11/07/2014

When the Universe Wants One's Attention

I was doing something for my comp class, hyperlinking to a post on the saying "The only disability is a bad attitude," and went ahead and reread my piece from 18 months ago. Ummm. Given my current limitations, it feels like it was one of those attempts by the universe (or God, as you please) to get my attention. So I thought, I haven't written a post in a while, and I haven't been really communicating that much with my friends, either, on a lot of the stuff that's going on, and I clicked over to the blog, and my last post, called "The Cost of Admission," written almost a month ago, pops on screen.


First I'm hit with these words, from the piece 18 months ago:

It's a constant quote going around the disability community: Scott Hamilton's "The only disability is a bad attitude." Of course, it's usually coupled with the picture of an unnamed child with a disability, and it tends to get two reactions: passed around as a positive message or harangued as inspiration porn.
What bothers me most, though, is the quote itself. According to Cleveland Clinic, Hamilton said it before undergoing treatment for testicular cancer. You know, an able bodied person saying this. A cancer diagnosis does not make a person disabled in and of itself.
Whether Hamilton meant to suggest that non-able bodied people were only disabled because they had a no-can-do attitude or not is unclear, and the quote, uttered in 1997, has gone on to have a life of its own.
It's a comforting thought--that if we have a can-do attitude we can overcome disability, but it's bullshit and unfairly stigmatizes those individuals who are disabled, remain disabled, and for whom no amount of can-do attitude is going to overcome a hostile environment and serious, significant impairments.
It's also a platitude, a saying that means nothing at all and offers no real help to individuals who might be suffering. Say it to someone enduring unremitting depression. Go ahead. If the person isn't too down in the dumps to clock you, maybe one of his family members or friends who understands the chains depression puts on a person will. And then you can comfort yourself with that empty platitude. See where it gets you.
There is much we can do to mitigate disability. There is a lot, when given the opportunity, the support, the technology, and the education, that we can do as a society to lessen disabilities, even if impairments cannot be cured/removed.
And certainly, having an attitude that is positive will help (and that goes for everyone--we must believe that we can make a difference, can create a more inclusive, accepting society), but it isn't like clicking our heels three times and just wishing so.
Any meme that goes around objectifying unnamed disabled individuals while pushing platitudes, in the end, does an injustice to us all.

A lot of the piece really hits home still, having spent much of this year depressed, a whole lot more depressed than my family realizes. The kind of depression where I had to work very, very hard to hold on.

When it gets really bad in my mind, I clam up. I've been a napper for the last several years because of health issues, which have decided to up the anty this past month, so no one gave any thought to my pulling back being due to depression, and it's entirely plausible that no one even noticed.

People can't notice what you won't show them.

A month ago, despite being ill above and beyond my normal junk, I wrote this:


Some days, nothing goes the way we plan. Some days, our plans are completely derailed and we want to throw our hands up in the air and give up. Sometimes those days stretch into weeks and months. We can't see any light, not even a glimmer. We waiver, we weaken, and we surrender.


The way we surrender, though, determines our outcome. Do we surrender and give up completely or do we surrender our illusion of control and let go?

It's not been an easy few months, and I would, if I believed in luck, say we've been short on it. But I don't believe in luck, and despite or because of the law of large numbers and all those other cognitive biases I know because I teach them, I greet unexpected events as opportunities and gifts, the chance to grow, to bend, to let our pent up emotions sometimes.
...
Today was like any other day. It had its highs and its lows, its wow moments and its heart aching moments.

I choose to surrender and open myself up to life in all its painful majesty, to accept the cost of admission, which is unbelievably high but undoubtedly worth it.

Since that day, though, we've had to let Lucy go (on the 15th, something we had had time to prepare for) and Little Girl (on the 29th, something we had less than an hour between realizing it had to be done and it being done).

 
Lucy, perking up as we put her in the car.
Under the blanket, though, 
was a cat who a month or so earlier
 weighed in at 17 pounds and who died at 7 pounds.

Little Girl, about four months old, 
a few weeks before we lost her.
At the time, we thought we had a
chance of getting the feline herpes virus
in remission. On the 29th, she went from
having relatively clear eyes to a massive infection 
in her left one that left that whole side of face swollen.


Bad enough to let go of these sweet souls. It's all fresh enough that today Bobby asked where Lucy was so he could put her with the other cats in my bathroom so we could open the back door and let the fresh, cool air in.

In this past month, though, I stopped being able to drag my exhausted self around, had three falls, managed to garble sentences instead of just substituting words, and was forced to admit I couldn't keep going as things were. I'm teaching the rest of the semester online and my life this past nine days has been sleep, grade and eat, sleep, grade and eat, and so on.

Exhaustion is always there, and the mental fogginess is wearisome. I've had bloodwork that has ruled out RA and lupus, and my WBC is fine, but there is elevated inflammation in my blood. My brain MRI was normal, thankfully.

And, miracle of miracles, my diabetes is under diet control.

I will see the neurologist on the 19th and maybe we'll get to the bottom of this. Maybe it's a huge fibro flair and time catching up with me. Maybe it's that and something more.

Even Rick's been having fun--he had a nuclear stress test that showed abnormalities (it did six years ago, too), so he will have a heart cath on the 20th. His heart, my head...well, we are middle aged, after all.


So do I still think that whole platitude thing is dangerous junk? You bet. A can-do attitude with a hell-no body can lead to some serious frustration and overdoing and that just makes things worse. Being realistic and kind to yourself is a whole lot better.

Do I still think it's all worth the cost of admission, as my heart hurts for a cat we loved for 11 years and a kitten we loved for three months? And as I stumble around the house and sleep more hours than I want to in order to get through the ones I'm awake? And as we face some uncertainty about whether I'll get back to where I can walk and talk normally instead of being a rag doll that collapses for no reason? And whether Rick's heart will need a little help?

Yeah...I still do. It's a question I ask myself alot. I suspect as long as the answer is yes, in the end, I'm okay. I'm frustrated, but I'm ready to keep on going, keep working to hold the depression at bay. I can see a lot of my kids and their wonderful selves from my chair when I am awake. And I delight in conversations with them. And I hold the girls when they cry, as they do their homeschooling and realize how screwed up and unjust this world really is. I watch them pick themselves back up and dig back into territory that is not for the faint of heart. I watch the boy and his generous spirit and his enjoyment in discussin geek things with his sisters. I listen to them, when they are all three in his bedroom playing video games, both enjoying themselves and laughing and arguing about various details. And I still have a lot of animals to love on and who love on me. And a sweet husband who held my hand the entire time I was having a panic attack in the MRI machine. 

It's still worth it. I wouldn't change a thing as it would change everything. I'd like some answers, though, and I'd like to wish myself well or work my way there, whatever it takes, but I'll choose to learn what I can from the universe on whatever path it places me.

But please don't tell me the only disability is a bad attitude or you'll see both in one woman.

10/12/2014

The Cost of Admission


Some days, nothing goes the way we plan. Some days, our plans are completely derailed and we want to throw our hands up in the air and give up. Sometimes those days stretch into weeks and months. We can't see any light, not even a glimmer. We waiver, we weaken, and we surrender. 

The way we surrender, though, determines our outcome. Do we surrender and give up completely or do we surrender our illusion of control and let go?

It's not been an easy few months, and I would, if I believed in luck, say we've been short on it. But I don't believe in luck, and despite or because of the law of large numbers and all those other cognitive biases I know because I teach them, I greet unexpected events as opportunities and gifts, the chance to grow, to bend, to let our pent up emotions sometimes. 

So when we were forced off the road this afternoon by an oncoming vehicle and the drop off was enough to shake us up, bend the rim and cut the tire, leaving us a quarter mile from home, I could have let it ruin what had been a lovely lunch with the girlies, a favorite friend and the cutest one-year-old I know, followed by the girlies spending their birthday money on Legos.

Instead I called Rick and he drove down to change the tire. While we waited, a nearby neighbor came out with his jack, ready to help.

The rim and tire are shot, and Honda wants nearly a grand to replace the rim and tire. Not money we have right now, so Rick called around. We'll order an after market rim and new tire from Pepboys for a fifth the cost when we get paid, and they'll order the rim. So, my car is parked for at least ten days. 

Some of the most important lessons I've learned my daughters taught me. They were un phased by the experience and started building their Legos as soon as we got home. Because neither Rick nor I complained, they took it in stride, a minor detour from their planned day, but no big deal.

And it's really not.  Not in the scheme of things.

Not as we live our lives in this ever increasingly shrinking world where we are connected to friends all over the world through the magic of the internet. Not when we have the opportunity to bear witness to the devastation so many people experience.

We talk about our problems, some of us recognizing it's a first world problem and feeling a slight guilt when we know that third world problems are so much worse. They always have been and always will be, so let that vague embarrassed guilt go.

Today was like any other day. It had its highs and its lows, its wow moments and its heart aching moments.

I choose to surrender and open myself up to life in all its painful majesty, to accept the cost of admission, which is unbelievably high but undoubtedly worth it. 

9/26/2014

The Yogibo Max

10% off coupon code: Countering

Last week, I was contacted by Yogibo.com to see if I'd be willing to accept one of their bean bags to review, specifically in terms of how my children on the spectrum found it. When I looked at the site, I started drooling. We were very kindly sent the Yogibo max, which is six feet by two feet by two feet and priced at over $200.

I am in love with this bag. My girls are in love with it. My husband slept on it, it's that big. The cats are impressed. And the dogs think it is theirs when no one else is on it. 

The girls have laid on it, reclined on it, laid under it, laid side by side on it. You name it. They've done their school work on it. The couch has not been used since the Yogibo Max arrived.  That is how awesome it is.

If I had money, I would redo the living room in them! There are several options and lots of colors to choose from.  

Yes, I'm biased. We were given an expensive product free that my girls love, that provide sensory input that is calming, that makes them feel special. But, trust me when I tell you this is better than Temple Grandin's hugging machine. It's soft but heavy enough and large enough that when you lie under it, you feel pressure. I've used it that way. I would totally do a double in my room for me. It would be my safe space when I'm overwhelmed by kids, critters and the demands of my job and my anxiety disorder which tend to render me skittish and unwilling to be touched. 

So, anyone with 400 dollars, consider that to be my Christmas gift wish.

 
Yes, that's the Yogibo max under batman decorations and dogs.

Here's the Yogibo max out of the box.

Definitely dog approved.

Kids testing it.


Go to www.yogibo.com and check out their stuff. Kathleen at Autism Herd also wrote about it and if you up use her coupon code, you can get ten percent off.  Totally worth it!


Http:\\autismherd.blogspot.com


9/21/2014

A Sunday Epiphany: I was due one

You ever notice how epiphanies come  at the weirdest of times, you know, like at six in the morning when you are sitting on the toilet surrounded by six cats of various sizes all meowing and some of them climbing on you? And you're talking to them suggesting that if they weren't climbing their way up your body, you would totally be able to pee quicker and then they'd get fed quicker and it would be a win-win for everyone and then the dogs wander in and wonder where their cat food is?

Yeah that. But still I had an epiphany, which the critters were not impressed with when I yelled loudly, "He was totally scripting!" This epiphany was in relation to a conversation I was having with Bobby, which I don't go into detail here, because it wasn't the conversation so much as that it took me 8 hours to get what was going on. He was using bits and pieces of dialogue to explain something I didn't get at the time.

So we had a talk this morning about emotions, feelings, moods , innate temperaments and situational behavior, which was probably me scripting from prior psyc lectures, but whatevs.

Anyway, after we were both thoroughly confused and exhausted but maybe realizing we should skip these kinds of talks in the future (I'll let Lily do them), he kissed me on the cheek and took the dog for a walk without being asked,  by the dog or me.

I'm pretty sure that's because I'm such a motivational speaker.

9/20/2014

Whatever. The other title was great before you ate it, Blogger.

“I've crossed some kind of invisible line. I feel as if I've come to a place I never thought I'd have to come to. And I don't know how I got here. It's a strange place. It's a place where a little harmless dreaming and then some sleepy, early-morning talk has led me into considerations of death and annihilation.” 
― Raymond CarverWhere I'm Calling From: New and Selected Stories

I was freaking insightful but blogger ate it, so you don't get to appreciate that incredible epiphany.

Don't worry. There wasn't really an epiphany, I rambled about being lost, absent minded, confused and unsure about everything.