In my forty-two year struggle with chronic neuropathy and with the loss of two great careers at the peak of productivity.
The emotional toll on me could not have been greater over the years. Meeting the demands at work, playing with the children and grandchildren, doing simple routine tasks around the house, all became very difficult to impossible. I found myself staring at them as if they were unclimbable mountains.
Instinctively, I knew that all this required creative changes while I stared at routine household chores as if they were major feats, with stairs or an incline becoming the enemy. A simple trip to the store or standing for too long anywhere became major challenges.
The physical and emotional losses in chronic neuropathy can be staggering.
Many of you have been there in this struggle and it is a natural response when we face a loss, to say, “Why me?” It is what we call normal grief work. It is emotional work that must be done by anyone who experiences a loss. However, there comes a time when we must refuse to remain fixed on “why me”, seeing ourselves as helpless victims to those around us.
To patients with a chronic neuropathy it is not new news that neuropathy all too often creates serious disabilities. Life can be turned upside down. We lose the ability to do things we have taken for granted at home or work. These disabilities challenge the very core of our life’s purpose and meaning. In our struggle to gain a new purpose for our lives, we have with this normal “why me” response, another choice in our battle as we search for adjustments to renew our purpose for living.
Leaving the question of “why” behind, you discover what I call the “what” question.
Since I have a chronic neuropathy, “what” can I do, what are my choices? The what question leads to answers, inspires hope, surprising you with the discovery of new purpose, driving our resolve in the face of the darker side of living. Turn the question from a focus on the “why” into a “what” question. Is this always easy? Do I always do this perfectly? Why, of course not.
Yet the answer on how I can turn neuropathy into something that in this instance will help others while helping myself is a journey well worth exploring. How can I build a new purpose out of this seemingly deep black hole of darkness? Most of you have learned by now that an instant miracle cure-all pill does not exist for neuropathy although we are making progress through research and practical ideas from patients. So when you look at the “what” question, instead of the “why” question, where might it send you?
Perhaps you too will discover new worlds which you would have never otherwise known?
Debbie Dawson, a nurse with chronic neuropathy wrote for her support group a practical simple guide to help us work our way through the issues. Dr. Scott Berman, M.D. (Psychiatrist) and CIDP patient quotes Debbie in his book on “Coping with Peripheral Neuropathy, How to Handle Stress, Disability, Anxiety, Fatigue, Depression, Pain and Relationships”. Excellent book. Here is the guide to help you discover the “what” for our lives with chronic neuropathy.
I speak of these in the DVD “Coping with Chronic Neuropathy“, so please request a copy of the DVD. You will be glad you did!
1. “Things I can no longer do. (Examples: (Examples: Power walking, climbing more than three stairs or steep incline, running a race, driving a car without hand controls, lifting heavy items, standing for any long period, climbing a ladder, holding a job, taking a walking tour, or any major chore around the house).
2. “Things I couldn’t do before, but can now. (Examples: Have time to write, spend more time with my family, time to listen to teenage grandchildren, visit family and friends, enjoyable dinners with friends, work with support groups for patients, understand the challenges faced by the handicapped and disabled, and develop a lecture on coping skills for illness).
3. “Things I do the same as before. (Examples: Sitting in the sunroom enjoying the sunsets, watch educational TV shows, write articles, manage investments and home budget, eat, sleep, read, use my computer and use my cell phone, fish off a pier, watch the deer outside my camper, take pictures, enjoy my dog, help other neuropathy patients, support research).
4. “Things I can still do, but differently. (Examples: Go to the mall using an aid, walk dog with scooter, write using a thick pen, go on a ocean cruise with scooter, hunt turkey with help and a blind, go camping with automated equipment, drive but limit driving to not more than four hours, go up a few stairs by pulling with arms on hand rail, stay active).
5. “Things I can do differently, just not ready to yet. (Examples: Ride the scenic train in Canada, have house modified for handicapped access, purchase a vehicle for the handicapped with hand controls).
By using this guide, you will find new meaning and purpose for living and go beyond your limitations to a better world where surprise discoveries, new experiences, new ways of doing things, become the foundation for a new brave world beyond limitations imposed by chronic neuropathy.
RECOMMENDED READING: You Can Cope with Peripheral Neuropathy: 365 Tips for living a better life, by Mims Cushing, available at www.amazon.com or your local book store.
NOTE: Copyright 2010-15 Network For Neuropathy Support, Inc. dba Neuropathy Support Network.. This article may be reprinted or published for educational purposes as long as the printing or publishing is not for profit and acknowledgement is granted the author. Contact him at E-mail: gene@neuropathysupportnetwork.org
PATIENT TO PATIENT – Disclaimer: Patient to Patient articles are intended to be educational, not diagnostic or prescriptive and the patient is encouraged to seek help from their own private physician.
