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Querido diario:

Just like death, disease is taboo in much of the Western hemisphere. We are marginally more comfortable navigating disability — or, rather, visible disability. A young person on a wheelchair is easier to stomach, (poor) social customs dictating you must avoid any interaction where possible. We don’t know how to talk to each other. So rarely are we exposed to disability that, in these cases, we see the wheelchair and forget in seats a person.

However badly understood disability is, disease is even worse so. The chronically in pain and bound to bed have nothing to show for their plight. You must take their word for it, otherwise, their pain isn’t just invisible: it isn’t real.

At times I’ve envied the wheelchair user, the one paralyzed waist-down who has learned to move independently and purposefully. I’ve envied her from the discomfort of my bed — to which I’d been bound three months straight. I’ve envied the armless who has developed a way to navigate the world, work, and play. I’ve envied her from the darkness of my pain, which ripples through my body, nestling in my joints and brain. In truth, I’ve envied my past self, the one who didn’t know my current state.

In my illness, I’ve developed a compassion and empathy for the unhoused I couldn’t have come to know otherwise. Were it not for the freely given and merciful care of my family (and now new husband), I too would have found myself on the streets or, frankly, perhaps even dead. All four of my limbs visibly intact, who would think me incapable of working, sustaining myself, or making my own meals? There are things the eye can’t see: one of those are invisible disabilities; another is the path that led the unhoused to the street.

There is no blueprint for living with a disease; between flare ups and remission you build your own. Inevitably, it will be wrong, so you revisit it time and time again, becoming varying levels of discouraged and optimistic in what feels like a rollercoaster that knows no end. I can only speak of my own experiences, but I’ll rebuild dreams and plans for a future where remission is all that’s left of this menacing shadow, only to be hit by another wave of disabling fatigue and pain.

And yet, in this life I continue to find love and purpose, comfort and friends, and hope in a horizon that meets me day after day. There is something indomitable about the human spirit, a fire that burns even in the absence of tinder. So, after every negative feeling felt and journal entry that comes to an end, inevitably I find a sun mending my heart with the warmth of its rays.

Photo by Quin Stevenson on Unsplash