Dear Hope:

October 2, 2012 at 11:53 AM (Uncategorized) (, , , )

If I could send a letter to Hope Holcomb of Canton Ohio, the ten year old with cerebral palsy being mocked by a neighbor boy and his father…

News Report link here.

It might go like this:

Dear Hope

My name’s Jean and I’ve got CP too.

I’m so sorry that you are going through this.

Sometimes ignoring can help, and sometimes it can’t.  My parents told me to ignore the people that made fun of me because I had cerebral palsy.  I tried, but it did not work.

The thing is, your parents are fighting for you.  For that small thing of a quiet ride on a bus to school.   They love you.

You’re going to do a lot of really wonderful stuff as you grow up.  You’re going to learn new things, and have fun, and meet new people.  And you’ll have more and more friends that realize you’re a fun enthusiastic kid, and that the crutches don’t matter.  You are going to leave these bullies in the dust, kid.  It’s going to be ok.

Bullies like that, people like that…Since I’m 50 ( an old lady compared to you,)  I can tell you life answers them.

For every nasty thing they do or say, they don’t have as good a time in life.

They’ll be unhappy someday too…

I don’t even think about the boys that bullied me about my cerebral palsy on the bus much anymore.  I don’t remember their names and I barely remember their faces.

It’s like they don’t exist anymore.

Sometime soon…all of this will get better.

‘Till then, you just keep right on walking.  Forward.  Ahead.  Away from them.

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Some days, I’m just a troglodyte…

May 9, 2012 at 5:27 PM (Uncategorized) (, , , )

A caveperson refusing to embrace the grownup idea of what’s a good thing, and instead pout because it came along too late for me.

My grown side is really excited about what cord blood might mean for children with cerebral palsy….the potential for building or rebuilding some of the less than optimal parts of the way we talk to our muscles.

But then I just get irritated.  I’m such a mental two year old sometimes.

“Could’ve helped me.  Why didn’t you bright lights of medical marvels come up with this years back?”  It has resonances of when the first HIV cocktail medicines became available two years too late for my spouse.

It’s why the old “cure” paradigm is so useless for a fulfilling life.  You don’t sit by the phone and pine for this stuff, especially when you’re way past twenty one.

If it shows up it shows up, use it then and be pleased about it.  And if it doesn’t, or it shows up late…you deal with what you’ve got.

Whaaaah.  Bitch complain.   But then I just shrug and say to myself…”Well, I’m doing rehab….I’m seeing some small improvements.  I’m doing what I can do.

I think, in this case it’s part of the broader irritation with having turned fifty this past year…

more and more things just aren’t going to happen.

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How to Label this one…or Immune System Follies

February 25, 2012 at 10:59 AM (Uncategorized) (, , , , , , , )

In addition to my cerebral Palsy, Asthma, Carpal Tunnel, Depression…Theres this new thing, lymphadema I don’t know. But I’ve received confirmation from a medical source I trust that my case of lymphedema has a bit of a different twist than others.

It’s an illness common to cancer survivors…breast cancer patients are the most common recipients of this sort of consolation prize.

But in my case, my original cancer was cancer of the lymph nodes. Because my lymphatic system was weakened in the first place, it makes the lymphedema more dangerous to me in particular.
While the cancer has not returned, per a medical professional I trust, this is a sign that the whole lymphatic system is weakening. Lymphadema is not curable, and will not go away.

With the agressive therapy, I can hold the line on this for a time, against progression to congestive heart failure. My heart is in good shape at this time.

(One really annoying thing about the therapy. ) in addition to all the time working physically I *have* to lie in bed and keep my legs up for at least two hours during the day. *That’s* not going to help any weight loss goal 😦

One thing the docs don’t know is how much or how little time it can be held off. Could be twenty or thirty years. Could be six months.

One thing the docs do know: Barring some other intervening illness or injury…eventually my lymphatic system will shut down, and that…will be my endgame.

So, betwixtandbetween. Not directly terminal…but it feels pretty odd to have a likely ending scenario mapped out already.

But dumber still. Someone said I ought to be pissed at my oncologist.

WTF? The guy gave me *twenty years* and however many more i’ve got!

I’m not going to ‘get mad’ at him.

Sure, 85 % of me is peeved at The Universe for handing me this.

(14% shrugs like a Frenchman and says c’est la vie. The remaining 1% says it’s been a damn long wait to see my husband, and if that’s how it’s going to roll, well then that’s it.)

And it’s so darn nebulous, I forget about it sometimes. When I do think of it I don’t know how to feel about it from day to day.

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Grumpy and self-involved, or On being judged.

February 17, 2012 at 11:58 AM (Uncategorized) (, , , , , , )

This is just a short, peeved note.
Ok, people deciding that I should be able to do xyz with this new rather more dangerous impairment that I just got? (lymphedema) Go jump. Or go tack yourselves to a wall. Take a long walk…A really long walk.

This is the truly whiny part, and I admit it.

I really do believe that anyone else in the developed world who had been through my list of obstacles in order from the moment I got born…
Might very well be in an institution where they treat mental illness weaving baskets by now.

I’m not. (At least not yet).
So I am, in fact, ahead of the game.
It may look like quitting from the outside.
It isn’t.

Quitting would be not doing anything the docs tell me.
I’m not doing that.

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Why? Because he could, that’s why.

November 4, 2011 at 1:13 PM (Uncategorized) (, , )

Regarding Judge Adams’ beating his daughter with cerebral palsy with a belt because she downloaded forbidden music….

for any newer readers to this blog,  my bona fides on this is that I’m a woman with cerebral palsy myself.

I had to take a day to respond to this.  You’re still not getting all of it.

My feelings for what should happen to this judge are NSFW and not safe for the entire internet.

And it’s not just the beating, which frankly I cannot watch.  It’s a trigger.

Good God!  The slant of the statement by the judges attorney…

“Well, the reason she released it NOW is,” detailing her anger about her father threatening to cut off support or threatening to take the keys to her Mercedes….

I don’t give a shit *why* she released it. *Why* is less than nothing.  He admits this was punishment he believed was his perogative as her father.

While I always fight for us, people with disabilities, to be represented as people first and not as fragile little creatures to be taken care of…

There is a baseline of obligation that you have to a physically vulnerable child. (meaning, all children.)

All children are weaker than adults.

Vulnerable to them.

And as children and adults with disabilities know…we (as a group)  seem to have an extra sign on our backs that lights up when predators are near.

E ** A ** S ** Y P ** R ** E *Y

This creature Adams didn’t need a reason to hit his daughter.  He could, and so he did. That’s it.

My father did spank me once when I was three, for smushing french fries under the car seat.   Spanking was accepted at the time, but the way he did it (grabbing me by my ankles,  holding me by my feet, spanking me and sitting me back down.) caused my Mom to let him have it.   She made it clear that this was a no corporal punishment household.  (I did get paddled at school three years later after  a day when I had been a beastly little brat. ) I didn’t consider either incident relating to me as abuse, per se.

So, fast forward to the near-miss, that this Adams’ incident resonates with for me.  I’m 17.  It’s summertime, 1979.

The single time my father nearly did raise a hand to me.

Mom was out of town on a job conference.

She had asked me to clean our bathroom.  Commode, sink, tub, and floor.

My memory is that I did a kinda half assery job at it, but that I did work on all parts requested.

He came home drunk, his natural state.

Wen’t into the restroom and the flood of cursing and name calling sent in my direction was unusual, even for him….I won’t reproduce it here.  He came out to the back room, the one with the wall full of windows in it.

“You little **it!  I ought to beat you up!”

And, as has been the case for decades now, when the chips were down, I did something insanely stupid.

I straightened  up,  cricked my neck to make sure I could at my father’s face up there eight inches taller than me… and yelled back:

“I’d like to see you try!

Come on!

Hit me!

The minute you’re  done,  I’m calling the cops!  Or a lawyer!”

His face got all funny.  He backed away,  put his head in his hands and began weeping.

I walked to my room and shut the door.

The only reason it went that way instead of Judge Adams way, is that my father was not a predator.  He was not a sadist.   The alcohol had turned him into an emotional abuser, but there was still enough of the original guy left over that he couldn’t physically hurt a kid.

I don’t see Judge Adams as a human being.  He’s like some cold souless alien from a ’50’s sci fi film.

In keeping with that characterization, I submit that creatures like Adams   deserve only one thing.  A cold slimy black steel barred cage in the bottom of a deep deep hole.

And just a warning:  Don’t  *beat* on any of my tribe where I can see it or there will be consequences.

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