When it’s a good day, I don’t think “I’ve run out of positive and will just hide in the corner,” Instead I say “New paradigm ok, how to work with it, within it, not against it.”
And new paradigm with me almost always seemed to lead to diagnosis of a previously unknown long standing impairment or illness. I had five that were previously listed. Now one has been reclassifield and one is brand new.
So, like always, a personal history digression. Excuse it, but it’s one of these blog posts I have to get down, if only to get the chronology recorded for the next disability review.
“How could you possibly lose that? You just put it down! You can’t tell me you don’t know where it is? My sudden short circuits about where things are remains legendary. (That, and other characteristics of my professional and academic life have recently (2009) been brought out and presented to me as adult ADD. I have been dealing with that since I was five years old. Still diagramming how and whether to medicate.
And, it hit me at a pivotal point in my life, with very life changing and regretful results.
A masters thesis in history was beginning to take hold of my brain…I’d finished two years of TA’ing. I had an outline. I had notes (pre computer on 3 x5 index cards) of the murky first draft that I wanted to do. I remember (and memory can play tricks of course) I remember putting a backpack full of notes and my husband’s Bible under my desk in the teacher’s assistance room.
When I went back, the backpack was gone. I searched my apartment, I had my mom search her home, I searched our car and my mother in law’s house.
Those notes the bible, the backpack itself… were never found, and I bailed. I was irrational about continuing at that point…to start from the beginning seemed impossible. It had which sources I would use, the outline etc.
So I did not become a history professor. In, part…because my brain short-circuited. Nothing was in there worth stealing, maybe I left them there earlier than I thought and they were taken as a “lost and found’ thing. I have no thought that anyone stole them. That way lies paranoia.
And, the effects of an unknown aggravator of an existing impairment.
1983. Fell down a flight of stairs and probably damaged something internal l which I now believe was my gall bladder Have had specific constant back pain in the tissues ever since which has not been investigated properly ’cause, you know, I’m fat, and there was some diagnostics my insurance wouldn’t allow. In 1995 I was having a massage (ah, the 90’s. Money!) and after I had signed a waiver, they pressed too hard on that quadrant of my back and I felt something go…but as I said no investigation…
2009. When my gall bladder emergency surgery was done, the surgeon described it as “infected and crushed.” So, backtracking it makes sense. I still have pain, so I figure more may have been damaged, by these original injuries so I’ll find out in the next ten years what got damaged. Having an imperfect gall bladder or none at all) is often the cause of really ramped up gut problems.
1996 “You may have low thyroid, but not enough to medicate.” 2008 “You have low thyroid and it could have been responsible for up to one-third of your weight gains.” Damn. Just Damn.
Now on cheap medicine for that.
Again, not for sympathy points, but just for documentation.
The list of impairments now stands at.
Born with ataxic cerebral palsy.
Existing gut trouble aggravated by bile. (The bile problem may be gradually lessening due to a specific med for that part.)
Tendon deformity, arrival 2008
Adult (and probably childhood) ADD.
And, I am very angry that I lived with some of these not knowing they were happening.
Some of the new stuff wasn’t known about till the 1990’s or so like the ADD and I get that.
But these others?
This one will be controversial, I’m sure. And mean, and not showing either of the female participants in their best light. But…
Why did it matter to me so much? It did. And not just on the basic relationship level. Always, always, why did I feel I had so much to prove among the able regarding my personal life, my romantic relationship? A lot of folk at the time advised me I was putting too much emphasis on it.
I was. I’m such a damn cavewoman about these things. It actually became something of a game sometimes, an old school catfight if an “other woman,’ showed up. But what I wonder is why I was…
A bit of a prologue is needed, from the time before I was really ‘dating’ my future spouse.
1980 or so.
He met her at a church function. She was completely able-bodied, and his disability was fairly invisible. At that time, or shortly thereafter they began to date and it got serious rather quickly. One of those couples that, when they are together, make it seem as though they are the only two people in a room. (My late husband, when he emotionally committed, did so fast.) At some point down the line a ring was exchanged and they got engaged. She was either already in, or joined the military shortly thereafter. He had begged his brother-in-law to drive him to her place of deployment to say farewell after a leave, and the brother-in-law, while grousing a bit, did so.
After coming home, he realized she had left a gym bag of hers in his closet.
I don’t know how he came to read her letters…whether he was then in the habit of going through other people;s things routinely (Something I didn’t permit in our home. Each of us had to ask permission before handling the other’s stuff), or when he picked it up, was the bag open etc.
Doesn’t matter. What did matter at the time was what he found.
It wasn’t just the shock of realizing she was also very seriously involved with someone else, someone near the deployment she was going back to.
There were particular paragraphs that noted with some scorn, that she had some guy back in the States who thought she was in love with him…very sarcastic in tone, he said, as if the two of them were laughing, via letter, about it. I often wonder, if unconsciously, she left it there on purpose, to be rid of him.
His mother, a very religious lady described his reaction to this as ‘possessed.’ According to him, he wept. Shouted. Sank into a serious depression. He did not leave the house for days. Truly devastated. And, appropriate to be so overset after such a betrayal.
When she returned from that deployment, still well before I knew him, he advised that there was some trouble getting the ring back, I don’t remember now if he did or didn’t…but there was some sort of highbrow kitchen accessory still in a box in his mother’s kitchen in 1985, and she often lamented about what the heck to do with it, since neither he nor she gave a darn about it. (A child of the Depression though, she just couldn’t bring herself to throw anything away.)
We were dating by that time, and he was working in one of those seasonal holiday shops in the nearest mall. I was visiting my dad and my dad’s latest girlfriend. She happened to live in the same suburb as my guy did.
As my cousin told it to me, here’s what went down.
The ex girlfriend found out where he was working through some mutual friends, and showed up, all interested in getting interesting, very hey, baby what’s up. As if the weird painful breakup had never occurred. My cousin and her husband happened to be there, visiting. My husband excused himself from the kiosk for a moment and proceeded to flee to a restroom and get physically sick…from just seeing her.
My cousin politely but pointedly mentioned that he was in a relationship with me.
She did not know me, and apparently did not care, she intended to go after him anyway.
He returned fairly quickly, advised her he wanted no part of her. She apparently advised him that she intended to show up in church that Sunday in the company of these mutual friends…He finished out his shift, shaky on his feet. He called my dad’s condo, and I got on the phone.
“Hey I know we were supposed to go out to dinner and a movie, but can you just come over?” He sounded so shook up, I wondered what was going on but said, sure.
We had the house to ourselves, and got comfortable and he calmed down and explained.
He needed hugs and reassurance that night, and got them. He wanted to make sure I was with him at church, because he advised he didn’t know if he could handle it.
I wanted to make d@mn sure I was at church too, because gossip ruled in that place, and also because I wanted to make certain she knew where I stood, and what I was willing to do to handle that archaic “hold on to my man,” thing. (It just irks me to no end that I thought of it in those terms, but I did, and there’s no sugarcoating it.)
I got so insecure, inside my head that weekend. If he really did want her, how could I compete with that? Not just able, but military…I was so sad. I thought, “Well, it’s been good, but here’s the able chick sweeping in. He’s shook now, but she’ll pester and pester and she’s probably better looking, and they have a history, and she can do more things, and doesn’t limp around and doesn’t have a lazy eye like I do…” All of the old, “Not good enough,” stuff came up.
After all I have three great male friends, all because, couldn’t get them interested romantically due to, at least in part, my disabilities…they let me down gently, but they did, and left me feeling inadequate (although they are friends to this day, and I’m now so pleased with that.)
I never actually saw her face till the end of service. By prearrangement we were in the last pew.
She walked in, in uniform, back straight, and didn’t even turn to look at anyone. Brown curly hair past the shoulder. A sturdy person. She sat in the front pew with the folk she was staying with. I had my best dress on, something that I fit into for only about two weeks. A periwinkle blue dress with an old-fashioned bodice top.
He had a death grip on my hand and sat through most of the service with head bowed.
He often made scenes and I could see he was mightily suppressing his urge to do so.
The service ended. “Here we go,” I thought. Here’s where I have to prove to her in about thirty seconds that she never even had the wisp of a chance with him.” Me, the gimp, facing down a military person. She turned. And happened to look straight at me. My impairment was much less obvious standing in a pew from that distance. I stared her down like murder. Her brows raised.
And then I smiled. Wolfish and obvious. the look up and down, slow starting, “Oh, you don’t impress me at all,” smile.
She looked for a moment like she thought of making an introduction…but when she left the church she simply rapidly walked past on the outside, my side of the pew, without another glance or word.
We heard one last thing about her, that she had later married and had a little girl.
Objectively I thank her for her military service, as I do all vets I meet. But that’s where it ends.
Why did I *need* to win that battle so much? I still don’t know. But I won it.
It started when I was watching news and eating my oatmeal.at 7:00 am Mountain Time. I was frozen, like everyone. I cried, even though I only had one person, a cousin, living in New York. I called her parents. They advised she was fine.
(I miss Aaron Brown. He hung in there as all the newsers tried to do, to make sense of the sensless.)
Out here in the Rockies or maybe anywhere else that wasn’t New York, or DC or Shanksvile unless you had friends co-workers or family in NYC, maybe our job was just to witness. So that later on, when we are all old, we’re going to be able to tell people that have only seen it as a historical event what we were feeling.
In New York, the most agonizing witness, surely. But the idea I’m trying to put across is that you in New York and the other places hit, were forced to be participants in a way the rest of us (with the above exceptions) were not.
So, I was driven to work as per usual by my roomate who worked in the same building. When I came up the elevator, the normally peaceful, calm, cheerful, professional best boss I ever had was in a quiet but obvious rage. Thankfully, his anger cooled quickly and he was all business.
I had a cubicle/call center job. (only kind of work I could do). He gathered us all together and said,
“This is going to be a difficult day for us. Old people who are alone are going to call us. Just to have someone to talk to. So, I ask you, no matter how frightening this gets, to make a special effort to put across calm today. In addition, some of the customer service folk who work for one of our vendors will be unsettled today too, because they have many many co-workers in one of the buildings just across from the World Trade Center. We’ll have the TV’s on in the cafeteria, but I ask that you stay on the phones, and watch if you want to at lunches or breaks.
And he knew what he was talking about, because in between regular customers, that is exactly what happened. There was hushed speculation in between calls about why, and who did it, did they get out, jesus did you see the jumping, and my god our world is changed…but on the phones we projected steady. Calm. Competent. And compassionate if we got someone who had people in NYC.
They let us out early at 3:00 Mountain, to be with friends and family.
That evening it was Peter Jennings on my tube. He was trying, but he projected more emotion than Brown if I remember correctly. I miss him too.
And I cried some more, seeing what was left.
A story like all of us at a bit of a remove from what so many had to deal with close up, I guess.
getting de-personed for being a woman, a gimp, or fat, or any and all combinations thereof was bad enough….but I’ve noticed as the political climate has gotten more and more poisonously divisive.
I’m now getting ‘mentally deleted’ once people know I’m one of those “liberals.’
Disagreement on issues? Fine, lets. But don’t decide I’m not a person if you disagree with me.
And, one on one, I’ve never, never lost sight of the fact that the person I’m discoursing with is a person…because many of my really really close family profoundly disagree with me politically. If I do move back to Ohio, I’m realizing that I’m actually going to have to censor myself more severely there than here. (Denver has a boatload of conservatives, but an equal amount of liberals, so you’re less likely to get cornered and shouted at at a restaurant or grocery, or public place etc etc.)
I wonder if disability intersects with this because anecdotally, the able feel the right to get all up in our business about everything *because we”re disabled. *
For example questions I’ve been asked/statements made on the street by strangers who would never dare ask an able bodied person these things….
“Can you have sex?'” (Um, mind your own business and sure as hell not with you.)
An undocumented cab driver, after he’s picked me up once. “Will you marry me? Then I could become American! (Big smile on their face.)” (I, and they were lucky that I was *extremely* sour on the idea of marriage at the time.)
“If you didn’t eat so much, you’d lose weight!” did you know that?” (Really? I do have a mirror, I see it every day, and you’re obviously not the sharpest knife in the drawer.)
“The only reason *you’re” liberal is that you are in a wheelchair. If you were walking you’d understand Beck quick enough!” [WTF! Increased mobility means I’d automatically become the devils disciple? Who knew?]
“And you probably love terrorists too! You loser ***ch!” (No, my stance on terrorists is what makes me a rather bloodthirsty liberal. You heard it here first. Osama’s head on a pike is fine by me.)
“You hate capitalism because you’d rather sit at home!”
(No. The reasons I distrust corporate management of my world are many and varied and I’ve already written about them here, and they are more personal than political, but they are both.
Guess I’d better resign myself to either ‘vanishing,’ or getting a lot more argumentative blowback once I’m in the Buckeye State.
Here we go…I’m griping about the stuff that’s supposed to help me…
I have both impairment and illness. Mobility impairment that keeps me from walking, and other illnesses that require medicine…and a syndrome that requires liquid stuff that is just foul to drink.
First, take the morning medicines. Then wait one hour. Then, drink the liquid and wait a half hour. Then I can eat.
There I need one supplement to digest dairy and another to digest legumes. Then two and a half hours after the cycle begins I take midday calcium. (it interferes with the morning meds)
Then, it’s time to drink the stuff, wait one half hour and have lunch.
Three hours from then, protein to drink, and the legume supplement
Three more hours and time to drink the foul liquid again, which is giving me major heartburn by then, wait one half hour and have dinner.
Two last meds at night that must be taken early, one of which, if taken later it is difficult to rouse timely the next day…
And frankly, it’s tough to remember each and every one, so every day I usually have an “Oh, sh!t I forgot!” [medicine] moment. I have one of those pill things, but that still takes loading each time correctly. Oh, and then there’s the asthma meds…echinacea and some others and the one condition I’m not allowed to medicate, because it conflicts with the others…
They all help, its just a lot to do…sometimes it makes me glad I’m on disability. I can’t imagine keeping that schedule of meds up on a workday.
Grouse. B!tch complain. Then there’s the excercise DVD’s that have sitting aerobic and strength training in them.
But I l get irritated at people who have conditions that could be alleviated, either with Western or alternative medicine, or a combination and refuse to take them, or at least try them.
I recognize four meds among these are just vital. Vital to me having what approaches a decent quality of life…
Do there have to be so many?