July 29, 2006 at 11:02 AM (family)

Well, went back east last week to do some necessary things.

I was very pleased to see a place I once thought would blow up after a bit of a shakeup has not only survived but thrives after ten years…

I got some poignant reminders of what matters in a “hometown.” Very comforting. Very cool. Like an old pair of jeans, or big shoes or a well aged jacket. (I was gleeful at the unexpected four small cookies I ate at my aunt’s house. Someone had finally convinced her to make her unequaled Christmas sugar cookies, carefully thin, with just enough icing…in *non Christmas shapes* small round cookies cut out with a juice glass, so that the rest of us can appreciate her for those *any time of the year* now. The mind boggles…that small bit of bliss any time she gets it into her head to bake???? Awesome. I used to make them, but no longer have the grip strength or precision grip to take the 1/16 of an inch tall (rolled out that thin) baked cookie out of the oven warm, and frost it just after it cools without breaking it. ] My family was very nurturing, welcoming, funny, going above and beyond the call of helping me out while I was there, and yet not trying to smother me and tell me what I should do… One family member in particular, that I had never been able to chat with much was able to give me advice without the preface that I never can stomach, “This is what I think you ought to do” regarding my present situation, because he’s got some parallels going on. I asked him about his situation and he gave me some great insight through his own experiences…two very specific pieces of which may help me in my own reconstruction.

And, I was unexpectedly shown some reasons why I’m here now instead of there. Because those reasons matter just as much as what I miss.

I imagine I’ll be posting here a bit less for a time…have to set up frameworks,support systems, here for the new paradigm that I find myself in.

Go read the disabled bloggers listed by Ragged Edge, or Disability Studies Blog while I’m busy reconstructing my life after the pre June incarnation blew up.
Hugs to Goldfish and Gimpy Mumpy, and the commenters and lurkers too,

And, this is a really temporary thing…

As Ahnold said:

“I’ll be back.”

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Veto, Science and the word "Cure"

July 20, 2006 at 2:09 PM (medical ethics) (, , , )

Those with disabilities often loathe Telethons and empty promises of “cures” whether by big pharma, NIH,faith healers, herbalists, etc etc.

Why? Because we’re busy with relationships, jobs, volunteer opportunities just as the able are. Many in the disability community don’t spend a bunch of time waiting for a cure We’re doing instead….Pining by the phone waiting for a cure, or focusing solely on cure rather than quality of life does a disservice to the doctors, the scientists, potential patients and caregivers. Also, many of us figure we’re just fine the way we are thanks. (The most recent X-Men movie is a good illustration of the “different is fine” idea.)

That doesn’t mean that if solid science says that there are some promising leads in Stem Cell Research, that solid science shouldn’t be allowed to run its course and perhaps find things that will dramatically change many Americans lives for the better. In other words, we’re not going to sit at the side of the road and beg for alms, but if medical advances can and do eventually help many of us, that’s a great thing.

The President has said no. That was a mind blowingly dismissive move towards science and towards advancement. His base loves it, but it’s just plain nuts. Far be it from our President to use some common sense. About anything.

But, the people that write and report on the Stem Cell Debate who are for the research have also made a mistake. And I dunno about others with impairments, but this disabled person would please ask those who support Stem Cell research to stop intensifying and reinforcing the “poor tragic people” stereotype. The mother heartbroken because her child won’t be “cured” will still love them as they are. The awfulness of being in a wheelchair and what a “tragedy” that is. (Ask the guys in the movie “Murderball” if they are feeling “tragic” today. ) Before the potential benefits for Stem Cells were discovered we were going about business as usual and we will continue to do so.

Please oppose Mr. Bush on the clear merits of the science involved and the specific conditions we hope it might help. Don’t use stereotypical images of the disabled to make your point, images that make it harder for us to be judged on “who we are” not our impairments. The “tragic” frame tells us we’re victims first. We’re not.

Crossposted to Kos

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At Regular Intervals Part I

July 18, 2006 at 11:29 AM (Hospitalization) ()

Three posts about my experience of being a “patient”


I’m eight, or so in a room that has at least one other bed and three other patients, happy that my mom is there because the shots hurt. I had pain in my leg from a group of two operations that summer, and the shots are supposed to make the pain go away, yet they hurt. Mom believed I was sad or scared.

Actually I was mad. Mad at medicine that was forcing my body to experience pain in order to remove pain. I cry when I am angry, furious, enraged. But to the outside observer I am just a weepy little girl that needs to get over it. As it takes effect the nurses laugh at my high verbal explosion, a high from too much of a good thing.

The hospital doesn’t exist any more. It was known as St. Alexis back then. I am still searching for proof now, medical records, school records.

Mom was diligent about being there.
My father had just passed the bar exam and of course needed to celebrate.
So he showed up very late, very briefly, and I am told, still drunk, although he did not exhibit any obnoxiousness directly to me at that time.

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At Regular Intervals Part II

July 18, 2006 at 11:28 AM (Able Bodied Antics, Alchoholism, Doctors, Hospitalization) (, )


I am thirteen. I’ve had a reasonable discussion with my physician. He makes me believe that my right foot needs to be steadied by fusing the ankle, breaking it (on purpose?) and resetting the bone so it cannot move side to side. I agree with him.

Mom, with all the facts in front of her is incredibly afraid that losing flexibility in the right foot will be worse for me in the long run. She cancels the sugery.

I actually fly into a rage and take her by the shoulders and *shake her.* How dare she decide what’s best for *my* foot!

She is stunned and actually afraid of me. I back down on the physical stuff but still take the (in hindsight ridiculous) position that at the ripe old age of thirteen, I am the one who gets to decide. I am left in my room to listen to another war of words between my father and my mother.

“Well, I agree with you, it’s probably a lousy idea, but you’ve got the kid *set* on it now, and once she’s set up for something…you see how nuts it is! But it’s a fact now. Now, we have to do it.”

With my father’s comfortingly lukewarm endorsement, I had that surgery.

Sometime during that stay, he also felt the need to show up completely wasted, loud, f*cked up during evening visiting hours, demanding to see me, terrorizing the candy stripers. “Where’s my daughter!!!!!!” The candy striper he yelled at came in later, after he was gone and gave me cookies and juice. I was profoundly ashamed . After all, if I was not a patient there, the werewolf would not have brought his chaos to them.

I had a horrible reaction to the general anesthetic that was used back then. So for 8 hours I was so puke o matic that I wasn’t aware that my right leg was killing me. Once the pain in that leg increased enough to register, I avoided the pain meds for as long as I could…did the white knuckle thing with my hands on the rails until 4:00 am. I remembered that last time the nurses had laughed at my rapid fire manic talking after I took stuff. So I was going to hold out. I was sweating and shaking by the time I buzzed the nurse for a painkiller.

Then Wednesday morning arrived. My orthopedic surgeon breezed in after a cheery round of golf, no doubt with some of his and my father’s mutual acquaintances, part of the Charming Drunks Who Thought They Ran Things Network.

“Well, and how are *we* today?”

I looked at him, cocked a brow and said, “I don’t know how *you* are, but I feel like SH!T!”

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At Regular Intervals Part III

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


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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