February in Pittsburgh

I once lived in a Holiday Inn in Pittsburgh for almost a month.

It was one of our first experiments in homeschool travel. It was our first year homeschooling our kids, and we'd bought lessons from a private school rather than try to create our own. The power plant that employs my husband was building a new unit with technology that was new to them. A company in Pittsburgh had such a unit, so the company sent personnel out to Pennsylvania to take classes and observe. My husband had already spent a week there months earlier. They didn't have the guys room together in standard rooms, but booked each man into a mini suite, with a refrigerator, microwave and sleeper sofa. When they sent him out a second time, for much longer, I thought: I'm self employed, and the kids can do their schoolwork anywhere. So, we bought plane tickets to go join Dad for the month.

My son, daughter and I flew out several days after my husband left. All I had was an address and a MapQuest set of directions to get me from the airport to my destination. We landed at about 5:00 p.m. I had neglected to take into account the fact that I was going night blind, and I'd be driving in the dark. In a rental car. On unfamiliar roads. In a snow storm. I warned my 12 year old and 8 year old - "Do not talk to me. Do not make any noise. Do not annoy each other." It speaks of either their consideration or of their terror of dying a fiery death that there wasn't a peep out of them for the entire 45 minute drive.

I don't recall much in the way of signs of civilization on the highway while driving toward the city. I did go through several unmanned toll booths, stressing out that I had run out of change by the last one. ("Which route did you take?" my husband asked. "I don't remember any toll booths." "I don't know! I just drove where the computer told me to.")

I will never forget my first look at the city. I'd been driving through dark, rural areas when I hit a tunnel. I drove along, not thinking much of it. When I came out the other side, it was the visual equivalent of being in a quiet, dark theater, then having the entire orchestra simultaneously play a crescendo. WAAAHHH! There was the skyline, bright and glittering, and very close, just across the river. It was beautiful and disorienting. I wanted to stop, look, maybe take photos, but I couldn't.

After taking my turn and eventually finding myself in a quieter area, I crawled down a snow covered road, following the instructions I had. I phoned my husband on the cell phone: "Are you in a Holiday Inn?"

"Yep."

"I'm in the parking lot."

This is what the view from our window looked like on most days:

The little red car on the right is our rental, Red.

My mother had always told me that we desert dwellers didn't really understand cold, didn't know what humidity does to the cold. I dismissed that thought. We lived less than an hour from the site of the 1960 Winter Olympics, for goodness sake. We understood cold! We laughed at wimpy California transplants who couldn't take it.

Then I experienced Pennsylvania in February.

OH. MY. We were now the wimps, running from heated buildings to the heated car as fast as we could. There was no sledding, no hiking, and very little outdoor photography. We did something we hardly ever do - took photos through windows.

We'd never experienced an ice storm, where rain falls as liquid, but freezes as soon as it touches anything solid.

We had to chip our way into our car. I'd never seen anything like it.

Mostly, we settled into a comfortable rhythm. In the morning, the kids and I headed out to explore while their dad went to work. We visited almost every museum and historic site in a 45 mile radius. Then, we'd head back to the hotel to do schoolwork in the afternoon, and maybe swim in the indoor, heated pool. When Dan came home, we'd have dinner, then settle in to watch TV or head out to shop or play indoors. On weekends, Dan joined us while we explored yet more museums and historic sites.

We're museum groupies; we were in heaven.

It was so cold that the zoo moved a large number of the animals indoors - the elephants, apes, reptiles, anything not equipped to deal with the cold. Yes, those are lions, African beasts, still outside in the snow.

We explored Fort Pitt, the aviary, the parks, and spent more time than we normally would have at the mall.

We discovered that Pennsylvanians were used to indoor recreation in the winter. In the mall there were indoor playgrounds and mini golf.

Everything looked so different than it does at home; the stone buildings older than my state, the row houses, the ice, the piles of salt spread across the road.

This isn't even a creek or waterfall, it's just an ordinary hillside along the road. That much water habitually weeping out of the ground is profoundly foreign to desert folk.

This is apparently one of the iconic shots of Pittsburgh. We saw postcards and posters taken from this same spot, only in the summertime.

We ate often at the Ponderosa Steak House. We liked the food, and it was amusing that we lived, at home, less than an hour away from the actual site of the Ponderosa Ranch, but we didn't have any of the chain restaurants named after it. Plus, they had Family Nights with free balloons and face painting.

I am not prone to homesickness, but I started being more excited than usual to see places that reminded me of home on TV. Even the California coast looked like "home," its being a familiar place (and only a few hours drive from our house.) Still, our first foray into "travel schooling" proved to be a resounding success.

We're all agreed that one day, though, we need to go back to Pittsburgh - in warmer weather.

Documentation

Our society places an inordinate importance on official documentation of all kinds. Want to travel? You need a passport. What's being taught in schools? Show me the standardized test scores.

Of course, not everything boils down to what can be seen on a piece of paper.

My father's death certificate actually tells you very little about his death.

My dad was a private trap shooting coach. One day, he left as normal to go to the gun club, about 20 minutes away. My mom was working in the garden, as she did every day. Dad came out to let her know he was headed to the gun club. "OK. See you later," Mom said. It was all very ordinary.

At the gun club, it was also very ordinary. He watched his students, chatted with friends. His students say that he suddenly put his hand to his temple and said, "Oh!" Then he collapsed. Someone called 911. One of his students, Heather, acted quickly and tirelessly, giving him CPR until emergency crews arrived. She managed to get his heart started again, but he needed artificial respiration.

At the hospital, they continued to try to revive him, but he'd had a massive stroke. He was pronounced brain dead.

They had him in the ICU, hooked up to a variety of machines, by the time someone phoned my mother.

She knew, all four of the children knew, all our relatives, most of his friends, even casual acquaintances knew that his biggest fear in life was being incapacitated and kept alive by machines. He'd told us all, over and over, never to let that happen.

He'd never put it in writing, though. Luckily, his doctors left the decisions up to my mom. Luckily, we all agreed – Dad had actually died at the gun club. He was already gone. He was 78 years old.

None of the children lived in the same town as my parents at the time. I was the closest, and it would take 3 ½ hours for me to drive there. Some of us, children and spouses, needed to arrange time off from work. The earliest we could all get to Mom was the next day. Mom decided that we needed each other, and should all be in town before they unplugged the machines. She asked the hospital to wait until the next day, to let us all see him if we wanted to. Then, they'd unhook all the machines.

Everyone who wanted to be was let into the ICU, one and two at a time, cousins, aunts, uncles, children and grandchildren. My children were 21 months and 8 months old. For me, seeing him was like seeing a familiar house that no one lives in anymore. He wasn't there.  I wasn't at the hospital when they unhooked him and officially pronounced him dead.

His death certificate lists his place of death as the hospital, of course. It lists his cause of death, rather inexplicably, as cardiac arrest.

I know doctors who are scornful of cardiac arrest as a cause of death, or a diagnosis of any kind. "It's like saying that someone died from abdominal pain. It's a symptom, not a cause." It's apparently a catch-all fall back to say, "Well, yup, obviously the heart stopped." Even more inexplicably, on Dad's death certificate in the spaces left for other medical conditions, those that were present but not officially the cause of death, the spaces are blank. There's no mention of the stroke that left him brain dead. I have no idea why, but I've wondered more than once if the person who filled out the necessary paperwork was actually familiar with my dad.

When I'm asked about my family history on medical forms, I list stroke as my dad's cause of death. Some day, someone may look at the records and assume that I had it wrong, but I think it's important that my doctors know what actually happened.

My mother died at home, in her own bed, which is an inestimably great thing for her. It meant, though, that the authorities probably had to work a bit harder to document her passing.

The morning that she died, I called the police department's non-emergency number and asked, "What do I do now?" Did I call an ambulance? The coroner? Was there a procedure? What is it? I didn't know.

"We're sending an officer over," she said.

We sat and waited, my middle daughter and I. The house already felt different. Two officers showed up in minutes, arriving in separate cars and conferring for a moment outside before they came up to the door. I wondered if they were steeling themselves for a scene inside; there wasn't going to be one, but they didn't know that.

They were very sweet, but they also had to follow procedure. They couldn't just take our word for who she was. They wanted my mom's ID, but when I said it would be in the pocket of the pants she'd worn the day before, they said they'd get it themselves. They wouldn't let either of us back into Mom's room. I thought that was silly – if we wanted to stage things, we would have already done so.

They closed the door while they checked Mom. "What are they looking for?" Terry wondered.

"Needle marks, bruises, signs of malnutrition," I told her. I knew they were also looking for things like bed sores, urine soaked sheets or clothes, signs of suffocation, wounds – any sign that she had been neglected or a victim of violence – but Terry was upset enough. I wasn't going to say that out loud.

"Oh. They won't find anything like that," Terry said.

"I know, but they don't know that yet. They don't know us from Adam."

They came out and informed us of what we already knew, that it looked as if she had passed away peacefully in her sleep. They phoned the coroner, and made small talk while we waited.

"Was she on any prescription medication?" No. "Any history of heart disease?" No. "Any history of high blood pressure?" No. "Any history of stroke?" No. "Under a doctor's care?" No. She hadn't seen a doctor in 20 years.

After several more of these questions, one officer asked, "How old was she again?"

"83."

"Ma'am," he said, "that's amazing."

"I know! She's amazing."

I predicted that the official cause of death would again be listed as cardiac arrest. It took them almost a month – long after the body had been cremated – to issue a death certificate.

The cause of death is listed as "arteriosclerotic cardiovascular disease."

Well. Really? The space for "interval between onset and death" is blank, because she was never diagnosed with cardiovascular disease or arteriosclerosis. The certificate also indicates that there was no autopsy. Without an autopsy, how do they know what her circulatory system looked like? I'm willing to guess that they took a blood test; maybe it said that she had high cholesterol. Still, it seems a pretty big leap to get from there to deadly cardiovascular disease, and I have no idea whether they did any tests at all.

There are, again, no secondary causes. The form has 3 spaces for, "Conditions if any which gave rise to immediate cause stating the underlying cause last," and one for "Other significant conditions," but all that's listed is the official cause. Since she did not die under supervision by medical personnel, there is no certifying physician. The coroner's office filled out the part that says, "On the basis of examination and/or investigation, in my opinion, death occurred at the time, place and date stated." The official time, of course, is the time the coroner arrived at Mom's house. Even though she was dead for hours before that, she was not officially dead until Someone in Authority was able to Certify it.

In generations past, "old age" was a perfectly acceptable cause of death. History and literature are full of people who are described as dying from old age. Now, though, we find that unsatisfactory and vague. We can't possibly say that advanced age alone is fatal – we want an explanation, darn it. Why is old age fatal?

There are few other ways to explain using 36 letters to say, basically, "cardiac arrest," which basically means, "Yeah, s/he's dead, alright." Using a dart board or Magic 8 Ball also explains it, but not much better.

My teenage son said, "Isn't cardiovascular disease preventable?" He was annoyed that his grandmother's death might possibly have been something she could have postponed longer. (I miss her so much; we all do.) I had to point out, though, that they were just making a best guess. Without an autopsy, no one knows what her arteries, her heart or anything else looks like. More importantly, everyone who has cardiovascular disease wishes that they could live a normal, medication free life and then pass away peacefully in their sleep, at the age of 83. That's pretty much everyone's best case scenario, sick or not.

In fact, knowing that both my parents died painlessly, at places they loved, gives me great hope that I can prevail upon the Almighty for the same for myself. Let me have an ordinary day and pass away quickly, without warning. Ordinary days are what a life is built of.

I won't ever put "old age" as a cause of death on my medical forms when I'm asked how my mother died - but I'll think it.

A Truly Grand Parent

My mother hated crowds and noise. For her, the concept of "crowd" was pretty small, too, encompassing groups that others might deem modest or intimate. When we celebrated my children's birthdays, she would only come celebrate with us if it was just the immediate family. If they were having a party, she would come by earlier that day to drop off a gift and then skip the party. They never felt neglected - they knew how she felt. If she went to the extended family Christmas party (and she didn't always go), she would stay for an hour or less and then slip quietly out without saying goodbye.

It was a big deal, then, when she went with us to Las Vegas for our daughter Terry's college graduation.

Mom had never been to Vegas. For most of her life she'd loved to travel, but at 78 she was frequently in pain and always walked with a cane. She also hated leaving her home and her cat in someone else's care, trusting only my cousin Ted to do a good job.

We offered to fly her there and back, sparing her the experience of a road trip of almost 450 miles one way. Still, she opted for the whole road trip, including the post-graduation trip to Disneyland. She'd be rooming with us, and sharing a bed with our oldest daughter. The kids were thrilled.

The graduation invitations had indicated that the ceremony would be held not at the school, a hotel or an auditorium, but at the Fashion Show Mall. We found that very odd - a mall? Really? Then we attended the rehearsal and saw why. The graduates would enter by being raised up out of the floor in a huge glass sided elevator, then walk down the fashion show catwalk, all the while accompanied by special effects smoke, lights and music. I forget which of my family said it first - "It's a very Vegas graduation."

So there's my elderly mom, surrounded by the regular shoppers, the graduation crowd, and loud rock and roll accompanied by smoke, in the Fashion Show Mall on the Las Vegas Strip. It would not have been unheard of for her to simply flee, but she didn't. She sat through the whole thing.

She also let us take photographs of her afterward. This too was not something she enjoyed. To say that she hated to be photographed is understating things. She would, however, agree to a few on special occasions.

Look at the sheer joy in that photo!

There was no question that she was proud of Terry.

Three years later, when Lana, our oldest, graduated from college in Provo, Utah, it was important to her to have Grandma there. It was even more important because she was getting married the day after graduation.

Again, we offered to fly Mom there and back. This time, it was 560 miles one way. Again, she opted for the road trip and shared hotel, this time sharing a bed with Terry.

She was even slower and in more pain when she walked than she had been for Terry's graduation. Climbing in and out of our Suburban was difficult, painful and laborious, yet she didn't even consider not going.

Take a look at the size of that auditorium, and how high up we were sitting! Still, not a single complaint - not so much as a bad mood from Mom.

After she passed away, Lana found that "I <3 BYU" button in Mom's bedroom.

The graduation was so huge that it spread over 2 days. If you wanted to actually hear your name called and to walk across the stage, you had to attend your department's ceremony the day after the huge commencement.   Mom was in such pain from navigating the campus that she skipped those ceremonies for our son in law (morning) and daughter (afternoon). Even then she didn't complain, but simply said, "If I'm going to be up to all the walking tomorrow, I have to rest today."

Weddings in our temples tend to be small and private, often with only the couple and their witnesses or their immediate family present. Often, even the wedding party is not present for the actual ceremony. The reception tends to be the big event. Sometimes, there's more than one reception, especially if the wedding takes place away from the bride's or groom's home town. I've known couples who've had a wedding luncheon for the family and wedding party after the ceremony, gone on their honeymoon, and then returned to a reception in the bride's home town and one in the groom's home town.

In order to witness the actual wedding ceremony, you need to be an adult member of our church, in good standing, and have received certain ordinances.

Because they've grown up in this culture, my kids have never minded not attending someone's actual wedding, even when they're in the wedding party. They don't mind at all waiting in the waiting room. I fit all the requirements to attend the ceremony, but I've spent many weddings in the waiting room, simply because I'm not immediate family (and the rooms are small). I find that to be normal. Others, though, especially those who aren't members of our church or those who haven't been exposed to LDS weddings, find it very odd and are sometimes quite put out.

Not my mom.

Allow me to digress a bit here for some history. I joined my church, by myself but with my parents' permission, when I was 12. My dad's family was not particularly religious at all. My mom's family was moderately religious; they claimed a denomination, and my mom was baptized as a baby. When my siblings and I were children, we attended church once a year, on Easter, at the Methodist church.

All three of my mother's daughters joined churches that our parents did not attend. It did not bother or fluster Mom in any way. She spent all of my pre-driving years driving me to and from church services and activities. Sometimes, when invited, she'd attend meetings or activities with my sister, with me or even with my cousins. She never felt that anyone, at any church, was trying to convert her, or was judging her, or was expecting her to explain herself. If she had, she would have firmly declined any further invitations. When one of her granddaughters converted to Judaism and married a rabbi, my mother met it with the same acceptance and grace and true happiness for her that she had exhibited when her daughters joined Christian churches.

One of the governing documents of my religion says, "We claim the privilege of worshipping Almighty God according to the dictates of our own conscience, and allow all men the same privilege, let them worship how, where or what they may." I had been taught that precept by example my entire childhood, so when I heard it, I already knew of its validity. Your worship, or lack of it, is between you and God. I am neither of those people. I might admire you, pity you, or be annoyed by you, but it won't affect whether I love you or how I treat you. I learned that first, and best, from my mom.

Mom was not into very existential "there is no right, there is no wrong" philosophies. She was very sure of what she felt was right and what she felt was wrong. She just had no interest in making you agree with her, or even in knowing if you did or not.

I have seen and heard the way some other people react to situations similar to ours. Relatives who can't attend the wedding ceremony are very hurt, feel very left out, and are often vocal. They say things like, "I've waited my whole life to see you walk down the aisle!" and, "Your church can't really care very much about families if they're willing to put them through this kind of pain."

My mom, far from home and in physical pain, didn't even think about complaining. It's not as if she put on a happy face for us and vented to people about how awful and inconsiderate it was after she got back home. Trust me, my mother had no problem being very vocal about her displeasure. She never even considered that the day should be about what she wanted or expected. It was about what Lana and Craig wanted, and she was truly happy for them that they got to have what THEY wanted. She was very, very happy that her presence there that day made her granddaughter happy.

She wore the same dress she'd worn to my wedding 24 years earlier. It matched Lana's wedding colors.

She waited in the waiting room with the younger children during the ceremony. They had loaner wheelchairs, which she accepted after three full days of walking farther than normal, and climbing in and out of our behemoth of a vehicle. After the family photos were taken, a family friend - the closet thing we had to our side of the family being there that day - whisked her off on a tour after hearing that she'd never been in Salt Lake City before. She loved it.

She spent the reception that evening commenting on how happy the couple was, and what a wonderful thing it was for them to have a happy wedding day. She even let us take more photos.

A week later, after their honeymoon, she braved a larger crowd to attend the reception in our home town. Almost all of my side of the family made it there; my sister and her husband drove for 12 hours to attend the reception, then drove 12 hours back home so as not to miss work. My daughter felt very loved.

Some people spend a lot of time talking about tolerance, consideration, kindness and respect. Often, unfortunately, I have observed that what they mean is, "I don't think that you are sending enough of these things my way. You should do better." My mom didn't spend much time talking about such things, or telling us to treat everyone with respect; she just did it. She never said, "So-and-so is just as good as we are, even though his skin is a different color;" she treated So-and-so the same way she treated everyone else. We learned by watching.

So many people don't understand the difference between understanding someone, accepting someone and agreeing with them. They say, "I want your understanding," when what they mean is, "I want you to agree with me." They say, "I just can't accept you because of your belief system," instead of realizing that it's totally possible to accept someone while disagreeing with them. I think I have an easier time navigating those feelings than many people do, because I had such a stellar example.

Just as an aside, the niece I mentioned who married the rabbi - perhaps that's not an entirely accurate way to describe it. The rabbi is a lovely, red haired woman, and as far as I know, they haven't had a ceremony, religious, legal or private. They simply decided to form a family - and so, years ago, I gained a niece, my kids gained a cousin, my mom gained a granddaughter.

(Postscript: four years after this was written, my nieces made it official with a wedding on the beach, attended by their children.)

One of the last pieces of mail my mother got was a card from those nieces, letting her know the gender of the baby they're expecting. "Did you know that Kara and Mari are having a girl?" she excitedly asked Terry that night. She was looking forward to this 5th great-grandchild. None of us are concerned with the biology of this child; she's already ours, and always will be.

I have no idea how my mom felt about many things, including gay marriage. I do know that I was raised to accept others for who they are, not who we want them to be. We do not need to agree to love one another, to treat each other with respect and kindness, and to enjoy each other's company. My mother taught me that. My religion reinforced it. Most of the people I choose to fill my life with embrace it.

Take a look again at the elderly woman in a wheelchair, in front of a building she would never enter. That is the face of religious tolerance. That is the face of someone so secure in her belief system that she didn't need to challenge or argue with anyone. That is the face of love and acceptance. That is the woman who taught me  that to be sure of yourself does not mean belittling or demeaning others.

That is my mom.

Illness, Part 4: Symptoms

I know, usually symptoms are part 1 of an illness. Sometimes the timeline doesn't look quite so neat and organized.

After I had my thyroid removed in August, people said things to me like, "Was it making you just miserable?" Well... yes and no. I was certainly aware that the way I felt was not optimal, but it was very normal for me.

I really didn't care to discuss how I felt, either, as most symptoms were vague sounding and lent themselves to armchair diagnoses, and people telling me what I "should" do.

Take fatigue; it's been one of the overriding symptoms of my body chemistry gone wrong. Still, the fact that my body chemistry might be screwed was the last considered possibility on everyone's mental list.

It wasn't a new or alarming symptom. As a teenager, I never pulled an all-nighter, for any reason. Slumber parties always found me being the first one asleep. One of my childhood best friends had a slumber party at her house with half a dozen girls piled into the living room. The stereo was on, kids were dancing, the popcorn popper was going - and in the middle of it all, I was asleep on the floor. It was always like that. I was usually the last one awake the next morning, too. The other kids found me very odd.

I never understood the reasoning behind staying up late to study for a big test. Staying up late would guarantee me that I would do poorly on a test. I've never been intoxicated, but I completely understand why studies show that drowsy driving is indistinguishable from drunk driving. Being tired means that my thoughts, reactions, understanding of situations, reasoning ability, emotions, co-ordination and recall are all deeply impaired. If I wanted to do well on a test, it was best that I get extra sleep.

I've read that if you need an alarm clock to wake up, you're not getting enough sleep. That never made sense to me. "Your body will automatically wake up when you've had enough sleep to be refreshed," I remember reading. HA! I laughed. Without an alarm, I would routinely sleep 12 hours or more, and I never felt refreshed. Ever.

It's always been worse when I'm sick. A couple of years ago, when I had the flu, my kids left me alone until after 3 in the afternoon, when my son finally decided he'd better wake me up. (I'd gone to bed at 10 the night before.) Still, everyone's more tired when they're sick.

"You're sleeping too much," people said. "Sleep less and you'll feel better." It did no good to say, "No. I won't." I had two choices: feel like a total, barely functional zombie, or be functional.

Mostly, people said, "Lose weight and exercise more. Then you'll feel better." I got tired of explaining that I felt exactly the same when I was 12 years old and (literally) half my current weight (and still my current height). I fell asleep in high school classes (especially right after lunch) more often than I wanted to count. At 18, I once fell asleep at my office job. I was doing better as an adult, despite being heavier, because I no longer saw any possible benefit in pushing until I'm totally exhausted.

"It's just a habit," people said. "Train yourself to expect less sleep, and you'll be fine." Ugh. This, again, ignored the fact that, as a parent, I've had to function for weeks (and months) straight on very little, constantly interrupted sleep. I know what it feels like, and doing that for long periods is dangerous. It can be done, but it's not good for anybody.

It took me years to convince my husband that when we go on vacation, I can do early mornings OR late nights, not both. If I push too hard, I will get sick. "Illness is caused by germs," he'd say. "There's no way this will make you sick." He's one of those people who wants to be the first one in Disneyland for Magic Morning hours, and the last to leave Main Street an hour after the park has officially closed. I can't do that.

"You're imagining things. You think you'll get sick, so you do," people said. I'm not a hysteric or an attention seeker. I've actually had to go to an urgent care facility while on vacation on more than one occasion. I'd SO much rather be doing something else, but I can't. Attending a friend's wedding in Palm Springs in August one year, I contracted such a vicious case of bronchitis that it took 3 full courses of antibiotics to kill, and left me with permanent lung damage. Six years later, in Florida in April, my newly acquired asthma (thank you, aforementioned lung damage) left me unable to breathe and scrambling to procure an inhaler.

We learned to take it easy. Still, a vacation (which I truly enjoy) usually meant that I'd be sick, while still traveling or after returning home. Sometimes, my husband and kids would leave me in a hotel room to sleep all day one day, so that I could resume functioning for the rest of the trip.

Seven weeks after my surgery, we were taking a trip that we'd planned for over a year. It meant hotels in 4 different cities over 12 days, a lot of driving, amusement parks, museums, the zoo, the aquarium, family visits, the beach and the wild animal park, all with my entire immediate family of 7. We weren't sure how I'd feel, so I was prepared to take a day off if I needed it. I didn't.

One of the biggest surprises after the surgery was how I felt. "You'll be completely miserable for about 6 weeks," the surgeon had told me. "Then it'll slowly start to get better." I never got to completely miserable. I went from mildly uncomfortable straight up to better than I'd ever felt. Five days after surgery, I was shooting portraits.

I started waking up five to ten minutes before my alarm went off - not once or twice, but regularly. Once, I woke up a full hour before my alarm. I lay there thinking, "Is it just my bladder waking me up? Am I still tired?" Nope. So, up I got, and on with my day. It's happened again. Days when I could sleep in had me waking up and ready to go 45 minutes before my alarm went off.

I rarely needed a nap. I think I took maybe 3 naps in almost 3 months. That's unheard of.

We went through the entire twelve day trip, and I felt fabulous. I didn't sleep in, I didn't get sick, my asthma stayed quiet. I came home thinking, "Oh, it'll hit now." I had a full schedule of rehearsals, photos to shoot, early morning classes to take my son to, and I still felt great.

My husband couldn't get over it. "That trip would have killed you before! You'd be bedridden for days!" I know! It was amazing.

I also - and this was just as amazing - fell asleep within minutes of going to bed. One of the worst parts of the constant exhaustion I'm used to is that it's perversely accompanied by insomnia. It could take 3 or 4 hours to fall asleep, despite being so tired I was nearly in tears. ("It's because you actually sleep too much," people would say. I will not describe how annoying I found that attitude.) Too often, I resorted to Tylenol PM in an effort to fall asleep. Now, I lay down and actually fell asleep! It was amazing and exciting.

Another "normal for me" problem that I've had my whole like is hypoglycemia - low blood sugar. It runs in my family. I never associated it with my thyroid, or considered it "curable."

When you're hypoglycemic, you need to eat regularly, preferably high protein meals. Skipping meals, especially breakfast, can be disastrous. I have scars on my shoulder from the time I passed out, at age 17, while cooking eggs for breakfast and fell against the burner on the way down. Pregnant with my first child at 20, I passed out at the top of a flight of stairs. I learned to make breakfast my first priority.

When you're fat, and I am, people are very skeptical when you tell them what you eat, when and why. We were friends with the manager of a local pizza place, and he noticed my food one day while we had lunch at their buffet. I had 2 slices of pizza and a salad. "Are you on a diet?" he asked. "Are you trying to be good?" No. That's how I eat. If I felt like having half a pizza, I would. I not only don't feel like it, I'm pretty sure I'd throw up if I piled my plate the way some patrons do. That messes with people's heads. They're sure I do a lot of secret eating. I don't. I don't do a lot of secret anything.

I read weight loss stories where people tell how they'd down a whole pizza and a quart of ice cream, then order Chinese takeout before they changed their ways and lost weight and I think, "Holy cow!" I don't care how big or small you are, eating like that is a terrible idea. It's also nothing that I ever did. I don't binge; I don't starve.

When you tell people that you have a medical condition that requires you to eat regularly, or to stop for a snack during the afternoon, nobody thinks anything of it if you're skinny. If you're fat, they say things about "justification" and "denial" (in private if not to your face). It's SO aggravating.

Again, I'm not imagining these issues. Again, low blood sugar runs in the family.

I know the symptoms. If I don't eat correctly (read: regularly and high protein), first I'll feel nauseated and headachy. If I don't fix it, then I start getting disoriented, shaky and weak. If, heaven forbid, I don't fix it then, my ears will start to ring and the color will drain out of everything, leaving it black and white. If I don't get some juice or something else that absorbs quickly into my system at that point, I faint. The rest of my family gets similar symptoms. My son's vision has never gone totally black and white; he gets a pulsing black ring around the edges of his vision.

After the surgery, I've had no blood sugar issues. I once had a granola bar for breakfast and ate nothing else until 2 in the afternoon, and had no problems. It wasn't even a protein bar or a nut bar, just a plain old Quaker Oat bar barely bigger than a cigar. That, again, is unheard of. I didn't even get a headache.

I went in to my surgeon for a checkup after I came home from vacation. Since my thyroid is gone, I'll be taking daily medication for the rest of my life. He started me on a very generic "adult dose," and at my last checkup told me that he'd be increasing the dosage by 25 milligrams. "You should start to feel a lot better, and have a lot more energy. You should also start to lose some weight," he said. Feel better? More energy? That was almost inconceivable; I'd surely be able to leap tall buildings in a single bound.

Soon after switching the dosage, I started to feel run down. I wondered if I was finally getting a cold. Usually, by the end of November, as it is now, I've had two or three ugly ones. I haven't had any this fall.

Nope. Soon I was exhausted, all the time, having blood sugar issues, facing insomnia ... in short, feeling like I did before the surgery.

Worse, I developed one of the symptoms that they had warned me I would develop if I left my thyroid issues untreated - irregular heartbeat. I'll be lying down, trying to sleep, and my heart will start speeding up. Then, instead of a normal "bum bum, bum bum" rhythm, my heart would go, "bum bum, bum bum, bum BAM!, bum bum, bum BAM!" It wasn't even predictable, happening, say, every fourth beat. It happened at random, first after 2 or 3 beats, then after 10 or 12.

After spending almost 2 months feeling amazing, this retreat back into pre-op body chemistry is deeply disturbing. Having heart issues is alarming, so I immediately phoned my surgeon's office and asked to go back to the old dosage. I told them exactly why.

When I say "them," I mean voicemail. I love my surgeon and cannot stand how his office operates. It is harder to get a human being on the phone than it is to win the lottery. I called twice; the pharmacy I use called twice. I finally, days later, got a message on my answering machine from the nurse: "Go get blood work done. We can't change your dose until we know what your blood work says. It will let us know if you need a change."

The worst part of this is that, if they'd actually looked at my chart, they would have seen that my blood work was "normal" BEFORE the surgery. I spent literally 20 years with doctors saying, "Your thyroid is fine. Your blood work is normal." It wasn't until a sharp eyed PA became alarmed by the growths all over my thyroid and referred me to a surgeon that someone said, "Obviously this is not normal!" My surgeon was dismissive of my pre-op blood work, pointing out the gargantuan swelling and unnatural nodules all over my thyroid as being far greater indicators of whether or not something is wrong.

And he was right.

So I phoned the nurse's voicemail back and reminded her of this. Despite assurances by her recorded voice that, "I will get back to you by the end of the day," she did not call back.

Did I mention that I'm experiencing irregular heartbeats? This is not good! I'm shaving my pills down with clippers, trying in vain to cut back my own dose.

Tomorrow, I'm phoning the surgeon's office and simply asking for an appointment to discuss "post-op discomfort or complications." I will not shut up until I get an appointment. I will speak directly to the surgeon, face to face, in an effort to go back to the medication that actually worked for me. And frankly, I will not subject my already angry veins to more blood work unless I have to.

I want the feeling of those two months back! Who knew that "normal" was supposed to feel that good?

Mom's Wedding Dresses

Most girls, I'm told, dream about their wedding day. Not about the groom - sometimes, he's just an afterthought, a place filler - but about the flowers, the shoes, the hairstyle, the decorations, and most of all, THE DRESS.

My mother didn't. She wanted to be married, and have children, but BEING married was the important thing, not the single day of GETTING married. The ceremony was just what you did so that you could be married.

Part of that was, undoubtedly, the fact that she was raised by a woman who was raised by parents who came from The Old Country; they were not very frivolous. Part was that she was born during the Great Depression, and was a teenager during the rationing of World War II. Extravagant gowns were not on anybody's agenda. Part was just her own personality.

I was filling out family history paperwork when Mom was in her 70s, and I asked her for the date of her wedding to her first husband. She gave me a date in August of 1950. "Hmm," I said, as I wrote it down. "I thought that the date on the back of the photos was in September."

"It was," she said. "That was the second wedding."

Um - what? Second wedding? Why were there two?

"We eloped. Frankie was afraid to tell his parents." He was an only child of very Catholic parents. "We had the second wedding so they'd get to see him married in a church. He didn't want to hurt their feelings."

"Are you kidding? Are you joking? Why did you never tell me this before?"

"It wasn't important."

So funny, my mom. So practical.

Look at how gorgeous she was on that second wedding day.

The man on her right is Frankie, her husband. He was handsome, charming and funny, a fire fighter. The maid of honor was named Glenna. She didn't write down the best man's name, and I never asked.

Here's another of the couple:

Such a stunning couple. They made beautiful babies, my brother Gary and my sister Lynne. Hanging in her home, Lynne has the professional portrait of Mom and Frankie cutting their wedding cake.

Frankie was an alcoholic, and the marriage didn't last.

There are no photos from her wedding to my father. There were 5 people in the room - the minister, Mom, Dad, and my aunt and uncle as witnesses. There was no reception; the four of them ate out, then Mom and Dad drove home. That was exactly the way Mom wanted it - no fuss.

When I got to be a teen, I asked Mom what happened to her wedding dress, the one she wore when she married my dad. "I gave it to you kids (me and my sister June, 3 years my elder) to play dress up in. It got ruined, and I threw it out years ago."

"What? What did you do that for?" I was outraged.

"You thought it was so pretty. And I was never going to wear it again. Someone ought to get some use out of it."

I was determined to be scandalized. What if one of us wanted to wear it ourselves? "It's highly unlikely that you ever would. It would be outdated, if it even fit."

I sputtered. She didn't understand my reaction.

"Well, what did it look like?"

She shrugged. "It was white."

"Long? Short?"

"About mid-length."

I, who tend to be too attached to my Stuff, couldn't quite believe her low key attitude.

Time passed. The lesson was absorbed years ago. Things aren't important; people are. Weddings are nice, but the marriage is the important thing.

Those are the lessons exemplified by my mother's wedding dresses.

Mom

My mother passed away 5 days ago.

It's extraordinarily painful. I knew it would be. It is impossible to measure the impact of a wonderful mother, or to quantify her loss.

She tried, for years, to get us used to the idea that she wouldn't be around forever. We knew, of course, but we didn't like it. "Grandma, you have to live to be at least 100," my kids would say. "I have to do no such thing," she would reply.

She was ready to go. As the baby in her family, she'd lost her siblings years ago. My dad's been gone for 25 years, and all of his siblings are gone, as well. Her children are all doing well, as are her grandkids. She was in generally good health, although walking was more and more painful. She lived in her own home and had no desire to ever live anywhere else. She was 83 (five years older then my dad lived to be.)

"You have to live forever," my kids would say, and she'd harumph - "Hmph!" she'd snort. She was their last remaining grandparent, so they hung on a bit tightly, and she just rolled her eyes. A very practical and unsentimental woman, my mother.

That's a compliment, by the way. I aspire, in almost every way, to be more like my mother. Sometimes when I say things like "unsentimental," people assume it's a criticism, or they translate that to mean "cold and unloving." Nothing could be further from the truth.

I feel thousands of words waiting to be written about my mother. I will need to write them in the days, weeks and years to come.

We know that death is the way of the world. None of us is getting out of here alive. We know that death is necessary and beneficial. I know, down to my toes, that Mom left this world exactly as she wished to. She had a perfectly ordinary day, then went to bed. She passed away in her sleep; had she been able to script her passing, that's what it would have looked like. I also know that she is happy, really happy, where she is. In the words of C. S. Lewis, "There are far, far better things ahead than any we leave behind." I am truly happy for my mom; I am sad for those of us temporarily separated from her. "What an adventure!" said my adored big sister, as we discussed how things are for Mom now.

It's nice now to talk to people who knew her, to have experiences like the one I had over the phone with my cousin Karen. I told her something Mom had said, and from hundreds of miles away her laugh came over the line loud and clear. "That sounds just like Aunt Bev!" she said.

Mom belonged to some people unrelated by blood as much as she belonged to me. There's no real word for the relationship, but it doesn't need defined. "Family" comes close. One woman, as much my sister as anyone my mother gave birth to, told me about a conversation she had with her own dad. Her childhood had been marked by chaos, divorce and worse. When she was an adult, he told her, "I really feel that I failed you. I always knew there was a safe haven for me, a place that would always be home, where I'd always be welcome. I didn't give you that."

"It didn't matter that he didn't give me that. I got it anyway," she said. It wasn't the house, although the house holds many memories. It was Mom.

Oh, the minefields of childhood, adolescence and adulthood that my mother guided all of us through! Some were ordinary; some would curl your hair. None of them caused her to so much as blink.

If we loved someone, they were welcomed with open arms. She chaperoned the high school drama guild on our trips to Disneyland. These weren't school sanctioned trips - we took them on our own, 15 or 20 kids and Mom. When my dad was out of town on a hunting trip, she let the drama guild camp in her acre plus back yard; she let Tony use the occasion to demonstrate his fire juggling. She let us virtually empty her rooms in order to dress our sets. She loaned us her only fur coat, because the script called for it.

We could say or do the oddest things, and know she had our backs. I was about 16 and had my best friend sleeping over when there was a knock on the door at 11 o'clock at night. To my mom, who'd grown up on a farm, that was the middle of the night. She'd been in bed since 9. Still, when I answered the door and discovered two other friends there, then crept to her room to whisper, "Tim and Joe are here. They want to know if they can have fudgecicles," the answer was, "OK." When my friend Scott wanted to spend the night sleeping in my van in our driveway, the answer was "yes."

Another best friend had a key to my car before I did. I had no license, and he did, so he used his own key to drive me places in my car.

"Can I build a Swiss Family Robinson tree house in your tree and just live in it?" one of my friends asked her once. "Sure. You just let me know when," she said. Every few years, he'd bring it up - "That tree still there?" and she'd say, "Still waiting for you." "Maybe I'll bring my son over, and we'll build that treehouse," he'd say. "I'll be here," she'd tell him. We've called it Tony's Tree for years. It will always be Tony's Tree.

This does not mean that she had no boundaries; the boundaries were carved in stone. It meant that she knew the difference between the big stuff and the small stuff, and she truly did not sweat the small stuff.

My oldest sister is 57, and, with Mom's passing she said, "Now I'll have to be a grownup." She's a remarkable woman, brilliant, with a great life, great kids, and adorable grandkids, but she still counted on her mom. I feel the same way. The last time I saw my mom, the day before she died, she was bailing me out of another jam. I'd locked myself out of my house, in my pajamas, so I went to borrow her keys. She laughed at me - as well she should - and loaned me the keys. Without my safety net, without my mommy to rescue me, I'll have to step up my game. The world looks different now.

But, I swear, I can practically hear her. I will do or say something, and know what Mom would say if she were here. She may have moved on, but she hasn't really left us.

Still, I will miss her until we are together again.

"I'll miss you when you're gone, Grandma," my kids would tell her, and she'd say, "Why? I've lived a good life."

Indeed she did.

Illness Part 3: The Scar

It's a good thing I'm not terribly sensitive about my appearance.

I knew that surgery to my throat would mean a visible scar. I was a tiny bit worried about it, but not too much. I have all kinds of scars, surgical and otherwise, and they don't bother me. I knew from a previous surgery that this particular surgeon left small scars that faded easily, so that was a comfort, as well.

A week or so after I left the hospital, I ran into a friend while out shopping. She asked how I was doing, and noticed a healing wound. "Did they do it laparascopically?" she asked, noticing that the wound seemed small.

"No. That's the surgical drain," I said. Tilting my head back, I said, "This is the scar." She gasped and visibly recoiled. "OH MY GOSH," she said.

I've gotten that reaction more than once. My oldest daughter squirmed, shook her hands and said, "EW EW EW!" the first time she saw it. My husband opined that I look as if "you've had surgery by Sweeney Todd." (A few years ago, only theater geeks would have understood the reference, but now all Johnny Depp fans get it as well.)

My family noticed, as did I, that the other patients on my floor who'd had similar surgeries had simple bandages across their throats, right in the hollow. Sometimes they had a single cotton ball with a strip of tape. I had square of gauze about six inches square across my neck, with bloody rubber tubing snaking out from underneath.

Before I had my grossly enlarged, nodule ridden thyroid removed, the surgeon came into my hospital room and marked my neck right along the natural crease, so he'd know where to cut. The actual cut, about four inches long, is therefore pretty hard to see.

The opening for the drain actually annoys me more. The tubing was held in place by a stitch on either side. When the nurse removed it, she warned me, repeatedly over a few hours, that it would "really hurt." "This has a really wide mouth that flares out under the skin," she said. She had me take deep breaths and brace myself; I was anticipating some real pain. I hardly felt anything.

The cut itself was almost an inch long. The nurse put a SteriStrip over it to hold it closed. She also clipped the stitches across my throat and SteriStripped it before I went home.

("Are you going to wear a scarf or something over that when you go out in public?" my mother wanted to know. "Nope," I said. For one thing, it was August. For another, I think that the general public can handle evidence of surgery. If they can't, oh, well.)

The surgery site appeared to heal well. The drain, however, did not. Ten days after the surgery, I sent this note to two best friends:

Reason 378 Why The Office Staff at My Surgeon's Office Drives Me Crazy

So. My incision is healing nicely, with what looks to be a thin scar, tucked into the fold of my neck. This is what I expected, based on the last time he operated on me and pre op conversations.

The drain opening (I have a drain in my neck!) is another story. When the nurse took out the tubing, she just made one of the SteriStrips for my neck incision a bit longer than the others so it would cover the hole and, in theory, seal it.

It's almost an inch long, and it's not sealing up. TMI alert! Graphic bodily info coming! They told me that if it became obviously infected - smelled bad, had pus, was inflamed and/or draining - I should call them. It hasn't done any of those things, but the SteriStrip was still across it the 2nd day out of the hospital when I noticed that the gap was widening. In the gap (warning! warning!) it looked yellow and shiny. The yellow shininess didn't rub off when I cleaned with gauze, so it's a solid. It's also not a scab. I have come to the conclusion that I'm looking at the subcutaneous fat. The gap is getting wider and wider; it's now about an 1/8 to 1/4 of an inch wide.

I change the bandage twice a day, because it looks too gross to just leave open. I finally decide to call the surgeon's office - always a treat involving phone tag - to see if I can come in and maybe get a stitch or two put in.

Nurse: It'll close on its own.

Me: It's not closing. That's the problem.

Nurse: But it will close. It won't stay open forever.

Me: It's been 10 days. It's getting wider and wider. Do you think that after 10 days those two pieces of skin will reach out and grab onto each other somehow?

Nurse: It heals from the inside out. It'll start healing on the inside. You can put a bandage on it if you want.

Me: It's never been WITHOUT a bandage. They SteriStripped it in the hospital, and I've had a bandage on it ever since that came off.

Nurse: He generally doesn't put stitches in those.

Me: Generally, they heal. This one isn't closing. Do you think perhaps I could have the doctor look at it to see if he needs to treat it?

Nurse: He'll look at it at your follow up appointment.

I finally browbeat her into giving me an appointment tomorrow. I also asked for the results of the biopsy, and pointed out that I'd called on Monday to ask for those results, and hadn't gotten a call back.

Nurse: What labs? I don't see that we have any labs here.

Me: THE BIOPSY. Of the thyroid that was REMOVED last week.

(I mean, I'm just waiting here to find out if I have cancer. No big deal. Don't trouble yourself.)

Nurse: Oh! Well, I'll leave a note for the doctor to call you.

Never mind. I'll see him tomorrow.

                I like my surgeon, but his office staff makes me almost want to resort to violence.

               

                The next day, the surgeon was at least clear and brief. "If I put stitches in that, it'll seal in the infection and it'll get worse." He recommended slathering it in antibiotic cream twice a day, which I was already.

                It eventually did heal, but it's very noticeable. It's lumpy, and much wider than the actual surgery site. Maybe I should be glad that people notice it and not the big one.

                The biopsy was negative, by the way. No cancer. The chance was small, but it was there. It was good news.

                One of my friends is a medical professional, and every time he sees me he handles my throat. "Look at that! It looks great! The swelling is going down!" he says. That makes me happy, too.