Breakfast today …

… was a bowlful – about a cup – of pre-cooked quinoa, bulgur wheat and steel-cut Irish oatmeal, nuked until steamy. Mr Wren, the dear, likes to mix things up. He also has no sense of proportion, so we have a huge container full of cooked grain cereal in the fridge that needs to be eaten soon. I whittled about an eighth off the top this morning.

Normally, I eat just Irish oatmeal with a teaspoon of brown sugar/Splenda blend, a generous shake or three of Saigon cinnamon and a scant splash of evaporated milk. This, I’ve learned over the last year, is a delicious, filling, low fat, slow-carb breakfast. It’s wonderful on cold mornings. It sticks to the ribs and provides a nice, slow-burn energy boost. I usually make about four cups at a time and refrigerate the leftover cereal, which microwaves well. Since I don’t like it every single morning – I eat an egg with whole grain toast or toast with a slice of Tillamook sharp cheddar on the non-oatmeal days to avoid breakfast boredom burnout – four cups of oatmeal lasts me about a week.

But yesterday Mr Wren got up wanting hot cereal and, being himself, wasn’t satisfied with just oatmeal. So he got out the Dutch oven, pulled a bunch of different grains, and made himself some. Lots of it. Now I’m helping him eat it before it goes bad. Cary and Matt don’t eat hot cereal at all. They’re both grown-ups, but they prefer Lucky Charms and Cap’n Crunch.

I despair.

I’m writing about this because, like a lot of people who’ve worked 9-5 most of their adult lives, I’m terrible about eating breakfast in the morning, regardless of whether it’s a nutritious one or one that just puts me into sugar overload. When I was working every day, I simply couldn’t make time for brekky before I started my 50-minute commute down the mountain at dawn. And, I was never hungry at that time of morning. I’m one of those people whose metabolism doesn’t really wake up until about three hours after the alarm goes off. That meant that at 8:30 or 9 a.m., I was suddenly, stomach-growlingly ravenous, but way too busy to stop and eat a nutritious, time-consuming breakfast.

So instead, I ate the cookies or donuts, sometimes both, that my colleagues and I frequently brought to the office as a form of tasty sustenance and bribery.

Eighty pounds later …

Back in my slender Germany days, we’d do things a bit differently. I mostly didn’t eat breakfast back then, either, which meant a long stretch of empty-stomachness until 11, when I’d take off like a flash for a slice of pizza and a Diet Coke in the Burger Barn. There weren’t any grocery stores or donut shops handy along the route to work in the morning, and the commissary didn’t open until 10 a.m. But about once every two weeks, my colleagues and I would pick a day and we’d all, German and Americans alike, bring Frühstück foods to the office on a day when we knew the boss would be out. Sneaky, weren’t we?

Everyone brought something – crusty, chewy, sliced bread, Brötchen ( plain German bread rolls, deliciously crispy and golden on the outside; soft, white and fluffy on the inside), several different types of cold cuts, cheeses of all varieties, some sliced, some spreadable. Jam. Pastries. Fresh fruit. Soft dairy butter. Orange juice.

And then we’d crank the poor old office coffeepot into overdrive.

Naturally, people from other offices on the U.S. Army post would stop by our office for this or that – we were Army  Public Affairs, after all. No problem – or kein Problem, as my Germany colleagues said – we invited them all to join us. It was always quite a jocular little breakfast party. If Fred (the fortuitously absent boss) knew we were using the big conference table in his office as a breakfast spread in his absence, he never said a word. But we never even considered asking him to join us, as he’d have nixed the whole thing.

You see, Fred always ate his breakfast before he came to work. It was always a big, hot breakfast, one of his “things.” His wife made it for him, and he ate it while he read the day’s Stars & Stripes. I kid you not – he made sure we knew about it. Fred was a nice but rather humorless man. He didn’t have a lot of imagination and was obviously bored to tears. I figured he was just serving out his time as a high-ranking civilian, waiting for the dayl he could retire on his comfortable government pension .

Oh, boy. There I went, off on a tangent.

OK. Back to it: my point was that while I’ve always been bad about making a healthy breakfast part of my day, I do it now. I think my health has improved because of it. Part of the reason I’ve been able to change my habit is that I’m not working outside my home these days, so I don’t have a long, crack-o-dawn commute to face. And while I’m looking for full time employment again, that’s one thing about it I don’t look forward to. I’d grown to hate that long drive at the beginning and end of each workday. I hope I can find work a lot closer to home this time.

But even so, nuking pre-cooked cereal is something I can do. It’s quick. Eating it doesn’t take long. I can even bring it to work with me and nuke it there, if there’s a microwave handy. I don’t mind eating at my desk – but these days, I want to make sure what I’m eating is good for me and isn’t going to add to my middle-aged spread.

There. I did it! I wrote a post mostly about nothing, just for the fun of writing, and got to take a nice little trip back down memory lane in the process. The only trouble is that now, I’m craving Brötchen. Guess I’ll have to google up a recipe …

 Have a great day, everyone!

Buckle Me Up: No more invisible RA

I wish there were  real, flesh-and-blood human beings who also have rheuma in my community. Because I’d like to get to know those people. I’d like to talk to them, compare notes. Find out how they cope with the day-to-day “aches and pains” of the disease. I’d like to commiserate with them and exchange ideas on ways to deal with the “aches and pains” (read agony) of rheumatoid arthritis.

But it appears they don’t really exist. As I go about my days I don’t see other people limping along on painful feet. I don’t see people fumbling their wallets at the cash register in the grocery store, trying to slip the debit card out of it’s too-tight slot with hands and fingers stiffened and rendered breathtakingly painful by rheumatoid arthritis. I certainly never see anyone else struggle to put a jacket on because of an RA-impaired shoulder joint, or try to put food in a mouth that will open only an inch or two because the joint that hinges their lower jaw to their skull is inflamed and exquisitely painful upon movement.

No. I don’t see any of these people or any of these conditions. I only experience them myself.

But I read that there are about 2 million people in the U.S. who suffer with RA just like I do. I’m No. 1,457,932 in that exclusive group, I guess. I don’t have a card, so I can’t be a card-carrying member of the Hey-I-Have-RA Club, but according to the Wise Statistic Keepers, I belong to the club anyway.

Two million American men, women and children share this rotten disease with me. Yet I’ve only met one of them personally. That was 20 years ago in Bremerhaven, Germany, when I lived there. That man had it mainly in his spine. I was married and he was always trying to hit on me, so it was uncomfortable talking with him, but he absolutely recognized – and empathized with – my pain. He suggested alternating hot and cold packs on sore joints as a possible method for relieving my pain. It sometimes worked for him, he said.  I’ve tried to follow his compassionate advice (when I can bear the cold-pack part) ever since.

He and his wife were transferred to Italy not long after I met him. At the time, I was relieved, but I’ve often thought of him since then. I’ve wondered how he got along, whether the warmer, drier climate in Italy relieved any of his pain. I hope it did.

When I’ve admitted to others that I have rheumatoid arthritis (perhaps they asked, solicitously, why I was limping so heavily) a frequent response is “Oh! I know what you mean! I have arthritis in my knee! Isn’t it a bitch getting old?” And then they launch into their experience with their painful, creaky knee. I listen respectfully. I know osteoarthritis hurts, too. A lot.

But really, they don’t have a clue.

I wasn’t “old” when I was diagnosed with RA. I was just 31. I was a young mother whose career was just starting to take off. I’m “old” now (whatever that means), but I sure wasn’t back then. Rheumatoid arthritis isn’t a “wear and tear” disease, a natural (if annoying) part of growing older. RA is an autoimmune disease. That means the body, which is profoundly confused, attacks its own joints as if they’re foreign invaders. The body is out to destroy itself in order to save itself. Go figure.

Rheuma attacks randomly, carrying out clever ambushes so diabolical and unexpected that the Special Forces could learn stealth tactics from it. The inflammation and pain it causes can range from mild to horrific. It can cover that range during the same day, or perhaps over several days. Or a week. Or longer. The pain can hit more than one joint at a time. It can move around. Today my left knee hurts. Tonight, it might be my right shoulder, or my right ankle. Maybe both. Maybe neither. I never really know what to expect.

Try explaining that to skeptical family members and co-workers.

Sometimes RA only slows me down a little. Other times it literally disables me, giving me an unwanted glimpse into my own future. Gee, thanks, I think. I really wanted that image of myself gliding down the mall on a chunky little motorized scooter, my fat, flabby, polyester-clad arse spilling off both sides of the saddle. Yeah. Thanks so much.

Such images give me real motivation, however, to move my body as much as I can. I don’t want a future of RA-imposed weakness and obesity, a life where my only real pleasure is eating. The very idea appalls me. So in spite of the pain – or perhaps, because of it – I do what I can to prevent that particular image of the future from coming true. I mind my calories, eat healthy foods and exercise for flexibility and to maintain my independent mobility.

Yet it’s possible that RA will disable me anyway. I’d prefer not to think too hard about that.

Even though these fears and experiences, this daily pain and stiffness, these frequent schizoid sneak attacks my body wages on itself are shared by 1,999,999 other Americans and many more millions of people all over the world, I deal with my day-to-day, intimate and personal case of RA utterly alone.

How can that be? Why aren’t there local support groups for people with rheumatoid arthritis? How come there are no special exercise classes, or classes on how to cope better with the disease available? Why aren’t they part of every town’s park and recreation program, available for free or for minimal cost? Why, in the last century and during the first decade of the new millennium, hasn’t medical science found cure for this disease? Why don’t people know what it is and what it’s not? Why is it so hard for me to find others who also suffer with RA?

I don’t have answers to those questions. But I’m working on starting up those classes I just mentioned. I’m going to do it myself. I’m at a point in my life where I won’t mind getting up in front of a group, talking about and demonstrating ways to cope with RA. I want to do this. I want to help others who are struggling with this disease find some comfort and camaraderie. I want them to have hope.

The flesh-and-blood people who have RA in my community are invisible, just like me. But if I have anything to do with it, we won’t be for much longer.

~*~*~*~*~*~

 

Did I mention hope? Well, here’s some: A new advocacy and charitable nonprofit organization that will work for people with autoimmune arthrits is forming right now. Read on:

What if autoimmune arthritis conditions were universally understood? What if you never again had to hear, “you’re too young to have that!” or “why don’t you take some aspirin to make the pain go away?” or “but you don’t look sick!”

 Wouldn’t it be nice if people understood that “I’m too tired to go” meant you were experiencing obnoxious, debilitating fatigue that is not necessarily remedied from rest or a good night’s sleep? What if there were in-depth, age-appropriate exercise programs available where you live that catered to different levels of disability and fitness preferences?  How much better could your health be if there were partnerships with retailers who would offer discounts on healthy foods or fitness facilities that would minimize monthly payments for autoimmune arthritis patients?  What if there was a global database of sufferers, family members and caregivers who had the ability to form friendships in order to deal with the daily struggles of disability?

Hopefully beginning in 2010 these wishes will start to become a reality.

The “Buckle Me Up!” International Autoimmune Arthritis Movement (IAAM) is an up-and-coming, worldwide nonprofit which will focus exclusively on helping the autoimmune arthritis sufferer*.  The mission: Eliminating autoimmune arthritis, and diminishing the disability associated with it, by raising global awareness and improving the quality of life for those who have it through education, partnerships and support.  The IAAM is a nonprofit formed by autoimmune arthritis sufferers, run by autoimmune arthritis sufferers and, therefore, will continue to address the problems faced by autoimmune arthritis sufferers.

The IAAM is not in competition with any existing charity.  In fact, part of the mission is to partner with existing organizations to assist with autoimmune arthritis awareness efforts.  Recently the IAAM joined forces with the Arthritis Foundation and are working on partnering with other arthritis-based charities both nationally and internationally. 

Founder Tiffany Westrich is personally working with the Arthritis Foundation’s “Let’s Talk RA” program to restructure the 2010 strategic planning, in which IAAM will maintain an intricate role.

In addition to partnerships, a primary focus of the movement is to make a lot of noise, verbally and visually, by re-branding the misconceptions of the term “arthritis.”  Examples include the published web-commercial series, “A Day with RA”, showing the realities of living with an autoimmune arthritis disease; developing the first official autoimmune arthritis charity bracelets; and being featured on MyRACentral.com and WebMDtv’s “RA in the News” (Summer 2009).  

The IAAM hope to continue this level of exposure in all autoimmune arthritis arenas, including creating web-series awareness commercials for each autoimmune arthritis condition.

If all the autoimmune arthritis sufferers around the world come together, we can make this a reality.  But first, we must raise money to finance the legal fees and start up costs to become an official nonprofit.

Today, many autoimmune arthritis blogs (just like RheumaBlog, which you’re reading now)  are joining forces to reach out to our community of sufferers for help. The IAAM is asking for $1 donations to assist with nonprofit start-up costs.  Every dollar earned will bring all of us who cope with autoimmune arthritis one step closer to being understood.

 To view a complete list of start-up costs and to send your $1 donation, please visit www.BuckleMeUpMovement.com/donate.

Note: This piece has been cross-posted in my other blog, RheumaBlog.

Happy New Year, 2010

May this new year bring you abundant joy, laughter and health. May peace fill your heart and love your soul.

-Wren

A special gift

I’m one of those maddening people who, when you ask them what they want for Christmas/birthday/Mother’s Day say, “Oh, I don’t know. I don’t really need anything …”

And I’m (like all those other maddening people) perfectly sincere. I really don’t need anything. There are things I want, but that’s different. Frivolous. I don’t like asking for things that I want but don’t need. And I’m especially careful about asking for expensive gifts.

There was a time, not so long ago, when I never even had to think about that last – there wasn’t enough money in our bank account at any given moment to even consider a gift that cost over $25. But today, even with the poor economy, I have to be mindful because my sweet Mr Wren generally isn’t. He doesn’t buy a lot of things, but when he does, he tends to go overboard.

When he asked me what I wanted for Christmas a few weeks ago, I gave him the stock answer. He rolled his eyes – just like I do when people give me that response. Come on, I always think, help me out here! They don’t. And I didn’t help Mr Wren, either.

Fast forward to Christmas morning. Here we all sit in the living room, each one of us with a small pile of gifts. We start opening them. I get a beautiful, sparkly bracelet from Cary and Matt, and a comfy warm-up suit in royal blue (my favorite color) from my mother.

I pick up the wrapped gift from Mr Wren. It’s smallish. Solid. I shake it. Nothing moves. He sits there next to me, grinning. “Open it,” he urges. Matt and Cary stop opening their presents to watch. They’re grinning too.

What in the world? I think, and I tear off the ribbons and paper. And … OMG. It’s a Kindle.

I have always, since I was very small, loved to read. And I love books. I love the heft, the feel, even the smell of books. I love thinking about the process – of the author hunched over a desk, writing, lost in her imagination; of the publisher reading the manuscript and deciding the story is worth publishing; of the editor and author working together to clean and hone and polish the words so that the reader forgets she’s even reading; of the graphic designer choosing the font and style and perfecting the appearance of the book; of the typesetting, the huge presses, the book-grade paper, the ink; of the end-papers and the binding. As a reader, opening a new book is the first step of an adventure to me. If it’s a good one, I can fall right into the page and disappear.

There really is little in this world that I love more than reading a good book.

But rheumatoid arthritis has taken much of that pleasure away from me these last two years. I can no longer comfortably read a book for very long. My hands throb and ache. It’s an effort of will to grasp it, even if it’s not very heavy. My fingers are fumbly, making it difficult to turn the pages. As a result, I do most of my reading on the computer these days. But it’s not books I’m reading – instead I read blogs, news sites and other sites that catch my interest. They’re good, but none of them are stories. None are fictional, springing fresh from a writer’s imagination. Being unable to experience that particular form of creativity has saddened me, but I’ve accepted it.

I’ve found that I can listen to audio books if I’m driving, but in just about any other situation I can’t keep my mind on the reader and the story. I’m too distractible. I get antsy. I’m constantly losing my concentration and having to back up and listen all over again. This destroys the continuity of the story and annoys me – mostly at myself.

About six months ago I read a blogger’s post about the Kindle. He was considering getting one, but was holding off because like me, he loves books. He loves the physicality of books. And yet, he wrote that he could see the draw of an electronic reading device. No need to buy and find space for more bookshelves. Digital books were less expensive than the ones made of paper and ink. He wouldn’t have to lug a 450-page tome around anymore. There were upsides to getting an e-reader even though he found it disturbing to let go of traditional ink, paper and fabric books.

I found myself agreeing with the entire post, but for me, getting an e-reader wasn’t even something to consider. They were far, far too expensive, for one thing. Amazingly, prohibitively expensive. And because I love my books, I really couldn’t imagine trying to read them on an electronic screen, minus the solid weight of the book in my hands, even as sore as they were. I blogged about it myself.

I told Mr Wren about it, mentioned my frustration with how rheuma made holding a traditional book too painful for me, but how I also found both the techie coldness and the high cost of an e-reader sort of off-putting. He listened. Nodded.

And he remembered.

So I am now the surprised owner of an Amazon Kindle e-reader. And you know what? Forget all that techie coldness stuff. I absolutely love this thing. I feel like I’m living in Star Trek time. The Kindle is so light – it weighs only 10.2 ounces — that it’s mostly painless for me to hold onto. I can (and have) increased the size of the font to accommodate my dimming, middle-aged vision and find pressing the flat buttons on the side of the device to turn pages forward or back an almost automatic response to reaching the end of a page. And to my delight, not only are e-books much less expensive than their paper-and-ink counterparts, there are hundreds and hundreds of them that are free. Anna Karenina, anyone? Pride and Prejudice? The Invisible Man?

I am so happy with this gift – and Mr Wren’s sweet thoughtfulness – my eyes tear up every time I think of it. He spent wayyyy too much on this gift, but I’ve already forgiven him. He made this Christmas a particularly special, very merry one for me. Mr Wren gave me back my books.

Merry Christmas!

Wishing you a joyous and cozy holiday

filled with love and laughter.

-Wren

Thoughts of the meandering type

I’m up early-early after sleeping not-so-well. I took Tylenol PM last night, as I have the last three, but this time it didn’t work even a little. So I saw each hour on the clock, waking in annoyance from image-and-thought-crowded dozes to wide-blinking-awakeness as I flexed my throbbing, gravel-filled digits and wished for hands less demanding of my complete attention.

The single, bed-time Elavil tablet my rheumatologist prescribed – which I looked so forward to as a solution to the two a.m. ceiling stare – worked only half-heartedly and erratically to help me sleep. But it worked enthusiastically to increase my appetite. This is aggravating. I don’t need help with my appetite; in fact, I’ve only just this year gotten the beast under control after a lifetime of bad eating habits. To suddenly crave buttery Ritz crackers, salty-crunchy tortilla chips and sweet slice after slice of Thanksgiving spice cake with fresh whipped cream – and to mindlessly indulge the craving – is to look away as Doom creeps in the back door, quiet, breathing the rancid-sweet breath of the ketosis-plagued diabetic.

Bleh. I’ve shoved the evil Elavil to the back of my pill cabinet (yes, I have one, to my chagrin) and put ranks of vitamin and supplement bottles in front of it. I’d rather lose sleep than regain those hard-lost pounds. Besides, I gave all my fat clothes to the local hospice thrift store. My wardrobe consists now only of lesser sizes. I like them.

 ******

 Yesterday Mr Wren and I took a ride down the mountain to Home Depot. The reason? To buy door levers. Our house is currently equipped with nice, small, round, ubiquitous doorknobs. I’ve never given them much thought. But with my hands in a seemingly endless flare, it hurts like a _________ (fill in the appropriate curse) every time I open a door. My right hand protests loudly at grasping the knob and then shrieks when I twist. The result is me standing in front of the still-closed door, clutching my angry hand to my chest as I turn the air around me blue. And sometimes, the door does not open.

This is not good.

When I told Mr Wren that I wanted to change all the doorknobs in the house to levers (and this after 12 years during which the knobs did the job just dandy), he didn’t even blink. Off we went.

After perusing the door-paraphernalia aisle and exclaiming in dismay over the stunning prices, we bought five “brushed antique” door levers. Two with deadbolts for the front and back entry doors, and three with thumb locks for the bedrooms and bathroom. That leaves one bedroom and one bathroom still to change out, but as I don’t use either of them very often, they can wait for their levers. If I need to get into one or the other, I’ll either grit my teeth or holler politely for assistance.

The hard part will be the actual removal of the old knobs and installation of the new levers. Mr Wren will do his best to procrastinate this unpleasant task until Hell freezes over, but I can’t wait that long. I’m going to give it a try myself today. And if I can’t do it, then perhaps Matt will come to my rescue. One way or another, I’m going to be able to open doors with my elbows if I need to before the day is out.

 ******

 It took its sweet time arriving, but early winter (such as it is) has tentatively arrived here in the California mountains. The daytime temps are just reaching the mid-50s; nights are down into the mid-30s. I realize that for most people, these temperatures are downright balmy for this time of year, so I have no right to complain. And I’m not. I like the cool weather. In fact, I live through the warm springs and sizzling summers dreaming of the chill breezes of late fall and the hard frosts of winter. Over the next three months or so we’ll have some snow – more than a little, if we’re lucky – and plenty of rain, also if we’re lucky. I know this sounds perverse to those of you who dread the cold and damp of winter because of rheuma or simply out of preference. But along with the fact that California’s well into its Third Official Year of drought conditions (more like five years, if you ask me), I just prefer bundling up to stay warm to stripping down to stay cool. I like wearing sweaters and thick socks. I adore hot soup – the aroma as it cooks and the flavor when I eat it. I love working and playing outside in the cold so I can go inside and warm my hands and backside at the living room wood stove. I love the way snow transforms the world and the sound rain makes when it spats against windows and drums on the roof.

Yeah, I’m cracked. So what’s new?

Why I love Autumn

This photo was taken from my kitchen window at 4:10 p.m. It’s been a chilly, breezy, rainy Sunday.

This one was taken about five minutes later.

What more can I say?

Kid won’t mind? Taze her.

A police officer in Little Rock, Arkansas “tazed” a little girl, with her mother’s approval, because the child refused to take a shower.

Officer Dustin Bradshaw’s report states that the girl was “violently kicking and verbally combative,” so he darted her with his Tazer, giving her a “very brief stun to her back.”

Is it just me, or does this seem a trifle … overboard?

I mean, this was a 10-year-old, not a 180-pound man hopped up on angel dust and waving a tire-iron. A 10-year-old girl. Unarmed. Kicking and screaming and obviously out of control, but this is not necessarily abnormal behavior for a child. Annoying, aggravating, even infuriating behavior, certainly, but who in hell would shoot a 10-year-old with a Tazer gun?

Apparently, an American policeman.

Officer Bradshaw has been suspended from duty for a week, with pay. I know the suspension will go on his records, and that’s not so good for him, promotion-wise, but otherwise, it’s like he’s getting a free week of vacation for electrocuting a child in order to stun her into submission. And you know what? He wasn’t suspended for shooting the child, but because he forgot to attach a video camera to the gun before he fired. Seems he broke department rules when he did that.

The little girl was physically unharmed, according to the story by the Associated Press, though one does wonder what her mental state must be, given that her mother called the police on her for not taking a shower when she was told – and then gave the officer permission to shoot her with a Tazer because she was throwing a tantrum.

This is incredible. No – it’s monstrous.

The child is now staying at a youth shelter. Ozark Mayor Vernon McDaniel wants the Arkansas State Police or the FBI to investigate whether the use of the Tazer on the child was proper.

Holygods. This is a question?

What’s next? “9-1-1? Hurry! My 14-year-old son won’t clean his room! Have the police come and taze him! That’ll teach him to do what I tell him to do…”

Sometimes I wonder what we’ve turned into. Where are the brakes? We accepted that our government was torturing people – most of them innocent people. It was, I guess, a kind of revenge for the Sept. 11 terror attacks, along with two wars. Now we stun children into submission with high-voltage darts for not minding their mothers.

America seriously needs a time out.

Correction: Frequent commenter Der Schildtraeger points out that I misspelled Taser. It’s an “s”, not a “z”. He’s right. Oops. He also has the mistaken impression that I dislike policemen. Au contraire. I like policemen, generally. But I dislike policemen tasing 10-year-olds, for whatever reason. Thanks for the comment, DS.

Your Word is “Fearless”

You see life as your one chance to experience everything, and you just go for it! You believe the biggest risk is being afraid and missing out on something amazing.Sometimes your fearlessness means you’re daring. You enjoy risky activities. And sometimes your fearlessness means you’re courageous. You’re brave enough to do the right thing, even when it’s scary.

What’s Your Word?

Blogthings: Free Quizzes for Everyone

Isn’t that funny? And here I thought my “word” would probably be “cautious.” If I think about it, though, I have always liked to do unusual things. Like join the Air Force. Like fly a plane even though I’m afraid of heights. Like shoot a gun (not at anyone!). Like go off and live in another country for six years. Maybe “fearless” is the better word for me. Hmmm … What will I do next?

Tip o’the hat to Blue Girl… 

A preemie’s story

I was born on October 25, 1956. My timing was a bit off; I wasn’t expected until the second week in December, a sort of early Christmas present from the stork. Instead, I was an early birthday present for my mother, who was born in mid-November.

I jumped the delivery gun by seven weeks.

I didn’t actually plan this. If I had, I’m sure I’d have been in the proper position for launch. As it was, the first part of me the startled doctor saw was my tiny, skinny, wrinkled butt (a physical state I’ve never been able to duplicate, though at this particular age, I’m working on the wrinkled part and feel sure I’ll achieve it before long).

It was a real big pain for my mom, my premature birth. Dad was caught off guard but he took it all in stride. All he had to do was pace the waiting room, smoking, wondering which flavor he’d gotten and hoping he’d know soon so he could go buy cigars to hand out. Mom was the frightened, brave girl-woman with her feet up in the cold steel stirrups, though, unprepared for any of it, no anesthesia, no Lamaze training – hell, no cigarettes. They had a hard time getting me out – I guess maybe I realized my mistake and changed my mind. Anyway, my birth took a long time. Mom endured it, terrified as she was.

I’m flip about this now, 53 years later. But the fact is, Dad was terrified for my mom and for me, because being born prematurely in the middle of the 20^th Century was pretty dangerous situation. It still is, but today medicine can save the lives of premature babies who would surely have died back when I was born. I was terribly early and breech to boot. I’m lucky to be here at all.

They kept me at the hospital, in an incubator, for seven weeks. During that time my parents visited me every day, but they weren’t allowed to hold me. A nurse would get me out of the incubator for a minute or two and bring me to the window so Mom and Dad could look at me. At least once she held me up, cradled in and balanced in one hand, so my Dad could take a photo.

I gaze at that old, faded and yellowing black-and-white print in something like awe. My head wasn’t even as wide as her palm. My bare feet – each with the correct number of toes – couldn’t have been more than an inch long. And my toes: think baby corn kernels.

“You were like a baby doll,” Dad used to tell me, wonder in his voice, “but you were alive.” I had yellow jaundice because my premature liver wasn’t ready to work on baby formula yet. I had yellow fuzz on my head. Today my left ear lacks the curl-over along the top, making it sort of pointed, like an elf’s ear, because I wasn’t quite finished when I came off the assembly line.

I like to think that perhaps there’s an elf in my ancestry.

I’ve never met another preemie, but I know of one other, a man who’s a year older than I, and who, in a quirk of coincidence, is also of Finnish ancestry. Stephen Kuusisto is a poet, an author, and a professor of writing and disability studies at Iowa State University. He’s a speaker, a blogger, an advocate for people with disabilities and a Fullbright Scholar.

Kuusisto is also blind, a victim of the pure oxygen that was pumped into his incubator to help keep him alive. The trouble was the oxygen sometimes damaged the delicate eyes of premature babies.

The medical world realized this mistake the same year Kuusisto was born, 1955. Unfortunately, the practice wasn’t stopped in time to save his vision. By the time  I was born, they no longer used pure oxygen in the incubator. My peepers were just fine, though I wear glasses and have for the last ten years or so. My eyes are getting old right along with me. Once again, I was very lucky.

I was a preemie, but I grew up to become an average-sized woman. I was on the slow end of the pediatric growth charts for the first seven years of my life, though, prompting my doctor to worry, privately, that I might be a midget.(He only told my mother years later.) Then I had my tonsils out and started growing like a weed.

Sevens have always been important in my life.

According to the March of Dimes, there are 31 percent more babies being born prematurely since 1981, the year my own daughter was born (right on time). Prematurity is the number one killer of newborns and can lead to lifelong disabilities. These babies aren’t only diminutive. They’re unable to suck, and often unable to breathe on their own. Their tiny bodies – their organs, brains, circulatory systems, renal systems and lungs aren’t ready for life outside the womb yet. That’s just not good. In fact, it’s tragic.

The March of Dimes – and millions of moms and dads and prospective moms and dads all over the world – would like to know why so many children are born before they’re “done.” Because right now, there’s no good, solid answer. Premature births happen without warning and often, without discernable reasons.

Many people are donating funds toward finding the answer, and a solution, for premature birth. You can be one of them, as I am. Visit http://marchofdimes.com/prematurity/index.asp for more information about how to do that, and how to raise awareness of this serious issue during November, Premature Awareness Month. Join us in the March of Dimes’ Fight for Preemies.

Thank you for your interest and for reading this post.