Author, Artist, Beauty Consultant
New Haven, CT, USA
Industry: Health Care
Field: Neurological Disorders and Epilepsy Advocacy
As the command center of the body, a person’s brain enables them to function on even the most basic level. So when a disorder, such as epilepsy, affects that organ, a person’s life can change forever. Epilepsy is a brain disorder that causes a person to have repeated seizures over time. Although symptoms vary from person to person, these episodes of disturbed brain activity can hold a person back, if they let them. As an individual who has lived with this disorder her entire life, Nancy Carlisle Schumacher has strived to overcome both the disorder and the stigma attached to it over the past 50 years.
Ms. Schumacher was diagnosed with epilepsy in 1940 and based on her experience, has become a mentor to those who encounter the same struggles she did. She has written and published five books on neurological disorders, including “Unraveling the Spider’s Net: A Family’s Struggle with Epilepsy, Parkinson’s Disease, and Depression,” “Epilepsy: A Personal Approach,” and “The Swallow’s Flight: Tales of Persons with Misunderstood Neurological Disorders.” She has also presented 24 medical papers in Europe and China since 1985. Ms. Schumacher earned a master’s degree in psychology in 2009 from the University of Phoenix and is pursuing a Ph.D. in Psychology, with a concentration in health and wellness, from the University of the Rockies. An advocate for social change, she plans to focus her doctoral thesis on uncovering hidden disorders through social change.
A Texas native, Ms. Schumacher lived in many different parts of the United States while her husband served in the Navy, including Hawaii, California, Minnesota, and Connecticut. While spreading awareness of epilepsy and how to deal with it has been her main focus throughout her life, she has also served as an assistant art teacher, art teacher, and accountant. Prior to earning a master’s in psychology, she received a Bachelor of Arts in Education from Texas Woman’s University and a Bachelor of Fine Arts from Southern Connecticut State University. She currently uses her talents as an artist and author to benefit her business, Carlisle’s Classics, and spends her free time selling Mary Kay products. In the future, she plans to continue to write.
Conversation with Nancy Carlisle Schumacher, BA, BS, MA
WORLDWIDE PUBLISHING: On what topic(s) do you consider yourself to be an expert?
Nancy Carlisle Schumacher: I consider myself to be an expert on epilepsy. I am also very involved with cerebral palsy as I have spoken with some of the top minds who have dealt with it and have written two books on this disease.
What characteristics help to separate you from your competitors?
I have firsthand knowledge about the disorder of epilepsy and have had it since 1940. I write from an individual’s viewpoint, not a medical viewpoint. I have lived with the stigma and misunderstanding of this disorder for 72 years.
What motivates you?
I want people to be aware of this disease and as of now there are not enough people willing to do proper statistical studies. Many people don’t want to admit that they have epilepsy because of the stigma attached to it. My granddaughter was born with it, but she outgrew it. Epilepsy was caught earlier and the drug used agreed with her.
What lessons have you learned as a professional in your field for the past 49 years?
You have to roll with the dice and be able to be flexible enough to take whatever comes along. As a person with epilepsy, I’ve learned that you have to stay on top of the drugs that you take and look at your stressors that aggravate the seizures the most and get rid of them.
What short-term and long-term career goals are you currently pursuing?
My goal is to earn a Ph.D. in Psychology, and Health and Wellness by January 2015.
What is the most difficult obstacle or challenge you have faced in pursuit of your goals?
Finding a school that would accept me and allow me to pursue the material one course at a time.
What is the most significant issue facing your profession today?
A lack of understanding and the fact that some doctors are even telling their patients not to say that they have epilepsy because they may be turned down from a job.
What are some questions that an individual interested in your services can ask to ensure a more productive relationship?
If they want to learn about epilepsy, they should first have an open mind and then ask anything they would like. If they are afraid of the disease because they don’t understand it, then they have to ask questions so that they have a better understanding. It does kill people so there is urgency in understanding the disease.
Did you ever consider pursuing a different career path or another profession?
Originally I wanted to be a speech therapist and I wanted to work with people. I took two years at a junior college and then my third year I went to Southwest Texas State Teacher’s College (now Southwest Texas University). I had excellent teachers, but the school did not want to grant me a degree in speech therapy in 1958 because they thought that I would scare the children due to my epilepsy. They wanted me to become a secretary, but I only lasted for six weeks at a business school and then I went back to school for my teaching credentials. However, they thought I was a bad risk because I had epilepsy and a fractured hip. I did receive a degree in 1962.
What made you start to write?
I’ve been writing since high school and when I went to Hawaii, I was still trying to pursue a degree in education. When that didn’t’ work out, I pursued a degree in accounting. At this time, my husband’s friend, who was a publisher for a Submarine-base paper, had me start to write articles. The first book I wrote was “Special Children: A Mother’s Point of View.”
What do you find to be the most rewarding aspect of your profession?
People like my books. I am a source for parents of children with epilepsy — parents then do not feel at a loss when it comes to dealing with their child.
What advice can you offer fellow members or others aspiring to write a book as you did?
Talk to the people who have the disorders and to the clinicians who work with the disorder and get their input. Speak with everyone who has contact with the person who has the disorder and get their input. Everyone has an effect on people. Look at what type of audience you are writing for, and then find a publisher that will work with you.
Do you do any public speaking?
Yes, I speak about epilepsy to teachers and medical students. I educate teachers about using art. I spoke in Ukraine to medical students, and I use similar patterns with epilepsy and CP.
Who have been your mentors or people who have greatly influenced you?
William S. Fields, my neurologist, who wanted me to have a good life. He introduced me to the American Epilepsy Society. Also, William S. Fields, MD, Daniel Halpern, MD, and Ivan Lesny, MD, were mentors to me.
What changes have you observed in your industry/field since you started?
I have finally seen a few changes. Genetic seizures have been diagnosed and recognized in Australia. Neurologists are trying to find the best diagnosis for the seizure that they are treating, but they need to involve the patient more. There are many types of epilepsy and for years they paid more attention to syndromes rather than seizures. The ILAE still doesn’t recognize the type of seizure that I have. It is genetic and involves complex, partial and secondarily generalized tonic-clonic seizures that may look like a Jacksonian seizure.
How do you see these changes affecting the future of your industry?
It should get better as more people who influence and persuade the public make epilepsy and other sudden disorders more commonly understood.