RIP RBG

Back in May 2019, I wrote the post below.

Now, in September 2020, I must add:

Thank you.

Thank you, Ruth Bader Ginsburg. 

Thank you for what you have done. 

Thank you for serving as an inspiration and a role model.

May we make you proud.

 

(Written and first published on this blog in May 2019)

It began like this:

I heard some things.  I read some things.  I liked those things.  I learned some more.  And now I, like countless others, proudly declare my admiration and respect for Supreme Court Justice Ruth Bader Ginsburg.

Back in March, my husband and I visited the Skirball Cultural Center to see the exhibition Notorious RBG: The Life and Times of Ruth Bader Ginsburg.  I was in awe of all this remarkable woman has accomplished, and I was astounded by all that I didn’t know.

We then watched the RBG documentary, and my interest continued to grow. 

Now I just finished reading Notorious RBG: The Life and Times of Ruth Bader Ginsburg by Irin Carmon and Shana Knizhnik.

You can read the book, watch the film, and learn the facts.  But here are a few things that are staying with me:

  1. This woman doesn’t stop.  No matter what.  Two bouts with cancer.  The death of her husband.  She still keeps going, keeps fighting.  Going to work, fighting for equality. 
  2. Looks can be deceiving.  Upon first glance, you may think RBG is just a small little woman.  Don’t be fooled.  She’s powerful in mind, body, and spirit.  (The woman works out with a personal trainer twice a week.)
  3. Theirs was a beautiful marriage, a union of true partners.  (RBG’s husband, Marty, passed away in 2010. They were married for 56 years and knew each other for 60.)
  4. RBG always sees the bigger picture:  I think gender discrimination is bad for everyone, it’s bad for men, it’s bad for children.  Having the opportunity to be part of that change is tremendously satisfying.  Think of how the Constitution begins.  ‘We the people of the united States in order to form a perfect union.’  But we’re still striving for that more perfect union.  And one of the perfections is for the ‘we the people’ to include an ever enlarged group.”

A Joyful Read

One of my favorite fiction authors is Katherine Center. I eagerly await her books. But then a funny thing happens. Once I buy her newest book, I hesitate to start reading it. Because once I start reading, it’s hard to stop. And if I read too quickly, I’ll finish the book too quickly. 

Ms. Center’s latest novel, What You Wish For,  was no different. It made me smile. It made me laugh. It made me cry. It made me bite my lip. And it made me look up George Michael’s “Freedom! ‘90,” and play the sample on the iTunes store. (page 234, if you’re curious)

This week, allow me to share some of my favorite passages with you:

“Joy is an antidote to fear. To anger. To boredom. To sorrow.”
“But you just can’t decide to feel joyful.”
“True. But you can decide to do something joyful. You can hug somebody. Or crank up the radio. Or watch a funny movie. Or tickle somebody. Or lip-synch your favorite song. Or buy the person behind you at Starbucks a coffee. Or wear a flower hat to work.”

 

You really have to read the description of the school library (page 107) to become fully enchanted, but meanwhile I’ll share this bit with you:

“I wanted to make sure that if kids felt an impulse at any moment to pop by the library, there’d be nothing to stop them. It was the best way I knew to turn them into readers: to catch those little sparks when they happened and turn them into flames.”

 

“I’m not happy because it comes easily to me. I bite and scratch and claw my way toward happiness every day.”
“It’s a choice. A choice to value the good things that matter. A choice to rise above everything that could pull you down. A choice to look misery right in the eyes … and then give it the finger.”
“It’s a deliberate kind of joy. It’s a conscious kind of joy. It’s joy on purpose.”
“I’m telling you. I know all about darkness. That’s why I am so hell-bent, every damn day, on looking for the light.”

“Life doesn’t ever give you what you want just the way you want it. Life doesn’t ever make things easy. How dare you demand that happiness should be yours without any sacrifice – without any courage? What an incredibly spoiled idea – that anything should come easy? Love makes you better because it’s hard. Taking risks makes you better because it’s terrifying. That’s how it works. You’ll never get anything that matters without earning it. And even what you get, you won’t get to keep. Joy is fleeting. Nothing lasts. That’s exactly what courage is. Knowing all that going in – and going in anyway.” 

Pain Isn’t a Once-a-Year Topic for Me

 

Sometimes it’s hard to look at my legs with gratitude for all they can still do.

 

September is Pain Awareness Month, a “time when various organizations work to raise public awareness of issues in the area of pain and pain management.” 

Have you ever seen that 1-10 pain scale? The one doctors show you, with a range of facial expressions? 

I don’t like that scale. And I don’t like being asked to rate my pain. 

I remember a visit to a pain management doctor. During the intake, the nurse asked me to rate my pain, right then in that moment. I refused. 

I’m usually a very compliant patient, obedient and direction-following.

But, let’s face it. After 10 years of living with my autoimmune disease, I’ve gotten really good at pushing through the pain. I have to. As a result, my pain scale most likely doesn’t look the same as yours. What I now consider a 6, my husband would probably classify as a 10. 

Here’s what I can tell you about my pain. It fluctuates. And not just day-to-day. Sometimes hour-to-hour, even minute-to-minute.

In the interest of pain awareness, I thought I’d share just a bit of what my pain is like.

  Sometimes, my left calf is tight. That tight feeling you get before, during, and after a muscle cramp. Except my tightness lingers. For hours.

  Sometimes I don’t have pain. I have a general heaviness. My now twelve-year-old son and I used to play “squish” when he was younger. It was a wrestling-type game that happened either on the floor or on my bed. We’d tickle, but generally he would end up “squishing” me – pinning me with his body. That’s how I feel. Like I’m walking around, cooking dinner, watering my plants, and I have an invisible child strapped across my legs, weighing me down.

  Sometimes I have a throbbing pain. You know that pain you get when you’ve bumped into the sharp corner of a table? You can’t see a bruise, but the area is sore and sensitive and just hurts.

  Sometimes I just hurt. Like I’ve been pricked with needles (and I have been, so I know what it feels like). My calf is sensitive, and I have to roll up my pants so the fabric doesn’t touch my skin.

  Sometimes the pain is rocking-back-and-forth, pulling-at-my-hair kind of pain. Sometimes it just randomly hits. Sometimes I know it’s coming. My calf muscle may begin twitching. On certain occasions, I can even see it moving. It makes me think of when I was pregnant, and my husband and I would joyously watch my stomach move when our son would turn or stretch. There is nothing joyous about this though.

  Sometimes my leg feels twisted somehow. As if someone took my muscle and twisted it, the way you wring out a washcloth. And simple things, like bending to pull something off the bottom shelf of the fridge, or bending down to pick up the mail off the floor, or standing on my toes to reach the colander from the shelf in the kitchen, aren’t so simple for me to do.

And I could go on. 

I don’t want pity. Don’t feel sorry for me. 

Feel compassion and kindness and patience for everyone you encounter. Because you never really know someone else’s pain.

 

The Article I Wish I’d Read After My UCTD Diagnosis

The first thing most people do when they have any sort of medical-related question is head to Google.

We Google symptoms and try to self-diagnosis. We search for causes and treatments.

Then you get a diagnosis and head back to Google. What does the diagnosis mean? How are others living with this particular illness? What adjustments are needed? What does the day-to-day look like?

That’s what I did, back in November 2011, when I received my autoimmune disease diagnosis. 

Except Google didn’t have a lot of resources available. My autoimmune condition is rare, and there wasn’t a whole lot of available information out there.

Click here to be re-directed to TheMighty.com to read my recently published essay, “The Article I Wish I’d Read After My Undifferentiated Connective Tissue Disease Diagnosis.”