There’s an old children’s saying that goes “Sticks and stones may break my bones, but words can never hurt me.”
Most of the time this is true, but there are occasions when words – outright, manipulative lies, say – can inflict incredible pain. Here’s a case in point.
My wife – we’ll call her C – is disabled. There is no doubt about that. She’s registered as disabled and has qualified to receive Social Security Disability. To those who scoff that anyone can be registered as disabled, I can say in all honesty: you don’t what the fuck you’re talking about.
C has been re-assessed a number of times since we were married almost 16 years ago, and each time has qualified to continue receiving SSD. Most recently the SSA decided that her condition is never likely to improve and so opted not to re-assess her (which is quite a set of hoops to jump through, believe me).
She was in this position before we even got married, but in the last several years the main focus of her disability has changed and it has worsened to the point that she is no longer ambulatory.
The turning point was late summer 2002 when one of my sisters and her family came to visit us. C had been standing in the kitchen for only a little while and at first none of us noticed that she was in tears with the pain – just by standing.
Among a number of ailments, C has severe degenerative arthritis of both knees. Some years ago her Rheumatologist examined X-rays of both knees and declared that there was no discernible cartilage, so her joints are bone on bone. If you know anything about pain levels, bone pain is among the most severe, barely managed even with strong painkillers (we’re talking Hydrocodone and Oxycontin here).
My wife even qualified to have both knees replaced, but – and this is most bizarre – having asked the insurance company for permission to perform the surgery, and received it, her orthopedic surgeon at the time then refused point blank to go forward, and what’s more, refused to discuss the reason for his decision, refused even to discuss it with other medical professionals. To this day we have no idea why.
The situation has worsened over the years in fits and starts, but the last five years have probably been the worst, as C’s mobility has reduced from being able to walk from our apartment to the car (maybe 200 feet) and handle some stairs, to being mostly bed-ridden (70% or more of the time – that means the pain abates just enough for her to get out of bed for a few hours maybe 1 day in 3 or 4 if she’s lucky) and barely able to walk to the bathroom (15 feet) without a cane1. Steps or stairs are impossible. We had our bathroom modified to be more disabled friendly and I took on all of the physical tasks that C could no longer participate in, such as cooking, cleaning, laundry, and so on.
When she does feel up to it, C needs a walker to get from the bedroom to the den or the living room and that’s as far as she can manage.
To get her to the car, about four years ago we bought a transport wheelchair (specifically a bariatric transport wheelchair – it’s much wider than a standard wheelchair).
To those unfamiliar with the difference, a transport wheelchair doesn’t have the giant rear wheels that a regular wheelchair possesses. A transport wheelchair is designed solely to allow the occupant to be pushed by someone else from point A to point B. It can’t be propelled by the occupant. Here’s a photo of my wife’s beast:
The Transport Wheelchair
The rear wheels are small, only a little larger than the front wheels. Unless you have orang utan arms, you’ll never reach them while sitting in the wheelchair, let alone have the upper body strength to manipulate them.
You would think that a medical professional would know this – a nurse, say? – but it would appear not, as you will see.
So to go anywhere outside the apartment, my wife has to be pushed by me, and I have my own health issues that make it no easy task (arthritis of the spine and now of the left hand (Heberden’s nodes – look ‘em up) as well as barely controlled high blood pressure, and chronic paresthesia in both feet and parts of my legs, possibly the result of impacts to my spine when I was younger that have triggered spinal adhesions.
Anyway, C can still drive a little (I don’t, for complex reasons that have to do with not already being a driver before I came to the US) but her knees restrict the distance. So I push her to the car, help her get in, collapse the chair and put it in the trunk. When we reach our destination I reverse the process. Any trip is always a two-man effort. Well, one man, one woman, one wheelchair.
Usually, after about 5 to 7 miles of driving in street traffic, the pressure on C’s knees caused by pressing on the pedals produces sufficient pain that it takes her days, literally, to recover from the task. (We don’t have the money to get the car modified to change the controls, although a change to C’s medical insurance – from a Medicare HMO to a PPO – might give us the hope of getting help with the task.)
For this reason we stay close to all our medical providers (who are excellent, and we would be fools to give them up), but because of the physical trauma involved, the visits to them are few and far between. In 2010, for example, I think we made just two trips to see our GP. We were supposed to make 12.
C’s brother, however, is of the conviction that if you’re in a wheelchair, you can’t drive a car.
Whaaat?
Fifty years ago I used to push our old art teacher in his (regular) wheelchair to his car (a Mini) and he would haul himself out of the chair and into the car, then collapse the chair and pull it across his chest and into the well where the front passenger seat would have gone.
Is it really possible to be alive in this day and age and dispute whether someone disabled who requires a wheelchair can actually drive a car? Just how out of touch with reality do you have to be?
The most amazing thing, though, is the complete refusal of members of C’s family of origin (who live some 3,000 miles away and have never bothered to visit her in all the time we’ve been married) to believe that she is disabled.
We were recently evicted from our apartment (another long story, and not a happy one, that also involves action (and inaction) by that same family – I may vent to this blog on that subject too).
C’s brother had the temerity to proclaim that C couldn’t be disabled because “if you’re genuinely disabled you can’t be evicted.”
Whaaat?
An attorney friend offered to write to him to try to disabuse him of that belief – we figured if he didn’t believe us he might at least accept the truth from a lawyer who can tell him what can and can’t be done in an eviction – but that went absolutely nowhere.
C’s sister-in-law even had the gall to call the attorney in response to the letter to the brother (a violation of the law, since she was not named in the letter, which was a privileged communication between the attorney and the brother) and tried to pull the wool over his eyes. Big mistake. Never, EVER, lie to a lawyer.
It gets worse. The sister-in-law, who HAS to know better (she is or was a nurse), has been peddling the same lie about C’s disability to other members of the family – namely that C is not genuinely disabled or she wouldn’t have been evicted, and that if you’re bed-ridden you can’t drive a car.
I can’t believe that in one of the most advanced countries in the world there is this backwater mindset that thinks this way.
It is staggeringly shameful. The more so when these people have made it clear that they regard themselves as pious.
In their shoes, I’d have died of shame and embarrassment long ago.
1. “Cane” is rather a misleading term for this aid – it’s heavy metal (2lbs or more) and could probably stop a charging bull elephant.
Fun Fact: our car, a Toyota Camry Solara, is seven years old. It has about 12,000 miles on the clock. You do the math. Most cars clock up about 12,000 miles a year in normal use in this neck of the woods. Does that suggest it’s not driven very much? Could that be because the driver is, ooh, what’s that word? Disabled?
