Over the last three weeks, my wrist has started to weaken and supply me with a lovely dose of pain at any kind of pressure. My ankle decided to follow suit with a pinching pain just for flexing my foot. I don't know what's causing these issues, but as someone with a chronic illness, it's easy to get trapped in anxiety over whether this is another "new normal," or if it means something worse is coming.
Not a medical professional here, so none of this is advice. However, I have been filling my head with stories and research and theories over the last year or so to try and better understand the human condition and how to find meaning and purpose despite disability.
I uncovered something yesterday that I think can be helpful in sorting through all of the painful and confusing experiences that we all go through at one time or another. I always get nervous speaking about ability and disability, because I know that I am not representative of everyone in the disabled community, so please remember that these are my own thoughts drawn out of my own situation. Don't weaponize my story (or anyone else's) to try and manipulate someone into "cheering up" or "pushing through" if they're not ready.
Nervous disclaimers aside, this was my discovery.
Failed Hope
My relationship with the concept of "hope" has been fraught. Most of my childhood, I was surrounded by messages and platitudes about hope that never seemed to be honest.
Crushing depression and thoughts of suicide pervaded my college experience. It was so intense, I leaned on religious (specifically Christian) ideas about hope, expecting to find some kind of lasting solace or peace. The depression quieted for a while, but it never fully withdrew except by denial. Unfortunately, my craving for hope turned into fanaticism. Perhaps I had been doing it wrong, so the only way to get that hope was an increase in intensity: a scrupulosity that would make Dr. Jekyll proud (or tremble?).
My carefully constructed view of humanity, myself, and the world at large was smashed to pieces that awful weekend of Cinco de Mayo when I heard the words, "Multiple Sclerosis."
I can't speak for those with disabilities from birth—they should be allowed to express their experiences, and hopefully we'll listen when they do. However, I think a lot of initially able-bodied people have to confront disability at some point. Whether because of age or disease or accident, ability is not guaranteed, but it is expected, making the loss of ability very difficult to grapple with—certainly it was for me.
The systems that we are a part of (social, labor, etc.) tend to lean ableist. Meaning they prioritize and may even prefer able-bodies over disabled-bodies or bodies with disabilities. The loss of ability could mean the loss of a career, of community, of purpose.
We don't have tools, generally speaking, to handle that kind of loss, especially for the larger-scope disabilities (chronic/permanent). Often, it feels like society doesn't see people as people, but as either productive or burdensome. Something that either adds or subtracts.
Like Erik Davis writes in TechGnosis (pg. 157):
"...capitalism has a long and exuberant history of embracing whatever technologies and institutional frameworks, allow it to fit human beings into vast and efficient, megamachines of production and consumption."
If you aren't productive, what other option has been provided for us to see our value?
The Thing with Feathers
The connection came from deep below my thoughts. It rose to break through the surface as though dislodged from the watery abyss.
"Hope is creativity." Or maybe better understood as, "hope comes through creativity."
While I tend to bristle at the word, "hope," knowing that it is fleeting, and often wrong—not accounting for reality, and therefore sometimes yet another pain on top of pain—this time I paused to watch where this tiny connection in my mind would go as it floated on my thoughts.
I know from my work as a developer and even from my designer-days that there are always many solutions to a problem. It's not a matter of finding the right solution, but the better solution. Maybe hope could be found as a by-product of that creative problem-solving process?
I had been imagining / remembering sitting on the floor, trying to push myself up to my feet, but my wrist was giving out in weakness and pain. As I watched this replica of myself in my imagination struggle to do anything, I started to see ants with a leg missing. I saw the three-legged dog owned by one of the Humanities professors at college, hopping down the hall. I saw nature—usually the cruel creator and destroyer—reveal the possibilities through adaptation.
It's still not comforting in the way I might have wanted, but when the will to live is still intact, creatures of all sizes and species have demonstrated that they can go on. They use creativity to figure out new ways to continue on. It's not pretty, it's not the same as before, it's not easy, it's not without pain. But it is a continuation.
Maybe, like Emily Dickinson wrote,
“Hope” is the thing with feathers -
That perches in the soul -
And sings the tune without the words -
And never stops - at all -
...hope can exist—persist—as I undertake to partner in creation. Nature doesn't stop, it iterates. It tries and tries, and there is no end state. Maybe my hope really does have feathers, because it is evolving to stay afloat, whether in the waters of despair or in the open sky of possibility.
Cyborg
The more I learn about humanity and systems, the more I can see that we do have value. MS taught me that the value I had been ascribing was mistaken.
It is not in our abilities, productivity, or output that we are found valuable.
It really is in our existence.
That we are is already a miracle. That we can collaborate and support each other is yet another.
Whether in stomaching the loss of ability or freedom or community, there is hope to be found. But it isn't trite or dismissive of the reality that you face.
And sweetest - in the Gale - is heard -
And sore must be the storm -
That could abash the little Bird
That kept so many warm -I’ve heard it in the chillest land -
And on the strangest Sea -
Yet - never - in Extremity,
It asked a crumb - of me.