…an abridged excerpt from the book,
Dancing through Life with Guts Grace & Gusto
Waltzing across the dance floor in Vienna, Austria, I was having one of those “Please, pinch me if this is real!” moments. My husband, Rick, our two daughters, and I had just visited a Bavarian castle perched magnificently atop the Austrian Alps, the inspiration for Disney’s Cinderella’s castle. Indeed, our family was smack dab in the middle of a fairytale vacation!
As a Boomer mom who sought balance between competing priorities of work and family, I relished our family getaways, a respite from the daily bustle in the Strauss house. My career was focused on writing and speaking about empowered living–creating positive connections, the power of winning attitudes, and finding balance in the whirlings of 21st century life. Right before leaving on the trip I was frantically finishing the manuscript for the book, Get Along with Anyone, Anytime, Anywhere and looking forward to soaking up some solace for our stressed-out spirits.
Our family getaways gave us the time and opportunity to collect our thoughts, escape from routines, and enjoy some bonding time. So here we were in a magical city, dancing to the music of the Strauss Waltz. Little did we know that life as we knew it, was about to come to a most unexpected, tragic end.
Through the years, Rick and I enjoyed creating unforgettable memories for our family and relished every chance to rev up our adventurous souls somewhere beyond. While enjoying the breathtaking splendor of Bavaria, Rick and I began plotting more travel adventures since we were soon to be empty-nesters. Costa Rica was calling us next with its lush landscapes, zip-wire adventures, and tropical rainforests. Ahhh! . . .our next escape into paradise.
Just six months later, those dreams were dashed when the unexpected suddenly turned our family upside down, bringing life as we knew it to a screeching halt. One morning in March 2004, I awoke to find Rick slumped over his computer.
Something was horribly wrong. In more than 30 years of knowing Rick, he rarely even suffered a cold or flu. Well-known in legal circles for his brilliant work as a vocational rehabilitation consultant, Rick was sharp, intelligent, and articulate. Now, he admitted he was unable to focus or concentrate. His behavior was most peculiar and he spoke strangely. Additionally, Rick had tremors, extreme sensitivity to light, and a bloody rash over half his body. At the recommendation of his doctor, who suspected a grim diagnosis, Rick was hospitalized for tests and observation but released a week later without a definitive diagnosis.
Back at home, Rick’s behavior became more bizarre and his symptoms multiplied. He’d walk halfway up the stairs and then stop. He collapsed occasionally and couldn’t remember what had happened. Sometimes he could barely speak, while at other times he couldn’t stop talking, releasing a string of almost inaudible words. On several occasions he experienced convulsions, writhing on the floor screaming that his brain was “electric.” Whatever was wrong, robbed him of his personality and his well-known wit. The man I had known for three decades disappeared, as if his life force had been sucked right out of him.
Month after month, neither doctors, nor all the extensive medical tests they ordered, could offer a diagnosis that included all of his symptoms. They suspected dementia—a shocking reality at the age of just 59, but that couldn’t explain all the other symptoms he suffered in addition to his cognitive decline and change in behavior.
I sought healing and answers in addition to traditional medicine—acupuncture, acupressure, homeopathy, chelation IV drips, detox tablets, magnetic clay, essential oils, energy healings, prayer vigils, and more. Nothing was working.
A Breakthrough Discovery
In January 2005, Rick was admitted again to the hospital for more tests and treatment. As he lay in his hospital bed barely able to move or speak and with hope for recovery draining from his near lifeless body, I miraculously received a phone call from Arnold Sanow, my co-author of Get Along, who told me about his client, Cindi, who was also suffering from a debilitating illness that sounded strangely familiar to Rick’s. She wanted to share with me the research she had discovered in seeking answers regarding her own illness. Cindi arrived with research in hand about toxin-associated illnesses, and together we rushed to the hospital.
Coincidentally, Rick’s doctor was just making his rounds and admitted he didn’t really know what was wrong with Rick and welcomed new information that might prove helpful. At Cindi’s suggestion, he authorized a simple eye test to screen for neurotoxin exposure. Within a matter of minutes, Rick’s results offered more clues to the root of his medical mystery. But it would be several months before we were able to consult with the doctor who had become an authority on biotoxin illnesses.
After more specific tests at the biotoxin research center, we learned that Rick had a “dreaded genotype,” which compromises the body’s ability to remove toxins. This caused a series of spiraling events resulting in symptoms which changed in duration and severity–crushing headaches, gut-wrenching GI pain, mobility issues, occasional paralysis, brain dysfunction, exhaustion, breathing difficulties, tremors, and overall debilitation.
Over his lifetime, Rick had been exposed to a multitude of toxic agents: mold, Lyme disease contracted by a deer tick bite (not easily or accurately confirmed through existing tests); and long-term exposure to chemical solvents including formaldehyde, benzene, and others while growing up in his family’s leather tanning factory. Added to this was Rick’s daily exposure to 21st-century environmental pollutants in our air, food, and water and his body’s inability to process them out.
As a result, Rick’s body was in toxic overload, a condition referred to as “body burden.” He didn’t readily respond to experimental therapies for removing biotoxins. His body was so compromised, his health continued to deteriorate.
Rick’s pain became so severe in August 2005 hospice care was called in to administer drugs for pain management. Yet, the drugs didn’t do much to take his pain away, and I felt helpless to do anything to bring him comfort as I watched him suffer in agony.
After a year and a half of scrambling everywhere in search of answers and healing, people reassured me that I had done whatever I could. Through the exhausting and confusing journey I realized the situation was indeed out of my hands. A care consultant advised his placement in an assisted living facility to manage his care.
Since research, testing and treatment regarding toxicity’s impact upon health today is extremely limited or available to many doctors, we had no prognosis. However long this condition was to wage war on Rick’s body, this was an endurance test for our family.
My emotions were raw from several deathbed scenes when the end seemed inevitable and relief welcomed by Rick. When his pain became unbearable, we prayed for release. When it subsided for a time, I climbed once again aboard the roller coaster of hope for another trip around the track. I was advised to make funeral arrangements.
It was at this time when one of my friends, in a continuing effort to help, suggested a nutritional full-body cleansing program to remove impurities. It was proving helpful for others suffering a wide array of maladies.. I was skeptical since so many other therapies had failed to make any difference, but I was willing to give it a try.
A week after beginning the nutritional cleansing program, positive changes were taking place. Rick was moving better. Flickers of personality and animation burst forth. Rick’s pain diminished and he was discharged from hospice care a month later. Once again, hope was restored. I became optimistic about bringing him home from assisted living. But hope faded again with the continuing complications of his biotoxic illness. It was a deflating setback.
Now, my life was consumed with countless details and piles of paperwork. Adding to the pressure, I was the sole sibling responsible for coordinating care for my elderly mother, whose own health and mental faculties were failing. My “Sandwich Generation” shoulders were now heavily weighted and my plate of responsibilities overflowing. An outpouring of kindness and support from friends, neighbors, and even strangers was grace at work, lightening my load. They served as guides through the darkest of days and uplifted my spirits.
With Rick’s continued regimen of nutritional cleansing, his physical health seemed to improve. Once again, my optimism took root. I thought I could manage Rick’s care and brought him back home in June 2006. I never would have imagined the disastrous consequences that followed.
Soon after Rick returned home, I encouraged him to find new purpose again in his life. Along with the many losses he suffered, his sense of identity had been shattered. Rick’s career had focused on helping disabled clients. Now he shared their same fate. My career included writing and presenting programs about the winning spirit, and I was doing my best to fire mine up while on this unfamiliar course.
Rick fiercely wanted to regain his independence so he renewed his driver’s license. At first, I was encouraged that he was taking steps to re-engage in his life. But not long afterwards, I noticed him blacking out at home. I later discovered he had been involved in an unreported accident. I pleaded with him to stop driving and not risk his own safety or the safety of others. I was shocked at his refusal. This was not characteristic of his once compassionate demeanor.
Since Rick had been residing in assisted living for more than a year, I hadn’t observed him 24/7. Although his physical health seemed better, he said and did things he never would have before his health failed. My daughters and I were now living with a complete stranger.
Rick had more tests to determine what was going on. Neuropsychological testing confirmed deficiencies in his executive skills functioning which were causing uncharacteristic changes in his behavior. In reviewing the findings with two neuropsychologists, the cause of his personality changes became clear—the frontal lobes of his brain were permanently damaged. This explained all the changes we were witnessing. The frontal lobes are considered our emotional control center and home to our personality. These are involved in motor function, problem solving, spontaneity, memory, language, initiation, judgment, impulse control, and dramatic changes in social behavior. When the brain is damaged in this area, people can act and behave very differently, and sometimes, dangerously.
Rick’s behavior was indeed impulsive and irrational. He moved out to live on his own, and he continued driving on a revoked license, jeopardizing his safety and others. He blocked my access to his medical and mental health care, and he revoked my legal rights to help him. I took solace in knowing his actions stemmed from his impaired brain, but that provided little comfort in the ramifications that resulted
Although family, friends, colleagues and his doctors urged him to get treatment, with inadequate mental healthlaws in Virginia, Rick wasn’t required to do so without his permission. To me, this is an insane law! When someone has brain damage that affects their rational judgment, how can they make a responsible choice? Legal intervention is required.
Not being able to access care for Rick happened during the same time as the tragic events at Virginia Tech. I was living a nightmare with my hands being legally tied. Doctors refused to speak to me because Rick had removed my legal right to help him get medical care. No one wanted to step forward for fear of legal entanglements.
My goal was to protect him, as well as the safety of others, but that wasn’t possible as long as he remained independent. I sought legal recourse and finally was able to become Rick’s co-guardian along with one of our trusted friends.
When we considered options with a care consultant, I was indeed thankful that Rick and I had purchased long-term care insurance less than two years before he became ill. I thought it would be decades before one of us would need to initiate a claim. I couldn’t even imagine ever really needing it since we were both very active and healthy. Our decision to purchase long-term care insurance turned out to be the best investment we ever made.
Upon the recommendations from his medical team and a care consultant Rick now resides permanently in a long-term care facility, where he is protected and is receiving quality care.
Got Me Through My Darkest Days
With this long siege of chaos and confusion, I knew that my training and experience as a professional speaker was preparing me to deliver powerful messages of hope. Now, I share many valuable lessons of how to stay strong in the midst of chaos, how to prepare for the unexpected, how to tap into personal power and wisdom, and to keep your wits through it all to sustain your well-being.
In addition to speaking, I’ve co-authored the book, Dancing through Life with Guts Grace & Gusto and to help all who face challenges in their health, their relationships, their jobs, their finances, or their well-being.
Life is all about change. Our adaptation is fundamental to managing it. We all face challenges and obstacles in our lives and our careers. Rick’s illness shattered and rearranged my life as well as our daughters. Through all the heartache and turmoil, I discovered the strength and support I needed to find my way through a very difficult journey in my life and emerge stronger, wiser and with greater purpose.
I am passionate about speaking to groups, organizations and businesses about how we can find our personal courage to navigate change and still succeed in the face of our challenges. Yes, it does take Guts, Grace and Gusto! Audiences are inspired, uplifted, and encouraged by my presentations, and they receive actionable steps they can take to move forward.
Contact me today to discuss how I can bring an inspiring, authentic, content-rich presentation about meeting challenges in work, relationships and life, to your organization.
With gusto,
Coauthor, Dancing through Life with Guts Grace & Gusto
Washington, DC
