When John Wayne rode the wastes of the wild west dispensing justice from the barrel of a six-gun and duking it out with the baddies, he wasn’t behind the wheel of a minivan.

When John McClane refused to die easy and saved the Nakatomi Plaza from a band of Eurotrash terrorists, he didn’t do it from the spacious third-row seating of a minivan.

When I save my family from starvation, brave the elements to secure an education or simply battle the hordes of road-raged drivers seeing my face in the center of a bulls-eye, I do drive a minivan.

This disparity in style often led my 15-year-old son, Hyper Lad, to comment. Vehemently.

“I am not getting in that minivan,” he said, looking in disgust at the newest decoration to adorn my beloved Honda Odyssey. “You put reindeer antlers and a big, red nose on it.”

That is exactly what I had done. It was Christmas. Seeing the other cars similarly decorated, I went red and green with envy. I had a bad case of Antler Envy and the only cure was more . . . antlers.

“Hey,” I said, shoving him toward the open sliding door to the spacious captain’s chairs in the middle row of the minivan. “I’ve seen plenty of cars with these.”

“Yeah,” he said, tossing his backpack onto the floor. “And every one of them lady cars, right?”

“Uh. . .”

“Right?”

“No,” I said. “Not right. I mean, I saw — just the other morning — I saw antlers and a big, red nose on a huge Chevy Suburban, and that’s a rough and tumble car.”

He snorted and slid closed the side door.

“Oh, please,” he said. “That’s not a Suburban; that’s a Mom-burban. The only people who drive them are Moms.”

If only my son could take to school with the alacrity he brings to inventing new vocabulary for mocking me. I let him get away with it mostly because I usually find it funny, I know he is only doing it in friendly jest, and I want him to be able to stand up for himself. I do, on occasion, regret this.

“Okay, fine, yes,” I said. “There was a lady driving, but that still doesn’t mean putting antlers on my car makes me any less a man.”

“You’re right,” he said. “It makes you more of a mom.”

Regret is a stinging blade to the mind. I threw the Odyssey into reverse, slammed my foot on the accelerator and left a smoking trail in my imaginary driveway.

While Hyper Lad and I had been kidding around, the comments still stung. The average American male, of which I’m almost certainly one, does not like being called a woman.

I’ve come to believe an idea not making sense tends to spread it faster. It’s certainly helped spread this one.

In just under half a second, Google returned more than 550 million, that’s 500,000,000, links related to “women weak.” Half a billion links to the assumption that women are weak in general and weaker than men, more specifically. This presumption that women are weak is tied very closely with why you won’t find many American men taking on traditionally female attributes.

A man being told that he “throws like a girl” is one of the worst kinds of insults, despite the amazing arms on just about any girl who plays softball.

Because women are assumed the “weaker sex,” most men will fight anyone or anything linking them to femininity. It’s not that they don’t want to be seen as women, but they don’t want to be seen as weak. And women are seen as weak.

Researcher Brené Brown, in one of the most-ever-watched TED talks, said women feel shame from a multitude of sources and for a similar multitude of reasons. Men? Not so much.

For men, shame is not a bunch of competing, conflicting expectations. Shame is one, do not be perceived as what? Weak. I did not interview men for the first four years of my study. And it wasn’t until a man looked at me one day after a book signing, said, “I love what you have to say about shame, I’m curious why you didn’t mention men.” And I said, “I don’t study men.” And he said, “That’s convenient.” (Laughter) And I said, “Why?” And he said, “Because you say to reach out, tell our story, be vulnerable. But you see those books you just signed for my wife and my three daughters?” I said, “Yeah.” “They’d rather me die on top of my white horse than watch me fall down. When we reach out and be vulnerable we get the shit beat out of us.

For any ladies reading this, please understand that the gentleman in this story was not exaggerating. Sometimes it happens metaphorically, but sometimes it happens literally. Men have been trained to fear showing emotion and to respond to that fear by lashing out. We lash out to prove that we, unlike that crying girlie-man over there, aren’t weak.

The easiest way of making sure we aren’t seen as weak, is to make sure we’re never thought of as a woman. So no helping with the housework, or rearing the kids, cooking dinner each night, decorating your minivan for the season, or wearing clothing associated with females.

That’s changed somewhat for women. They wear traditionally male clothing, such as trousers, suits, ties and the like, raising nary an eyebrow. In this one area, when it concerns women taking on formerly male-exclusive dress and behavior, they are far more advanced than men.

Don’t believe me? When was the last time you saw a woman wearing pants? Yesterday? Today? Okay, when was the last time you saw a man wearing a skirt? Go ahead. Try and remember. I’ll wait. While waiting, I’m gonna watch some fine British comedy, which consists of mediocre skits performed by men wearing dresses and talking in a high, warbly voice. It’s hilarious.

Yeah. That’s what I thought. Men don’t get to wear anything associated with women unless they want to be thought of as a weak sort of man, almost a wo-man. If you will.

And woe betide any straight man who gets it into his fool head he wants to wear female clothing for anything other than bad sketch comedy. Including cross dressers, but that’s a different column. I know this from experience.

I am not immune to the fear of being seen as weak. The thing of it is, though, I’ve grown a pretty thick skin over the years because of what I do for a living.

If it wasn’t obvious from the fact that I drive a minivan, I was and am a proud stay-at-home dad. All three of our boys grew up knowing that when they skinned a knee, it would be dad who yelled at them to rub some dirt on it and get back into the game.

Things in our house were. . . different.

Because their mom worked so much as an obstetrician/gynecologist, she wasn’t able to participate in many of the boys’ school events. For the most part, they were okay with it. They knew their mom loved them and would have been there if she could. But not every time and not for every son. There were times when I had to step up. In her high heels. Metaphorically speaking. Sort of.

When Hyper Lad was younger, his pre-school decided to hold a Mother-Son Breakfast. It was expected that every child’s mother would be there, as this was a conservative church-sponsored school and women just did not work outside the house. So, it was assumed, they could be counted upon to appear at the breakfast.  Unfortunately, Hyper Lad’s mom already had a surgery scheduled for that day and couldn’t postpone it.

Hyper Lad was crushed. I got an idea. An awful idea. I got a wonderful, awful idea. I ran into my closet and began rooting around behind the dress shirts I no longer wore and the shiny shoes gathering dust while I traipsed around in trainers.

I scrounged up an old wig, with long, very fake brown hair, a pair of scrubs too big for my wife, and a towel with elastic around one side I could pretend was a skirt. I was ready. I could only hope the world was as well.

It wasn’t.

Because he was still in pre-school, Hyper Lad didn’t have the stamina nor leg length to outrun me. I quickly caught him, bundled him in the Odyssey’s predecessor, a Toyota Sienna, and headed to school.

I will admit it. I’m a rabble rouser. An inciter. I was, thus, in my element. The ladies, dressed in their nicest outfits, many with pearls, stopped to stare as I pulled Hyper Lad into the room. I quickly nabbed a name tag from the deathly silent assistant (HI! I’m Not Hyper Lad’s MOM) and headed to the buffet.

Eventually, conversation restarted and breakfast was eaten. Well, eaten by the kids. Most of the ladies didn’t often eat in public. I didn’t have that problem. One mom I’d been friendly with sidled over and stood nearby. No one else had joined our table.

“Oh my God,” she stage whispered. “Oh my God! Are you wearing a skirt?”

I looked down at the wearable towel wrapped around my waist and gestured toward it with the hand not currently occupied by shoveling bacon into my churning maw.

“This old thing?” I asked. “Can you believe? I got it for half off!”

She stared at me.

“It’s a towel,” I said. “I couldn’t find a skirt that fit.”

“A skirt that fit? A real skirt?”

“Yeah,” I said. “But it’s rough. I’m in between sizes in most skirts.”

“Aren’t you afraid people will think you’re a woman?” she said, lowering her voice even more and leaning in closer, “You’ll be lucky if any of the other ladies talk to you after this.”

I did my best not to laugh too much. Mostly because the bacon was really good and I didn’t want to waste any.

“Do I look like a woman?”

I did not. I’m six feet, weigh near two hundred pounds and have a muscular physique. I’m also bald and bearded. I look like many things. A woman least among them.

But I got her point. I had stepped outside the traditional boundaries of the American male. I had, even if only for a morning, and mostly for fun, embraced my more feminine side. Which wasn’t really a problem. No, the problem was I’d had the bad taste to do so in public.

My friend was right, though. Other than the occasional sniff-and-look-away, I didn’t really communicate with any of the other mothers the rest of the year. We moved Hyper Lad to a different pre-school the next year. I think we all were happier.

Here’s the thing, though. I hadn’t changed. I still was the same person; still loved beer, football and screaming at televisions. Yet because I dressed up and pretended — badly — to be a woman, I was ostracized by people I had considered friendly, if not friends.

The stereotypical red-blooded American male, is strong, silentish, rugged, emotionally stunted so that he shows only anger, and sees the world through a friend-or-foe-fueled haze of tactical assumptions. To be otherwise is to be seen as weak.

I challenge that assumption. I’m just about as male as they come. I look the part. I sound the part. But I also cry at sad movies. I hug people who are in bad moods and could use a bit of cheering up. I don’t believe in winning at all costs. And I’m hoping that, by my words and my actions, my sons will come to believe that they don’t have to grow up to become emotionally stunted testosterone junkies.

I’ve always considered women to be strong and capable. For this, I blame my mom, who was both and quite vocal about it. I feel no shame in losing a game of H.O.R.S.E. to a woman who’s simply a better shooter than me. It’s about the ball, not the balls.

Men need to grow up and realize stereotypical behaviors are not predetermined, they are socialized. Raised in a society where masculine emotion is prized, men will cry openly. And they will feel better for it.

Ours is not that society. But it could be. It only needs men, who will become fathers, to understand and to lead the way. Understand that to be a man, to be the best man, is to be hu-man and embrace the full spectrum of behaviors.

But that’s going to be an up-Everest battle.

Even knowing I am the manliest dad by whom he’s ever been reared, my son kept insisting only a mom would decorate a minivan like I had. He wouldn’t let it go. Eventually, I stopped listening to him. Whenever he brought it up, I either flexed my arms, made some pretty impressive muscles, and growled or lovingly smacked the back of his head.

Yes, I am a man. Thankfully, I’m strong enough in that knowledge that I can survive being seen as weak. As the great philosopher once said with such flair, to be the man, you gotta beat the man. And, man, I am the man.

Even behind the wheel of a minivan.

My mom died. This is the story of what happened. The first part of the story is here. My sister and I tried to get a battered Mom into a rehabilitation hospital. All Mom had to do was swallow, prove she was on the mend. She didn't because she wasn't.

The weasels running Mom’s care at the hospital began feeling their oats, thinking we’d have to give in to what they wanted since Mom wasn’t going to a rehabilitation hospital. Barely paying attention to us, they started making plans for when to begin tubing Mom.

Throughout the course of living with multiple sclerosis for decades, Mom always made it clear that her worst nightmare was being kept alive and not living. The weasel doctors didn’t like the idea of anyone dying in their hospital so they planned to ignore the legal Do Not Resuscitate order mom signed and notarized before she was even sick.

I looked at the smug, white-coated weasels and thought beating some sense into them using an IV stand and several applications of the chest paddles sounded mighty sensible.

“It doesn’t matter,” my younger sister Leslie said, her voice soft and sad and barely audible over the sound of my heart raging out of control. It was the tone that jolted me into dropping the IV stand.

I looked at Leslie. She looked at Mom, her eyes full of tears, already dripping down her cheek. My sister, for a long time, was one of the most-sought-after physical therapists in the Dallas-Fort Worth metro area. She was damn good, even after cutting back her practice since moving to Jacksonville several years before. I’m smart. I know a bit about medicine and science. She knew more. A lot more.

“I knew,” she said. “But I ignored it. She can’t swallow on her own.”

“But, what if—“

“Rick, it doesn’t matter,” she said, turning away from Mom and looking back to me. “It never mattered. Without an NG tube she’s going to die of starvation, but you know we can’t do that.”

I nodded. I’d never liked it, but there it was. I wanted to fight against it, keep Mom around just a little while longer. . . Leslie was right.

“Even with all the help in the world, she’s not coming back. Not like she was,” Leslie said. “If the tubes worked and she did come back? Like that?  Being a vegetable? It was her nightmare.”

I sat down. My sister and I had never been particularly huggy, but I leaned in and gathered her in my arms.

“Damn,” I said to no one in particular.

Walking to the door, we leaned out and asked the Hospice liaison to come in. Leslie and I walked to Mom’s bed, each on a different side. We each held a separate hand. We stood quietly.

Mom slept.

Hospice Offers Love In A Time Without Hope

Hospice is a wonderful invention. It is a place and a service designed to ease the suffering of those about to shuffle off this mortal coil. For those choosing to meet their end at home, hospice offers home visits, caregiver respites and even full-time help. For those who — like Mom — need more looking after, Haven Hospice in Gainesville offered a beautiful, wooded grounds as a last residence. The large, wooden building, full of expansive windows and sitting on manicured ground, sat surrounded by tall pines and oak trees, many of the branches a little bare from the mild Florida winter.

I hated it the minute I saw it.

It was the end. Haven Hospice represented the death of hope. Mom wouldn’t be getting better. She wouldn’t come home. She’d never again take over a dull party and make it a thing talked about for years after.

It was the end. And it was coming soon.

The party started almost as soon as we arrived. Word spread around the Gainesville community pretty quickly about Mom’s situation. It seemed like everyone she knew wanted to come say hello, did so and then stayed to talk to everyone else.

Nodding to Leslie, I slipped out the door and into the quiet hallway outside Mom’s room. I needed a break from the chatter. My ears ringing in the silence, I leaned against the wall.

Dr. Carter, a loud, funny and very caring black woman, her hair done in a tight natural cut close to her head, leaned next to me. Dr Carter tried to make sure Mom wasn’t feeling any pain, but also that she wasn’t so medicated she slept the days away. It was a delicate balancing act and one she seemed to be slipping. All too often, Mom grimaced and thrashed on the bed, her body letting her know she’d overstayed her welcome.

We’d ask for more drugs and more drugs would be given, but we were coming close to where any larger dose would end up being lethal. Hospice was for comfortably seeing folks off, not for pushing them.

“Sounds like a party in there,” she said.

“Of course,” I said. “It’s Mom.”

Dr. Carter nodded her head and looked thoughtful.

“Your mom, she liked parties?”

I smiled, far too many memories flashing into existence for me to make much sense of them. The overwhelming impression was of laughter and sweat and constant motion.

“Oh, yeah,” I said. “She loved parties. Never wanted to leave them.”

Dr. Carter nodded her head again, watching me from over the thick, bright-red frames of her glasses.

“Yeah,” she said. “Sounds like quite a party in there.”

I’ve been called slow on occasion, but I get there eventually.

My heart thumped on the missed beat and my eyes widened. We — Leslie and I and every person we allowed to come into Mom’s room for the floating party — were responsible for keeping Mom around when it was time to go. We were the reason she still was here and in pain.

“Fuck,” I whispered.

“Yeah,” Dr. Carter said. She pushed off the wall and walked away.

Turn Out The Lights. . . 

That night, after visiting hours, we hammered out a new policy. We’d still welcome people who wanted to come say goodbye to Mom, but not more than three other people. No loud noises. No party.

Mom needed to know she could — at last — stop fighting. She could give that one inch.

That Friday night, Leslie went to get a Coke from the vending machine while I stayed with Mom. We’d both be going back to Mom’s house for a some sleep, maybe a couple of hours, getting ready for the long day ahead. We couldn’t stand the thought of being away, of letting Mom die alone and lonely.

“Hey, Mom,” I said, holding her left hand cupped in both of mine. I squeezed lightly. I didn’t know if she was awake or even capable of being awake any more, but I had to believe she could hear me, had to believe she wasn’t gone. “You did a damn good job with me and Leslie, you know. I’m not sure I told you that enough. You’ve been teaching us all our lives. Every moment a teachable moment, even if you never said a word. I know you don’t like hearing it, but you were an inspiration. Your courage. Your fight. Your refusal to ever give in. It made you damn annoying at times, but right now, I’m so glad you were like that because it means I got to keep you for longer.

“But you taught me, taught Leslie, too well for us to be selfish. No matter how much we want you to stay, we can’t hold you back. We will miss you, but we will be all right. You taught us to laugh and how to fight, but there’s one last lesson we need from you.

“Teach us how to let go.”

Down by eight, the Florida Gators looked primed to make a comeback against the Kentucky Wildcats. Mom loved basketball and had season tickets to both the men’s and women’s Gator home games. The only thing she hated worse than the Kentucky Wildcats basketball team was seeing her Gators lose to Kentucky.

I’d been talking softly with Mom about the game, my attention only half on the television as the game neared halftime. Something sounded off. I looked around the room, trying to figure out what it was when Mom started breathing again.

“Leslie, Kathy, come here, please.” That my voice sounded calm and I didn’t shriek at all is a testament to either my acting skills or the positive benefits of shock.

Leslie and Kathy had been talking quietly near the room’s closed door, making plans for later that night so we could get something good to eat. Neither of them liked Gator basketball half as much as I did and weren’t even in the same galactic cluster with Mom.

Gentle laughter floated my way as they walked over. Mom kept breathing, but slower, deeper. I looked at them and my mask slipped. The blood fled their faces, leaving behind pale cheeks and wide eyes. They stood close to Mom, without having covered the intervening distance, bending down near Mom’s mouth. She breathed deeper again. I saw Kathy’s and Leslie’s body relax a little.

“No,” I said. “That’s not it. She’s breathing now, but I—“

As if on cue, Mom exhaled. She didn’t inhale for maybe five seconds, then started up again. Her breathing seemed even deeper.

Kathy, a nurse, nodded through fresh tears.

“Cheyne-Stokes breathing,” she said. “Fuck.”

Cheyne-Stokes breathing was something that happened in a lot of near-death patients. Their breathing would get deeper, followed by periods of no breathing, then get shallower with more periods of not breathing. Eventually their breathing wouldn’t restart. No one knows why it happens, only that, when it does, the end is near.

I grabbed Mom’s hand tight in both of mine, my nose burning with the need to sob and wail, tears rolling across the bridge of my nose and off the tip. I looked at Leslie, holding Mom’s right hand. Kathy gently rubbed Mom’s temples, occasionally running her fingers through Mom’s hair.

“It’s okay, Mom,” Leslie said. “We’re here. We’re with you. You’ve done so much for us, for us all. You made sure we were ready for this. You did. Rick and I. . . We’re going to be okay. Pieter and Nico and Sophie are going to be well.”

Leslie nodded at me. I couldn’t open my mouth, couldn’t speak. Couldn’t— No. I was the son of Catherine Jones and if there was one thing I’d learned from her, it was how to talk loudly and clearly.

“We will be all right, Mom,” I said. “Alyse and the boys — Rich, Ben, Rocket — they’ll be all right, too. You’ve got another party to get to and you don’t want to be late.”

“It’s okay, Mom,” Leslie said. “It’s okay to let go now. Stop fighting. Relax.”

“The world. . .,” I said. “The world is a better place for your having been here, Mom.”

We babbled, making sure our voices were heard, that she didn’t go in to that last dark without company.

Mom inhaled, exhaled, inhaled, exhaled. . .

And stopped.

We all held still, listening for breathing, watching her still chest.

I broke first, the sobs crashing through me as I bent over the bed and held the still, already cooling body that used to be my Mom. I don’t know how long we cried, Leslie and I, but eventually we slowed, stopped, sat up.

Kathy wasn’t in the room with us. She must have gone to tell Hospice staff what happened because, after we’d been quiet for a few minutes, the door inched open and one of the wonderful nurses poked her head in.

“May I. . .,” she asked. “I just need to check a few things, if that’s all right?”

“Please,” I said, taking a step further toward the foot of the bed, gently releasing the body’s hand and placing it on the covers. Already the room seemed empty, boring.

I walked around the bed and stood next to Leslie. We watched the nurse check for breathing, heartbeat, any sign of life. There were none, but I could have told her that. What was on the bed. . . That wasn’t Mom. That was just the body that had been fighting her for most of her life. She wasn’t there any more.

I don’t believe in heaven or life after death, but I very much wanted to. I wanted to believe that somewhere under a golden sun, Mom was looking down at two strong, young legs and wondering why she wasn’t dancing yet. I wanted to believe that she was smiling and laughing and jumping and running just for the sheer joy of it all. Because she could. She finally could. I really wanted to believe and, for a while at least, I did.

Bad News Never Gets Easier To Tell

We couldn’t put it off any longer. It was time to tell our respective kids.

We walked past the nurse’s station where two nurses, one male and one female leaned against the counter, gesturing angrily but quietly at a small color television hidden between stacks of paper.

Two steps past the nurse’s station, I twigged to what I’d heard.

I stopped, a giggle forcing itself through my pressed-tight lips. I felt another bubbling up behind that one and a whole lot more not even waiting their turn behind that one. I gasped for breath, but finally managed to tell Leslie.

A deep belly laugh ripped free from the pit of her. Both hands slammed over her mouth, her eyes open wide. Somehow that made it even funnier and more giggling burst through, which set Leslie off again.

My wife, Alyse, and Leslie’s husband, Pieter, both poked their heads out of the family TV room. They walked out, closed the door and headed our way, questions tattooed on their faces.

We wound down, occasional chuckles floating up every five seconds or so.

Alyse and Pieter stood a few feet away, obviously wondering if they needed to call for help.

I stood up straight as my stomach muscles would allow, harrumphing a bit to cover the wince.

Leslie had straightened and now stood next to me. Even then, my body aching from the laughter, I saw the coming tears far too clearly. We’d speak. They’d listen. We’d cry. And then we’d go find the kids and would start all over again.

But that was minutes away.

“What is wrong with you two?” Alyse asked.

“The Gators,” I said. “They lost to Kentucky 68 to 76.”

Leslie and I both chuckled.

I watched as comprehension flashed through Alyse’s face. She got it.

“When. . .?”

“Just after halftime,” I said.

“I am so, so sorry,” she said, collapsing into my arms. I felt her tears, hot and wet, against my neck. The breath of her laughter on my wet neck wrung goosebumps from my skin.

Behind me, I heard Leslie say, “Mom’s gone, Pieter.”

“But, I don’t. . . Oh,” he said, his light Dutch accent rolling the I sound around a bit before letting it go. “She always said she’d rather die than watch Kentucky beat Florida.”

A woman of her word to the end.

Damn it.

***

I’ll be back. Be good to yourselves.

From across the open, glass-walled atrium, sitting in a large, but strangely uncomfortable chair, I watched the door across the hallway open. My heart tried to beat faster, but couldn’t work up the enthusiasm.

A large woman wearing white backed into the hallway, her feet encased in white canvas-and-rubber shoes that squeaked every single time she took a step on one of the institutional white tiles lining the corridor that separated the family waiting room from the now-open door.  After one long step, she turned left and I saw she was towing what turned out to be a metal stretcher.

Formed of shiny metal and well-oiled, squeak-free wheels, the stretcher normally carried a thin, plastic-encased mattress and several starched, white sheets. I’d seen the stretcher and the woman go into the room just a few minutes before. I couldn’t say I watched it because that would have implied some conscious decision on my part and that. . . Well, that just wasn’t happening.

Thoughts skittered through my brain, none sticking around. I existed in the moment, seeing whatever was in front, sounds and smells that drifted by, but all of it in and gone.

Unable to muster the enthusiasm to look away, I saw the large woman extract the stretcher from the room, a second similarly white-clad woman following behind, her right hand guiding the stretcher into the hallway.

On the stretcher, a rumpled white sheet pulled up to just beneath the chin, rested a still, small woman. Despite the face being uncovered, the woman on the stretcher was very clearly dead.

Moving efficiently, the two women wheeled the stretcher and its contents away down the hall and around the corner.

It came to me that the body on the stretcher had been my mom.

Not every story has a happy ending. In this special two-part memory, I talk about the sudden death of my mother. And the way my sister and I killed her.

A Multiple Sclerosis Diagnosis Was Just The Beginning

Diagnosed more than three decades before with multiple sclerosis, Mom fought throughout most of her life. Multiple sclerosis is a degenerative disease that wore away at the neurons in her body, robbing her tactile sensations, stealing away her strength, and, most noticeably, the ability to move her right leg.

The good thing about Mom’s version of MS — if there can be said to be any good thing about the disease — was that it was only gradually eating away at her body’s nerves. It progressed inexorably over the years, but slowly, prolonging the time she had to fight, but also the time she had with us and we with her.

Mom developed simple way of dealing with MS. She fought against it with every single minute particle of her will and strength and anger. She did not give an inch. She knew that, if she gave that first inch, the next would be given easier, and the next one even easier than that. She gave the disease nothing.

Everything MS took from her, it fought, snuck or tore away. She never gave an inch.

When she was diagnosed with an aggressive, fast-moving form of breast cancer, she faced it down like she did MS. She underwent chemo, a mastectomy and accepted her body for what it was.

She gave a breast, but she never gave an inch.

If you didn’t like her, you probably hadn’t met her. Because once you met her, you really had no choice but to like her. Mom’s personality filled every single room she entered. She loved to be around people, to talk to people and she was damned sure not going to let MS keep her from doing that.

We all — including the seventeen people who would later tell me she was their best friend — felt the impact of her personality. She was ten feet tall and bulletproof. And that was before she started drinking the tequila.

In life, she was a big, friendly giant.

In death, she was a tiny lump on a very large stretcher.

Death Makes Everything Smaller

I turned, realizing my butt had already fallen asleep in the two-seater couch, and put my arm around my sister. We leaned together, my bald head nearly bouncing off the thick head of hair framing her blotchy face.

“We. . .,” I said. “We did the right thing. Didn’t we?”

Leslie, only eighteen months younger than my 46 years, had born the brunt of the last month since she lived an hour away.

She wiped at her face and leaned back, wincing.

“Of course we did,” she said. “Besides, if we hadn’t let her die, she’d have killed us both for it.”

She Meant Every Word

“I want you to know something,” Mom said. She looked up from her seat at the kitchen table. Tired couldn’t begin to describe her. Deep half-circles of purple weighed heavily under her eyes, the result of forcing herself out of bed every morning despite not sleeping the night before. “If you ever find me dead. . . If I ever commit suicide, I want you to know it had nothing to do with you or your sister. Or even your dad, the shit. I shouldn’t say things like that about him, but I— If I do commit suicide, it’ll be because I’ve just had enough of this damn disease. Nobody else. Just the MS.”

I’d nodded, leaned down to hug her briefly and asked if there was anything I could do. She smiled and waved me on my way. It was summer and the Fretz Park Pool was calling my name.

Although she’d never come out and said it so bluntly before, that wasn’t the first time Mom had brought that up to me or Leslie. Looking back, I can see she was having an especially rough summer, even on top of my dad leaving her for the first time. They would get back together after a year or so, stay together for another couple of years and finally divorce after my dad walked out yet again, this time for only one other woman. The Dallas heat and the emotional pain made it harder to deal with her MS.

Suicide was her escape hatch from a burden too heavy to bear. It wasn’t the pain that worried her. It was the helplessness.

Her greatest fear — the thing that woke her up some nights in a cold sweat — was the thought she would become so weak she’d need full-time care. So weak she’d have to be dressed, changed, wiped. If she couldn’t take care of herself, she said, then she’d take care of herself, if we knew what she meant.

We did.

What Finally Got Her In The End

Mom lived in a single-floor home in Gainesville, FL, with her two cats, both rescued from the shelter. Those cats were part of the daily test she set for herself. She fed and watered them, and changed their litter box. They gave her another reason to fight. She loved them and they loved her.

And they killed her.

Pasteurella multocida is a Gram-negative, nonmotile, penicillin-sensitive coccobacillus found in most domestic housecoat claws. It’s not a big deal, normally. Most folks with a healthy immune system can easily fight off the bacteria.

MS is an autoimmune disorder that causes the body’s own white blood cells, which fight infection, to turn on the insulating lining of nerve cells. People with MS are immune compromised. They do not have a healthy immune system.

When Mom passed out in the bathroom on Feb. 02, 2011, she fell and got stuck between the toilet and the wall. Trapped there for most of a day, she couldn’t escape or call for help. Eventually, she was found by my grandmother and her helper who were worried when they hadn’t heard from Mom all day.

They patched her bruises and cuts, gave her some fluids and helped her to bed. The next day, they forced her to go to the hospital to be examined. The doctors immediately demanded she stay overnight, to be rehydrated and, maybe, other things depending on test results.

I talked to Mom that night. Scarlett called me from the hallway where my mom rested on a stretcher, waiting for a room. Scarlett filled me in on the fall, the toilet and the hospital. My mom, true to form, hadn’t wanted to worry anyone so hadn’t told anyone.

Other than her head and neck hurting from the fall, she said, she felt fine. She didn’t sound fine. She sounded loopy. Still, I attributed that to her being dehydrated. I said I loved her. She said she loved me. We hung up.

That night, Mom fell into her first coma.

I arrived from Charlotte, NC, around two am that night. The first of many trips from here to there I would make that month.

The doctors stashed Mom in intensive care, wired her up to a Frankensteinian tangle of wires, tubes and monitors that went beep. The medical establishment offered no indication of what was causing her coma, how long it might last or if she would come out of it at all.

Leslie and I agreed to testing, but stressed Mom’s desire for no heroic measures. Despite numerous tests, doctors stayed baffled. They flooded her system with powerful, broad-spectrum antibiotics on the theory of “What the hell, it can’t hurt.”

Four days after Mom fell into her coma, as Leslie and I were discussing when we might have to leave, what kind of set up we could put into place, we walked into Mom’s hospital room to keep talking to her, trying to engage her and bring her back.

Instead, we opened the door and found Mom sitting up in bed, eating.

She Saw Us, Smiled And Said, “Well, Hey There!”

It was the most normal-sounding thing in the world. She sounded like she’d just woken up in her own bed and was surprised to see my sister and I just wander into her room for no apparent reason.

It was the best and most coherent she would sound for the rest of her life.

The doctors had finally figured out what was going on. Mom had meningitis, an infection of the brain and spinal column. It caused swelling of the area and, left untreated, could cause death. The major symptoms of meningitis are a headache and a stiff, sore neck.

Both of which Mom had, but both of which we attributed to her fall.

The doctors couldn’t figure out what was causing her medical issues because they never thought to look for pasteurella multocida. Why would they? After all, in the history of, well, history, Mom was only the ninth person recorded to have contracted meningitis from pasteurella multocida. So they pumped her full of even more antibiotics and hoped for the best.

Hope, as a medical treatment, stinks on ice.

Mom continued to get worse and the doctors continued to push for more and more intrusive tests and support measures. They wanted a nasogastric (NG) tube to pour nutrition straight into her stomach. They wanted a tube to pump air into her lungs.

Leslie and I leaned on each other and stood firm. No heroic measures. We followed Mom’s DNR (Do Not Resuscitate) and hammered right back at the doctors. They insisted. We said no. They threatened. We said no. They threatened more. We went to get the hospital ombudsman, our patient representative. Then we went over the head of the ward doctors and took our case and the ombudsman to the chief of ICU.

He wouldn’t agree. At which point, I brought out my phone and began dialing the Orlando offices of Sharon Stedman, attorney at law, to discuss our case against the hospital and the chief of ICU in particular.

The shit weasel saw the wisdom of following a previously approved, legally obtained Do Not Resuscitate (DNR) order. And I saw the wisdom of not phoning the attorney. Of course, I did phone the attorney as soon as I left the weasel den. After all, the attorney is my aunt, Mom’s sister, and had been demanding an update on Mom’s condition. Sharon is an attorney, though only works on appeals cases.

Eventually, though, we came to a crossroads. We wanted Mom in a rehabilitation hospital, away from the quacks who wanted to harm her in the name of helping her. Provided Mom could show she was on the mend, that she could swallow her own food, we were golden.

All we needed to get Mom into that rehab hospital was for her to swallow some Jell-O on her own. Just swallow it down. Tasty. Yummmmm.

Mom failed the swallow test. And failed again. And again.

More to come tomorrow. Until then, be good to yourselves.