A lot of the pre-visit prep work is simple, but deceptively so. I.e., when we last visited her doctors in November they gave us a forest-crippling amount of paperwork that we had to keep for the next visit.1 On the surface it doesn’t seem tricky to keep a stack of paperwork for four months, right? But you’ve not been fully apprised of two opposing factors of our co-habitative way of life: Ashley tends to collect piles of things over time2 and I have a low tolerance for piles and will occasionally lose a bit of control and said loss of control will sometimes mean that I throw things away that really weren’t meant to be thrown away.
And so if you show up to the labs without the appropriate paperwork because maybe you tossed them away in an early AM fit of pique, they’ll still do the tests but will scowl at you for a while like librarians with hemorrhoids while they dig up the appropriate authorizations from some database.3
Another prep-thing is simply money and food. Gas in particular is expensive4 and this is mostly why we spent the money on getting a decent car. Not only is it reliable but it sucks way less gas than her old car. Food is a little easier to deal with. Since we’re usually staying over at least one night – and sometimes two – we usually buy food at the grocery store here and take it along.5 But there are two places we make a point to eat at: The UPMC cafeteria6 and a diner called Ritter’s. I’ve been a fan of greasy spoons my entire life and let me just say here and now that Ritter’s takes the cake, diner-wise.
One final prep-type thing is Family House, which provides our lodging during our stay and, thankfully, is covered by Ashley’s Medicare. As some of you know, however, being on Medicare seems to be all about making sure you’ve covered the bases. Because if you’ve left one teensy corner of one teensy base open, Medicare will exploit it and make you feel not unlike the bowling pin Daniel Day-Lewis used to bludgeon that kid to death at the end of There Will Be Blood.7
We have to follow a certain routine for authorization at Family House, and especially is Medicare is footing the bill. This isn’t terrible, but mostly because it’s worth dealing with in order to get decent lodging at no cost (to us).
So. Family House.
From the guest handbook:
In 1983, Family House opened its doors to patients and their families providing them with comfortable, affordable surroundings while they underwent specialized hospital treatment at UPMC.
Family House, a non-profit organization, operated by a voluntary Board of Directors, provides a special home away from home for patients and/or families who must travel to Pittsburgh for treatment of serious or life-threatening illnesses.
So basically everyone here is either dealing with or dealing with somebody dealing with some type of ‘serious or life-threatening illness.’ What this can mean is: far-off glances; glazed eyes; traces of tears; strained not-quite-vacant expressions. All from various guests walking the night-time hallways of this place.
What it can also mean is: community; giving; understanding; compassion. Every single person who is staying at a Family House can relate in some aspect or another to what every other person here is going through. More than relate, everyone can empathize with one another.
The only place on earth I know of in which this type of shared-experience empathy exists is halfway houses.
Words like catheter and phlebitis are bandied about like you and I might talk about music. You’d be hard-pressed to throw a stone into the kitchen and not hit someone on serious, high-cost, life-sustaining medication. Or someone who knows someone.
Ashley met a friend years ago because they each stayed at Family House. She’d stayed there a few months before Jamie came in for her transplant and the other people in the Family House told her about Ashley.8 When Ash returned for a check-up, people made sure they met. And they’re still friends, sharing an experience they share because of genetics, modern medicine, and Family House.
Some of the Family Houses look like halfway houses. There are large rooms with large communal-type tables. There are kitchens the size of cooking-show kitchens. There is coffee brewed 24/7/365. There are industrial-grade dishwashers and stoves. There are siderooms with collections of old and obviously-donated and -thumbed-through books. There are large TVs in front of large sofas. Usually occupied by people with large, vacuous eyes. There are overstocked pantries and freezers. There are board games and computer closets. There are donation plaques everywhere.
Ashley and I often don’t quite fit in. We carry ourselves in a way that clearly marks us as non-immediately-serious-concern-bearing people. I think people often suspect that we’ll only be here a day or to. I try not to think that they may be jealous.
But they are congenial. They are polite and they will talk to us about their problems with zero provocation. And we will listen because that’s what you do here.
So, that’s today. Tomorrow I’ll talk about the actual labs and appointments. I plan to updates the post throughout the day9 so stop back often.
- Most of this is authorizations for various types of lab work.
- As in like, things get collected into piles.
- One of the X-ray ladies in particular seems severely hemorrhoidal and also possibly menstrual every time we’re there.
- And nowadays we’ve gone beyond arm-and-leg expensive to –and-torso-and-gonads expensive.
- Grocery stores in Pittsburgh being pricier than those here. Though we do usually stop in Pitt’s store’s snacks aisle for a certain brand of sour-cream-and-onion potato chip that is unavailable in Ohio for some unknowable and likely unsupported purpose of marketing and/or distribution.
- UPMC being the University of Pittsburgh Medical Center, a collection of hospitals with individually strange names and über-labyrinthine hallways and a walkway over a street that when you’re on the eastish side of the walkway you’re on the 7th floor and once you reach the westish side – having changed one’s altitude not one iota – you’re now on the 3rd floor, the whole thing giving me a not-quite-but-still-almost vertigo feeling every time. But so anyway what I meant to say is that the hospital cafeteria is truly perfuse with tasty comestible options and view for a pleasant prandial repast.
- Sorry. Spoiled my own spoiler alert by being a touch late, footnote-wise. Also, feeling like the bowling pin would cast Medicare at Day-Lewis and you yourself as the bludgeoned-to-shit kid because Medicare makes you feel as though you’ve sown the seeds of your own destruction by not following their rules.
- Many people in Family House are long-haul-type stayers, for weeks and months at a time, until someone gets better or…well, doesn’t. The first time I was at one I saw a family basically moving in. The father was carrying an acoustic guitar and somehow to me that suggested long-haul, serious-concern-type concern in a way that nothing else had.
- Before Twitter we blogger had a technique called ‘live-blogging.’ This will be that.