Here’s a sneak peek at my newest book, Against All Odds: How Twenty Courageous People Overcame Debilitating Illness, Disease, and Other Physical Challenges, where I’ll interview twenty different individuals and tell their stories about how they overcame immense odds to regain their health, rebuild their lives, and became influential role models of perseverance and passion.
Every story is different…but each of these courageous people demonstrated similar character qualities which inspired me and I’m sure they’ll encourage you as well.
Taylor’s Story: Lyme Disease
When Mary Anne first realized how sick her teenage daughter Taylor was she had no idea what a long exhausting battle it would be to (1) get an accurate diagnosis for her child and (2) locate physicians willing to work toward a cure for Taylor’s disease and not simply treat her symptoms. Mary Anne discovered firsthand how difficult it could be to find answers that were reliable, applicable to her daughter’s case, and would ultimately bring Taylor’s body back to optimal health.
As a mom and as a non-medical person, Mary Anne had to become a quick study of her daughter’s symptoms, ferreting out information from multiple sources over years time, all while Taylor grew increasingly and more severely incapacitated. Mary Anne, like countless other families in similar situations, often found herself wondering if she’d ever be able to put enough of the puzzling pieces of this illness together before it permanently compromised her daughter’s lifelong future health. But she did.
Mary Anne’s tenaciousness never allowed her to even consider giving up on finding the root cause of Taylor’s confounding symptoms. Rather, day after day, week after week, and month after month, she aggressively sought out help and information from one source after another until she found the right answers. All throughout this battle, Mary Anne kept calling out to God and asking Him, begging Him, to direct their paths. Over and over again, when there didn’t appear to be any clear-sighted answers, Mary Anne didn’t waver in continually going to the truest Source of hope and healing. This same tenacious spirit of trying to secure the best medical help kept her focused on believing God would come through for them, that He would eventually show them to the right people who would give them the right answers. And He did.
At last, after four grueling years of being misdiagnosed Taylor had both an accurate diagnosis and a long-term treatment plan. Mary Anne, while profoundly grateful for Taylor’s current physicians and her slow but marked health-improvement, still shudders in equal measure when she considers where Taylor would be today if she hadn’t doggedly kept pursuing the underlying cause of this debilitating disease called Lyme. Mary Anne likewise credits her many friends in the faith who committed themselves to daily praying for Taylor and for specifically calling on God to make their path clear. Mary Anne and Taylor are both so grateful for these people, their prayers, and God’s answer.
Nineteen-year-old Taylor Johnson has spent the last five years of her life fighting Lyme disease but for most of this time, Taylor didn’t know what was making her so sick. With minor symptoms beginning during junior high school (2004), Taylor recalls getting skin rashes all over her body that an allergist believed were caused by the school system’s new carpeting. This doctor prescribed steroids to treat the problem and Mary Anne pulled Taylor out of school for the remainder of the year whereupon she improved markedly, but only temporarily. Next came high school with musicals, band, choir and a busy academic schedule that culminated in an end of the school year, out of state field trip where Taylor contracted bronchitis (as did many of her classmates) but from which she (unlike her classmates) never fully recovered. Taylor quickly developed severe whole body aches/pain, constant-pounding headaches, her cognitive thinking ability was foggy at best, her hands and feet went numb, and despite ongoing various types of testing, no one could say what Taylor was suffering from in any definitive sense. There were telltale hints and signs pointing to Lyme even at this early stage but this was not verified for a few more years.
By now, Taylor’s symptoms had grown markedly worse and on most days she was unable to get out of bed. Her limbs were numb, she was passing out when she tried to stand up, and there weren’t any pain medications giving her relief for the continual debilitating throbbing in her head, neck, and shoulders. Though Taylor’s condition had grown so serious she truly was incapacitated and unable to attend high school classes, Mary Anne and Taylor continued to advocate for her health by researching, networking, probing anyone and everyone they came into contact with that might possibly offer additional insights and information. Their tenacity finally paid off.
Even though Taylor was under the care of a number of specialists in a variety of disciplines, her underlying condition remained a mystery until a diagnostic physician who specializes in holistic medicine tested her for Lyme disease and conclusively determined in 2008 that this was Taylor’s physical nemesis. The good news, relatively speaking, is that today Mary Anne and Taylor finally have a diagnosis and two physicians they trust who work in sync on Taylor’s behalf. The bad news is that given the previous years Taylor already had undetected Lyme in her body, it has morphed from a localized bite to a systemic illness that has disseminated and is now affecting her central nervous system.
Tragically, Taylor’s life and the quality of it has been so severely compromised due to these repeated misdiagnoses that even with present aggressive treatment that includes a mix of antibiotics which enters her body through a central line inserted under the skin of her right forearm, blood chelating, high doses of Vitamin C, daily baths with magnesium to sweat out the Lyme bacteria, she still is suffering from Lyme’s insidious spread into her organs, nervous system, and tissues.
Neither Mary Anne nor Taylor expects this battle to be over anytime soon, but they don’t give up. As part of their faith tenets, both of these women approach this problem, this disease, one day at a time. In spite of the intensity of these troubling times, Mary Anne and Taylor learned an important lesson; we’re only to focus on this moment, this challenge. It’s truly all any of us can handle…. and it’s all Christ asks of us. Whenever the uncertain future loomed large, these women would get on their knees and go to God…quoting scripture back to Him in prayer, reminding Him of His promises to care, provide, and enable them to face that day despite the Lyme…. in spite of it. Truly, both mother and daughter now understand the spiritual principle of Christ’s strength being made perfect in our weakness.
When asked what was one of the hardest challenges in dealing with ongoing chronic illness, Mary Anne replies that she didn’t want her daughter missing out on her childhood, she didn’t want Taylor to “miss” those once in a lifetime experiences you only get to have while still a youngster. So, in keeping with this desire to see to it that life would go on as normally as possible, Mary Anne dutifully enrolled Taylor in those activities she was most interested in not knowing how long or how often she’d be able to participate. It was this act of defiance against the Lyme that perhaps is most telling. Just as Taylor’s body was fighting for its life, Mary Anne fought for Taylor’s life on a completely different (but equally life-giving) dimension.
Mary Anne believes that others suffering from Lyme disease must also battle for quality of life on every front as Taylor has done, as she forced Taylor to do. Looking back, when Taylor was at her sickest during her last two years of high school, both mom and daughter recall how Mary Anne pushed Taylor to participate in her high school’s extra-curricular events and they have the photos to prove it. Specifically, Mary Anne wanted Taylor to have the experience of going to her school proms and so with characteristic tenacity, Mary Anne made it happen.
Before the big event, and while Taylor still had a PICC line (peripherally inserted central catheter) in her shoulder area, she recalls dressing in a beautiful gown, having her hair, makeup, nails professionally done and settling down on her sofa before leaving for the dance…only to collapse. Unconscious and out of energy from simply getting ready to go, Mary Anne shot a photo of her daughter at one of the peaks of her setbacks. And yet, Mary Anne was convinced that sick as Taylor was, her school memories were important enough to press forward, some successions notwithstanding.
Taylor, after given some time to re-coup, was awakened and went to the prom with her date and enjoyed a few dances before becoming sick in the ladies room and leaving early. The following year, prom time again, Taylor attended the dance but went to a separate room to take needed medicines through her PICC line during the evening. These are just two examples of precious life moments Mary Anne made certain her daughter experienced.
Taylor, for her part, is grateful her mom saw past the immediate distressing circumstances and grasped the bigger life picture by purposefully expanding their lives beyond the reaches of the Lyme disease. Taylor admits she often felt so ill it would have been easier to give up…but Taylor is every bit her mother’s daughter. Having watched her mom persist beyond all odds and remove multiple barriers to getting the best care for her, Taylor could do no less as she personally fought her way to better health one step at a time.
Both Mary Anne and Taylor are grateful for their strong community of family, friends, and neighbors who consistently came alongside them to encourage and offer emotional, spiritual, and practical supports. On days when neither of them had the stamina to keep going, mother and daughter remember meals, cards, phone calls, commitments to pray, those small but powerful tokens of love that would suddenly appear, reminding them both they were not alone and they were loved and supported. When they couldn’t believe for themselves, others would come alongside and spark their faith again by assuring them that as part of God’s family, they’d never have to face this alone. As Maryanne sums up nicely, “It really does take a community of people who care to save a person.”
Lyme Disease Facts
Lyme Disease is one of the fastest-growing infectious diseases in the United States transmitted by ticks and other carriers. What begins as a localized bite site can quickly disseminate and pervasively invade and disrupt the immune system and compromise all vital organs leaving a victim with very low quality of life.
An Expert Comments
Dr. Lauri Grossman DC CCH RSHom(Na) of New York City, NY, explains in brief how Lyme attacks a person’s body and how our bodies fight back. Dr. Grossman writes, “Lyme disease is transmitted to humans by the bite of ticks infected with a particular bacteria. Borrelia burgdorferi, the bacteria that causes Lyme disease, contains a substance that triggers an immune response from the body’s natural killer (NK) T cells, a type of white blood cell. NK T cells play a vital role in healing as they attack infection quite rapidly.”
If not treated promptly, it will eventually affect the joints, heart, and nervous system. Our human body reacts to this “infecting organism” by triggering a production of inflammatory agents to protect itself. This protective device called antibodies (the good guys) are the chemicals produced by the body’s immune system that normally fight off infection. Antibodies are actually proteins created by the body to attack unwanted bacteria and viruses. Everyone has a natural defense system that we most often call an immune system. When working correctly, a person’s healthy immune system creates a barrier that stops those foreign elements, or antigens (the bad guys), from entering the body. Now when an antigen gets past this initial barrier, the immune system has to increase its defensive measures because the battle is now being waged on the inside of the body, not on the outside.
At this point, the body produces additional white blood cells, proteins and other chemicals to step up the fight. Initially, these antibodies are trying to search out the dangerous virus/bacteria and then destroy it before it multiplies and spreads. While the immune system can recognize millions of different antigens, it cannot always keep up with or finish off completely specific bacteria or viruses without help from the outside, meaning antibiotics and other medical treatment supports administered by a physician.
As Dr. Grossman observes, “Sometimes however, the immune system is not able to completely remove bacteria from the body. So rashes may form and problems in the joints, heart and nervous system may arise. Then, additional support is needed. This support comes in two forms: one that targets the infection directly and the other that adds vitality to the body so that it retains its strength in the process. For this reason antibiotics are used to clear the infection and proper diet, exercise and rest are recommended to keep the body strong. This prevents the severe complications that arise when treatment is delayed : disabling joint and heart problems and a wide variety of emotional and mental difficulties.”
Since Taylor’s body had been fighting the Lyme disease for four years before being diagnosed, her previous treatments were not specifically targeted at the Lyme spirochete (Borrelia burgdorferi) bacteria, only at relieving her various symptoms. Thus, her case of Lyme moved from an early localized disease stage (three days to about a month) past the early disseminated disease stage (where sufferers begin to experience – skin problems, joint pain, nerve inflammation, heart arrhythmia) and into the late persistent disease stage (characterized by arthritis, severe headaches, fatigue, vision impairment, hearing, memory, concentration, and thinking problems, and pericarditis).
Although Taylor’s scenario is of the worst-case type, all throughout her struggle to regain health her body was doing its best to use its immune system to slow down Lyme’s ever-escalating attack on her body. Without our immune system’s intricate and fast-paced approach to defending our bodies, Taylor would have been much sicker, much earlier on. Even her physician described how marvelously her body was (and is) fighting its way back to excellent health, and just as Maryanne commented about it taking a community effort to save a person…in like manner, our immune system works in a systemized (community) effort to protect and preserve itself.
Dr. Grossman notes, “As Taylor’s body struggled to fight the infection as best it could, Maryanne’s diligent attention and the community’s caring efforts supported her so she had the best chance to restore her health. Their team effort allowed her to get to the prom and to participate in all those once in a lifetime experiences that Maryanne had prayed her daughter would not miss.”
Dr Lauri Grossman DC CCH RSHom(NA)
Chair, Dept of Medicine and Humanistic Studies
American Medical College of Homeopathy
201 West 72 Street #4M
New York, New York 10023