Save The Last Dance For Me

When Richard and the dog are both snoring it’s just me and iTunes, lonesome music in a crowded bed, thoughts of the future pester my brain and rob me of sleep. 

It’s dangerous to look ahead. 

I suppose it’s just my mind doing its best to prepare me for the almost certain future in which I will be, if not alone, without my best friend, whose fitful sleep and troubled dreams populate my nights.
The tapestry of our lives unravels and soon the picture will surely go. Where? Away.

I need no disturbance to keep my eyes open wide staring into the dark. I see the thing approaching. The writing’s on the wall. I don’t need a Daniel to decipher for me. 

My days are filled with it, as his brain declines and his world falls apart. It breaks my heart. 

Frantic days, I become an easy mark for the latest “alternative” remedy. All the money I’ve thrown at my hopeless hope! Daily he is less and less here.

In the snoring hours, I grieve. My sorrow tastes like lead, as heavy, as dead. I hate Alzheimer’s. And my fast-approaching empty bed.

Feeding The Ants

Today Richard called my attention t a corner in our bathroom where he wants me to be very careful. 


“Look here. See? There are about six little ants.” I looked but didn’t see any ants. “I’m feeding them.”

“You’re feeding the ants?”

“Yes, but be really careful because they’re really tiny little guys. You can hardly see them.” He squatted down to show me. “See?”

For a second or two I was speechless, then I came back to reality, wherein my husband is 79 and has Alzheimer’s.

I told him he can’t feed the ants, and his face fell in disappointment and surprise. “What do you mean I can’t feed the ants?! Why not?”

“Because they can’t live in the house. They have to live outside.”

He was stuck, so I offered, “You can feed them outside, on the dirt.” 

Richard soon wandered away. I doubt he will recall our convo. I guess from now on I’ll have to keep an eye out for suspicious crumbs?” 

I hate Alzheimer’s.

Atlantic Avenue

Atlantic Avenue stretches from the Williamsburg Bridge on the East River all the way into East New York and the neighborhood known as City Line, where Brooklyn morphed into Queens. It was always a multi-ethnic route, to a non-descript working class Italian-Irish-German neighborhood.

I remember the apartment where my grandparents lived. We had lived there too until the big falling out between my father and his father. I remember the big kitchen and the two bedrooms that shared a wall at the back. I remember the tiny hexagonal and rectangular white and black tiles that covered the hallway floors. I remember my grandmother cooking.

But I was very small. Perhaps my happiest memory from those first years was going to the park nearby. There was a maple tree with a low branch that extended out at no more than one or two feet above the ground. I clearly recall my delight at running out along that branch and jumping from the end of it onto the pungent, moist mowed grass of the park. It was just across the avenue from the apartment house. I was two.

I never got tired of it and I never forgot it. It’s funny what moments emerge as the happiest in one’s life.













Describing Dilaudid

The nausea was relentless. Truly I wanted to die because death would be an end of it. Two weeks of heaving and my gut muscles screamed like they were shredding. Okay maybe that’s a bit of an exaggeration. But in my mind they registered as raw, and I was the only one who could hear them screaming. It was me moaning that other people could hear.

Let’s face it, you know you’re sick when you call out, “Please help me” to everybody who gets near enough. Richard was mortified. Not me. I had no pride, false or otherwise.

This is the extremity. Next comes flailing your arms and throwing yourself against the wall. I know. I had several times stumbled around semi-lucid in a repeating little drama that began with me savoring a chip of crushed ice or a sip of sports drink, loudly proclaiming my delight, and more and more likely to guzzle and gulp in my dehydrated condition, knowing what must follow and not able to control myself. To hell with the inevitable hurling – I WAS SO THIRSTY after two weeks of this crap.

I remembered a bit of history gleaned from Sherry’s novels about the Arab world at that time. Suddenly I can relate to dying of dysentery on the beach where they landed with those crazy Christian Crusaders.

And today, this very day right now people, mostly children, are dying that way in that same part of the world, dying for lack of clean water.

Rich wouldn’t let me get too out of hand in the Emergency Room waiting area, and just as soon as I started heaving, the staff in charge loudly commanded the others to “Find someplace to put her!”

I spent the next two hours tucked away in a back corner, a closet with a short examining table, where they did an EKG and left me squirming and writhing with nothing but a heart monitor giving any indication anybody knew I was back there.

Even when you hold a bowl under your chin continuously, there will be mishaps. My biggest problem, though, wasn’t the vomiting. My attention was fixed and foremost on my breathing. I knew from painful experience what would occur if I let myself go even for a minute.

I had started hyper-ventilating hours before, at home. My hands were buzzing with that half numb sensation that quickly escalates to muscle spasms … and if you’ve never experienced these, you are among the blessed.

Deep slow breaths. Almost as hard to do as it was to suck on one ice chip and not swallow any of it. So there I was guzzling, retching and hyper-ventilating. It was a minimum two-hour wait to be seen by a doctor.

Honestly, with what little clarity I had left, I began to doubt I would make it. I thought I might really make this much harder for myself, if such can be imagined, were I to act out or even get into a confrontation with hospital staff … of which I am quite capable. You might even say it’s my nature.

I had continually to resist the urge to run around with arms flailing, demanding someone help me. When it almost overtook my self-control, Richard held me tight until I could once more turn my attention and efforts to my breathing.

When at last it was my turn to be seen, the doctor came in flanked by two nurses who knew what she was going to say before she said it. One of the nurses had three syringes, loaded and ready to go. She held them in her right hand, each between two fingers, all points up, ready for the command. When the doctor said, “Let’s get some …” that nurse was already pumping me full of Zofran, Ativan and Dilaudid.

Dilaudid, just two milligrams. A flower bud opened itself in my middle, radiating great overlapping loops of warmth and well-being that slowly spread to my nearly-numb finger tips and finally my breathing settled in and I wrapped myself into it and let go.

They admitted me and I lay thankfully in their angelic care for five more days. We figured out a sinus infection had spread to my digestive system and got it squared away.

And what do I wish I could do again? Don’t you know it!


A Day Full Of Love

Sometimes I don’t know the words. I see my grandsons on Face Time, sleepy beautiful faces in my phone. Wanting to put in their Christmas request: they would like a computer in their room. It has to be fast for interactive gaming.

I welcome this direction. I will be their dancer on a mirror, singing and spinning, a 21st Century Ecstatic Grandmother. Wanting only to be used, to be a part of it.

“Yes,” I agree. “I’ll start searching.”

Among many other things, like golf clubs and kayaks, I get them those “extras” that can be difficult for parents to afford.

It makes me swoon when those two fresh young faces appear on my screen. Live, no less. (I do love technology.)

But the biggest part of me is my heart, swelling. Such blessings as these are mine. Gratitude washes from me in waves that fill the room with light.

This is today. A day full of love.

The Chairs

I have to say

    The Four Agreements

by Don Miguel Ruiz have much of value for me on my spiritual path. I particularly find benefit in the admonition: Don’t take anything personally. Taking things personally has been a huge issue for me.

Case in point: The Chairs

I imagine if my brother or my sister or my Mom were to read these words (The chairs) they would react as I do now, with a sensation of “uh oh” in the pit of my stomach.

What ever possessed any of us three toddlers to try poking a kitchen fork into the vinyl cushions of the kitchen chairs, I cannot recall or even guess. Memory has been blurred by the upset that followed.

I have always maintained my innocence. I didn’t do it. My sis was so little she can’t remember any of it.

We all three got laid bare-ass on the bed and spanked with a leather belt in turn. The wailing was intense. Pop said he wasn’t stopping until someone admitted guilt.

No one admitted guilt.

I was welts from ankles to waist and the blows kept coming, new on top of old.

I begged him to admit it. He said nothing.

It was bad. We had to stay home from school next day, the welts couldn’t all be hidden.

It felt like I was on fire. Meanwhile my father hit us and hit us and hit us.

Finally I said, “Okay okay! I didn’t do it but I’ll admit it if you’ll stop!”

Whew! And just that quickly it was over.

My brother never admitted he did it. Everybody assumes it was me.

Seriously, we’re in our sixties and he’s still letting me take the blame. The Chairs! Ugh.

Was it personal to me? No. He was just protecting himself. But I wonder about the adult.

We grew up and I became rigorously honest; and my bro? He became a liar. Famously so.

And, I took it personally. ‘You shit, I thought, you let us get beaten almost bloody so you could “pretend” you were innocent!” Some big brother!

None of which was really about me. It was all “by, for and about” him.

He never set out to hurt me.

Through experience I have determined resentment has a bitter after taste.

I think I’ll pass.

Anybody Know?

When you’re concerned about Pain Management, I assume you have suffered some kind of damage that requires attention. What my doctors have typically done as PM for me was to give me narcotics and send me to physical therapy.

Physical Therapy is a good and pleasant thing but it doesn’t take away the reality of my calcifying spine, so it offers me only temporary relief. Narcotics did really help. However my tolerance was getting way too high. I just went through an unpleasant detox to get off of them. But that was it: drugs and physical therapy.

Only when those measures became ineffective did they look closely into the problem. in 2013 looking closely means they get the MRI. And then they act surprised to find a longterm problem that could have been fixed long ago. How much pain do I have to endure before you people will take a look and see what’s going on?

Doctors to druggists this is the insurance companies, denying us good treatment by limiting our doctors options.

Or, I have shitty doctors. This is highly possible. They have all missed the boat one way or another:

– Moise dismissed my scar tissue pain, which Dr. Soto fixed handily with trigger point injections. – Sealy put me on the pain patch.

Bunch of bozos.

Okay so maybe I have the worst medical team on the planet. Hell I don’t know. What would happen in, say France? I wonder. Anybody know?

How Blessed Can You Be? )Life-Savers, final)

The next person who saved my life was my Physiatrist. I call her my Polio Doctor because she has taken an interest in caring for Polio survivors. When it was time for me to take a disability separation I chose instead to take a demotion and keep working. She told me it was an ethical problem for her to continue helping me to hurt myself. I agreed the next time I was unable to work, I was done.

I agreed and promptly forgot all about it. So a month later when I once again needed a Doctor’ note for time off, she faxed a note to the prison that said, “This employee is totally and permanently disabled from all work.” And that was that.

Almost too late. I was completely exhausted. It was months before I even began to recover. I had pushed myself too far, and would have continued that way until I dropped. She made a decision my ego wouldn’t let me make. My ego wanted to continue to be a leader in the agency. I had the first slot at the academy, then the whole second week. I had worked on my ego sufficiently that my classes were a joy to teach and I was the favorite instructor of the whole training academy that lasted a month. It was like I was finally making progress in my mission to transform corrections. Mentally I was just getting into a comfortable stride. My body just couldn’t keep up.

When I had to stop working it crushed my mission. I tried many times to give those trainings away, but nobody could figure out what I was doing. Something in my presence with attendees.

“There’s some way you’re being with them and none of us can do it,” Kevin said. Even Sue. My partner and a superior trainer. She watched over and over but whenever i asked her are you ready to present them she just shook her head and said, “No.” Seven years later they are still calling me with questions, trying to figure it out.

It wasn’t magic. Fact is I was in the Introduction Leader’s Program at Landmark Education. Yes the thing that used to be EST. It should be accredited as a Philosophy elective.

I loved digging into the corrections research and hooked up with a global group of professionals, academics and researchers all working on my mission which was also their mission: to transform corrections from the current Waste Management Model to a more humane and integrated approach based on what we know works. I was not alone. I had found my people. I had management’s ear. I was at Headquarters … occasionally. I was part of the Classification Unit, the place I wanted to work from the first time I was over there.

For years I heard the. Classification Unit referred to as the Think Tank. And it seemed like all the strangest people worked there, geniuses and misfits. My kind of place. And I got there! On my first day Jim put his arm around my shoulder and said, “You’re safe now. I’ve got your back.”

I was right where I had always wanted to be, and I loved it. But my body was taking a beating. Who knew Polio still had some punches left.

And I got sick. At first I thought it was just being out of shape, so I put a 40 lb. backpack on and hiked up Mt. Adams with Richard and Kate. I made it to about 9,000 ft. But at Killen Creek meadow I sat down and stayed down for the rest of the day and night.

The hike went like this: Richard and Kate were always way ahead of me. I was trudging and grinding my way up the trail. Every so often I’d catch up with the two of them taking a break. But as soon as they saw me, they got up and started up the trail. I got no breaks.

Not only that, but I had also unwittingly initiated a big burnout of my beleaguered nervous system. I missed several weeks of work and the search for the diagnosis began. 1993. That diagnosis would take five years to get.

I thought I might make it to 62, but I was done at 57. But I’m alive and as well as I can be and Dr. Moise saved me from doing more damage. Thank you, Doc.

My next life-saver was the HR person who spoke this “Oh. By the way as I was leaving the building for the last time. “No matter what they say, if you work you’ll lose your insurance.” Big lifesaver!!! Thank you HR person. You were a life-saver.

I got sober in 1989 in Tri-Cities. Shorty Hofstedt was my sponsor. He told everybody I was so scared, I came to my first meeting drunk. Which is true. I needed a drink to get my courage up. Then I sat by an old guy, thinking that would be safe. That old guy was Shorty. Shorty knew Dr. Bob and Bill W.

I was only the second woman he had ever sponsored. We were both named Rose. I loved him. May he rest in peace. He was a pillar and an elder of AA. He never cut me any slack. Thanks, Shorty. You were my Life-Saver.

Finally, my husband is a life-saver. He has signed on for every minute of every day, there beside me, there to protect and care for me, and when possible have fun together. Thanks, Richard. You are my Life-Saver and my best friend.

How blessed can you be!?!

In search of a great neurosurgeon

I need a excellent neurosurgeon to do the endoscopy on my spinal stenosis. I have a strong constitution in a weak set of bones. I know now I was born with the spina bifida. My discs were shot before I was 35, so my low back was fused. This left me with a low back so absolutely plumb that the rest of my back had to twist to fit, and my neck has never stopped getting painfully out of alignment since. It was the headache that sent me to the doctor in 1993. They guessed, wrongly that I had a brain tumor and I ended up at the neurologist who promptly ordered an MRI.

The Radiologist called to check because the order said possible tumor but the pictures said MS. Shit I thought, two neurological disorders in one lifetime? That seems like a lot. Hey guys, I had polio when I was five. Could that have something to do with it? Nobody knew.

I’ll never forget the spinal tap that boob did on me. Go right back to full activity he said, and I did. And soon I had a leak. And that headache is right up there with the worst migraine or neck related headaches I have ever had.

My brother Vince couldn’t believe he didn’t tell me to rest for a few days. I was going in for a blood patch a week or so later when it finally closed on its own.

That experience soured me on neurologists.

That Radiologist had never seen Polio or he wouldn’t have mistaken it for MS. Polio damage is limited to the brain stem. Dr. Moise knew that. She told me it meant I had both Polio Encephalitis and Paralytic Polio.

The good news is I didn’t have Bulbar Polio, which was the strain that attacked the lungs, causing the majority of fatalities. The reality is you need a minimum of 35-40% of your lung capacity to survive. You gotta keep breathing.

Walking not so much. I was paralyzed and I had encephalitis too, but my lungs are unscarred. You see there is always something to be grateful for.

Besides throwing the rest of my back out of alignment, the surgery left a knot of scar tissue that felt like being stabbed with a knitting needle. One physical therapist used deep massage on the knot. When it let go out came memories from having polio. Tears flowed. I reconnected with my sister and my mother on a deeper level. And I learned things that helped me heal by releasing wrong ideas I had as a little girl, and the emotional pain inside of being hospitalized for months.

And let’s not forget the cruelty of the nuns. The hospital staff were terrified of catching it. We were quarantined in the hospital. Staff were masked in my room. They had no intention of opening their mouths to speak and they were in a hurry. So any delay while I asked begged sobbed or screamed kicked and demanded my Mommy was met with swift justice. They’d pick me up and toss me on my stomach. Then came the impatient overly rough administration of suppositories. I tell you for me it was a rape-like experience.

But when I got out of isolation after three weeks alone and one of semi-isolation, I thought I would finally get to see my Mommy. I was devastated. I cried for hours until the nun told me if I continued to act like a baby, they would treat me like a baby and put me in a crib.

Under threat of humiliation I choked back my tears. Mightily I resisted the sobs and the tears. Again and again those waves of sorrow drowned me, and then they brought out an old enamel crib. Ancient even in 1954. Thin iron bars painted white. Up went the sides.

And as if that wasn’t humiliation enough for a five year old, they wheeled it out into the center of the ward and set it there as if on display. Indeed I have no doubt the other children were warned to behave or face a similar fate.

When at last my mother appeared she got right on it. “She’s a big girl! Why is she in a crib?” She demanded to know. The nuns promptly lied. They told my Mom it was to keep me at rest.

After a while they released me to a single bed. By then I was in a wheelchair. I learned to read in that crib.

The wheelchair was such freedom after the crib! Every evening after lights out, when the nuns were gone, I made my rounds. I adjusted pillows, I washed hair, I combed hair. I carried water. I loved every minute!

So after being born with defects in skeleton, Polio, fusion, scar tissue … On to the next thing: spinal stenosis.

So now I need a great neurosurgeon.