Kasey Passen, a Chicago chef and nutrition expert, understood the loneliness that comes with having Lyme and felt passionate about building a peer-to-peer support system. She founded the first "Top Chef Chicago Foodie Fundraiser" event, a "Sublyme Soiree," to support the cause, which was close to her heart. All proceeds from the affair would go to the Global Lyme Alliance to fund Lyme disease research. Kasey was a "life lover" who often posted about Lyme disease, sharing educational content on the disease and how it "killed her vibe." Kasey was known for her love of cooking, and bringing people to gather and feast. On her Instagram, Kasey shared photos of her travels, often using the term “healing”, photos of holding baby goats, and describing those moments as “pockets of heaven”.
She loved nature and it was often her sanctuary. She loved the important people in her life and made it obvious. She expressed herself in other forms of art, photography, and painting. Her photos were all smiles, happiness, and joy. “Enough said…Tell someone you love them today” she captioned on one post with a picture of a chair that was painted with the words “life is sweet”. She goes on to mention under the caption “Another beautiful day to be alive! #gratitude”. The last Sublyme Soiree was held on August 23rd, 2018. On August 29th that same year, she posted a family picture which she captioned “Happy 40th anniversary mom and dad!!” smiling alongside her loved ones. I then learned, on September 4th, 2018, Kasey Passen tragically took her life, but they would say ultimately it was the disease that took her, which I can 100% support.
As I read and learned more about Kasey, I found so many similarities in our personalities. Bringing strangers and loved ones to gather around a table is our passion. Our way of healing is through nature. Our love for our family and friends is like no other, and our wish to live the most positive and happy life we can is obvious. I feel that making and seeing people happy takes me away from the pain I sometimes experience in my mind that is caused by chronic Lyme. I can only imagine Kasey was feeling the same way. You become super empathetic to those around you, hoping for the same empathy in return when you are at your lowest, and not be criticized or condemned because you appear fine on the outside.
After Kasey’s passing, CEO Scott Santarella was determined to carry out her passion and live her legacy by ultimately launching the GLA’s Peer-to-Peer Mentor Support program. The program offers support to Lyme sufferers and caregivers of those suffering from Lyme. Kasey’s family asked that donations be made towards Global Lyme Alliance, as she would have wanted. Knowing that she would feel no way out, even at the brink of her career and philanthropic efforts, tells me that this disease can suffocate anyone even during times of great accomplishment.
I became symptomatic at 19 years old, and after many thorough tests, ultimately was diagnosed with anxiety disorder with underlining depression. I suffered from intense headaches, lethargy, and feeling like I was going to fall over when I’d walk. All my limbs felt weak and I found myself sleeping for hours during the day even after having a full night’s sleep. Every day was something new, vision disturbances, feeling foggy-brained, dizzy, and having air hunger. I would tell my mom, the only way to describe it was like the feeling you get after blowing lots of balloons. Every doctor we saw concluded with the same, anxiety and depression.
My twenties were spent on a rollercoaster of symptoms on and off again, and things worsened as stress piled on. Winter months were the worst, and I was often weak and bedridden. I was diagnosed later with Ebstein-Barr virus which when activated under stress, caused me to feel all these symptoms. Then another doctor said I was hypoglycemic, and I had low oxygen levels and blood pressure. It was when I started dropping things easily, having issues grabbing a pen/pencil to write, forgetting easily, finding some of my memories were either minimal or gone, having difficulty reading and articulating what I was seeing, and having a hard time finding words when I was speaking, it became evident something was wrong. I thought I could possibly be suffering from a tumor or early dementia, so I sought a neurologist who requested an MRI of my brain, and found what she called a “scar”. She asked me repetitively if I had fallen, had a car accident, or hit my head and I would answer no to all her questions. She looked puzzled and even more puzzled when she discovered I had severely low B-12, suggesting not treating soon could cause brain damage. I thought we had the answer, so I went on B-12 injections and rechecked my blood levels until they were raised to a normal amount. Still, after that, I was having symptoms.
I started to bruise easily and my hair was falling out. I wasn’t convinced I had the answers but at this point, I was a mommy to two little boys and had to stay strong, for them. I went through a difficult divorce, which also threw me into another sick season. At this point, I sought out an infectious disease provider in my area to take over my medical care. Perhaps there was an immune deficiency issue I was having and he would find it for me. I told him all my symptoms and he promised to figure it out, and on February 14th, 2017, I got a call from his office. The nurse said “Everything was normal but you tested positive for Lyme disease, do you have a dog?” I responded no. She went on to ask if I had been in the woods, and recall a bite or a bullseye rash. I responded it was the dead of winter, obviously not. She told me not to worry, two weeks of doxycycline would take care of it. I was relieved to finally get a diagnosis and finally feel like I was not crazy. I read about Lyme before and I was pretty sure I asked to be tested for it, but the tests came back normal. Perhaps they missed it? But I would learn later about faulty lab testing.
I went through the treatment, hopeful it would get me feeling back to normal, but it didn’t. I would later return and ask him if he would be okay to continue my care under a Lyme Literate Medical Doctor (LLMD) and with his blessing, I continued my care to one in my area who then placed me on IV Rocephin for one month. I felt slightly better but all symptoms would slowly return and then I found myself on rounds of other antibiotics, antivirals, and finally herbal treatments. I am still searching for my cure, but I am pretty sure there is none. The only thing I can do is keep myself above water by being kinder to my body maintaining a healthy lifestyle and regularly detoxing. My mental health state is not the best, but medication and intense regular therapy keep me functioning at close to normal levels. I get regular flare-ups but the bad days don’t last very long. I have issues with my vision that makes it difficult to drive at highway speeds, so I find my way around that with my husband taking the wheel most days, or grabbing an Uber as often if I need to get somewhere that’s pretty far. I do find myself extremely sensitive at times and easily moved to tears or triggered to panic attacks. It’s embarrassing but my loved ones have learned to help me cope and medications do help a lot. I have at times felt like this was how I would die, suffocating in the hands of “Lyme brain”, but I don’t think death is my answer, not until I am in my late 80’s or 90’s at least! I am motivated to fight and survive for the sake of my family, friends, and myself. Although I always wanted to plan events, I realized that large-scale events were not feasible due to my battle with Lyme disease. However, I found joy in creating intimate events.
I started my own intimate gatherings business called The Boho Barn, which offers dining or picnic setups in a surreal setting with bespoke furniture and décor. As someone who has experienced sensory issues related to Lyme disease, I wanted to create a calm atmosphere that appeals to those struggling with the same. In addition to creating beautiful memories for my clients, I also want to give back to the community by supporting the Global Lyme Alliance (GLA). I believe in the GLA's focus on mental health and providing resources to help those with Lyme disease cope with the mental distress that often comes with it.
Global Lyme Alliance (GLA) funds studies to support the wide range of psychiatric illnesses experienced by Lyme patients. A recent study found that patients with Lyme disease have an elevated risk of mental disorders, which is 28% higher compared to those without Lyme. The study also revealed that the incident rate ratio (IRR) remained high after the discovery of Lyme, indicating the long-term mental health effects on Lyme patients. Research has shown that Lyme patients have a higher rate of suicide attempts, and the rates are higher after a prolonged struggle with the disease. GLA is a leading 501(c)(3) organization dedicated to conquering Lyme disease through research, education, and patient services. They help sufferers locate a Lyme literate physician in their area and have initiated a Lyme peer-to-peer mentor program to provide support to Lyme sufferers and caregivers.
I am inspired to bring more attention to the mental struggles that come with Lyme disease and support Kasey’s support program, so I have committed to donating to the Global Lyme Alliance on behalf of Kasey Passen and her efforts for every setup or event The Boho Barn provides to groups of 6 or more. The amount donated will be equivalent to the per-person rate for that specific event (this is an average of $65.00 per event). The new initiative will be named "A Seat for Kasey", and it will signify more than just donating the cost of one seat. We will also honor her vision at every event and ensure that we assist the GLA in continuing to fulfill her legacy so that no patient with Lyme disease has to suffer alone.
Global Lyme Alliance (GLA), the largest 501(c)(3) dedicated to conquering Lyme and other tick-borne diseases through research, education, and patient services, congratulates Dr. Michael Eriksen Benros of Copenhagen University Hospital and Dr. Brian Fallon of Columbia University on the publication of their major findings of elevated risk o
Global Lyme Alliance (GLA), the largest 501(c)(3) dedicated to conquering Lyme and other tick-borne diseases through research, education, and patient services, congratulates Dr. Michael Eriksen Benros of Copenhagen University Hospital and Dr. Brian Fallon of Columbia University on the publication of their major findings of elevated risk of psychiatric illness in Lyme disease patients. Their two-year study, funded by GLA, was just published in The American Journal of Psychiatry. (click to read more)
Global Lyme Alliance developed a peer-to-peer mentor support program; a free resource for people who are affected by Lyme disease and/or other tick-borne illness. Lyme patients, caregivers, and family members who have questions or just need to talk can connect with someone who has already “been there” and can provide support and hope. Pee
Global Lyme Alliance developed a peer-to-peer mentor support program; a free resource for people who are affected by Lyme disease and/or other tick-borne illness. Lyme patients, caregivers, and family members who have questions or just need to talk can connect with someone who has already “been there” and can provide support and hope. Peer mentors are people who have been diagnosed with Lyme disease and/or other tick-borne illness or are caring for someone who has and understands what you are going through. (click to read more)
May is Lyme Disease Awareness Month and Mental Health Awareness Month. These matters are inextricably linked because there is now a mental health crisis among those with tick-borne diseases. As Dr. Robert C. Bransfield writes, “Lyme and other tick-borne diseases contribute to causing a significant number of previously unexplained suicides
May is Lyme Disease Awareness Month and Mental Health Awareness Month. These matters are inextricably linked because there is now a mental health crisis among those with tick-borne diseases. As Dr. Robert C. Bransfield writes, “Lyme and other tick-borne diseases contribute to causing a significant number of previously unexplained suicides and is associated with immune-mediated and metabolic changes resulting in psychiatric and other symptoms.” (click to read more)
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