Inclusion
so. its high school. My friends and I are sitting around at my house debating what to do that night it was a group of at least four people and probably more.
My best friend at the time came up with an idea, “Let’s go roller skating!”
I raised my hand and said rather sarcastically, “Hello, I can’t do that,” and she got this look and burst out laughing, “Oh my gosh, I forgot! I forgot you couldn’t do that!” They hadn’t made me invisible or forgotten I was there, they had simply forgotten my disability for a moment. we went off to do something I could do and I appreciated that very much.
my best friend of those days and I aren’t speaking anymore and that’s a good thing for me for reasons that have nothing to do with this post.but I want to give her credit for having a very involved idea and a very young age that disability is something to be included not excluded.
the only thing I feel bad about looking back to those days since I’m much much older now is this: Did my group of friends miss out on things they would have rather done that were more physically involving like sports or going hiking in a park because I couldn’t do those things? I wonder about that because I didn’t have the self will at the time to ask them did you ever get to do those other things the roller skating the hiking perhaps at a different day and time when I wasn’t around or I wasn’t interested so that you could go do them and not miss out. I hope so. Because during those days, everyone should get to do the things they want to do.
Sights and sounds
Well first, it was 1963 or 4 and I was needing to stand up. Our 1960’s era black and white Magnavox console obliged. It didn’t look exactly like this, but close enough…a long box with wooden exterior and components inside, stereo receiver for music, or home Browns games, turntable for the occasional LP and a large black and white TV screen in the middle. It started out as assistive tech…I’d rather stand with it, sometimes, than my canes….then the sitting down in front (too close) to be scared to death by “The Outer Limits” or laugh my head off at “Bewitched” or “Batman”
The TV tuner eventually became something that needed a lot of babying, inching to the correct place to land the channel, but just a shade too far and you’d have to restart the process. I remember that my father became too impatient to take the time to cajole the machine into changing channels properly, and he’d ask me to work with it. Apparently I had “the gift” with that particular piece of machinery. If they wanted some music, my parents would send Nat King Cole, or Henry Mancini, and later the Beatles and Simon and Garfunkel through the house.
After our first color TV arrived in 1972 that console was demoted to my long empty bedroom closet, so I’d have a TV to watch or at least a turntable to listen to.
The television lasted until at least 1974, and possibly later…I remember watching cartoons in black and white in the 1970’s on that screen.
The turntable portion lasted considerably longer, til the 1980’s because I remember my boyfriend listening to movie soundtrack albums on it in 1985 and 1986 (It had been moved again to the guest bedroom when there was no longer any room in a teenage girls closet for clothes….)
One Christmas in the late 70’s we were spending the holiday at an uncle’s home…and one card held particular interest….because an elegant stereo system was waiting at home…speakers that came to the knees, a blue lit stereo receiver, and a turntable with a sturdy clear cover. It looked something like this . I listened hard to music from that system through the rest of high school, college and about half my marriage, reluctantly giving it up for something more compact in 1991.
Why did I write about it? Because in these days when you don’t need to store your music, television or movies in a three dimensional way sometimes I miss the part when you had to assign space in your house to three dimensional entertainment players that made you smile, and couldn’t possibly give you carpal tunnel.
The increase in uncertainty
Ever since my time with lymphedema began, there have been some nagging uncertainties that recently got more nagging. There have also been some positive developments…rather geeky cool velcro leggings custom measured and able to be put on by anybody without any fainting couches, pearl clutching, frantic denials or suggestions of placing me in a skilled nursing facility.
The only problem with these leggings is that they are not inexpensive and not covered by Medicaid…
I have been uncharacteristically quiet about the following, done more research and gotten some quiet off the record answers that don’t make me happy in one sense…but give me some relief in the other sense because in any medical situation….I just want the effing facts. Right here, right now, right away. Not so I can deny them or act like I can change them, but so I can know how to work through them.
For the last six months because of fear of being sued, or really not knowing, no one has been able to tell me the effect of a rather uniquely unfortunate situation on how this is going to progress.
A lot of folk with lymphedema got it due to breast cancer…a cancer that tangetially got a hold of a lymph node and attacked it…and so ten or so years later the system is weakened, lymphatic fluid is blocked and lymphedema shows up.
When I had Hodgkin’s lymphoma, the last cat scan before chemo showed sixty (count em’ ) sixty nodes as being affected by the cancer. I don’t know what the chemo did to the nodes themselves…thankfully it knocked out the cancer.
When I got the lymphedema, it was explained to me that it is incurable. Treatment can manage it, limit the open skin or infection that can come with it.
If no other causes intervene though, the endgame is congestive heart failure. That’s not a maybe. I do not have congestive heart failure at this time.
So…I asked, um, what does that mean
“You could have two years…you could have twenty.”
Inside my head, I investigated the two colliding facts that seemed to be running around in it taking up a lot of space. One, my lymph notes were *already* beaten up twenty years ago. Not one or two, but many of them. Two, this is a clear signal that my lymphatic system is working poorly. The conclusion I’ve drawn, that I’ve shared with a few medical people, is that I’m unfortunately on the shorter end of that timeline. None of the ones actually responsible for my care will commit to a yes or no answer on this, for fear of being sued, or fear of being right or wrong….but there are some that became good friends during the very early going of this in rehab while I was still in the hospital.
Everyone who knows me knows that I have this unfortunate habit of standing on the last nerve of the worst case scenario…
but these friends of mine, (not anyone currently treating me for anything) when I gave them my “I’m probably on the shorter end of that timeline,” scenario, have looked me straight in the eye and said: “You’re smart.”
So, that’s annoying, this reshuffling about how is my life going to go…
And, there is a new paradigm about, if any of the current folk responsible for looking at my legs see any atypical swelling, anything that looks different fromwhat is ‘normal’ for them now. then it’s “call the doc right away, this could be an infection, go to see him or go to the er…”
Don’t be doing anything *important* because you might have to drop everything if there’s a two centimeter change in the size of your legs…then it’s all earnest medical testing and sudden alteration of whatever you might have planned.
I’m trying to normalize my relationship with food (and eliminate as much salt as is humanly possible) and there are many days I am not sucessful, in part because I’m so completely freaked out about this.
But, unusually for me (*very* unsually) I don’t like talking about this out in the world.
Because it wastes any good times I have during the day.
Obviously that’s time that cannot afford to be wasted.
This is why I need everyone in my life, as I have asked before….to please handle their own freaking *lives* and let me manage this in relative peace, so that when you visit or call I can (at least mentally) mostly be the person you remember, not let the Scary Lymphedema Stuff out of it’s prescribed area of my life, and we can have a good time.
Thank you,
The Management.
Back to school.
There’s a discussion going on over at a friends Facebook page, and I thought I’d expand on it a bit. Being a lapsed academic, discussion of school always makes me nostalgic.
If you’re part of some family that’s lived in the same area/town…for at least a couple of generations, or sent generations of students to the same college…there’s this guilt or sainthood by association problem.
My biological parents married quite young (nineteen and twenty years old respectively) and they had grown up in a particular suburb. Five years later they bought a home in the same suburb.
After I did some much needed time in gimp school I was mainstreamed when I was ten-about-to-be-eleven.
That meant that when I got to high school there were actually three teachers teaching there who had been teaching when my parents were students at that high school.
Only one actually taught both me and my mother.
I had been warned repeatedly about Mr. Hill by my mother. That I would be working my *** off. That his stuff was challenging.
So, the first day of English Composition. Silver haired, decently dressed (a feat for any of my high school teachers) sharp eyed and confident, and a “keep up,” delivery….
He went down the roll. Stopped at my name. Looked at me hard.
“So you are Susan Donaldson’s daughter. (beat) “I’ll be expecting great things from you.”
(Gulp.)
I was quite intimidated by that, and thus didn’t really hit my stride with him until the following year in an English Literature class.
Mr. Zappa [no lie] had never taught either of my parents, but he had been there when they were. He still had the 1950’s butch haircut that my father had long ago let grow out. He was on cruise control with his lectures, but not spitting them out by rote. They were lively and interesting…he was one of the reasons I meant to become an historian. He always began with a notation of where we had left off the previous day…a kind of mental neatness, precision.
The teachers above never phoned it in. They didn’t show up chemically altered. They appeared scrupulously fair in their discipline. They knew the importance of getting something valuable into our skulls and making it stick.
Mr. Eich was a physics teacher that I never had. But there is a family story about how between my mother and my aunt one got an A from him and one got a B…. It was still being discussed *fifty years* later by some family members.
This is why I get peeved when I hear TV wankers dissing teachers. I had some of the most amazing teachers around….and they had nowhere near the stresses of today’s zero-tolerance-for-everything, metal detectors in the schools situations.
Teachers have some of the toughest work in the world to do, and aren’t paid relative to it’s difficulty, some might even say hazard.
That’s not to say I haven’t suffered under lackadaisical teaching, or hung over teaching, or just what-the-heck-was-that teaching. But I have to dig harder to remember those, and the ones that matter to me today are the good ones. The ones that got through.
Here’s an apple for ’em.
Medicaid is no free ride
I hereby give permission, if anyone is discussing Medicaid with their conservative relatives and friends (Since the Supremes decision to make it optional brings it back into the news a bit) to use the following personal story to underscore the fact that 1. Medicaid is not “free” healthcare, and 2. Does not cover everything.
In Ohio, if you are on Medicaid, there is a portion of that called a “spenddown.”
You have to either incur your spenddown each month,(as in some vast hospital bill you could never hope to pay, in full) or pay your spenddown each month before benefits from Medicaid kick in.
Mine is 204.00. I can’t get by with just incurring that because I now need personal care inside my home So I pay 204.00 each month as my share of that care.
Neither Medicare nor Medicaid will cover lymphedema supplies. (I’m on both) Socks, compression stockings, velcro compression materials are an ongoing expense of about 50.00 every month.
Repairs and batteries for my powerchair are questioned because of an ambiguity in the Medicaid change (the creation of a bidding process on repairs to save $$$ at the beginning of 2011. Long story short, the company that made my chair can’t bill Medicaid to fix my chair, (“our bid wasn’t the lowest” ) and the ones that could bill them don’t want to repair the chair…”It’s custom, we don’t have to…”
But, I couldn’t live independently in the community without Medicaid. Because of Medicaid I have transportation to medical care…covered prescriptions are discounted, and I’m finally on some physical therapy to try to combat muscle atrophy/rigidity that happens to some sedentary folks with cerebral palsy as they age.
I’m listing all this out because it is concrete proof that Medicaid, the thing I have that keeps me out of some human warehouse at age 50, the thing I’m quite grateful to have, is not free.
Not by a long shot.
(It’s important to note, legislators, that this kind of help costs the state about half as much as warehousing me, which they were darn near ready to do in February…when I said, “Um no, I’m not going into a nursing home because only skilled staff can put on two bandages no matter how important this bandaging is to my lymphedema. Just no.” And eventually got some outpatient patchwork solutions going.
Medicaid Beneficiaries are not lazy.
Keeping my care going, making it to the appointments, making necessary lifestyle changes monitoring my lymphedema daily, carving time out to do home therapy…..etc, while trying to take care of a rather feisty little LexiTheMiniatureSchnauzer…
…Takes at leas as much mental effort as a part time job, and often a full time one.
The optional Medicaid expansion offered by the ACA will be a vital benefit to the lower income people it would serve…But it’s not some license to sit on the couch and order up expensive medical tests. It’s a flawed, nutty bureaucratic nightmare that nonetheless is better than going without.
And I’m sick to death of libertarian philosophies, being applied on the ground in such a way as to obscure and mischaracterize the necessity of these services.
I was quite encouraged watching Laurence O’Donnell and Howard Dean subbing on Morning Joe this am,discussing forces within the medical community that might just force governors who are presently ideologically opposed to the Medicaid expansion to go ahead and take the money in 2014.
Push back when you can…when they start ranting about socialism and entitlements.
Midlife And Treachery 
