Earlier this week, I saw a new neurologist. We hit it off right away (that hardly EVER happens with neurologists!). This is a neurologist who is completely open to the topic and diagnosis of chronic Lyme disease*. This is a neurologist who told me she could see my illness. While my Lyme symptoms are technically invisible, there are a few discerning people who can see them in me—in the exhaustion written on my face, in my struggle at times to speak/think with clarity. She noted that while my eyes are bright (lively, cheerful), she sees that I fight to keep going. She is a rare gem indeed. As she was going over my history and my neurological symptoms related to Lyme, she said offhandedly, "So I assume you are disabled from the State?" In her work, she treats many Veterans who are truly disabled.
Loved ones with all good intentions have suggested that I look into becoming declared disabled (I assume so that I can collect money). They see the difficulties I face. They see the difficulties my husband faces as he tackles many of our household chores, and as he drives his exhausted Miss Daisy (that would be me) arouind, as he works from home which, in itself, is a 24/7 job.
My reply to my neurologist was, "But I don't want to be disabled." Alone, that is not a good enough reason—I don't want Lyme; I don't want to weigh twenty pounds more than I should weigh; I don't want to ask for help when I need it; I don't want lots of things! But I quickly added: "I can work. I work from home. I can't teach the night classes I used to teach, but I can work. I ...."—explaining to her what it is that I do.
I publish a poetry magazine. I edit books. I take photographs and sell greeting cards with my nature photographs on them. I do whatever it is I can do...around my Lyme disease, according to my physical and cognitive limitations.
I don't begrudge anyone disability who needs it. That's what it is for. My first comment to my husband after our meeting with the neurologist was, "My father was disabled." And he was. As described in my last post, my father was disabled with polio to the extent of not being able to use his arms—or breathe on his own. He collected disability. But he also learned how to write by holding a pen in his mouth. And he taught me never to take what wasn't mine and never to take what I didn't need. I may need that kind of help someday. I could even need it tomorrow. But so many, many people need it today.
And I am recovering. I have cyclical backslides (a part of living with Lyme) but overall, I am becoming my old self. On the good days, I feel it, see it, taste it. Until the old self is back to stay, I'm going to try and focus on my abilities and not my inabilities.
*Speaking of doctors who are open to discussing and treating chronic Lyme disease, check out this newly-released book by Burton A. Waisbren Sr. MD FACP FIDSA. Dr. Waisbren, Sr. is a founding member of the ISDA (the prestigious medical group that looks down on Lyme-literate doctors who treat chronic Lyme and who diagnose Lyme based on criteria other than the current unreliable, exclusionary guidelines). This book will lend much credence to our cause!
