By Judi Markowitz / Detroit
Evie Germansky-Scheinfield making every day count
It’s been called “the suicide disease.” Some people tragically succumb to the unbearable pain that Complex Regional Pain Syndrome (CRPS) inflicts. There is no cure and treatment doesn’t necessarily alter the constant pain.
According to the Spero Clinic, which specializes in treating patients with CRPS, “35 percent of sufferers eventually report symptoms throughout the body. The disease may remain localized, spread slowly over years, or progress rapidly like a wildfire out of control.” It can be a never-ending nightmare.
Evie Germansky-Scheinfield knows these words all too well. CRPS has overtaken her life and wreaked havoc. She is a prisoner of this disease, but she has not given in or let it take away her will to keep moving forward.
Evie, a 70-year-old who lives in West Bloomfield. Mich., is a determined woman with a positive mindset. When we spoke two weeks ago, she told me, “I know the alternative and I’m not going to be a statistic.”
Evie and I grew up in the same city–Oak Park, Mich. Prior to my family’s move to this small suburb, our mothers became acquainted while living on Mendota Street in Detroit. They told us stories of walking Evie and me in our baby carriages around the neighborhood when we were infants. Our late mothers remained friends for over 60-plus years. Like many Jewish families in Detroit, mine joined the exodus to the suburbs in 1951. Evie’s family followed shortly thereafter.
I believe that Evie’s strength was derived from her parents’ experience in the Holocaust. They were survivors and their resolve carried them through the darkest of times. Hearing the stories of their struggles while she was growing up reinforced Evie’s determination to carry on. She has been battling CRPS for more than 10 years.
In February 2013, Evie had foot surgery for torn tendons. Says Evie, “I was a big walker and I clocked in about 12 miles a week. I thought I’d just pick up with my routine after surgery.” But unfortunately, Evie’s life took an unexpected turn. Eight days after the surgery, she says, “I woke up in the morning with excruciating pain in my foot. I was in a panic. I called my podiatrist, and he immediately sent me to a pain specialist. I was then diagnosed with RSD– Reflex Sympathetic Dystrophy Syndrome. The name was changed later to CRPS.”
Evie describes the transformation of her foot from being a normal size to being swollen beyond recognition. Her foot is turned in at a 90-degree angle and she can’t straighten it out — it’s permanent. As for wearing a shoe on this foot— it’s been replaced with a large, bootie type sock.
Ten days after her surgery, Evie was referred to an anesthesiologist-pain management specialist, Dr. Jeffrey Kimpson. Evie has been his patient since their initial meeting and has a terrific relationship with him. Evie says, “Dr. Kimpson understands my pain and does everything he can to help.”
A trip to the Cleveland Clinic was arranged by Evie's brother-in-law, Sam Scheinfield, in late 2013. Dr. Michael Stanton Hicks was the foremost authority on the disease and Evie was anxious to meet with him. A nerve stimulator was suggested, and Evie was excited for the prospect of relief from constant pain. Unfortunately, it didn’t work.
After being prescribed a myriad of pain medications that didn’t work, it was suggested that Evie make an appointment with a group of specialists at Providence Hospital in Novi, Mich. It was 2016 and Evie hoped for a better method to relieve her unbearable pain.
After reviewing Evie’s case, a team of doctors suggested that a pain pump might alleviate her symptoms. Evie grabbed the opportunity. Sadly, it was an unfolding disaster. Says Evie, “My spine was nicked during the procedure, and I was hospitalized for two months. I had eight surgeries in the interim. It took two weeks to stop the medicine from going into my body.”
To add insult to injury, while Evie was still hospitalized, she was given a medication that contained penicillin — she had an anaphylactic reaction and nearly died. After this debacle it took a long time to recuperate.
After these failed procedures, Evie had to reassess her options. She knew that pain was now her unwanted companion. Evie says, “I couldn’t quit. I had to have a positive attitude and not let CRPS take me down. I was prepared to fight.”
But it was difficult to digest all the things of which she had to let go. Evie’s career as a cardiovascular tech ended — she had to retire early. Evie recalls, “It made me incredibly sad because I loved my work. Not seeing my coworkers and the patients created a void in my life.”
All the physical activities Evie formerly enjoyed came to a screeching halt. A life without exercising on both feet, dancing, playing sports— all these pursuits were now history. Evie’s mobility was relegated to using a scooter in order to get around. Learning to navigate her new terrain was of the utmost importance.
Driving presented another hurdle. Evie was not about to give up her independence. Says Evie, “I knew I had to switch my driving habits and learn to feel comfortable with my left foot. I adapted immediately and it never became an issue, and I haven’t looked back. I am left-handed so it was an easy transition. I was surprised.”
Evie attended a class sponsored through the Michigan Motor Vehicles Division and it was determined that she was a safe driver given her new set of circumstances. Evie was relieved.
A new routine had to be established when getting to and from the car. I have seen Evie in action for years and she manages seamlessly. A walker is always in the hatch of her SUV — it’s easily accessible. Once the walker is removed , Evie folds down the handle of the scooter and places it in the car. The walker is used while moving into the driver’s seat and then placed in the back of the car. Evie doesn’t need help with this routine — she has mastered it with repeat performances.
Family has been Evie’s saving grace. Says Evie, “My children and stepchildren have been incredibly supportive. The grandkids call my injury “Grandma’s boo-boo.” Except for my oldest granddaughter, they haven’t known me any other way.” Visits with the grandchildren are scheduled on the weekends — driving to Ann Arbor and Rochester. The joy from these visits keeps Evie coming back for more.
Her husband Dennis is a true superstar when it comes to helping around the house. She told me he’s a phenomenal help with anything she needs. Dennis plans the meals. Says Evie, “He either cooks or we carry in dinner. Dennis does the bulk of the grocery shopping and runs errands for the household.” Evie added that Dennis helps her navigate around the house and ensures her safety. He is resolute that Evie gets out of the house every day.
Evie has been able to continue a few activities she enjoyed before her unwanted retirement. She says, “If I don’t have scheduled plans I will think about my condition and dwell on the pain. It’s not productive.” Evie plays mahjong and canasta four days a week. She stays busy with lunch and dinner dates as well.
When Evie’s hope for a cure was hijacked and any vestige of her former life had disappeared, she became depressed and needed counseling. She turned to therapy. Barbara Ruskin, Evie’s therapist, helped her to recognize that that she could have a meaningful life, even if it looked very different than before.
After years of intensive talk therapy, Evie says, “My therapist said she admires my strength and that when she has a difficult day, her thoughts turn to me. Barbara recognizes that I have worked hard to overcome my difficulties, as much as possible.”
Life is full of surprises, and at times, the surprise can be devastating. But when I talk with my longtime friend, it is as if nothing has changed. Yes, physically Evie is now different, but her personality and demeanor are a constant. She fights every day to continue with her routine of living in the moment—and that determination has kept her in the flow of life with her friends and family.
Judi Markowitz is a retired high school English teacher of 34 years. She primarily taught 12th grade and had the pleasure of her three sons gracing her classes. In addition, she taught debate, forensics, and Detroit film. Judi has four adult children and seven wonderful grandchildren. She is married to Jeffrey Markowitz, whom she met in high school.
Judi grew up in Oak Park, Mich. which had a stellar school district, with excellent teachers. The city provided activities for all–and there were even sidewalks. Judi moved to Huntington Woods as an adult, which is a half mile from her childhood home. She wanted the same experience for her children as she had growing up, and Huntington Woods provided that. The View from Four Foot Two is Judi’s first book.