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Tuesday, March 20, 2012

Two More Authors with Stories of Multiple Sclerosis in Their Lives

By Tracy A. Todd

Tracy writes her story as Tesh, beginning at the tender age of ten, attending a parochial school a city bus ride away from her home. As an academically talented sixth grader,  Tesh unexpectedly experiences an episode of what is thought to be epilepsy. Half of her body is numb, and she has fainted in the classroom, causing quite a stir and resulting in an ambulance ride to the local hospital. In the days long before MRIs were available, the best medical assessment could be obtained with CT scans.

Tesh returns to school after a few days of tests and consults, with the diagnosis of epilepsy and a prescription of Dilantin, a medication she is all too familiar with, as her mother cares for disabled adults and administers their medications to them each evening, sometimes with Tesh's assistance. Tesh is then determined to learn all she can about epilepsy, and in the days before internet searches, her thirst for knowledge takes her to the public library. Equipped with the knowledge found in encyclopediae and medical books, she formulates some questions for her next doctor appointment. And while her aunt is impressed with her independent search for knowledge, her mother is scandalized to think that a ten year old would pose questions of her doctor!

Years pass, Tesh marries her high school sweetheart after college, and they begin a family. More symptoms arise, more tests are done, and Tesh is left in the land of the unnamed disease. She moves her research toward multiple sclerosis and demyelination, as she has been made aware of these potential labels after having early MRIs, at first in a cold mobile trailer attached to the hospital. After several years new and disabling symptoms and more tests, she is finally diagnosed with multiple sclerosis. Her husband then becomes her caregiver, and despite his own needlephobia takes on the role of injecting his wife. He, and their two young children, learn with Tesh about multiple sclerosis.

But this story is more than a chronicle of diagnosis and treatments. This is a story of family and love. In it, Tracy Todd tells of the strengths needed and developed, and of the resources sought and found. When she finds a neurologist who specializes in patients of African American descent who have multiple sclerosis, she realizes that she is finally in the right place, medically. And when she and her family find a support group of others with multiple sclerosis, they realize they have found an extended family.

Faith in God the Father is a strong thread in this family's story. Tesh often stops in the midst of despair and confusion to pray, and ask for guidance. She also prays to ask the question all people who live with multiple sclerosis ask: Why has this happened to us? Why has it happened to our families? She listens carefully for answers, and watches attentively for signs. And she learns that patience and trust must go hand in hand with faith.

by Carmen Ambrosio

I have read a lot of books about the diagnosis and treatment of multiple sclerosis, but Carmen Ambrosia goes far beyond that scope. Her book, Life Continues, tells the story of life: life with family, life as an independent woman, life as a wife and step-mother, and life with friends and co-workers. Life with multiple sclerosis is a part of her story, but it is not her defining role.

Carmen grew up in the Virgin Islands, but moved to the northern United States to attend college. Statistics say that moving to a northern latitude before the age of 16 can increase an individual's possibility of developing MS. Whether that is due to the sudden lessening of natural vitamin D via sunlight, or due to other environmental toxins, is not yet known, and is not addressed in her story. Why she developed MS is not a question she spends a lot of time asking; how to go on and live her life as best she can is more her focus.

Ambrosio's book includes moment of humor and moments of pathos; her father's death of cancer is a sobering moment in her life. She had a wonderful relationship with him, and treasures what she learned from him. Her independence and self sufficiency are traits that she attributes to that relationship. She also had a warm and valued kinship with her grandmother, who lived her life in the Islands simply, making herbal remedies for her fellow islanders and sharing generously her wisdom, faith and food. What Carmen brought forth from this relationship is her own sense of generosity and the ability to self-sustain with the help of those who love and care for her.

Carmen views doctors as people who are capable of helping and capable of making mistakes. She does not remain in a doctor's negative or callous presence, but moves on as quickly as needed to find a better doctor. Her description of the right doctor is one who listens and responds to the person seeking help, and she has found two such doctors in her new home state of Ohio.

Carmen Ambrosio's sense of humor shines through in her story; her understanding of "bod-mail" identifies her own knowledge of how important listening for messages from her body. She describes a morning ritual similar to a roll call, checking in with each portion of her body to assess the day's potential and needs. She has learned the hard way that ignoring messages of early discomfort or building weakness can cause much greater difficulty later. Her methodology of printing these bod-mails as inbox messages and her own responses drives this important message home without resorting to a preaching style.

Life Continues is an informative, entertaining and comforting read for people trying to find themselves in the person suddenly diagnosed and labeled with the term multiple sclerosis. It certainly can stay on a bedside table and be picked up for those few moments of clear eyesight and the need for a quick uplifting read. It's a valued book in my collection!

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