Tag Archives: chronic illness

Disability Rights

Miriam in the hospital
in her typical hospital environment

February 7, 2003

Disability rights.

I’m absolutely for them. Infanticide of disabled babies. No way. Optional euthanasia based on disability. No, no, no.


I can look at all these things with a perfectly legitimate perspective: I’m an incomplete quadriplegic. I use a power wheelchair. Other people help me to bathe and dress. I’m legally blind. Any number of gadgets, not inconsiderably a plain old magnifying glass, make print accessible to me. The computer I am typing on makes all print white on black and 18-point.

But I often feel just as isolated from the disabled community as I do from the able-bodied: neither of them understand what I certainly consider the major obstacle in my Quest for Life Quality: I’m living with (and dying from) a chronic, progressive, largely untreatable disease. I have often thought at various points in my decay, that if the disability was all I had to deal with, I could show Singer and Kevorkian and my next door neighbors, for that matter, how little it matters, with good equipment and good support (and good home attendant care) to be disabled.

But I can’t do it. Because of the disease, which, before it takes my life, is going to consume it, corner to corner, floor to ceiling.

Like most smart, middle class kids, I went to college. Even majored in something. Even graduated. For ten months afterward, I had a great job in my field of choice (journalism, which has notoriously few jobs, good or bad.) I started work in October. I went part time in August. I quit in April. Since then, almost six years ago, the longest period of time I have spent unhospitalized is three weeks (late 1999). My average home stint is eight to 15 days.

The disease took my ability to eat in 1998. I subsisted on predigested formula via jejunostomy tube for almost a year, when, starving to death, I started a form on intravenous nutrition, nicknamed TPN, that I receive 12 hours a day via permanent IV lines in large veins, “central” lines, called the brand name of the inventors, Groshong, Hickman, Broviac. Lots of people have these placed for cancer treatment, but few people have a lifelong dependence on them. They get infected. Wicked easy. The infection gets in your bloodstream. After a corrosive course of IV antibiotics, they must be replaced. Every placement is a surgical procedure. Tomorrow, I will receive my 17th line. They are traditionally in the chest, but my veins there long ago gave out. We’ve also exhausted my abdomen. Tomorrow’s line, please God, will be in my thigh. The interim line is tenuously in my right ankle, and I am looking forward to the surgery like Christmas.

The goddamned disease.

Further on the GI process, my gut has been replaced by an ileostomy. Like most people with CNS damage, I can’t pee, so I have a catheter surgically placed through my abdomen, just under my bellybutton, into my bladder. Simple fold and fit concept. Like lots of quads, if the catheter malfunctions, I sweat a lot and then wet my pants. Humiliating, but often goes along with spinal cord criphood.

The disease ate at my bone marrow, and I don’t make red blood cells. My supply is transfused (via central line) every 2-4 weeks.

It ate at my lungs, and I wear oxygen 24-7, five liters at night, two during the day. It ate at my brain just enough to trip up grand mal seizures, which are controlled with yet another substance I drip into my chastened Broviac catheter (medical people who ask to see my catheter site are wholly unprepared for me.) it eats and eats at my muscles. My head does not want to support itself, and my neck is abdicating responsibility. My hips and shoulders are wasted into dislocation, because there is nothing holding them in place anymore.

What comes next?

Mir's Peripheral Line

Miriam Braunstein, March 7, 2008

A kidney infection. It wasn’t a big deal, but after five years with an indwelling suprapubic catheter, it was fierce. I needed IV antibiotics.

We were Los Angelenos then, only home in Michigan for a family reunion. In my family, that basically translates into “will Daddy or Miriam die first? Let’s party on it!”

So I would have just gone to my doctor, but he was in L.A. He called to tell me the sample he had was a tough bug, and my roommate told him where I was. So he called and yelled at my big sister, who told him EXACTLY where to get off (meek! This House-like infectious diseases doctor was meek!)

And the ER said they’d have to admit me for treatment.

But…a plan. Mom lives in Florida, but she’s still licensed as a Registered Nurse in Michigan. Can’t Mom start the IV and run the dose twice daily?

Infectious Diseases thought about it

We’re here for a REUNION. Daddy has cancer and Miriam’s terminal. PLEEEEEEZE?

Oh, okay.

I got the first dose in the ID nurses break room (no idea.) My cruddy little chemo-scarred veins wouldn’t hold a line. It held for the 60 minute infusion, then no more.

We came back to my sister’s house just before the home health nurse came to deliver the doses of antibiotic and IV supplies. She and my mom sort of “nudge, nudge, wink, wink’ed” each other. No training needed, obviously.

And the next dose came due.

No problem. In the kitchen with the good fluorescent light. Scrubbed with isopropyl.

Mommy found a vein, confidently strung the tube in, flushed it…and it broke. No good.

Other arm. Got the vein—which was infiltrated. Nope.

This was the last time I ever showed any outward sign of pain while being IV stabbed.

She moved down the arm, two more failed sticks, and saw a likely vein in my hand. She stuck the needle in…and I watched the vein blow. It bled.

Bled in strange shapes. Droplets.

I looked up from my hand to my mother. Her tears were dripping onto my hand, she was crying absolutely silently.


“I am so sorry, baby. I am so sorry I have to hurt you.”

I will never forget how her eyes looked that day.

It was the first time I had any conception at all of what it would be like bearing a child meant to die before your eyes, year by year, stick by stick.

Drop by drop.

With my mother’s tears dripping onto my hand, she finally found a vein that held. Ran the antibiotic. Heparin-locked it.

We found sites for those four days, and I got all my medicine. After I came home, I had a central line put in, so we could work around those crappy veins.

I will never show pain at an IV stick, ever. I stay absolutely deadpan on the rare occasion I need a peripheral line for some reason. Ten sticks. 15 sticks. Last month, 26 sticks, no line held.

My mother’s tears and my blood will never mix again. Not if it kills me. Never again.