One of the first books my son and I read this year was Who Was Mister Rogers? We read it over the course of several nights at bedtime. Ryan didn’t know much about Mister Rogers. And, I think Mister Rogers only made his way onto Ryan’s radar because of the recent Tom Hanks movie. (We haven’t seen the movie, just the posters and billboards advertising it.)
Because Ryan is a big Tom Hanks fan, due to movies like Toy Story 1-4, Apollo 13, and the documentary film Magnificent Desolation, Ryan became curious to learn more about Mister Rogers.
I grew up watching Mister Rogers. But I didn’t realize what an impact Mister Rogers had on me until Ryan and I read this introductory biography.
Now, I can acknowledge just how much of my teaching style was influenced by Mister Rogers.
I always told my kids I loved them. (I referred to my students as “my kids”.)
I told my kids they were special.
And each year, I acknowledged every student in my class with a customized achievement certificate. Because let’s be honest, not all kids are going to be strong mathematicians or excellent spellers. But every child has a special skill, quality, talent that deserves to be recognized.
I recognized my kids for their neat penmanship, for reading aloud in a clear voice, for being a responsible line leader.
As Ryan and I read, “Mister Rogers taught kids an important lesson, that everyone is special in their own way.”
The physical therapist was talking about my left calf. My calf is, was, the primary source of pain related to my autoimmune disease. For the last few months, the pain has traveled and now extends up into my thigh.
But apparently, what I refer to as a hard knot, or tightness, in my leg, my physical therapist calls “chronic congestion.”
She held my leg up, my foot pointing toward the ceiling as she rubbed and massaged and gave a basic summary of my case to another physical therapist. “She’s got chronic congestion all in here.”
It is chronic. I’ll give her that. My condition began in 2010 when I woke up with a swollen left calf, unable to stand or bear weight or walk for days. I was hospitalized and treated for cellulitis, a bacterial infection doctors believed was the cause of my swollen, red calf.
But even after my calf regained its normal appearance, even after I could walk and drive and climb stairs, my legs were never the same.
About a year and a half after my hospitalization, I was diagnosed with a rare autoimmune disease called Undifferentiated Connective Tissue Disease (UCTD). It has overlapping symptoms of lupus, rheumatoid arthritis, and myositis without it being any of those diseases. It’s a medical hodgepodge in a sense, and a whole lot fancier way for doctors to say they don’t really know what’s wrong with my legs or what is causing it.
Whatever you call it, it means each day I experience varying levels of pain, fatigue, weakness in my legs with my left leg always worse.
So I completely agree with the chronic part of her statement.
I hear congestion, and I think of a stuffy nose.
Or I think L.A. traffic and planning a visit to the Aquarium of the Pacific on a Sunday, a day the 405 is generally less congested.
It’s been weeks since the physical therapist used that term, and I can’t stop thinking about it – “chronic congestion.”
It bothers me.
Because, what can we do about chronic congestion?
City planners haven’t figured it out when it comes to southern California’s freeways.
And, as of right now, doctors and physical therapists haven’t figured it out when it comes to my legs.
Without going into details, I have a medical test/procedure scheduled later this week.
Here’s what you should know:
I’m living with my autoimmune disease for almost 10 years now. In that time, I’ve already experienced this particular test twice. Each time the results were inconclusive.
The test is being done a third time mainly for comparison purposes. It’s been a few years since the last test, and doctors are interested in seeing if any changes show up this time around. There are some concerns that my left leg may be worsening. If so, this test may give some clues about what’s going on in my leg.
Aside from the fact that I don’t want to have this test in the first place, I’m not sure what to think about this test and its possible results.
Here’s the dilemma:
Do I want the test to reveal something? To pinpoint a reason why my leg pain is increasing and my leg strength is decreasing? Would this perhaps give doctors a lead, a clue, in terms of more effective treatment?
But what if my leg does test worse? What would that mean?
Or, do I want this test to be like every other test I take – indeterminate? Within the boundaries of normal-enough?
Which is reassuring I guess, but on the other hand it also means it provides doctors (and me) no answers, no explanations, no reasons why I feel the way I feel.
In reality the only thing I can realistically hope for is courage. Courage during the test. And courage after the test. In whatever form I may need it.
Here are a few passages I’d like to share with you:
“The reason I write memoir is to be able to see the experience itself in a new way. I hardly know what I think until I write. The therapy is one way of sort of processing things. But it’s only in writing about some of these things that we discover and understand the metaphors of our experience that give our life meaning. Writing is a way to organize your life, give it a frame, give it a structure, so that you can really see what it was that happened.” – Sue William Silverman
“I was a writer, and then this big thing happened in my family. And the way that I tend to try to understand things is through stories – both things that I write and things that I read. That’s the deepest way I know of expressing something inexpressible.” – Joan Wickersham
“You take what you’ve been through, and if you are a writer, you have to write about it.” – Suszanne Strempek Shea
“It really becomes memoir, though, when you open up space for others to enter – when it becomes about more than you, or your family, or your own personal feelings.” – Edwidge Danticat
“Don’t forget, it’s scarier not to do it than to do it.” – Abigail Thomas
Let me begin by saying, I believe all reading is good. Whether my son is reading a biography about Barack Obama, the latest edition of the Diary of a Wimpy Kid series, or a joke book, he’s an enthusiastic, eager reader. Reading is not a chore in our home. Ryan recognizes books for the true wonders they are.
So our bedtime reading varies. (Currently, we are re-reading a family favorite – Roald Dahl’s Matilda.)
But last week, each night before bed, we read some “weird but true” Christmas-related facts. Maybe it’s due to all my critical-thinking classes. Maybe it’s because I’ve been taught to not always accept things at face value, but to try and dig deeper and ask questions.
In any event, I have a really hard time readily accepting some of these statements as “fact.”
Although, this time around with this particular book, I found Ryan asking some follow-up questions as well. So maybe it’s not just me.
So on this Christmas day, I’d like to share a few of these questionable “weird but true” statements with you. Enjoy!
Wishing my readers a happy, cozy, festive holiday!
“The world’s biggest Christmas bauble ornament is wider than a garage door and as heavy as a buffalo.”(And I’d like to know who built such an ornament? Where is it?)
“The world’s largest Christmas pudding weighed more than a hippo.”(I’d like to know what one does with the world’s largest Christmas pudding. How and where was it made?)
“The world’s largest Christmas stocking measures as long as four school buses lined up end to end.”(Where is this stocking? Is it hung up each year?)
“The world’s largest wreath was wider than a soccer field and heavier than two elephants.”(What do you do with such a heavy wreath? How was it made? Where is it now?)
“The largest cup of hot chocolate ever made could have filled 20 bathtubs.”(We love hot chocolate, but there’s a limit. Who would think to make enough hot chocolate to fill multiple bathtubs? What was done with all that hot chocolate?)
Both authors live with autoimmune diseases. They’ve been there – dealing with the uncertainties that come with living with an autoimmune disease, the unpredictability, the sheer will it sometimes takes just to get through the day.
But, there were many times I came close to not finishing the book.
It was written in an overly simplistic, just-keep-going and make-some-changes kind of way. And that doesn’t work for everyone.
For my readers who don’t know, I was an elementary school teacher, before retiring due to a disability. I taught for 12 years. I had planned on teaching for many more. But teaching doesn’t provide many opportunities for flexible work hours or workplace modifications (topics discussed in this book).
However, even though I didn’t particularly like this book, I did find passages that caused me to pause for a moment and think, “Exactly.”
This week I’d like to share these passages with you.
“Autoimmune diseases are fickle, and what might adversely impact your symptoms one day might not affect you the next.”
“It takes determination to look at deceasing possibilities and refuse to crumble. It takes courage to face the loss of what you could do and see opportunity in its place.”
“Grief is an emotion that is often overlooked when talking about chronic illness, but it is critical to any discussion about living with AD – with translates into learning to live with loss. That’s not to say that there aren’t gains here, too. But loss is inevitable, even at the basic level of not being able to do or feel as you once did.”
“The truth is that no one knows what’s around the corner, but living with chronic illness means that unpredictable health is more likely.”
“On the days when you feel your worst, you can look fine. You don’t sport the red nose of a cold or the cast of a broken wrist to support your case. Because you look the same as you do on your good days, you wonder if people understand the symptoms that they cannot see.”
“It’s undeniably true: your illness has changed the way you view your world and your life. It has quite literally transformed your physical capabilities – at least for the short term – and has most likely altered your perception of yourself.”
My kitchen calendar is flipped to the last page. Which means it’s December, and the holiday season is upon us.
How do you celebrate? Do you make cookies? (I don’t.) Do you hang a Santa-wreath on your front door? (I do.)
What about gifts? Do you, my dear readers, have a favorite gift? Maybe a gift you received years ago, but one that is no less vivid in your memory? Or, a gift you regularly receive, but still eagerly anticipate each year?
And, if you turn to page 140, you will read “A Timeless Gift” — written by me! It’s my story of our family calendar and its place in our holiday traditions.
Here’s the first paragraph:
“My sister and I each received a new calendar every Christmas. And even though we shared a bedroom and could have shared a calendar, too,we always got our own.”
I’m so proud to say I have a piece published in a Chicken Soup for the Soul book. And I hope this charming book will help you get into the holiday spirit and maybe even inspire you with “new plans for family fun, gift ideas, and recipes.”
Each Wednesday, I publish a blog post on one of three subjects: books, boys, or bodies (specifically living with an invisible disability).
Beyond the post you read, though, there are the behind-the-scenes people that make this blog and this website possible.
Today, the day before Thanksgiving, I give thanks to:
My son.My eleven-year-old son is my greatest inspiration. The questions he asks and the ideas he shares have served as the inspiration for many of my blog posts and personal essays.
My husband.It was my husband who first encouraged me to start my own blog. It was right after we had seen the film Julie and Julia. It was the nudge I needed to start to prioritize my writing and my writing time. And, he often serves as my photographer for my blog posts.
My mom.My mom has always been my proofreader. Since I can first remember writing school reports back in fourth grade, it’s been my mom who checks my spelling, my punctuation, my grammar, my lucidness. Though I may be in my forties, and not a fourth-grader any more, I still look to my mom to proofread each blog post before it’s published.
My dad.Over the years, it’s been my dad who has shared his extra office supplies with me, which I gratefully accept. Every writer needs a stash of highlighters, binders, and printer paper.
My readers.I am proud to say I have readers around the world. People I know and people I don’t know. Some of you comment on the site, some of you send me personal emails commenting on something you read. A few of my former students have found me via this website and sent me emails recounting their memories in my classroom. Those emails make my heart swell.
My first blog started all those years ago, as a way to take my writing seriously. A self-imposed deadline. Since then, it’s become so much more than that.
Mainly, all the “extras.” The out-of-the-box, beyond-the-textbook things we used to do.
Like the way we celebrated Thanksgiving.
When I taught kindergarten, our class always hosted a multicultural feast. Hot dogs, turkey, spaghetti, sushi, mashed potatoes, empanadas – they all made their way to our feast. We made placemats and table centerpieces, and lined up our desks in long rows.
When I taught fourth and fifth grade, we still celebrated with a feast. But, for a few years, I did something extra.
I wrote each of my students a short letter about why I was thankful for each of them.
As a teacher, it’s so easy to get caught up in what went wrong, and easy to overlook when things are going smoothly.
But, it’s just as important to pay attention to those moments.
I don’t know if my students remember those letters, but I do.
Here are a few passages from the notes I wrote over the years. And maybe they will serve as inspiration to you. Make sure the people in your life know why you are thankful for them.
I am thankful for your participation. You are always eager to read aloud, answer questions, and share from your journal each morning.
I am thankful for your attentive listening. During lessons and discussions, I notice how closely you listen. I don’t have to worry that you’re not paying attention.
I am thankful for your positive attitude. You come to school each morning with a smile and a good mood. I really appreciate that.
I am thankful for your sense of humor. Your comments often make me smile, and sometimes laugh out loud. And there are days when we all really need to laugh. So thank you for that.
I am thankful for you taking responsibility for your actions. Even when you have chatted or done something you weren’t supposed to, you are quick to apologize and get right back to work. I appreciate that.
I am thankful for your positive attitude. You never give up. You are always trying to do better and learn more. I noticed that fractions were a bit tricky for you at first, but you kept practicing, and they got easier. You did it! I hope you know I’m proud of you for sticking with it.
I am thankful for your smile. You greet me each morning with a smile, you smile at me throughout the day during our lessons, and end the day with a smile. Your smile means a lot to me. Thank you!
I am thankful for your kindness. You are a good friend to your classmates. You offer to help them when they are having difficulties with a certain lesson, like the fractions and decimals we were doing. It was very generous of you to give up a recess to stay inside and help a friend with math.
I am thankful for all your computer help. You are our class computer expert. You help your classmates when they are having trouble with the computer. And you’ve helped me with the blue computer when it wasn’t printing. You are my computer hero!
I am thankful for the way you help your classmates. You are a fast and accurate mathematician. I really appreciate the way you walk around our classroom to offer assistance to your classmates who are still working on their math assignment.
I am thankful for your hugs. I love hugs, and it’s such a nice treat to receive one of your hugs. Sometimes you surprise me and all of a sudden I just have two arms wrapped around me! I hope you know how much your hugs mean to me!