Saturday, June 30, 2007

Gregory Hennick/Insulin Pump Update

I promised an update on the Gregory Hennick situation (the Massachusetts man who wasn't allowed to be become a police officer because he is a diabetic who uses an insulin pump).

I almost missed this article reading the morning paper today, but here's the latest: after consulting with physicians, officials have decided to end the former (illogical and unfair) policy and will now review each applicant based on the severity of the disease, not simply whether or not that applicant chooses to use a pump to control his/her diabetes.

Thursday, June 28, 2007

Most. Humiliating. Experience. Ever.

“Oh, hey, good luck with that phlegm.” (Said in the most insincere, mocking way imaginable.)

“Thanks a lot, jerk.” (Said in most indignant, shocked way imaginable).

And with those parting words at baggage claim, thus ended the most humiliating, awful experience I’ve ever had in terms of being a patient. Even several days later, my face flushes in anger and my heart rate quickens a bit.

Let me start at the beginning. My husband and I were returning from a weekend trip, a Thursday night to Sunday affair. We brought The Vest with us, as we always do, and we brought it as a carry-on item, as we always do. It cost nearly twenty thousand dollars, so we’ve never wanted it rolling around underneath the plane, and we’ve never had trouble stowing it above us. This time, our plane was a tiny commuter plane, the kind with only about 20 rows and midget-sized overhead compartments. The gate attendant Thursday night said our backpack might not fit overhead (which it did) but that The Vest would.

It didn’t. So we stowed in beneath our feet and while it did protrude about an inch or so, I still had room for my feet and the flight attendants made no mention of it. We did the same thing Sunday, figuring on the same airline and on the same type of plane, what passed muster Thursday would be okay Sunday.

It wasn’t. I should also add that by the time we were on board and stowing carry-on luggage, the plane had already been delayed by 35 minutes and we were still third in line for take-off. The flight attendant and a customer service rep told us that it wasn’t far enough under the seat and we’d have to check it. My husband asked if it would be insured if we placed it underneath the plane and something happened to it. We were told that it wouldn’t be because it wasn’t checked originally, and that we should have made alternate plans if we wanted it insured. We pointed out that we would have made other plans if we hadn’t thought we could bring it on the plane the same way we just had days earlier, but handed it over anyway.

The whole exchange lasted about three or four minutes. People on the plane were getting antsy—one man even pointed to his watch and said he had places to be—and I don’t blame them, but it was the airline’s inconsistency that caused the problem. I was mortified and really self-conscious the whole flight, even though we were still delayed several minutes while the backlog of planes in front of us departed and all of that had nothing to do with our four-minute exchange. Still, the whole plane knew I had a piece of medical equipment that needed to be moved, and that’s the kind of public notice I don’t like.

I had recovered by the time we were at baggage check. In fact, I was resting on a bench when I saw a man approach my husband and get in his face. Seriously. In his face.

“Hey buddy, we’re cool. It’s cool. I mean, I got my car towed because you wouldn’t check your bag, but really, it’s ok,” he said, shouting.

Because I am a hot head and because I didn’t like this guy yelling at my husband, I got in the middle of them. They were going back and forth, the guy (who was there to pick up his girlfriend) screaming that we should have made other plans and John explaining that the 35-minute delay prior to boarding is what made us late.

“You don’t know anything about our situation. We were allowed to bring it on the other day. It only took a few minutes to check it, and we were still third in line for departure, so it didn’t make a bit of difference in terms of when we took off,” I said.

John chimed in with, “It’s an expensive piece of medical equipment that helps keep my wife alive. It keeps her from drowning in her phlegm.”

“I’m sorry to hear that,” the guy said. For a second, I thought he meant it. “But hey buddy, say my girlfriend has a health problem, I wouldn’t be able to take her to the hospital because my car got towed. If I hadn’t been waiting twenty minutes, I’d have a car, but it’s cool, I mean as long as you feel you don’t need to check your bag.”

“Wait, you parked your car in a tow zone and left it alone for twenty minutes and it’s our fault you got towed?” John asked incredulously. (At that precise moment, the airport security message warning that all unattended vehicles would be ticketed and towed immediately came on. It was too perfect.) “The plane was late before we even boarded it, so don’t put that on us. And don’t park in an illegal area and leave your car alone and then scream at me for it!” John added, motioning in the air towards the intercom.

All three of us went back and forth a bit longer, voices raised and faces red. When the guy finally walked away and spat at me“Good luck with that phlegm” several times, very loudly and meanly, I was shaking. Literally every muscle in my body was quivering, not from anger but because no one had ever made me feel so terrible. The way he yelled it at me in front of so many people basically felt like he was saying, “Die for all I care, my car got towed.”

I sat down on the baggage claim carousel to steady myself.

I regret so many things about that whole incident: I regret the airline’s inconsistency put us in the position of risking a twenty-thousand dollar piece of medical equipment. I regret that both of us lost our cool and raised our voices in response to this guy, something I have never done in public and hope to never repeat again. And I really regret that after everything I’ve seen and done, some jerk still had the power to make me feel like my existence was so inconvenient and worthless.

And I will never, ever fly on a certain airline named after the fourth Greek letter again!

Monday, June 18, 2007

On Fathers and Memories...

We went for a walk around my neighborhood and got lost.

I was three, and that's what I remember as my earliest and most vivid memory of my paternal grandfather. Someone found us eventually, of course, and I was too young to really piece together that it was odd that a grown-up who’d visited my house for years would get both of us lost on a simple Sunday afternoon stroll. He was in his late fifties.

I was about five when the phone calls from my grandmother started coming with increased urgency: My grandfather had wandered out the front door again. He stepped onto a bus and wound up in the next city. A neighbor found him disoriented, standing near the corner shop. Sometimes, the searches went into the night, and she’d return in the dark, hugging and kissing him, fighting back tears. If she turned her back for a second—to take a quick shower, to cook dinner, to answer the phone—he could slip away.

He was a proud Marine who spent four years fighting in the Pacific during WWII; when he was lucid, he was just as proud and determined as he’d always been.

Soon after, I heard the word “Alzheimer’s” peppered in my parents’ conversations more and more. I didn’t know what it meant, but I knew each time I saw my grandfather, he talked less and less. Smiled less and less. Interacted less and less. I wasn’t scared of him exactly, but I was confused. I didn’t know how to reach him anymore.

No one did.

When his needs became too great and the amount of care he needed was more than any one human--however loving and devoted--could provide, he went into a nursing home. He was fairly young at the time, not much older than my own father is now, and his life was slowing reversing itself. He sat motionless in bed and our regular visits bore witness to each new loss: he no longer spoke. He no longer had the spark of recognition in his eyes he used to have even when words failed him. He no longer had the ability to control his bowels, or eventually, to feed himself.

My grandmother took the bus to visit him every day. My father took us often; what I remember most are his tears as he stroked the forehead of the man who no longer recognized his oldest son.

My grandfather died when I was a freshman in high school. He was buried on my fifteenth birthday, the same morning the bomb exploded in Oklahoma City. He was buried in Marine tradition; dress blues and taps and a gun salute accompanied his casket.

He died in 1995, but we lost him long before that. My father had grieved each loss for so many years that he said he’d already said goodbye to his father a hundred times over. I cried during the funeral, but I wasn’t crying for the man I would miss—Alzheimer’s had taken away any real relationship I could have had. I cried for all the things he’d missed and would cotinue to miss, the memories robbed: the high school graduations, the college ceremonies, the weddings and baptisms. Education was the most important thing to him—he stood over my father’s shoulder each night, making sure he didn’t take his Boston Latin school education for granted—and with each academic milestone we passed, my father would well up and say, “Your grandfather would have been so proud. He lived for this.”

Last week, Newsweek highlighted the challenges of caring for Alzheimer’s patients and predicted how huge an issue the disease would become in the next several decades. It brought back a flood of memories for me and an appreciation of what my grandmother and her children went through caring for my grandfather I couldn’t have had as a child or even a teenager.

I am so used to the physical aspects of giving and receiving care for chronic conditions—getting ice for someone, doing errands, asking for help carrying things. I have seen the way the body can be ravaged by disease and because I am used to it, I do not fear it too much.

But I cannot think of anything more terrifying than losing your memories, of words and names and faces slipping away day by day, of spiraling into a black hole of confusion so profound that by the time the body’s functions begin to systematically break apart, the mind isn’t even aware. Towards the end, the pain is even greater for the living, I think, for people like my grandmother who can only hold a cold, clenched hand in their own and remember what it was like to feel love from their own beloved.

For Father’s Day, my husband and I scanned three hundred pictures and created a DVD of them for my father. It meant so much to him, but we all benefited. I watched the photos from the early years flash across the screen—my grandfather holding me above a birthday cake, my grandfather in the middle of all of us cousins on Christmas, my grandparents with their arms around each other, smiling. You could see his gaze grow more vacant through the years, but he was there.

“Pictures are such great sources of memories because you never take them when you are angry or sad, they are usually so happy,” my mother said. She was right, but I loved these pictures the most because through them, I saw that he did know me once. He did hug me and hold me and say my name. We did have a relationship, if briefly.

And for however sick my father is, I am unspeakably grateful that at the same age his own father started growing blank and withdrawn, his mind is strong, clear, and sharp. He will continue to make memories—and keep them.

Thursday, June 07, 2007

Stranger than Fiction

Given my journalism background and current state of intense nonfiction book writing, I sometimes forget I applied and entered my MFA program as a fiction writer. I haven’t had much chance to indulge in novels lately—whenever I am not writing my book I am researching material for it—and miss the crafty details, the intricate plot lines, and imaginative twists and turns.

Life, however, never fails to give me fodder.

The truth is often stranger than fiction, and all I can say is that I couldn’t make this stuff up, and if I did, no one would take me seriously.

Last week, my grandmother had a series of strokes. This alone is a decidedly serious, difficult, and emotionally draining situation and worthy of its own post (forthcoming). But things are never that singularly difficult in my family. Thankfully, my (severely arthritic and debilitated) mother and my (walking disaster of medical conditions and recent cardiac surgery patient) father were on Cape Cod with her when it happened and could take her to the hospital.

Clearly this was a stressful time, especially for my grandmother and my parents. They spent hours in the ER, waited for multiple tests, and got the grim, scary news that she has a large brain aneurysm. Thus the whole rehab-nursing home machine began churning.

Enter the ridiculousness. The week before, my father got a sunburn on the top of his foot. By the time he was at the ER with my grandmother, he could barely stand on it. Whether it’s because he’s been an insulin-dependent diabetic for twenty years and doesn’t heal fast or because he’s predisposed to infections as a result of his immunosuppressive meds and chemo or just terrible luck, the sunburn turned into a staph infection and cellulitis.

After IV treatment, my mother brought him to their vacation house to rest and quickly returned to the hospital to be with my grandmother. They had to leave his car at the hospital and my mother, whose shoulders aren’t up to lots of driving, did all of the ferrying back and forth.

And then their land line shorted and they had no dial tone. My father had dropped his cell phone in the ocean the weekend before so he didn't have one. My mother had forgotten her charger and her cell phone was dead. Because the phone line was faulty, the security system went haywire and kept beeping.

And then my father realized he couldn’t rely on his his crutches because his arm muscles were too weak from his polymyositis. This meant he couldn’t get up to use the restroom or get any food, and my mother couldn't help him when she was home because her back was too unstable. I should add there wasn’t any food in the house anyway since my parents hadn’t expected to stay through the weekend.

Just to recap: a temporarily immobile diabetic with a potentially life-threatening infection was alone in a house with no viable way to communicate with the outside world and no access to food should he become low.

Did I mention the heavy rains caused the basement to flood?

“Can you come down and get your father lunch?” my mother asked in her harried state, really asking for so much more.

So I packed up my clothes, medicines, The Vest, and the dog and took off for the two-hour drive. For the next couple of days, I shuttled between my grandmother’s room in the stroke wing and the outpatient clinic where my father had to return each day…all of which wouldn’t be all that ridiculous except for the fact that the humid weather made my congestion a lot worse so pushing my father’s wheelchair while juggling my bag, my laptop, and his briefcase was a scene of its own.

The only things that saved us all was the fact that we never lost our electricity during the thunderstorms—my dad could watch TV since he couldn’t do anything else, I could plug in my Vest and hope it worked since I forgot to pack my nebulizer, and when my mother returned home from her long days, she could use her heating pad…and the fact that after a lifetime of illness, we weren’t derailed by it all.

“That’s just the way you guys roll,” my physical therapist said when I summed up my tale.

We both laughed. It sure is.
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