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.
My son graduated from elementary school three weeks ago, and since then we have been to: the GRAMMY Museum, the Getty Center, the Aquarium of the Pacific, Discovery Cube Los Angeles, miniature golfing, the library, and the beach (twice).
The one that did me in, that almost brought me to tears (of pain and sadness and frustration) was our visit to The Huntington Library, Art Collections, and Botanical Gardens.
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.