A member of the family.

February 1, 2009 at 1:44 PM (Uncategorized) (, , , , , , , , , , )

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.

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Broken cipher

June 16, 2008 at 4:46 PM (Uncategorized) (, , , , , , , , , , )

When did I turn left,

That corner, bend, crosstreet that means ‘liberal’

I was bent that way quick and painful…but I would have gotten there by the scenic route anyhow.

The family, you see. They’ve been wondering. When did I become a member of the ‘Democrat Party’ (cue shudder for wrong spelling)

I never was ‘on the right.’ Just wanted to be apolitical, research from the primary sources,case by case…

It began in March of ’89 when I was advised my beloveds clock was ticking…

Or, did it begin in 1987 when our first friend Ray died?

Or, was it 1982, before he returned to my life, when I knew nothing, and he was given Hobson’s choice, take the factorate, sign the waiver and you’ll-never-be-able-to-sue-but-you-will-be-able-to-be-treated-for-your-existing-life-threatening-condition?

Or, was it 1981 again, before me and after me, when he actually believed with Falwell on the projection screen that it was gods-vengeance-against-the-gays…

It began for me in 1987, when I began to form my own opinion about the conflicting medical data and four allegedly private, allegedly medical providers,who had allegedly used unsafe places to get medicine and allegedly unsafe practices in preparing it.

Or, completely separately my own cancer, having nothing to do with him, when I was first told I was in immediate danger of death, and then the story changed…I’d have to wait three weeks have someone actually start holding off death, to go to another hospital. God obliged, I suppose, because I lasted those three weeks.

Or a brief bit of political hilarity in 1992 when my mother in law was scandalized by the husband’s “Jessie Jackson– Jobs Peace Justice” t-shirt. He wore it to mow her lawn and drink a well deserved beer in her kitchen….he’d made quite a journey from Falwell to Jackson, and voted for Clinton…the guy who lied and then, nobody died. And then Jesse Helms sent him correspondence that informed my husband that his ticket was punched for hell. And made my husband cry.

(I think the husband wouda been a Hilary person, today…maybe Obama, maybe not.)

Was it In 1996 when I read that: Allegedly in June 1982 Six*months*after*they*were*allegedly told by the *alleged* govenment watchdog agency that they must retool, relearn the process to avoid *alleged* contamination of the *alleged medicine. that had previously not been the alleged instrument of his death, but the thing that kept him alive…

Why would anyone think I could trust a corporation after that? About anything?

Don’t trust them when they give you products and don’t trust them when you work for them.

Just don’t.

Or in 1998 when my life and Trent Lott’s intersected briefly.

He was holding up some small sliver of justice regarding my spouse’s demise and I sent him an email:

“Shame on you, Senator.”

It was, in fact my first ‘political dissent’

And then 9/11 forced us all to look at the whole world, not just our own personal little mistrusts.

2002. They make stuff up, and we start a second war. Money, disability,civilians women children soldiers….wrong war wrong place….And always my grim pragmatism outside of any moral outrage, “Who, for f***’s sake said we had *money* to give away to wage war like this?” I certainly didn’t.

Afghanistan I might have agreed with a blank check for in the beginning. (Yes, I’m the sort of bleeding heart liberal that wants Osama’s head on a pike in Times Square. I’m all soft and squishy like that.)

Not Iraq.

And even for Afghanistan: Torture? I never agreed to that.  If we torture, then *they will too.* I don’t want the torturing of US soldiers on my conscience thanks.  Gitmo? Well *that* worked out well, didn’t it.

Throwing CIA people under the bus to make political points. Ditching the Geneva Convention. More wiretapping of all of us here, so they don’t have to do it over there…Didn’t agree to that either.

The legal concept of Posse Comitatus stripped away, and not yet restored. (Habeas Corpus is on it’s way back, though. ) The politicization of the Departments of Education, Vocational Rehabilitation and Justice.

And then 2005. I admitted I was impaired and read a flood of blogs about neglect, abuse, abandonment, invisibility,disrespect…and began wishing that the Democrats would not just work for us, but know about us too.

And Katrina showed just how much this great country could do for it’s poor and/or minority and/or impaired people if they were trapped with no way out

Why would I trust that govermnent. About anything?

And (deep breath) That, family of mine, is why I am a Democrat.

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Campain

April 6, 2008 at 7:50 AM (Uncategorized) (, , , , , , )

Here, someone tells us that patients with an illness condition or impairment, shouldn’t bring their informed stories to the campaign trail…

just hope that it [cancer] doesn’t become a common occurrence on the campaign trail. The cancer conversation is best left to the experts, researchers, and doctors

Just for the record: This guy works for the candidate that wants to exclude anybody with a preexisting condition from his healthcare plan…..

(update) Countdown had Elizabeth Edwards on tonight to discuss this….She supports Clinton’s plan over Obama’s and details that preexisting conditions would be not be covered under McCain’s Plan

People *with* conditions/ilnesses/impairments: ….Are People! People with rights. People who vote.

When I was a person newly diagnosed with cancer, the person who made me decide to seek treatment and live…was a survivor! A woman on the other end of a phone call from the American Cancer Society who explained what my options might be, the downsides and upsides of treatment…and who laughed a lot.

John McCain gets to speak about cancer. He’s had it.
Elizabeth Edwards gets to speak about cancer. She has it.

Mr Malek, *also* gets to speak about it, he’s involved in research.

But no one gets to dictate what patients can and can’t speak about.

If people with ilnesses or impairments (they are different) don’t speak about their experience during an election year:

Lives won’t improve
Lives won’t be saved.

And policy makers in a position to improve quality of life or even life expectancy won’t get eletcted.

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At Regular Intervals Part III

July 18, 2006 at 11:25 AM (cancer, Hospital Staff Lunacy, Hospitalization, illness) (, , , )

1991

Friday, Valentines day. Lovers’ Day.

At about 2:00 my physician informed me that I had Hodgkin’s disease, a cancer of the lymph nodes.

Stage 3b which was basically one stage away from, ‘Get your affairs in order.’ They felt very strongly that it was important that my chemotherapy begin the following Tuesday. (Until, of course, it was determined that my insurance would not allow me to be treated there. Then, a three week wait for record transfer to a hospital *twenty minutes west on a city bus* was the best way to proceed.)

Out they went. In came my husband. For the next 45 minutes we talked about what this would probably be like. I tried to maintain a look of calm, as much for myself as for him. I had told him the night before that it was fine for him to go to Texas to visit his sister since we had both made plans to go. But my inside self was crazed with fear and begging him to *see that,* understand that, and stay behind, for me. 45 minutes after I was diagnosed he left for the airport, on that night that I was told that I too, might die young. My Mom and stepfather left also, shortly afterwards.

Discernment eluded both of us that day. He never understood that I wished him to stay and I never knew until much later that he wept during the entire flight down to and the whole visit was full of tears for him. “What will happen to her,” I am told that he wept often and wondered.

And the records nightmare after he and I returned home:

The hospital that I was *diagnosed* at first told me that my chemo abosolutely *had* to start the following Tuesday, due to the late stage of my cancer. Couldn’t wait. Had to rush in there and save my life, after all.

But magically the next day, they didn’t think it was so urgent. They did not want to treat me because they did not have a contract with my private insurer. But, there was another nifty hospital *five minutes by car* away, that *did* have a great cancer center as well, and a contract with my insurance carrier.

So I was slated to get my care there.

Slight problem. The doctors at the new hospital wouldn’t proceed without reviewing my medical records from the old hospital, specifically all the minutiae in the biopsy report itself.

This was just before the digital revolution began…so records were still on microfiche or in hard folders.

I called Hospital One *every day*

Records Toad at Hospital One: “Well, can’t you come and get them?”

Me, in bed technically terminally ill on the phone: “Actually no. I’m unable to get out of bed, and if you’ll check the chart, my husband has a serious immune system illness as well, and right now *he’s quite feverish and has a case of bronchits* so he won’t be LEAVING THE HOUSE RIGHT NOW!”

Records Toad at Hospital One:

“I don’t understand why your’re so upset.”

“Because I want you to give the records to a courier have the courier *walk outside* get on City Bus # [whatever the bus was] ride ten minutes west, get off the damn bus walk into the [Cool Hospital Beloved By My Insurer] and *give the biopsy results to the right person, NOW!”

Records Toad at Hospital One: I’ll have to talk to [xfdkdfijge]. And they hung up.

That went on for *three weeks* before I actually began the chemotherapy that saved my life.

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