Don't You Worry 'Bout a Thing

Was looking for music to put on a soundtrack of our lives to play at Mr. Simply's memorial and found this:

"Don't you worry 'bout a thing
Don't you worry 'bout a thing, pretty mama
'Cause I'll be standing in the wings
When you check it out"

-- Don't You Worry 'Bout a Thing
 Stevie Wonder (1973)

It came out the year we started dating. Not long after I added it to my playlist, I got a package and went out to get it. My leg was bothering me, sore and weak, my arms were bothering me, and I felt a moment of real fear. What if?

We are so vulnerable when we lose a mate, when our life partner is no longer there in the wings to step up, pitch in, catch us when we fall. 

Mr. Simply was quite the caretaker, and when we met set right out trying to do things for me and worrying about me even in areas in which I had been functioning quite competently, thank you very much. He wanted to find me a rollbar for Orville (my 1973 MGB). He worried about how I'd get to work if there was ice on the sidewalks and parking lots, and on the stairs at my apartment building. And over the years, I became more and more dependent, forgetting quite literally how to do some things, just getting out of the habit of others. And then of course there were the myriad ways in which even normal healthy couples do for each other.

He didn't get my graduate degrees for me, but he was "in the wings" both times, supporting me (literally and figuratively) every step of the way. He was literally in the wings when I defended, slipping in and out to check on Daisy's progress in emergency surgery and signaling me with a thumbs up from the back of the room each time he returned from talking to the vet.

Over the last few years, he was doing less and less, and I was doing more.  And what we couldn't do just didn't get done. The yard hasn't been raked in so long, for example, that the leaves and pine needles are becoming soil and changing the shape of the yard and the way rainwater flows around the house -- or doesn't any more, to be perfectly frank.

But still. Even after he got cancer the first time, he managed to move my office for me not once, but three times. Three times! Of course, the last time I was down to some boxes of files, but still. He did all the grocery shopping, right up until he went into chemo last year and was too sick to, because my legs would no longer support me that far or that long.

Two years ago, he took money out of his IRA to buy me a van to carry my scooter, and a lift to get it in and out of said van. There were the new windows on the house that he paid for, also out of his retirement fund, last summer. The old ones were so old (and so was I, for that matter) and sticky that I could no longer manage them. And he was always there for emotional support or just to bounce things off of.

Last spring, he came to the hospital, even as he was dying, to be with me when I needed him. "Do you want me to come down?" he asked on the phone. I had not even wanted him to know until after I got home that evening and it was just a funny story, but then they decided to admit me for observation overnight and I had to tell him. "Yes," I said. And he came, even though he was loaded up on pain pills and had to get a neighbor to drive him. He came when I needed him.

I'll never have that again.

Simply,

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?

Simply,

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. . .

This.

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. 

Simply,

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.

Simply,

Maybe I'm Being a Little Oversensitive, Here

Image by Paolo Margari via Flickrbut I am getting tired--tired, I tell you--of showing up for social events and finding out that I can't get there from here.

Last night, the party was at a downtown bar with no handicap parking. None. Zip. Zero. Nada.

Mr. Simply had called ahead to see if we were going to have problems, and learned that the bar itself is laid out on three levels, separated by two flights of stairs, with "only" four steps each. I get tired of that "only" too, by the way, but that's another subject for another day. I'll just say that, for some of us, one step might as well be the Matterhorn and leave it at that. And let me add that the steps were really, really wide, and it would not appear to have been a problem to have included a ramp next to each flight in the original design, then I promise I'll move on. Except to say that when people say "only" in this context it makes me want to smack them upside the head.

Mr. Simply didn't think to ask about the parking, as parking has been mandated by Federal law for years and it never occurred to us that there would be any issue other than the usual one of there never being enough spaces to go around. (If 15% of us have disabilities, why aren't 15% of the spaces in any parking lot or garage designated handicapped parking? More, at medical facilities? Again, another subject for another day.) So imagine our surprise when we circled the block twice and found no handicap parking on the street, and entered the garage to find, again, no handicap parking. How is this possible?

Don't know what street access was like, other than the parking, as I came in to the party from the garage. But I can tell you that there was a long ramp from the garage to three back exits, one into each level of the bar. That's the good news. The bad news, which we got from the security guard in the garage when we asked for directions, is that the doors are sometimes locked. In which case, we were told, we would have had to leave the garage and go around the corner to get to the front door. At which point we would have been two levels below the party. My only alternative, did I need a scooter or chair to get around, would have been to go back out, around the corner, into the garage and down the ramp, and have someone meet me at the correct back door to let me in. This sort of thing pisses me off.

The party was not on the same level as the restrooms, either. If I'd had a wheelchair or scooter, I'd have had to leave the bar, take the ramp to the next level, re-enter the bar, then repeat the process to get back to my table--risking, of course, being locked out at each stage of the process.

I know that my temporarily able-bodied acquaintances will not always think of these things when they are planning activities that include me. (This begs the question whether the bar owners ever heard of the Americans With Disabilities Act.) Some are not close enough that I would necessarily share with them the ongoing saga of my slowly but inexorably deteriorating physical condition. I know this is not personal: The able-bodied simply take for granted their ability to get around. But I wasn't the only person there with physical challenges: I met a lady on the stair who, upon observing my cane, commented that she had just recently got off crutches. No telling how many there with invisible impairments. So you'd think that a mass of us would at least catch our hosts' attention, wouldn't you?

So maybe I'm being a little oversensitive here, but I allowed myself to have some hurt feelings for a moment, as I sat on the throne in the surprisingly accessible stall in this disappointingly inaccessible bar, feeling left out of things and close to tears as I contemplated the long haul back up eight--count 'em--eight steps to our table.

Simply,

Finally

Image by Getty Images via Daylife

Finally, I seem to have gotten a foot in the door at a nearby specialty clinic. I don't have an appointment yet, but at least I've finally finagled a referral and got my records over there, so an actual appointment for the initial consult should be in the pipeline.

The first thing I want from them is a light-weight, fold-up wheelchair that I can heave in and out of the trunk by myself, so I can start going back to bird fairs and bird walks and outdoor markets and PetSmart. So many places and activities require lots and lots of standing and walking but don't provide wheelchairs for patrons with disabilities, and I don't want to have to always rely on taking someone with me to help--or not be able to go at all, which is how it's been lately.

I have no need to pull a Boeing 757 anywhere with it, and have no idea why anyone would. But there you go. At least now I know I could if I wanted to.

Last night I dreamed I had just received my new, first wheelchair and was out for a trial run with some friends.

When one is disabled, one dreams about it in various ways--sometimes I dream I'm no longer disabled, or at least I dream I'm doing things that I can't do in my waking life, like dance or jog. Other times I dream it's gotten worse, sometimes I just dream about it as it is, and sometimes it doesn't figure in my dreams one way or the other.

This was my first "wheelchair dream" ever, which I think is significant. That I was focused on my renewed mobility and was getting a kick out of my new toy I think is a good omen. Increasing reliance on my cane was hard at first. I suspect this transition is going to be different, attitude-wise.

This chair was the luxury sport model, upholstered in butter-soft leather and a little faster than I was comfortable with at first. In my dream, I ricocheted off a wall making a turn, and it tipped me back a bit which was also taking some getting used to. And being a sport model, there was no trunk space: I had no place to put anything other than in my lap: When I get mine, I want saddle-bags or something.

When I was a kid you would still see in long-term inpatient units those old wooden wheelchairs which really were like chairs on wheels--sort of the forerunners of the powerchair, I guess (which is what I want next, for work, but that is another post for another day). Those old chairs had adjustable recliner backs: Funny what you "remember" in your dreams after 50 years!

Anyway, in this dream, my friends kept wanting to do things for me that I needed to learn how to do myself, like getting through doors, and there were obstacles like the decorative vanity, placed too close to the handicap-stall door in a public waiting room, that my friends wanted to shove over for me. But all in all, it was cool. My friends meant well, backed off when I asked them to, and didn't laugh when I hit the wall.

Just push the joystick, and whoosh--away I go!

 Simply,