Is this just another PREMATURE DEATH caused by inappropriate care, denial of care, or just “writing off” another high acuity chronic pain pt? Another death that will not show up on any statistical database as an intentional failure of our health care system?
Gretchen’s Pain Journey and Death
I write this on behalf of one of my dearest friends, Gretchen Lont, a fellow pain warrior whose spirit I cherished deeply. I made a promise to her: to ensure her pain story is told. Her last hope was that by sharing her experience, we might alleviate the needless suffering of others grappling with untreated or undertreated pain. We call ourselves pain warriors, having fought tirelessly since 2016 for the rights of those struggling with painful conditions to receive adequate pain treatment. According to the NIH and CDC, nearly 21% of the U.S. population—51.6 million adults—suffer from chronic pain, surpassing the combined numbers of those afflicted by heart disease, diabetes, and cancer.
Tragically, Gretchen Maria Lont, age 59, passed away on January 19, 2025, after enduring years of unbearable undertreated pain. Despite her persistent pleas to her doctors, her words fell on deaf ears. Just days before her death, she received a devastating diagnosis: ALS, also known as: Lou Gehrig’s Disease.
Before her disability, Gretchen lived life vibrantly. She adored her three sons—Zach, Jordan, and Nathan—and cherished every moment with her family, including her father John, her sisters Stacy and Kristen and brother Michael. She worked tirelessly to provide for her children and always carved out time for joy and laughter. To live life to the fullest.
Gretchen embodied the belief that giving is a greater blessing than receiving. Her generosity knew no bounds, and her radiant smile could light up any room. With a feisty spirit, she was a fierce protector of her loved ones. She found solace in crafting—painting and making jewelry—each piece a testament to her incredible talent. Animals had a special place in her heart; her social media was filled with adorable animal pictures. She often fed the squirrels and birds in her yard and she adopted a special needs cat named Cleo saying, “We’re two damaged bodies just trying to survive, and we’ll do it together.”
Gretchen’s journey into pain began with an accident at an upscale restaurant in Tacoma. A spill that had gone uncleaned caused her to slip and fall, resulting in a severe back injury which later required surgery. This injury ushered in years of excruciating pain, followed by joint pain, more surgeries and a possible diagnosis of Rheumatoid Arthritis at the age of 57.
Desperate for relief, Gretchen explored every alternative treatment available, yet none eased her suffering. Living with chronic pain is akin to living with a chronic illness; you feel invisible. On the outside, you might appear fine, but inside, your body is screaming in agony. Eventually, she found a compassionate pain management doctor who, for many years, treated her as an individual. With the help of opioids, she managed to regain a semblance of her life—spending time with family, painting and crafting, celebrating holidays, and enjoying the beauty of nature. Her passion for art blossomed, allowing her to create stunning jewelry and amazing paintings.
Sadly, her doctor, after years of facing scrutiny from medical agencies (though she never lost her cases), decided to retire, joining many physicians who chose to close their doors due to the hostile environment surrounding pain management. In June 2021, she gave her patients a year’s notice in the hopes it would be enough time to find new care. Unfortunately, Washington proved to be a wasteland for chronic pain patients; most physicians are unwilling to take on patients who are on opioid therapy, and those who will often refuse to continue the opioids and force patients to try previously failed methods. Gretchen’s only option was to pursue invasive surgery for a pain pump. To qualify, she needed to undergo extensive psychological and physical evaluations, which she passed. However, she was then told she had to reduce her opioid dosage by 75%. This drastic cut left her bedridden, trapped in a cycle of agonizing pain.
After months of suffering, the pain specialist told her that her insurance, Medicaid, would not cover the cost of the pain pump or surgery. In desperation, she asked if her opioid dosage could be increased to a dose that would provide some relief from the agonising pain. Unfortunately, she only received a minimal increase leaving Gretchen to continue suffering in unbearable agony.
On October 3, 2023, Gretchen felt a deep despair settle over her. Bedridden and in relentless pain, she questioned why a person should be forced to suffer this way. There was always a battle to fight, trying to find a doctor willing to provide adequate pain treatment, dealing with pharmacists who were choosing whether or not to fill a valid prescription for pain medication and insurance companies not covering prescribed pain treatment. She felt like a burden, unable to spend time with her family or do any of the things that brought pleasure in life. The pain specialist seemed indifferent to her deteriorating condition. She made the heartbreaking decision to take all her medications in an attempt to end her suffering. Fear gripped her, and she confided in her son, who immediately called 911. Resuscitated through CPR, the ER team noted that this tragic episode could have been avoided had her pain been managed appropriately. They had seen this happen many times. Gretchen was discharged with the recommendation to consult her pain specialist about increasing her medication.
The following day, during a virtual visit, her pain specialist expressed sympathy and promised to improve her pain management. Yet, hope quickly faded when, the next day, at an in person meeting, he declined to increase her dosage, and Gretchen continued her downward spiral.
A friend referred her to a new doctor who specialized in both primary care and pain management. This physician was willing to help but insisted on a cautious approach. They tried various medications, which provided minimal relief, but Gretchen’s health continued to decline. The years of untreated pain had caused irreparable damage. She had been losing 5-8 pounds weekly, struggled with swallowing, and faced increasingly severe breathing difficulties. She was a mere shadow of the vibrant person she had been two years prior.
By late December 2024, Gretchen’s breathing worsened, leading her doctor to recommend a visit to the UW Emergency Room for treatment of suspected pneumonia and to obtain a neurology consult. Ultimately, alongside pneumonia, Gretchen was diagnosed with ALS also known as Lou Gehrigs disease. The suffering she had endured for so many years, stemmed from this undiagnosed, incurable, and painful disease.
Admitted to the hospital on January 1, 2025, Gretchen was discharged to home hospice on January 17. Just an hour after returning home, she suffered a coughing fit and an anxiety attack, necessitating another trip to the Emergency Room at a local hospital. Unfortunately, she soon became unresponsive. She remained in this state for approximately 24 hours, surrounded by her loved ones, until she finally stopped breathing on Sunday, January 19th.
“She has her angel wings now, flying free from pain—a bright light in our lives whose flame will never be extinguished”
NOTE:
It should be known that pain patients often go decades struggling with intractable chronic pain without a definitive diagnosis. Often patients are diagnosed with a Rare Disease or Medical Condition when it’s too late to do anything. Sadly, Gretchen had this disease but her doctors did not know.
GRETCHEN’S WORDS :
“Please help patients like me who have no options. We did not choose to have medical conditions that cause pain. No doctors will take you if you’re a chronic pain patient.
It’s devastating to be in such a vulnerable position and feel abandoned.
Our medical system is supposed to provide us with compassionate care and treat us as unique individuals instead, pain patients have become pariahs.
I share my story because I want those in power to understand that we are not just individuals suffering in pain, we are family members with loved ones who care for us and loved ones we care for. We deserve to live our lives filled with laughter and joy, not confined to a bed, incapacitated suffering in agonizing pain. There is an easy answer, treat our pain!
Please stop punishing those who suffer in pain. Our lives matter.”
From Maria:
This story in no way reflects all the beauty and individuality that was Gretchen. It defines her struggles with untreated pain but there was an entire life in which she lived and loved, her children and her family, were her world. I only ask that you respect her family’s privacy during this difficult time. She was a bright light that has sadly been extinguished. I am heartbroken at the loss of a beautiful friend.
Sent from my iPhone
Filed under: General Problems
Wow, what an incredibly sad story! I feel just terrible for all the uncontrolled pain and suffering she had to endure because of the lack of proper medical care, and feel so terrible for her family that are left with these tragic consequences. As I was reading, my anger was fuming against the “pain specialists” who made all these promises of more controlled pain care, and ended up bold faced lying about it!! This is so ugly, and all of us CPP’s need this to stop! I’m also very sad for her dear friend that penned these words on her behalf.
This is just horrific, what Gretchen and her family & friends have been through. I’m a chronic pain patient myself, starting with undiagnosed Lyme and then a spinal injury. Currently undertreated for Ehlers Danlos & autoimmune conditions, also due to losing docs & other making promises they didn’t keep. My husband & I are a videography team, and for a long time we’ve discussed wanting to do a film for the CPP cause. No strings attached, we just know that until the public sees a story told in a way they can relate to, nothing will change. If we can assist with putting this story together, we’d be happy to help. We just want to do what we can to change the way CPP’s are treated – not just with pain management & how patients are treated, but also with the other options often provided that hurt patients much more than they help. There are also treatments that our gov’t refuses to cover that can really help CPP’s get their life back.
This is absolutely horrific that she and the rest of us has to endure! May she rest in peace and thank you for sharing her story! Prayers to her family and friends!
I pray with every ounce of my being that someone will listen to our stories and get us some much needed relief, no one deserves to live like this! If there’s anything we can do, I pray you get the word out to us all!
psss sadly forwarding ,,,maryw
God will this medical torture to death ever end????God rest her soul,,,In the arms of the angels,,,,fly far far away from here,,,,it gotta end!!!!!!!!!!!!!!!!!!!!!!!!!!mw
very hard to read without paragraph breaks
you will have to talk to Maria about that since she wrote it about her 59 y/o friend that appeared to have died because of lack of care – I am sure that she will appreciate your grammatical comments
How horrible! Why Dr’s. Why? This has to stop!
Horrific and tragic. How have things been allowed to get so inhumane and bad in this country? Where is the advocacy from public leaders? God Bless her soul and her family.