Daily Kos

Entering the world of disability eleven years ago as a young woman, age 22, was a shock to me.  I became paralyzed from the waist down from a car accident in September of 2000.  The manner in which I became disabled meant that between one second and the next I became paralyzed, and I entered a world that seemed more like Alice in Wonderland than any kind of reality I knew.  I could write pages and pages about the strangeness of that experience (and I probably will, someday), but what I want to talk about today is how it feels to be a woman with a disability.  

This is an edited version of a post on my blog www.IAmLearningDisabled.com

It is vitally important that all people have a safe place. This is especially so for learning disabled (LD) people, who may experience the world as much less safe than most neurotypical (NT) people do. A safe place is one where the person is safe not just from physical harm, but from emotional harm as well. A safe place is somewhat different for children and adults.

For many LD people, the world is harsh. People can be intentionally cruel, they can also be unintentionally cruel. The former would be when a person is teased or bullied (either in person or via the net; either physically or emotionally). The latter occurs when people bring to mind the problems the person is having. Both can occur in other situations as well. A safe place is free from these dangers.

More than this, though, for many disabled people the world is hard. In fact, that is almost the definition of a disability: A disabled person (LD or physical disability) is unable to do easily what normal people can do easily. He or she may be unable to do it at all; or it may simply require more effort. Both are exhausting, emotionally. A safe place is one where this hardness is minimized, as well.

The exact nature of safety will vary from person to person as well; for a blind person, safety would perhaps concentrate on the physical nature of the space, and the sameness of the placement of physical objects. If a blind person knows exactly where things are, then he or she can navigate that space more comfortably and with less effort, and with much less risk of tripping, banging or breaking. For some LD people, safety will involve a lack of noise. For others, it will involve minimal visual distractions. But for all, it will involve emotional safety.

What can a safe place be?

For some, it can be home. For a child, if the parents set up the home so that it is safe, and are able to be emotionally safe for their child, then the home can be a safe place. But this requires a special set of abilities and efforts on the part of the parents. If there are other children in the family, that can make it harder, as parents have to devote time to all their children (and to themselves, as well!). No parents are superhuman; and some are, themselves, troubled with issues that make it hard for them to provide safety to others.

Adults can sometimes set up their own homes as safe places.

If the entire home cannot be made safe, it may be possible to make one portion of it a safe place.

However, some parents may be unable, for various reasons, to make any part of the home really safe. In this case, it may be necessary to find some alternative place. This can take a variety of forms. It could be a therapist’s office; it could be a relative’s home, or the home of a close friend of the family, or of the child. There are lots of possibilities.

But without a safe place, the person must be constantly on guard against all the many dangers of the world. That’s a horrible way to grow up and a horrible way to live; it stultifies and damages and prevents growth.

Updated
paypal email is jimreyn2004@yahoo.com

I'm astounded by the support from my Kos family. It's really nice to know y'all have my back and are friends.
Thank all of you from the bottom of my heart.
I'm going with my wife to the hospital now. i'll keep you updated when I get back. it may be a while. Thanks everybody.
jim

Update #2
We're back from the hospital. Good news and some iffy news. they gave her some high powered antibiotics and breathing treatments. They got her fever down (102.8) and she is feeling much better. They found some spots on her lungs and they want to schedule a CAT scan for next week. They are not sure what they are and say they could be from the pneumonia, or..... I'm thinking good thoughts and hope they'll go away before next weeks scan.

Now comes the best part of this diary for me, getting to thank all of you for being the most wonderful family in the world. I've been reading the comments and crying since I came home. My wife didn't feel like reading so I read the comments to her, one by one. Then we were both crying. Y'all are something else.

How does a man who has worked hard all of his life, played by the rules, and still come up a day late and a dollar short thank friends like you.

I've never written a diary. I thought long and hard all night long as to whether I should ask for help from my friends. Maybe I was too damn proud, in a way, to resort  to what was almost begging friends for help. I was so desperate, so down that I just told myself to write the damn diary and hope my friends understood.

 Boy, did they ever. The response overwhelmed me. I was crying, trying to type, respond, say how much all of you mean to me and I nearly lost it.

Please remember if I missed thanking you for all you did for my wife and I today, I really love all of my friends and family on Daily Kos.

I was so overwhelmed today that I couldn't figure out how to update the diary and include the Paypal email.
So if you missed it, it's jimreyn2004@yahoo.com.
A special thanks to RhymesWithUrple for helping me throughout the day and offering great advise and tips.
Thank y'all. I love you.

My first diary and not what I expected my first to be.

I've been a member of this Kos family since 2004. I'm 63, my wife is 50. We are both getting minimal SSDI and right now she is desperately ill.

And yes -- Nurse Kelley really did say it, I promise, she's just unable to post a diary right this moment so she's letting me borrow her headline for an important cause.    :-)  So you all know what to do then right?? Nurse Kelley Sez Please Rec This Diary.

Updated with Paypal info: The email address is jimreyn2004@yahoo.com. For those of you who are able to help a bit financially (and no amount is too little -it all adds up) please go to Paypal and send to jimreyn2004@yahoo.com.

Please go read tip, rec and leave a comment in jimreyn's diary. But before you do, please rec this diary so we can get it seen by more people who may be able to do a little to help them out financially or just by offering a few words of encouragment and support.

So many are struggling right now - and if you are unable to contribute financially that is perfectly okay! But please leave a comment and give some moral support to let jimreyn and his wife know how much we care and that we're thinking about them

Sorry to repeat here, however, I sure would appreciate it if you would also take a moment to tip, rec and comment in jimreyn's diary.  Thanks everyone!!!!

KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic.  There are two parts to each diary.  First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.

I won't be taking off my Gay Writer hat and putting on my Disabled Writer hat this evening. Even if I could do it I wouldn't attempt it. I'm a person. I'm a writer. I'm an activist. I'm disabled. I'm gay. There is no part of my identity I'm not proud of. There is no part of my identity that anyone can minimize or take away from me in order to uncomplicate their perception of my story. I won't hide anything from anyone.

It's not just that people who are double minorities endure more stress than others. That's expected. It's a lot more complicated, because different identities require confronting different types of issues in different settings and still sometimes the two identities clash. A problem might come up that involves interplay between both of your identities, and you have to figure out - all on your own - how you're supposed to handle it.

Listening to Gabrielle Giffords speak today made me cry, and I'm sure I'm not the only one.  It also reminded me how horrible it is not to be able to speak coherently.  It's a nightmare to be trapped in your own head, but not be able to say the words that you're thinking.  You're reduced to the level of an animal - having to grunt and point, because by the time you remember the word that goes with the object you need, it'll be two days later.

I can relate. In 2006, I started having some strange symptoms that I couldn't pin down.  I had problems speaking.  Words would get confused between my brain and my tongue.  I would set out to say one word and end up saying another.  Sometimes while talking on the phone I would forget not only what I was about to say next, but what we were talking about, or even who I was talking to.  I also had problems with recognizing faces.

I started to go through the process of diagnosis in 2007.  More symptoms were cropping up.  Now I was having trouble coming up with the words I wanted.  I had a hard time stringing sentences together.  Even if I could come up with a sentence, I'd forget what I wanted to say halfway through.  When I managed to speak, it was slurred, and had no inflection.

Even typing was a struggle.  You'd think that at least I would be able to write down what I wanted to say.  But no - every time I typed a sentence, ti wulod ocme uto kile htis.  Our eye wood youse homonyms.  (It's funny how many homonyms there are!  I think I found all of them.)  So communicating even with written words became a real struggle.  

I was diagnosed with MS in 2007.  Here was the results of my 3T MRI, taken a year later:

There are a few scattered punctate areas of signal abnormality within the supratentorial white matter, located in a classic distribution for demyelinating disease.  The single most conspicuous focus is in the right frontal lobe in a classic periventricular distribution.  There is also some minor involvement of the corpus callosum.  There is an area of demyelination within the ventral aspect of the pons to the right of midline, and also a subtle lesion within the left side of the medulla.  There is also a minor demyelination within the right inferior portion of the middle cerebellar peduncle.

While I haven't been able to find any information on Gabrielle Giffords' exact injury, we do know that the bullet entered the back of her head at the cerebellum, and exited at the front, through the frontal lobe.  

The cerebellum helps us with our motor skills - it controls the muscles of the body, and allows us to walk and chew gum at the same time.  Damage to the cerebellum can result in ataxia (walking like you're drunk) and lack of control of the parts of your body connected to the affected area.  In Giffords' case, we know the left side of the cerebellum was affected, so part of her recovery process has included physical therapy to teach her brain how to access those muscles again.  It also appears that she's receiving speech therapy - to learn how to enunciate, and how to process language correctly.

There's nothing like having brain damage to point out how little we know about the brain.  The frontal lobe and its involvement in speech is well known.  What isn't well known is its effect on motivation, planning, social behavior, and other higher thought processes.   I know how much the lesion activity in my frontal lobe affected MY behavior.  I even managed to screw up Hamburger Helper.  I can't even begin to imagine the kinds of challenges that Gabrielle Giffords is facing.

But there's nothing more horrible than not being able to talk, or think clearly.  I spent three years - from 2007 until 2010 - in a fog.  The first year was very difficult.  I don't remember anything from that year, except that I had a really hard time communicating.  In 2008, I found I could put a sentence together with some hesitations.  If I used the wrong word, I wouldn't know it (except for the strange looks I would get.)  2009 was better in some ways, but I kept having a problem with 'moving on' from one subject to another.  Or I would hear and understand what somebody was saying, but for some reason I kept acting as if I hadn't heard it at all.  It wasn't until 2010 that I could really say that my thought processes were more 'normal.'  

I think right now I've recovered as much as I'm going to from my flare in 2007.  It's been five years.  I can speak a complete sentence, my typing is back to normal, and I can even make palak paneer without much trouble.  So my heart goes out to Gabrielle Giffords.  She has so much more damage to recover from than my little ol' lesions.  It may take her three years, or five, or even seven, before she feels 'normal' again.  But this time to recover is essential.  And I hope when she returns, she'll not only be able to talk up a storm, but kick some Arizona ass.

As loathe as I am to again make a post about myself rather then politics or the economy, I find myself in a situation that is unusual for me.

KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic.  There are two parts to each diary.  First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.

It's two fifty-four AM as I sit here in my bed typing furiously and anxiously, wide awake as ever. I have my coffee and nearly complete silence, and sleep is not a possibility tonight. Yes - I have coffee at nearly three in the morning.

But hear me out.

As it is with other Kossacks who have written similar diaries, it is hard to write this diary.  Not only is the current situation tough, but I feel that I have to go back a year to explain the whole situation.  And yet this doesn't seem as serious as the troubles some others have been having.  But I see no way to fix it.

As it so often is, it's a matter of money.  I need a car, and I have no money.

I believe in my husband. I know he is a great artist with tremendous talent. I do. I know that what he makes, no one else does.

I guess my mistake was in believing...what? That everyone else would see what he does the way I do?

Here. Take a look for yourself. I don't think what he made here is overpriced. http://www.etsy.com/... (Sorry, link won't post, DK hates me)

The cranky, liberal lady known as "Granny Doc" around these parts died peacefully at home about 5PM this afternoon EDT.  She had been in a coma since Tuesday.  She was generally reclusive, but enjoyed participation in this community a great deal (although she has been scarce for the last six months during her battle with cancer).  There will likely be no service.  No formal remembrances planned, expected or appreciated.

I wanted to share with the community that when I visited her over the holidays, she was especially proud of a quilt that some folks in these parts had made for her that had quotes from various diaries.  I don't know who was responsible, but that was classy and made her smile at a time when little else did.

Mom and I were not very close, but we did share a passion for trying to leave the world a better place than we found it.  I'm still working on that for myself, but if anything mom wrote made you smile or made you think, that is all she could have asked for and it would have made her happy (although she would have sworn to the grave that she didn't give a shit what you thought... that was mostly bluster).  She had a penchant for "embellishment" in her writing, but I can tell you that her passion was genuine.

The world of cranky little old ladies (she was really only 72) just got a little quieter this afternoon.  Hopefully some of you reading this will be inspired to step up and help fill the gap.

Regards,

LeftCenterLibertarian
(Son of Granny Doc a.k.a. Gail Marilyn Barnes - Upson)

KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic.  There are two parts to each diary.  First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.