Death and Guilt (Part 1)

On September 17, 2011, I woke to find my wife in the bed beside me, blue and not breathing. I denied it for as long as it took me to rush to put the pulse-oximeter on her finger. nothing. it stayed black. I put it on my own finger to make sure it was working, and it was. I tried it on her finger again. Nothing.

She was dead. There was no going back, no changing the past. I had to live with all the choices I had made for her over the past few months. This would come close to killing me.


Miriam was a hot shit writer, but she could no longer write. She didn’t have the concentration or the manual dexterity. The didn’t have enough breath to use a dictation program.

She would watch movies and TV shows on DVD all night long while I slept. Every hour or two, she would wake me to change discs for her. She didn’t want to sleep. “I might die in my sleep,” she said. “I don’t want to die.”

That’s the thing, she didn’t want to die. She also didn’t want to go through massive pain and discomfort. As her Mitochondrial Disease took more and more capabilities from her, she became more frightened.

We tried to put off the inevitable. We had a tracheostomy performed, so she could be on a ventilator most of the time, especially when sleeping. The problem was, the operation left her feeling as if she was not breathing at all. She became convinced she could die any minute. She would scream at me as best she could when I left her side, even for a few minutes. “I’ll be dead when you get back.” She said. I tried to convince her that with the ventilator doing her breathing, she literally COULDN’T stop breathing. It didn’t matter. She was convinced she was dying.

The medical staff didn’t help. Nurses when asked if she was dying would become evasive, or say that she might be. Doctors had no solutions, and actively blocked our efforts to seek expert help outside the hospital. Allowing us to do so would expose their own incompetence, after all.

When I did go away, leaving the computer in front of her, I would sometimes find she had posted using my facebook account that she was dying and needed help. I felt helpless.

Eventually, we had the tracheotomy tube yanked, and allowed the hole to close over. We went home, and along with some hypnotherapy, Miriam felt like she could breathe again. Of course, her breathing was no better than before, and it would continue to grow weaker.

(To be continued).



Photo 10I’m making progress.

For the past four and a half years, I’ve been grieving the loss of my wife, my soulmate.

Miriam Braunstein died sometime in the early morning of September 17, 2011, a Saturday.

There were times when the grief was not so bad, and there were times when it was terrible indeed. I have see-sawed from functional and generally okay, to total breakdown and wishing for death.

For the first four years, I went to a therapy group, offered by William Beaumont Hospital’s hospice program. This is ironic in many ways, mostly in that William Beaumont Hospital does not truly care for it’s patients, but exploits them for the ability to bill insurance companies, and keep expanding their empire. This under the aegis of being a non-profit hospital.

When I self-diagnosed myself with having “complicated grief” (a diagnosis that has little support in the medical community), I was advised by the group therapist to start seeing a one-on-one therapist right away, and to transition away from the therapy group.

I thought this was a little abrupt, until I learned that the therapy group was going to start turning away those who had been in the program for more than one year. One more example of Beaumont’s uncaring nature.


I did make arrangements to see a grief therapist, and I got lucky, because I got a very good one the first time out of the box. Contact me if you need her name and number.

We went through my problems, where I was at that time, the emotional teeter-totter that was leading me to a sense of despair. When, I asked her, would I be happy again? When would I be able to deal productively with the pain from Miriam’s death?

It was a loaded question, and I didn’t know how complicated it was. I told her my stories, of hospital abuse, horrible malpractice that was covered up, the mistakes made by so-called medical professionals. Of the guilt that followed me around, dragged at my soul like an anchor.

I told her that there were good times too, that I had many positive memories of being with Miriam, but the traumatic and negative memories kept forcing themselves to the forefront of my mind. That they would come to me as I lay down to sleep, when I was alone in my car, or sitting at my desk at my workplace.

She sympathized, and slowly guided me through the telling of these negative memories, and negative memories from earlier in my life, dealing with my abusive father. We took each memory and examined it, and she would ask me how I felt about this memory now, years later.

And slowly, I began to see where my problems lay.

They are big problems, of low self-esteem, even self-hatred. Obsession with guilt over perceived failures in my care of Miriam. Deep seated longing for something I can never have again, the physical company of my beloved. Post Traumatic Stress Disorder, from the many, many times emergencies struck that had to be acted upon correctly, instantly.

But together, the therapist and I are working on these issues.

And I see progress. I still cry in the night. I still have nightmares. But my most recent nightmare had explanations, and signs that my subconscious was beginning to understand reality.

I dreamt that I was outside a hospital procedure room, That there were two patients in the room, Miriam and one other. There was a pane of glass between me and the inhabitants of the room. There were also two medical personnel in the room, but I can’t remember their faces. I could see that Miriam was in distress, that she was dying. The medical personnel were doing nothing to prevent this. I could not communicate with those in the procedure room, the glass kept my cries from being heard.

I remember this dream vividly, and it brings to mind two things, one healthy, one somewhat ambivalent.

Firstly, my subconscious is starting to realize that there was nothing I could do to prevent Miriam’s death. My inability to communicate with Miriam and the medicos was indicative of the fact that Miriam’s death was completely out of my control, and that I did not have a chance to discuss Miriam’s status with her, due to her being asleep 23 hours out of 24 for the last weeks of her life.

The other implication was that the Medical personnel at Beaumont turned away from Miriam the closer she got to death. This is true, except for one nurse, who I will mention by name: Marla. Thank you, Marla, for not turning away, and being willing to look death in the eye. But she couldn’t care for Miriam all the time, and the others that came into her room did nothing for her, and looked at me as if I had no right to be there, with my wife, as she was dying. Not that I accepted that fact. I was in deep denial. In my head, we were simply in hospice so she could go home, and be where she wanted to be.

All this, from one nightmare.

I feel hopeful now. I have goals, both long-term, and short-term, and I will work towards those goals. Whether or not I succeed, I will also be working to pull myself out of the hole of depression and uselessness I have been in since Miriam’s death.

I will never forget her. I will never completely stop grieving. But i will fill the void in my life left by her death with new memories, new achievements.

I will grow again.

I wish, for anyone reading this, that grief touches you only lightly, for it can be a terrible thing.

Miriam’s Last Days

This is my first day with a new computer. Purchased, in light of a suggestion made by my therapist, because I might be finding it hard to write on Miriam’s old computer.

It was a logical conclusion. I had mentioned several times in therapy how much it hurt that Miriam was unable to use her computer towards the end of her life. She had to have me start DVDs for her, because she was unable to click on anything.

This did, indeed, cause me great pain. But not nearly so much as seeing Miriam deteriorate so quickly. I was panicking, because it was becoming obvious to everyone but me that I was going to be losing her soon.

When Miriam decided to enter Hospice, I didn’t object. I simply asked “Are you sure?” She said she was, and a few hours later, I was signing the papers for her while she slept.

Later, though, she said she wanted out of hospice again. I asked the nursing staff about it, and they told me the Miriam would have to have a primary doctor to sign her out of hospice. She didn’t have a primary doctor before going into hospice, just the fellows from the Beaumont clinic. I did not bring this up to her, however. I simply said “But Miriam, you’re going to get to go HOME.”

It was a problem, communicating with Miriam at this time. she would only be awake from a half-hour to an hour out of every twenty-four. She sometimes didn’t remember what had happened the last time I had talked to her. And my emotions slid further and further into denial. If we stayed in hospice, Miriam would get to live with us at home. We would have a chance to talk about what was happening to her.

Well, she went home, all right. She got to lie in her own bed, in our bedroom, next to where I slept. she woke up once, at home, on the second day. “Where am I?” She asked. “You’re at home, sweetheart,” I said. She nodded, accepting this, and asked for water. Dennis quickly went and got her a glass of water, and held it to her mouth so she could drink. I had crawled out of my bed and onto hers, trying to be as close to her as possible without hurting her.

And that was it. Shortly afterwards, she fell asleep again. She would never wake. Later in the night, Dennis heard Miriam having labored breathing. Together, we repositioned her so she was further upright in the bed, taking weight off her chest. Her eyes opened once while we were repositioning her, saw that it was me and Dennis, and closed again. I didn’t think to put fresh batteries into her pulse-oximeter and put it on her finger. How many times have I punished myself for this oversight? More than I can count.

In the morning, I woke up and saw that Miriam was very still, and slightly blue. NOW I thought of the pulse-oximeter, and I quickly put fresh batteries in it and put it on her finger.

It registered nothing.

I tried it on my own finger to make sure it was working. Sure enough, it said my pulse-ox was 97%. I tried it on Miriam again. Nothing.

In the days that followed, I was numb to the world. My Miriam was dead. What was I going to do now?

Four and a half years later, I still don’t know the answer to that question.

On Death


I am not peaceful.

I am also not inspiring, sadly resigned, bittersweet, reflective or wise.

Maybe I’m supposed to be, but I’m not. I’m angry, afraid, bitter and in denial.

As far as I can tell, that is pretty typical for a dying person. I’ve heard about the peaceful, lovely dying person who gently takes the hand of eternity while everybody plays mandolins and strews flowers. I’ve just never seen it, and I have a hard time believing it.

I share a room on the hematology-oncology unit with a woman much closer to the end than I am. I take her behavior to be a more advanced stage of the same feelings I have. But I’m far removed enough of the time to not think about it. People who will die as soon as this woman is going to die apparently can’t. She tried—we’d watch movies, or she’d tell me about her family and give me recipes, but in the middle of a pork loin broil, her face would crumple.

“This isn’t fair,” she’d say. “I don’t want to do this. I’m afraid.”

She sometimes cried. Or she’d get angry. A nursing aide would come into the room and ask how she was doing and she’d snap “I’m dying, how do you think I’m doing. “I’m dying.”

She asked me over and over how she was supposed to cope with this.

“I have no idea,” I told her again and again. “I don’t think about it.”

How can you not think about it, she wailed. “I can’t just not think about it. This is my life.”

The only answer I had was: I’m not as close as you are. So I pretend I’m not dying. I force myself not to think about it. When I can’t not think about it, I cry and yell. I’m cruel to my husband. I lay on my bed and wail.

I have nightmares about the things I can’t think about. A dead friend and I are walking along with a group of other friends, who stop while she and I continue on to a big house with a shaded sunporch.

“Why isn’t anybody else coming with us?” I ask. “Why did they stop?”

“They can’t see the house,” she answers. “We’re dead. So they can’t see us and they can’t see the house. Because we’re dead, and they’re still alive.”

Or I’m talking to a high school friend, and partway through the conversation, I realize she’s dressing me for my funeral. “Put some eye makeup on me,” I plead. “If you have to bury me, make up my face so I’ll look pretty,” and she agrees.

The most frightening: I’m standing in a big group of people next to a building that I realize is collapsing on us, and I have time to think “it doesn’t matter what I believe anymore, because I’m about to find out if there’s an afterlife,’ and the dream ends as the building falls.

I assume my roommate had these sorts of dreams, but they started to infringe on her waking life. She would wake up and have no idea what day it was, she’d just be upset and agitated. She was obsessed with the idea that they’d miss her dialysis and forget about her. Every time she woke up, I’d tell her that she hadn’t missed it.

“Why aren’t you upset,” she cried. Why are you so strong?”

I’m not strong, I’m just not as close as you are. I can push this away, tell myself I have many months, a few years—you have weeks. By next season, she’d be gone. Ironically, she discovered how close she was to he end of her life just as her daughter announced she was pregnant.

“All I want is to see my grandbaby,” she said. But the idea that you can cheat death long enough to give someone one last experience is a lie. No matter how much she wanted to live another year, to see her grandchild, spend a little time with it, she couldn’t. It wasn’t going to happen.

“You meet the baby in heaven, and send him on his way,” someone says.

“Bullshit,” she cried. “I want to see my grandbaby.”

Eventually, she started on Xanax, to give her some peace, and then they took her home.

“Take care,” I said. I wasn’t going home for weeks. “See you next time around.”

“No you won’t,” she snapped. “There won’t be a next time. Good luck. Stay positive.”

“I’ll think of you,” I lied. I’m not positive, I’m negative, I’m sour, so I just don’t think of it. And I can’t think of you. Not for long, not for long, or I’ll go down. I won’t be able to stop thinking, and I’ll be afraid for the rest of my life. And I can’t stop being afraid. I don’t want to die, not today, not in a year, not ever. And I’ll make my husband cry, and we’ll never stop. I can’t think of you or about you and I won’t.

And I don’t. Much.

A Drug Story

Let me tell you a story. It is a story about a chemical, a drug. This chemical is known as phenytoin, if you know anyone with epilepsy, you may have heard of it, it’s referred to as Dilantin. It is the drug of choice in emergency rooms to fill someone up with if they have just unexpectedly had a Grand Mal seizure. First you give them a sedative to halt the seizure, then you fill them up with phenytoin to keep them from having any more. Wikipedia says “(Phenytoin) is on the World Health Organization’s List of Essential Medicines, a list of the most important medication needed in a basic health system.”

Now, aside from being pretty decent about keeping someone from having seizures, phenytoin has one very unusual property. If you mix it with a sugar, or a variety of other chemicals, it will crystallize. Instantly. My stepfather used to teach organic chemistry, and he would use phenytoin to demonstrate how quickly crystals could form by mixing the liquid phenytoin with sugar.

My late wife Miriam, along with many other health issues, developed epilepsy fairly late in life. When she had her first Grand-Mal seizure, after it had stopped, the ER docs pumped her full of phenytoin, a fairly large dose, to bring her Dilantin blood levels to a therapeutic amount. It made her dizzy, and somewhat nauseous, but that would pass, they assured her.

Unlike most ER patients, Miriam had a central line, a direct route to her heart made of a semisoft rubber-like material. Usually, when an ER pumps someone full of phenytoin, using a peripheral line in their arm, they get a pill to take to keep their Dilantin levels up. No so my Miriam, who could not absorb oral medications easily, what with having an ileostomy cutting off her intestines six inches below her stomach. She would just dump that pill right into the ileostomy bag.

This means that she had to put the phenytoin through her central line. Where, just like magic, it would crystallize into a rock-hard block if it mixed with ANYTHING but normal saline. This happened to five or six of Miriam’s central lines before her surgeon got tired of it and insisted that she switch drugs to something called FOSphenytoin. Fosphytoin, also known as Cerebyx (brand name), would not form rock-hard blocks when mixed with other things, it would simply turn cloudy, forming what you chemistry buffs know as a precipitate. It would then become unusable, but it would not block off a central line.

Feeling knowledgeable now? Have you had enough of the dry fact-filled stuff? Good. Now here is the story: If you have read Miriam’s previous articles, you know that she was dependant on stuff called TPN for her nutrition. It had to be given intravenously, either all the time (not convenient), or in 12-hour cycles (more convenient). One sunny day, as we looked out of the window at the Beaumont courtyard, Miriam’s nurse (a Licensed Practical Nurse, Rather than a Registered Nurse) came into her room to hang her fosphenytoin.

Miriam had a central line with three lumens, or tubes, all of which emptied separately into her bloodstream. All three were being used at the moment. One was being used for her TPN. Another was being used for her pain medication. The third was in use to give her a dose of antibiotics. The nurse, unwilling to come back later, which she should have, since all lines were in use, Decided to piggyback (deliver the fosphenytoin through one of the running lines). What did she decide to piggyback the insanely unstable fosphenytoin with? The pain meds? No, she knew that was incompatible, she must have looked fosphenytoin up in her drug book. Also incompatible with the antibiotic. But the drug book hadn’t said anything about TPN.

Now, I’ve just told you that TPN is a form of intravenous nutrition, right? Well what is one of the things we humans have to have in order to function, at the most basic level? Here’s a clue: it’s what we depend on for our energy. Give up? Sugar.

What did I say earlier about sugar and phenytoin? Guess what happened. She started the Cerebyx through the TPN, and the line immediately clouded up. Fortunately, both Miriam and I had been paying attention. We both immediately yelled “STOP THAT PUMP!”

The nurse was confused. She had flushed some saline through the line before attaching the Cerebyx. What could be the problem? We explained the above to her in short, simple sentences. We then demanded that she disconnect the tube, including TPN, Cerebyx and all, from her line, and flush her central line. Then we said she had to throw it all away, as it was contaminated.

This is where the nurse became angry. “What do you mean I have to throw it away? I’ll just run the fosphenytoin when your antibiotic is done.” No, we said, it is contaminated now, there could be sugars all throughout the bag. Look at the tube it’s connected to. Look how cloudy it is.

The nurse growled at us, and refused to throw the contaminated tubing and medications away. It wasn’t until the charge nurse came in, also growling, that we explained just what had almost happened. The charge nurse turned white, and her hair stood on end. “I’m so sorry. I’ll see if I can assign a different nurse to take care of you until the next shift.” Then she took down the incriminating bags and tubes, and hurried out of the room with them.

Ever wondered why it is a good idea to have someone to advocate for you in the hospital? This is one of the reasons. If I had not been there, standing up and being intimidating, the nurse would never have listened to Miriam, and she would have been pumped full of tiny phenytoin crystals.

Why am I telling you this? Because things like this happen in hospitals all the time, and they are going to happen more and more, as the most experienced nurses are forced out, and brand-new nurses just out of college take their place. It’s happening every day, as hospitals try to cut costs. Protect your loved ones when they are in the hospital, and make sure you educate yourself about every drug you or your loved one is taking.

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?

RIP Michael “Claw” Paul (1960-2014)

Claw with me and Miriam
Michael with me and Miriam

I just found out today that my friend Michael Paul has died. I was shocked and saddened, but not surprised. Michael was born with congenital defects to his heart and hand. He had many surgeries to correct these defects, but they left him with a weakened heart and a three-fingered hand (thus the nickname).

He was a good friend to me and my late wife Miriam during our time at Wayne State and afterwards. We went on many outings together, and I will always remember his sense of humor about his disability, and how he shook my hand the first time we meant with his malformed hand, to see if it would make me uncomfortable. To be honest, it did, briefly, but I quickly understood it was a test of my ability to accept him. And accept him I did. He was a genuine, honest, and hard-working soul, putting himself through grad school working at night as a parking lot cleaner or snow-plow driver, depending on the season.

After graduating, he became a social worker, working at the Center for Independent Living. He helped many people get their lives together despite their own disabilities. He was a good man, working towards the benefit of others.

I admired him greatly. The world will be a poorer place without you, my friend. I’m sorry you had to go so young.

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.