronic condition then other than that of being human.
That heartbreak would eventually heal and I would, to the disbelief of any teen who has ever been dumped, find love again of the more permanent variety. But at the time, if someone had told me I could do anything I wanted to do–that the pain was superficial or pathological–I would have tried to stab them in the eyeball with my one remaining spoon.
I don’t know that it’s as dire as The Princess Bride quotation or that I’m skeptical enough to believe that anyone not admitting to the pain of life is hocking something. But I do believe pain–like time–is a relative thing. And it was supposedly Einstein himself who described his theory something like this: Put your hand on a hot stove, and a minute feels like an hour. Put your hand on a hot body, and an hour feels like a minute. That’s relativity.
All of which is to say that the pain I feel coursing through my body as I lay awake in the night can seemingly disappear into the ether if I hear your own startling pain cry. And then I move with a speed that might otherwise trigger bladder spasms, and I can’t even feel that I have any organs other than a heart that is beating a mile a minute. And then if I see it is something simple like you’ve scratched your own cheek in the night, the relief I feel is greater than I have powers to describe.
But then the guilt that it was my responsibility to have cut your nails in the first place stabs me with a grief that is unlike any physical pain I have lived with to this day.
And I would give anything to see you smile, Lily. And if the token to purchase your elation were the pain I’ve felt for eleven years and will likely experience until the day I die, I would pay it. It’s those kinds of mind games that allow me to keep on living with the pain and to fear the words of Chuck Palahniuk in Diary:
“It’s so hard to forget pain, but it’s even harder to remember sweetness. We have no scar to show for happiness. We learn so little from peace.”
Oh please, little Lily, whatever your bodily limitations might be someday, don’t let those words be your truth. I know when I look down at my Cesarean scar, so close to where my bladder pains me, those words aren’t, literally, true for me. The skin is still numb almost three months after the surgery, but it is a scar of happiness for me. A reminder that great joys can be born of great pains, too. You, love of my life, are living proof.
- “Soup Spoon” by Donovan Govan. – Image taken by me using a Canon PowerShot G3 (reference 7867).. Licensed under CC BY-SA 3.0 via Wikimedia Commons – https://commons.wikimedia.org/wiki/File:Soup_Spoon.jpg#/media/File:Soup_Spoon.jpg
- “Katskhi Pillar” by ლევან ნიორაძე – http://www.flickr.com/photos/leonio/7544243774/. Licensed under CC BY-SA 2.0 via Wikimedia Commons – https://commons.wikimedia.org/wiki/File:Katskhi_Pillar.jpg#/media/File:Katskhi_Pillar.jpg