A Forgotten Voice: The Elizabeth Chalker Story
by Laura Zeller
www.wildcondor.com
Maya Angelou once said, "People will forget what you said. They will forget what you did. But they will never forget how you made them feel."
And so begins my story about Elizabeth Chalker, a 39-year-old woman I met several years ago. The first time I spoke with Elizabeth on the phone, I had never heard a voice so weak. It is something I have never forgotten, and never will. As I struggled to understand Elizabeth's quiet, strained words, I could not help but feel instantly inspired. Elizabeth's story stands apart from all the others in a profound, desperate way. Elizabeth is not unique in that she suffers from late-stage neurological Lyme disease and its co-infections, a controversial disease that affects tens of thousands of people worldwide. What places Elizabeth Chalker in a special league of her own is the way she makes people feel even as she struggles to get her words out because of the devastation the diseases have inflicted on her body.
Like many others afflicted with tick borne illness, Elizabeth has been sick for over half her life. In spite of severe symptoms that began at the age of 12, Elizabeth managed to excel in every life arena; from talented athlete to a brilliant Psychologist and Addictions Counselor; to having meaningful and lasting personal relationships; to always finding time to donate her gifts and talents to her church, to youth, and to her community. While only 3 chapters short of the dissertation for her third graduate degree, Elizabeth was overcome by her illness and forced into a life of pain, debilitation, and isolation. By the time she finally received an accurate diagnosis of Lyme disease and co-infections, her body was already shutting down.
As if Lyme disease were not enough, Elizabeth also suffers from endometriosis.
Endometriosis is a disease in which normally occurring endometrial cells grow and implant in areas outside of the uterus. Those cells bleed as if they were mini uteruses, leaving fluid and blood inside the pelvic cavity that trickles down, causing organs to attach to each other from the adhesions the fluid and blood form. The displaced endometrial tissue also causes swelling in the pelvic cavity where there is no extra room, resulting in severe and debilitating physical pain.
The kind of endometriosis that Elizabeth has is unique in that it has been found not only on her reproductive organs, such as her uterus and ovaries, it has also been found on her ureters, the gutter space by her liver, her bowel, bladder, the round ligaments; her pelvic walls where it was embedded, both pararectal spaces, and the rectovaginal septum. Her endometriosis causes relentless pain and suffering 24/7, from the top of her head to her toes; pain that even the strongest pain medications cannot control.
Elizabeth has had 9 surgeries for the refractive endometriosis and currently needs a tenth, but doctors say she would likely not survive another surgery. She is not even able to take hormone pills that are routinely used to help the symptoms of endometriosis, as her body is allergic.
The Lyme disease(s) and endometriosis combined cause Elizabeth unimaginable pain and torture every day. Some of her daily symptoms include uncontrollable twitching in her muscles that feels like snapping rubber bands, 24-hour migraines, horrific pelvic, back and abdominal pain, excruciating bone and organ pain, chronic nausea, dizziness like being on a boat with seas being rougher at different times, extreme light and sound sensitivity, shaking, cold and heat sensitivity, difficulty breathing, brain fog, and other neurological symptoms such as severe insomnia which prevents her from sleeping more than a half hour to an hour at a time. Because of the intense weakness, pain in her bones, and dysautonomia, the only way Elizabeth can get around her small apartment the majority of the time is by crawling or using a wheel chair.
Due to the severity of her symptoms, Elizabeth spends 90 to 100% of each day in bed with minimal movement; in a cold (65-degree) dark room with minimal light or noise. Unable to even watch TV most of the time due to the noise and overstimulation to her nervous system, she must frequently lay still with an ice pack on her head and a heating pad on her stomach, struggling to find a position that causes the least pain. She struggles to make herself something to eat and to move around as much as possible to help herself. Additionally, she earnestly strives to remain compliant with the minimal medical protocols she is able to do at this time, due to lack of financial resources.
Aside from a few texts and perhaps a few short phone calls per week, Elizabeth's only physical contact with the outside world consists of Dr. Corey Cameron, a chiropractor, who is a mother to her. Dr. Cameron is devoted to Elizabeth, visiting her a few days per week when she is in town. The rest of the time Elizabeth goes through the day-to-day struggles alone with with no one but her four-legged “son” Symon, a Corgi/Shepherd mix, at her side. Imagine the terror of living in this type of torture alone!
"Elizabeth is a remarkable person with a strength and faith that I have never seen,” says Dr. Cameron. "No matter how beaten down, discarded, debilitated, physically sick or alone she is, she keeps getting back up and meeting every challenge she faces. Elizabeth lives a hell that ten healthy people would not survive. She does so with grace, integrity, and realness that I have never known in anyone else. “Elizabeth is an extremely generous woman who now needs our help as a people, as a community, and as a society. The devastation Elizabeth suffers every moment as a result of Lyme, co-infections, and endometriosis is incomprehensible. The abuse I have witnessed her suffer from others, friends, her church, 'healers', and many in the medical community is unfathomable. Elizabeth's resources are exhausted from years of being misdiagnosed and being administered improper treatments as a result. Elizabeth keeps her faith through it all and remarkably maintains a positive attitude. She is a daughter to me and I love and respect her very much. She has so much to give the world and deserves the chance to be well."
With no one in the daily struggles with Elizabeth but Dr. Cameron, whose busy schedule prevents her from being with Elizabeth as often as she'd like, Elizabeth has had to muster up supernatural strength she does not possess to plow through numerous roadblocks and obstacles, to do ongoing research, sort through emails, make phone calls when she is able to speak audibly enough, and write letters to doctors, charities, businesses, individuals, churches, organizations, local representatives and the President of the USA to find the help and the resources to get the life-saving medical treatment she has been fighting over half of her life to receive.
Elizabeth knew in high school that there was something physically wrong in her body. In the face of adversity of not being believed or taken seriously by most closest to her or by many in the medical community, she kept persevering to find the answers necessary to uncover the medical cause(s) of her years of suffering, and to seek the treatment that will help save her life and restore her health. Against all odds, and having to search alone the majority of the time, Elizabeth met each challenge on this torturous road with grace and integrity. She continues to endure and meet the challenges of living with diseases (Endometriosis and Lyme) that carry with them an unforgiving stigma and overall lack of due respect and attention regarding the seriousness, and life-taking nature of each.
Elizabeth has a very minimal support system and has even been largely abandoned, rejected and sometimes abused over the years by her church, and even by many in the medical community, including Lyme experts, who have basically given up on her and have refused her medical treatment. Many have told her “it’s too late for you…your case is too
complicated… your case would require too much time…you have had Lyme too long…you will just die a very slow agonizing death."
Elizabeth has seldom been met with understanding or even simple human regard or consideration by many of those closest to her, by many in the medical field , or by many in the community. She has been degraded as a human being and repeatedly given the message that her life has no value or worth.
Regardless of her isolation and severely debilitated state, Elizabeth does all she can to help anyone in need, especially other Lyme disease victims, by sending an encouraging text message or email, praying with someone on the phone, sharing information and awareness, and acting as an advocate for those who are unable to speak for themselves. That's why I created this quote to define Elizabeth: "Sometimes the weakest voice can speak the most powerful words and be the loudest one heard." Because of Elizabeth, countless people have found the help they needed, even while she has been denied.
With virtually no treatment for the diseases that have wreaked havoc in her body
for over half her life, combined with the immense viral, parasitic and bacterial load in her system, Elizabeth's body is extremely weak and compromised.
The only consistent care Elizabeth has received during this long battle with Lyme disease(s) has taken place over the past two plus years has been with a Naturopathic Doctor on the West Coast of the United States. Elizabeth recognizes Claire Riendeau N.D., N.M.D., whom she names as a very gifted, committed, compassionate, and loyal doctor who has been providing guidance long distance to help Elizabeth. Elizabeth further states, "Dr. Riendeau is relentless in her determination to continually learn in order to help guide her patients with the utmost expertise." Dr. Riendeau continues to be a support and advocate for Elizabeth in this fight to stay alive, and in continuing to seek the medical help she needs to save her life and help her to regain her health. But now the time has come that Elizabeth must receive in-person, advanced treatment to stay alive.
After more than 20 years of searching for answers, Elizabeth finally has a team of medical doctors and holistic practitioners who are willing to take on her very complex case. She will need to relocate to Washington State to receive the daily medical care.
Elizabeth's treatment will be long in duration and intensive. Before the doctors can even begin to address Elizabeth's genetic inability to detox the toxins and neurotoxins the diseases emit, and before Elizabeth could survive targeted treatment to eradicate the Lyme and co-infections, she will need many months of gentle, yet thorough comprehensive treatment to build up her failing organ systems and to strengthen her frail body.
However, in order for Elizabeth to receive this life-saving treatment which is her only chance of survival, she will need a private plane to transport her from South Florida to Washington State, as well as upwards of $100,000 per year for treatment. She will also need to find a place to live, as well as a caring individual who can assist her by taking her to her frequent medical appointments and offering help around the house. That person has yet to emerge. And without being able to work for the last 6 years, Elizabeth's finances are exhausted.
For now, Elizabeth is hanging on by a thread. She is in an extremely fragile state, too weak to even talk most of the time. She has zero quality of life. The level of debility and the chronic state of diseases has caused doctors to scratch their heads and wonder how she is still alive. That is, the ones who don't fully realize the strength of her spirit.
Despite her living hell, Elizabeth's faith is unwavering. She says, "What's happening is so much bigger than me, I don't have the strength on my own to continue persevering day in and out in this torture. My relationship with God is what's most important to me and my life is His. I have begged for Him to come get me and take me home to Heaven. He hasn't. I will not take my own life and I will not give up or quit. I want to be well and out using the gifts and talents God has given me in serving, loving, and living."
Elizabeth gratefully acknowledges, "Without Corey's love, support, understanding, faithfulness, care, commitment, mothering, strength, compassion, friendship, patience, graciousness, expertise, advocacy and loyalty, I would not have survived these past many years." She adds, "Without the generosity of my childhood friend, Andy Whiteside, I would not have had a roof over my head or life-sustaining medical necessities.” But now it's time for others to step up to the plate to help this beautiful young woman receive the gift of life.
As is characteristic of Elizabeth, her main purpose in wanting her story told is in the hopes of raising awareness in order to prevent others from having to endure the same hell. As illustrated by the title of this article, A Forgotten Voice, one of the many passions in Elizabeth's heart is to close the gap that society has allowed her to fall through because of her age, race, and lack of children, which sadly affords charities, businesses, individuals and the government a "way out" from offering her help. Elizabeth does not want anyone else to experience feeling unimportant or unworthy of such help or to be denied help as a result of belonging to this particular group of society.
"There is something about Elizabeth Chalker you can't quite put your finger on," says supporter Helen Raser, "It doesn't take long to see she is an unselfish, honest, compassionate, caring, loving, brilliant human being that anyone would be blessed to have as a friend. But there is something much more about her that can't be defined. Once you've gotten to know Elizabeth, you are left with an unexplainable sense of something special, something extraordinary … something Godly. There is an essence that transcends from her very core that once you feel it, it remains with you forever. She inspires you to be a better person, to have more courage and endurance in facing your trials, and to live solely by faith. You are forever transformed in the most positive way for having known her."
Make no mistake about it; if you don't know Elizabeth yet, you will. That's because once her health is restored, she will not be one to fade into the sunset only to enjoy the time she missed out on during her sick years. God knows there are too many of those. Do not doubt for a minute that Elizabeth will keep her promise to pay it forward, to fight harder than ever for everyone who is too sick to fight for themselves. Just as she was once a fierce advocate and a voice for youth and families, she will once again be relentless in persevering, persisting, enduring and pushing through any and every obstacle to effect positive change in the treatment of Lyme disease and co-infections. Until she draws her last breath, you can rest assured that Elizabeth will never stop learning nor will she cease from educating, supporting, and loving everyone that God puts in her path in an effort to eradicate the suffering caused by this treacherous disease.
When she is not praying for people she loves, Elizabeth's head swims with dreams and aspirations, all of which exude service to others and making the world a little better; her whole being filled with a strong desire to leave a legacy that would demonstrate what true service, faith and compassion are. From deep within her soul, Elizabeth shines with a special sparkle. Elizabeth is like a beautiful angel, lovingly touching so many peoples' lives, all the while trapped within a broken body. She is a visionary who has the drive, the intellect, the internal resources, the work ethic, the integrity, and the heart to bring such dreams to fruition. She needs the health to carry them out.
Elizabeth needs our help now! In order to achieve her goals, she must first get the life-saving treatment she desperately needs, or the sad fact is she will die. We cannot stand by idly waiting for this to happen, for the world would suffer immeasurably with her loss. If we help Elizabeth, we will be helping the countless others she will continue to touch. The world needs Elizabeth Chalker! She can and will make a difference.
Why help Elizabeth? Dr. Cameron puts it best, "Because we need her light in this dark world."
You might say to yourself "Hey! What about me? I'm sick too and I need the same help. Why should I help this woman?" Well, we all have to help each other and start somewhere, so why not Elizabeth? Hopefully someone somewhere will have a networking connection to help save this woman's life. When I look at Elizabeth, I see myself, or rather what my life would have been like if I never got adequate Lyme treatment. I was lucky, and I fought to survive just like Elizabeth. But surviving is not living, as you know. So many Lyme patients I talk to complain about taking their medicine and other trivial things when they should be grateful that they are ALIVE and have access to treatment. Let's give Elizabeth HER chance to get the access she has been denied for so long. She deserves to LIVE!
Please donate any amount you can to save this beautiful young woman who will give so much to the world. If you are interested in organizing a fundraiser for Elizabeth - have any contacts for a private jet to transport her - or know of a caring individual to assist her in Washington State, please contact us or make a donation at
www.helpelizabeth.net.
