Sunday, December 28, 2014

An Open Letter to My Late Husband's Oncologist

Dear Dr. A- :

Of course you know by now that Mr. Simply died November 2 -- you signed the death certificate. You had been his doctor for about 18 months by that point, and I have no complaints whatsoever about his medical care. Neither did he. I am convinced that he got as good a care at N--- Center as he could have gotten anywhere else in the country. We discussed this more than once, particularly when his treatments failed and we briefly considered getting a consultation elsewhere, so I know that he agreed. And he liked you personally, trusted you, was grateful to you for everything you did, not only for him, but for his friend Donnie as well.

But we do need to talk about your compliance -- or lack of it -- with the Americans With Disabilities Act (ADA). Every time I brought him up there, and over an 18-month period that adds up to a lot of visits, I had to struggle to overcome obstacles from the minute I rolled off the elevator.

Parking always seemed adequate, wheelchair lanes were plentiful and wide, and the curb cuts were easy to locate and use. But once I rolled off the elevator into your suite, everything changed. In the first place, there's that sofa directly across from the doors, and the unused wheelchairs parked there, and the unnecessary silk trees in giant pots. Add in any foot traffic at all, and of course there's always bound to be some, and there was no longer enough room for me to exit the elevator on my scooter!

The reception counters are too high for someone in a wheelchair to use comfortably, as are the computerized sign-in kiosks. There are rules, with the force of law, I might add, about this.

The in-house pharmacy around the corner is nearly impossible for a wheelchair user to access, as it is off on a narrow, dead-end corridor which is partially blocked, one again, by waiting chairs.

Speaking of chairs, there are way too many chairs in the waiting room: The rows are too long, and too close together to meet ADA rules. There are rules about how wide travel lanes need to be between rows: You probably need to remove at least one full pair of back-to-back rows in order to make the spaces in between wide enough. Keep in mind that those rows look great when you first arrive in the morning to open up. But when you put people in them, of course their legs and feet stick out, and the lanes become too narrow for a wheel-chair user to navigate without inconveniencing and annoying everyone. And let me tell you, it is no fun, no fun at all, to get the side-eye from a dozen people, coming and going, every single time I had to visit your practice.

You also have rows that are too long. Not only is there nowhere for me to sit in my scooter except out in the middle of the room, but the rows run too close to the walls at each end, and I can't get around them if I need to get to the water fountain in the back corner. You probably need to remove at least one chair from each end of each row, not only to allow travel around the ends, but also to allow us to sit in a row like every one else does. You could probably easily afford to remove chairs: I was there on some pretty busy days, but I never saw them all filled.

That's a key phrase, by the way, "like everyone else". The ADA is about civil rights, about being able to have the same access to businesses and facilities that every other citizen has. It is federal law. But I digress.

Once we left the waiting room, there was the issue of blocked corridors. The ADA specifies that hallways need to be a certain minimum width, and that they can't be cluttered with furniture and storage items. Yours are, beginning with the lab waiting chairs in that first hallway. Once people sit in them, their legs and feet and purses close off enough of the corridor so that it no longer meets federal standards. It is virtually impossible to navigate without everyone having to shift as I come by in order to give me room to pass. And again with the side-eyes, you know?

Once there, there was nowhere for me to park while I waited for Mr. Simply to get his labs drawn except smack in the middle of the hallway, rendering it impassable for staff and other patients. If you are going to have rows of chairs out there, I would suggest at least having the rows short enough that a wheelchair user could back his chair in alongside, or that someone in a scooter like mine could at least pull out of traffic onto the shoulder, as it were.

The back hallways are even worse, given that they are not only narrower but also cluttered with computer carts and such. The examining rooms are so small that there is barely room for me to back my scooter in so that I could participate in Mr. Simply's consultations with you. And then you acted irritated that I was in your way whenever you had to reach past me for a blood pressure cuff or something out of one of the cabinets over the sink. At least one of the rooms was so small that even backing in was not an option. Whenever we met you in there, I had to leave the scooter in the hallway -- adding to the illegal clutter.

Then there's the treatment rooms. I understand the need for every possible square foot of this area to be making money for you, but as many people as I observed coming to chemo unaccompanied, I think you could remove some of those guest chairs so that I could have backed my scooter in next to Mr. Simply's treatment chair. Instead, I sometimes had to park my scooter in a storage area (or yet another hallway) and leave it there for an hour or two while he got his infusion. This was an option, however troublesome, for me but is obviously not for a patient or family member with para- or quadriplegia. Once I was instructed to leave it in the walkway at the exit door to the waiting area, blocking that path for everyone else.

It is not beyond the realm of possibility that I myself might one day need your services. But what all of this tells me is that you and your colleagues have not given any thought or care at all to making me welcome there or enabling me to use your services with any degree of comfort. Possibly you do not even care about my needs: I certainly could interpret my experiences there over the last year and a half in just that light.

The thought of having to overcome all those obstacles on a several-times-weekly basis while sick, weak, in pain, and dying is overwhelming even to think about. I personally would be grateful if you would avail yourself of one of the consultants who specialize in bringing practices into compliance with the ADA, and getting your facility cleaned up so that people like me can use it. We make up 20% of the population -- 32% in the over-65 age bracket, which I bet is where you get most of your patients -- and you would more than make your money back if you invested in these small improvements.

I can find another practice if I have to, but I would not want to. So how about it?


Thursday, July 31, 2014

These are the good old days

. . .  tomorrow we might not be together
I'm no prophet, I don't know nature's way
So I'll try to see into your eyes right now
And stay right here, 'cause these are the good old days. --Carly Simon

When I was young, what I heard was a song about anticipation. Specifically, I heard that anticipating good things was a pleasant experience. I completely missed the message. Completely.

Fast-forward 43 years.

I've been engaging in a fair amount of bitching lately about the rigors of maintaining a household while trying to work and care for two animals and a sick Mr. Simply, all while my own health steadily declines. It started one night when I crashed into my reading chair after dinner and forgot to clean up the kitchen until it was already late, I was tired, and. . .


Over the last couple of days I've been paying careful attention to what, each day, threatens to overwhelm me. The complicated pet-feeding ritual each morning, which includes preparing special drinking-water mixes for each. The dishes, of course. The trash. The laundry.

And then last night it hit me: These are the good old days! I wanted a husband, a house, a dog, a bird to care for. There are aspects of each experience that I did not exactly anticipate but on the whole, I like having a house, Diana, the bird. I like being married. I like what I do for a living, and I like the people I do it for. These are the good old days, when I have a house, a bird, a dog, and a husband to take care of, when I have a job to retire from, when my body is in better shape than it's ever likely to be again. 

So I think I'll stay right here.

Back in '71, I thought that meant that if you were having a pleasant experience, you tried to hold on to it. I understand now that Simon meant something entirely different by this -- now is all we have, and it is good. I might as well stay in it. 


Saturday, July 19, 2014

Je Suis Prest

Like any good scout, I'm prepared.

I learned the hard way.

Today, we needed to call the after-hours service about a disturbing symptom Mr. Simply was having (on a Saturday, of course -- when else?) and my cell phone would not dial out. Would. Not. I had zero bars, and for whatever reason, Wi-Fi calling wasn't working either. I had 4G -- too bad I can't communicate with Mr. Simply's oncologist via Facebook.

No problem, right? I'll just use the house phone! So I did, and left my message and our number, and waited. And waited. And waited.

It seems we have Call Blocking. Who knew?

So I turned it off, and called back and left another message. And it was at that point that I believe the battery must have died (because I left the phone laying out on the coffee table last night). We only have the one wireless. So of course we didn't hear back. I plugged it in, then couldn't leave the room because as we all know, I can't run to the phone if it rings. But it was too late.

In the meantime, the symptom went away. We decided to have dinner. And I re-booted my cell phone. It took two tries, but it does work now.

Last time I was at the hospital, Tillie (my scooter) started stopping randomly -- usually in the middle of electronically-operated doors. And so I had meant to break her down and see if there was a loose connection somewhere, which is what happened once before. Except I was frigging exhausted and never got around to doing it. So here we are, on a rainy Saturday afternoon, with phones that won't work and  a sick man and a scooter I can't trust. . . Can't you just see the bitch quitting on me while I'm crossing the street in front of the ER??

So out I go, unload her from the van, tear her down, fortunately it's not raining right this two seconds, find the loose connection (exactly the same one as last time), repair it (I hope), put her back together, load her back in the van. Hopefully now if we do wind up going to the hospital tonight, she'll run.

But that's not all!

I really like to have what I call Pajama Days, in which I do not get dressed. At all. All day. And this has been such a difficult week what with Mr. Simply being in the hospital and all, that I had planned a Pajama Weekend. My pjs, all freshly washed and fluffy and soft, were laid out on the bed before I turned out the lights last night, and my plan was to put them on this morning and not take them off again until I had to go back to work on Monday.


Here's the new rule: Get showered and get dressed. 'Cause you never know.


Saturday, May 31, 2014

The Little Bastard

As in, Mr. Simply was diagnosed last year with lung cancer. As in, he lost the lower right lobe of his lung in an attempt to excise it all, followed that up with a couple of months of chemo, and we hoped that would be the last of The Little Bastard.

Not so quick, kids.

It's back: There are now Little Bastards on his bones, and a Little Bastard on his liver.


Sunday, April 20, 2014

Dear Finger-pointing Neighbor:

I saw you. I was sitting in my favorite chair in my favorite window, reading Evernote for Dummies, if you must know, and concentrating on recovering from a cold so I could go back to work Monday. You see, I don't get paid if I don't work, and I've already had to cancel half a day for this bug.

You were walking past with your wife and your stick and your dog, and you pointed. And you said something to her -- I assume about the condition our yard is in. I mean, you could have been saying something nice about our bird feeders and nest boxes and stuff, but. As Mr. Simply put it so bluntly, when he saw you go by and point, "It's in the worst condition of any yard in the neighborhood." So what are the odds?

What you don't know is that Mr. Simply has, in the last six years, been through radiation, hormone therapy, surgery, and chemo for two different cancers. Because of his illness, he was forced out of his company, made to retire ten years early on half pay. We're a lot better off than many people who were losing their jobs and their homes in the recession that was coming on about that time, but still. He lost half his income and all of his get-up-and-go.

As for me, I have a life-long disability that has been getting steadily worse. Unlike Mr. Simply, I'm still working, but my little business went belly-up the year after he "retired", and since then I've had to cut back on my hours a little more every year so that I'm making now probably about half what I was then. 

We can't walk our dog together any more. Nor can we get out and clean up the yard like we'd like to, and we can't afford to hire it done either. Our neighbor mows the part of our yard he can get to when he mows his, and I can't tell you how mortified we are every time we see him drive over here on his little John Deere.

There are plenty of other streets you can walk down if it offends you so much to pass our place. So take your judgmental, bourgeois, ableist self on down the block -- unless, of course, you're thinking of offering to help us out a little here. In which case, sit down. Pull a weed. I'll make iced tea.