there is no rock bottom

and we don't need one anyway

I think we need to talk about worst-case scenarios.

Rock bottoms

The “at least” of it all

Sometimes it couldn’t possibly get worse, and then it does.

Or it becomes something else. Another event happens, neither worse nor better. Just different.

I think we need to get honest about the fact that we often use real-life things that have happened or are happening to real-life people as a point of reference for our own progress, on our own path, within our own journeys.

I shot up like a rocket in bed at 3:33 am (seriously) recalling a conversation that took place in a handful of iterations over the past few days. It went something like this:

Concerned, well-intentioned loved one: “How’s the house hunt going? Have you found a place?”

Me: “Not yet, we’re looking, but we don’t want to just settle for any place.”

CWILO: “That’s smart - it’s good to think ahead. You’ll want something spacious, comfortable, and accessible, in the worst-case scenario.”

Let’s take a moment with that.

Worst. Case. Scenario.

What you mean is a wheelchair. What you mean is if I can no longer do stairs, or need additional medical support because I am unable to care for myself alone.

What you mean is the life that many of my friends, colleagues, past lovers, and mentors live is YOUR idea of a worst-case scenario.

What you (might even) mean is you’d rather be dead than in a wheelchair.

Like let’s really breathe into the discomfort of this reality.

Nobody said “a flexible lease for your partner in the event of the worst-case scenario.” (Death.)

No one said “a living will in the event of the worst-case scenario” (Death.)

I’m finding myself in limbo. I’m arriving in various moments to the realization that in many ways my life has completely fallen apart in the eyes of nearly everyone around me. I feel their desperation to resurrect my wellness, to bright-side and silver-line us a path out of this big unknown. I feel their yearning to relieve us both of the discomfort of this. To make it better, to make it different, even just in our own minds.

I also feel the strain of finding myself to be “at least proof.”

There’s a small tension, an imperceptible twitch I feel in our connection when the latest “at least” slides off my reality.

“At least you’re still working.” Well….

“At least you’re stable…” Well….

“At least the symptoms aren’t too serious.” Through an eye patch, after my latest vision loss: Well….

This experience is also opening my eyes (hah!) to the way we use others as scorecards. We look around at the people we’re meant to love, connect, and belong to, and often use them as a measuring stick to tell how good/bad, up/down, on/off track we are. The very thing (our shared humanity + lived experience) that could be the antidote to the loneliness we feel is used to draw parallels where there aren’t any, and hold each other at arm’s length for the sake of preserving the illusion of comfort.

Why is it that we are unable to contextualize our own situations without being comparative? A projection of fear, a moment of alienation — these are high stakes. A friend recalled to me a story where after an MRI she said “at least it’s not a brain tumor” to a friend, who went on to find out he had a tumor himself weeks later. I understand the instinct to fix, to minimize, to reign in the horror of what we imagine in the unknown, lurking behind a divorce, a diagnosis, an addiction, a layoff. The reality is, we live it. Often many of these things at the same time, and the world never comes falling down. There’s no reset, no respawn, things sort of just, keep happening.

I’m seeing this with my health. Every time a new symptom arises, another tumble or bout of sightlessness, I’m left braced for the part where the world ends, but it never comes. I am learning to like this. There’s also a brutality to how real this is. How conspicuous I feel, and how I can feel the distance growing between me and others, simply because my reality won’t bend, and doesn’t offer an easy way to return to relative safety. I became the thing people dread for themselves. I am living what other people need to pretend cannot and will not ever happen. My mobility issues, my sight loss, my numbness, my question marks begin to make me less Jamila and more the personification of the unknown. Something to be looked at through the corner of your eye, and avoided at all costs lest you catch it yourself.

I feel taboo. I also feel disappointing. Endless conversations and well wishes around the theme of “figuring it out” and “taking it one step at a time” now leave me wondering how much time is too much. I’m left feeling the burden of remaining undiagnosed and unwell. I feel a level of guilt and shame that this story hasn’t reached a clear and composed resolution. Although I’m on a journey to a diagnosis, that is likely multiple sclerosis, a year and a half of increasingly more intense symptoms exhausts more than my body. I feel it exhausting my community. In some ways there’s a beauty to this - if the exhaustion wasn’t due to the energy it takes to ignore or massage the truth of something, I think it would feel different.

At times it feels more like a struggle of endurance. Being chronically ill sometimes means you don’t get better, there is no silver lining. You just live. I feel caught between convincing people that what’s happening to me isn’t “that bad” so as not to become draining, and being truthful about what is happening, how scared I am, and what I need so that I can feel seen.

Prolonged joy, pain, discomfort, or fear is hard to contextualize. It makes me think about how our heads snap to catch a car crash, a public spectacle, a fight or some other, but brutal novel event, and how our eyes begin to blur over the faces and bodies of people experiencing homelessness, children in Palestine, and situations of ongoing horror. I think one of the reasons humans seek novelty is because we know what to do moment to moment. We’re good at reacting, pattern detecting, feeling like we are able to do something, feeling capable. When things don’t change, we feel helpless.

I remember reading a study about task interest and competence. It got me thinking about how we work as humans; how I would watch my stepdad spend hours upon hours tinkering with his bike, or some wood project he was invested in. How he would iterate, adapt, and experiment until he got it right. When it came to relating to me, he was explosive, unmoving, and extreme. It made me realize that we react differently to things when we think we can solve them, when we feel a base level of competence in the task to complete it, even if it’s challenging. We need to believe the ideal outcome is possible AND we need to believe we’re capable of getting to it, with exactly the right amount of trial and error.

If things are too easy, they’re unrewarding. If things are too hard we hate them. I think confusion is just intrigue that carried on a bit too long. Frustration is just a challenge that overstayed its welcome. I think the reality is, when something drags on, and we stop feeling competent, we begin to resent the task, the person, or the situation, and we treat it accordingly. Something once novel, even fun becomes tedious, worthy of disdain, rejection, blame, and even violence. I feel myself walking this line as it comes to the reality of my health. I feel myself charting an unknowable parabolic curve of disclosure, reality, the support I need, and when I become problematized because the unknown, unfixable drags on a bit too long. I find myself sitting up late thinking about Go Fund Me’s and the concept of bad enough. When will it be bad enough that I need to rely on my community, and also how much am I supposed to share, explain, or expose along the way without risking my connections.

Which things come first? My stepping back from work and income loss? My changing, ebbing and escalating symptoms? Or the banalities of day-to-day life? I need to take my braids out. I had to stop talking to my mom. My phone screen broke. I feel like these could all also be symptoms of my one true and terminal condition: the condition of being Jamila - but I do feel myself reflecting on other people I’ve seen straddle this line, even if I wasn’t aware of it at the time. Family members needing help, but only able to ask for so much. Loved ones needing boundaries, but stepping away entirely out of fear of the reaction if they dared state their needs.

It’s for this I’m beginning to believe there is no rock bottom, there is no worst-case scenario because as humans we are blessed and cursed by the fact that there is no hell beyond our imagination. We can always imagine and invent some apocalyptic hell worse than the one we’re living because we HAVE to. Because remembering that it could be harder, worse, scarier, allows us to survive the place we are and remember that we’re not out just yet. I do believe we owe each other the dignity of leaving others out of this, of focusing on finding each other in our hardships.

I think we owe one another the very simple truth of our fear, and the strength to arrive at the pain of another. I say catastrophize! I say sit me down and spill your latest most dramatic rumination. Describe to me in detail the monsters under your bed, the demons in your closet. I simply ask that we do our best to make sure those demons resemble more the face of fear, than the face of our loved ones. I ask that we hold space for each other, for the impact of alienation, and remember that we don’t need to compare, contrast, measure our pain against others, or assign value to hardship — I think truly, there’s enough to terrify as it is.

Let’s stick together, shall we?

in kinship,

Jamila

P.s.

Something came up as I was editing this to send out that I wanted to share. you know those videos of groups of people going through haunted houses together? That’s what I mean. Something like this — if you want a little laugh.