I've been a reader since before I can remember, and whenever I have a concern, a challenge or a new situation, I turn to books. After my diagnosis with Rheumatoid Arthritis, I turned to Amazon and began looking through titles. Because there has been so much progress in the medications in recent years, I only considered books published fairly recently. The first one I read was reviewed here. Written by a doctor with some assistance, it intends to empower patients by enhancing their knowledge, but it's full of depressing patient stories.
The First Year: Rheumatoid Arthritis: An Essential Guide for the Newly Diagnosed, by M.E.A. McNeil, carries another subtitle attached to its series–"A Patient-Expert Walks You Through Everything You Need to Learn and Do." The difference here is in that "patient-expert" involvement. M.E.A. McNeil is probably my new hero. First diagnosed before the new medications became available, she lived one of those nightmare stories (bedridden, wheelchair-bound), but responded well to the new treatments and has a more active life now. When she tells you to balance rest and exercise, you believe it, because she is speaking from inside the condition, not looking down on it from on high or from so far outside that it's a concept rather than a reality. She is a scholar, an author, a mom and a wife, a person who knows what it feels like to clean the house or to wonder if you'll be able to do your life's work the way you had hoped.
In some ways it's like What to Expect, a series I loved back in the day when I was having babies because it was so matter-of-fact, even about awful possibilities. McNeil's writing encourages while being realistic. I found it very helpful. Here's the quote I found most helpful, so much so that it's in the sidebar :
"Useful metaphors for RA are those that don't hold us at fault."
Yes. I'm reading Sontag at the moment, but I'm still not ready to give up on metaphors completely. As I said in a comment on a recent post, I'm still working on finding mine. I can't make sense of this, or find a reason for it, but I can try to find a way to live with it that helps me do as well as possible under the circumstances. McNeil is helping. I can see this is a book to which I will refer, often.