2. When faced with similar situations, how do you feel, act, or think?
3. What would you most like to remember from this chapter?
4. What can you do going forward to view your diagnosis in a more positive light?
5. How do you feel, now, when you think back to the time of your diagnosis?
6. With your new perspective, how will you deal with feelings of unfairness from now on?
7. Look back at the notes you made before you read this chapter. Have your thoughts changed after reading the chapter? If so, how? What realizations are you most grateful for?
Pigtails and Knobby Knees: Learning to Overcome
Take Stock of Where You Are Now
Transformations often begin with a radical decision. Answer the following questions about life-changing decisions in your journal.
1. Name a time when you changed a habit or trait that no longer served you.
2. What did you do to change the habit or trait?
3. How did you feel about the decision?
4. What was the experience of change like (easy or difficult) once you made the decision?
5. What parts of your life have been altered due to your health?
6. Describe any tough decisions you’ve had to make to change your chosen path. How do you feel about those decisions?
7. If there were another area in your life in which you could make a powerful, path-altering decision, what would it be? How do you feel when you think about making that change?
The Wonderful Pieces of Divinity I Have Found
You are stronger than you know, even if you have to dig deep to find it.
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You can do anything you put your mind to.
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Be grateful for the life you have.
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Having autoimmunity helps you slow down.
This is a good thing.
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Money isn’t everything.
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Your planned career may not have been your life purpose; find your path by listening to life as it presents itself.
I was that awkward, shy, creative, pigtailed girl with her nose stuck in a book on the playground. The middle of three kids, I was quiet and didn’t really understand other people’s jokes. I tried to be nice to everyone and while I wanted to have a lot of friends, whenever I found myself in a crowd of kids I just wanted to be left alone. The only place I felt truly comfortable was with my family. This shyness would play a huge role in my ability to manage my health later in life.
Mom stayed home and chauffeured the three of us around, as mothers do, until she became a teacher when I was in third grade. She liked to sew a lot. She enjoyed decorating and sewing, making some of our clothes and all of our Halloween costumes. We could dress up as whomever and whatever we wanted: a mermaid, a bride, a pumpkin, you name it. Today I love making my own daughter’s Halloween costumes, thanks to those wonderful memories.
Dad worked in construction and would smell of sweat and bitter asphalt when he came home. We had a few dogs over the years and an above-ground swimming pool with a wooden deck that my dad and some neighbors built with their own hands and, likely, a few beers. Dad always had some home improvement project going on, including once cutting a hole in the ceiling to relocate our bedrooms in the attic; five years later we finally moved into those new rooms. My parents still can’t agree on whose ideas the home construction projects were, but suffice it to say our life was a constant adventure.
Mom and Dad worked hard to give us what we needed, and we had a fun-filled childhood. We played games, rode bikes, and had movie nights. We knew we were loved; we never doubted that, ever.
My grandparents lived one block from my school, so I saw my grandma every day. She was only four-foot-ten but had a personality that filled the entire room. Sometimes I pretended to be sick just to get a day alone with Grandma without my siblings. I would lie on her sofa and watch her “soapies” with her. Since I was sick, I wasn’t allowed to get up and play; of course, she knew if I was faking, but I don’t think she cared. She would make me grilled cheese or egg salad sandwiches, or whatever my current favorite food was. When Mom came home those evenings, Grandma would be the one who was hoarse because I had talked her ear off all day, forcing her to keep up.
I was an overachiever and harder on myself than my parents were when I didn’t do as well as I wanted in school. Books were my best friends. I would sneak off to the bathroom to read, rather than help clean on Saturdays. On road trips I would read an entire book in a couple of hours. We had to bring a bag of books for me alone if it was a long drive.
I remained painfully shy all through high school, and though I had a core group of close friends, I never did become the social butterfly my family believed I was.
One day our family welcomed my sweet nephew, Rickey. Since he lived with us, I had the pleasure of seeing him every day, and he brought an unrivaled light and joy to my life. His existence convinced me I wanted to be a mom someday. He fit into our family like a glove and became one of the few people with whom I was free to be myself. His little mop-top of black hair and his infectious laugh continue to steal the show, and our hearts, to this day.
It Could Be Your Most Powerful Tool
When I went away to college I made my first mind-over-matter decision. If I continued being shy and quiet, I would be back home within weeks because of my loneliness, so I decided that was not an option. I had scholarships and big plans. Having emerged from the shadows of my siblings—my unpredictable older sister and my gregarious, sporty younger brother—there was no going back. As my parents pulled away after delivering me to the campus, I reinvented myself and shed my shyness like a second skin.
I acted like the person I’d always wanted to be: outgoing, fun, and unafraid. In the first few days on campus, I walked up to three people and introduced myself; this was something I would never have done before (and I’m glad I did because all three are my soul companions to this day).
When I tell people how shy I still feel inside, especially those I didn’t know until college, their response is always the same: “There’s no way you are shy. You have to be making that up.”
Only my closest friends knew the truth. Every new interaction was painful for me, and I doubted each word that came out of my own mouth. Replaying every conversation, I would second-guess even my body movements. While I wasn’t always received the way I wanted to be, I did learn I was a lot stronger than I had thought. I realized self-perception was the only reality that mattered. I proved to myself that if I set my mind to something I could accomplish it, to the point of creating a whole new version of myself.
The recognition that I can control my thoughts about myself and my circumstances has become a powerful tool in dealing with my disease and with life in general. I share this because I believe it can be a powerful tool for you as well—perhaps the most powerful.
I met and married the love of my life, Scott, after a few false starts and missteps in my early adulthood. Those experiences helped me become who I am and prepared me for the beautiful life I have with him. Despite the youthful emotional pain of those early encounters, I am grateful for them.
Scott