2nd place winner in the Able in this Diverse Universe contest!

Judging noteBeauty in Mind is a fantastically fragmentary, speculative, and gorgeous essay that meditates on how illness both alters the human experience and is part of it. Powerful, haunting passages reveal how illness creeps into every corner of the psyche.

 

Beauty in Mind

“I had to learn to reconstruct my life.”

– Jacqueline du Pre

 

Notes:

Zebrafish. Transparent of body when young. Ideal for the study of cellular goings and comings. Chemical light and electrical transmissions. Stimulus, response, and the principles that link: if you could see the wires you could potentially know how neurons communicate and which fibers communicated with which.

Engagement. Attention fixed in stone; looking for a chip, a chink, a series of frays.

 

RE: Hope levels

The Stem Cell Institute is located in Panama and is not governed by the type of regulatory oversight we are rigorously conditioned to enjoy via the US Food and Drug Administration here in the States.

You want statistics regarding the autoimmune industry? Let me whet you: Approximately $100 billion in revenues annually.

(http://www.aarda.org/autoimmune-information/autoimmune-statistics/)

Staggering numbers for what is, at its core, a viscous and bloody mutiny.

Recipe:

Take pills. Supplement that is. Just like candy.

Fatigue:

When I misfire on the daily crossword is it me really not knowing a 7-letter word for mental acuity or me instead skating recklessly across my ether, my vapor log and files half or long forgotten?

I tire at the mall. So many people haphazardly doing whatever on a Saturday afternoon and I just need to get from the car to the café to the store and back to the car again and people want my path, my drawn breath, my next decision. Forgive them – they are just people and I am not Visible. Multitude of decisions wears me out. Don’t even try it bitch man-cow…that’s my parking spot.

While I Glaunder, Smeak and Fleary:

It’s taxing. The disease is gonna do whatever the hell it wants. I take notes. Read up on what is being done with mice. Look for flaws.

Option:

Stem cells.

“The body’s immune system is unable to recognize umbilical cord-derived mesenchymal stem cells as foreign and therefore they are not rejected.”

That from the Stem Cell Institute.

Vegetable:

I worry about my back. If I have to be chair bound eventually fine. Just don’t make it painful. Is not knowing what is to come the pinnacle of pain?

Mom told me that when she was hours from delivering me I was oriented the wrong way and pressuring her sciatic nerve, which in turn caused spasticity in her legs.

I am not pessimistic. I have even thought about taking helminth. Parasitic worms. Whipworms. Sounds like the option Poe would have chosen…save that mind numbing wind…and the sepulchre by the sea…

Option:

I was invited to a healthcare symposium by mistake. A gathering of folks looking to the future of stem cell therapies. Health and the angles available. ROI. Divisions of joy. Yeah. Approximately 60-65% of the event devoted to marketing opportunities and very little toward standing at medicine’s vanguard. Toward ushering in an age of cure and abatement.

Oligodendrocytes:

Apoptosis? Programmed cell death? Sounds horrid. Apparently it is an internal, civil arrangement. Bodily processes. Regardless, there is damage. Fragments and particulate matter moved downstream and away from the centers of activity. Seen again only in the CSF as relics of what was once personal antiquity.

Different OPC (Oligodendrocyte Precursor Cells) lines compete with each other. Brutal and brutish competition for space and resources. Necessity, like a breakup song, consoling the fractured remnants out of meaningful relationship with the body. Apoptosis.

Kinetic Possibility Potential:

Investigations taking place in the gut and all things of the gut. The Gut Biome. 80% of the immune system resides in the gut. That’s crazy right there.

If we are illuminating neural pathways throughout the juvenile Zebrafish as it’s environmental stimuli are manipulated, then in theory we are able to see where these so called communication lapses occur and perhaps even arrive at probable cause. We know response types and we know where supposedly.

Oligodendrocytes:

Your life’s work – the myelin – taken before you and ravaged. The power to self-renew, to differentiate, obliterated.

Supremely important yet insanely vulnerable. Oligodendrocytes are betrayed, damaged and destroyed from within. The very system oligodendrocytes devoted their lives to building and running like elegant and fluid clockwork betrays them.

Don’t get me started on the hapless NPCs (Neural Precursor Cells)…unable to differentiate. Sniff.

Half Truths / Sour Puss:

On the forums though I inevitably get caught up in a dialogue with someone that says you have to be on a DMT. Just have to. All this said in justifiably bitter frustration. Swinging wildly and in the faces of those individuals who live as exceptions to the DMD maxim. What did they do besides cross fingers and hope for the best? Truly – moderating one’s MS is like sucky performance art for life’s sake.

Notes:

It’s been happening a lot lately. Whatever I’m doing, wherever I am, I have this queer tendency to look up at the clock when it is 11:11. AM or PM. Doesn’t matter if I haven’t looked at the clock for hours. Or minutes. Head pops up and it is 11:11. 11:11 has nothing to do with my disease. Nobody I know passed at 11:11. Maybe there is a symbolism attached to it and maybe that symbolic vicissitude is somehow a history yet written…like a cure at the 11th hour…which seems more applicable to something like Cirrhosis or complete renal failure. MS is, more often than not, a slow ride. 11 cents could easily take you on a yearlong gondola odyssey of glial communities, grey and white neighborhoods. One could campaign for cessation. Post flyers. Pose with wee dendrites and war weary axonal neuropathic vets. Restore belief in this system.

Then again it could have just been the Rufus song? I like that song. Like a rudimentary dualism of body function loss and pain. Surely there is a word for that right? Something more artsy, more sexy than neuropathy…

Magnitude:

I cannot sit still. Very well or for horribly long periods of time. I will brave lines and crowds for specks and flashes of they and those I am now, have, and will forever be indebted to for the grace of their artistry. Music and art. Poetry. Blind adoration. Wistful ambition. This is just that struggle repackaged with appointments, shifting routines, and a reconstruction of ideas. Clarity. Wait – was that the crossword word?

Janus was the Roman god of beginnings and transitions. Passageways. Diagnosis belongs to the unalterable past.

How is having a disease different from what is commonly referred to as “the human experience?” And experience, as a polymorph unto itself, knows not of fatigue.

___

Sean J Mahoney lives with his wife, her parents, two Uglydolls, and three dogs in Santa Ana, California. He works in geophysics. Out-boozed by Franciscan monks in Ireland. Swimming with Whale Sharks in Mexico. Sean believes that punk rock miraculously survives, that Judas was a way better singer than Jesus, and that diatomaceous earth is a not well known enough gardening marvel.