Thursday, August 14, 2014

But only in their dreams can men be truly free.

There have been a lot of articles written about Robin Williams, about mental health and suicide and depression - enough articles that I wasn’t planning on addressing it because so many people have eloquently and succinctly touched the issues that needed to be addressed.  

There have not been a lot of articles about his Parkinson’s Disease.

There is something incredibly lonely about staring down the chasm of a degenerative disease diagnosis. No one can prepare you for what it feels like when your own body mutinies. No one can describe the feelings of helplessness and humiliation as your independence is slowly eaten away by each unpreventable injury or fallback. Having to ask for help for basic tasks, needing someone to carry you up the stairs just to get inside. The exhaustion of everyday chores as they become Sisyphean. The heartache that comes from having to abandon doing things you love - like running - because you are completely, utterly, physically unable.

The slow decline of degeneration takes a physical toll on you. You lay in bed at night, exhausted but unable to sleep, the pain like a tic at the edges of your fuzzy thoughts. You’re powerless, trapped inside the cage of your own self. Drugs take the edge off the blade, but they don’t change the fact that you’re still being stabbed. You walk the fine line between sobriety and medication, your own razor-sharp edges dulled by pain or opioids or both.  The days go by and it’s a ticking countdown further into the degeneration, one second at a time. You can treat palliatively, try to slow the disease into submission, but there is no treatment. 

That same slow decline takes a toll on you mentally. Your future is painted by the expectations of reality under the diagnosis. You make checkmarks next to boxes of new symptoms, each year pitching and yawing deeper in. You try to prepare for the worst, because the worst is realistically the best guess. You miss out on milestones and experiences. Your life is painted in assistive devices and doctor’s appointments. You’re still always other, set apart, sick, abnormal. People relate the best they can within the scope of their own paradigm, but they still don’t want to talk about it, because it scares them. Or suspect you’re thinking yourself into the next symptom, the next assistive device. They see you functioning because no one else is going to pay your bills, see your painted smile and read it as legitimate because no one wants the burden of your sadness all the time.

You take up meditation, or religion, or whatever hobbies make you feel better. You make lists of the good things, the positives. You appreciate your friends and family, try to enjoy what you can when you can. Love your dogs or your kids. You create, somehow, try to turn the overwhelming negative into acceptance, into light.

But it doesn’t change the degeneration, the debilitating fragility and frazzled exhaustion.

Do I wish suicide hadn’t been where Robin Williams ended up this week?

Of course.

That doesn’t change the fact that looking at the diagnosis of a degenerative disease is like staring down the barrel of a loaded gun. Your finger’s on the trigger but you don’t get to choose when you finally fire. Your own inevitability is completely and utterly out of your control.

Do I understand why he took the shot, quite literally, into his own hands?

I think, perhaps, that I do.

Thursday, July 31, 2014
stymied by what used to be simple. #ehlersdanlos #eds #chronicpain #vsco #vscocam

stymied by what used to be simple. #ehlersdanlos #eds #chronicpain #vsco #vscocam

Friday, July 18, 2014

Live Más

   The first call comes early in the morning, when we’re all still bleary-eyed and downing our first cups of coffee, but the family requests that we not come to the house until the early afternoon. They’re waiting for a sister who’s coming from Mexico, and she wants to see her mom at home first. I set an alarm on my phone for 1:30 PM so we can be on the road and at the house by 2.

   It’s one of those days, one that passes so slowly that Ollie and I are already in the van by the time the alarm starts chirping at me, suit jackets on. It takes eleven minutes to cross town instead of the usual nine because we catch all the red lights possible; with him driving, the empty gurney lurches forward into the small of my back with the lightest tap on the brakes.

  We back into the driveway significantly earlier than our expected arrival and twiddle our thumbs for eight more minutes before stowing our phones and deciding to head in.

   I rap on the door four times, Oliver standing just behind me. There’s a bustle of movement, and the door opens to reveal a smattering of gathered family members.

   “Hi there. I’m Heather Ratcliff, from the mortuary, and this is Oliver.” Several people shake my hands and introduce themselves in a flurry of names I won’t remember. One brother takes point and steps back, inviting us in.

   “We’re just finishing praying the rosary with Mom, so we’re gonna be a few more minutes. If you want, you can have a seat in here instead of waiting in the car?” We’re ushered into a living room, sitting down beside an unlit fireplace and a life-size photograph of Pope Francis. Pope Benedict peers down from above a fish tank across the room, algae swaying gently as the goldfish inside swim slow circles.

  There are kids in the room, all under the age of 16. Some smile and nod as we sit, tucking in our elbows and taking up the least amount of space possible. The older generations retreat to the bedroom, and “Hail Mary” filters back to us in murmured Spanish. The generational divide between traditionalism is readily apparent as the kids mutter questions about what the grown-ups are doing in the back.

  “No, I have no idea what they’re saying. This is taking forever.” An androgynous young woman slouches in a wing-backed chair beside us, Doc Martens crossed at the ankle and a loose shock of faded blue hair tumbling over the shaved half of her head. “I’m starving, though.” Everyone nods his or her assent. “I would kill for some Taco Bell,” she continues, utterly sincere.

   Ollie and I have never tried so desperately to not disrupt natural conversation as it delves into talks of tacos with death just a room away. Our laughter in the car, though, is long and joyful. 

Tuesday, July 15, 2014

proprioception, 11:55 PM

the cold envelopes my foot

running shatter-rampant up my heel and

twining around my calf, bloodied bandages

if i stay still

limbs splayed in the gentle, lapping quiet

of dilaudid dulling 

for a moment i feel nothing:

no stiff metal, no straightened bone

no aching freeze down past my nerve endings;