25 April 2012

Disability Tango

The April DSMA Blog Carnival prompt and some other recent discussions got me thinking about disability in general.

Disability. Handicapped. Disabled. Those words leave a bad taste in many people's mouths and minds.

People make comments (and I don't think they realize how offensive these comments are) such as "I would rather die than have your disability", "I could never live with a disability", "How can you live with your disability?"

And then these same people, without irony, say things like "You should rejoice in being disabled!" or "Your disability is a blessing!"

And then they turn around and ask just flat out stupid questions like "You're allowed to get married?" or "How much does your disability drain our economy?"

And then they turn around, again, and wonder why people with disabilities are on guard and don't give them health updates.

It's no wonder that many shy away from the disability label.

There's even a discussion on tudiabetes about T1 being a disability. There are comments were people are genuinely shocked that T1 is a disability. Umm...diabetic children wouldn't be able to have a 504 in the US if T1 weren't considered a disability.

The Americans With Disabilities Act (ADA) states that a disability is
(A) a physical or mental impairment that substantially limits one or more major life activities of such individual;
(B) a record of such an impairment; or
(C) being regarded as having such an impairment (as described in paragraph (3)).
(2) Major Life Activities
(A) In general
For purposes of paragraph (1), major life activities include, but are not limited to, caring for oneself, performing manual tasks, seeing, hearing, eating, sleeping, walking, standing, lifting, bending, speaking, breathing, learning, reading, concentrating, thinking, communicating, and working.
(B) Major bodily functions
For purposes of paragraph (1), a major life activity also includes the operation of a major bodily function, including but not limited to, functions of the immune system, normal cell growth, digestive, bowel, bladder, neurological, brain, respiratory, circulatory, endocrine, and reproductive functions.
(3) Regarded as having such an impairment
For purposes of paragraph (1)(C):
(A) An individual meets the requirement of “being regarded as having such an impairment” if the individual establishes that he or she has been subjected to an action prohibited under this chapter because of an actual or perceived physical or mental impairment whether or not the impairment limits or is perceived to limit a major life activity.
(B) Paragraph (1)(C) shall not apply to impairments that are transitory and minor. A transitory impairment is an impairment with an actual or expected duration of 6 months or less.
I know. Legal gibberish.

But I can understand the confusion. I don't always feel disabled, even with T1. When my bg is 101 mg/dL, when I'm just hanging out, when I'm laughing and enjoying life, I don't feel disabled. I feel enabled.

But there are other times when I've been up all night dealing with highs or lows, when I have "my heart thinks we should randomly have a pulse of 300 right now" episodes, when depression takes control, when any of these problems wear me so thin that I don't feel human...I feel disabled. I feel broken.

I want to be comfortable in my own skin, but that requires being comfortable with all the imperfections, the disabilities, as well.

But there are two sides to this tango, each holding a gun to the other sides head. What about cures for all these disabilities? Should I hope for better cyborg parts, better medicine to make my disabilities easier, but they won't go away? Or should I hope for a cure? Am I comfortable enough in my broken body that I think of my disabilities like my hair (it's there, and sometimes there are bad days)? Or am I frustrated enough with all the medical problems that I'm willing to give up things that are apart of me?

Do I regret being disabled in all the ways I am? No. Am I over thinking this? Maybe.

13 April 2012

Your daily kitty story: 13 April 2012

So, my mom told me if I didn't write down the funny things our kitten did, she'd hurt me. I love you too, Mom.

Anyway, this is Tigerlily.

She's 14 weeks old, and with a face like that, you know she has to get in to trouble.

She has recently discovered that she loves going under to covers, along with all the other cat things, like trying to help me type this post. Did people have problems with cats on typewriters?

Anywho, she likes going under blankets and chewing on things, like toes! I guess toes and fingers are delicious. The first night she did this she had been super hyper all day--running up the cat tree, down the cat tree, up the cat tree, down the cat tree, hang from a scratch post like s monkey, chase the feathers, run around the sofa 50 times, run to the bedroom, run to the sofa, run to the bedroom, run to the sofa, attack the human's hair...well, you get the idea.

She was a little calmer at bed time, and I thought after all that running she might be a bit tired and sleep, instead of pouncing on my head. She slowly disappeared below the blanket, carefully following my body line. Her soft bunny like fur tickled all the way down and I did my best not to squirm. She finally settled at my toes.

Oh, crap, not my toes. My feet are so ticklish and I am known to kick when tickled-just ask my dad or my husband. She started gingerly licking my feet. Okay, not too bad. I can handle this. She started rubbing her face all over my feet. Gross...think about how grossly weird it is that she's rubbing her face on your feet and not how much you want to squirm away. The next thing I knew, she was darting up out of the covers, pounced on my head, jumped from my head to the floor (it's not a far drop), ran under the bed, came out the other side, attacked her scratch post, jumped up on the bed, somehow landing on my feet, ran back up to the top of the bed, tried to shove her nose up my nose, and then scurried back under the covers back down by my feet...where she waited.

She surfaced a few minutes later, probably because I wasn't paying attention to her amazing obstacle course abilities and to the star athlete, and I was instead checking Facebook and twitter. In the glow from my cell phone, she gave me this look like nothing weird had happened, and proceeded to flop across my face where she purred herself asleep.


11 April 2012

Dear 16 year old me

Hi, 16 year old me. It's you, well me, at the lovely age of 23. Don't believe me?

I know that secret that you have, the one about what happened between fifth and seventh grade. I know about how you're dealing with it, and guess what? You're right. It will destroy your family when your parents find out.

You're doing your best to hold it all together and your falling apart at the seams, but no one would guess. You've made yourself numb, and that's the only thing keeping you going.

You're terrified about the pain in your chest that started in your 9th grade English class--you remember the first time you felt that pain, the feeling of someone taking a butcher knife and stabbing your heart. But you refuse to tell anyone about that pain.

You're one of those people with birthdays early in the school year, so you get to be 16 for most of your sophomore year. You're driving to school, all the way in a different town, because let's face it, that other high school would have made you even more miserable.

I'm sorry to inform you that life will indeed get worse before it gets better, and it does get better. You will be betrayed, you will be abused, and you will wonder if it is all worth it in the end.

There are good times, though. You will get to go to Japan, you will have a puppy who will love you no matter what, and she is a sock thief. Your younger brother will adore you no matter what as well.

As much as you hate yourself and do incredibly stupid things (like doing a max bolus without eating and then taking NyQuil in the hopes that you won't wake up. Spoiler: you always do), you will go to college, but not where you think you will. That will all work itself out. That boy that you think you love in high school isn't for you. Listen to what he wants for you, and know that you could never live an entirely submissive life where you could not be intelligent. He doesn't want you to go to college, to learn, to explore, to have a life. He will cheat on you and break your heart.

But you will find your best friends, your people. All this time you have felt like an alien, like nothing about you is right. You're an introvert, an engineer. These people in high school are not meant for you. They are not worth torturing yourself. They are not worth contorting yourself into things you are not.

I can't say that everything is perfect for you seven years later. You'll still be battling depression. You'll have gone through diabetes burn out. You'll finally have a diagnosis for that stabbing heart pain. You'll have a kitten who likes to knead and lick your jugular. Is she trying to kill you? I have no idea, but she's adorable. You'll be married to your best friend.

You will start to feel better, but it's a long road.

But I know you can make it through it all.

Support

For the April DSMA blog carnival, the question is
Describe your ideal diabetes “support group”? What would you discuss?
I'll be honest. I love the DOC. It's my kind of group. I'm rather shy in real life, so the internet is awesome for introverts like me. I like mulling things over before sharing them, and I like having the internet time buffer for that.

That being said, some things just need to be done in person, face to face. Hugs. Hugs are a face to face thing. I can offer all the e-hugs and internet yummies, but real life hugs and tangible gifts always trump the electronic ones.

Having chronic conditions is a complicated thing, and not just all the medical minefields. It's a pain in the butt. You're supposed to accept it, even rejoice in it. No one, besides your chronic condition comrades, gets what it's like to have that disease.

I love my friends and family, but I can't talk to all of them about my conditions. It will more than likely turn into one of the following:
  1. You should try X because X will cure you! And it's your fault for not being cured by now because you should have tried X ages ago.
  2. Awkward silence
  3. So...ummm...that's absolutely terrifying. Are you going to die?
When I feel the need to rant about getting the first test strip out of the container, the non d-people just aren't going to get it. We I need to celebrate that I'm 100 mg/dL after eating pizza, the non d-people just aren't going to get it. When I need to cry because I've had to change my site five times in a day, the non-d people just aren't going to get it. When I need a hug but I want to punch anyone in the face that gets too close because my bg has been in the 400's and just isn't coming down, the non-d people just aren't going to get it.

Ideally, we would be able to laugh, to cry, to celebrate, to be angry, to be scared, to offer support, to ask for and offer advice, and to most of all walk that fine line of "This totally sucks, but I'm glad I know you", but we'd also be able to talk about things non-d related. We are people with diabetes, yes, but we are people first. I want a group of people, a group of friends who at least comprehend the emotional and physical toll that this disease takes.


This post is my April entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2012/april-dsma-blog-carnival-2/