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 is patient, kind, and giving. He may get annoyed with my physical limitations, but he has never—not once in our marriage—let it show. Dermatomyositis taught me how to slow down and enjoy the important, tender things in life; my marriage is definitely part of that gift.
At some point along the way I embarked on a spiritual quest. I’d been raised to go to church but had never been satisfied with it. As a young child I questioned things I felt were inconsistent. When I first read Neale’s Conversations with God and heard its nonjudgmental messages of oneness and love, I knew it was exactly what I’d believed all along but had been afraid to say. I embraced my inner knowing and haven’t looked back since.
Stand Ready to Make Daring Decisions
After graduating from law school and passing the bar exam, I made a daring decision. With an enormous amount of debt and three-and-a-half years of school behind me, I decided that being a lawyer didn’t suit me after all. Too bad I couldn’t figure that out without all the schooling and the debt, but I am stubborn—just ask Dad. I had to see it all, digest it, and learn it for myself.
It was not an easy decision to make. Remember that supportive husband I was talking about earlier? You should have seen his face when I said, “Um, Honey, I’m not sure being a lawyer is really for me.” But as we examined it together, my decision made sense for us. First, we looked at my day-to-day health. I’d finally been diagnosed while in law school, and I was getting worse, so our thoughts had to change on some things.
Chronic migraines, all-over pain, vibrational feelings from fibromyalgia, down days due to dermatomyositis (any one of which can put me in bed for days on end), and my previous job history—it all added up to the inevitable conclusion that I’d have trouble holding down a job. Stress and fatigue play a major role in autoimmune disease, and I’d be hard-pressed to find a position with a legal firm that was limited to forty hours a week, if I could even put in that much time.
Then there was the fact that Scott is also an attorney who works many overtime hours—and we were having a child. We didn’t want a nanny to raise her, so it wasn’t feasible for both of us to work full-time—especially if it was going to be detrimental to my health. Nagging at the back of my mind, whether I admitted it or not, was also the question of how many years I had left. After all, I have a chronic, degenerative, and possibly fatal disease. Would working hasten that? Would it make me miss more of my daughter’s life?
If that wasn’t enough, my ideas about the world had changed over the years at law school, and I realized if I was going to practice full-time, I would prefer it to be with a human rights, nonprofit organization. This might have to be in another city or another country, and would likely not pay enough for day care, much less help with the student loan payments.
The best solution appeared to be to start a solo practice doing wills from home and seeing how that would go. We tried that for a while, but though I did a good job on the work I took in, my heart wasn’t in it. My health interfered even with the few legal engagements I had outside the house. I was also required to take continuing legal education (CLE) courses, and the extra load inevitably led to extreme fatigue and migraines.
After just a few years I decided to let my law license lapse rather than continuing to waste money and time keeping it active for pride’s sake. The relief was immense. It was one of those moments in which I got to decide the course of my life, instead of allowing past decisions to dictate my current happiness.
