1. A full night’s sleep
From start to finish, I want the eight hours recommended by health practitioners for functional adults. I’m talking the complete sleep cycle: light sleep, REM, and deep, restorative sleep. (Especially that deep sleep that resets the brain and body to the manufacturer’s original settings) A drop into such profound rest that there’s no question upon waking that recuperation was had. Such a deep unconsciousness that partners, significant others, children, and pets question whether I’ve expired. (Seriously, they need to conduct life checks)
Or at least two hours without tossing, turning, or waking up.
2. Two consecutive days without pain
No more of this “one good pain day” nonsense; I want two—in a row! Enough hours to accomplish an ordinary person’s list of work, chores, socializing, and relaxation. With no need to sit or lie down and catch my breath because electric needles have taken up residence in one or more limbs. A moratorium on pain signals for 48 hours in which I can experience what everyone else knows as “routine:”
Complaining about workloads
Procrastinating over chores because they’re boring
Discussing something other than medical annoyances (there has to be something else out there)
Lazing on the couch out of choice instead of necessity
If two days is too much to ask, can I at least have a moderate day after my “good pain day” to prepare for the bottom to drop out?
3. A “normal” meal
A menu free of restrictions or omissions; the world’s pantry laid bare before me. I crave the opportunity to fill my plate with food without hesitation about what that bite or swallow may cause. The freedom to eat as a human being. To order without researching ingredients or inquiring after protein counts or sugar quantities. A blissful ability to cram snacks and desserts between my teeth recklessly as a child. One meal without the need to negotiate taste and digestion with my stomach. Nothing more than the chance to consume foodstuffs out of pleasure instead of necessity.
For fuck’s sake, I want to eat bread without puking!
4. The opportunity to wear a cute outfit
I am not a Millennial. Nor do I belong to Generation Z. My drawers full of sweats and pajamas do not turn me into a youth romping in the great outdoors. They’re a statement of the current condition of my failing body. I am one step up from the homeless raccoon scavenging through trashcans. And all I want is a day where my body is comfortable enough to tolerate the binding of my most adorable clothing. Zippers and straps and clinging fabrics that ordinarily send me screaming for a hot bath, experienced with the comfort of the baggy looseness of an aging flannel. Hair swept up with bands and combs—not tearing holes into my scalp within seconds. A chance to appear as a functional human among the world’s adults.
Could someone at least find me a cute sweatshirt to wear?
5. An empty medicine cabinet
I no longer want to own my weight in pill bottles. A one-woman contribution to the plastic crisis of the world. Neat rows of orange and blue (or whatever color the pharmacy has chosen this month). Compressed white dust guaranteed to accomplish little more than aggravation. But necessary for bodily and emotional function. I want them to disappear. Empty shelves where the chemical compounds once stared back at me in impotent silence. No further dependence on the cultivated chemistry of corporations.
Or does that verge too much on asking for a cure?
6. One engaging weekend
The world bends its eyes toward the weekend. Getaways, picnics, vacations, barbecues, events; planning penciled into the calendar months in advance. My weekends stare blankly back at me. They are understood as days of recovery, reserved for my body to cobble together the pieces and sew them into some semblance of function. No fun for me. But I long to add one weekend to my schedule that belongs to nothing but activity and engagement. Two days spent racing from moment to moment (pain be damned). A moment out of the year claimed as my own where I care nothing about the damage wrought on my brain and body. A mere 48 hours spent in oblivion to the need to return myself to the zero setting.
I reserve the right to complain about the after-effects of any such weekend.
7. A doctor appointment with answers
The doctor’s office is unavoidable. Specialist after specialist (the PCP thrown in for flavoring), test after test conducted to determine that nothing is out of the ordinary. Or not extraordinary enough. I acknowledge the necessary evil. All I long for is a single appointment where I walk out with a definitive answer in hand. A confirmed diagnosis. A plausible treatment (and not a suggested medication in a long line of possible medicines). The name of a smarter specialist. A reputable study confirming a medication’s actions.
A shiny rock that eats sickness.
8. One free fall
I can’t walk without tripping. My lack of grace is part of my unending charm. It’s never going to improve, no matter how often I’m sent to the welcoming arms of physical therapy. There’s no coordination between my brain and lower limbs. And too loving a relationship between me and gravity. But the intense response to each of my spectacular spills is too much. I deserve to make at least one fall without any resulting drama. One chance to sprawl inelegantly across the floor or ground, scraping skin raw, without hearing frantic cries and the rush of footsteps. Allow me to lie there and embrace the humility of my inherent clumsiness with a trace of dignity. Laugh with me as I attempt to discern where the pain clusters most within my joints and muscles. But let me embrace my tumble that once without a production of horror.
Unless it happens to be down a flight of stairs.
9. A protracted scream
My world is a disaster area of pain, disbelief, and fatigue. I can’t go more than a few moments without a symptom announcing itself—day or night. Peace is a nebulous concept in my body. I trap the experience of life within this nightmare tight behind my teeth, my jaw a constricted prison of strain. There is never a single moment when I express the truth of my existence. All I want is the chance to distill my life into a single scream. One scream to distill the insane madness of having no break from constant self-inflicted torment. To give voice to the victim of my body’s unceasing battle and express the truth encased within my skin. Nothing longer than I have breath for (otherwise, even I fear it would never end).
I suggest you warn the neighbors ahead of time.
10. An extra spoon
I parcel out my store of energy and conscious thought so carefully throughout the day. So much to get my body upright and presentable in the morning. Too much to remain coherent and functional throughout the day. And a dwindling stock to push me through the end of the day’s activities. There’s never enough. And the unexpected robs me of my carefully prepared program. What to sacrifice to keep myself moving forward? A shower? A smile? The conscious stringing together of a sentence? Just one more of those precious spoons—gained from the mysterious depths—will surely give me the strength to solve all of my problems. (At the very least, it’s the answer I whisper to myself as I contemplate whether I need to get dressed or make a phone call) One more element of energy. Just one.
Like a drug addict craving another hit.