Born and raised in Australia. Spent two years as a "virtual prisoner" in a fourth floor walk-up living with her mother unable to walk. Nanny to a rock star's children. Survivor of an abusive relationship. Tireless advocate for RA. Teacher at the United Nation's International School in New York City. Happily married. All these are Karen Ager, but there's much more to her story.
Enemy Within, Karen's memoir of her life with RA shares her psychological, physical and spiritual journey from early diagnosis to acceptance and advocacy. Karen has lived with RA for 30 years and in the book, she describes her life, exciting adventures, as well as the grimmer side of what RA can bring. Excerpts from her diaries and letters bring the story to life even more than her excellent prose. It is an inspiring read that creates the connection between the reader and the author of shared experiences, shared pain and shared growth.
Diagnosed at 17 with aggressive RA, Karen struggled with low self-esteem. Stuck in a relationship with an abusive boyfriend because she believed no other man could love her because of the disease, she ended up in the ICU with severe injuries. She lived through a horrendous flare at 24 that left her in a wheelchair, unable to walk or bathe herself. "When you see your body changing in front of you ... It's very painful as a 20-something-year-old to go through that. It truly, really devastates your self-esteem."
Karen hid her RA for many years, incorporating small tricks in her daily life to compensate, such as hiding her hands under the table when with others. "I didn't believe people would understand, didn't want to be defined by my illness ... It puts a lot of pressure on you," she says, but she continued hiding her RA, which was "a really destructive force in my body." At 28, her right hip was replaced - this was back in the days when hip replacements left you with a much longer scar than it does now and once, on the beach in Australia, someone asked her if she'd been attacked by a shark!
Catalysts for Change
Karen experienced many losses due to the disease, including not being able to have children despite a long course of IVF treatments. However, she feels these losses have been made up for by gains in other areas, "but it took me a long time to get there." She believes that this personal growth is "related to gratitude, to redefining what happiness is and what success is," as well as being "satisfied with what I've got and not with what I don't have."
She recounts three primary catalysts for this change. The first was sitting in her wheelchair in a government office and being told that they would approve her for what is in Australia called "an invalid pension" because they didn't "believe she would ever work again." Being told that she couldn't motivated her to prove that she indeed could - she decided that "I have to have hope and became determined to get back on my feet." She sought more aggressive treatment with a rheumatologist and although it took her a long time to get back on her feet after the big flare, she eventually succeeded and went back to work.
