Seems I’m always doing personal stories, and this is another..
My thesis in this one is that people with disabilities may be (in some situations) more able to adapt to crisis, more flexible in finding ad hoc solutions than their able bodied counterparts….
I think about how my former roommate, also a woman with disabilities from a car accident, and from Type II diabetes… has begun to come out the other side of economic and health disaster…without the supports that I may be getting…and I sometimes get uncharitable thoughts about the able bodied…
“Man, if they’d just been through this they’d probably be weaving baskets in a hospital sun room with Nurse Ratchit by now…”
I’ve detailed previously how she lost her job and home.
In September 2010 she wasn’t on the medicines she was able to find later, and pain from her diabetic neuropathy was bad enough that she couldn’t sit through eight hours of a cubicle phone call center job. She filed for disability. That got denied.
In Feb 2011 she got better medicine (samples) for the neuropathy, and tried to look for work again. She’s able to handle call center work again, but she’s still in a great deal of pain each night.
In March 2011 I had to relocate to Ohio to take wheelchair accessible housing and be near family there.
She and our dog drove cross country in a van, from Denver Colorado to the suburbs outside Charleston SC with her small store of possessions to her brother’s house…where the TV is set to Fox…
He had agreed to take her in temporarily. She’d had two very successful phone interviews with a company, and She had a job with them the day after she arrived. There was some irritation and scorn from the brother, annoyed that she didn’t get a better job, that her salary was close to minimum wage with no benefits, less than half of what she’d made at the prior call center…part time, but a job. She’s been promoted already, and they like her work. She has a bedroom to hide out in when Fox news is on, but sometimes her family comes and asks her rather strongly to go sit and watch Fox with them…She’s running out of excuses not to…
Our dog got the best part of this deal…a real fenced yard to play in…
That was in April. She has paid him rent from the moment she got paid, and purchases her own food in order that her brother not have to spend food $$$ on her behalf (the food part actually seemed to offend her sister in law, who felt her hospitality re: food was being rejected. They talked it out, and now my friend does participate in some mealmaking planning and eating with the family.)
She had money for one asthma medication and no diabetic medication. (And no insurance) So…she went without… for five months. Moral Hazard zombies about healthcare can just go spit, because this is a classic example of what really happens. You forgo care…
Luckily, nothing happened.
She just recently found a once a month free clinic in her town. she now has samples and prescriptions for everything she needs including test strips for diabetes she could never afford even at the old job w/insurance etc. And a doctor to list as her primary physician and a follow up appointment in December.
(I had researched for months and not come up with this for her. I hang my head in research shame. Evidently that Masters in Library Science I’ve got ain’t worth anything.)
She’s discovered that southern hospitality can be a real, true thing…her co workers have heard her story and take her out to lunch, give her connections to repair her car, offer some housing options (they haven’t panned out yet, but the offers are heartening.) She’s also giving back by picking up a co worker who has no car and driving them to and from work because his housemates won’t bestir themselves to help.
She has been given a deadline by her brother. She must move out by Oct 31…her decimated credit rating will make finding an apartment difficult…but she’s looking.
She’s got no working laptop right now, but hits the library computers to search on her days off. She’s confident she’ll find a place.
What really irks me is that nobody’s given her props for driving across the country alone to a strange town knowing only one person and getting and keeping a job in this economy. Nobody’s proud of her for hanging on to this job for dear life even when she hurts.
I believe part of the reason she’s managed this has to do with disability.
When your level of pain and level of function are fluctuating weekly you have to adapt to a new paradigm perhaps as often as daily…so you get used to doing that and can apply it to other situations in your life. You have a more visceral understanding of what it means to hit the reset button, start over, and for god’s sake have-the-crying-jag-later-but-not-now.
I just wish they gave parades for this sort of thing. After all so many unemployed/foreclosed folk have similar stories to this…it would make sense…
Went to the bank…made a 25.00 deposit… rolled across the parking lot to the store…had to buy stuff anyway, was (internally) panicked about the card, paid for groceries by ck, pulled over, painstakingly went through the purse. No card no how. Big sigh…could have dropped it in the bank parking lot or the store aisles…realized that even though a transaction is set to automatically debit today using the card number (not the check # ) “I just have to freeze that card…” rolled back across the parking lot to the bank (and darnit I was just beginning to cry by then) The teller I had seen said said, “Oh, Jean!” and came around the teller wall and handed me the card. I had left it there. Thank you Bank People.
It makes me think about the fact that this happens to everybody. Able or not. Everyone loses cards, keys, the really vital stuff. Since I can leave the apartment and zoom around at this shopping place that is two minutes roll instead of the nearly completely homebound state I was in my last two years living in Denver, I’m having more experiences common to both people with disabilities and the able bodied…
Americans and Libertarianism, or Objectivism, General “I’ve got mine so screw you,ism.” have finally produced the embryo that will become the 21st century Roman Mob.
Everyone has heard by now that someone in the audience of the latest GOP/Tea Party debate cried out “Let them die!” and was cheered roundly for it.
Pick that image up in your head and look at it. Examine it from all angles.
Someone wanting a voice in political power wished for death *because* someone had no insurance, and he and more like him cheered for it.
It began when that epitome of journalistic integrity Wolf Blitzer, lobbed a hypothetical question to Ron Paul about who should pay the medical expense of a formerly healthy 30-year-old man, who did not buy insurance for himself, getting ill and falling into a coma and being uninsured.
It’s important to be clear that Ron Paul himself did not say those words. He called the freedom not to insure against risk a great good (which is troubling in itself.)
It’s not even (in this instance) the policy differences I take issue with. (I really do of course, but I don’t have the alcohol or the time to do so now except to say that single payer is the only thing that will fix that mindset.)
It is the obvious jolt of positive the audience member got when he yelled, “Let him die!” followed by a group of like-minded audience members cheering that I take issue with.
If I could chat with that insolent young loudmouth, I might say this:
Well,sh!t Audience Member, let’s talk about this for a minute. Let’s take a long, hard look at what you were wishing for so fervently, shall we?
I hate what you said…I still don’t wish death on you.
I’ve seen death close up (nearly left the stage myself too) and it isn’t always ‘merciful,.’ as one might think the death of a formerly healthy thirty year old comatose man might be. I don’t wish the wasting away, the depression, the hours and days of exhaustion when literally everything in your body hurts so there’s no way to differentiate when someone asks. In many cases you lose the ability to eat or drink near the end. You may be in so much constant pain that you cry out or in so much pain that you cannot cry out at all.
That’s what you called out for. That’s what your fellow Cheerheads were cheering for.
If you listen to RW radio or remember reading Ayn Rand/National Review/Grover Norquist/Glen Beck/Ann Coulter or even old schoolers Krauthammer, Will or WF Buckley …it might occur to you that your philosophy about the uninsured, while having the virtue of being simple and direct…should remain as a gloriously incoherent philosophical discussion of what AnybodyUnlikeYou ought to do if they fall ill without being in thrall, up to their tail in premium costs to BigInsurance. A discussion of ideas. A ‘what if’ scenario that even you realize we aren’t ready to play out in the real world.
But no. You want it to play out and then the dead can just get off the stage, right? Don’t let ThisMortalCoil’s screen door hit their bones on the way out…Heavenly peace as a lovely parting gift and thank them so much for playing. We really respect the family and the patient for not costing us a great deal of money before they expired.
But here’s where it gets serious.
What if that was a loved one of yours, you loser?
Or friend or neighbor or parent, or worse yet your child. The issue is that you are a heedless, clueless nightmare of a person who not only cannot conceive of that ever happening to you, or someone you love, but hopes if it happens to anyone else that they just get out of the way and give you more space to occupy on this earth.
Take my word for it. Anyone on the planet is one car accident or medical error away from just that situation.
If they were someone close to you, I’d bet you’d rather die than say “Let them Die!”
And the cheerers? A word to you too. Did you giggle with glee at the reaction you got? How much joy did you take from this idea of suffering.
I’m a barbarian, and sometimes not fit to associate with civilized persons, and well I know it.
I’ve typed a paragraph seven times about what I hoped my reaction and action would have been, had I been a nearby member of the same audience. But I can’t say it. Because it would make me just as barbaric, just as much a member of the mob as you are.
so, go in peace, shut your mouth and grow the hell up.
Before I start here, I know that Alzheimer’s has got to be one of the most physically demanding and emotionally messed up situations for a spouse who is also a caregiver to face.
And, I realize that many might make the decision to legally separate (and/or divorce) that patient, while leaving care options available to them.
If a friend or family member came to me struggling with this issue…or having made the decision and already implemented it…I would not be angry. I would try really hard not to judge…but I would hope the person might stay nearby…to catch all the good days they could, to chat with their spouse on those good days. That would give the spouse some moments where their fear and confusion and loneliness would abate for awhile. (and if I was able to visit with the spouse on good days, I’d do it as well, because isolation can really mess you up more, on top of the disease itself. )
(and, separate from that, if they were moving on, I’d imagine it would simultaneously contribute to some guilt, and a little sanity.) An awful awful situation.
But that said:
Pat Robertson, apparently, is one of those folks. that advocates separation and moving on….
Should a leader of a slice of evangelicals that forever and always is making law and having sermons, retreats, rallies, colleges and bible studies all hammering at the idea that the wives walk three steps behind their men with bowed heads, that the husbands get to make all the decisions etc….
be speaking from his (ostentible) perch as a preacher, a moral arbiter….telling spouses (and I’ll just betcha in his head he’s thinkin’ husbands,) that since alzheimers is “…a kind of death…” then it’s ok to separate and ‘move on?’
I think it’s one thing for a spouse on the ground in this battle to make that decision and act on it.
It’s quite another for a preacher to say these things to his followers.
The next time I hear a politician say “I cannot support”________can I hear a sensible reason like, “I was elected by my constituents. I work for them. and I cannot support ‘________’ because it would really screw my constituents
Not ‘because my lobbyist/banking overlord told me to.’