I have to handle this…
better than my father did.
He stayed at the very very bottom of the economic ladder for several years, (due to alcoholism)
An illustration of how far down he got:
He had just died about a month prior, and I’m sitting in my office cubicle, minding my own business…
And the phone rings…it’s the City of Cleveland cops. The conversation went something like this, on a work phone, on company time…but I was never called on the carpet for it.
“We have warrants for your father’s arrest. Where can we reach him….” Heavy on the intimidating tone.
“He’s dead,” I said rather calmly, figuring that would be the end of it…
…it wasn’t.
“That’s what they all say, lady. Look, Beachwood and Kirtland have warrants for drunk and disorderly too, and they can’t reach him either. You’re his daughter. You *have* to know where he is.”
Well, I’m good at arrogance, and intimidating tone too. So I used ‘em. But I was also angry and couldn’t help raising my voice, so the three other people with desks nearby couldn’t help but overhear, and I’m still sorry about that.
“I’m not deceiving you…”Officer,” He died in a halfway house on Detroit. October the 28th.”
“I don’t believe you, lady, with all due respect, you’re giving us the runaround and it could go badly for you.”
“There was an *autopsy done,* sir! I am at work now. Surely you have the number to the Cuyahoga county coroners office?”
Grumbling, and finally figuring I might be on the up and up,
“It’s not my job to prove that. If it’s true you have to get a copy of that autopsy and bring it here. I have a warrant.”
“Good God, I was one of the ones who cleaned up his mess while he was living, and I’ll be damned if I continue after he’s dead. Call the coroner, and if you have questions then, call me back at home! Not at my place of business! Are we clear?”
The officer said something non-committal and hung up. I never heard from cops again, not from the city or the five separate suburbs where drunk and disorderly charges had been brought.
The point is: No halfway houses. No homeless shelters. No matter what. I will not do that. I’ve got to do better than my father did. Because if I do, there will be a way out for me….
I find myself nearly at that same bottom for different reasons.
Distasteful things have to be done. Contacting charity orgs. Filing medical bankruptcy. A possible move back in to subsidized housing, as the roommate is less and less able to handle (most) of what could be handled if I had a roll in shower, again but that same opportunity for accommodation….means I’d have to live alone, something I’m not certain I could actually do.
Living with family has been suggested, but the family that was suggested is not able, in any real sense of the word to handle my presence in the house, either physically or emotionally.
Trying to see the way up, the way out that will begin at some point….and trying to counsel friends on job choice, on how to avoid abuse and neglect by someone who has shown that behavior before…trying to stay useful.
It isn’t simple. Or easy.
Tabletop
I am ten or eleven. Into my first year of “mainstreaming,”
What a bullsh!t name that is.
From a leader of the pack, I was now relegated to the shoulder of the road, the “odd” one amidst the able children, who resented my brains, and in the same moment figured out my emotional vulnerability as the ‘odd one out’ and exploited it.
(For the record I scorned them plenty as well, if only internally.)
My former school had been completely integrated.
“You’ve seen a black person?” Sheer incredulity.
“Yeah.”
“What’re they like?”
Forcefully: “They’re just people!”
The refuge from being seen as a freak, or confronting their mean spirited games or their insular uninformed opinions about me or almost anyone else who ‘wasn’t like them’ was the library.
I had an odd way of reading….at home, I would kneel on the floor, with my legs folded under me in kind of a permanent quarter pushup, with my nearsighted eyes nearly hitting the book. I knew I was prettier without the glasses and so, scorned wearing them.
I think it was comfortable because it stretched out my back….it wasn’t much good for my feet though.
In the glorious library, home of all that was interesting, we had to sit in chairs and read.
One afternoon there was an empty table, and before I really knew what I was doing, I climbed up on that table, knelt, folded my legs under me and got lost in the first speculative fiction book I’d ever read, “A Wrinkle In Time.”
Shortly, authority figures arrived. I believe their initial intent was to simply force me off the table and into the chair, but they went at it carefully, like negotiators.
“Are you really comfortable up there?”
“Yep.”
“Woudn’t you rather sit in a chair?”
“Nope.”
Then, some Einstein of elementary education got a *camera* and took pictures of me for the library wall, one showing my backside and the bottoms of my shoes and the other showing my face, looking like some refuge from the woods because my early 70’s shag was overgrown and hanging well past my turtleneck, with bangs that were truly affecting my ability to see.
They told me it was the last time I would be allowed to do that, but left me there for the rest of the reading period.
They sent my mother a copy of those pics, unfortunately. She loved them, and keeps them in the picture album she won’t give up.
Sign Post
There’s how others see you, and then, there’s how you see yourself.
I’m not speaking of physicality tonight…
But that inner gadfly that started quite early.
I see myself as the Kid With The Sign.
It has a wooden post, it has white backing, and the message has varied over the decades:
When I was really little, I didn’t need signs. The raised hand would do it, and eventually I would get to read aloud, assigned text or a book report, or sing…perhaps even a solo note or two.
When I was ten, I saw my first drunken rant, as my father vectored all over the house, screaming for ‘the gun’ he did not own, because he was going to kill that ***** his best friend. (He didn’t. Like all of his rants the chief exponent was alcohol breath and hot air.)
So mentally, in dialogue with my mother I would hold up a sign. This sign said, basically “I love Dad, but can we kick him out please? I can’t live in the same house with him anymore.”
So, I’m metaphorically dragging this sign around in my head, flashing it at Mom for *three years,* and then, she asked me:
“How would you feel if I divorced your father?”
“Would cartwheels across the kitchen floor convince you?” I answered out loud.
Still carried that metaphorical sign and flashed it with ever increasing frequency for three and a half more years, until he was removed from my living space at 17.
So I went to college, and the signs got briefer. “Guess what, I’m not cognitively impaired.” Flashed the intellect for a minute, and they obviously went…”Well! Ok, she’s not invisible and might very well be interesting. Let’s find out! And I made friends 
(Friends Only. Their signs of “I wouldn’t date a gimp for the entire contents of the US mint. “ were flashing in their heads quickly enough.)
Then the signs got serious.
I got married, and held up the “Condoms Are Not Optional, They Are Mandatory/ Do You Actually Have HIV?” “sign to the hemophilliac husband so many times I can’t count them…and he didn’t answer( whether through misinformation or denial is not completely certain ) for four years….
One year later my sign said, “You’re losing weight, too much too fast, something’s up.”
His said ” The Scale is Lying.”
He actually said that one out loud.
Then, I had my own separate sickness…Twelve months of
“Somethings Wrong !” “I’m sick, I’m sick take me to the doctor please, I’m sicker…take me to the doctor please….
His sign said, “You can’t possibly be sick. I’m the sick one here.”
My Hodgkins Lymphoma showed up.
Then I wished for real signs at the bank, the grocery checkout, at the theater.
“We Don’t Have Time Left. We’re Busy and We Have Doctor’s Appointments…Move Out of The Fcuking Way!”
After, I didn’t have signs…I was moving around in the dark looking for lighthouses….
And widowed, I washed up on the beach that is Denver.
Helped some folk, not others….
And have resolved to *stop* holding up signs.
Good friends have potentially life altering or even life threatening conditions. Or tortured relationships, or abusive partners or….I’ve spoken about these things one time each to my good friends. They are grownups. They can act to alter their trajectories, or not. Free Will is a great thing.
I’m Not Holding Up Any More Signs… (Except the one from the inner child that says, ‘I Want to go Home…I may be able to next year, I may not.)
I have to try and take care of what’s left of my inner self.
A member of the family.
No, I’m not related to him. He’s a big cheerful guy who is most comfortable in the outdoors on a boat, fishing or not, or even the occasional hunting trip.
He’s also a Star Wars geek, and a carpenter… and he still calls me ‘Cuzz.’
He was my cousin’s husband, the cousin that always felt like my sister, before she passed away after a seven year long fight against complications of diabetes, she ended up with both visual and mobility impairment…It was a long difficult time for both of them.
In late 1991 they came to our house for pizza. Black humor often takes center stage when you feel overwhelmed by the fight your body is fighting.
My cousin Tiffany said, “Hey, do you *believe* how many separate diseases are in this room?”
My late husband, never one to shirk at odd conversation said, laughing, “Let’s make a list! ” He said, “Hmm, I’ll start. Hemophilia and AIDS.”
I took the next round. “Cerebral Palsy, Asthma and Cancer…”
Tiffany was next…”Diabetes, sarcodosis, glaucoma, kidney failure…”
And her husband said, “Hey!…I feel kinda left out!”
We couldn’t stop laughing for ten minutes.
It’s very clear that we’ve kept the connection because somehow, I don’t know why, he has a small obligation somewhere in his head that we should keep in touch and that he should look out for me in an appropriately small way.
One of my most profound regrets is that I didn’t spend as much time with them as I think I should have when her illnesses accelerated. I could mealymouth around it, but the cold hard truth is: after just finishing myself and the spouse’s long nightmare with my cancer and his terminal illness in 1993, my selfish want was that I *never* had to see another loved one suffer up close, never again…and so out of pure selfishness and fear, I was never close enough for very long. I did rejoice with them both and visited for longer stretches after she had a kidney transplant that freed her from the extreme discomfort of dialysis.
Near the end in 1998 I visited her in the hospital and tried to tell her who I was by sign, since she was blind and most of her hearing had eroded…I think she knew, because she smiled.
At the cemetery, he and I were crying. We looked at each other and moved into this huge hug that many misinterpreted…they thought he and I would be the ‘rebound’ sort of thing for each other…It wasn’t like that at all.
We’d both seen spouses through unspeakable things, and had part of our own innards pulled out emotionally in order that we support them as they needed.
He is the one person who understands as much of the entire scope of what I went through as an outsider can… and he believes, I think, that I am the same for him. Comrades in arms, in a way.
He remarried this decade and she’s been great both to him and for him, and …we get along well.
And after all the **** that his life has had in it….
He lost his job in December.
He has no health insurance.
He has no money (and by that I don’t mean even 500 a month. I. mean. none. zero.) He’s applied for SSDI Medicaid, Welfare, food stamps but those things take time.
His wife cannot work.
His electric, cable, phone have been shut off.
They’re repossesing his car next week.
And his landlord has indicated that unless the rent is paid in two weeks they will start proceedings against him. (When I heard this piece last night, I googled Ohio’s legal-aid website, gave him the number, and told him to call from his brothers phone, so they can stop the landlord from trying to evict him…I can’t do much from here, but by God, I owe him at least an effort to keep a roof over his head. )
But, he won’t be home this week anyway…
Because they’ve found throat cancer. The hospital he’s going into for the first round of 96 hours of chemo+radiation is helping him with an indigent program intended to ‘tide him over,’ until the benefits kick in.
There are two, single, very bright spots in all this.
One, from exploratory results, the cancer has not, metasisized. It is confined to a single source only.
and Two…the hospital he’s in…is the same Bigshot Hospital that saved my ass from cancer back in 91-92.
So, they’ll nail the cancer, I’m certain of it. He’ll walk out of there cancer free sometime in the future just like I did.
He’s chosen to be my family, and I’ve chosen to be his…
It’s interesting….because some parents or family members of person’s with disabilities can show ambivalence or negative emotion that they have this person in their lives…a relative…that they believe has made them work harder as a parent or family member than they would have had to do if the person was temporarily able-bodied.
I love my genetic family, but honestly, sometimes…
I love my friends, my family-of-choice a tiny bit more.
Because there are the occasional fights, the disagreements…the drifting away…
But not ambivalence. They want to hang out with me knowing (by this time, my sometimes difficult nature). They take me as is, where I am…no questions.
So I’m praying for my Cuzz today.
And I wish to any-gods-that-ever-were that the Congress would suck it up for health’s sake and *pass something,* so that he can have a *job* when he recovers.
Sometimes, I hate my brain’s dreaming process
Not very often now, perhaps once every nine months, I have certain dreams where I do not have any idea that they are dreams…until I wake up.
Most of what I’ll call my ‘regular’ dreams are silly enough and about odd unimportant things that there’s a little sliver of my consciousness that says, while unable to actually wake, and get ‘out ‘ of the dream: “Hey, you know this is a dream right?”
These, on the other hand, are particularly vivid and realistic in setting and light and sound. They look like reality. I don’t know that I’m dreaming.
And he’s always in them.
In the latest one, I find that the late husband isn’t really dead. He’s been held somewhere all these years.
(my brain’s odd processing of the current discussions of Gitmo, no doubt)
He will be coming home and there is much preparation to do….
(and this is the piece of it that makes no sense; that should have jogged me that it *was* a dream.)
He has to go somewhere else in three weeks, and he won’t be coming back from there.
In the dream, it made me sad, but oddly foccused.
“Ok. I only have a little time. What shall we talk about? What will we do?
What is important to tell him about these past years? (Certainly not my post-widowhood, um, wild times…)
And I was keyed up with joy. Held like a tight string, ready to jump, because more and more calls were coming from him….crying from amazement, not from grief….
“I’m at the airport, honey.”
“I’ve picked up the car…” “I can’t wait to see you.”
And then, friends actually *saw* him, coming up the walk, laughed and described him…and the front door opened…
and I woke up.
And the crushing weight of what’s true, all compressed into that moment of wakening….I thought, “Lies! all lies and fakery…D@mnit!!!!”
Loved ones should only be taken from you *once!*
I had to cry for fifteen minutes.
Then I showered and went to work.
