This is about my wife.
Dorian.
Aka coffeesister.
She’s a sickie-poo.
She’s been that way for years; so much so that I hardly notice anymore. We take it for granted around these parts.
Now, lest you think this is going to be one of those posts where someone rambles on ad nauseum about their ailments, fear not.. I detest those and don’t want to go there. No, I just want to talk about how much fun I have living with someone who can barely function.
It’s a barrel of laughs.
Like that time we were at Target and she finally gave in to using one of those electric cart things. Up until then she’d just walk around the store, slowly and laboriously until she’d shake from pain. She confided in me that she didn’t WANT to use the electric cart because of what it meant; that her health had deteriorated to such a state that walking around for an hour was no longer possible.
She’s not obese – she’s really kind of a waif for 5’10″ – so it’s not like when you see heavier people using these and you know they’re doing so because it must be sheer agony to put all that weight on those frail knee joints.
No, she looks just fine. She doesn’t look like she’d need that cart. She knew this, and was concerned about people judging her. “Screw them,” I said. “If you’re in that much pain then just use the damn cart.”
So she did.
It was delightful when we got over by the electronics section and she had some trouble maneuvering. She was a first-time user and getting the hang of the handle-bar switches was a challenge.
Ask the flashlight rack she ran into.
“Are you having fun, dear?” The lady behind the counter kind of glared when she said it, as if Dorian was having a blast running into things like a rampant adolescent. She glanced in the lady’s direction.
“Excuse me?”
“It would just be preferable if you didn’t play with the electric carts.”
Here I thought that the concern about people judging her was a figment of her imagination. Surely nobody really CARED if she used a stupid electric cart to get around the store. I guess I was wrong.
I follow this blog called The Deal With Disability that’s authored by a 26-year old woman named Eva, who happens to be disabled by cerebral palsy.
You wouldn’t think so, but it’s a friggin’ hoot.
Eva doesn’t walk or talk, and she requires an aide or someone to be with her most of the time to assist with basic functions that most of us take for granted. Her writing is spectacularly funny as she points out the silly attitudes that most people have as she encounters them throughout the day.
She attached a clandestine video-cam to her wheelchair to record odd encounters, which she then posts on her blog. A lot of them are reminiscent for me, as my first girlfriend had CP. She could walk, so she wasn’t nearly as afflicted as Eva is, but I remember the stares, the comments and the misunderstandings that are exactly what Eva endures. It seems as though part of the time she’s invisible and when she’s not, she’s misunderstood.
Eva has a great sense of humor about it all and twists every encounter into a nice pitcher of delicious lemonade. Her blog is a worthy subscription.
Eva isn’t sick, but there’s one aspect of her disability that she shares with Dorian, and that’s the invisibility. Although in Eva’s case I think she gets ignored because someone doesn’t want to deal with her, or even look at her (she’s gorgeous, by the way.. so why wouldn’t anyone?) With Dorian, they don’t believe it. She doesn’t have the powered wheelchair and distorted limbs that accompany a lifetime of non-use.
She seems fine.
This occasionally generates accusations of faking, like the attitude of the Target employee, at which I scoff because guess what? I’m her caregiver, and I’m like the worst caregiver in the world. Trust me – she’d rather get up and make her own tea because I never add enough honey. She’d rather do her own laundry because I mix colors with whites and don’t fold properly afterward.
She gets tired of instant soup and pasta with mushroom sauce out of the can.
After nearly 20 years of living together I can say first-hand that she’s not lazy. There’s just not a lot of stuff she can do, like.. almost everything. And she’s been stuck living with this bachelor for years, who has remained a bachelor and just lets her in on it when it’s dinner time.
We’re not quite sure when all of these ailments started, since it all came about so slowly, and we’re not sure what’s going on inside of her because we’re without a diagnosis.
“GASP! WHAT? YOU HAVEN”T BEEN TO A DOCTOR?”
Yes, dammit. I mean no.. we haven’t.
Well yes, we have.. but.. no.
Some years ago she went to a doctor who offered to NOT diagnose her, saying that if she did then Dorian would not be insurable. We paid for that series of visits out-of-pocket with what little money we had at the time, and the doctor warned us that should she be diagnosed it’d be a pre-existing condition. She went on to say that she’d probably not be insurable anyway, given that any insurance company might want a physical or at least to ask her a slew of questions that would point to her malady.
If she answered truthfully – no insurance. If she lied and was found out – well, we just won’t go there.
So the doctor said something about Fibromyalgia and Chronic Fatigue Syndrome and getting plenty of vitamins with a yoga regiment, and that was the last doctor to say anything about it.
I remember the first accusation of faking. It came around at about the same time we were seeing the doctor, and it was from the mother of a close friend. Now, this friend reads my blog.. and she loves her mom.. but I know SHE knows that her mom can be a piece of work most of the time, and that’s putting it nicely.
Her mom is a society lady. If you’ve ever seen Gilmore Girls, think of the character of the grandmother, Emily Gilmore, who was played by a fabulous actress named Kelly Bishop. Emily Gilmore was judgmental, spoiled and self-centered.
Just like our friends mom, who I’ll call Raquel.
So we’re all out to dinner one evening, and it’s a group event. We were involved in this theatrical production with our friend and at the dinner we could bring friends and relatives, so she brought her parents. We ended up at the same table, where somehow the subject got around to Dorian’s health problems. Dorian was stage-managing the production but barely getting through it, being plagued by blinding headaches.
“Why is this happening? What’s wrong with you?” Raquel hammered at her, as if she’d been a drug addict for years and refused to put down the crack pipe. Dorian hesitated before answering, “Well, we went to a doctor who said it was Chronic Fatigue Syndrome complicated by Fibromyalgia, and..”
“NONSENSE!” Raquel was adamant, and spoke with a pious authority. “There’s no such thing.. what kind of doctor is this? It’s all in your head. You need a Psychiatrist, not a medical doctor.”
We moved to another table and decided not to talk about Dorian’s ailments, or talk to our friend’s mom ever again.
She didn’t understand the world we live in – uninsured, living from one small paycheck to the other, taking what we can get here and there as opportunity comes along. A Psychiatrist is out of reach, even if that’s what’s really needed. I’ll concede that I could probably use one but I know for sure that Dorian has tiny nanobots ripping her apart inside.
I see the results all day long.
Raquel didn’t understand that we live in American poverty, which isn’t quite as bad as, say, Nigerian poverty, but it does mean that if you can’t afford a doctor or health insurance then you’re pretty much screwed. Unless you get hit by a bus and they take you to the emergency room, where they’ll just treat your bus accident injuries and not your twenty year onset of Chronic Fatigue Syndrome that’s complicated by Fibromyalgia.
Raquel’s not alone in that – few seem to understand.
I’ve had various jobs over the years and Dorian even held the position of a video-store manager for a short while, but insurance has always been priced out of range for us, even when going through employers, plus there’s that whole pre-existing condition thing. I can just see paying eighty bucks a month to get her on some kind of plan, only to have them refuse to treat her because all of her symptoms have been around for years.
This is turning into a health insurance post, and I feel kind of sneaky about it. I didn’t really mean for it to, but let’s look at these symptoms..
1. Chronic, debilitating pain, all of the time. She only showers about once a week because it hurts too much.
2. Blinding migraines that get demoted to simple headaches on good days.
3. She used to be able to walk down the detergent aisle of a supermarket, but no more. The chemical sensitivity causes her to blackout from the fumes of numerous detergents and cleansers, even though they’re packaged and bottled. She gets quite wobbly when near an aisle like that, and I’ve found her collapsed on the floor of more than a few supermarkets.
4. Inability to think and process thought. Lack of memory. Lots and lots of neurological stuff going on. Mistaken identity, misappropriation of memories, nightmares on the rare occasion she can manage to fall asleep.
5. Inability to walk for more than twenty minutes, and that’s with a cane. Too much pain.
She’s 40, folks.
Ten years ago she had all of these symptoms at about half the strength they are now, which leads me to believe that in another ten years it will all be doubled.
I don’t think she can take that.
So yeah, I guess I’m saying she won’t last another ten years if something isn’t done.
I’m not a politically minded guy. I detest politicians and their issues, and I refuse to engage in debates over these things. People get really silly, like a longtime friend who we’d reconnected with on Facebook who said that we don’t need health insurance because we can go to any emergency room and be taken care of.
Another friend, whose blog addresses christian issues, asked his readers about their thoughts on health-care. One person actually said that everyone – believers and non-believers alike – should just head to the local church and get anointed with oil while having the church elders pray for them. I’m really hoping that guy doesn’t happen along someday if I’m ever in a horrific accident and pour oil on my head as I scream in torment with shards of glass piercing my eyeballs.
A lot of people get really stupid.
There’s Judy, who runs the gift shop at the hotel where I used to work. She’s not “pour oil on your head” stupid, but she was always full of suggestions when it came to Dorian. She’d ask, “So how’s your wife?” and I’d tell her she was the same, and Judy would suggest this and suggest that until I finally had to ask her one day to stop suggesting things. She meant well, but it was all useless.
This is why I don’t talk about her ailments. People have all kinds of suggestions, most of which are worthless, and they ask me all kinds of questions that I can’t answer. I’m a bottom line kind of guy, which means that all I know is she’s sick, she has been for years and there’s not a damned thing I can do about it except try to get the honey in her tea right and fold her tops so they don’t wrinkle.
Okay Rhodester, so if you “don’t talk
about her ailments,” then why this post?
Health care is a BIG issue right now. Probably the biggest it’s ever been. That being said..
I find it odd that I can go to a post office and send something to someone in New Jersey for under forty cents.
I can go to the department of motor vehicles and get a license to drive for a minimal fee.
If I don’t file my taxes, federal agents come after me and make all kinds of fuss about it and put all kinds of effort into coercing me to do so.
But I can’t walk my sick wife up to a doctor and ask that she be taken care of, because I can’t afford it.
There’s all kinds of talk about how people shouldn’t have to lose their houses and/or cars to take care of someone who’s sick. I agree, but I’m not worried because I don’t have a house or a car to lose. I don’t have anything.
Just a sick wife and no clue.
RhodesTer on Twitter/Facebook/Subscribe to this mess
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