To celebrate – the day; the power of books; and those of us who find comfort, knowledge, and entertainment between their pages; I’d like to share with you books I have found helpful, inspirational, and just plain good.Books I have turned to (some of them more than once) as I navigate this journey of living with an invisible disability.
– The Gratitude Diaries by Janice Kaplan.You can click here to read my blog post citing some of the passages that most touched me.
– Chronic Resilience by Danea Horn.This is one of the few books I ordered from Amazon without ever having seen a physical copy of the book.I’m so glad I did.I’ve read it a few times now.
– Year of Yes by Shonda Rhimes.You can click here to read the blog post I wrote while in the middle of reading this book. I will tell you that this was one of those books that started conversations among people I didn’t know, people who saw me carrying this book and reading this book and felt a connection to it as well.
I’m the proud mother of an 11-year-old son. I’m quick to boast, and tell you about Ryan’s curiosity (he asked me what the nurse does with his blood after a blood test.In all my years, I had never thought to wonder). I’m quick to brag about his kind heart (without prompting, the way Ryan holds Grandpa’s hand while walking through a museum, and slows his steps down to match Grandpa’s). I’ll smile and tell you how Ryan loves to dance and sing and is equally entertained by the Beatles, Stevie Wonder, Justin Timberlake, and Prince.
But I’m not as quick to talk about myself. I don’t immediately tell people about my invisible disability, the rare autoimmune disease coursing through my body (and on bad days, I think it’s cursing my body). It’s called Undifferentiated Connective Tissue Disease and has overlapping symptoms of lupus, myositis, and rheumatoid arthritis.
Those words begin an essay recently published at Mother’s Day Magazine.I have been living with my autoimmune disease for nine years.There are moments when I think I’ve figured things out, I’ve got a handle on things.And then there are the moments when I feel so confused, so sad, so frightened, so much pain that I just want to sink to the floor and cry.
But I can’t.
Because I have an 11-year-old son who needs to be fed; who needs to be taken to school, the library, and the dentist; who needs me.
So, I have developed a few “tricks and tips” that help me get through the day.Click here to read “10 Tips and Tricks for Moms Living with Invisible Disabilities.”(Here’s one I’ll share right now – Eggo Waffles count as dinner.)
This week, I have a story to tell you about a failed relationship.
We “were set-up, kinda, sorta like a blind date. Actually, more like when your friend dates somebody and then realizes you should be dating them instead.”
It wasn’t an easy relationship.
“I didn’t want to give up on us.I wanted to stick it out, because that’s what you do in a long-term relationship.You don’t walk away the first time things are hard or unpleasant or uncomfortable.You try to work on it and work it out.You try again.”
But ultimately I had a “healthy breakup” – from my Fitbit.
For the whole story, click here to be re-directed to The Mighty and read my recently published personal essay “Why I Broke Up With My Fitbit.”
I think it’s weird when I walk into Trader Joe’s and find there are no flowers for sale.
I think it’s weird when I’m scanning through the radio stations in the car and hear the same song playing on two different stations at the same time.
You may think it’s weird that I even listen to the radio.
Back in September of 2018, I wrote a blog post after my rheumatologist called me weird.
This week, it’s a blog post about a different doctor but the same adjective.
I met with a doctor specializing in chronic pain management.I didn’t go into the appointment with very high hopes.After all the doctors I’ve already met with and all the tests I’ve already had, what could this doctor have to tell me?
Well, she told me that my pain doesn’t follow predictable patterns.
I knew that.
She told me she’s not quite certain what’s going on in my body.
Next week, marks the ninth anniversary of my life with an autoimmune disease.
Although at the time, we didn’t realize we were dealing with a permanent situation.My left calf was swollen.We thought a visit to the emergency room would make it somehow become un-swollen, and that would be that.
How wrong we were.
9 years later, a lot has changed.I’m no longer a classroom teacher.
But the part that hasn’t changed is my desire to be an active, engaged, loving mother.For me, that means I make chocolate chip cookies for dessert a few times a week.(Disclaimer – they’re the Pillsbury, pull-apart-and-bake-kind.)And for me, that means every summer is full of what a friend of mine refers to as “field trips.”
My son and I (sometimes with my husband, sometimes with my dad, and oftentimes just the two of us), venture around the city exploring different venues and museums.
We hadn’t been there in many years.So many years, in fact, that Ryan had no memory of having been there before.My husband, son, and I explored for about two-and-a-half hours.That’s all my legs could do, and that’s all Ryan could do before his energy decreased and his appetite increased, and he was ready to leave.
I loved being there.Marveling at one of my favorite paintings, Pinkie, enjoying the colorful sight of the rose garden, thinking of my pen pal while in the Japanese Garden, smiling as we stood beside the lily ponds.
But we didn’t see all the Huntington has to offer.
I couldn’t walk any more.The pain was intense.My knees felt as if someone had whacked them with hammers.My legs felt weighted down.My shoes felt like they had magnets attaching me to the ground, making it hard for me to lift my foot and take a step.
And yet, I had wanted to go there.
I had wanted our family to have this special day’s experience.
But I felt awful, until I went to sleep that night.
Was I glad I went?Yes.
Do I want to go back?Yes and no.
How much pain do I put myself in, how much do I push myself to see, to smell, to touch, to hear all that I wish to experience even when I know that it is physically difficult for me to do?
Nine years, and I still don’t have the answer to that question.
Do you remember what you said when people used to ask you, “What do you want to be when you grow up?”
For many years of my childhood, I always answered the same way.
Now, people (friends, neighbors, grocery store clerks) ask my eleven-year-old son.
Sometimes Ryan’s answer resembles a long list of dream jobs.He rattles them off, one after the other.“Doctor.Firefighter.Astronaut.Basketball Player.Singer.”
Other times, Ryan narrows it down to one career.“Professional singer” or “NBA Player.”
I’m in the middle of Michelle Obama’s riveting memoir Becoming.A friend of mine gifted it to me at Christmas, but I have put off reading it.I savored the idea of the book.I wanted to prolong the joy and inspiration I felt certain this book would bring.
And I was right.
Because from the get-go, the first page of the preface in fact, Michelle Obama nailed it.
“Now I think it’s one of the most useless questions an adult can ask a child – What do you want to be when you grow up?As if growing up is finite.As if at some point you become something and that’s the end.”
Every chance I get, I remind Ryan that he doesn’t have to choose one career.
I remind him that former First Lady Michelle Obama held many roles.In her words:“I’ve been a lawyer.I’ve been a vice president at a hospital and the director of a nonprofit that helps young people build meaningful careers.I’ve been a working-class black student at a fancy mostly white college.”
During high school, I got tired of the question.When asked what I wanted to be, I simply answered, “Happy.”And I enjoyed a twelve-year teaching career.
Whatever path Ryan chooses, whatever bends or forks in the road that he must navigate, I hope he adds “happy” to the list of all he’ll become.
Just For Fun:
And because I love Michelle Obama, think she’s a fantastic role model and a fun lady, let me share three of our favorite YouTube videos featuring Michelle Obama and Jimmy Fallon in case you haven’t seen them.And even if you have seen them, they’re always fun to watch again.
It’s a catch-all phrase representing the lack of learning that happens during summer vacation.The time when children aren’t actively engaged, aren’t learning, aren’t practicing what they’ve already learned, and aren’t reading.
I’m proud to say it’s not an issue in our house.
And don’t think that means I’m bragging.
And please don’t think that means I have my eleven-year-old son sitting down, completing worksheets and practice books.
Because I don’t.
It’s just that in our house, there is always some sort of learning or practicing going on.My son is, thankfully, an enthusiastic reader.
I like to think it’s because my husband and I read Goodnight Moon to him each night as soon as I found out I was pregnant.I like to think it’s because my son is growing up knowing books are valuable and special and important.Ryan receives a book on each birthday, at the start of each school year, and scattered throughout the year for different occasions and holidays.
The summer reading program through the public library is a different matter.That one requires Ryan to track the number of hours he reads.And that’s the tricky part for us.I can easily count the minutes we read at bedtime each night.(This week, it’s a family-favorite:Because of Winn-Dixie.)
But it’s because reading is such an integrated part of our family that it’s all the other moments that are harder to keep track of.
I came downstairs the other day to find Ryan quietly sitting on the couch, reading CD liner notes.A few days ago, we browsed in our local book store, picking up random books, reading the back covers and the first few pages of books that caught our interest.Sunday mornings, Ryan scans the sports page looking for news about his favorite basketball team.
It all counts as reading.It’s just hard to count.
In an effort not to drain my brain this summer, we’ll just make an estimate.
Do you ever feel stuck?Like each day sort of just creeps into the next.
Do you ever feel lost?Like you’re not quite sure what you’re doing or why you’re doing it.
Do you ever feel like you’re in search of a spark?Like there’s something out there, waiting for you, and if you could find it your whole life would experience a domino-effect of positive consequences.
I do.Sometimes.Sometimes it’s because I’m 43 years old, and my body feels much older and weaker than my chronological age.Sometimes it’s because I miss my teaching career.
Which is why I enjoyed the last fiction book I read, Debbie Macomber’s Twenty Wishes.
The title is based on the premise of the novel.A group of women each decide to create a list – “an inventory of wishes.”Not practical to-do items, but “twenty dreams written down.”Each woman had a different list of “wishes and hopes for the future.”One character wanted to learn to belly dance.Another character bought herself a convertible.Still another desired a pair of red cowboy boots.
While reading about these women and their wishes, I thought about what would be on my list of wishes.
– Visit my pen pal, Aya, in Japan.
– Travel to Paris with my husband and son.
– Drive a convertible – with the top down.
– Go for a gondola ride in Venice, Italy.
– Explore the Kennedy Space Center in Florida.
– Sightsee in New York including stops at the Statue of Liberty and Empire State Building.
Writing my own list is more difficult than I thought it would be.As one character so aptly stated, “Sometimes I think we’re afraid to admit we want certain things.Especially things that contradict the image we have of ourselves.”
I’m still working on my list.Most of my items have to do with travel, and it’s not so easy for me to just pack up and go.So I need to work on creating a list that also includes items that are more easily achieved here in Los Angeles (and not as expensive as traveling to Japan).
Meanwhile, those are mine.Readers, I’d love to read your wishes.Feel free to share in the comments section.