When she lost her physical sight, Jenny Peterson began seeing more than she could ever have imagined. Her recently released book, "She Walked by Faith, Not by Sight," chronicles both her harrowing medical crisis and the spiritual changes it brought about in her life.
It shouldn't have ever happened. It was just a sore throat that took 23-year-old Jenny Peterson to her local doctor in 1976 in DeSmet, South Dakota.
Within 24 hours of receiving the prescribed medicine, Jenny had an intense reaction to her medication. She was breaking out in weeping blisters. A second severe trauma began when she was hit with a second severe reaction to an intravenous administration of Keflex given to her at the emergency room.
Her eyesight was already blurry the morning she went to the ER. When she began reacting to the IV medication, her physical condition - including her eyesight - quickly grew much worse.
Her hometown doctor was aware her condition was quickly worsening and immediately made arrangements to transfer her to the nearby Sioux Falls hospital where she could be treated by a team of doctors.
"About 10 days after I was admitted to the hospital, I had no pulse or heartbeat.
The doctors called a Code Blue. I was unconscious of course, but I remember being held in God's arms that day," Jenny says. "That experience changed my life."
Jenny survived her near-death experience that day, but had a long road ahead of her. She had suffered toxic epidermal necrolysis (TEN), a potentially life-threatening dermatologic disorder "characterized by widespread erythema, necrosis and bullous detachment of the epidermis and mucous membranes, resulting in exfoliation and possible sepsis and/or death." (Medscape.com)
"I shed 100 percent of my skin, hair, fingernails and toenails and spent 96 days in the hospital," Jenny says. "I had also lost my eyesight. I was only the 7th person diagnosed with TEN and the first that survived it. Over time I would realize that, even during that very difficult situation, God had a plan for my life."
Most often, TEN is drug induced, however the disorder can be the result of infection, malignancy and vaccinations.
Some medical experts believe Stevens-Johnson syndrome (SJS) is the same as TEN. One difference between the two conditions is that TEN involves at least 30% of the body and SJS typically affects 10% of the body.
Jenny's husband, Ron wasn't certain his wife would survive her sudden and potentially fatal ordeal. Family members helped care for the couple's two young children: Chad 5 and Heather 2. While he waited by his wife's bedside, Ron maintained a daily journal about what was happening to her, him and their children.
"Chad turned six and Heather turned three while I was in the hospital," Jenny says. "The doctors did everything they could to keep me comfortable. The doctors told Ron there was a limit to the amount of physical stress my body could endure."
Jenny spent 60 days in the hospital's intensive care unit. Pain medications, including Demerol, were used to help ease her intense agony. As she began to recover and plans were made for her release, physicians worked at weaning her off the pain medication.
"By then I was addicted to the pain killers," Jenny says. "When I didn't get them, I had muscle cramps and a great deal of discomfort. After I left the hospital, there was a period when a nurse came to our home every evening to give me a pain medication injection. We lived just a couple of blocks from the hospital. It took a while before I was able to stop using the medication."
One of the effects of Jenny's severe illness was the scarring shut of her eyelids when she shed her skin. Doctors were hopeful that, once they were able to reopen her eyes, her sight would be normal.
"I kept believing I would see again," Jenny says. "But that isn't how things progressed. By the time I went home, my eyes weren't scarred shut. I could see shapes, colors and the blurred image of a face. It was quite a shock to come to grips with the fact that I would be legally blind."
Once she returned home, having won her battle with this rare disease, Jenny faced new challenges. She had a husband and two children who needed her as a wife and mother. That meant cooking, house cleaning and many other duties. But she couldn't see.
"My husband kept telling me, 'We'll work this out.' His parents came to live with us and I am so thankful for them," Jenny says. "They helped so much as I learned how to do things without seeing."
Cooking was one of Jenny's biggest challenges. In her book she shares numerous experiences she encountered at first. The many mistakes and steep and sudden learning curve left her with plenty of anger and bitterness - for a time.
"There were days when I thought it would be easier to keep taking the drugs so I wouldn't have to endure all the different kinds of pain each day brought," Jenny says. "But I knew that wasn't fair to my family and that eventually I had to face the reality of my situation."
Jenny's children were far too young to make sense of what had happened to their mother.
None of the changes necessary to adapting to Jenny's new challenges happened quickly, but they did eventually happen.
"For the next 33 years, every time we heard about a medical advancement related to restoring eyesight, we checked it out," Jenny says. "I visited doctors in Ohio and went through 14 surgeries but none of them brought my eyesight back."
Finally, Jenny visited Yantkon optometrists, Dr. Thomas Willcockson and Dr. John Willcockson. Dr. Tom first opened his optometric office in Yankton in 1950. He sent her to New York where doctors treated Jenny with a Cordona Corneal implant.
"That brought back some of my vision. But it was like looking down the barrel of a gun," she says. "I could see but my field of vision was very narrow. For the next two years, my body kept wanting to reject the implant."
It was early in 1980 when Jenny's left optic nerve quit and she was back seeing through blurry vision. While the failure was disappointing, it was also somewhat of a relief.
"We wouldn't have to make constant travel arrangements for treatment and docor visits," Jenny says. "That was difficult for my husband, who was teaching at that time. I had done everything doctors told me to do, but I was back where I started."
Jenny's bad news didn't get better for a while. Over the next 20 years nothing could be done surgically to improve sight in her right eye. None of the doctors she saw during that time examined her left eye. In 2009, when she visited Johns Hopkins, they did a routine scan on both eyes and found melanoma in the left eye. The discovery took her and her husband to Mayo Clinic to have the cancerous eye removed.
"When people meet me, they're all but positive I can see in that eye, but I can't," Jenny says. "It's just a very good prosthesis."
About that same time, Jenny was developing glaucoma in her right eye. The cornea was drying out and breaking down. Doctors knew if they didn't come up with a resolution, Jenny would lose all hope of ever seeing with her right eye. The corneal doctor at Mayo Clinic discussed shunts for the glaucoma pressure and a Boston K-Prosthesis or artificial cornea.
"They told me they could put a Boston K-Pro in my eye, which would save the eye and give me some sight," Jenny says. "I had to go home and pray about it. I didn't want another artificial eye. I also didn't want to endure the anti-rejection treatment."
In the end, Jenny consented to the final surgery. The morning after surgery when the doctor removed her eye patch, she saw the yellow stripes on his tie.
"I had 20-30 vision which lasted about five years," Jenny says.
"After that, doctors were able to replace the first implant and I had 20-30 vision again. As long as the optic nerve and retina in that eye remain healthy, doctors can repeat the implant about every five years."
Through all her experiences, Jenny never considered writing a book. However, she often shared her story with groups of women, using her experience to offer encouragement to others who seemed to be facing impossible situations.
"Never give up," she tells them. "Some women I've talked to have been so moved and asked me to write my story. The heart of my story is about how God worked in my life all those 33 years when my vision was taken away. I believe God used that time to bring me to the place He wanted me to be."
To develop her book, Jenny took her husband's journal and integrated her own memories into his writing. Her sister, Cathy helped her edit the final draft.
"While working on the editing of the book, we were at a family reunion in a wooded area. My sister took a picture of a road there that had a big curve in it," Jenny says. "She told me that was my story, a journey along a road that was anything but straight. That image is on the cover of my book."
Jenny self published her book and offers it when she speaks. She also has a website and books can be ordered through the site. Her hope is that what she learned throughout her ordeal gives others new hope and courage to finish their own journey, no matter how winding the path.
"It's my heart's desire to share how God worked in my life and how I gained faith through all of it. I never gave up hope that I'd regain my vision," Jenny says. "You can't ever give up."
More information about Jenny and her book is available at www.shewalkedbyfaith.com.
