I’ve got an autoimmune disease. But, life could be worse. Much worse. In the year and four months it took to get a diagnosis, I saw a series of doctors: a neurologist, a rheumatologist, a geneticist, an ophthalmologist, a vascular surgeon. I endured a multitude of lab tests, ultrasounds, X-rays, MRIs, and CT Scans, while doctors tried to determine what was wrong with me. One doctor went so far to tell me that all my test results showed something was not quite right but she just wasn’t sure what it was; the results weren’t “wrong enough.” I was told I could be suffering from multiple sclerosis, cancer, leukemia.
My current doctor (the only one who could finally figure out my medical mystery) scheduled my appointment for one morning before school. I figured that whatever he had to tell me couldn’t be too awful if he was planning on telling me less than an hour before I had to go teach fourth grade. So when he told me I suffered from an autoimmune disease, I breathed a sigh of relief. It wasn’t fatal. I was going to be around to watch my son grow up. (At the time of my diagnosis, Ryan was 3 1/2 years old).
At first, I thought having this disorder would simply be something I’d learn to live with, much like my asthma. How wrong I was. Less than two years after I was diagnosed, I had to give up teaching. Two years after I left my classroom, I’m not quite as upset about not teaching. In a way, I am still teaching. I’m teaching Ryan. I’m helping him write a letter to President Obama. I’m watching caterpillars evolve into butterflies. And I’m teaching him without having to worry about report cards, cumulative records, and Tuesday professional developments.
But these last few weeks have been really hard for me. Relatively simple, ordinary activities have been increasingly difficult for me. My weekly trip to Ralphs has caused me a great deal of pain. I had to move a few of my mixing bowls because standing on my tip-toes to reach them from a high shelf was proving to be too difficult for me. And our yearly family trip to the Aquarium of the Pacific left me fatigued and in pain.
I’m increasingly worried about the regular things that I fear may be taken from me, that there is no real substitute for. I may not be able to teach any more, but I can volunteer in Ryan’s classroom. I can help him with his homework and grab a book I have from the closet to help reinforce a specific concept.
Because even though I still “can” go to the Aquarium, this year it wasn’t as pleasurable for me. I bit my lip, trying to contain my discomfort, not wanting to put a damper on my family’s spirits as Ryan touched a stingray and a shark for the first time. But if I can’t go to the Aquarium (like I have every year since the day in 2007when I found out I was pregnant), there’s no way for me to settle for something else.
I have this internal struggle with myself because I feel as if I don’t have the right to complain about my pain, my discomfort, my frustrations. Things could be worse. In fact, things are much worse for many people.
Several weeks ago, I wrote about a sentence I had read in Chronic Resilience, one of the books I’m currently reading. (Here’s the link in case you missed it: http://wendykennar.blogspot.com/2015/07/hoping-to-become-more-kick-ass-me.html)
But the truth is, instead of feeling more “kick ass,” I’m feeling as if I’m getting my ass kicked. Day after day.