If you told me five years ago that I’d be wearing flat shoes, I would have laughed. The thought of giving up high heels seemed unimaginable. Then again the thought of getting diagnosed with a 1 in 100,000 disease I’d never heard of was also unimaginable. (I already had Bipolar Disorder and Polycystic Ovarian Syndrome. My proverbial plate was full.) This neuromuscular autoimmune disease, Myasthenia Gravis (MG), has rearranged my life. After getting MG, I initially refused to make changes, like giving up heels, because I thought changing meant the disease had won. Over time, I learned the difference between denial and courage.
Becoming A Chair
After getting MG, I had trouble bending down to reach drawers or lifting my arms to reach shelves. Everything suddenly felt too high or too low. For years, (before I took Reliv), I had to sleep at a 90° angle every night because of my compromised lungs. I had to become a human chair just to breathe!
I was caught in an endless cycle: Step 1—prop pillows to support my back. Step 2—fall out of bed. Step 3—put CPAP (sleep apnea) mask back on. Step 4—get back into bed. Wash. Rinse. Repeat. Friends would ask me if I was going to change my furniture. Three years into MG, I kept saying, “It might be a waste of money. I could get better tomorrow, you know. It could happen.” But four years into MG, I realized: There might never be a cure. So I got rid of things like cabinets with drawers. And I bought a bed that allowed me to sleep at a 90° angle. I finally got some rest!
I also gave up high heels. To give you an idea of how difficult that was: For ten years, I wore heels everyday even at home. I actually had stilettos that matched my pajamas that I called my “house high heels.” So what’s the difference between denial and courage?
- Maintaining uncomfortable patterns: Refusing to change my furniture was not being brave; it was being stubborn.
- Keeping painful traditions: Almost all the parts of my body, from my back to my toes and fingers, hurt. But in 2009, a few weeks after getting a thymectomy (my neck was cut open and glued back together after my thymus was removed), I attended a bridal shower in heels. (What was I thinking?) After seeing my heels, the host proclaimed, “She’s back. The real Jessica is back!” That was not helpful. If you know someone ill, instead of focusing on appearance, focus on how he or she is feeling. Oftentimes it helps me when a friend just listens.
- Refusing to accept any changes: I’m not saying that we should give up the hope of ever getting better. I am suggesting that in the meantime we adapt to our current reality. My breathing is better now and I no longer have to act like a chair but having my special bed did make life easier for a season in my life. In the past, I also adapted to depression. In college, I took three classes a quarter (instead of the regular load of four) until I had bipolar disorder under control. I ended up graduating on time with two majors.
- Realizing that you are more than the sum of your abilities, hobbies, and looks: I know now that the real me exists even though I no longer cook gourmet meals or wear high heels. The real me is a person of faith with a will of steel who loves family, friends, and helping people.
- Finding new ways of being: Before MG, I did yoga five days a week. After MG, I could no longer do yoga. So I googled “exercises for sick people” and stumbled upon Pilates. I’ve been doing Mari Winsor DVDs for four years. And I look forward to it everyday. I’ve also discovered that stylish flat shoes and wedges do exist!
- Living at your own pace: Sometimes loved ones can unintentionally pressure us. Once in a while someone will insinuate that MG isn’t that bad because so-and-so’s cousin’s wife’s grandfather lived to be 93 and swam seven laps a day. Good for him! I’ve got my own situation and I have to live life at my pace.
–Your Stylist, Jessica Gimeno