Lupus and the winding road to retirement
by Jesse Loren
There is a clear difference between feeling good and feeling normal. Right now, I feel good. I have hope. When I go to bed, I am excited about the opportunities for tomorrow. I will plant. Things will grow. My garden will be full of miracles. That’s right, miracles. I might plant two rows in a day or five, or stay in bed for 17 hours. However, the sun will also rise.
It doesn’t mean I can do my job. It doesn’t mean I am normal. But I have hope.
Sometimes the brain-farts are small. Today, I planned out a grid on the garden beds. While planting different parts of the grid, I couldn’t remember what was done or undone. Seeds aren’t as obvious as plants. These were lettuce seeds. They are quiet and tiny like dirt itself. It didn’t alarm my 10-year-old companion when I couldn’t remember the preceding minutes. Ten year olds are kind. A class of 39 high school kids would have rolled their collective eyes. Some would be kind, while others would plot how to exploit the memory weakness. I have significant lapses.
Lupus has done something to my central nervous system. I lose my balance often. I have had numerous temporary blindness moments where things go dark and I can’t remember why I am where I am. So far, I have not been in danger. Whatever those episodes of disease activity, I am just not capable of following through on the daily expectation. I am just not capable of remembering.
It’s weird. It doesn’t mean I have forgotten how to use a shovel. It doesn’t mean I can’t get milk at the store. It does mean I feel faint sometimes. It does mean I usually take a friend or go places with others. I have blank outs, and sometimes it is coupled with joint pain, like a pain suit. Right now after three weeks of prednisone, my swelling is manageable. I am not as depressed as I was before the prednisone. I feel hopeful about the garden and surrounding myself with beauty. Yet, I miss teaching.
Teaching, although underpaid and underappreciated, is something I love. I love those energetic teenagers. While love is nurturing, it isn’t arduous, nor does it scaffold educational expectations. Love or faith should never guide learning. Clear objectives and lesson planning should.
It’s a cold, hard reality. My love for kids doesn’t mean I am capable of planning and executing curriculum. And maybe it is because of love, principle and respect for my teaching duties, I know it’s time to step aside.
I couldn’t respect myself if I was one of those people who came to work everyday just to collect a paycheck. I love learning and want students to flourish!
Lupus pain moves around. It might be my hands one day, my hips and knees the next. It might be I feel good, but I can’t remember what I am supposed to be doing or what I have done. It could be nephritis or pleurisy, but it is all due to lupus. Lupus is a wolf in the immune system. A trickster. I have the ability to conjure and think of lessons, but little ability to execute them. I am pretty savvy in the present tense, but future or remembering the past — both are fading.
So what if you wake up one day and you find out your brain is changing and you just won’t ever be the same? For me, I’m trying to focus on what I can do, not what I can’t. I am going to do my best to compensate for what I lack, and I’m going to ask for help when I need help. Lastly, I have become more tolerant of others and more tolerant of myself. I am grateful for that.