Practical and uplifting insights from patient-expert and author Mims Cushing:
“You might not be able to manage your body the way you like, but you can manage your mind,” counsels Mims Cushing, who has been jotting down coping tips from patients and professionals since chronic nerve pain disrupted her life more than a decade ago. Those handwritten words of wisdom are now available in the new book, You Can Cope with Peripheral Neuropathy: 365 Ways for Living a Better Life (Demos, 2009, $18.95).
“In 1996 my feet were constantly burning and numb,” she tells the Post. “My lifelines to sanity were The Neuropathy Association and Dr. Norman Latov—the neurologist who co-authored the book with me.”
Cushing recently spoke at the annual meeting of the Neuropathy Action Foundation where she addressed the top ways to cope with neuropathy.
The Top Ten
When neuropathy gives you fits and you’ve done your best to seek medical advice:
1: Be excited about the buzz regarding neuropathy. People don’t say, “Never heard of it” as much as they used to. There’s a sea change out there that is making it easier for 20 million people to deal with, track, and understand their condition.
Today, The Neuropathy Association (neuropathy.org) can provide the name of a specialist near you. You can receive newsletters by mail and sign up with Google Alerts for updates. Experts recognize different types of the disease and dozens of reasons for having it.
2: Be grateful. It’s hard to be stressed when you are thankful and appreciative. Stress surely makes your neuropathy worse. To be less frazzled, keep a gratitude journal. (It doesn’t have to be a Pulitzer Prize winner.) At bedtime, think about what you’re grateful for—don’t groan about what you did wrong during the day or make to-do lists. Saying “I’m so grateful,” puts a different, healing spin on your feelings.
3: Be open to everything that might help you. Which technique seems out of place: acupuncture, meditation, tai chi, or drumming? Did you say drumming? Well, all of these methods (and others) are used for healing. I beat African drums at a senior center. Maintaining a powerful, constant rhythm is meditative. People in the class say their blood pressure and pulse rates go down. And on Tuesdays when I drum, my feet hurt less.
Dr. Jerome Groopman, renowned writer and physician, suffered an accident and was in pain for 19 years. Finally, he listened to a doctor’s advice to not give in to the god of pain. After one year of initially difficult exercise, he was pain free. I recommend Dr. Groopman’s books, including The Anatomy of Hope.
Consider new ideas you may have dismissed. And when you think about things you can’t do, remember that you now have the time to do things you may not have had time to do before your neuropathy: cook special recipes, research your genealogy, study a compelling topic, write in a journal, or create an indoor container garden.
And P.S.: Perhaps you must do some things differently, such as using a walker at the mall. But you can still do them.
4: Banish toxic people. You can wail about the curmudgeons in your life, slap ’em upside the head (which I don’t recommend), or ease yourself away—the best way to deal with them. Troublesome friends or relatives can make you sad or cause you angst, both of which make our illness worse. When my friend Madelyn heard someone was driving me nuts, she said, “Don’t let her rent space in your head!” Optimistic friends can help our spirit. Author Wayne Dyer says, “Your friends are God’s way of apologizing for your relatives.” Writer Judith Orloff calls the mean people in our lives “Energy Vampires.” Maybe you must be around difficult relatives during the holidays. Is it any wonder your neuropathy worsens then?
5: Focus on something greater than yourself—volunteer. I believe people quit volunteer jobs because they haven’t found the right one. A pianist in Ponte Vedra Beach, Florida, volunteered at a local hospital and was asked to change the sheets in the Emergency Room. After a few weeks, he asked if he could go to patients’ rooms and play music on a portable piano. He found the perfect job for him.
Sometimes volunteering means listening. It’s powerful to say: “You talk. I will listen.” A man I know got some bad news from a doctor. As he was leaving, the doctor put his hand on my friend’s shoulder. And my friend suddenly felt better. The church handout, Our Daily Bread, says, “When we forget about ourselves, we do things others will remember.” And, I add, we think less about our pain.
6: Love your cabbages and caviar equally. Consider chores to be as meaningful as creative hobbies and other diversions. Next time you are ironing or emptying the dishwasher, realize that it’s of value. Don’t rush around.
7: Let the good stuff in. Floridian Eugene Richardson, a retired Lt. Colonel and brilliant man who has had neuropathy for 41 years, watches for life’s little miracles (they are all around), and not for things to worry about. Do you have UFOs, Uninvited Foolish Observations, flying around in your head? Take a break from all the craziness in the world. When you have a crummy day, write about it or have a first-class pity party. Restrict the party to seven minutes, and do it when you are alone. You will carry on longer if you have an audience. Yes, your family may need to help you in a myriad of ways, but don’t dump your complaints on them. The less you fuss, the more they’ll want to help you.
8: Be kind to your body. This does not mean eating ice cream smothered with Chicken Alfredo. But you can hurt your neuropathy by jumping on hard surfaces, or doing certain kinds of Pilates, says Dr. Alan Berger, head of neurology at Shands, Jacksonville. I’ve figured out two perfect places where we can exercise without gravity being an issue: a swimming pool and a space shuttle. I’m buying a space shuttle. They cost around $50 billion, so I may have to get it on eBay.
Keep hunting for the exercise that’s right for you. Many fitness centers offer chair-based programs, even for yoga. Just as we can choose to not read a book we aren’t enjoying, or walk out of a movie, we can decide to change exercises.
9: Enjoy your own company. Now, a great spouse is a wonderful thing. So is a true friend, someone who will listen when you call at 3 a.m. But nurturing solitude is important, too. Find your own private place of peace: a park, a beach, the mountains, or the sea. Drive there or maybe just visit it in your dreams. Find stillness in solitude, and solitude will bring you peace.
Friends are not always available. YOU, on the other hand, are always available. Don’t beat yourself up because you have neuropathy. Treat yourself like gold. If you do that, you’ll treat others like gold, too.
One of my favorite sayings from writer Mary Gordon is, “I never feel so accompanied as when I am on my own. And I have figured it out. It is because God is beside me.” Another quote I love is, “You cannot see yourself in a rushing brook, only in a pond of still water” (Zen).
10: Embrace things that can embrace you back. Money can’t. A house can’t. Nor can a car or jewels. Friends and family can embrace you, and a dog can embrace you with a wagging tail. A cat’s purr is an embrace. Laugh along with what you embrace. Remember Norman Cousins’ book, Anatomy of an Illness, about the importance of belly laughs? Still a great read. Grandchildren can make you laugh, too. One grandchild said, “Grandma, your skin doesn’t fit your face.” Another commented, “Gram, you have curly skin.” If you don’t have a source for jokes, have someone send you a bunch from the Internet.Editor’s Note: You Can Cope with Peripheral Neuropathy: 365 Ways for Living a Better Life is available wherever books are sold. Cushing’s 2002 book, If You’re Having a Crummy Day, Brush Off the Crumbs!—a compilation of funny and thought-provoking essays including tips for coping with neuropathy—is available at mimscushing.com.