My RA sister and I were talking the other day.  While we were commiserating, she noted that RA takes such a psychological toll on us as well as a physical one based on the choices you have to constantly make.  We talked about how your energy reserves are now very precious and you cannot do everything you used to be able to do. So, you have to make choices. And, these choices are not always easy.

Here’s an analogy to explain my point…

You have a leaky bucket, but you have many flowers to water.  Which flowers will you choose? You are losing water by the second, and you do not want your flowers to suffer.  You have to choose one over the other. Not because one flower is better. You simply do not have enough water to go around.

I think the hardest part for me is not everyone will understand the need to make these choices.  I look fine. I sound fine.  But, I have been bailing out on plans quite a bit lately.  I recently had an experience that forced me to re-calibrate my life for now.

The other week, I went to my brother’s 50th birthday party.  My side of the family got together and it was a wonderful time.  We laughed while my brother was opening his presents and took a picture of our mocked disgust while he read an inappropriate card. In the past, these celebratory times would rejuvenate me.  Being with my family used to be a boost. This time was different.

We only went to their house for a long weekend – virtually it was an up and back trip.  Yes, it was packed with activities, but nothing I couldn’t handle. Or, so I thought. I started feeling sick on the way home.  Really sick. So tired I couldn’t focus. My body was exhausted and it felt like I was coming down with the flu. I rested for the entire afternoon when we got home, but nothing seemed to relieve the deep malaise.  

The next two days were spent mostly in bed with an intermittent fever.  I missed work. I felt really frustrated; as if my body was not letting me do things, like a simple road trip.  Travel is very important to my husband and me. If I can’t do this minimal travel, how am I ever going to do our annual road trip this summer?  We take a two-week road trip every summer and our kids count down the days until we can go. I started reflecting about how different I was last summer and I lamented about taking my body for granted when it worked “right”.

However, for my own peace of mind, I need to realize that RA is not a punishment.  Find the light, Elizabeth. There has got to be a lesson in this condition. What is RA teaching me?

In making these difficult choices of where to go and what to do, I am learning to be mindful of my body and my constraints.  These constraints are irritating, but I really feel that they are also forcing me to live in the moment. When I am able to spend time with family and friends, I am grateful for the time with them.  I rarely waste my time anymore, as I am cognizant that I do not have unlimited energy.

I am also learning to mother myself.  After my mom died, I felt like I had lost my tenacious champion.  My mom was very protective and would go to great lengths to fight for her kids.  I need to be that champion for myself now. Arguably, there are tough choices. I cannot attend all of the parties, vacations, events that I really want to go to these days.  I disappoint my family and friends more regularly now.

But in the same vein of RA being an education, I am learning to advocate and stand up for myself.  I am channeling my inner mother. I cannot worry about who I will annoy or hurt. I need to gauge how much hurt I am willing to incur if I do this thing or that thing, and what attending that event will cost my family if I am down for the count.  These are not easy decisions.

So, is RA a present?  Should we be celebrating this new gift?  Well, I’m not going to go that far. However, RA is helping me to savor the moments.  I am thinking about what (or who) is right in front of me, rather than what I am going to do in the next hour, day, week or year.  I hope to become a better person, to myself and to others, as a result of this new normal.

As a child, my family called me Busy Beth as I was always into something. They shortened the nickname to Biz, and the name still fits. I am not content to just sit and am easily bored. The only time I am truly sedentary is when I am reading or writing. Even in that state of stillness, my mind is active and buzzing.    

Now, I have to slow down. My body can’t keep up with my usual pace. So, how does Busy Beth learn to slow down? That is the question with which I am wrestling.

Slowing down via meditation seems to be working. I am meditating to practice staying in the present. There is a wonderful application called Insight Timer. My favorite teacher on that application is Bethany Auriel-Hagan. She has a meditation called “Welcoming Acceptance.” I enjoy her soothing voice and her visualization techniques. In this meditation, she asks her students to imagine holding a bubble on their laps and putting the issue which they need to accept inside the bubble. While examining this issue/situation within the bubble, she explains, “acceptance is being with what is. Not liking it. Not fixing it. Just noticing and recognizing.”

Not fixing it? Just noticing? Sounds too pedestrian to me.

I recognize that acceptance is hard for me. I am a natural fixer. If something is not right, I will research to find solutions or will consult experts in the field. I teach a class called “Writing/Research in the Disciplines”. In that course, students work throughout the semester on a local problem they identify and create ideas for solution.  I explain to them, “problems are nothing without solutions. Talking about problems without providing some ideas for solutions is just whining.” Yes. I do say that. And, I wholeheartedly believed it. Until Rheumatoid Arthritis.

After my RA diagnosis, I am learning the tough lesson that there are problems without immediate solutions.  I cannot just fix myself right now, in my time. Enter acceptance…

My sister hates to see me struggle, so she sent me a book, Radical Acceptance by Tara Brach, Ph.D.  Brach writes that one aspect of Radical Acceptance is compassion. “Instead of resisting our feelings of fear or grief, we embrace our pain with the kindness of a mother holding her child. Compassion honors our experience; it allows us to be intimate with the life of this moment as it is” (Brach 28).

Are you sensing a pattern here? It seems as though acceptance is the only item on my menu, day and night. The word is all around me. Perhaps these constant reminders are providing some sort of guidance. In sewing, patterns guide someone to turn a piece of fabric into a work of art. A creation.  

There are times when I feel that I am creating a new self. One that is more aware, patient and understanding. Patience is an inside job these days, for sure. I am having to rely on help, and that reliance is uncomfortable to me. The other night, I fell asleep at 7:30pm, before the kids even went to bed. My husband noticed I did not put on my wrist braces before I went to sleep. Wrist braces help my hands and wrists feel better in the morning by mobilizing my joints while I sleep. He gently took my hands and put my braces on. My usual pattern is to chastise myself for not remembering to put on my braces.  I should have been able to do this myself! Instead, I shut that voice up inside my head and leaned into accepting the assistance without the usual resistance. I resigned myself to the fact of it is what it is.

I am recognizing I need to be with what is. So, what is this?

It’s feeling like an odyssey – a physical and surprisingly emotional trip I did not choose to take.  There are lessons, but I am not always sure what they are teaching me. Pain is an excellent teacher because it demands your attention and fatigue is relentless.  The old patterns of response do not work. Pushing through and just getting over it are no longer the solution. The drive now is to look for a new approach.

As Joan Didion said about having to reinvent her work before finishing a book:

“Sometimes you can get away with things in the middle of a book… I wanted a dense texture, and so I kept throwing stuff into it, making promises. For example, I promised a revolution. Finally, when I got within twenty pages of the end, I realized I still hadn’t delivered this revolution. I had a lot of threads, and I’d overlooked this one. So then I had to go back and lay in the preparation for the revolution. Putting in that revolution was like setting in a sleeve. Do you know what I mean? Do you sew? I mean I had to work that revolution in on the bias, had to ease out the wrinkles with my fingers.”

It could be that pain is the pattern that guides my own revolution.

Blue Skies

Smiling at me

Nothing but blue skies

Do I see

-“Blue Skies” by Irving Berlin

I take an obscene amount of sky pictures.  If you are friends with me on Facebook or Instagram, you will see several of my celestial observations in full color.  Even my daughter is in on the act. She woke me up last Saturday morning at daybreak to tell me that Grammy painted pictures in the sky for me to see.  Her Grammy, my mother, died in 2016, so it was especially touching for her to make that observation.

Why the sky?  I guess I have always been looking up.

In our childhood, we took a lot of road trips.  Dad didn’t (and still doesn’t) like to fly. So, we would hit the road.  On these trips, my brother would have his nose in a book the whole ride. I would be so jealous of him because if I read in the car, I’d wind up throwing up in the appointed garbage bag, affectionately known as the “barf bag”, my mom always brought with us.  You see, car sickness ran rampant in my family. My sister would be listening to David Bowie on her Walkman and I would be laying down with the luggage in the way back of the station wagon naming the things I saw in the clouds. “There’s a dog! There’s a bunny!  That looks like Uncle George!”

As I got older, I realized the sky gave me two gifts- an instant sense of connection and beauty.

I went on a term abroad when I was in college and taught ESL in graduate school in Hungary for a short time.  Even though I was very far away from home, I would look up and picture my family looking at the same sky from our house in upstate New York.  It gave me comfort to feel connected to my loved ones, while seeing something familiar in a place so strange to me at the time.

The sky connects us all.  We all know what the sky looks like at dawn and dusk.  We have an instant recognition of these images in literature and film.  Those pink and purple hues seem to quietly wake us up or calmly put us to sleep.  The sky puts on quite a show of beauty for everyone. It is a consistent source of light and color on which we can depend.

Many people take the sky for granted.  We are frantically conducting the business of  our everyday lives while the palette above our heads beckons for attention.  It is a practice of mindfulness to pause and observe nature’s entertainment.

Perhaps I have been taking too many sky pictures lately.  I find it immensely comforting to be able to access inspiration simply turning my head upward.