I hold less of them.
Dipping into tomorrow’s,
I steal my own energy
for a fleeting moment of pride and accomplishment.
I’m 21 years old.
A year ago,
I hiked 7 miles in 5 hours.
It pains me to hike up my driveway.
The descriptive theory for people with disabilities and chronic illnesses to explain the phenomenon of sparse physical and mental energy.
Each activity in one’s day requires spoons, or units of energy, to complete it. For example, driving into town may take one or two spoons, shopping for a pair of pants may take four or five spoons, doing the dishes may take three spoons, etc.
Each day begins with a limited amount of spoons, depending on one’s fluctuating daily health.
As it gets later in the day, if one has used up all of that day’s spoons, they may dip into the next day’s spoons, borrowing from the next day’s allotment.
Although not actually mathematic, and not objectively quantifiable, spoon theory provides a way for those with disabilities and chronic illnesses to visualize and understand their body-mind’s daily capabilities.
I had heard of spoon theory. Seen some friends use it. Researched it. Thought I understood it.
And then I couldn’t get myself out of bed the day after a doctor’s appointment or days after shopping excursions. Had to prepare myself for staying up late on New Year’s Eve and hedge up my stamina to withstand two hours of a holiday party.
Only then did I internalize spoon theory.
In the midst of struggling to explain to loved ones my inability to hold a conversation with them after a draining day, while listening to an old podcast by a chronically ill spoonie explain her spoon experience, I was able to see my own spoon counter in my head — able to understand what my body-mind had been trying to show me.
I’m at an impasse. In between: feeling as if I have to put on a smile, push through the aches and pains, be a productive family member, friend, and partner; and searching for the space to complain without burdening, to be understood, to be authentic.
I have yet to find the latter.
Don’t get me wrong — my family, friends, and partner are supportive, and I am eternally grateful to them. But their support and understanding can only go so far.
I question everything I say, wondering which one is the comment that pushes them over the edge and into annoyance. I think over my thoughts ten times before I say them, making them as polite and meek as possible so that they don’t sound harsh or kill the moment.
The Ahmed-ian killjoy feminist in me immediately berates myself for censoring the painful and interrupting comments. But the whole of me has to suffer the comment’s consequences and the subsequent forlorn social environment long after the spurt of killjoy confidence is gone.
I gaslight myself into being productive, engaging in conversations and activities I just don’t have the energy for, and committing to things I know will ruin me for days to come.
I am left questioning how much if this impulse to please and push through is due to a) my socialization as a female in Western society which has instilled in me the demand to accommodate everyone but myself, b) my membership in the evangelical church which has taught me to believe that my faith will overcome my material world so therefore I must cover up the pain I’m feeling as it will be taken as evidence of disbelief, and c) my own nature to avoid confrontation and bothering people.
I am left with questions:
Am I complaining too much?
Am I annoying people?
Do people think less of me?
I am left at the mercy of others for when I cannot do things for myself, but I am also left at the mercy of myself to speak up when my agency is being trampled on.
How do you claim your independence while simultaneously asking someone to open your water bottle?
How do you ask for help speaking to doctors while demanding the respect you’re due when the doctor addresses your mother and not you?
How do you make others understand that, although you’re not verbalizing your pain every moment of every day, it’s always there, relentless and unending?
I wait for the test that finally comes back positive.
I wait for answers.
I wait to be able to resume my life.
Everyday is a lesson on patience: extending it to myself and others.
Everyday is a lesson on humility: knowing my limits and asking for help.
Everyday is a lesson on grace: accepting the situation, curveballs and all.
I sit, I think thoughts that my mouth refuses to say, I watch my friends graduate and move away and get on with their lives.
I put on a smile, suppress the tears that are always just behind my lids, dip into tomorrow’s spoons, and go out to dinner with my parents.