What was your reaction when first diagnosed with MS?
I didn’t worry for myself because I was concerned for my father who had recently had a heart attack and angioplasty. I reassured him that I was okay, and I believed that to be true in spite of an arm that didn’t work, a body half numb, and my doctor saying there really was no treatment for MS.
Previous to my sickness, I had planned to have a Course in Miracles class held in my home. Still, I made sure it happened, and it was a gift to have a group of people come to study in my living room with a teacher telling us the first lesson was to acknowledge, “I am not my body.” In the weeks that followed I essentially had a healing circle in my home, so again my thoughts weren’t of me but of all who were present, as the course led us to healing and enlivening of our spirits.
What life changes did you make once you fully realized how MS could disrupt your life?
Fortunately, a business associate connected me with two men who had MS for over ten years. They gave me advice on supplements and diet and reassured me that life would continue however I wanted it to. One of these men travelled across the country showing his cattle and the other swore by the importance of daily swims in the ocean.
In the months that followed, as my body regained most of its former abilities, I felt a calling to move to the Bay Area where there were many choices in alternative healing. The two men, who I never met but spoke with frequently in the beginning, encouraged me, by their lives living with the disease.
I learned more about MS during the weeks when I was bedridden or housebound, by reading and reviewing my personal history. Mainly, I came to the conclusion that stressful work could not be part of my future, nor could stressful relationships.
What is the single most important thing that readers of your book will be able to do after reading it that they couldn’t do before?
Follow their dreams. Go outside and discover nature. Find their passions to express themselves, without self-criticism.
You went to high school on a working cattle ranch. What was that like and in what ways did it help form you?
It certainly gave me opportunities quite different from the typical teenager in the 60’s. We didn’t have television or movies and rarely dances, but instead 4-H and Caravan. The latter was an annual trip with students piled on top of duffels and sleeping bags in the back of cattle trucks. Thus we traveled for a week, maybe to Mexico, maybe to the Painted Desert with stops at Indian ruins along the way. These experiences sparked my future interest in traveling to fascinating locations.
The most unusual aspect of attending high school on a ranch was not getting demerits when disobedient but a sentence of hours, maybe 20 maybe 100 that had to be worked off. For me the least pleasant would be washing windows or collecting eggs from the chicken coop. Joining the cowboys on a round up was harder, but my favorite.
In some ways I’ve come full circle, since I now live on a ranch. We don’t have cattle, but there’s plenty of land and the feeling of freedom I had in high school, which I feel so fortunate to have had. Settling in the Santa Ynez Valley was a good choice for me. I now lead a quiet, stress-free life.
What emotions does your book evoke in readers?
Courage and hope come immediately to mind. In the early phase I stayed in bed or in a room, uncertain how to face the world, doubting that I could. Courage and hope returned when I exposed myself to ordinary life, when I tried just the smallest new venture like walking in the park. It gave me courage to try bigger ventures, like moving to a new community.
Now that you’ve lived with MS for 25 years, are there any suggestions you wish you had listened to in the beginning?
That everything would work out. I let fear take over, a quiet unseen fear that caused me to make some stupid choices, primarily to marry someone who could be there to wheel me in a chair when I got older. We’ve since separated.
How does MS still affect you?
Fatigue and heat sensitivity, both of which I can monitor if not control, so I pace myself and plan to avoid the hotter times of day and activities that might tire me. I still don’t know if I’ll have an attack, but I am relatively confident in the drugs that the pharmaceutical industry has provided. I am fortunate to be much less affected by the disease now than in the beginning years, and I believe this is because of my life choices and my doctors.
What does an attack or relapse look like with MS?
An attack in multiple sclerosis might be a return of previous symptoms or an exacerbation, defined by neurologists as a new symptom. Both last, for recurring/remitting patients, between 24 hours and several weeks. New symptoms refer to new plaque, or new damage to the myelin shield that covers nerve fibers in the brain and spine. An attack might result in numbness or weakness in one or more limbs.
Usually symptoms vary, from attack to attack and from patient to patient. I have had most at one time or another. Lack of coordination and memory loss are mostly continuous but other more grave ones disappeared. Relapsing-remitting often develops into progressive MS in which patients don’t get relief, just a continuous worsening disability.
In my relapsing-remitting disease, over the years attacks have become much less severe and more infrequent, partially I believe because I live a calmer life and I’ve found the right drug. Many drugs now exist for the disease, and each has different side effects, varying between patients.
What is the single most important thing that readers of your book will be able to do after reading your book that they could not do before?
Perhaps our readers will start to ask questions about what it means to “be in a body.” Tune in to physical sensations. Examine how different places make them feel. Understanding what environments and activities bring relaxation, as well as rejuvenation, will open their eyes and imagination.
What are you still determined to learn to do?
To learn to hike without fear: to move with confidence in my body. Resist self-criticism, when the better action is to express myself more clearly. There are so many creative pursuits, from gardening to cooking, that require patience and attentive observation, and choices. I hope to continually test the moment of failure and to respond with hope and awareness.
Describe one recurring dream you have.
Rather than a recurring dream, I often encounter snakes and find myself flying in my dreams. During my illness, my dreams were so often about bodily functions. I gained tremendous insight into my weaknesses, from inadequate nutrition to a hunched spine. I needed to strengthen my foundation. I also confronted a darkness, a fear of harming myself, that was haunting my consciousness. Animal visitors were so common that I began to read about my nightly visitors and explored the teachings of animal guides. I encourage others to keep a dream journal and explore the symbols and significance of their night visions.
There’s a lot of controversy about Lyme disease. When were you diagnosed and how? Did you see a specialist?
Both the diagnosis and treatment of this condition continues to change. I developed the bulls-eye rash at the bite site and received a 5-day course of antibiotics. We know now this approach is not adequate. Years later, a doctor who specialized in environmental medicine would confirm my diagnosis. Under his care, I began a seven-month antibiotic treatment.
What alternative therapies have you tried that worked for you?
Chinese herbs and supplements helped me improve function. Many vital nutrient levels, including iron, were very depleted. I was also in the swing of hormonal imbalance, which was addressed through these methods. I found chiropractic care and massage brought pain relief, and acceptance of a body that was in pain and needed gentle care. Chelation therapy was another therapeutic method I chose. Reducing the toxic load in our bodies enhances the performance of our immune system and was highly recommend by my doctor. During this time, I was always cold and carried a great deal of muscle tension. A daily sauna session was pure heaven and brought the benefit of detoxification. As my western and eastern doctors and I proceeded, my sleep and appetite improved. I explored juice cleanses and found a “seasonal” cleanse was easily integrated into my routine. I remember during a 21-day cleanse I realized how delicious a glass of water can taste! So good habits were restored. I am still taking a wide range of supplements based on previous tests. My daily walks began to lift the heaviness of depression and anxiety…and are still so central to my well-being.
What lifestyle changes have you made?
I take more time to assess myself each day and let this information determine what I will do. I still keep my schedule fairly flexible. I have tried to fill each day with exercise, writing and outreach. In other words, I try to return to certain practices every day so I stay in touch with my own progress and challenges. For a while, I was spinning out of control, so I work each day not to overlook, not to be blind-sighted. I observe this in my interactions with others and strive to be clear in my communication and intention. The biggest lifestyle change has been to let people back into my life. I won’t let myself shut the door again.
What cautions you would give others to prevent a tick bite?
It is my understanding that we most often encounter ticks at ground level, so wearing tall socks and repellent around ankles and legs is helpful. It was not until this past summer that I actually saw a tick on another person. They have eight legs and resemble spiders with very fat abdomens. It takes them several hours to settle in and latch onto our skin, so careful examination of our bodies after being outdoors can help us find them before they bite.
Do you have any advice for successful medical care?
During my recovery, I spent a lot of money. I think better tracking of progress and periodic reevaluation would have served me well. Now, I am much more willing to set realistic expectations with my practitioners and to move on when goals are not reached. In my case, it took the point of view of a close friend to help me gain this perspective. Bringing a family member or friend with you to your consultations is always a good idea. Keep a journal of symptoms to allow you to communicate your experience. Record when you begin new medications or treatments and chart changes.