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.
Without the stress of having to complete the CLEs and paying for my license, and with no more guilt about not actively looking for clients, I was breathing easier. And, just like the skin of shyness, I shed my life as a lawyer.
Today I serve on the board of directors of The Myositis Support and Understanding Association (MSU), write my With My Child series of children’s books, blog on health and parenting, write articles and essays for nontraditional spirituality publications, and I coauthored the book Conversations with God for Parents with Neale Donald Walsch and Laurie Lankins Farley. It is much easier to deal with my disease when I can work at my own pace and on my own schedule. I can sleep or take breaks to get refreshed and recharged as needed.
A Great Secret: Accept Changes Happily
Changes come in all shapes and sizes. What kind of changes have you had to make in order to accommodate your limitations? Many people continue to work but find less strenuous and stressful jobs. Thankfully, those who are unable to work at all are often able to utilize governmental assistance for income.
I am fortunate to be able to stay home and my husband has been able to support us along with what little supplementary income I provide. We have made sacrifices and have our share of financial stresses—student loans and medical bills don’t pay themselves. I haven’t always been a financial help, and often I’ve been more of a drain on our finances. However, I make my contribution to our family in other ways.
My most important contribution is that I homeschool our daughter. There are myriad reasons why I do so, including the quality of her education, our knowledge about how she learns best, our wish to be the strongest influence in her life for a while longer, and our desire to help her become a creative thinker. We also have to consider that it shields me from the germs she would bring home from school if she were there on a daily basis. I’ve been on immunosuppressant drugs the majority of the last twenty years, and, ironically, these drugs make you more susceptible to germs. I joke that a fly can sneeze a few rooms away and I will get a cold—an exaggeration, but it illustrates how vulnerable, in fact, I am.
Learn to Be Cautious
Prior to play dates, birthday parties, and dinners, my friends must get frustrated with my calls asking if anyone is sick. They may think I’m paranoid. Nevertheless, the level of caution I’ve adopted is necessary to protect myself. It’s hard to cancel plans at the last minute because someone in the other family is sick, but the repercussions of not canceling are harder on my family than most people can even imagine. I can only hope for people’s understanding.
Not only am I more susceptible to germs, but I’ve learned the cold it takes the average person a short time to get over can be a big deal for me. I can’t count the number of times I’ve seen my husband, nephew, or daughter sniffle for two days, only to find myself in bed for two weeks with a full-blown flare-up of my disease.
We are cautious when going out in public during cold and flu season. Hand sanitizer is never far from my reach. Minimizing my exposure by minimizing my daughter’s exposure through homeschooling her has helped enormously. But there are other, positive, reasons as well why homeschooling has become one of the greatest joys in my life. I get to watch my daughter learn, witness her brain developing, and see new things swirl around and finally click when she gets them.
This is one of the gifts of autoimmunity. I would not have considered homeschooling had I been healthy and ready to take on the legal world. I would have sent my child off to school without thinking of germs, without stopping to make a conscious choice about what might work better for our family, and without considering being a stay-at-home mom in the long-term. I would have remained on a traditional career path and tried to balance it all, in the end missing precious time with my sweet baby. For all of the wonderful moments with my lovely daughter—my little miracle—I say, “Thank you, Dermatomyositis!”
Creative Tips for Empowering Yourself
• Listen to life as it occurs; learn to resonate with your true needs. Starting with small circumstances, begin really listening to your heart and intuition. You can start by asking yourself a simple question: “Does this situation feel right, or am I doing it because of what others expect of me?” Making conscious choices gives you back a sense of power and control when you feel you lack the same over your body. You know what is best for your health if you will just take the time to listen. As you get more practiced at the little daily tasks, you can examine your bigger life decisions. Sometimes our planned course of action is not what works best for us.
• Give yourself permission and take the time to enjoy the view along the way.
• Get out your journal and think back to a time when you exhibited more inner strength than you knew you had. Remember where you found