West Nile Story: 400 Days In Hospital, A New View Of Health Care (And Life)

By Dr. Annie Brewster
Guest contributor

In August of 2012, Charlie Atkinson was bitten by a mosquito in the garden outside his home in Cambridge, Mass.

Charlie Atkinson, 78, at home, is still recovering from West Nile Virus. (Courtesy)

Charlie Atkinson, 78, at home, is still recovering from West Nile Virus. (Courtesy)

From that bite, against the odds, he contracted West Nile Virus. It nearly killed him.

Charlie was in a coma for more than a week, paralyzed in his left arm and right leg. He spent more than 400 days total in two hospitals. He is still recovering.

Before the fateful insect bite, Charlie, married, with four children and nine grandchildren, was incredibly active. He was an avid tennis player, a self-taught pianist, an educator and entrepreneur who started numerous companies. West Nile Virus changed that life.

I met Charlie, now 78, on a snowy December day at his home, now retrofitted with a wheelchair ramp and a stair lift. We spoke in the sunny dining room, which has been transformed into a bedroom, complete with a hospital bed and Charlie’s ventilator equipment (he has a tracheostomy and is on the ventilator at night). Charlie lay propped up on his pillows as we spoke, and his warm handshake and bright eyes made me feel right at home.

A self-described “Just Do It” guy, Charlie fought his way back from near death with amazing determination. He surpassed the predictions of the medical community and has continued to make progress: he can now get around with a roller walker and even take steps on his own with a cane.

But beyond his physical comeback, Charlie’s story is also about learning to be a smarter patient; questioning the conventional medical wisdom and seeking out health care providers who are truly compassionate.

Listen to Charlie here: 

West Nile Virus is an arthropod-borne virus (an arbovirus), most often spread by mosquitoes between the months of June and September. It has been found in 48 states (all but Hawaii and Alaska) and in the District of Columbia. It was first detected in North America in 1999 and has continued to spread since that time. In 2013, the CDC reported 2,374 cases and 114 deaths.

With an incubation period of 2-14 days, only one in five people infected will develop symptoms, most commonly fever, body aches, joint aches and other relatively minor ailments. Less that 1% of infected individuals develop serious and at times fatal neurologic illness, including encephalitis and poliomyelitis, like Charlie. While the odds of serious illness are low, the consequences can be devastating. Without any viable treatment options or a vaccine, prevention is essential.

West Nile isn’t something we typically worry about, but after hearing Charlie’s saga, I know I will be more conscientious about covering up, applying mosquito repellent and staying indoors during peak mosquito hours during the summer months.

More importantly, Charlie’s story has taught me a lot about the power of a positive attitude in healing. In coming to terms with his lasting physical deficits, he also acknowledges that there are some things he now does better than he did before his illness. For instance, in learning to use his hands again, he feels his piano playing has improved. In his words, “I now hit the notes more accurately than before I got sick.”

Charlie would like to express his tremendous gratitude to the medical institutions where he received his care, Massachusetts General Hospital and Spaulding Hospital for Continuing Medical Care in Cambridge. In his words, “They saved my life and made it worth living.”

Dr. Annie Brewster, author and audio producer, is a Boston internist and founder of Health Story Collaborative, a non-profit organization dedicated to harnessing the healing power of stories. You can hear and read more of her stories here, here and here, as part of our Listening To Patients series.

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  • sandy

    my partner also contracted west nile, via a mosquito bite. he is 72 and still in icu, today is day 12. he is intubated and scheduled for a tracheostomy tomorrow. he is responding to commands and answers (by shaking head) questions. your story was inspiring and helpful. I feel so perplexed and hearing your perspective from the “inside” was quite encouraging. he is a feisty guy, thank you for sharing Charlie. thank you especially for sharing the part about the vent being “dialysis” for the lungs. this makes such good sense. god bless you as you continue to love your family and play the piano. sandy

  • http://www.back2cloud.com/ MD.Asifur Rahman

    I definitely think now is the time for health care reform.
    The health care topic is really heating up lately…lots of people needing it.

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  • Henry Mancia

    I’m proud of my mother Sandra for being a hard worker and always caring for her patients to her utmost ability. This is a great story on your part Mr. Atkinson. IF you happen to read this you may know my name to be Henry Mancia. I’m sure you will know who i am. Take care :)

  • stacey

    What a beautiful story of perseverance and ownership of one’s health. Thank you Dr. Brewster for bringing us these inspiring stories.

  • Katie Rimer

    This is a difficult but wonderful story. As a hospital chaplain I try to remind patients what Charlie figured out: “You’re the patient: these people work for you!” It is so hard to feel “in charge” when one is sick and at the mercy of medical specialists. I appreciate Charlie’s reflections about those clinicians to cared for him a little more tenderly, or listened to him a little more deeply, and how helpful those individuals were. Finally, Charlie demonstrated that who you are before you get sick influences how you navigate illness, and Charlie clearly had a deep well of internal resources to draw upon. Thank you, Dr. Brewster, for sharing this story, and thank you, Charlie, for your wisdom. You are both Teachers.

  • Marissa Osterman

    I am proud to to say that I am one of Charlie’s physical therapists and have been working with him for a few months now. I have had the pleasure to see Charlie’s functional improvements and am so happy for his success! He is a very strong man, both mentally and physically! Joint Ventures Physical Therapy is happy that Charlie stepped foot in our door, as he is an inspiration to all of us.

    Marissa Osterman, PT, DPT

  • Jeannette Atkinson

    Dr. Annie Brewster was, herself, part of Charlie’s story. She entered the picture only recently, but, through her interest, questions, curiosity, and caring was a big part of his recovery. Go, Annie! Go, Charlie! His tracheostomy valve is going to be removed next Friday! The next big step. Jeannette (Charlie’s wife)

  • Brenda Retzlaff de Rivera

    I just got out of the hospital in Minneapolis from west Nile encephalitis. I was in a coma for a week, stayed in ICU for a few weeks and eventually got moved to rehab center/nursing home. I was 44 years old and nearly died a few times. I am still not fully recovered but I am slowly getting better. I lost much of the hearing in y left ear and about 60 of my vision- I still get confused and forget things and words- and still down 10 pounds, which was muscle. Charlie, if you read this- I hope you get better. Eat! Eat lots of good food- exercise, even just tension bands or whatever you can do.
    I was lucky had friends and in family from all over that prayed, visited and brought me food I was craving. They saved my life! To everyone- WEAR INSECT REPELLENT!
    Good luck Charlie!

  • tonnole

    Another wonder additional to the U.S. brought over courtesy of immigration. Maybe we can rebuild our malaria and yellow fever mosquito population up next.

    • Brenda Retzlaff de Rivera

      So not true! and just remember your ancestors were immigrants at some point.

  • Wick Sloane

    Dr. Brewster —

    I always think that nothing could be better than your most recent story here. Then, the next one comes along. This is excellent and inspiring. 444 days in the hospital is a challenge for anyone. I do empathize with doctors who have so much technical/medical information to manage in a complex case. This story is a reminder that the caring and love from the rest of us for the patient do matter. And a reminder that perhaps to help the doctors, we, too, have to work hard on the medical dimensions of the situation.

    Thank you and also my thanks to you, Mr. Atkinson, for your honest and courage in just telling us your story.

    Wick Sloane

  • sophie

    Thanks for sharing this story. My mother, now 63, has a very similar one. I thought it was particularly important to add to this discussion that transplant patients are particularly at risk given their reduced immune function. My mother is a kidney transplant patient and contracted west nile in 2011 (she was an avid gardener). She was inpatient for many months after developing west nile encephalitis and in a wheelchair for two years. She is now walking! I hope that doctors continue to emphasize the importance of this to transplant patients and others at greater risk.