a rope bridge over a chasm with one person in the middle of the bridge 

Image by anja_schindler 

Multiple sclerosis (MS) has added a bizarre twist to my quest to find fulfillment and to serve others. At times, it has helped me understand my purpose with greater clarity even while sometimes thwarting my plans. My focus has changed over time, adjusting itself to my whims, health limitations, and my family’s interests and needs. I am thankful for each formation it has taken: the clinic, my patients, the marathon, my kids, this book.

Don is nostalgic for the days when Ella and Clara hugged him without prompting and snuggled with him before bed. I am not. Well, mostly not. Perhaps because my MS—with chronic dizziness and insomnia—plagued me for several years nearly every day, I don’t remember with fondness those years of parenting young children.

I am grateful now that Ella prepares her own breakfast and lunch, drives herself to school, does her homework without prompting. But I am especially grateful for her generous spirit, friendly personality, remarkable sense of humor, her love of music and travel, her curiosity about the world. Despite my enormous inadequacies as her mother, she is okay—more than okay.

Clara doesn’t wake us up in the middle of the night anymore. She is thoughtful, fiercely independent, and well loved by anyone who knows her. She is an excellent swimmer and gifted artist and photographer. She loves to play classic rock on Don’s old electric guitar. Don and I no longer feel like we are in Dr. Seuss’s Waiting Place. We are able to celebrate the place where we are now.

Acceptance, Resentment, Encouragement

I don’t exactly accept my MS. I still resent it. But I'm encouraged by the rapid advances in MS research and care that have led to new treatment approaches and a better understanding of the disease. And I have found ways to cope. Diet changes didn’t help but stopping caffeine did. Continued meditation and mindfulness have helped reduce my anxiety about the future.

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Eternally frustrated with the health care system, as both a doctor and a patient, I left clinical practice to work for several years on programs to improve and transform the way health care is delivered at a population level. Although I missed my patients, I found a better balance for myself and my family. I have far more normal than dizzy days now.

When, in late 2016, I had another flare, I switched medicines again and finished a draft of this book. I reminded myself, this is the way it is right now. I’ve had no detectable disease progression since. And another career shift, to include some direct patient care, is on the horizon.

MS is an excuse to sleep eight hours, even when I have too much to do. I prioritize self-care and remain vigilant about daily exercise. And MS has helped me confront mortality and form a tense alliance with uncertainty.

Connection and Community

I have also connected with the MS community by participating in the National MS Society’s Texas MS150 every spring—a two-day bike ride, over 150 miles, which brings people together to raise awareness and funds to fight MS.

On the other hand, my concern about the U.S. health care system—exacerbated by the COVID pandemic—continues unabated. Millions remain uninsured, and the situation in Texas is worse than any other state. I read their stories in news reports, and I see the impact during my regular volunteer sessions at a clinic for people experiencing homelessness.

A report published in January 2023 by the Commonwealth Fund, comparing the United States to other high-income countries, shows that people in the United States face the worst health outcomes—with the lowest life expectancy and the highest death rates for treatable or preventable conditions. Despite spending the most per capita and as a percent of gross domestic product, the United States is the only nation that does not guarantee universal health coverage.

Fortunately, I’ve discovered ways through my work and out-of-work activities to think creatively about system improvements, designing programs to support vulnerable populations and, most recently, joining a multidisciplinary team to improve care for people with multiple sclerosis in Central Texas. I also tackle big-picture issues, like climate change and pollution, in my work with Texas Physicians for Social Responsibility. My life is still as packed as an overstuffed suitcase, and I’m trying to make peace with that.

Life is like a coral reef, crafted from millions of moments instead of calcium deposits. It’s haphazard and unpredictable, but that fragility contributes to its beauty. I am more aware of each moment now. MS has helped me appreciate them all.

Copyright 2023. All Rights Reserved.
Adapted with permission of the author.

Article Source:

BOOK: Up the Down Escalator

Up the Down Escalator: Medicine, Motherhood, and Multiple Sclerosis
by Lisa Doggett.

book cover of Up the Down Escalator by Lisa Doggett.This hopeful and uplifting book will encourage those living with chronic disease, and those supporting them, to power forward with courage and grace. It will spark conversations to redefine perfect parenting and trigger uncomfortable discussions and outrage about the vicious inequalities of health care in the U.S.

Most of all, it will inspire readers to embrace the gifts of an imperfect life and look for silver linings, despite life’s detours that sabotage plans and take them off their expected paths.

For more info and/or to order this book, click here. Also available as an audiobook and a Kindle edition.

About the Author

photo of LISA DOGGETT, MDLISA DOGGETT, a family physician, was diagnosed with multiple sclerosis in 2009. She is passionate about improving care for vulnerable populations and helping people with MS and other chronic conditions live their best lives. Her articles have appeared in the New York Times, the Dallas Morning News, Motherwell, the Austin American-Statesman, and more.

Her new book is Up the Down Escalator: Medicine, Motherhood, and Multiple Sclerosis.  For more info visit Lisa's website at LisaDoggett.com/