Category Archives: Family

Behind Blue Eyes

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One of my grandmother’s favorite stories is this:

She and my mother were visiting me at my first post-college apartment. Though the apartment itself was a complete dive in that charming, no-heat-and-mice way only 22-year-olds can consider charming, it was located in a hip, swanky neighborhood next door to an even swankier cheese shop. Armed with brie, gouda, and mozzarella, the three of us stood at the cash register, patiently waiting for our change. The man behind that counter happened to be an amateur photographer, and he asked to take our picture.

“Three sets of blue eyes, three faces so similar all lined up. Three generations. You can’t deny genetics,” he said as he snapped away. My grandmother blushed and smiled proudly.

She brought that story up several times over the past five years, always marveling at how strangers knew we were linked to each other by our blue eyes. I always wished I’d stopped back at the cheese shop and asked for a copy.

One of my favorite stories of my grandmother is this: She was babysitting the three of us while my parents were away. It was dusk on a cold February night and my brothers were playing street hockey. She and I were in the living room, each holding a thick hardcover book on our laps, completely engrossed. For different reasons, we’d both turned to books at early ages and had never let them go.I looked up and saw we were sitting with our legs crossed the same way on each end of the ottoman, our toes tapping along to the music from the Bose stereo in perfect synchrony. We spent an hour like that, never speaking.

Of the three of us, my grandmother’s eyes are the bluest. A piercing blue, not in an icy or severe way but in an intensely expressive one. My mother buys her Talbots sweaters in all shades of blue—turquoise, periwinkle, navy, royal—to bring out the color in her eyes. Now, in her blue and green johnny and flanked by a blue curtain cordoning off her hospital bed, her blue eyes are startling, especially against her pale face.

My grandmother has always been an intensely private person, and her story will remain private here. I will say, though, that from her earliest years she experienced profound losses, the kind of life-defining losses that either shut you down altogether or recast the boundaries of your survival. She didn’t shut down.

She is reserved but not shy, and her face reveals the depth of expressions she otherwise keeps to herself. A life of the eyebrow, a narrowing of the eyelid, a widening between the lashes, a crinkling at the corners—in a glance, dismay, skepticism, joy, whatever she is feeling, is evident. We often tease her about her “drop dead” look, a glance so fierce and penetrating that as children, we only needed to see it for a second to stop whatever we were doing that she found unacceptable. She can still stop my mother in her tracks with it.

Some say I have inherited that look. My husband will have to confirm this.

After the first stroke, she seemed smaller and frailer. Her eyes seemed bluer. She could speak in coherent sentences, but you could see the strain to locate the right words in her face. She scrunched it up, as if so to say to us, “Do you know how annoying this is?” But she talked, nodding emphatically in the right places and following up with questions of her own. We brought her books and magazines, but for the first time in her reading life, they were left untouched.

The human brain is an uncanny captor. After the second stoke this week, she lost the use of her right side. She cannot speak, but expends huge amounts of effort trying to make herself understood. She shook her left fist in frustration today. “I’m not going anywhere. It’s okay. You can take your time and try again,” I told her. And softer, so my mother did not hear, “Don’t be scared.”

She nodded slightly.

“Every time I see you, Dolls, your eyes are bluer than ever.” I started saying this, using her nickname, in the hospital this summer and then it became our little thing—every visit to the rehab and the nursing home began with it. I tell her this again today, and she blinks at me. She knows.

She no longer has the ability to swallow and cannot take anything, even juice, by mouth, because she aspirates it. If you cannot swallow and you have put in writing you do not want a G-tube, suddenly the timeframe and the options available in it are much smaller.

So it is a period of difficult decision-making, and we talk about what is going on in front of her. He brain will not allow her to swallow or speak, but it allows her to know what is going on. I’m not sure if that is better or worse, because the things we say are frank.

I kissed her head and told her I will be back tomorrow. “I love you,” I said. She met my eyes and held my gaze. “I know,” she told me without saying a word.

On Fathers and Memories…

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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.

Stranger than Fiction

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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.

Timing (Sweet) Timing

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Can I just say that my timing has always been….ironic? No less than three hours after I posted my last entry on worrying about my father’s health and the general nuttiness that consumes my mind, my phone rang.

“Your father’s [thallium stress] test went badly. The artery they stented in August is 100% blocked again and he’s being admitted,” my mother said.

Cue pit falling in stomach and tears welling in eyes. Not again.

Thus began several days of waiting, waiting to see if he would need a triple bypass surgery or if they could re-stent his major artery and leave the other four blockages alone for now. Either way, he’d need the dreaded dye for the catheterization, and his one little kidney still hadn’t recovered from August’s trauma.

Are you freakin’ kidding me? First of all, the man had done everything right: his cholesterol was the lowest it had ever been, he exercised regularly, faithfully took all his meds and statins, even dropped down to a four-day work week since the August scare. All that, and we were told that 95% of the time, stents lasted a lifetime. Of course the man with one kidney and a billion other medical problems was in the 5% of patients whose stents failed within months.

Secondly, what are the chances that the very day I write a post that talks about his health and my tendency to be a little overbearing and obsessive about it he gets this news?

In high school, after eight months of rehab from ankle surgery I made the JV basketball team (and yes, there were in fact cuts!). The day before my first game, I caught the ball awkwardly and because my bones are like twigs, I broke my hand. End of season. In grad school, shortly after I finally recovered from the one-two punch of whooping cough and viral pneumonia, my adrenal system failed. All this happened just as I was settling into the weekend job I adored at the Devon Nicole House at Children’s Hospital—and these are just the first instances to pop into my head.

My father’s timing is even more ridiculous. I could write pages about it, so I’ll just focus on recent events. In August, he got chest pains just after the ferry departed from Hyannis to Martha’s Vineyard, making for a long, harrowing ride. Last week, he felt short of breath and tired again, just as he was about to get on a plane and fly to DC and then Florida for conferences he’d looked forward to all year, events he was leading and presentations he’d labored over. Instead of going to the airport, he went to his doctor.

But there is a first time for everything, and my father’s catheterization Tuesday went better than best case scenario. I can’t even believe I just wrote that in conjunction with him. Better. Than. Best. Case. Scenario. They didn’t need to do the triple bypass, and they used so little dye during the cath itself they could re-stent it then and there, something no one thought they’d be able to do.

Feels too good to be true, but as each day goes by, we’re believing it more and more and we’re inspired by it.

During the long days in the hospital this week, I thought a lot about what I’d write here. I kept coming back to my last post and how my worries and actual events collided like that. It was tempting to bemoan our collective timing yet again, but something stopped me. My father was alive, and a lot of steps went into that process.

He was a ticking time bomb for months, walking around with a major artery 100% blocked and not realizing his stent failed. He was about to fly all over the country. What if he’d had another heart attack and this time it was on the plane? Or in a hospital far away where no one understood his beyond complex medical history? What if he hadn’t called his doctor exactly when he did and hadn’t been able to squeeze in the stress test?

His timing was pitch-perfect.

The more I think about all the near-misses, the plans gone awry and the events missed at the last second, I realize just how much timing impacts my life, our lives. Illness is never convenient and disappointments are frequent, but we’ve made it this far. I wouldn’t change our timing by one second.

Who Me, Worry?

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“If I stopped and worried about everything that’s wrong with me, all the possible complications and outcomes, I’d never make it through the day. So I don’t. For better or worse, I just push through it,” my father said recently.

For the record, the man is a walking catastrophe: he’s diabetic, he’s lost a kidney to cancer, he’s had a heart attack and stents implanted. Oh, and he has a really rare connective tissue disease (polymyositis). So it really would take him all day to dwell on what ails him if he were so inclined.

“I know you know what I mean, Laurie,” he said.

Of course I knew what he meant, because I follow the same rules. This is not to say I don’t think about my health in the same way he has to on a daily basis, but thinking and worrying are two very different things.

He thinks about what he eats and thinks about his insulin. He thinks about how much exercise he needs to fit in and thinks about when to take his medication, but these types of thoughts are more rote procedure than anything particularly emotional or intellectual. I think about what time my chest PT is when I’m making plans, I think about taking certain meds on an empty stomach and others after I’ve eaten, and I think about what I’m buying at the grocery store in case I can’t find a parking spot and have to carry the bags too far. Nowhere in these deliberations does worry play a role.

Now, I’ve already admitted that I am somewhat of a control freak, something that bears mention in this conversation. I fully admit to being obsessive about certain parts of my life: making the bed, de-cluttering the coffee table, listening to certain music when I am writing, doing exercises at the gym in a particular order, etc. (Are you scared yet?)

I don’t obsess or worry about my health like that, though. Sure, I have moments where I’m genuinely scared or I wonder what it will be like 10, 20, or 30 years from now. Who doesn’t? But day to day, I don’t worry. I just do what I need to do and live my life, accommodating illness when I have to and defying it whenever possible.

But here’s the kicker: I worry about my father’s health. A lot. More than we each worry about our own combined. I inquire about his liver function often since the chemotherapy he takes is hard on the liver. I always ask for his latest cholesterol readings. I feel like there are so many moving parts involved in keeping him healthy (ish) and alive and I fear someone will drop one of them. I stress over his kidney function results, and spiral into a chain of what-if’s: Diabetes stresses the kidneys. He’s had it for over twenty years and he only has one kidney to begin with. The dye he needs for his heart catheterizations, angioplasties, and stents also stresses the kidneys, and he’s needed two rounds of the dye lately. What if he needs a transplant? Would he even be eligible, given his other serious conditions? Would his body be able to stand it if we found him a kidney?

“You can have one of my kidneys. If I’m a match, it’s yours. In a heartbeat,” I’ve told several times. Usually these offers of organs have no sequitor, and I get a lot of strange looks.

He always tells me not to worry so much, assures me that he is okay. But every now and then, he admits to the reality of his situation, and that actually reassures me. There is such a fine line between pushing along and getting through each day and plain old denial, and while I completely relate to his desire to just move forward and not focus on what’s wrong, I also think it’s important to acknowledge the long-term consequences…not enough to be dominated by them, but just enough to take them into consideration in the present, like when he’s trying to balance his blood sugars or trying to squeeze in exercise.

In the end, I think this goes back to my need for control. I take my meds, I follow my regimen, and though in the end I can’t always control what my body does, I feel better knowing at least I have all the moving parts accounted for. With my father, control of his health is one more step removed from me, and because I care about him so much, I want to be the one to keep it all together.

I’ve promised him I won’t worry quite so much, but I’m not sure he really believes this will happen. After all, as my father, he faces the same challenge in terms of worrying about me no matter how much I assure him I am fine…so I guess we both need to follow each other’s advice.

New Year’s Anniversaries

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For a long time, the holiday season was more than simply a time to decorate the house, see lots of family and friends, and engage in all the rituals and traditions we hold dear. It was also synonymous with being in the hospital—for seven out of the last eight years, I’ve spent either Thanksgiving and Christmas or the days before and after them in the dreary world of the hospital.

Between end-of-semester craziness, grueling hours, all the associated extras of this time of year, and the infections and viruses that go hand in hand with the colder months, I didn’t stand a chance of getting an infection and not ending up in the ER or the inpatient floor.

While Christmas and Thanksgiving and all the time in between are marked by illness, New Year’s has started to take on much more positive associations for me. Three years ago on New Year’s Eve, I met the man who would become my husband. (See the article about this published in the Boston Globe Magazine here). With that meeting, my life began to turn around. Right round the same time, I was diagnosed with PCD and celiac disease, started my daily chest PT and rigorous new medication regimen, and finally began to fully understand why I had always been so sick. Just as my medical history finally started to make sense and I was on the right track in terms of establishing some stability, my love life fell into place as well.

Since then, New Year’s Eve has been much more meaningful to me—I’ve always hated the stupid hats, noisemakers, and inevitably disappointing parties that symbolize typical New Year’s revelry. But now it’s the anniversary of when I met John and stands for the period in my life when things started to change for the better in every sense—which, by the way, is no coincidence.

Every New Year’s since then I try to build on that sense of renewal and hope and try to build on the gains in my health (and my relationship and professional life) that I started to accumulate three years ago.

Last New Year’s Day I needed to go to the hospital. However, unlike most of the trips of my holiday past, I was only there overnight. This New Year’s was a huge milestone for me because it marked exactly one year since I’ve needed to be hospitalized for respiratory problems. Sure, I’ve had plenty of nasty infections, lots of bad days, and new complications. But I’ve been able to maintain a stable prognosis for 12 months, something I haven’t been able to say in more than a decade—here’s hoping 2007 continues the trend.

For all you chronic people out there, no matter what your goals for 2007 are in terms of maintaining your best health, lots of luck!

Family Traditions

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I just got back from spending Christmas with my in-laws in Michigan. It was a wonderful trip—we visited with relatives we don’t see much, we ate lots of good food, and we spent time just relaxing and catching up with my husband’s parents and family.

It was the first Christmas I didn’t spend with my side of the family, and the differences were compelling. Of course, there were obvious ones: Christmas Eve was much quieter and peaceful than the boisterous, crowded Italian Christmas Eves of my past. There was no spaghetti, meatballs, or traditional fish dishes, but there were plenty of delicious roasts, potatoes, and desserts like apple crisp. Instead of the frenzied gift exchange, we opened our gifts one by one; instead of Midnight Mass, we went to a 5pm Lutheran service—and I loved every second of it, just like I love the traditions I’ve known since childhood.

Over the course of the four days, I couldn’t help noticing lots of other fundamental differences, namely that for the first time in my life, I saw what a healthy Christmas looked like for a healthy family.

My mother-in-law cooked meal after meal, and was able to chop, mix, scrub, and lift. Between her spine problems, reconstructed shoulders, and bone-crushing degenerative joint disease and advanced rheumatoid arthritis, my mother hasn’t been able to do any of these things in such a long time. My father-in-law spent time clearing brush in the backyard, moving large limbs and getting his hands dirty. When he was done, he went on a walk with us and then helped vacuum the living room. Between his muscle disease and his heart problems, the weakness, pain, and fatigue that physical exertion often causes my father means he can’t do things he’d like to do, like putter in his own backyard, move things for my mother, or run to the grocery store without paying for it later.

I wasn’t used to long car rides or shopping trips that didn’t translate into a day’s recuperation, or how getting the house ready for company didn’t mean being in so much pain afterwards that sitting up seems like a monumental effort. I wasn’t used to not having to build in extra time to recover from tasks, or not worrying that a family party would do more harm than benefit to my parents. There was no nausea from chemotherapy, no heating pads or ice packs to procure, no last minute prescriptions to pick up at Walgreens, no stress or frustration or struggle.

In essence, I wasn’t used to daily tasks and holiday preparations being so effortless, to life being so calm and even keel. And in the middle of all the celebration and tradition, I felt a twinge of sadness for the family I left in Boston. They would trade all the Christmas gifts in the world for one day of living like this, and for everything they do have—joy, love, support, friends, etc—this is the one gift they will never have. They don’t resent or lament that, but once I saw what it could be like, once I saw how the healthy lived, I couldn’t help but wish for it for them.

Mourning Thoughts

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I found out last night that the father of a friend of mine died suddenly the other night. Obviously all death is tragic, but there is something especially unsettling about unexpected death—the lack of warning, of preparation, the inability to say all the things we’d say if we had the chance.

Naturally, this terribly sad news made me think of my own father, currently in the midst of a flare-up of his polymyositis and still trying to improve his renal function. He has flirted with death more times than I care to elaborate, and when I consider the many life-threatening conditions he’s battled for so many years, I can’t help but wonder just how much more his body can take.

For people whose lives are dominated by chronic illness, sudden death is so disconcerting because it flies in the face of all the things we do each day for our health. I’ve watched my father test his blood sugar, inject himself with insulin, endure the nausea and ill effects of chemotherapy, and work against the pain and fatigue of muscle disease for years. I’ve picked up his blood pressure, gout, and cholesterol medications from the drug store, and I’ve visited him in the cardiac unit after his catheterizations, angioplasties, and stent insertions. All the things he does to stay alive could wind up becoming his entire life, if he let them.

And all the things he does for his health reassure me that he, that we, have some control over what happens, that if we plan and dose and medicate and recuperate, we can keep death at bay and our bodies can keep bouncing back. Sudden illness and death is so scary for that exact reason, because it defies planning or preparation or proactive approaches. But perhaps the day to day grind of chronic illness, the whispers and tuggings that our conditions bring into our lives, can also combat that most sober of reminders.

No matter how short or trivial the conversation may be, I never hang up with my father (or my mother, husband, or brothers) without saying “I love you”. I do this not because I am thinking catastrophically that it could be the last time we speak, but because I have learned not to take anything for granted—illness as well as health.