I feel like if I’m going to talk about having chronic pain for the past 10 years, I need to also talk about The Wife. Like everyone else who gets married, we stood in front of our friends and family and promised to love each other in sickness and in health. Granted, we were both deep into our thirties when we married, but still, if you’ve been lucky, you don’t really think of the sickness part when you’re making those vows. You may joke about changing each other’s diapers or wiping each other’s asses when y’all’re in your eighties, but you don’t spend a lot of time dwelling on the logistics of the “in sickness” part.
My wife would, quite literally, walk through a mile of broken glass barefoot for me. She is madly in love with me and fiercely loyal. I call her “my little bulldog,” but really she’s more like a pit bull---dedicated to protecting me and making me happy. I’m not bragging; it’s just the way it is. Her slavish dedication to my happiness can best be illustrated by this amusing anecdote. After we’d been together for about a year, we were picking around on the internet and found a site that has optical illusions---like one person sees an old man and another sees a young girl? Those kind. We get to the picture below and as I scream “ME!” she screams “YOU!” at the *exact* same time.
Proof that, at any given time, my wife and I are thinking about the same thing.
When this whole pain with my feet started, we were both optimistic. “We’ll just find the right doctor who will give you a diagnosis and then we can treat whatever this is,” we thought. At the time, I was young enough that there’d never been anything seriously wrong with me, so I assumed this would be a no brainer.
Fourteen doctors, two MRIs, several X-rays, a million tests, painful experiments where I was electrocuted in my leg muscles with tiny shocks, weird shots, some physical therapy, some acupuncture later...we still didn’t have an answer. The best they could come up with was “peripheral neuropathy.” At first I was excited that someone had named it, but then I quickly realized that all these geniuses had told me was the equivalent of “you have an itch.” As to what was causing the itch or what to do about it...well, sorry, they couldn’t help me. The Wife says with each doctor she could pinpoint the exact moment, as I was telling my story, that the doctor gave up on me. Everyone I went to saw me in the 10-minute slot allotted to patients these days, and once they figured they couldn’t solve my problem, they pushed me out the door or, if I was lucky, sent me to another specialist and the cycle started all over again.
The Wife went with me to *every single one* of these appointments. She filled in details when I got sick of repeating my story, she took notes when she needed to, she took off work, she dropped me off at the front door and went to park the car miles away, she held my hand as I looked out the window and wept silently on the car ride home after another doctor had shrugged at me and foisted me off on the next specialist.
One of the things people don’t really talk about when they talk about chronic pain is how anxious having pain 24/7 makes you. Suddenly, it’s not just “let’s go to dinner with some friends.” It’s “Will we have to park far away or will there be parking close to the entrance? Will the restaurant be packed? Will there be a wait where I have to stand for a long time? Will the restaurant be loud and crowded? My nerves are frayed because I’ve had a high pain day, and I don’t think I can deal with bright lights or loud rooms. Will we be going out after dinner? If so, that means I’ll have to be the wet blanket that wants to go home early.” And on and on and on and FUCKING ON. All the shit you never once had to think about when you were pain-free and carefree now pushes to the forefront so that you don’t think about the positive aspects of spending time with your friends; all you see are the roadblocks.
The Wife and I were arguably two of the most social human beings before all of this started; she still is, but I have not been so lucky. Over the years, my pain has made me more isolated, more fearful, less tolerant of external stimuli, and generally hermetic. If I’m leaving you with the impression that this shift in my personality hasn’t affected her greatly, then I’m not telling the story right. Chronic pain affects the sufferer and everyone around them, even friends, but the spouse is the one who bears the brunt of mood swings, flaring tempers, crying jags on the bathroom floor, the sight of their bae buried under the covers for days on end. And if I’m leaving you with the impression that because The Wife is incredibly exceptional, everything was effortless...again, I’m not doing this story justice. She is, hands-down, the most exceptional human I have ever encountered in terms of her goodness and her capacity to love. And still there are days when she hates me. (She will, of course, deny this because Her. But don’t let her fool you, she hates me sometimes.)
She, too, got frustrated, angry, depressed, exhausted, and was filled with despair. Before we really understood the situation and how lifelong this would end up being, she got angry when I didn’t want to go out; she got frustrated by my desire not to get out of bed; she got fed up with how I was or wasn’t approaching the problem; she was exasperated when I couldn’t carry my weight around the house or in the relationship.
This was not what the beautiful brochure promised her when we were dating. I was no longer the fun-loving party girl with a mad zest for life that she’d married. It was a bait-and-switch of the worst kind. So in addition to being depressed about how radically different my life and personality had become, I was also depressed over the guilt I felt for how I was affecting her life.
But much like a service dog who doesn’t start out his life leading blind people across the street or opening fridges for their elderly master, it was a learning process. It may seem weird to compare my wife to a service dog, but she is as fiercely loyal and protective as any labrador retriever. And much of her waking hours are spent worrying about and tending to me. She fusses over me like an Italian grandmother, which took some getting used to on my part, especially when my pain was at its worst. I didn’t want someone hovering and fussing; I just wanted to be left alone. When I was in a particularly deep depression, she came home one night and told me she’d had this great idea: she would collect stories of things that happened to her during the day, then bring home her notes so “you can use your hilarious story-telling skills to make it all sound awesome.”
Think about that: my wife was literally telling me that she would go out into the world when I could not, bring back life itself, and lay it at my feet so I could turn it into something that might make me happy. She was literally offering to bring me the world.
For my suffering is her suffering too. She takes on my worries, fears, and burdens and makes them her own. She bounces around me like Tigger some days, willing me into a brighter mood in spite of myself. She gives me “foot spa days,” where she puts my aching feet into a foot bath and gently scrubs and pampers them. She brings me flowers and ice cream. She has a smile that lights up the room, and it’s pulled me out of a funk more times than I can count. Sometimes she just says “Do you want to be the little spoon?” as we’re lying quietly in bed and she knows I’ve had a rough day. Yes, honey, I always want to be your Little Spoon.
I truly don’t know how I would have made it these past 10 years without her. She is my rock, my truss, my armature, my foundation, my pillar, my stave---and whatever other synonyms there are for “unwavering support.” This illness is, by far, the most life-changing thing that’s happened to me. It’s terrifying, unknown, and crippling.
But she’s right beside me, holding my hand. That’s a gift I’m not sure I can ever repay.