• 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.

    • Jesse, so sorry to hear all this but I have complete faith that you will still find joy in teaching but on a different level than before. I know you will find something to give as you seem to me to be a giver. But as you mentioned asking for help is a big thing and I am glad you are giving yourself permission to ask and enjoy what you can do instead of what you can’t. Can’t wait to meet you in May when I tour Winters.

      • Kate

      • April 24, 2012 at 12:39 am
      • Reply

      A tremendous essay, Jesse: it’s both well-written and very moving.
      Your distinction between feeling good and feeling normal is an excellent one; I hadn’t thought in those terms before but that’s a good way of putting it.
      My heart goes out to you. Just because a decision is the right one to make doesn’t mean it is easy–and just because a decision is hard doesn’t mean it was wrong. Clearly deciding to step aside from something you love as much as you love teaching is quite difficult.

        • Jesse

        • April 28, 2012 at 9:04 pm
        • Reply

        Thank You. I love teaching. I love living a lot more.

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