)

Member Stories

Jan Johnson

 

For more than 30 years, Janet Lee Johnson was a professional clown named “Sunrise.” Motivated by the deaths of several family members who were stricken with cancer, especially her own mother, Jan made it Sunrise the Clown’s mission to bring joy into the lives of other people affected by this devastating disease.

 

By any measure, she seemed to succeed in doing just that, receiving numerous awards and commendations over the years that were a testimony to her success. So, it was this total dedication to helping others with a life-threatening illness that made it even more shocking when Jan’s own life was on the line because of a stroke.

 

In the fall of 2003, Jan was very busy living her life’s mission when, at 53 years of age, she suddenly began to experience cardiac symptoms. Her doctor arranged for testing to be done, and on Nov. 16, 2003, she went into Washington Hospital Center, in Washington, DC, for what was supposed to be a simple out-patient heart catheterization. The test revealed that she needed immediate quadruple by-pass surgery, which she had the next day.

While in recovery, Jan wasn’t responding as she should have, so her doctors shocked her heart twice, to try to get it beating again. When she still didn’t regain consciousness, her physician ordered a CAT scan, which revealed that she had suffered a hemorrhagic stroke in her brainstem. The scan also showed numerous small ischemic strokes throughout her brain.

For weeks, Jan was in a coma and on life support. She came out of the coma Christmas week of 2003, to discover that she was totally paralyzed, that she couldn't speak coherently and that she couldn't understand what other people were saying to her.

 

At that point, Jan was so critical that her husband, Wayne, was told that even if she did survive her ordeal, she would be in a vegetative state and have to live in a skilled nursing facility the rest of her life. But, that didn’t happen. Jan not only survived, but on January 9, 2004, she was stable enough to be transferred to a rehabilitation hospital for extensive physical, occupational and speech therapy.

 

She was in rehab for more than 11 weeks, when, on March 27, 2004, she ended up back in intensive care because she had developed an e-coli infection and sepsis. Once out of intensive care, Jan was transferred to a second rehabilitation hospital to resume therapy. She finally went home in April of 2004, but had to continue cardiac rehabilitation on an out-patient basis, three days a week, for three more months.

 

Unfortunately, that wasn’t the last experience that Jan had with stroke. On December 31, 2006, and again, the next day, January 1st, 2007, Jan was at home with her husband, and her best friend, Terrie, when she began to experience numbness in her left hand, slurred speech, and aphasia.

 

After the second “event,” Jan was admitted to the ICU at Anne Arundel Medical Hospital. Subsequent medical tests showed that her symptoms were caused by transient ischemic attacks (TIA’s) caused by blockages in both carotid arteries in her neck.

 

Since Jan’s doctors felt that she was too high-risk to undergo major surgery, they chose to take a “watch and wait” approach. Jan was prescribed Plavix®, and must be seen on a regular basis by her vascular surgeon and cardiologist.

 

Jan didn’t escape all of these experiences unscathed; the strokes and TIA’s have left her with many physical and cognitive problems. The brain stem stroke damaged her ability to see peripherally, so that Jan is completely blind on both sides of her field of vision. Since she can only see things directly in front of her, she can’t drive a car.

 

Jan also lives with considerable pain from neuropathies that developed post-stroke, and from when feeding tubes were inserted for three different surgical procedures. She continues to have residual sensory and motor problems on the right side of her body, and her balance is so poor that she can only take a few steps before she has to sit down.

 

Jan manages all of her post-stroke problems in a variety of ways. Because she can't stand for long periods of time, Jan relies on canes, a walker, wheelchair and scooter to get around. And, since the stroke left her with “foot drop” on the right side, she wears an ankle/foot orthosis on her right foot, as well as special shoes that help her to maintain balance when she’s upright. Jan’s husband, Wayne, has to dress her, so she wears clothes with few, or no, buttons and zippers, and she wears her hair short because it is easier to style.

 

Like many stroke survivors, Jan also struggles with on-going cognitive problems. She finds it difficult to concentrate and her words occasionally come out “backwards.” To manage aphasia, Jan has learned to avoid being overly stressed, pressured or tired, all of which cause the aphasia to get worse.

 

And, in order for Jan to understand what someone is saying when they talk to her, the person has to speak calmly and take their time. Although she feels that her long-term memory is rather good, her short-term memory continues to be problematic, so Wayne has taken over the household finances.
 

Jan manages stress by praying, listening to music, and going down to the Chesapeake Bay to meditate and relax (it’s only a half mile from her home). She has also found it very helpful to keep a journal. Jan says she receives daily “pet therapy” by playing with her dog, Harley (she considers him to be her “service dog”), and for exercise, she likes to use her Nustep® machine, similar to the one she used in cardiac rehabilitation.

 

Jan also has a licensed Massage Therapist come to her home one day a week, to perform “neuro-muscular” manipulation on her arms and legs. As part of the therapy process, the MT also performs “energy work” on Jan, incorporating what she refers to as “healing music,” Although she pays for the therapist out-of-pocket, Jan is convinced that this complementary therapy has made improvements in her ability to move, and in her overall circulation.

 

In spite of all of her problems, Jan says she tries to wake up each day with a positive attitude. She says she remains upbeat by reminding herself to be grateful for the things she still has. Even though she has received many awards, and much recognition, for her work with cancer patients over the years, Jan feels that her greatest achievement in life has been proving her doctors wrong, after they told her that she would never walk or talk again. What is Jan’s greatest post-stroke challenge? She says that it’s having to give up her independence, by not being able to drive.

Jan has been on disability since 1998, because in addition to having post-stroke difficulties, she also has Myasthenia Gravis (an autoimmune disorder which destroys the nerve receptors on voluntary muscles). Since she can’t work outside the home, Jan considers her telephone and computer to be her lifelines to the world. These have not only allowed her to keep helping cancer patients and their families, but they’ve enabled her to embrace new goals and activities, as well.

 

Among those new activities was starting a bible study group that meets at her home, and creating and writing the "Dove Newsletter," which she sends out weekly, via computer. She has also hosted several chats, for the Muscular Dystrophy Association, on the topic of “MG and Positive Thinking.” And, just as she’s helped people affected by cancer, Jan also now volunteers her time to people and families affected by stroke.

 

Her other special interests include writing stories and poetry. In 2005, Jan wrote a children’s book called “The Little Bird Who Couldn’t Fly.” While pleased when asked to speak about her stroke experiences with several women's groups, she was even more delighted to read her book to a classroom of third graders, and to have received a letter from a young child, who wrote to say she used the book for a book report, and shared it with her class. An example of Jan’s writing appeared in the February, 2008, StrokeNet Newsletter, where her poem, “Paw Prints,” was published.

Click here to see the poem.

 

You could say that Jan’s “plate” is rather full. So, why does she do all of this? Because although Jan knows that stroke has changed her physically, she still wants to hold herself to a high standard. She says, “I feel I am very hard on myself. I realize I am not the Jan I once knew, but, I feel God has given me a second chance, and I need to take advantage of that, and try to keep a positive attitude. I have had to reinvent my life. I have been put on this journey in my life for a purpose.”

 

In November, 2008, it will be 5 years since Jan had her first stroke; it’s taken four years for her to progress to where she is now. She wants everyone to know that there is HOPE, and that you should never let your hope go.

 

Jan and her husband, Wayne, currently live in Churchton, Maryland, where they are doting grandparents to their five grandchildren. Jan likes to network with others who have had strokes.

 

Contact Jan through the Message Board. Her id is SedonaHeart.

 


 

Editor’s note: Member Stories is a monthly feature of StrokeNet, the monthly newsletter of The Stroke Network. If you would like your story featured, contact Deb Theriault at dtheriault@strokenetwork.org.

 


Copyright © July 2008

The Stroke Network, Inc.

P.O. Box 492 Abingdon, Maryland 21009

All rights reserved.