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 it and how it felt to use it. Write it down. Describe how your true self is showing up for you. Whenever you are feeling weak or defeated, reread this entry and remind yourself of who you really are inside. Add other great strength moments to the list as they arise, and you’ll maintain a living document that allows you to see how amazing you are.
• Repeat after me: “I can take control of my own destiny.”
Caregiver Tips
• Know that your loved one may have to make decisions that might seem “outside the plan” at first, but those decisions will greatly enhance health, and, therefore, daily life.
• Be prepared for a loss of income. Spending adjustments will need to be made in order to support the necessary health-related decisions.
• Assure your loved one that he or she need not feel guilty about any of this, and allow yourself to know that dealing with chronic disease is difficult enough, without feeling terrible about the effects it is having on your family.
• Understand that just as your loved one’s life and physical reality has changed with autoimmunity, your life will change as well.
• Be patient with your loved one; he or she is more frustrated with the changes than you are. With the loss of independence, dignity suffers.
• You may be asked to take on more housework and more physical and emotional responsibility in your relationship. Are you ready and willing to do so? Just as your loved one might wish to seek professional support in dealing with the changes, it could be beneficial for you as well.
• You may offer support through back rubs and foot and arm massage, which can be extremely comforting to your loved one.
Create Your Own Marvelous Transformation
Grab your journal and spend a few minutes contemplating what you just read. Use the following questions to guide you.
1. What situation or example resonated most with you in this chapter?
2. When faced with a similar situation, how do you feel, act, or think?
3. What would you most like to remember from this chapter?
Now we’re going to take this to the next level. You are going to make your own mind-over-matter decision, right here, right now. Follow these steps, and don’t skip any of the hard parts. The more thought, time, care, and attention you invest, the greater your rewards will be.
1. Set aside an hour of uninterrupted time, where you can focus on yourself and don’t need to worry about any family, social, or work obligations. If you can do that right now, wonderful; if not, go ahead and mark a date
